Enzyme Potentiated Desensitization Frequently Asked Questions (with answers).
Revision: 05/10/2018, 5/22/2023 Portions (C) Copyright Stan Rohrer
For comments concerning this page, please contact Stan Rohrer <Stan_Pub at EarthLink dot Net>.
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Enzyme Potentiated Desensitization (EPD) is a method of allergy or immunotherapy treatment using extremely small doses of allergens to desensitize people from their allergies. It has been seen to be effective for inhalant, food, and chemical sensitivities, along with acting on other significant health problems. The discussions are written from the perspective of the United States implementation of the treatment protocol. Herein we will attempt to answer frequently asked questions about the FAQ, the EPD Mailing List, the EPD treatment and surrounding protocol, common patient questions, and provide direction to additional resources.
Readers should note that EPD is not widely available in the United States due, in part, to restrictions of importation by the FDA. Development of Low Dose Antigens (LDA) and Low Dose Immunotherapy (LDI) are replacements possibly made available in the USA.
DISCLAIMER. The information contained herein was generally written in relation to EPD. As such, these may or may not relate to the LDA and LDI treatments being developed. Though, the treatments appear to follow similar restrictions and treatment plans.
DISCLAIMER. The EPD FAQ is an "Unofficial" collection of information. That is, neither Dr. Leonard M. McEwen, nor Dr. W. A. Shrader, Jr., nor any principle in the FDA/IRB study, nor any principle in the EPD development, nor any principle in the LDA development, nor any principle in the administration of the EPD technique, nor any principle in the administration of the LDA technique, nor any member of the American EPD Society (dead? 03/21/2011) (dead? 5/7/08), nor any member of the paid medical community, have authorized or sanctioned this collection of information. The editor, writers, and submitters of questions and answers herein are generally not a part of the medical profession and may or may not have first hand EPD/LDA experience. These items have been collected as a service to EPD Mailing List members, for information only, and cannot replace the advice of your medical practitioner for your particular case. While every effort has been taken to ensure the accuracy of the information contained herein, the author, maintainer, and contributors assume no responsibility for errors or omissions, or for damages resulting from the use of the information contained herein. Implementations and usage strategies of EPD and LDA may change with further development and this document may not keep fully up to date. Again, this information cannot replace the advice of your medical practitioner.
NOTE: Due to old and new web page development tools, and the transferrring of existing pages between tools, some of the site page hyperlinking, internal page hyperlinking, and related clickable navigation has been damaged. My applogies. I doubt I will be able to recover.
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1.1 Where can I get the latest version of the EPD FAQ?
1.2 Who are the author and contributors for the EPD FAQ?
1.3 How about a Copyright notice?
1.4 How do I submit questions or answers for this FAQ?
1.5 How do I get my name or E-mail address removed from this FAQ?
2.1 What is the EPD Mailing List?
2.2 How do I subscribe to the EPD Mailing List?
2.3 How do I send messages to members of the EPD Mailing List?
2.4 What sort of discussion is considered acceptable on the EPD Mailing List?
2.5 How many messages will stuff my mailbox from this list?
2.6 Are the Mailing List Discussions indicative of the normal treatment routines people see?
2.7 Is there an archive of the EPD Mailing List messages available for review?
2.8 Who runs the EPD Mailing List?
2.9 How do I change my mailing list options?
2.10 How do I get removed (unsubscribe/signoff) from the EPD Mailing List?
2.11 How do I confirm if I'm on/off the mailing list?
2.12 Can I access the EPD List if I don't have an E-mail address?
2.13 What are those numbers people put by their names at the end of messages?
2.14 Tell me about the Facebook groups?
3.1 What is an Allergy?
3.2 What is EPD? How does it work?
3.3 Has EPD been around a long time?
3.4 Is EPD considered experimental? Is it approved by the FDA?
3.5 What is the Pink Book?
3.6 What allergies/sensitivities have been helped by EPD treatment?
3.7 What is the success rate?
3.8 Are there other upside considerations?
3.9 What are the side effects and downside considerations?
3.10 Why do some people get worse before they get better? (masking).
3.11 How soon will I get better?
3.12 Is the EPD protocol hard to follow?
3.13 What are the critical periods?
3.14 Where in the world is EPD available? How wide spread is it?
3.15 Can any doctor administer EPD?
3.16 Is there an EPD doctor near my town?
3.17 What is the cost of EPD?
3.18 What is the difference between the USA (Dr. Shrader) protocol and the England (Dr. McEwen) protocol?
3.19 How do I decide if EPD treatment is for me?
3.20 Will EPD affect my ability to work?
3.21 What is LDA? Is it like EPD?
4.1 Do I have to go through a lot of testing before beginning EPD?
4.2 What can you tell me about the actual EPD injection?
4.3 I've had more allergy related problems, instead of fewer, since my last shot - what has happened to me?
4.4 EPD made me worse - shall I quit?
4.5 I'm having problems, can you cheer me up?
4.6 I'm under a lot of stress, will that affect EPD?
4.7 What happens if I go out of bounds on the restrictions?
4.8 Why must I use special soap and avoid skin lotions during the critical times?
4.9 How many weeks of careful time need I observe?
4.10 Can I donate blood while on EPD?
4.11 How will I know when the shot "kicks-in"?
4.12 It's been over 3 weeks and I've seen no response from my shot. Why?
4.13 Will Amalgam Mercury dental work affect EPD?
4.14 Is EPD available for children?
4.15 Got any tips and tricks for children?
4.16 Will EPD fix my CFS?
4.17 What preparations should I make before the EPD shot?
4.18 Do I really need to avoid my cat, dog, and pets during the critical 3 days?
4.19 Do I really need to avoid tobacco smoke during the critical 3 days?
4.20 Why no sexual activity during the critical 3 days?
4.21 So I've been on EPD for umpteen shots. Need I observe the critical three days?
4.22 What can I do to convince my insurance to cover EPD?
4.23 Which insurance companies offer the best EPD coverage?
4.24 Are Dr. Shrader, D. McEwen, or any of the EPD doctors available on the Internet?
4.25 Is NAET (Nambudripad Allergy Elimination Treatment) compatible with EPD?
5.1 What foods am I allowed to eat during the critical 3 days?
5.2 What about some recipes for the critical 3 days?
5.3 Is the VMD or VVMD for me?
5.4 What can you tell me about Glycerin?
5.5 What can you tell me about Fructose?
5.6 What can you tell me about Ultraclear?
5.7 What can you tell me about the Granose or Tomor margarine?
5.8 The rotation diet has served me well, what's wrong with it?
5.9 Is there a simple test for my food allergies that won't get me thoroughly trashed?
5.10 Do I really have to take the gut preparations for fungus, parasites, and the like?
5.11 Do I really have to take all of those supplements?
5.12 What is the biggest "headache" with EPD (caffeine)?
5.13 What can you tell me about bagel's and tortilla's?
5.14 What can you tell me about buffalo and exotic meat?
5.15 Are there other sources of EPD diet foods, supplements, books, tests, and other items?
5.16 What can you tell me about manufacturers sources for the supplements?
5.17 What can you tell me about fish?
6.1 How about some success/disaster stories?
6.2 What other Internet resources are available regarding EPD?
6.3 What other Internet resources are available regarding allergies?
6.4 What other publications are available regarding EPD?
7.1 Masking/Unmasking.
7.2 Provocation/Neutralization.
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1.1 Where can I get the latest version of the EPD FAQ?
[Section Updated: 3/97, 5/23]
Only by World Wide Web page:
https://sites.google.com/view/stan-rohrer-allergies/epd-faq
Failing that, try WWW search engines for something like "Stan Rohrer EPD FAQ".
1.2 Who are the author and contributors for the EPD FAQ?
[Section Updated: 5/23]
Stan Rohrer <Stan_Pub at EarthLink dot Net> had been a patient using the EPD protocol. He has volunteered to administrate this FAQ for the EPD Mailing List. Initial FAQ construction began in December, 1996.
You can note some names scattered throughout the text. These people, and many others, have been active on the EPD Mailing List at one time or another, but may not be currently active. Contribution to the Mailing List are the primary source for answers in the Patients Concerns sections.
Publications and studies have been the primary sources (though not only sources) for the Learning About EPD Treatments sections. Most of these are noted in the Research Resources section.
Where any information found here is in conflict with the "official" American EPD Society site, or in conflict with your doctors information, please consider those sources may be more correct than the responses collected in this FAQ.
A special thanks is due to Jerry Straks <jstraks at switchboardmail.com> for having the foresight to archive the messages from the EPD Mailing List since late 1994. Without this resource, the creation of this FAQ would certainly not have been as easy and coverage would have been limited. [Editor - Jerry has NOT volunteered to supply additional copies. Please don't ask.] A special thanks is also due Jerry as he reviewed the FAQ contents prior to its release. Jerry is a computer professional and a former EPD patient and user of the Very Mixed Diet (VMD).
A special thanks is also due to Marge Jones <mastent at enaila.nidlink.com> for doing a "sanity" check of the initial FAQ contents prior to its release to the public. Marge is an RN, a writer of medical articles and books, and an EPD patient. She has offered excellent insight into many of the items discussed here.
Updates to this FAQ are done on a continual basis as the authors time warrants. However, in September of 1997, substantial changes, corrections, and updates were made throughout the text based on input learned from listening to the tapes of the July, 1997 EPD Society Meeting at Colorado Springs.
Stan Rohrer's use of EPD ended in 1998 when it appeared a failure to help with my allergies. I continued my quest on reasons for EPD failure and for treatments for allergies. However, as the years have passed, I have less and less desire to track EPD, and it's successors, for the purposes of updating the information herein.
1.3 How about a Copyright notice?
[Section Updated: 9/97]
This collection of information is (C) Copyright 1997 (and later) by Stan Rohrer. All rights reserved. Permission is granted for personal non-profit use. Additional copies and distribution require the express written consent of Stan Rohrer. Some information within this collection may be otherwise copyrighted and remains in the possession of those holders where that is the case.
1.4 How do I submit questions or answers for this FAQ?
[Section Updated: 2/97]
I have a real family supporting job, as well as many other functions that keep my life busy. As such, I cannot commit the time to be a clearing house for questions on EPD. As a matter of fact, the mailing list would likely provide better answers, from varied experiences and points of view, than I can do on my own. Read this FAQ, check out the references, and please join the mailing list (see below for instructions and address). Submitting questions to the mailing list is the best way to become a part of this EPD community. If I believe the questions and answers are relevant, and not erroneous, as discussed on the mailing list, I will include them here at some later date, as time permits. If you have done research on a particular answer to a mailing list question, don't be afraid to get my attention by suggesting "this may be one for the FAQ".
1.5 How do I get my name or E-mail address removed from this FAQ?
[Section Updated: 4/97]
With the advent of junk mail crawler robot software picking up E-mail addresses from Web pages (i.e. this FAQ) I have elected to slightly alter E-mail addresses so that they are not as easy to pick by the roving robots. The "at" sign character in the E-mail address is returned with the text word "at" so the address is unique to the robot. This should reduce junk mail arriving in the mail boxes of people I have quoted herein.
Some people would still rather not have their name published. Send E-Mail to <stan.rohrer at scitexdpi.com> stating the name to be removed and referencing the EPD FAQ.
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2.1 What is the EPD Mailing List?
[Section Updated: 5/10/2018, 5/023]
Note: In 2023 Mailing Discussion Groups (Email Lists) are really not in vogue. Discussion forums built within web sites are now common. Personal publishing sites such as Facebook can have special interest groups. Internet searches (e.g. Google search) might help find resources. Try searches like: "EPD group", "EPD groups", "Enzyme Potentiated Desensitiaztion".
Basically it is a group of people with a common interest in the EPD form of treatment. A computer has been set up to receive E-Mail submissions and resend them to all E-Mail addresses of individuals who have identified themselves as interested receivers by subscribing as described below.
The intent of this group is to create an open forum for people undergoing EPD treatments, people considering it for themselves, family members, friends, or people just interested in it. Since there is very little to the EPD injections themselves, this group functions as a dynamic support community for group members struggling with the protocol's behavioral modification, including diet, environment, and habits, that take place the week before and the two weeks following the actual injection. This regimen can be very tedious and frustrating. Moreover, for some, relief is not experienced until the second year of injections and, since the injections are typically spaced two months apart, this form of treatment represents a major intrusion in one's lifestyle; not to mention the effect on the family and friends (and pets) surrounding the patient. Keeping these constraints in mind, this mailing list, among other things, can serve as a forum for sharing personal experiences, knowledge, feelings, and so forth. EPD is fairly new in North America and hopefully the scope of this forum, viz-a-viz membership, might eventually extend to the UK, where EPD began in the mid 1960's and is practiced today. [Editor - I edited this from the Mailing List message of introduction, thanks to Jozsef A Toth <jatst3+ at pitt.edu> I believe.]
On 5/8/2018, Sanjoy <epd-owner at mit.edu> said:
Welcome to the new EPD list! You have been subscribed to it because you subscribed to the soon-to-vanish Yahoo! EPD list. Welcome to the epd@mit.edu mailing list!
On 5/7/2018, Kendal Carr <kcarr3489 at gmail.com>, regarding new Yahoo rules for groups, said:
As much as I don't want to, baring a Deus ex machina, I will be deleting the group as early as May 15, [2018] depending on how long it takes me to clear out of Yahoo. [Yahoo changed the rules of participant privacy concerning Email groups].
2.2 How do I subscribe to the EPD Mailing List?
[Section Updated: 05/10/2018]
A Web page interface is now being used for EPD Mailing List subscriptions. This is actually more simple than some of the Email accessed subscription approaches. Be sure to read the information and follow the instructions. The list has moved among a number of servers so this author hopes he has kept up with the instructions.
If you would like to subscribe to this group:
Visit: http://mailman.mit.edu/mailman/listinfo/epd
As of May 10, 2018, the EPD Mailing List is no longer at the <epd at yahoogroups.com> address.
As of January 5, 1999, the EPD Mailing List is no longer at the <listserv at wvnvm.wvnet.edu > address.
As of October 1998 the EPD Mailing List is no longer at the <epd at list.pitt.edu> address.
2.3 How do I send messages to members of the EPD Mailing List?
[Section Updated: 05/10/2018]
You must first be a registered member of the EPD Mailing list. See "How Do I Subscribe" above.
To send a message to all the people currently subscribed to the list, just send mail to:
epd@mit.edu
This is called "sending mail to the list", because you send mail to a single address and LISTSERV makes copies for all the people who have subscribed. This address is also called the "list address". You must never try to send any list command to that address, as it would be distributed to all the people who have subscribed.
2.4 What sort of discussion is considered acceptable on the EPD Mailing List?
[Section Updated: 10/00]
Almost any discussion about EPD protocol, treatments, problems, resources, and news are considered proper.
Name calling, picking on people, and personal slurs are considered improper, as in most E-Mail lists. Threads like these only disrupt the usefulness of the mailing list by perpetuating the problems. If you disagree with an EPD related discussion, by all means respond to the discussion topic with your opinion. If you disagree with the methods or words of the presentation directly aimed at a person (a flame as it is called), don't bother to add more fuel to the fire. Unfanned flames will eventually exhaust the fuel source and die.
Blatant advertising for products or services not related to EPD are improper. Advertising, from an informational perspective, on EPD and allergy related items, are acceptable if kept short, to the point, and not repeated more often than monthly (quarterly is even better). A pointer to a Web site or providing an E-Mail address for more info is appropriate for information beyond a descriptive paragraph or two.
List mail replies including resources and items, in response to a valid question, are considered proper and helpful, even if the sender stands to gain from the advertising exposure (the sender would do well to state they have potential gain so as not to offend some touchy list readers).
Product or service trade names are often fundamental to the discussions and are welcomed to avoid ambiguity. Use of trade names in discussions, where not providing gain to any list members, should not be construed as advertising.
Publishing lists of EPD doctors is not considered appropriate as the FDA may consider this advertising or solicitation and hence may taint the EPD study. A tainted study will be withdrawn and hence EPD withdrawn from access. Further, some EPD docs may not wish to publish to the world their use of a non-mainstream treatment. Please respect their wishes.
It is considered legitimate that list discussions of doctors, concerning likes, dislikes, and treatment plans, can be a useful thing since these are construed as personal opinions of the writers and not solicitations or advertising used for gain of the EPD principles.
Discussions of topics not directly or indirectly related to EPD are discouraged, since significant volumes of such content will dilute the value of the group to those struggling with EPD or suffering from conditions that may also respond to EPD.
The inclusion of copyrighted material mailing list messages is subject to copyright laws. In general, copyrighted material should not be sent to the list unless the sender has appropriate permissions from the copyright owner.
The inclusion of copied Web pages is generally not a good idea in mailing list messages. Many Email programs do not render the pages for viewing as does a web browser. Reading such pages becomes cumbersome when trying to get past the embedded HTML language markups. Without the complete HTML page information the rendering will not be complete and viewing, even from the archives, will be extremely cluttered. For the mailing list, provide URL's to the Web pages instead.
2.5 How many messages will stuff my mailbox from this list?
[Section Updated: 05/10/2018]
We may see a flurry of 30 to 40 messages over a few days and we may see completely dry spells as well. In early 2000 we saw about 60-80 messages per week on the average. The average message size was about 8-12 K bytes. As the list grows more activity might be expected.
With the advent of EPD becoming unavailable in Spring 2001, the message rate has increased as more people joined. Perhaps it will lighten when/if this issue is resolved. In July, 2001, the list was seeing an average of about 170 messages per week and had peaks over 200.
In 2018 we see maybe 10 messages per week on a very busy week and then there will be weeks of no activity. The list is very quiet as there are also Facebook groups and other groups around the Internet that allow discussions.
2.6 Are the Mailing List Discussions indicative of the normal treatment routines people see?
[Section Updated: 2/97]
Most likely they are not. People who are flying through the treatment without problems don't have much need to expend time and energy to find out more about something that is working for them. Likely the list gets weighted towards the side of the problems and concerns. People turn here for an education and for comfort and solace when things are not going well. This is much like Usenet groups or mailing lists dealing in specific issues, for example, PC video cards. Most of us don't read such a group unless we are having problems or intend to go make a purchase of a new part for our computer.
Very roughly stated, the mailing list had about 158 members in January of 1997, and estimates of over 5000 people are participating in the IRB/FDA study for the US alone, so the list represents about 3% of USA EPD patients (also note that not all list members are actually USA patients). Certainly, worldwide, the mailing list is statistically insignificant for reporting treatment information or trends based on individual list member responses or polls.
On Oct 21, 1996 James Newman <James at elija.demon.co.uk> commented on his brief poll:
Thanks to all of you for your support. Of course I'll give [EPD] a go for at least a year - my initial fear that it might be quackery has been completely dispelled by the number of very genuine and obviously sensible people who have had palpably good results with it.
With regard to the tone of the list, it occurred to me that dwelling on symptoms as they occur may give a discouraging slant. So I did a survey of the most extreme cases - good, bad and horror story (by email, not sender)- for the time I'd been subscribing. The negatives came to 11 and the positives to 15, with some individuals represented in both camps. Not very scientific, but it was enough to persuade me that it might be a good idea, if rough going at times. However, that hasn't stopped me wanting to winge [complain] in public, which is probably therapeutic too. I will shout very loudly if and when any good comes of it, to redress the balance.
On Nov 1, 1996, MVDS43A at prodigy.com (MR RANDAL K SPARKS) replied to comment by Patricia Rentz:
> Since I recently started EPD shots, it is great to hear how other's are doing. "The Pink Book" would have you believe this treatment is a sure thing as long as you follow the rules but, that is not what I am hearing here.
Patti, nothing is a sure thing but the view you get on this list is definitely distorted toward the negative. The people who are doing "simply maavelous" will not bother to get on the Internet and ask about their problems, because they aren't having any. We are the complainers, pissers, and moaners, not the average.
On Nov 24, 1996, Jerry Straks <jstraks at switchboardmail.com> responded to a comment that the EPD forum tends to run to those who are having problems or are just trying to get their first information on EPD:
I can vouch for that. EPD was a life-saver for me. Although this group has been a wonderful source of information that has expanded my understanding of the treatment, I completed my 9-injection sequence last May and have no NEED for the information here. Since I am 99% cured, I still monitor the discussion occasionally, in the hope that I can perhaps "pay back" to others what I have gotten from the group. Thank you to all who have contributed to my understanding. I wish you all the best in your struggles with your allergies and your road to health, perhaps through EPD.
2.7 Is there an archive of the EPD Mailing List messages available for review?
[Section Updated: 5/10/2018]
This FAQ is an attempt to summarize the discussion you might find in such a list. Likely this FAQ should be your first resource.
The recent EPD archives are also available from the mailing list host at:
http://mailman.mit.edu/mailman/private/epd/
Older EPD archives may also available from the mailing list host at:
http://groups.yahoo.com/ (dead? 05/10/2018?)
Go there, search to find the "EPD" list, click on the EPD entry, and check the archives. Free registration may be required at the site before being able to access some archives. If you are already a member of the mailing list, a Conversion Wizard utility is available to link your existing information to your access of the web pages.
Older archives of the list hosts may still be available but all bets are off. Follows is the ancient information.
On Dec 9, 1998, Sandy Sheppard <cna00012 at mail.wvnet.edu> identified another archive as:
The address for the EPD list archives, housed on the WVNET computer, from October 1998 is located on page:
http://wvnvm.wvnet.edu/htbin/listarch.viorexx?epdd-l&a:epd.archives (dead? 03/21/2011)
The LISTSERV software that runs the mailing list also makes archives available. More information on LISTSERV commands can be found in the LISTSERV reference card, which you can retrieve by sending an "INFO REFCARD" command also to "LISTSERV@WVNVM.WVNET.EDU". In essence, to get the messages from Oct. 1998, send a msg to:
listserv@wvnvm.wvnet.edu
with the following message:
GET epdsupport LOG9810
(98 stands for the year & 10 stands for the month).
The EPD Mailing list was run on another list server prior to October 1998. Old message archives may still exist there.
On Sept 15, 1997, Jozsef A Toth <jatst3+ at pitt.edu> explained access to the Mailing List archive:
To get old versions of the digest, send a message to:
Majordomo@list.pitt.edu
and include:
index epd-digest
in the message body. You'll get back an index of the form:
vXX.nYYY
e.g.,
-rw-rw---- 1 majordom staff 26346 Feb 11 1997 v01.n001
or
-rw-rw---- 1 majordom staff 39860 Sep 13 10:25 v01.n051
you can retrieve any digest version by sending another message to:
Majordomo@list.pitt.edu
and put the following:
get epd-digest vXX.nYYY
e.g.,
get epd-digest v01.n051
in the body of the message.
If all else fails, you can get more info from the old EPD List server by sending a message to <Majordomo@list.pitt.edu> with the subject line and body 1st line of <help> (one word for each, without the brackets). Be sure to not include a signature or additional text at the bottom of such requests. If the routine has changed, the new instructions should be provided via this path.
2.8 Who runs the EPD Mailing List?
[Section Updated: 03/10]
To send a message to the most current list administrator, send to:
epd-owner at mit.edu
The current EPD Mailing List administrator is Sanjoy <epd-owner at mit.edu>.
Prior to March 2018, the mailing list administrator was Kendall Carr <kcngso at yahoo.com>.
Prior to March 2010, the mailing mist administrator was Laura Toms <laura at ahphillips.com> ( was < ltoms at direcpc.com> before 5/3/02, was <ltoms at netspeak.com>, was <ltoms at columbus.rr.com> before 7/13/00).
Prior to January 1999, the mailing list administrator was Sandy Sheppard <CNA00012 at MAIL.WVNET.EDU>.
Prior to October 1998, the mailing list administrator was Jozsef A Toth <jatst3+ at pitt.edu>. With a job and location change, Jozsef transferred the administrative details to the new administrator. We are thankful for his initiation of the EPD Mailing List, and for his term as administrator, as he has contributed much to the on-going communications among EPD interested people.
2.9 How do I change my mailing list options?
[Section Updated: 05/10/2018]
Send your Web browser to:
http://mailman.mit.edu/mailman/options/epd
From there you can log in and access/set your mailing list options.
Alternatively, from the Email address that receives the EPD Mailing List mailings, send an Email message to:
epd-request@mit.edu
With a subject line of:
help
and you will receive instructions on setting options via the Email interface.
2.10 How do I get removed (unsubscribe/signoff) from the EPD Mailing List?
[Section Updated: 05/10/2018]
Send your Web browser to:
http://mailman.mit.edu/mailman/options/epd
Log-in. You may unsubscribe via the user center. Help is provided if you have forgotten your password.
Alternatively, from the Email address that receives the EPD Mailing List mailings, send an Email message to:
epd-request@mit.edu
With a subject line of:
unsubscribe
This will remove your address from the list. If you cannot send your unsubscribe message from the Email address used by the list, then use a subject line of:
unsubscribe [password] [address=<address>]
2.11 How do I confirm if I'm on/off the mailing list?
[Section Updated: 05/10/2018]
Send your Web browser to:
http://mailman.mit.edu/mailman/options/epd
Log-in and access the user center. Your user status should be available. Review your options to confirm they are sending the Emails as you desire.
2.12 Can I access the EPD List if I don't have an E-mail address?
[Section Updated: 6/99]
In a word, No, you can't be a true active member of the EPD E-mail List without an E-mail address. However, there are a number of ways to keep up with the list activities.
If you don't have a computer on the Internet, consider visiting a library or borrow someone else's computer that has Internet access. Free E-mail services, such as HotMail <http://www.hotmail.com/>, are available for use as a personal E-mail address. You need access to an Internet connected computer, using any account, and you can access your personal E-mail mailbox via a service such as this.
For people who have a computer with modem but no Internet account connection, consider the free mail services of the likes of Juno <http://www.juno.com/>. These provide software to have your computer dial into their systems and use a personal E-mail account. Similarly, NetZero <http://www.netzero.com/> is said to provide Email and in addition allow free Web browsing.
Also, many areas of the country have Bulletin Board Systems (BBS) run by hobbyists or have a city Freenet access to which can be connected with only a local modem phone call. Many of these are now providing Internet E-mail connectivity for a free registration. Ask your colleagues, computer store, or the neighborhood computer guru about these.
2.13 What are those numbers people put by their names at the end of messages?
[Section Updated: 11/01]
The number of EPD shots they have had. This helps readers know a bit about the degree of experience that the writer has had with the EPD protocol.
2.14 Tell me about the Facebook groups?
[Section Updated: 05/10/2018]
On May 15, 2014, "sophia.metanoia at googlemail.com [epd]" <epd@yahoogroups.com> commented:
For those of you who are interested in other support groups, there is a LDA Support Group on Facebook
https://www.facebook.com/groups/1416895628542629/members/
It's administrator is Julia Glassman-Hayde.
On May 5, 2018, Stan Rohrer referenced these possible additional Facebook Groups:
EPD (Enzyme Potentiated Desensitization) Help and Support - https://www.facebook.com/groups/1495908850420230/
LDI for Lyme - https://www.facebook.com/groups/828673227222144/
||||| Top EPD FAQ ||||| Allergies Home Page |||||
3.1 What is an Allergy?
[Section Updated: 2/97]
Allergists often point to medical tests which find IgE or IgG or other test detectable substances in the blood stream, or by skin reactions, when defining a source of a substance sensitivity. Clinical Ecologists, or Environmental Medicine Practitioners, on the other hand, often define an allergy as any environmental stimulus that produces an undesired symptom or an intolerance. The subtle definition difference is not so subtle when the doctors choose techniques to find sensitivities to foods and chemicals. The clinical ecologist may use the allergist's blood and skin testing, but if they haven't been useful in resolving the problems, he will go on with less conventional means to find the root of the problems. The traditional allergist is out of his league when blood tests and skin tests do not pinpoint a problem. In this FAQ we will use the latter, "broad", definition as it better covers chemical and food problems. That is, any environmental stimulus that produces an undesired symptom constitutes an allergy, sensitivity, or intolerance.
A number of us have been seen by allergists and classified with "Vasomotor Rhinitis" or "Idiopathic Non-Allergic Rhinitis". A person with this type may react to temperature and humidity changes, smoke, odors and emotional upsets. Symptoms are primarily nasal congestion and postnasal drip. This diagnosis comes after negative skin tests. In other words, such descriptions are a "catch-all" category for testing which actually doesn't cover all of the "broad" definition allergies such as food and chemical. Again, we will use the "broad" definition in our discussions herein.
Now how do we limit the "broad" definition? I won't try. Just see if your symptoms and problems relate to the coverage of EPD. They range from hay fever to arthritis, autism, irritable bowel syndrome, and many, many other conditions that appear unrelated to allergies - yet improve dramatically with EPD therapy.
For persons who wish more detail on the narrow definition, the following describes some to that end.
On Apr 22, 1996 Jozsef A Toth <jatst3+ at pitt.edu> said:
According to my ELISA/ACT blood test handbook there are four types of reactions:
Type 1: Acute = IgE
Type 2: Antibody = IgA, IgM, IgG
Type 3: Immune Complexes = Ag + Ab + Complement
Type 4: Cell Activation = LECTIN/CYTOKINE
Type 1 is the immediate response, and types 2-4 are collectively referred to as the delayed responses. Maybe someone else can shed some light on all the Ig and Ag stuff.
On Apr 23, 1996, Simon M McEwen <smcewen at rpms.ac.uk> added:
It depends how much detail you want to go into. Ig stands for immunoglobulin which is the same as antibody. The different letters after the Ig indicate which class of antibody (IgG, IgA, IgM, IgE). All of these molecules have different functions in the immune response, so that IgE, for instance, is the main line of defense against most macro parasites and some viruses (like rubella). For this reason IgE-mediated responses tend to occur in the skin or in the lining of the nose, lung and stomach. IgA is secreted in tears, in the stomach and in milk, IgG and IgM are the main ones in the body's fluids. Therefore (in theory) your symptoms will be different according to which class of antibody reaction you are producing: There is some overlap however.
3.2 What is EPD? How does it work?
[Section Updated: 10/97]
Enzyme Potentiated Desensitization (EPD) is an administration, via skin injection, of a beta glucuronidase enzyme and minute doses of mixed allergens. The enzyme is used at levels already found present in the body and the allergens are used in quantities much less than in conventional desensitizing treatments (allergy shots). The treatment is safer than conventional desensitizing treatments due to the low volumes of the agents. No part of the EPD treatment is derived from humans so the there is minimal risk of transmitting other diseases. EPD contains a wide variety of inhalants, foods, and chemicals and is capable of dealing with most common allergy problems. The EPD doctor determines which of these groups are to be included in the patient's therapy based on that patient's symptoms and history. Customization of the injected allergens beyond the major groupings is typically neither needed nor done, to our knowledge.
Without getting too far into the medical world, EPD reportedly stimulates the immune system to produce new T-suppressor cells, a specific type of lymphocyte, which is a specific type of white blood cell. These take 3 to 4 weeks to mature before they can begin their task of disabling mis-coded T-Helper cells. Essentially, this is a re-training program so the body does not react to those substances contained in the shot. The mis-coded cells are a part of the chain that stimulates the production of histamine, the major trigger of allergic response. EPD works much closer and more effectively near the root of allergy problems than many other current treatments or symptom reduction techniques.
Because EPD is an all natural preparation, and uses nature's own pathways into the desired destinations, some personal restrictions have been noted as beneficial so that the actions are not diverted into creating problems for the patient. By following The Rules, the patient becomes active in the treatment plan and active in protecting the effects of the treatment. Some of the restrictions are aimed at avoiding body stress for a period of time around the treatment and include such things as: don't run a marathon, skip the sauna or other heat to which your body is not acclimatized. Restrictions are also placed on things which may produce a negative result while the EPD treatment is taking effect. These restrictions are not tough in themselves but, as a whole, are a lot of details to be controlled. Included here is a period of the avoidance of: dust, dust mites, tobacco smoke, perfume, chemicals, body lotions and preparations, allergenic foods, certain medicines, caffeine, sexual activity, large doses of inhalant allergens, and pets. Note that this is not a complete description of The Rules and that each patient will be apprised of the necessary restrictions based on his or her particular case. For anyone who is really in need of major relief, the rules are seen simply as a trade-off against the chance to obtain a more normal lifestyle.
There are two versions of the EPD treatment plan - Simple and Complex. Some patients may have the treatment one to three times a year for Simple seasonal allergy treatment. After a few years the number of treatments are often decreased as they are no longer needed. The treatment covers inhalant hay fever allergies and dust mites and is good for the season.
Treating only inhalants, when other food or chemical allergies exist, may tend to exacerbate the other allergies. Therefore, most patients begin the Complex program by being treated every two to three months. The Complex EPD treatment can include foods, chemicals, wood, terpenes, and a number of other sensitivities. After a period of time, perhaps a year or so, the Complex treatments are effective enough that the period can be stretched to three and to four months apart and further continue to stretch the period. Many patients eventually drop to one per year or less. It was reported in October, 1996, that over 85% of the patients have permanently stopped the successful treatment after 16-18 shots, with no recurrence of the symptoms. If symptoms should start to be noted in a few years, another shot, or perhaps two, will restore the patient to a state of well being.
Most of the info concerning patient rules and protocol in this FAQ relates to the Complex treatment plan.
3.3 Has EPD been around a long time?
[Section Updated: 9/97]
Dr. Leonard M. McEwen (London) began work on the method in the mid-1960's in England. He continued the work of the late Dr. S. Popper, who had noted that hay fever symptoms were reduced as a side effect of treatments he was doing on nasal polyps using injections of hyaluronidase. Dr McEwen determined the active ingredients and he and others have since worked to refine the EPD techniques and determine the best patterns for making the treatment effective. Dr. W. A. "Butch" Shrader, Jr. is the United States counterpart in recent years. Dr. Shrader recovered from disability via the use of EPD and became interested in what it had to offer for other patients. Dr. Shrader went to London and trained with Dr. McEwen and they continue to work together as well as co-lead training classes for doctors wishing to participate in EPD. Both doctors are well aware of the slight protocol differences in their use of EPD.
3.4 Is EPD considered experimental? Is it approved by the FDA?
[Section Updated: 09/2006]
EPD importation into the USA was stopped in 2002. LDA (Low Dose Antigens) is the USA replacement. Some historical and current status may be available at the web site of Dr. Shrader.
[Section Below Updated: 05/02]
The first answer may depend on your definition of the word experimental. Having been in use for over 20 years indicates that quite a bit is known about the EPD technique. The test data results are showing good consistent results from the treatment.
As of July, 2000, the EPD treatment is NOT APPROVED by the FDA. The EPD Serum is NOT APPROVED by the FDA as a drug.
The Food and Drug Administration (FDA) does not generally approve or disapprove any allergy therapy technique. Even conventional allergy shots are not approved or disapproved by the FDA. However, EPD has been under a study by GLACM (Great Lakes Association of Clinical Medicine), an Investigational Review Board (IRB), for the purposes of documenting the treatment to FDA standards. This five year study may be used to validate the previous results seen during EPD development. Over 70 doctors and over 7200 patients are a part of this study in the United States as of the Fall, 1997. This study began in 1994.
As of July 2001, over 120 doctors, over 10,000 patients, comprising of over 58,000 doses of EPD have been included in the 8 years of the study. The study has tracked 65 symptoms.
The FDA is not expected to approve or disapprove of EPD. However, the collection of data, based on well-documented scientific study, is hoped to pave the way for greater acceptance of EPD in the US medical community, as well as among patients. Of course we all wish for a favorable outcome of the study but the standards of such studies prohibit early release of the results, favorable or unfavorable.
The EPD serum is also expected to have to undergo consideration as an Investigational New Drug (FDA IND). This will take additional time for completion and final FDA consideration.
Among the institutions which should eventually be affected by the studies are health insurance companies. Many will not cover EPD treatment on the grounds that it is experimental. The IRB data, when released, should help in establishing EPD as a much less controversial, perfectly credible, modality of treatment. Successful scientific medical studies should also help provide additional resources for legal protection to those physicians who choose to treat with EPD methods. With more backing, more doctors will feel free to offer EPD as a treatment. This, of course, is a long process which must be carefully and diligently completed.
In February, 2000, it should be noted that patients that have never started EPD may not be accepted into the EPD program. We hoped this was a short term access closure. The EPD principles, working with the FDA, are apparently reviewing many years worth of data to determine the next steps for EPD research. During this time existing EPD patients may continue with EPD but new entries may be denied.
In the spring of 2001, EPD became unavailable to all USA patients, including previous EPD users. Paperwork and government red tape are an issue for the IND (Investigational New Drug) study.
For more information on the current EPD status, letter writing campaigns, and availability of EPD shots provided in Canada or Mexico, see the following resources:
http://www.epd-pa.org/ (dead? 03/21/2011) (dead? 5/7/08) - The EPD Patients Alliance.
http://216.243.122.164/epd/ (dead? 03/21/2011) (dead? 5/7/08) - The EPD Study Office and Dr. Shrader's updates.
http://www.food-allergy.org/epdstatus.html - Web page by EPD patient Nickie Dumke.
On May 3, 2002, Simon McEwen <simon.mcewen at pop3.hiway.co.uk> presented a synopsis of McEwen and FDA events:
Dr. McEwen's first approach to the FDA was in August 1999. The GLCCM IRB was terminated in February 2000 because of serious deficiencies in several of the committee's trials. The FDA did however allow the use of EPD to continue provided that no new patients were enrolled. The final termination letter was issued to Dr. Shrader on April 4th 2001 citing, among other things, that he had continued to enroll new subjects. In March 2000 we engaged the services of a Washington firm of attorneys -Swankin and Turner. On June 3rd 2000 we submitted a formal request to the FDA for a pre IND meeting. this was denied but we managed to obtain a telephone conference call between ourselves, Mr. Turner, Dr. Shrader and eight FDA officers on July 14th 2000. The FDA stated at that time that the IND must be only for a single indication such as ragweed pollen allergy.
We put in a further formal request for a pre IND meeting on November 1st 2000. It was then that we made our manufacturing details available, intending this information to be only for the FDA's benefit. Our second request was denied so we dispensed with the services of Mr. Turner and at our own expense hired a U.S. Regulatory Affairs Consultant. He helped us to submit the application in the correct format, which took months of hard work, and we were finally granted our pre IND meeting in September 2001. Dr. L. M. McEwen crossed the Atlantic four times in six weeks in economy class to try to get this off the ground.
On April 4, 2001, Sue in the UK, <Sue at CADMORE.DEMON.CO.UK> provided status:
I saw Dr. McEwen today. I have told him about this group and he has asked me to pass on the following information re the FDA: The reason that EPD is still on hold is that the FDA now insists that EPD must go through the Investigational New Drug (IND) procedure before any new patients can be taken on. This costs about UK pounds 2000-3000 per antigen (carrots, dog hair etc.). The FDA are also insisting that under NO circumstances will they allow an IND procedure for a mix of antigens, i.e. exactly what EPD is about. This means that each ingredient of every injection has to be separately tested (About UK pounds 15 million in cost!), and even then the FDA would not allow it to be administered in a batch.
This effectively means the end for EPD. Dr. McEwen has been working desperately behind the scenes (he collapsed earlier this year with bad flu) to try to change the mind of the FDA. He has been to Washington twice to see them and has employed a consultant to help. The FDA are dealing with him because he is the originator of EPD and runs the laboratory which makes the stuff.
The only way through this is to get the FDA to allow an IND for the EPD mixes, rather than individual items. The consultant has advised Dr. McEwen that it is the FDA's interpretation of the rules which says that an IND cannot be done on a multiple-ingredient treatment, and that the rules could be interpreted differently.
He has been advised that he will get nowhere with the FDA on his own - his best bet is to lobby a member of Congress who can then lobby the FDA for a change towards EPD.
A suitable candidate has been identified in Dan Burton, a Republican Congressman from central Indiana. Mr. Burton has an autistic grandson and has been lobbying for a change in vaccination rules etc., in other words he is a well-informed and sympathetic man. Dr. McEwen met with his assistant Beth Clay earlier this year and has been advised that about 200 letters to Mr. Burton would give him enough to go to the Senate and try to push through some changes (don't understand this as not an expert on the US political system). The letters can be from people who have had success with EPD, those who are on it and benefiting, or those who would like to do EPD but are unable to get it due to the ban on new patients. The idea is to tell him what benefits you have had from EPD/why you would like to have the treatment, and ask him to help you to get this continued. There is some research being done on EPD - there is a mosquito trial which is being done in the US which is proving that single EPD dose for anti-mosquito allergy is successful (I think this is going through as a stand-alone IND). Also in the UK they are doing a trial on EPD and hay fever (although obviously this is a mix of antigens) at Southampton (results due this autumn).
His contact address:
Beth Clay
c/o Congressman Dan Burton
2185 Rayburn HOB
Washington, DC 20515
tel: 202 225 2276
fax: 202 225 0016
he does not have an e-mail address but does have a website with more info, biography, picture and bit on health care views at http://www.house.gov/burton/ So, please can all the US people write. Also if you know of anyone who has had EPD and now left the group, or who would like to have it, who would write, please can you pass this information on to them. This may only be for the EPD people in the US but it affects all of us - without the US demand for EPD injections, the laboratory becomes non-viable and will have to be shut (the finances are already in a dire state), ending EPD for all of us. A last request - please could those who do send letters let me know - not necessarily a copy but a one-line email to let me know that you have sent a letter.
On April 30, 2001, Charles <charles at w-link.net> announced:
Just so everyone knows, the official web site for the EPD Patient Alliance is "www.epd-pa.org" (dead? 03/21/2011) (dead? 5/7/08) (dead? 04/07/03).
On July 31, 2001, Stan Rohrer <stan.rohrer at scitexdpi.com> received a note that indicated EPD is no longer being operated under the IRB Study rules. The <www.epdallergy.com (dead? 03/21/2011) (dead? 5/7/08)> web site is now showing links to non-study-controlled EPD sites (such as the EPD FAQ and allergy resources).
3.5 What is the Pink Book?
[Section Updated: 11/2008]
The Pink Book is the Enzyme Potentiated Desensitization Patient Instruction Booklet provided by the American EPD Society and written by W. A. Shrader, Jr. M.D. This booklet has been prepared for patients of physician members of the American EPD Society. It contains information on environment, foods, treatment, supplements, and other considerations dealing with the EPD treatments. Some of answers in this FAQ are a synopsis of the sections contained in the Pink Book. The book originally used here was the January 1996 - 6th Edition. US patients following the Dr. Shrader protocol generally receive the book prior to beginning the treatments. If your doctor is not in the US, or your doctor has chosen to follow the Dr. McEwen protocol, then you will likely not see the Pink Book.
The revision level of the Pink Book, Enzyme Potentiated Desensitization Patient Instruction Booklet, is at least: May 2002 - 1st Edition.
Reportedly Dr. McEwen also has a "Pink Book" although this author doesn't know if the cover color is actually pink. Be sure you know which Pink Book is being discussed, the McEwen or the Shrader version.
On 23 Apr, 2002, <proberts at uottawa.ca> commented on the McEwen Pink Book:
The pink book is Dr. McEwen's "everything patients should know about EPD and how to prepare for each shot" guide. There is also an American Pink Book by Dr. Schrader.
Extremely useful to read and re-re-re-read.
It doesn't explain nearly everything, however. Little or no mention of the possibility of developing new sensitivities. Many suggestions people have reported on this list (My doctor told me to.....) are not in the Pink Book, since different patients need slightly different combinations of meds and precautions.
On 15 Nov, 1999, Sandy Hughes <moehopper at yahoo.com> suggested a source if your doctor's office doesn't have the latest Pink Book available:
I bought my newest one directly from Dr. Shrader's office. I called and they sent it to me. I think it was $5-6 plus shipping.
On May 12, 2000, Sue in the UK <Sue at CADMORE.DEMON.CO.UK> mentioned a UK version of the Pink Book:
There has only ever been one version of the UK Pink Book, dated 1993! I did suggest to Dr. McEwen that we could do with an update - he agreed but has not had time to do it yet. There are some things that have changed since then (e.g.. the UK 1993 Book says all UK anti-histamines are safe, when in fact the new family of anti-histamines such as Claritin interfere with EPD - stick to the old ones such as Piriton).
On Nov 7, 2002, Heather <Tsasha007 at aol.com> mentioned an update on the UK version EPD Handbook:
One of the ladies in England has produced an EPD Handbook. It is very well organized and full of useful information. I am not sure it would be useful for those elsewhere, because it does specifically relate to products and services in the UK, but surely someone in America could do the same? The Handbook is available from Sue Cook at <cadmore at waitrose.com>.
On Oct 27, 2003, Christi - Indiana <hrabc at comcast.net> mentioned an LDA Handbook:
My pink book for LDA is dated March 2002....
On Nov 10, 2008, the editor received notification that the pink book version for the USA is at least May 2002 - 1st Edition, replacing April 1998 - 9th Edition
3.6 What allergies/sensitivities have been helped by EPD treatment?
[Section Updated: 2/05]
Over 50 disorders have been shown to respond to EPD. EPD has been used to treat all aspects of allergies including allergens in the inhalant, food, and chemical realms. Because of having increased T-cells actively doing their thing benefits us in many ways, patients with many co-existing conditions have also improved, sometimes dramatically. EPD, though being studied for allergy response, has been seen to have favorable impact on co-existing conditions including: Hay Fever, Chronic Rhinitis, Food Allergy/Intolerance, Food Preservatives/Additives Sensitivity, Fatigue, Migraine and other Headaches, Candida, Chemicals/MCS, Sinusitis, Asthma, Ear Infections, Depression, Eczema (Dermatitis), Arthritis, Rheumatoid Arthritis, Chronic Bronchitis, Colitis, Muscle Pain, Joint Pain, Migraine Headaches, Hyperactivity/Severe ADD (Attention Deficit Disorder), Emotional Problems, Behavioral Problems, Facial Angioedema (swelling of face or lips), Anaphylactic Reactions (life threatening swelling), Severe/Chronic Urticaria (Hives), Nasal Polyps, Crohn's Disease, Irritable Bowel Syndrome, Ulcerative Colitis, Epilepsy, Post-Viral Syndrome, ME, CFIDS, CFS (Chronic Fatigue Syndrome), Autism, Contact Dermatitis to detergents, Psychiatric reactions to foods, Ankylosing Spondylitis, Systemic Lupus Erythematosis.
See below also: What is the success rate? (Top EPD FAQ).
EPD is not currently developed for treating aspirin or other drugs. EPD can be beneficial for some food coloring agents, food additives, and molds even though not all of the many possible exposures are possible to be included in the preparations. EPD seemingly will not work on raw carrots, raw apples, pesticides, and herbicides, where these are the persons only sensitivities. However, reducing other sensitivities by treatment will lighten the load to the point these items may no longer pose a problem.
There are mixtures for inhalants (e.g. dust, dust mites, pollen, animal dander, etc), foods, and mixed common chemicals, as well as formaldehyde. Based on the patients symptom's and history, the doctor determines the appropriate ones to use. These may be given together as one shot, or more commonly, administered separately, using both arms. This is why some people may receive one, two, or three shots.
EPD is being developed for mosquitoes, wood, laboratory animals, detergents, and a few other odds and ends. These are seeing limited use. Very early research for bee venom and stinging insects are in progress.
It has been seen that EPD can produce favorable results on occasion even for allergic items which are not included in the shot mixes. Relatives of shot mix inclusions may be enough exposure to clear a related sensitivity. Additionally, there are cases where just the right amount of body exposure residue can exist where the injection of the beta glucuronidase, as a part of the EPD shot, will make a useful mix even though the sensitizing agent was not injected as a part of the shot.
On Aug 1, 1999, Nicolette M Dumke <dumkemn at juno.com> was in a discussion which identified the dose names of some available EPD mixes:
The mixes I know about right off hand are:
X-theta - low dose foods, inhalants, molds, bacteria, Candida, etc.
XE - higher dose of the above
IC - inhalant concentrate
T - terpenes (covers perfumes, gasoline, etc.)
F - formaldehyde
PK - Proteus-Klebsiella
B - Bacteroides
OE - odds and ends - library dust, etc.
W - woods
On Feb 24, 2005, Heather <Tsasha007 at aol.com> described the ingredients of EPD mixes:
Dear all,
For those of you who missed it:
Inhalant Mix - 1C Mix. There are two main mixtures used. The Inhalant Mix (1C) contains most of the allergens we normally breathe in. It includes the following:
House dust mite, fleas, gnats and other mites (11 types)
Tobacco, house dust, mould spores (50 types)
Grass pollens (9 types)
Tree pollens (19 types)
Conifer pollens (6 types)
Flower and weed pollens (14 types)
Shrub Pollens (10 types)
Cat, dog, horse and other animal danders (14 types)
Food and Inhalant Mixes - X0 and XE mix. The combined Food and Inhalant Mixes (X0 and XE are different strengths of the same vaccine) contain the following:
All of the above
A wide mix of common foods in the average UK diet (58 types).
Food additives (10 types)
Gut micro-organisms (18 types including Candida)
Respiratory tract micro-organisms
Each of the many natural chemical compounds that are suspected of causing food allergy is common to a range of foods. For this reason, the range of foodstuffs likely to be covered by this list is very large.
Special Mixes. In addition there are a number of special mixes that can be added for patients with known allergies outside the cover of the two basic mixtures:
Wood Dusts Mix (17 types)
Odds and Ends (various plant and animal debris, algae and extra moulds)
Mosquito
Animal Mix (Mouse, Rat, Guinea Pig, Rabbit, Hamster, Gerbil)
Proteus & Klebsiella Mix (gut bacteria implicated in some kinds of arthritis)
Oil-soluble Mix (volatile chemicals)
Formaldehyde
Heather
3.7 What is the success rate?
[Section Updated: 9/97]
There are so many studies, so many treatment symptoms, and so many cause and effect conditions that it we can't begin to identify them all here.
It was reported in 1996, that over 85% of the patients who have followed the protocol have permanently stopped the successful treatment after 16-18 shots, with no recurrence of the symptoms.
Of the seemingly failures in the generally observed population, 10% will feel better than they ever have since their allergies started, but for some reason require an annual "booster" to maintain a symptom free status. These patients are receiving significant reduction of symptoms but are unable to fully stretch out the period between shots or to stop them with continued success. Some patients may admit they have not followed the guidelines and rules for one reason or another. The remaining 5% are true failures for which no results, or insignificant results, have been seen. Studies are still in progress and perhaps will help to identify additional sources of the failure mechanisms. One good possibility is that gut problems may have not been fully dealt with, including: Candida overgrowth, leaky gut, parasites, or other gut dysbiosis. People with these uncorrected problems could move into other EPD better response categories with treatment of the specific problems. Another possibility being questioned is whether or not mercury fillings (dental amalgam) in teeth have an effect on EPD action.
After two years (late 1995) of the IRB/FDA study, unconfirmed reports indicate 55 conditions had been reviewed and the overall success rate was reported between 76-84% (percentage of error included). A 50% reduction in medications have been suggested by the study group, on the average. Many of the conditions appeared to be responding at a rate above 90%. The conditions for which a statistically significant number of people reported greater than a 25% improvement in symptoms included: Food or Food Chemical (not IgE), Perennial Rhinitis, MCS, Mental Confusion (brain fog, spaciness, etc.), Headaches, Chronic Fatigue (not "classic"), Candida Related Complex (respond to antifungals), Seasonal Rhinitis (hay fever), Allergic Conjunctivitis, Multiple Complaints of E.I./PIMS (Psychological Irritable Bowel Migraine Syndrome), Year Round Asthma, Migraine/Severe Headaches, Non-Specific Arthritis/Joint Pain, Gut Fermentation (bloating after most meals, especially sugar), Muscle Pains, Irritable Bowel/Spastic Colon/Chronic Diarrhea, Eczema (Dermatitis), Chronic Face Ache/Sinus Pain (not proven by X-Ray), Immediate Food Allergy (IgE), Chronic Sinusitis (proven by X-Ray), Hyperactivity/ADD/ADHD, Repeated Ear Infections, Constipation, Repeated Chest Infections, Plugged Ears (mod. severe), Depression, Chronic Vaginal Symptoms, Urticaria (Hives), CFIDS/CFS/ME with history of sudden viral onset (healthy prior), Angioedema (lips, face or tongue), Emotional/Behavioral Problems, Contact Dermatitis, Post Nasal Drip (chronic or severe), Urinary Tract Symptoms (not due to infection), Insomnia (mod. severe), Chronic Anal Irritation/Itch (not caused by hemorrhoids), Chronic Cough, Nasal Polyps, Secretory Otitis Media, Rheumatoid Arthritis, Asthma (seasonal). A few additional conditions have shown a greater than 25% improvement but were considered statistically insignificant due to the low number of people reporting on such symptoms. The conditions which need further observation for statistical significance include: Pruritus, Epilepsy, Ulcerative Colitis, Ankylosing Spondylitis, Crohn's Disease, Hyperventilation Complex. [Editor - This data and additional data is available in the Mastering Food Allergies newsletter #88. This data cannot be construed as FDA approval or disapproval as EPD is being studied.]
In the DePaul Study of 1994 [Editor: no direct reference to the study source or published report available], EPD was reportedly the highest ranked of all immune system /anti-viral therapies surveyed. When compared to over 50 current treatment programs it was ranked second highest as "enormous help" behind IV gamma globulin and ranked first over this treatment on an over-all rating. The De Paul study was conducted on patients with "MCS", "Chronic Fatigue Syndrome", "fibromyalgia", and "electro-magnetic sensitivities" for which the patients had failed to get well with ANY previous form of treatment. Perhaps the study results are skewed towards a low effectiveness rating by the patient base, but nonetheless, some of these people who saw relief had exhausted most other treatment options.
As more "general population" participants are involved with the studies (as opposed to the very tough, last resort, cases) the results are statistically improving. Additionally, as more people are reaching the end of the usual 3-5 year treatment term, and the statistical analysis covers the long term data, the positive results are adding favorably to the overall success statistics.
It may be noted that people who are finding relief from conventional treatments have no need to try the less known EPD. Hence, EPD is likely being used on the "hard" cases where other treatments have not been as useful as desired. With this potential "hard case" factor not extrapolated into the results, the true results for the general population may even be better than the studies show. This is an unknown, but likely favorable consideration in any event.
3.8 Are there other upside considerations?
[Section Updated: 6/97]
A wide range of co-existing conditions, besides the patient's allergies, appear to respond to the EPD allergy treatment. Some of those conditions that respond favorably have no other forms of effective therapy, so the indirect approach of treating the patient's allergies may in fact be the most beneficial decision for such patients.
EPD may be the only treatment effective against a broad range of food allergies. Avoidance is a common approach otherwise and sometimes incorporates food rotation schedules.
Some 60% of the patients see some favorable results from the first shot. Most have seen some favorable results among the first 3 shots. These results may be marginal in the early stages but improve in strength and length with subsequent shots.
After 6 or 8 EPD shots, very often the shot cycle can be stretched out from the initial 2 month cycle. The shot cycle can be stretched to 4 or 6 months, even longer. After 16-18 shots, 85% of the patients can permanently discontinue the program with no further recurrence of symptoms (fall 1996 statistical data). The remaining patients are treated at yearly or longer intervals.
EPD is very cost effective in many cases. This is especially true as the shots become spaced farther and farther apart until the patient only needs 3 or 4 a year, then for two years only once a year, then hopefully, none.
EPD can be used safely to treat patients who are extremely ill much more safely than any other forms of therapy available. Unlike many varieties of traditional immunotherapy, no life threatening reactions to EPD have been recorded since it's inception in the 1960's. Well over 300,000 doses [approximately 1997 year numbers] have reportedly been given. In England, traditional allergy shots are only allowed to be given in hospital settings where emergency resuscitation equipment is available for patients succumbing to a reaction (some 26 people had died prior to the law being put in effect). EPD, on the other hand, is allowed to be administered in doctor's offices. EPD injections contain a much smaller dose level of allergenic substances than the traditional allergy shots and are considered safe for very sensitive patients. Traditional allergy shots contain dose concentrations of between 1:100,000 and 1:10. EPD contains between 1:100,000,000,000,000 and 1:10,000,000, per the 1996 Pink Book, which is similar or less than the amounts used for diagnostic skin prick testing. Anaphylactic reactions to EPD serum could exist in theory, as with any injection, but the predicted chances are extremely low.
EPD is likely the serious anaphylactic patient's best hope of living a normal life. Such anaphylactic reaction-provoking foods include peanut, shrimp, crab, lobster, and less frequently, certain other foods. This is not, however, a license to go challenge your anaphylactic trigger food. But if the patient should encounter it as hidden food they would probably handle it just fine, or perhaps have a mild headache instead of the life-threatening total collapse they used to experience.
Undefined or unknown sensitivities can be treated without extensive diagnostic identification. Needed are only tests of a few foods, a few inhalants, and a few chemicals to establish a patient's reactivity to broad categories of allergens. This eliminates much tedious skin testing.
On May 29, 1997, Marge Jones <mastent at nidlink.com> replied to a question about the effectivity of EPD on MCS [Multiple Chemical Sensitivity]:
I had an opportunity to ask your question to Dr. McEwen at a medical conference I was covering as a journalist. Here's an excerpt from that interview, taken from Issue #88 of the Mastering Food Allergies Newsletter:
Question - What is the prognosis for the chemical "canary", WHOSE PRIMARY DIAGNOSIS IS MCS, but who qualifies for EPD because of some allergies? Do their multiple chemical sensitivities respond as well as the food and inhalants?
Dr. McEwen replies - "Their prognosis seems very good, indeed. My experience is in England, and we don't have such widespread use of pesticides in public buildings as you do, and I think formaldehyde is less of a problem in English buildings. Having said that, I find patients notice improvement in their tolerance to fumes first, perhaps after four injections, while they may have to wait another shot or two to gain back their foods.
"I notice another difference. When the patient has been in EPD for a year or so, and I realize the perfumes are more of a problem that I thought, and I add the fumes to their shots, then the next two shots may be rough. But by the third, they're better, and they stop noticing any difference. I don't see a fume sensitivity as separate from food, dust and pollen allergies. I see it as just part of the allergic picture, different aspects of the same problem."
Dr. McEwen put it another way in conversation. He said EPD was the ONLY modality of treatment for MCS with the potential for making people well again. Without it, severely afflicted patients have moved out of their own homes to live like a hermit, etc. EPD offers them the possibility of resuming a normal life again.
3.9 What are the side effects and downside considerations?
[Section Updated: 11/97]
The treatment does have some inconveniences in diet and environmental restrictions. Nutritional deficiencies, intestinal pathogens (such as Candida, parasites, bacteria, etc.), and hormonal dysfunction all need to be addressed, or EPD will be less effective, or perhaps fail to show any favorable response.
Side effects range from "none" to "as bad as you were without EPD or other treatments". About 20% of the patients see the side effects of a worsening of present or past symptoms. Reactions generally last 1-3 days but, on very rare occasions, have been seen to last past 4 weeks. For the long ones, see your EPD doctor to see if he can determine a method of relief. When seen, these problems generally accompany the first few shots and lessen as the treatments progress.
The good news is that there are no known permanent bad effects.
EPD does not mix well with other forms of immunotherapy. Neutralization usually must be stopped well before EPD starts. Other treatments need to be terminated before beginning EPD so the initial shots of EPD may have the patient at his lowest "raw" point. Patients may have to attempt to avoid all of their major allergens for this period. For patients who are "late responders" this may be many months down the road. For desperate patients, your doctor may be able to come up with some workarounds but they are still not always the best since many medications are known to interfere with EPD. This is a point to work out with your EPD doctor.
Patients will need to break the habits of a rotating food diet. Smaller amounts of many foods have been found to be better than large amounts of single foods ingested in a cyclical fashion.
Not following the diet restrictions and environmental restrictions outlined by the EPD doctor increases the likelihood of becoming more sensitive to the problem items for a period of time. The restrictions and requirements are aimed at maximizing beneficial conditions and minimizing detrimental conditions that could affect an EPD treatment's effects. For example, infections of any kind at the time of treatment--bacterial, viral or fungal--reduce or eliminate the benefits of a treatment. Your doctor may advise treatment postponement under such conditions. The patient guidelines in the Pink Book are there to be followed and must be followed. Another example is that some environmental exposures may leave enough allergen in your body to significantly alter the intended minute levels of allergen as provided in the controlled EPD mix. This increased body allergen level then becomes a hypersensitizing agent instead of a desensitizing agent. Your EPD doctor is the only person to decide where protocol guidelines might be reduced - ask him before changing the boundary!
The patient may have also had undiagnosed allergy problems and the diet and environmental restrictions were actually not set appropriately. He/she may become sensitive to any inhalants, foods, or chemicals. For this reason the doctors tend to err on the overly cautious side of the restrictions. Most patients do not know, and cannot name, all the sources of potential problems in their environment. Stick to the restrictions and err to the more restrictive side, especially in the first few shots. Sensitivity to pet dander is one item that catches some people in this way and inadequate environmental clean-up can cause increased problems with such things as dust, mites, and news print as well.
Sometimes patients with adverse responses quit the EPD protocol after such an event. Unfortunately they are doing themselves a disservice in that additional treatment will bring the positive results. Quitting after a negative reaction only serves to leave that allergy programmed into the system. It then takes many months (even a year or more) for the body to eradicate these miss-programmed T-cells when doing so without the aid of the next EPD treatment. The people who have quit EPD, before 6 shots are completed, tend to leave with this kind of "EPD made me worse" comments. A number of rumors have spread to this effect and they are most commonly from patients who have completed less than 6 shots. By the time a patient has completed 6 shots he generally has been through any rough spots that will be seen and will have seen favorable results.
On Jun 21, 1996, Jerry Straks <jstraks at switchboardmail.com> was writing a long story, of which this is a part:
Another "untoward effect", if you want to call it that: Once I could eat again [after EPD took affect], I found myself craving the things I could not eat for over a decade! :-) I ate too much of too many things that were unhealthy. It has taken a year, but that is wearing off now. I can willingly exclude things from my diet that I would be better off without.
3.10 Why do some people get worse before they get better? (masking).
[Section Updated: 2/97]
In some cases the full protocol may not have been followed or all infections may not have been eliminated. In other cases, while we are aware of no scientific explanation, EPD seems to "unmask" allergies or problems that were probably present but not as serious as those that triggered the decision for treatment. The "unmasking" seems to make them all equally troublesome. This is both good news and bad news. The bad news is that your life will be more complicated until EPD benefits start. The good news is that the EPD is indeed interacting with your immune system, indicating a high probability the benefits will also come. The bottom line is that you do not want to take EPD too lightly. It is a significant decision and requires a significant commitment to follow the protocol for at least the minimum time. It is not something in which to dabble for a little while and then move on.
Reportedly, Dr. McEwen has said:
EPD attacks the [allergy] matter at its root. Patients usually come to us eating a fairly restricted diet - often huge amounts of only a few foods - and many of them are "masking". This is a phenomenon in which a very allergic person does not react to an excessive quantity of their allergens - the immune system is just "swamped", or overwhelmed. These patients usually have more-or-less constant fatigue, muscle weakness or brain fag, so they know they aren't well. But when they are masking, they are not as ill as they would be if they ate less of their allergens. Also, they aren't able to make cause-and-effect connection with specific foods.
EPD therapy reduces the level of allergy so that now an excess intake of allergens no longer swamps the response and the patient doesn't mask any longer - he or she can now muster a reaction. So - now foods previously thought to be safe start to upset them. And the patient's perception of this unmasking phenomenon is that his or her condition has worsened. They are going to go through a phase where their diet is a bit of a muddle, and they aren't quite sure what they can eat. They may come out the other end (following treatment) being able to eat freely all of the foods they had been avoiding, and perhaps able to eat foods they had formerly considered safe, only in smaller quantities.
When patients unmask to Candida the same sort of thing happens. Their usual Candida load starts to make them ill, but now they find that antifungal treatment helps them instead of making them ill. After that, a few more shots of EPD are needed to desensitize them to Candida so they won't need to use antifungals any more.
[Editor - from Marge Jones' Mastering Food Allergies newsletter, #88.]
3.11 How soon will I get better?
[Section Updated: 9/97]
That depends somewhat on your body and on your ability to follow the treatment protocol. Most doctors apparently request a 6 shot minimum commitment before starting the treatment so that EPD has it's best chance of getting past any problems and into the best results. People are often reporting positive effects before the 4th shot. Early responses may occur within days of the shot, may last for a few days, and then diminish. Later shots generally produce results which are observed about 3 weeks after the shot and which last longer. When the improvements lengthen to the point that you're still feeling pretty good when it's time to start preparing for the next shot, your doctor will advise you cancel that appointment and make one for the next month. This is how you lengthen the intervals from every 2 months, to 3 months, then 4, and so on.
There are four general responses to EPD treatments. A few people see an "Immediate" reaction in the first few shots. These are seen in the hours or days following the shot and last 2-5 weeks for the lucky few. The "Main Action" starts 3-4 weeks after the shot. Although each shot stimulates T-cell production, (it takes about 21 days, more or less, for them to mature and become fully functional) the surge of well-being that usually occurs at that time may be too subtle for some patients to detect until around the 4th to the 7th shots. These people often report the effect is almost as noticeable as a "light bulb being turned on". Generally by the 6th shot, most people are noting favorable response from the treatments. The "Late Response" occurs after 8-12 injections, where the earlier ones seemingly had no effect or a negative effect. For this group of people, suddenly one of the shots works well and treatment continues. A "Postponed Action" can occur 10-20 months after no apparent improvement and the shots have been stopped. The cure is often permanent but it also has a tendency to be confused with whatever other treatments are being tried at the time.
About 60% of the cases will note some positive responses, though perhaps minimal, sometime during the first 3 injections. By 6 to 8 shots people are generally seeing positive effects lasting around 2 months. Very severe illness may take 2 1/2 years to work, but these cases are very rare.
3.12 Is the EPD protocol hard to follow?
[Section Updated: 2/97]
That depends on what protocols you currently use to control your health. For people with serious problems it will certainly be different, but likely not a problem. For people with little to no restrictions, it will appear to be challenge, but after one or two shots it will become a routine that is not tough to live with.
The protocol basically revolves around a few principles. Avoid foods and environmental factors to which you know you react, or are easily acquired, or might interfere with the therapy. Oily substances, added to the skin, reduce the ability of the injection to be absorbed. You will be put on a schedule of "Do's and Don'ts" with daily check marks (things to do), x's (things to avoid), and notes defining the most effective regimen for getting EPD to work. Covered are such things as: diet, supplements, dental treatments, contraceptives, medications, extreme heat and exercise, pets and animals exposure, pollens, dust, mold, newspapers, paints, nail polish, chemicals, air fresheners, scents, perfume, smoke, business machines, toothpaste, deodorant, ointments, lotions, makeup, bath soap, shampoo, dish soap, laundry soap, stress, drugs, medications.
Actually, breaking some old habits may be a bigger problem than getting into the new one's. Eating large quantities of single foods, or eating in a rotating diet, has a detrimental effect on the EPD process. Food patients who are coming from strict diets may find the family routines at the dinner table are tough to break, especially during the transition where new foods have not yet become available as a result of EPD benefits. At such a time the doctor may suggest the patient use the Very Mixed Diet (VMD) to help get enough to eat until the EPD kicks in.
3.13 What are the critical periods?
[Section Updated: 2/97]
Most of the above "Do's and Don'ts" will be particularly important during the "critical 3 days". These 3 days are the day before the shot, the day of the shot, and the day following the shot. The second day following the shot is some times included as a fourth day. As people improve they may, with their doctor's permission, be able to reduce their observation of "the critical days" to 24 hours before and 24 hours after the shot.
The "Do's and Don'ts" chart found in the 1996 Pink Book has restrictions identified for the entire period from 11 days before the shot until 28 days following. Most of the problem x's for most people occur in the week before the shot and the week after. These include food restrictions (easier than the critical 3 days), caffeine, and medications.
3.14 Where in the world is EPD available? How wide spread is it?
[Section Updated: 2/97]
EPD has been administered in England, Canada, Germany, Norway, Italy, some other European countries, New Zealand, and the United States. There may be additional countries as well. Over 60 U.S. doctors have been trained in the technique, so it may be considered wide-spread, but access is still limited by the sheer numbers of doctors using the technique.
3.15 Can any doctor administer EPD?
[Section Updated: 11/97]
No. Physicians need to participate in a short, but very important course of training before they can obtain the necessary supplies. Doctors doing food and chemical EPD need additional training in dietary considerations and gut preparations in addition to the EPD training. Prospective patients will have to continue to seek a doctor that they can get to, who is trained in the technique. All United States EPD physicians will also be participating in the IRB study, so the medical records of all of us receiving EPD, at this time in this country, will be included in that study, anonymously of course. (We're helping to make history!)
A potential problem is that the EPD serum is not stable unless handled in a controlled manner. There are techniques of handling the vials of serum and drawing the ingredients into the syringe that are required to avoid contamination. There are also temperature considerations and the serums are shipped from the manufacturing source overnight in iced containers. The EPD vials have a limited life, even in controlled circumstances, once they are opened. These would preclude us commoners from doing shots on ourselves because of EPD reliability and cost issues. It is also a consideration that the doctors office meet the requirements for use.
3.16 Is there an EPD doctor near my town?
[Section Updated: 11/2011]
[Following Updated: 11/2011]
Dr. Shrader and LDA web site includes a list of LDA physicians for the USA.
[Following added: 11/2011]
At the BSEM (British Society for Ecological Medicine www.ecomed.org.uk - there is a list of some of the EPD doctors in the UK.
[Following added: 11/2011]
In the UK, try contacting the Friends of EPD for a doctor reference.
[Following Updated: 04/02]
In September, 2000, it should be noted that patients that have never started EPD may not be accepted into the EPD program in the USA. In 2001 all treatment in the USA were stopped until the FDA paperwork was completed to the satisfaction of the FDA. The EPD approach is unique enough that it apparently doesn't fit the existing paperwork structures well. The EPD principles, working with the FDA, are apparently reviewing current law and paperwork submissions to determine the next steps for EPD research. Check with your EPD doctor for the current status if you wish to begin EPD. Some USA doctors may file hardship paperwork and thereby admit new patients.
Some USA doctors may be willing to treat patients under FDA Personal Importation guidelines. However, the patient must inquire and drive the process. It appears Personal Importation cannot be offered by your doctor or both the doctor and EPD suppliers may be considered outside the bounds of FDA restrictions for solicitation of unapproved treatments. Only the patient can ask an EPD doctor if is willing to support Personal Importation. The doctor can find further current importation information from the EPD source. Not following proper guidelines can impact any or all EPD treatments in the USA, now and in the future.
See also: Is EPD considered experimental? Is it approved by the FDA? (Top EPD FAQ).
The American EPD Society web site (if it is up) may contain a list of participating EPD study doctors or at least instructions on obtaining the names of doctors close to your location. Check here first. This source is the most accurate and up-to-date list available for the USA. See below for the UK.
A slim alternative is to search the EPD Mailing List Archives using your town name or near big city names and see if any previous responses have been posted. One of the mailing list rules has been to never post the name of a doctor (to protect any privacy wishes he may have) so this is a very slim chance.
A fair alternative is to ask the EPD Mailing List if anyone knows of a doctor in your area. Members may know of doctors and should send a response via private Email. It is very helpful, when making your request, to ask that responses be sent via private Email. TO PROTECT THE DESIRED PRIVACY OF EPD DOCTORS, DO NOT POST DOCTORS NAMES TO THE EPD MAILING LIST.
To confirm address and phone numbers, American Academy of Environmental Medicine (AAEM) includes a searchable referral database and allergy information from the view of Environmental Medicine practitioners. Note that EPD Doctors are generally a member of AAEM but not all AAEM members are EPD Doctors.
Failing these, to obtain the names of two or three U.S. or Canadian EPD physicians closest to you, send your request with a $10 check or money order with a self addressed stamped envelope, to:
The American EPD Society
c/o IRB Study: Physician Inquiries
141 Paseo de Peralta, Santa Fe, NM, 87501
It would help the Society staff make the best selections for your location if you include the names of near-by large cities. This source will have the most complete listing for the USA and Canada.
Note that there has recently been an FDA hold in the USA on accepting new patients into the USA EPD study. So the first question is as to whether the prospective doctor is accepting new EPD patients. If they will accept new EPD patients when the FDA permits. If they will accept new EPD patients even if the FDA continues the hold. If they will accept new EPD patients under FDA Personal Importation guidelines. If they will accept new EPD patients which are willing to travel out of the USA to receive the actual EPD shot.
On January 17,2002, Heather <Tsasha007 at aol.com> provided a UK reference:
If you go to the website: www.bsaenm.org.uk (dead? 03/21/2011), this gives a list of all doctors in the UK and Ireland who do EPD. [Editor: see page http://www.bsaenm.org.uk/pract.html (dead? 03/21/2011) for the key to determining EPD practicing physicians. Some things at this site imply that it may not be fully up to date.] [Editor: Web site more recently may be http://www.jnem.demon.co.uk/.]
On March 17, 2000, Louise Jarman <lou at louisej.free-online.co.uk> provided info for finding EPD doctors in the UK:
If you ring the British Society for Allergy, Environmental and Nutritional Medicine. Tel No 01547 550380 they will send you a list of doctors practicing all kinds of Nutritional Medicine, including EPD and Neutralization. [Editor: try web site http://www.jnem.demon.co.uk/]
On May 12, 2000, Sue in the UK <Sue at CADMORE.DEMON.CO.UK> provided info for finding EPD doctors in the UK:
There are about 12 doctors across the UK who practice EPD. There is a list up at Dr. McEwens. If you want a number, ring there on a Tuesday or Wednesday (the only days the clinic is open) and talk to Brenda the nurse there. Tel: 01491 576314.
3.17 What is the cost of EPD?
[Section Updated: 1/01]
As of February 1997, people on the mailing list have reported the cost of EPD in a number of ways and of course reported different charges depending on the doctor. As one example, one 8 week cycle may look something like this: $73 for shot office visit and follow-up office visit (likely covered by insurance), $200 for the EPD shot (may or may not be covered by insurance), $144 for vitamins and supplements (likely not covered by insurance). The total for this patient was $417 for each shot and 8 week cycle of supplements. Special foods for the diet have not been calculated, but you are going to eat anyway, so the differential is not great. Some doctors may do additional testing before beginning with the EPD series, so talk with him about what he thinks would be necessary in your case. Typically there is no point in doing new allergy sensitivity testing since EPD treatment is not based on selecting specific serums or dose levels. Simple hay fever (NO problem with food or chemicals) may not require the supplements and may only need shots a time or two per year.
Note that the above example, based on some comments received, may be fairly representative of the high side costs. A number of people have reported somewhat less costs in late 1996 for the 8 week shot cycle. For example, Jerry Straks said he paid $200 for the shot and the office visit, plus $40 for the vitamins and vitamin B-12 shot. This was every 3 months for 9 treatments.
Note also that the economy becomes greater as the intervals between shots grow.
Considering the health benefits, and the other costs of other treatments, EPD may well be very cost effective. Considering the cost of most medical procedures for problems which are treatable by EPD, insurance coverage notwithstanding, EPD may be very cost effective. Over the long term comparison, EPD holds a ray of hope to stretching out the treatments and possibly being able to get off of them all together. Many other treatments only offer reduction of symptoms, not a "cure". Consider the health benefits, and no cost, if/when they are no longer needed! With the good-to-excellent results that have been documented, EPD is more effective - and more cost effective - than almost any other modality of treatment. This is especially true when people have been going from doctor to doctor, trying anything that sounded promising, looking for relief from their symptoms - sometimes for decades. Don't get hung up on the cost issue alone.
For patients concerned about the cost, it is wise to inquire of your EPD doctor about each of the items mentioned: office visits, lab tests, shots, supplements, tests and preparations.
On Jan 25, 2001, Hilda <hildasimmons at home.com>, updated with:
Yes, my shot is $300. That is just for the shot. No I.V. or anything else. (I can't take the I.V. of vitamins/minerals...made me sicker.) I live in the Dallas/Fort Worth area and see a doctor in the area.
3.18 What is the difference between the USA (Dr. Shrader) protocol and the England (Dr. McEwen) protocol?
[Section Updated: 09/06]
EPD is no longer used in the USA as importation was stopped by the FDA in 2002. LDA is the closest USA equivalent available and follows similar treatment protocol. EPD is currently in use in Canada, Europe, and a number of other countries.
The following is text from pre-2002:
First it should be said that the two doctors do not make anything of the minor differences in their protocols. Regarding 2 month vs. 3 month intervals between shots (for beginners), McEwen just reportedly shrugged and laughed and said, "You Americans are an impatient lot!". The two month interval may offer promise of earlier data for the study or perhaps is better for the statistics. In effect, what is reported in this section may be interesting in understanding different people's comments but are basically non-issues.
On Oct 21, 1996, Jozsef A Toth <jtoth+ at pitt.edu> wrote:
When I was at the Dr. office getting my injections, the "Official" EPD Dr.'s guide dated Sep. 1996, authored by L McEwen was available for me to browse. I scoured the pages that were of interest to me and came up with the following nuggets that are not present in the Pink Book (remember McEwen (in UK) and Shrader (in USA) differ on certain aspects of the protocol.
--- in UK, frequency of shots is every 3 months, in USA every 2 months
--- Vitamin C: 3 grams daily for 2 weeks before, .5 gram daily for FOUR weeks after, and 1 gram daily for the rest of the time.
--- Cross reactions: all grains cross-react, so it's a good idea to stay away from all grains, if you have any allergy, for the week before and two weeks after. Banana, oranges, and other kinds of fruits were also mentioned, also nuts. [Editor - this part of the copy does not appear to differentiate between protocols but appears as a general comment from the source.]
--- Although in Pink Book, regular [white] potatoes should generally be avoided for 24 hours before until 24 hours after the shot. During this critical time, the diet should be kept to the absolute bare minimum involving only the simplest and least allergenic of foods (e.g,. lamb and sweet potatoes.) Glycerin, fructose, etc. were mentioned for the most sensitive of patients taking small doses every couple of hours during the 24 hours before and 24 hours after.
--- In general, the "critical period" is defined to be the 24 hours before through the 24 hours after (UK) as opposed to the day before, day of, and day after (USA). I assume that the latter is probably the default in either case; just to play it safe.
--- If chemically sensitive, "Whiffs" of chemicals/perfumes/etc. will probably not upset the treatment, sustained exposures will. [Editor - this part of the copy does not appear to differentiate between protocols but appears as a general comment from the source.]
--- During the critical period, 30 mg. doses of hypoallergenic caffeine (UK) 50 mg. (USA) can help with the headaches. Some other drugs were also mentioned, the ones that are articulated in the Pink Book.
--- Various response curves over a 3 year period were shown (with 3 month intervals of treatments). There were two primary types that I can recall, which are also shown in the Jan. 96 Edition of the Pink Book; which I cross-referenced when I could while I was scouring. The first curve shows an immediate improvement after the first couple of shots (25-50 percent better) and then uphill from there. The second curve shows a gradual improvement after 1.5 to 2 years. In either case the asymptote [near flat line end portion] of the curve is after a couple of years at 75 to 100 percent better. These curves are based on self-reports of presumably thousands of EPD patients. At least 3 other kinds of curves were shown with various "DIPS", but I can't remember the specifics. All of the curves end up with the same result after a couple of years: 75 to 100 percent improvement. [Editor - this part of the copy does not appear to differentiate between protocols but appears as a general comment from the source.]
[Editor - Thanks for the sneak peak Jozsef .]
3.19 How do I decide if EPD treatment is for me?
[Section Updated: 2/00]
Do your homework. Learn as much as you can so you can make an informed decision. No one can make this decision except you and your doctors. Seek your doctor's advice! Seek an EPD doctor's advice! Unfortunately your current doctor may have never even heard of EPD so the final decision completely ends up to be your decision. Even if you choose not to do EPD after your research, it may be worth finding an EPD doctor with which to discuss your particular situation.
Having said that, here are some considerations: Are your allergies or sensitivities...
1. life threatening?
1. causing secondary (resultant) damage to other body organs?
1. continuing to get worse without any hope of otherwise known control?
2. conflicting with your ability to earn an income?
2. conflicting with the desired operations of your family or household?
2. a negative impact on your year round life style?
2. being treated by treatments that are marginal or ineffective?
2. producing long term symptoms that are difficult to treat?
3. from so many sources that it's hard to treat each one?
3. causing so many problems or symptoms that it's hard to treat each one?
3. costing more to treat currently than the cost of the EPD treatments?
3. being treated by methods that are harder to follow than the EPD protocol?
3. treatments holding any promise of being stopped without recurring symptoms?
3. expecting to be seriously impacted by a relocation, new house, new office,
new job, new environment coming in the future?
4. a nuisance to your ability to earn an income?
4. limiting your ability to pursue discretionary or fun activities you desire?
4. covered by your insurance (is EPD covered)?
4. a nuisance to your life style more so than the EPD treatment protocol?
4. bad, but holding steady with current treatments?
4. causing recurring problems which are treated but then return?
4. aggravated by a broad group of sources, even though the symptoms are not
severe.
4. current treatments worth giving up for an 80% chance of 80% improvements
or better by EPD?
5. treatable with a few antihistamines, decongestants, or other drugs?
5. seasonal or only lasting for a short time.
5. avoidable by staying away from a few foods, chemicals, or inhalants.
In this list of questions, the earlier you started to answer "yes" the more likely you should consider EPD treatments. The entries have been roughly grouped by considerations of: major health, health and lifestyle, cost versus need, nuisance levels.
Finding an EPD doctor may be a determining factor to deciding to do EPD in some locations. See also above: Is there an EPD doctor near my town? (Top EPD FAQ).
In England traditional allergy shots (immunotherapy) have been legislated to only be administered in hospital settings where emergency resuscitation equipment is immediately available to handle problems such as anaphylactic shock. EPD, not having a history of provoking strong reactions, is freely used in doctors office settings.
If you would like some "non-scientific" EPD stories including successes, struggles, and failures, a collection may be found on this site.
3.20 Will EPD affect my ability to work?
[Section Updated: 2/97]
There are two considerations here. Avoiding potential problems and becoming sick from the shot.
On 11 Jun 1996, MARTHA RALL <mrall at kumc.edu> said:
EPD should not interfere with your ability to work, unless you get some unusually SEVERE side effects with it. If you work in a moldy or chemically laden environment, you may need to take 1-2 days "off" [holiday] during the critical 3 days surrounding EPD. I get my shots usually Saturday morning, so I can be "sick" [on holiday] Friday, Saturday & Sunday.
On Jan 27, 1997, Marge Jones <mastent at enaila.nidlink.com> said:
Based on personal experience, I would have to answer, "It might, especially early on". I don't think I had an especially severe reaction as the quote from Martha Rall suggests, but I was a limp rag doll without energy for two weeks following shot #3. Bummer. It was the only one to hit me that way. I could not have worked at a job - yet it wasn't considered a "severe" reaction.
3.21 What is LDA? Is it like EPD?
[Section Updated: 2/00]
On May 15, 2002, Laura Toms <laura at lauratoms.com> commented on a possible EPD USA alternative being created Named LDA (Low Dose Allergens):
I did some research and found out some interesting things that may prove to be tremendously good news to all of us in the US, and I verified that it is OK to post this information to the EPD list.
Dr. Shrader has been working for the past year on serum based on FDA approved materials, quite different than EPD, but using his best judgment based on his experience. It's called LDA for Low Dose Allergens, has a different base and different blend of allergens, all of which are already FDA approved and perfectly legal in this country. The mix includes more foods and perfumes, I understand. It's being compounded by a pharmacy in the US, and depending on the results of the preliminary tests, it may become available soon for general use in this country.
The good news is that the first round of tests looks quite impressive, with more positive results even than EPD. They do not have longer-term data on it, though, so they are being cautious for the moment. It should also be less expensive than EPD, and while I don't know this for sure, I would assume that most insurance would cover it since it's comprised of approved allergens. This is all very good news.
Longer term results will be evaluated within the next few weeks, and if all still looks good, it should become available through your physician.
The EPD trial for simple hay fever allergens is unaffected. This effort will go forward as planned. Typically it takes more than 5 years for a new product to get through the FDA's approval cycle, however, so it may be some time before EPD is available here.
There is, I gather, some tension between US and European forces over the development of LDA. That's certainly understandable. I would ask everyone to be sensitive to this issue. We owe a tremendous amount of gratitude to the McEwens for their development of EPD. For people who live in the US and want to continue with EPD, they can continue in Canada as they have done so far.
My own allergies have continued to get worse and worse since I had to quit EPD 3 years ago. If LDA becomes available soon, I will be one of the first people in line to get it. [Editor: I wonder if the terms "Generic EPD" and "USA EPD" refer to LDA.]
On May 28, 2002, Laura Toms <laura at lauratoms.com> added information, reportedly provided by Dr. Shrader, concerning LDA:
LDA is not much like EPD. I chose many different components at different concentrations than those in EPD. There are many additions and subtractions, and I revised all of the mixes, both as to content and the various concentration of individual components quite considerably. The activator can no longer really be considered to be the beta glucuronidase, although it is present. College Pharmacy obtained the components in the LDA from pharmaceutical sources. I did draw at least upon the theory published in Dr. McEwen's and Dr. Eggar's papers to produce LDA for my patients.
The material appears to be significantly more "reactive" than EPD was, immediately and in the first week after it's been given, since the skin response is quite pronounced in all patients, unlike the very minimal skin response patients had when given EPD. This skin response cannot be accounted for by the strength of any single component, since doses of each component are far, far lower than could even theoretically do this. So the reason for this remains unclear. In the several months I've been using the material, my patients have not experienced any adverse side-effects. The short term pattern seems to be present, yet it's still too early to be certain of the longer term pattern. This early response pattern is one difference I was trying to achieve, since I had no desire to "copy" EPD. A long term response pattern could occur, but if and when it does, I won't really be able to discuss it other than in discussions with physicians.
You must remember that this material is not a commercial product like EPD was, but it must be compounded specifically for my patients by College. I must write a prescription for my patients who receive LDA. I asked College to compound LDA specifically for me to use for specific patients. Certainly, if some other physicians trained to use this type of ultra low dose material wish to use it, by prescription, for their patients, they would likely be able to do so. However, neither I nor College can "promote" LDA, nor can I make any claims in regards to its efficacy, since this is a compounded product and not an FDA-approved product. There's a big difference.
I hope this clarifies what we're doing. It was my hope to offer those patients who lost their EPD something that might be a viable alternative. Only time will tell whether this might be true. Thanks for asking me about it.
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4.1 Do I have to go through a lot of testing before beginning EPD?
[Section Updated: 11/97]
Most doctors will do some testing and will certainly record your history to determine if indeed you have allergies to pollens, foods, and/or chemicals. Generally, it need not define all the specifics but simply determine categories so he can pick the EPD serums for your case. Traditional tests may be used where available. Alternative tests are possible if desired. Much of this depends on the doctor and how much he wants to document. EPD is being studied primarily as an allergy treatment in the USA even though there are quite a number of other immune problems that are significantly helped. Hence, the doctors records will likely include some allergy details and test results should his records be called for medical review.
Depending on the doctor and the patient case, some doctors may also do some testing for parasites, Candida, yeast, or other gut problems which may interfere with the EPD treatments. Other doctors, or in other cases, the doctor may delay these until EPD is not producing good results and then go looking for the interference.
4.2 What can you tell me about the actual EPD injection?
[Section Updated: 11/97]
In the U.S. EPD is generally administered by a shot injected sideways just under the skin on the inside of the forearm. The needle is inserted sideways, so the shaft is almost laying flat on the skin. The serum is injected just under the skin. This leaves a welt not unlike a large mosquito bite which subsides in a half hour or so. The needle is quite small and feels like a mosquito bite or a bit worse. The serum is of small volume but produces a bit of a sting which feels much like a deep paper cut. In a few seconds the pain subsides. It is a bit unnerving for children and makes most adults wince for a short period of time. Fortunately it is quickly over, though a few people have noted it lasting up to 2 minutes.
Some patients and/or physicians prefer multiple shots instead of mixing it all into just one injection. That is, they may put the basic EPD mixture in one arm and additional Inhalant Concentrate, for example, in the other. Patients with severe chemical sensitivities may also elect to have a separate injection of formaldehyde. As time goes on, variations may evolve in the basic technique.
For some patients with anaphylactic problems, and for a few other cases, a "cup" method is used. This technique includes a light scratching of the skin and affixing a small funnel shaped device to the skin surface. The EPD serum is dropped into the cup and absorbed into the skin through the scratched area.
The minimum spacing between EPD shots is 8 weeks. Doctors will generally start on an 8 week or 12 week cycle. Any closer than about 7 weeks will produce complications and perhaps increased sensitivities. After a while, maybe 6 shots, the EPD effect lasts longer than the 8 weeks and shots are postponed for longer periods. Eventually they stretch to 6 months or a year and perhaps to the point of never needing another. The "normal" routine is something like 16-18 shots over about 5 years, close at first, spread at the end.
The shot is done at the EPD doctors office. In part, the doctors want to see the patient and be aware of any problems or potential problems so that EPD is not miss-used and the protocol is being followed. Being in the office helps to keep the FDA/IRB study database information as clean and as reliable as possible. Possibly the EPD serum will only be shipped to approved doctors who have covered the requirements for the American EPD Society. Doing the shots in the doctors office also makes medical help available in the event of any reactions to the treatment.
Patients cannot self inject for a number of additional reasons. There is a potential problem that the EPD serum is not stable unless handled in a very controlled manner. There are techniques of handling the vials of serum and drawing the ingredients into the syringe that are required to avoid contamination. The serum is not protected by any preservative because the preservative would become an active element of the shot serum. Additionally, the included serum substances are of such small quantities that contamination may upset the balance or the contamination itself become an active agent in the serum. There are also temperature considerations and the serums are shipped from the manufacturing source overnight in iced containers. The EPD vials have a limited life, even in controlled circumstances, once they are opened. These would preclude patients from doing shots on themselves because of EPD reliability and cost issues.
4.3 I've had more allergy related problems, instead of fewer, since my last shot - what has happened to me?
[Section Updated: 11/2001]
You may have sensitized an allergy by encountering the trouble source during the critical period. In other words, intentionally or unintentionally, you have not followed the guidelines of "Do's and Don'ts". Perhaps you have encountered something you thought you were not allergic to but actually were. Now you are more sensitive to it for a period of time. Hopefully the time will not exceed a few days. Next time be more careful during the critical periods and even extend them. Some people see foods fall out in this fashion and extend the allergenic food restrictions for a week, 2, or even 3, after the shots. Environmental chemicals are tougher in this but should be considered as well if you have any reason to believe you are chemically sensitive. The EPD shot contains minute doses of many allergens. If you have significant environmental exposures near the time of the shot, your body may actually have much more of an allergen than provided by the EPD dose and hence the total is a hyper sensitizing dose instead of a desensitizing dose.
Possibly you still have yeast, bacteria, parasites, Candida, or other gut problems which have not been cleared with the pre-shot preparations. Some of these remnants may have produced your sensitivity and are still active in your gut. You may have to go through additional testing and more intensive gut preparations. If the gut dysbiosis problems are not covered, it is apparently possible to become sensitized to these organisms as an allergen. A possible tip-off to this problem is that the allergy symptoms have not seen any improvements even after 3 or 4 shots. Note that foods and chemical sensitivities may take longer. See also: Do I really have to take the gut preparations for fungus and the like? (EPD FAQ Index).
In some people it is apparently possible to "overdose" the EPD injection strength. For these reasons you need to discuss all of your symptoms, including the times they arrived and departed, as well as the severity of each symptom, with your doctor. Since the symptoms somewhat mimic gut problems it may take a review over a couple of shots to determine the root cause of such problems. One tip-off to overdose is having one or more favorable shot responses and then getting worse with successive shots. To check for this the doctor may postpone a subsequent shot and ask the patient to observe how the negative effects rebound or dissipate over the longer period of time. If a series of shots continues to make your symptoms worse, discuss with your doctor if you should be dosed at a level lower than the standard dose choices.
If problems are experienced within the first three weeks after the shot, they are generally not associated with the action of the main effect of the EPD shot. The main action of the EPD shot generally takes place about 24 days (plus or minus a few) after the shot. Noting a specific food sensitivity, for example, on day 18 may well be cleared by day 27 when the main EPD action has come into full effect. Struggle through the first 3 weeks as best possible and then observe the sensitivity again when the main effect of the shot is active.
A few people have noted that they get extremely drowsy (they casually noted the word "comatose") later in the day after the shot. After a long nap, and hard/sound nights sleep, they are in much better shape.
Some people get "flu" like symptoms which occur after the shot and subside within 24-48 hours. These problems may include local swelling at the shot site, feeling punk or low, maybe a low grade fever, diarrhea, upset stomach, migraine, fatigue, brain fog, depression, or hypoglycemia. For many people this is actually not a reaction to the shot but instead a reaction to the change of diet and EPD restrictions. Withdrawal from caffeine and coffee would be one typical example that would fit into this scenario. Other foods and allergens can act similarly. In any event, having seen it before, you can be ready to expect it and wait through it. If you want to test this theory on yourself, go through the EPD preparations and diet routines and note the results sometime when you are not scheduled for a shot.
It seems that kids under eight seem to have more problems with the EPD diet than the older people. Perhaps this is body related or simply that they don't eat as well simply due to the changes in routine.
A few people, reportedly very, very few, get the "flu" like symptoms delayed a few days to a week after the shot. This delayed reaction may even last 4 to 6 weeks and then clears. For those unlucky people this problem occurs on other shots and lasts for a longer period of time, generally up to 8 weeks. In these rare cases giving another shot at 8 weeks only generates the problem all over again. The doctor may delay the next shot to see if this sort of problem clears itself and EPD response flips favorable. The flip is a major swing from bad to good. This response has been unpredictable in the candidates affected or on which shots it may be noted (though curiously it seems more prevalent on shots late in the program). The doctor and patient just have to deal with it when it shows up and be grateful if the shot cycle is long so that a lengthy favorable response will be seen after the reaction clears. The good news is that it is very rare, and for people in this position, the delayed reaction is almost always a precursor to excellent EPD response.
Some people will unmask hidden sensitivities during the EPD treatment. See also: the Definition of Masking/Unmasking. (Top EPD FAQ).
Some people coming from a rotary diet think they are not sensitive to their list of foods when in truth the rotating diet has masked the fact they are actually sensitive to most or all of these foods. Breaking the rotation and mixing these foods before beginning EPD might have noted this as the problem instead of EPD being blamed the root cause.
As EPD progresses, your sensitivities may change. This occurs in the foods and is seen by many patients. If you've lost a food for a period, hopefully you've picked up some other. Food shifting generally is not seen after the 6th shot. A VMD or VVMD will usually help to survive such times.
People who have the Terpenes EPD mix (chemicals/fumes) seem to more often note bad reactions to early shots. The Formaldehyde mix relates to the next group of people with problems and these are followed by foods and then inhalants. This may simply be because they are more sensitive to more things. People who get Terpenes and/or Formaldehyde are often among the most sick and, of course, then the most sensitive to be upset by treatments of any kind. For people receiving the Terpenes, the first 2 or 3 shots may well aggravate the reactions. These reactions often show up as the "flu" symptoms in the day or two after the shot.
Perhaps the "season" has changed. Many people (even non-EPD sufferers) note that they lose foods during a time of high pollen counts or note other problems when their foods are acting up. These secondary losses are regained after other offenses clear. This is likely related to the total load of sensitivities that is being activated. In a sense, allergy responses seem to add up to more than the sum of the individual problems.
Life's little conveniences also can become EPD slip-ups. One Mailing List member noted she became sensitive to the slip strip on her under arm razor which was used during the three critical days. This caused an under arm skin rash. Using contact lens solutions is another habit that may cause problems if the patient is not attentive. Be sure to review the EPD "Do's and Don'ts" so you don't make a mistake. If in question - avoid it!
On May 21, 1997, Stan Rohrer <stan.rohrer at scitexdpi.com> commented:
Even though I followed the EPD routines in the 1996 Pink Book it seems that I became more sensitive to the supplements that were supposed to help EPD. The sensitivity showed up about 21 days after the shot (when the shot "kicked in"). It looks like I need to not start taking them so soon after the shot to avoid getting sensitized to them. When I finally figured out the connections to my fatigue and brain fog I noted they reacted much like my reactions to fruit, a known problem for me going into EPD.
On Oct 17, 1996, Jerry Straks <jstraks at switchboardmail.com> wrote:
My experience was that my symptoms became radically worse after my first EPD treatment. I became allergic to everything I had ever eaten. (This is no exaggeration. It was only through the Very Mixed Diet that I was able to stay alive!) They remained at that level for the first 4 treatments (12 months). On the 5th quarterly treatment, it was like someone turned on a switch after the 3-week careful time--I was suddenly well, but it only lasted 6-8 weeks that first time. After each remaining treatment (in the series of 9), the good period was either longer or the relapse before the next treatment was weaker. After my 9th treatment last spring, I have been able to eat anything I want--and I do! The only time I have problems is if I overdose on milk products, like significant amounts at every meal for several days. I am told I may have to have a booster treatment after 10-20 months. We'll see.
[Editor - Thanks for the long term report to help us get through the shorter term problems, Jerry.]
On August 4, 1997, Jozsef A Toth <jtoth+ at pitt.edu> provided his longer term insight:
I received my twelfth set of injections on May 12th, so it's been almost three months. I must say that I'm very pleased with the results so far. I am most pleased with the food and chemical allergies. I can eat whatever I want and there is little side-effect. Chemicals that used to really bother me only bother me a little bit now. The big disappointment is my inhalant allergies, as they seem to have neither improved nor gotten worse. I did have the dogs in the house, in the basement, this last time and I did not thoroughly clean the house, so it may be partly related to that. I will be getting my next shot in November and will have to put the dogs in the kennel as well as really clean the house. The fact that the big dog (a 50 lb standard poodle) likes to cuddle with my wife in our bed, on my side, and on my pillows, does not help matters (this occurs every night towards bed-time when she's in bed and I'm getting ready for bed and/or doing something else.)
I've been following those in the discussions who are not pleased with their progress after 6-8 shots. My progress was up and down during that period and the only thing I can say is to HANG IN THERE. I would strongly recommend finishing a course of 12 shots, then "giving up". The Pink Book seems to indicate that the magic number is around 12 or so, and after stopping, it can take a few months for the results to kick in. What I keep forgetting is how sick I used to feel before I began the whole EPD business in early '95. I am only reminded for the few weeks after the shots when I get the reactions.
Finally, I was forced into a program of exercise and weight lifting owing to problems I was having with my back. We have a 32 lb. 18 mo. toddler who is growing very rapidly. Lifting him really aggravated my back muscles. I've been exercising and lifting regularly (4-5 times/week) for the last two months and the results have been great. Some of my fatigue, stiff joints, lethargy, etc. was simply related to being out of shape. I'm not in shape yet---it will take several more months---but it's helped a lot so far.
On Oct 21, 1996, MVDS43A at prodigy.com (MR RANDAL K SPARKS) commented:
I have talked to quite a few people by phone and a fair number via computer who are doing EPD. THE SINGLE LARGEST COMPLAINT IS THAT THEY FEEL ABSOLUTELY TERRIBLE AFTER THE FIRST SHOT. Usually, the adverse response after the second shot is only a third to a half as bad and last for much shorter time. Some significantly noticeable, but not necessarily long-lasting benefit is apparent sometime in the fourth to seventh week after the second shot. Since EPD works by creating a large immune response to a very small dose of antigen (that is what the enzyme does), feeling lousy means things are going about right. The immune regulatory system looks around for what the fuss is all about, and finds nothing (the antigen doses are too low for regulator recognition). Then it creates a suppressor response to the activation. On the first shot, you have no pre-trained suppressor response, and thus will often feel really lousy. The doctors seem to "whitewash" this little fact, thus a lot of people quit EPD after the first or second shot because their doctor has painted too rosy of a picture. My doctor won't even start shots for anyone who doesn't agree to take them for at least ONE YEAR. I think that most of the people who feel lousy on the first shot are very likely to get good effect long term, but it really takes PERSEVERANCE. Also, most of the people I hear from have a period of "the blues" for 2-3 weeks after the shot, and that makes the physical discomfort all the more difficult. I am convinced that this depressive effect is a normal physiological consequence of the shot. For some it may be necessary to provide anti-depressants to help, but most can get by if they only know that response is at least common if not downright normal.
[Editor - Randal, Thanks for the paradoxical news. A bad reaction means EPD will most likely work in the long run.]
On June 25,1997, Stan Rohrer <stan.rohrer at scitexdpi.com> commented:
My EPD doctor warned me at shot #2 that, after seeing benefit from #1, shot #2 or #3 could be a "downer". Said that early in his practice of EPD that #3 was seen by a few people as a bad one, but as the technology has progressed it has shifted to #2 for those few people who did see problems. #2 was definitely my worst and the problems showed up about 21 days after the shot.
On Feb 1, 1997, Vivian Jepperson <duke at itsnet.com> responded to a discussion of EPD problems with:
....I was directly told by Dr. Shrader to be grateful for these little reactions...that means something is working...its a good sign.
On June 27, 1997, Susan Nordmark <athene at best.com> related a number of thoughts on EPD problems and kids:
Re: child "losing" foods after #2, back on more drugs, mother wishing for more foods and less misery for her child after #3:
Nancy, I've been very sensitive for many years and I just got #3 myself. I've lived with and adapted to a lot of restrictions for all these years, and my thoughts in response to your posting are these.
Your child isn't going to be cured right away. Don't focus on how you want to be. Focus on how things are now, and how to adapt to that in order to get the most out of life now. The foods don't sound like they're going to get tolerable real fast--in fact what it sounds like is that your child is not "losing" foods but getting unmasked to foods she wasn't really tolerating anyway; you just didn't know that before. That happened to me after #1, too.
You really have two choices. The first is to let your child eat whatever, and drug her up with lots of steroids and other drugs to cover up the illness created by all the foods that she and you choose to feed her. The same goes for how you clean and furnish your house--don't pay any attention to it, just drug up the child if her body gets sick from it.
The other choice is to severely restrict your child's foods to just the EPD foods and a few other carefully chosen and tested foods, and work with her emotions, being patient and compassionate and firm around how unhappy she is with those restrictions, and the two of you learn together how to ignore food as a fun aspect of life and focus on all the other fun things in life. That choice also includes radically cleaning your house, putting pets outside, getting rid of carpeting and rugs and moldy dusty things, and getting air filters and having her sleep with her windows closed and generally keeping particulates and pollens and mildew radically down in the house.
You really do have a choice, and so does she. She can be more sick, or less sick, depending on what she eats and how you fix up your house.
I started EPD in February. I unmasked to a lot of foods after #1 and I'm mostly eating cabbage family, greens, roots, and a few meats right now. No grains at all, dairy, coffee, etc. Long ago I had eliminated grains and eggs and dairy and fruit and sugary things and nuts. I really don't care about the restrictions because I feel better. It's true that I'm an adult and possibly more rational about the food thing, but everyone wants to feel better and it's a choice. BTW, pollens cross-react with foods and this spring the pollen reactions haven't been as bad for me, and I know it's partly because I've eliminated cross-reacting foods. So it's possible that if your child gets strict on her foods, her pollen reactions will be better also.
The other thing is the gut clean-up. Dr. Shrader and I have been aggressively using antibiotics before each EPD for me, and it's worked really well for me. So my feeling now is it's better to err in gut clean-up on the side of being more rather than less aggressive. You need to analyze the Great Smokies tests closely and take specific antibiotics to treat the major organisms. A lot of doctors aren't doing this.
I also take some type of antifungal drug all the time, not just during EPD. Theoretically this isn't so good because you can build fungal resistance, but I've been on antifungals for years and they make all the difference in my functioning. Then again, I've been very severely ill. But you may want to look into this. I've found that the resistance issue has been approachable by switching around on the antifungals periodically. You may not want to put your child on antifungals all the time, but steroids are bad too. Nystatin and Lamisil and antifungal herbs are less toxic than other antifungals. It's something to discuss with the doctor.
I guess my advice is, don't live in the future and what you hope to have then for your child. None of us can be motivated for long by focusing solely on long-term gains--we all need short-term motivators. Focus on the degree of power you really do have *now* to affect your child's level of functioning. She can be empowered to take actions that will make her feel better. She can't have everything--both breakfast cereal *and* freedom from steroids, perhaps. She can choose.
Be strong for her. Try to be a model of wisdom and calm for her to emulate with respect to her frustrations, rather than being swayed and restimulated and made to feel guilty that she has these restrictions and tough choices. Don't be cowed by her unhappiness and frustration! Her illness isn't your fault, and these restrictions aren't either. They're nobody's fault, but they're the Way Things Are and you can either live with it until things get better or be miserable. Lots of us learn to deal with restrictions and still enjoy life. It's a lot better than taking lots of drugs that don't even work that well anyhow.
On November 11, 2001, Jennifer <bprice at frii.com> continued a discussion on overdoses:
Hello! Based on Randall's findings that a half dose of X-theta works for him and now Edgar is feeling relief of his symptoms with a lowered dose, could it be that a small minority of EPD patients need a dose lower than X-theta? When gut problems are not found yet EPD continues to hyper sensitize despite careful adherence to the rules, might the doctor try lowering the dose beyond what has been commonly done? Just wondering if this might help with some on the list who are struggling with increased sensitivities after a year or more on EPD.
On November 11, 2001, Edgar <biervlietkramp at yahoo.com> continued a discussion on overdoses:
I guess you're right. When I called doctor Shraders office to get a confirmation of the warning I had read on the internet I was told that indeed this seems to be a problem for a minority of patients. I guess some people are so sensitive that their immune system can still trace the small dose of allergens used in the regular dose, hence the hyper- instead of desensization. I really think it might be important to spread the word so more people can find relief in EPD.
See also "What Are The Side Effects?", above. (Top EPD FAQ).
See also: "Why do some people get worse before they get better?"" above. (Top EPD FAQ).
4.4 EPD made me worse - shall I quit?
[Section Updated: 10/97]
After a bad reaction to an EPD shot IS NOT THE TIME TO DROP OUT OF THE EPD PROGRAM. To drop out after a bad reaction, it may take a few years for the body to relapse to the patient's pre-EPD conditions (restrictions and all). If the patient doesn't get another shot to stop the reaction process he will have sensitized T-cells running around his body - for a very long time. It would be a big mistake for the patient to stop EPD after a bad reaction.
Be sure to talk to your EPD doctor about the situation. For the short term he may be able to provide something that would help the symptoms. He likely has tools that can help with sensitivities, fatigue, depression, or other reactions. A bad reaction is often a sign that EPD will work in the long term. Do what your doctor offers so you can get on to the next shot and hopefully clear the sensitivity that has developed.
4.5 I'm having problems, can you cheer me up?
[Section Updated: 9/97]
How about some success stories by people who have been through the rough times? Some people note rough spots in the treatment cycles but eventually they get straightened out for very positive results. See below.
Line up a few friends who are sympathetic and have a basic understanding of your treatment program (so they don't do something stupid like bring in a cake for a surprise party) and solicit their comfort.
Leave a message on the EPD Mailing List. We have lots of people who have had their share of problems and can "discuss you through it".
Stress can have a negative effect on EPD. If you have a particular religious persuasion, use it to "pray through" the problems. Any positive thinking, prayer, meditation, relaxation, or other "boosters" certainly can't hurt. Plan ahead for some emotional "pick-me-ups", videos, rented movies, computer games, or Internet surfing. Find things within your limits to keep busy and not spiral into depression if you are prone to it.
On Apr 22, 1996, Jozsef A Toth <jatst3+ at pitt.edu> noted his attitude:
It's hard to believe that I'm almost on top of #8. Much less panic this time around Re: the three week restricted diet. I have eliminated caffeine this time as well. It's Monday and my shot is this Friday. It might be me, or my imagination, but I'm starting to approach each injection kind of like a "spiritual retreat". .... Having to purposefully avoid stress and to quarantine myself around the critical period adds to the notion of the "retreat".
[Editor - Seems Jozsef has found a way to mentally prepare.]
Check with your doctor, there are a few drugs that are allowed and can work with depression if it becomes severe. If the problem has occurred in previous EPD shots he may choose to administer some drugs at the time of the shot to ward off a depression episode in the day or two after the shot.
4.6 I'm under a lot of stress, will that affect EPD?
[Section Updated: 2/97]
If your stress level is a normal part of your life, it probably won't affect EPD. If you have an extra stressful time in the days before, through the week after, the shot, the effectiveness may be reduced but likely not completely killed. Since some of the doctors only offer shots once a month, the patient may be just as well off to get the shot, even under stress, than to add another month to the cycle. If the stress is certain to have subsided in a month, a delay is a consideration for gaining the most from the shot. Stretching the shots too long may have a counterproductive effect on the therapy response.
4.7 What happens if I go out of bounds on the restrictions?
[Section Updated: 2/97]
Stick to the diet! Stick to the routine prescribed by your EPD doctor! See also: "I've had more allergy related problems, instead of fewer, since my last shot - what has happened to me?" (Top EPD FAQ).
Some people can get away with it, some not. If you are one of the people who will keep a newly formed "fall-out" sensitivity until the next shot kicks in, it's not even worth crossing the bounds. Unfortunately no one can predict if you will have a fall-out or how long it will last. Stick to the rules, you will be better for it. Your EPD doctor has set your restrictions based on your case history and on past EPD reactions. Discuss this with him before stepping over the bounds.
On Aug 7, 1995, jstraks at switchboardmail.com (Jerry Straks) replied to a question by Tawna Wilsey:
>I just received my second EPD injection. Diet went fine for the 4 days before the injection. However, I accidentally ate something that I think may have had corn in it ('vegetable oil'). Have I totally blown it? Should I still do my best to stick to my strict diet for the next 2 days (or have a hey-day with trail mix...just kidding!). What will happen?
Stick to the diet. I have been told that it is not an "all or nothing" deal. You do not lose all the benefits from an accident like that. (Before they figured out that diet restrictions could enhance success, they still had pretty good success ratios.)
[Editor - Good historical insight Jerry.]
On Jun 21, 1996, Jerry Straks <jstraks at switchboardmail.com> was writing a long story, of which this is a part:
EPD, on the other hand, seems to be characterized by a time for enzyme-assisted build-up of suppressors (known affectionately as the "careful time" after each injection), during which the allergy-squelching "flywheel" is being accelerated, and the suppressing time (the time between injections), during which the "flywheel" slowly loses "energy" and effectiveness. I chose this metaphor intentionally, since my experience is that the amount of "flywheel acceleration" is dependent on what happens during the careful time: Infection? Cheat on diet? Vitamin or mineral deficiency? Quit being careful too soon? You get less acceleration. The flywheel will not be spinning as fast when you enter the suppression phase. You get less improvement. It does not last as long. (CAUTION: This is just my mental model for what I saw happening during my treatment. Don't take it as anything close to a scientific explanation for EPD. Your doctor can give you that.)
4.8 Why must I use special soap and avoid skin lotions during the critical times?
[Section Updated: 8/01]
It's been said a lot already. The patient may become sensitive to most of the brands and ingredients of common soaps and skin lotions.
An added problem is that most of these preparations contain oils. Oil, grease, and many body lotions will bind the contents of the EPD shot so it is not properly absorbed by the body. This is especially true on the body area or limb where the EPD was injected. So the perspective is: you've gone through the careful times, paid the money, and won't see any results from the EPD shot if the soap or lotion binds up the process of EPD absorption into the body.
The 1996 Pink Book says to definitely avoid any such preparations during the critical 3 days. Further avoidance for the following week is suggested so that all of the shot contents available can be taken up.
Simple Brand soap, shower gel, and shampoo were allowed, even during the critical 3 days. However, check the current rules of use in the Pink Book.
On March 2, 01, Sue in the UK <Sue at CADMORE.DEMON.CO.UK> indicated Simple Brand Shampoo is no longer useful for EPD:
The new 'improved' simple shampoo has had essential oils added and is now unsuitable for epd. I spotted this in the press and asked Dr. McEwen about it - he said it is now unsuitable for EPD - not that he had communicated this to anyone. Glad I asked, really (hopeless man).
Anyway, I did some research and tracked down a new line of shampoo being made by Neals Yard Remedies. This is a UK company who make aromatherapy and herbal- based products. The Baseline range is a new line they are doing which are just base products to which you can add your own oils etc and so are fairly simple.
The Baseline shampoo contains: lauryl betaine, vegetable glycerine, water, potassium sorbate, ammonium lauryl sulfate (yuk!) That's it.
I showed this to Dr.McEwen and he said this is OK for EPD.
This is readily available in the UK through Neal's Yard shops and by mail order. Ring 0161 831 7875 for a copy of the mail order catalogue and 020 7627 1949 for customer services - can give you the location of the shops. Email is <cservices at nealsyardremedies.com> also comprehensive web site at www.nealsyardremedies.com
Not sure about the US - there is a US site at www.nyr-usa.com that does mail order but does not list the 'make your own' section or the baseline range on the site. It might be worth ringing them to see if they can import it on 1 888 697 8721. They do a catalogue. Are based in Greenwich CT.
On August 9, 01, Jackie <jabaker56 at neo.rr.com> provided more info on the current shampoo useful for EPD:
I just received the EPD shampoo that my US doc sells from his office to replace the Simple Shampoo. It is an 8 oz. bottle and cost (from my Dr.at least) $5.00 + S/H. This what the label says:
Basic Care-daily cleansing shampoo
UNSCENTED gentle formula-Ph balanced
APPROVED FOR EPD USE BY W.A.SHRADER JR, MD, PRESIDENT OF THE AMERICAN
EPD SOCIETY.
Ingredients: Water, Ammonium Lauryl Sulfate,Ammonium Laureth Sulfate,
Coco Sulfobetaine, CitricAcid, Sodium Chloride.
Manufactured by G.O.F. Products USA
Coastline Products
P.O. Box 6397 Santa Ana, CA 92706
Fax: (714) 5546861
Customer Service: 1-800-554-4112
For Orders: 1-800-554-4111
4.9 How many weeks of careful time need I observe?
[Section Updated: 2/97]
This appears to be another one of those individual patient things again. Perhaps it's one of those laws of diminishing returns. Most doctors will specify a minimum of one week after the shot where your non-allergenic foods are to be the only foods to be ingested. For people with no food problems this is no big deal. For food sufferers it's just another thing to deal with. The 1996 Pink Book suggests additional benefit can be gained by avoiding allergenic foods through the second week after the shot. Some severe food sensitive cases have found it helpful to do three weeks non-allergenic and even do the whole period on the VMD.
Similarly this might be applied to inhalant and chemical problems. However, these are much harder to control for people with regular jobs or family routines. Certainly the critical three days around the shot are considered extra careful times and must be observed. Additional avoidance certainly won't hurt. The inability for avoidance of some of these things may be the reason why it takes EPD longer to sort them out and obtain positive results.
4.10 Can I donate blood while on EPD?
[Section Updated: 2/97]
Not from one week before until 3 weeks after the shot. It is a stress to your body - which is what you are trying to avoid.
Blood centers may not want some of our blood. ;-)
4.11 How will I know when the shot "kicks-in"?
[Section Updated: 6/99]
On June 10, 1999, "Stan Rohrer" <srohrer at scitexdpi.com> answered:
If you have subtle gains, about the only way is to challenge your allergies by exposure and see if the allergy effects are less than before. This is also the case where people have only a few allergies and can completely avoid them in there "normal" lifestyle. For example, hives as result of eating eggs or shellfish might only be detected as being better if you eat eggs or shellfish (challenge) and find no hives are produced. [Editor: A challenge test may not be a good idea for people who have anaphylactic reactions to their allergens.]
For many of us, the normal lifestyle includes on-going/continuing allergy response to some level and "kicking-in" is noticed immediately by a lessening of these on-going allergy responses. In other words, most of us dream for the post 21-23 day where all the sudden the nose quits running, the sinus opens, or whatever gets better that we otherwise have to tolerate, as an on-going allergic reaction to something such as pollens or dust mites.
4.12 It's been over 3 weeks and I've seen no response from my shot. Why?
[Section Updated: 2/97]
It takes about 3 to 4 weeks for the treated T-cells in your system to mature. Many people see positive response in the 4 to 5 week time frame. For some people, 4 to 7 shots must have been administered to see this response (the "Main Action" response per the 1996 Pink Book). People may see the response on earlier or later shots. This effect is sometimes referred to as the shot "kicking in". Try to be aware of how you are feeling 21-28 days after your EPD shot.
On Oct 10, 1996, MVDS43A at prodigy.com (MR RANDAL K SPARKS) reported:
My shots "kick in" about 12 days after the shot. Wakes me up very early in the morning with "little gremlins" running around my body turning off, or at least down, some of the many allergy symptoms. Has been non-subtle on 6 out of 8 shots. Doesn't happen to everyone, but if it happens to you, you won't have to ask, you will know.
[Editor - Randal, here's wishing the rest of us were as fortunate and as quick to respond.]
You may have taken disallowed drugs during the critical periods and those killed the effect of EPD.
You may have used skin lotions or other oil or grease based skin items and the EPD shot was not absorbed into the skin correctly.
You may have a chemical or nutritional imbalance in your body and the EPD shot was affected. The use of the specified supplements are aimed to correct these problems. Some supplements have critical dose levels. Wrong doses (especially high doses) may have affected the treatment.
Perhaps you were sick (viral, bacterial or fungal infection) and this affected the EPD results.
You may have messed up on any of the other rules.
You may have gut parasites or other unwanted gut guests which need to be treated.
In some shots, especially early ones, results may be too subtle to detect. See also: How soon will I get better?. (Top EPD FAQ).
4.13 Will Amalgam Mercury dental work affect EPD?
[Section Updated: 9/98]
Amalgam Mercury (silver) fillings are a matter of medical dispute over whether they affect the health of people who have them as fillings in teeth. Many of the EPD related doctors will have some concern with the interaction of mercury with the immune system and allergies. Heavy metal exposures from a work environment (i.g. welding shops or metal/chemical processing) are also a related concern.
On 6/3/97, Stan Rohrer <stan.rohrer at scitexdpi.com> responded to this question:
There was a discussion here a month ago on this topic. I didn't follow it too closely then but here is what I remember from the discussion and other sources.
The EPD doctors get concerned when the filling count approaches 8 and EPD is not seeming to work. If you cannot relate symptoms to the adding of fillings then don't do removal until EPD is failing. The removal of the old fillings actually may increase the level of mercury in your body do to the disturbance of the center of the filling and where the outer edges have already lost some of the mercury. People who are having fillings removed because of mercury problems also go through a detox program. Not all dentists can handle the detox routines. The removal and detox can get quite expensive.
On 6/3/97, Terri <teridaktyl at aol.com> added:
In our office, we do remove mercury fillings and do some IV therapy to help remove the excess mercury (or other toxic metals) in your bloodstream. THEN, we do EPD. Some doctors may wait until a patient has more mercury in their system, but we find that it is best to have them removed first. Of course there are blood tests to see if mercury is even a problem, if the patient is negative, we will proceed with EPD.
On 6/16/97, Anna <amollow at aol.com> commented on the treatment:
I'm talking about chelation therapy, a subject about which I know almost nothing. Apparently, it is used to remove heavy metals (lead, aluminum, mercury, etc.) from your system. You get a series of IV's containing a substance which draws these metals out of your system; they are then excreted in the urine.
My doctor says that the most reliable way to test for heavy metals is to actually do the procedure once and collect your urine for 24 hours. Dr. Shrader referred to this as "provocation" and said it can be risky if a proper detox protocol isn't followed. He said something about one of his patients getting worse for 2 to 3 months after a "provocation" that wasn't done right.
Another concern is that the treatment itself, including the diagnostic portion, draws minerals that you need from your system, in addition to the heavy metals. They then "replace" them in another IV, but this makes me a little nervous.
Also, I know that some people get chelation therapy to remove plaque from their arteries. My nutritionist has been trying to *raise* my cholesterol for a long time, and it occurred to me that chelation might suck the cholesterol I need out of my system. I realize that this probably makes no sense! Obviously, I need to learn a lot about the treatment before I consider doing it.
On 6/20/97, Marge <mastent at nidlink.com> added:
Internet notwithstanding, I like to read a good book when I'm in the data-gathering stage of a topic I'm interested in.
Two books on chelation occur to me -
"Bypassing Bypass" by Elmer Cranton, MD
"The healing Powers of Chelation Therapy" by John Parks Trowbridge, MD and
Morton Walker, DPM (Professional Medical Journalist)
I've no interest in either...etc.
DPMS and DMSA are chelation treatments which may be recommended by your doctor to clear the body of heavy metals.
On 24 Apr, 1998, Carol Ginsberg Brown <cgbrown at mediaone.net> provided the sign-up procedure to get on to an Amalgam Email discussion list:
Write to LISTSERV@LISTSERV.GMD.DE and, in the text of your message (not the subject line), write: SUBSCRIBE AMALGAM
On 14 Sept, 1998, Sandy Shepherd <cna00012 at mail.wvnet.edu> provided a resource for material compatibility:
Clifford Consulting & Research Inc. has a web page with information about the reactivity testing. This test uses a blood sample to determine which dental materials are best suited for you.
On 13 Sept, 1998, Blair Cooke <volosolo at adnc.com> suggested:
My husband is in the process of having his amalgam fillings replaced with compatible materials and I have completed the replacement process. We spoke with Dr. Huggins, who wrote one of the first books on the dangers of mercury, etc. - "It's all in your head." Dr. Huggins highly recommends compatibility testing; however, he recommends Peak Energy over Clifford Consulting. I believe that he feels the quality of their testing process is superior. Anyone considering replacing their amalgams may want to research both companies.
4.14 Is EPD available for children?
[Section Updated: 6/97]
Yes it is.
On 2/22/97, Marge Jones <mastent at enaila.nidlink.com> related:
In the office where I go I have come to know a darling little boy who started EPD at 10 months - the youngest child ever, at that time. He's now a normal almost-four-year-old, and I believe he gets about 3 shots a year. So the pesky protocol inconveniences his life only a few weeks per year. He will probably be off them altogether by the time he starts school. He was started so early not only because it was hard to find anything he could tolerate to eat, but also his eczema was so bad, so weepy, he was a mess. His pediatrician had him on atarax - a drug with both antihistamine and tranquilizing effects. The family was so upset at keeping him drugged but unable to get through one night without the medicine. He was quite a complex problem, and has responded beautifully.
On 2/25/97, Martial Dufour <martial.dufour at crc.doc.ca> offered:
Your e-mail remind me of myself one year ago when I was looking for the same information than you are looking for today. At the time my 4 year old daughter was diagnosed with atopic eczema (severe eczema over 95% of her body, related to food allergies). Her condition was intolerable making her life and ours havoc. In despair I decided to try EPD and I am now ready for her fifth shot. The improvement right now is incredible. For the most part the eczema has receded to a small patch on one leg. Before this occurred (after the fourth shot) her improvement had not been as significant. Over each 2 month period she had brief period (2 week) of improvement in particular after the second and third shot. After the fourth shot however her improvement was almost miraculous. She is now at the stage where she has stopped using all her medication except for a bit of hydrocortisone on the bad patches. She has been like this for the last 2 months. Today I am very happy with the progress and I hope that this will continue.
On June 30, 1997, Nancy Miller <millern at redwood.cc.andrews.edu> responded to a query about EPD for kids:
Your son sounds a lot like mine was. He is now 12 years old and is doing so much better than before he started EPD. He had really bad eczema, caused from allergies to foods and metals. He also had asthma and recurring chest infections, inhalant allergies). He was sick a lot and taking medications every day.
He started EPD about a year and a half ago. He doesn't like the EPD diet (that's normal) and complains loudly but he does follow it. I try to make it tolerable for him. He eats mostly potatoes and carrots, since he hates lamb and won't even consider cabbage or the other EPD foods. I make him potato pancakes, mashed potatoes, baked potatoes, roasted potatoes and carrots and potato chips made in the microwave. The last two shots we were finally able to get the Granose margarine from our doctor. It made a very large difference!
The good news is after (about) shot #6 or 7 his eczema disappeared and has not returned. But he started improving right away. He no longer takes any medications and doesn't get any more colds than most kids his age. He has responded much quicker to EPD than I have. I started 2 shots before he did. I'm doing much better too, but it has taken me longer to see improvement.
If I had it to do over again, would I? YES! It's the only thing that has helped both of us. We tried regular allergy shots. Very little help there.
On Jul3 3, 1998, Terry Remedio <remedio at bee.net> said:
My four year old has received 4 EPD treatments thus far for severe eczema with GREAT results. Despite living with a severely restricted diet and lifestyle and having extremities so disfigured from sores and discoloration that it was difficult to tell his race at one time, we are now adding foods back into his diet, our lifestyle is relatively normal (except during EPD) and my son's skin is primarily clear with some exceptions.
4.15 Got any tips and tricks for children?
[Section Updated: 10/99]
On July 3, 1998, Terry Remedio <remedio at bee.net> suggested:
For all moms with kids on EPD - some thoughts:
a.. Breakfast can include Sweet Potato baby food (I use the organic kind, but if the ingredients are only sweet potato and water as many are, my doctor said it was okay.)
b.. Popsicles can be made with fructose and water, then frozen.
c.. Because we usually only allow TV for 1-2 hours a day, during EPD I allow unending TV. (It keeps him still and not overheated.) We choose a few videos at the video store and become spend lots of time cuddling.
d.. He loves to help me cook, esp. EPD soups and sweet potato "hash browns" with sea salt.
e.. Because most arts and crafts are "out" on EPD, we mix potato starch flour and water then cook it like a pancake. It makes a slimy gooey circle that he loves to play with (only over the sink!)
On Oct 17, 1999, Terrie S. <skygate98 at hotmail.com> had these ideas for a 4 year old child:
Stephanie was even excited to hear that she gets her shot in three more days because then she gets to eat the jerky! She was doing a happy dance and everything! Hopefully, she won't be too sick to enjoy it.
She is also looking forward to eating the flamburgers (taken from the book The Hungry Thing Returns) and carrot rocks (dehydrated carrots). One of our strategies is to try and make this as fun as possible under the circumstances. Today is family field trip day as a special treat before getting down to the critical days.
4.16 Will EPD fix my CFS?
[Section Updated: 2/97]
CFS (Chronic Fatigue Syndrome) is a tough nut to crack. A number of EPD Mailing List members report that EPD has not (as yet anyway) been fully effective against CFS. However, EPD has made enough difference in food, inhalant, and chemical side issues to be worthwhile. Even though EPD does not appear to be a CFS cure, it has reportedly been very beneficial at regaining strength and regaining a more normal lifestyle. In time, CFS may continue to fade as patients get into the second or third year of EPD.
On May 28, 1996, Jillian Harrison <jilhar at vcn.bc.ca> responded:
I have been on the EPD treatment for 2 1/2 years and I find that not only does it help my allergies but it also helps CFS in the sense that it increases my energy. I stopped for four months and went right downhill again. It does not cure me but it gets me out of bed and a bit more active, like being able to go out for a couple of hours as long as I don't walk too much. I am quite severely affected by CFS so it is a godsend for me.
4.17 What preparations should I make before the EPD shot?
[Section Updated: 3/00]
Attend your doctor's EPD Patient Training class before your first shot (if it is provided).
Begin supplements and gut preparations.
Clean house the week before (to reduce dust and dust mites).
Wash bedding and bed clothes (hot water to reduce dust mites and allow time for laundry soaps to out-gas).
Arrange transportation and hotel if needed.
Arrange vacation day(s) at work if needed.
Taper down caffeine to none.
Buy / prepare special foods for EPD diet.
Change water filter or buy filtered water.
Buy Simple brand soap and shampoo.
Buy mineral deodorant.
Arrange for avoiding pets.
Arrange for avoiding tobacco smoke.
Warn visitors to come "clean" (no perfume, etc.).
Review other restrictions to your otherwise "normal" lifestyle.
Make a large photocopy of the EPD chart from the Pink Book for reference or diary notes as the days progress. It's useful to add week day and dates notations.
Arrange your entertainment / activities / homework / projects (videos, movies, audio learning tapes, needlework, letter writing paper, or such allowed tasks).
Relocate "gotcha" items that you might inadvertently pick up and use out of habit when they should be restricted. May include: toothpaste, contact lens solution, denture adhesive, dentures or dental appliances, shaving cream, hand soap, bath soap, shampoo, deodorant, hair spray, hand cream, body lotion, medications, common table salt (sea salt is OK), dishwashing soap, air freshener, and your other favorites.
Nicolette Dumke's book, The EPD Patient's Cooking And Lifestyle Guide, has over 5 pages of similar and additional suggestions, tips, and resources for getting organized for an EPD shot.
On March 1,2000, "Barb" <barbmms at iland.net> offered this binder organization approach:
Before my son's first shot I but together a binder. I have a page for each day, from the 11th before (that's when he starts gastromycin) and it goes until the 22nd day after. Each day tells me which supplements he needs to stop, start, etc., it reminds me of the water, the EPD diet, when I can gradually increase allergenic food, when I have to fill my car with gas, when I need to remove paper products, when I can vacuum again, etc. Each day I flip the page, this has been very helpful to me because it seems one day just goes into the next. So many things skip around in the book, and the middle section is nice but I felt I wanted something more than that. When I put this together, I went page by page in the book and wrote everything down by the day. Now between shots I just erase the date and change it accordingly and everything else is already done. The day's are still there in pen along with everything else. I would recommend this to anybody.
On Feb 4, 1998, Vivian <krust at fuse.net> offered this hotel info:
If you're going to a hotel, you might try locating one with "Evergreen Room" accommodations. These type of accommodations are equipped with air purifiers, shower filters, and drinking water filters. They are supposed to be "guaranteed odor free", but some use fragrances laundry products on the bedding and linens, and others have been known to use carpet fresheners. It's best to call the location you're interested in and check with the housekeeping staff to be sure. [Editor - Ask to be sure they are not just advertising the use of some Pine scented spray!] I am not trying to advertise a product, just trying to bring a valuable service to your attention.
EverGreen Rooms* by Hartford, Inc.
432 Landmark Drive
Suite 2
Wilmington, NC 28412
Phone: (910)799-7955
Toll Free: (800)929-2626
Fax: (910)799-1925
Email: jfelds at evergreenrooms.com
URL: http://www.evergreenrooms.com (dead? 03/21/2011)
On Jan 10, 2000, Robin N Johnson <ashburn6 at juno.com> offered this hotel info:
We stay in Marriot Courtyards.....they have a small fridge and microwave so I can bring along the special food for my son. (not that he ever wants to eat it!!) The one in Valley Forge PA uses no chemicals that I can tell.....and I am
very sensitive to odors. We have had chemical troubles with Radissons and Holiday Inns.
On Jan 11, 2000, Peter J.W. Melsa <Peter.Melsa at tellabs.com> offered his travel survival guide:
Thought I would chime in with our own hotel experiences. My wife suffers from MCS and EI and so staying in hotel is tricky. Here are my recommendations, in no particular order or "coherentness". This is our hotel survival guide. If this seems too difficult, then you must not be that sick ... or you aren't willing to work very hard to feel better. When my wife reacts she feels really bad, so these things are insignificant.
0) Don't assume that any particular chain is any better than the next. The local management makes a huge difference.
1) When making a reservation speak directly with the hotel. Don't rely on a 1-800 reservation clerk.
2) Explain to the hotel your medical needs and situation
3) Request a room which has not been renovated recently, or near one
4) Request that they don't use chemical cleaners, they sometimes will use vinegar and water if requested
5) Demand and explain that it is a medical necessity the room be non-smoking
6) Ask that you get a room that has not been occupied for a couple of days if possible
7) Ask that the room be [Editor: ozonated replaced with] ionized before you arrive and have them do this daily while you are gone
8) Don't have them clean the room while you are there, you don't clean at home every day do you?
9) Ask that, other than the ozonater, that nobody enter the rooms
10) Bring your own sheets and blankets and pillows - often they only have those "styrofoamy" blankets and polyester bed-spreads
11) If you can't do 10 (although I can't understand why if you are truly sick) - then ask for extra cotton blankets and sheets and put a few blankets on the mattress followed by a few layers of sheets. This gets you away from the chemicals in the mattress and the scents of anyone who has slept in the bed recently. Use multiple pillow cases for same reason.
12) Bring your own towels
13) Bring your own soap - the stuff they provide is almost always not safe
14) Stay in a room with a dishwasher and refrig. That way you can cook healthy meals of safe foods. Beware of the dish soaps and dishwasher detergent they provide. Bring your own.
15) Pay attention to where the hotel is located. Is it near a major freeway.
16) If you are chlorine sensitive then consider bringing a portable water filter or drink bottled water. My wife is sensitive enough that we take sponge baths using bottled water in most hotels.
17) If you think you have a problem with a room, ask them to show you other rooms and see if they are better. If not, and you are having problems, consider changing hotels.
18) Before entering elevators and hallways, have someone who is not sick check for scents. If necessary wear a mask outside of the room.
19) Take an air purifier with you. We have a unit that plugs into the cigarette lighter in the car, and then we have an adapter to plug into a regular wall outlet in the hotel.
20) Get some extra cotton blankets and sheets and cover the couch & easy chair before you sit on it.
Okay you get the picture . How many changes have you made at home? Think about them, and then think about how to make the hotel environment be just as safe.
On Jan 11, 2000, Deb and Jim <cactus at interpath.com> added this hotel survival info:
Another helpful thing a very understanding desk clerk suggested (some do look at you like you are speaking another language) is to request a handicap room if available - they are not used as often so they don't get the daily cleaning like the other rooms. We have found that they are less fragrant since not as used. I don't feel guilty about using the handicap room because in a way I do consider myself to be handicap - just not in the way most people think about it. All I am trying to do is survive the night in a not real perfect surrounding when traveling.
I also started to take extra bags to wrap my clothes in - both what I want to re-wear in the car and my night cloths, sheets etc. I always would wrap the bedding and what not so I wouldn't smell it in the car - but I would forget about what I was wearing - and just from sitting out through the night they would pick up the scents - which while in the room you get "masked" but once in the car boy would it smell! So now I only take in what is absolutely necessary to survive the night and wrap things up tightly and place them under a thick blanket in the car - we have a sport utility - so no trunk to throw things in to. And my clothes to wear in the car are hermetically sealed the night before!
4.18 Do I really need to avoid my cat, dog, and pets during the critical 3 days?
[Section Updated: 2/97]
Only if you don't want to become allergic to them. Animal fur and dander is very light and stays airborne for many hours. Locking them in another room or in the basement is not good enough as the heating system in your home will circulate enough to cause a problem. Either the patient needs to get out of the house or the animals do. If the pets leave, thoroughly clean before the critical period.
4.19 Do I really need to avoid tobacco smoke during the critical 3 days?
[Section Updated: 11/99]
Like animal fur and dander, smoke particles stay in the air for many hours. Someone smoking in another room or in the basement is not good enough as the heating system in your home will circulate enough to cause a problem. Either the patient needs to get out of the house or the cigarettes do.
The patient must quit smoking before starting the EPD series of treatments.
On 22 Nov, 1999, Stan Rohrer <srohrer at scitexdpi.com> replied concerning a smoker being in the house:
Smoke is a very fine particle that stays suspended for many hours in the air. Have you been given instructions for pets/dogs/cats? They are to be out of the building for the critical days so the fine dander is not circulated by the heating system and/or normal air movement from people and temperature fluctuations (thermal movement). Smoke is the same except that the particles are lighter and stay airborne longer before settling out. Have you ever looked at dust in a shaft of sunlight streaming through a window? You can control smoke less than controlling the dust you saw in the light. Smoke and dust basically go everywhere without control.
The smoke smell from peoples clothing bothers my wife and I. As I understand, this too is actually smoke particles sloughing off the clothing and into the air. Hence, smoking, even away from the house, or even visiting a smoky environment, will bring smoke particles on clothing back to the house. I changed barbers because my wife is very sensitive to the smoke I brought back only after 20 minutes in the shop.
As others have said, the risk is your EPD patient will become sensitized to the smoke. The next shot will likely fix the problem if the protocol is then followed. But the next shot is 2 months away. If the patient becomes sensitive, then the trade-off was really a couple of days without smoke or a couple of months without smoke.
Please don't be too hard on the smoker. I've seen smokers attempt to quit (lived with one in college) and it is not an easy task for many - just as EPD protocol is not exactly an easy task. When the college smoker moved out I only then realized I was addicted to the second hand smoke as I thought smoky places then smelled "good" to me. However, the smoker does need to understand the possible ramifications and try his best to do what is right for the EPD patient. I suggest smoking at home is out. Smoking away from home might be a risk you may have to live with in hopes the returned particles are of low enough level that the patient doesn't get sensitized and the smoker reduces his withdrawal problems. Now is the time for the smoker to begin looking for a method of quitting since this will affect his style anyway.
4.20 Why no sexual activity during the critical 3 days?
[Section Updated: 9/97]
The EPD patient may become sensitized to body fluids from their partner. Women, in particular, may become sensitize/reactive to their spouse's semen. This may jeopardize the relationship over the next months. Better three days abstinence than three months.
Body fluids from the EPD patient can carry the EPD serum and hence "treat" the unsuspecting recipient with an uncontrolled dose. The recipient has not followed EPD rules and may get a severe reaction to EPD.
For the EPD patient, the stress of some sexual activities may reduce the effect of the EPD treatment.
4.21 So I've been on EPD for umpteen shots. Need I observe the critical three days?
[Section Updated: 2/97]
On Sept 10, 1996, MARTHA RALL <mrall at kumc.edu> answered a similar question:
Yes, this "old-timer" still STRICTLY follows the 3-day critical menu. You gotta remember, I spent an entire 18 months on just rice, turkey, bananas & zucchini. Period. 3 days is a breeze. I'm not going to take a chance of going back to the old days where I reacted to everything I ate and breathed. If you break the diet or hermitage [lifestyle restrictions] during the 3 days, you take a chance of sensitizing to anything you come in contact with, first shot or 1,000th shot.
[Editor - Thanks for your insight Martha.]
4.22 What can I do to convince my insurance to cover EPD?
[Section Updated: 9/98]
In 1997 you may or may not be successful in getting health insurance coverage for EPD shots.
Consider that the insurance company already has your money (premiums paid), they make the rules on what is covered, they likely have no clue about what EPD is, and you want some of your money back. A suggested approach likely should include kind communications and education (loud voices and mean letters can always be used as a follow-up, but rarely does the soft sell approach work after they are put on the defensive).
Some people suggest that the first insurance claims be made as normal, without any supporting information, by your doctor or yourself, and see if the shot is covered. Office visits likely should be. If the shot is covered then you are well on your way with minimal hassle. The supplements likely won't be covered and you may wish to work on these as a whole separate issue after working on the shot.
One suggestion for submission has been to use the normal CPT (insurance) codes for standard allergy shots. The submission may go through easier with those codes but the downside is that the insurance may limit the payment to their UCR (Usual, Customary, and Reasonable) charge ceiling and only pay a portion of the more normal $15-$25 allowed for traditional shots. Hence the coverage will be small. If they pay to the UCR you will then have to argue those points. At least one doctor submits under the CPT Code 95199 (miscellaneous immunotherapy). This may be more correct but also will more likely get your submission sent to the insurance company internal review board to determine if the claim is to be covered. In a reported case, an insurance clerk reportedly didn't know what the 95199 code meant and the claim sat around for months without any response. Hence it was time for a status inquiry phone call.
If you get rejected for the shot, or after a reasonable period haven't heard any response, give the insurance company a call and determine the status of your claim. Any discussions and new information must be followed up with a written letter so that you have a documentation trail to fall back on if needed later. Make notes on all conversations, including the person you talked to, the next steps to be followed, and the address to send correspondence (may be different than submitting a new claim). Keep copies of all letters. Likely your insurance company has made a decision based on not knowing anything about EPD. At this point it becomes your task to educate them. The objective is to get the clerk to approve your submission. However this is unlikely since it has been previously rejected. So your real mission is to get past the clerk and to a review board. The review board is likely a busy meeting and you need to provide all the details in a brief format that they can deal with.
If your doctor is willing to write a letter of explanation, or make the appeal to the insurance company, he will likely carry the best clout and have some knowledge on what they need for the review by the review board. Get him to make the appeal (you might show him this to provide some hints). If the doctor won't make the appeal, see if he has a form letter you can use for making your own appeal.
A suggested appeal letter might include a number of items, including of course, all the policy and customer information concerning your service dates to be reviewed just as if this were a new claim submission. A copy of the previous submission claim form would be a handy reference. Note in the letter which line items which are to be reviewed (the shot by date and dollars). Note the phone conversation or rejection notice where you determined the status of the items to be reviewed.
Your letter might also include a cost comparison between traditional weekly allergy shots and the 8 week (or whatever) cycle you are expecting for the EPD shots. Suggest that the cost differential is not all that great over the comparable period and, if true, that the insurance plan covers the traditional shots already. You might also suggest in a sentence that traditional shots didn't work for you and that another means of therapy had to be explored. If applicable, you might explain that the submission was done under CPT Code 95199 (or whatever was chosen) instead of the code for traditional allergy shots since EPD is not the traditional shot. This opens the door for more educational material.
The letter might include attachments on EPD concerning a description and results. Some of the Web pages quoting from study results and medical publication references, may be useful to authenticate the EPD effectiveness and research. However, note that traditional allergy shots have never been approved by the FDA, and that the insurance covers these shots, so it would seem unnecessary to wait until the end of the study to make a favorable insurance coverage consideration.
Reportedly the EPD manual that the EPD doctors receive during their meetings and training identify the recent statistical results of EPD treatment on various symptoms. Your EPD doctor may be willing to provide this information for review by the insurance companies if it is thought to be helpful to the insurance review board and is related to your problems.
Again consider the tone of your letters initially is to be gentle and informative and to lead towards an education where a favorable response can be obtained. Failing that, consider what hardball pitches might be useful.
Another idea might be to have your doctor charge a larger office visit fee (or for an "extended" office visit fee) and a lower fee for the shot. This might help some with the insurance. However, the insurance might also balk if the office fee is above the UCR (Usual, Customary, and Reasonable) on their fee list.
If you are successful with getting the EPD shot covered, now try the routine again for the supplements since these are a required part of the EPD therapy. EPD prescriptions should be covered with little problem, as would any other non-EPD drug prescription submitted as a claim. The supplements are a whole other ball game and the insurance company opens themselves to all kinds of other "fringe" treatment arguments (e.g. acupuncture, homeopathy) so they may choose not to cover if they open this door. This will be a tough one to work out to a favorable answer for the patient.
Consider getting your doctor to write prescriptions for as many of the supplements as possible. Prescriptions pass through the insurance companies better than non-prescriptions. Rocaltrol and Diflucan are among the noted drugs which may be available from some doctors as well as from drug stores via a prescription. Ask the doctor for prescriptions on other supplements where possible. Also consider the quantity for which he writes the script. If you pay a one-time co-pay, it might be to your advantage to get a larger quantity for only one co-pay fee.
Some places of employment have pre-income tax medical deferment funds available to the employees (sometimes named "flexible spending plan"). These medical accounts allow pre-tax dollars to be diverted into the employees personal medical fund. Paying medical bills from this fund results in saving the tax costs on your income for the covered medical expenses. If your employer has such a plan, find out about the rules and try to make use of it. The fund may or may not cover experimental treatments just like the insurance companies. It may or may not cover the supplements. However, they may be a bit more lax in the rules, since these would be essentially be IRS medical rules instead of insurance company positions, so it is definitely worth a review. Typically a claim against this fund can be made with the rejection notice or Explanation Of Benefits notice from your insurance company and thus these have a better chance of being covered than making direct submissions and having to again go through the review board for the fund (just like the insurance company steps above). Keep sending the shots and supplement bills to the insurance company, and then forward the results to the medical fund for reimbursement on a pre-tax basis if possible. Again, read the rules of the fund, as some funds require a yearly estimate and any unused remainder at year end is lost (thus negating some of the tax benefit).
[Editor - I tried insurance routine noted above and was still rejected by the review board due to the "experimental" status of the treatments.]
It has been reported that Medicare pays a portion of the expenses. Other reports suggest that Medicare/Medicaid don't cover experimental treatments and EPD is classified as experimental in these programs. Also reported is the possibility that EPD doctors will not make insurance submissions for these government claims. Eligible people must research this avenue thoroughly with the doctors office insurance people and the insurance providers before starting into an EPD program.
On or about 6 Feb 1998, somebody said:
My insurance did not originally cover EPD shots either, but I resubmitted the claims with copies of the scientific studies published in peer-reviewed journals (like the Lancet) and my insurance changed the ICD-9 coding to something called "Allergy Care - ICD #95180". Also, see if your state has an insurance commissioner's office with an advocate for "us little people". The State Of Washington has such an office, and they provide forms to file with the State Insurance Commissioner and Insurance Companies. When you file a request, the insurance commissioner forces the insurance company to explain their rejection of your claim in writing. Best Regards...EPD works for us so far.
On or about 14 April 1998, Sheppard <cna00012 at mail.wvnet.edu> provided this insurance education:
First of all, for those of you who have given up on trying to get your insurance company to pay for EPD treatments, you may have given up too soon. I realize that this can become a very frustrating process, but insurance companies seem to make the process difficult so that folks **will** give up! In searching the archives, I found that Blue Cross-Blue Shield in the following states ***has*** covered the shots---California, Colorado, Iowa, Missouri, New Jersey, Oregon, Pennsylvania, & Texas. In addition to BC/BS, two others have paid---Guardian PHCS, and Mass Mutual Insurance. I'm sure that there are other states & insurance companies who are not included on this list. Please let me know if you know of some & I'll add them. Thanks!
I have also discovered that your Personnel Director/Human Resources Office at work (or whoever is in charge of insurance & employee benefits) should be able to tell you the steps to follow in getting claims covered. I was told (by the Personnel Director), not only the procedure, but also the names of each person to contact up the chain of command, from the lowly clerk who blindly disallows most claims (for anything), all the way up to the Chair of the Insurance Committee in the State Legislature. In addition, she said that one of the responsibilities of personnel offices is to help employees & their dependents get their claims covered. She has been Personnel Director at 3 different, large businesses, and she is an attorney.
If a person has gone thru the chain of command at their insurance company (from lowly clerk, to their supervisor, to the next supervisor, to the next-higher supervisor, etc., and to the head of the insurance company) without success, then the next step is to contact the State Insurance Commissioner (exact titles vary in various states but your Personnel Director can find out the name & address of this person). If the Insurance Commissioner denies the claim, then the patient should contact their state representative in their state legislature for help. If the elected State Representative is of no help, then campaign against him/her to get them out of office & get someone elected who will help you! (As you can see, I do not give up easily!) <grin>
On May 5, 1998, Cinnamon <lpskvin at arn.net> offered this discussion on Insurance Codes and Units:
A couple of weeks ago, I posted a message about how my friend in another state gets 70% of her EPD shot reimbursed by her insurance company--my insurance company pays less than half. (We have the same insurance company.) My friend called her doctor's office and learned that the code used for EPD is #95165, the same code my doctor's office uses. The difference is in the "units" portion of the insurance claim form. Her doctor's office lists 50 units instead of the 8 units my doctor lists. (We get the same shot mixes.) Her doc's office learned when one of their patient's reimbursement was only $4, that the insurance companies pay by the unit--the number of allergens you receive--not per shot. The insurance company then multiplies the number of units by how much they allow for each allergen.
The office receptionist said she knew of several offices around the country that were putting 50 units on their claim forms and having no trouble at all in getting the maximum reimbursement for their patients. She said she knew that other offices only listed 8 units and didn't understand why they did that.
Some insurance companies have a reduced cost plan available through selected pharmacies for maintenance or regularly ordered prescriptions. Since it is possible to plan ahead for EPD prescriptions, consider one of these subscription services for reduced prices.
On July 23, 1998, Ruth Campagna <racamp at gte.net> described her findings with prescription subscription plans:
My EPD Doc wrote me a prescription for 30 Rocatrol pills, and had the instructions "Take as directed." Because it was 30, it was regarded as a one month supply by my prescription service, and I only paid the deductible, which made it pills cost about 50 cents each. Since we only take a few each month, this one Rx will last for several months. We figured out that if he wrote it for 32 pills, which would be 4 months' worth, those two extra pills would make it appear to be a 2 month prescription, and the insurance company would charge me another $15 for the last two pills!
On Sept 11, 1998, it was reported on Dr. Shraders Web site that Dr. Shraders office now has an "insurance letter" that can be sent along to the insurance company explaining the "99" unlisted procedure insurance code. The letter reportedly explains the cost and treatment benefits for the insurance company review. The letter is available by Email from Dr. Shraders office. Your EPD doctor can request it.
On Sept 11, 1998, it was suggested on Dr. Shraders Web site discussion forum:
No insurance company has a "legal" right not to pay for a treatment just because it is not yet FDA-approved. That's been settled in court. If your company refuses to pay for a properly submitted claim several times, we advise you take them to small claims court. The cost should be about $30 to you, but about $2500 to them if they show up -- so it would be unlikely they would.
See also the above question: What is the cost of EPD? (Top EPD FAQ).
4.23 Which insurance companies offer the best EPD coverage?
[Section Updated: 2/97]
It likely won't do us much good to list insurance companies which do cover EPD since many of us have little choice. Additionally, even within the same companies (e.g. Blue Cross / Blue Shield) there are so many different plans that it is nearly impossible to compare. The best bets are to poll your insurance company choices before the sign-up period to see which has the best potential. Next, ask others in your same plan about the results of "fringe" claim requests. Then, work with your doctor and insurance company as outlined above.
Some companies have been noted to even waffle from claim to claim submitted by the same doctor and patient. Nothing is a "given" at this point for EPD.
Medicare actually has been reported as being the most consistent at making coverage payments.
4.24 Are Dr. Shrader, Dr. McEwen, or any of the EPD doctors available on the Internet?
[Top Section Updated: 09/2006]
Dr. Shrader and LDA web site.
Epidyme (dead? 03/21/2011) is the EPD research and manufacturing site in the UK. Includes EPD References (dead? 03/21/2011).
[Following Updated: 8/00]
It appears they are keeping a low profile if they are. Likely any activity could jeopardize the FDA/IRB study by being construed as advertising or "tainting" the study. It's a shame, but that's the way it works. We don't know of any of the doctors being on the EPD mailing list. A most notable information site is that of the American EPD Society, where Dr. Shrader has established information directly from the EPD Studies. Unfortunately the web site appears to not work most of the time - likely a constraint on advertising.
Even if they are on the Internet, they likely wouldn't answer specific patient questions as this would interfere with the accepted protocol between the patient and their EPD doctor. The other doctors don't like being "caught in the middle" should disagreements arise. If a third party doctor does get involved, they will most likely be sure the patients EPD doctor is copied on discussions. Finally, expect a bill from the third party doctor for his services. He has chosen his medical practice to earn a living and deserves to do so.
On 2/8/97, Susie Hanna <dshanna1 at juno.com> responded to a question on accessing Dr. Shrader:
To reach Dr. Shrader, 505-983-8890, Santa Fe, NM. Note two things...he works only Monday, Tuesday, and Wednesday 9 to 4:30 pm and he charges $220 per hour. He is the U.S. authority on EPD, so he's the one to ask, and yes he will do phone consults.
W. A. Shrader, Jr, MD
141 Paseo de Peralta, Ste. A
Santa Fe, NM 87501
505-983-8890 (voice)
505-820-7315 (fax)
On 6/4/97, Janine Walker <JLW at serviceteam.co.uk> responded to a question on accessing D. McEwen:
I was being treated by Dr. McEwen here in the Uk. His address is as follows:
Dr. L.M. McEwen
Weir View Wargrave Road
Henley-On-Thames
Oxon RG9 1HX
UNITED KINGDOM.
Telephone: UK 01491 576314.
I think you drop the 0 from the area code when you add international and country code.
4.25 Is NAET (Nambudripad Allergy Elimination Treatment) compatible with EPD?
[Section Updated: 1/02]
NAET is an acupuncture or acupressure technique for the treatment of allergy. Kinesiology is a muscle strength testing technique often used to determine the presence of allergy for NAET treatment. Both are controversial techniques when compared to traditional medicine practices in the United States. NAET was discovered and is promoted by Dr. Devi S. Nambudripad in her book Say Goodbye to Illness.
Patients on EPD need to be sure their EPD doctor knows that NAET is going to be done so that the EPD database and research efforts can track the effects. There is also a period of time around the EPD shot where NAET treatment is not recommended.
As of the Fall of 1997, no one on the EPD mailing list is aware of any scientific, or blind, or double-blind studies as to the effectiveness of NAET. EPD, on the other hand, has substantial documentation in scientific studies, in addition to anecdotal evidence.
On Oct 19, 1997, Judy <Bob_Reed at sil.org> reported:
Our family has been doing NAET since mid-July. The number of treatments we have had varies from person to person in our family from about 20 to more than 40. The end of treatment is not yet in sight, and that I think is the most discouraging part for us because we were initially under the mistaken impression that 15 or so treatments might do the trick.
As for reactions, we sometimes get headaches, fatigue, etc. for 12-24 hours after a treatment--the stronger the allergy, the stronger the reaction usually. Sometimes we don't have any reaction at all. The doctor advises us to drink lots of water to help flush the body of toxins after a treatment.
We have seen that NAET really does remove the allergies. At the same time, it also seems to allow allergies that were hidden to rise to the surface. That is the main reason our treatments go on and on...
Don't get me wrong--I still think NAET is the most wonderful health thing that has happened to us, especially for our daughter who was the most ill not only with bunches of food allergies, but also with MCS. I was very discouraged about her health before we found NAET. She has improved greatly, but is still not WELL. Of course we still have to replace her amalgam fillings because they are leaking into her body and causing problems, too, so doing that might make a big difference.
On Oct 15, 1997, S Smith MD <StephenPMC at aol.com> compared NAET with EPD:
I use both EPD and NAET in my practice and have good experiences with both methods. NAET is like a rifle and EPD as a shotgun. NAET treatments are limited to one allergen at a time, but the first 15 items on NAET are so important that one can frequently see marked improvement very quickly after they are corrected.
Cost wise EPD may be less expensive since you get so much done with 10 shots compared to about 40 to 50 NAET treatments. My initial take is that both work very well and they can be mixed but not for 30 days after an EPD shot.
I have had about 6 EPD shots and I am very happy with the results, but I still have some problem areas and I use NAET to treat those problems individually and it works fairly well.
The big advantage of NAET is in the emotional area, which is where many health problems really are centered, but they are manifest on a physical level. I found many of my own health problems came from an emotional level, but the symptoms were physical.
On Oct 20, 1997, Sarah Bretz <sebhis at dante.lbl.gov> commented on short term efforts:
I have had pretty amazing success from NAET for food allergies (so far- but it's only been a few weeks). I still consider NAET to be an experiment for me, however, because I have not seen any data on how it works. I do not have chemical sensitivities, so I cannot comment on that. I do have adverse reactions for a day or so after an NAET treatment, but they aren't bad. My NAET acupuncturist tells me that people can have severe reactions, which can be reversed by another treatment, and that I should call him if anything bad happens.
On January 17, 2002, Jennifer Beason <jpbeason9 at yahoo.com> commented on mixing NAET with EPD:
I took my daughter to have some NAET after her shot wore off. Muscle testing confirmed results of the skin testing and blood work that showed all kinds of allergies. We did some NAET on petroleum I think. Then 3 weeks after the EPD shot we went back. I wasn't really thinking about the timing. But muscle testing showed no allergies. The doc said that he knew that NAET and his work hadn't done that much. Then it dawned on me the EPD had kicked in. We had to wait until the EPD wore off before the muscle testing could show us what we had to work on.
So my thoughts are that when EPD works it does interfere with muscle testing since for a period of time a person is free of allergies.
The EPD definitely worked and NAET confirmed it. Since the EPD has been so powerful for my daughter I don't even try the NAET for her anymore. I have NAET treatments for me since I am not doing EPD.
See also: "What other Internet resources are available regarding allergies?". (Top EPD FAQ).
||||| Top EPD FAQ ||||| Allergies Home Page |||||
5.1 What foods am I allowed to eat during the critical 3 days?
[Section Updated: 2/97]
The 1996 Pink Book says:
- Lamb, Rabbit, Venison (if you rarely eat it), Fresh fish (but ask your
doctor about fish)
- Sweet potatoes/yams
- Parsnips, Rutabagas
- COOKED Carrots/celery/cabbage (outer cabbage leaves only)
- White potatoes (may be a problem for some patients)
- Lettuce (raw or cooked, outer leaves only)
- Tapioca (plain), Cassava, Sago
- Rhubarb
- PURE Baking Soda (Arm & Hammer is reported as pure, others may have
corn starch)
- Sea Salt (not "regular" salt, not iodized salt)
- Bottled, filtered, or purified water
- Granose or Tomor brand margarine (becoming available in the USA)
If you are already sensitive to any of these, they will have to also be eliminated. If you have nothing left then you must have a serious talk to your doctor about alternatives.
Some doctors allow additional items which are "exotic" to your diet. Check with the doctor before using them in the event they have had problems or are likely to cross react and make you sensitive to other foods in your long term diet. Some exotics may include: snake, buffalo, ostrich.
5.2 What about some recipes for the critical 3 days?
[Section Updated: 05/01]
With the limited foods that are available for the critical 3 days around the EPD shot, some creativity is useful. Here are some ideas to make eating a more pleasant experience during the time of the shot. For picky kids, these may help to keep them from a "hunger strike".
One trick noted for kids on the Mailing List is to make "french fries" by slicing potatoes lengthwise with a potato grinder machine (you could do it with a knife or food processor) and frying them in lamb grease. Another favorite has been to make hash browns by shredding the potatoes in a hand-held grater and cooking them with either ground lamb or lamb fat.
On Sept 10, 1996, Darcie Girmus <gg44708 at navix.net> suggested for kids:
Try mashed potatoes. Bake the potatoes in microwave, scoop out of skins. Put on electric mixer. Add lots of sea salt and water until you get nice, creamy mashed potatoes. They actually tasted really good--but would have been better with butter, of course. [Editor - look for the Granose or Tomor margarine.]
On Sep 13, 1996, GBGW12A at prodigy.com (MRS DENISE M MALLOU) added:
For breakfast: A bagel with rhubarb jelly. (It's really very good)
Also toasted tapioca bread sprinkled with just fructose.
Toasted tapioca bread with rhubarb jelly.
For lunch/dinner: Baked rabbit wrapped in a tortilla and dipped in some gravy made from the drippings. I ordered some white sweet potato and tapioca flour to use as a thickener.
I made venison burgers and placed between two pieces of tapioca or white sweet potato bread. You can make a little gravy with the venison drippings too. There's not much there, but you can get a little.
I made some rabbit soup and just threw in all the allowed vegetables. I served this with some white sweet potato or tapioca crackers that are really quite good.
I've tried making a rhubarb drink with the concentrate from the boiled rhubarb. It's really pretty good if you put in lots of fructose.
On October 9, 1997, Jennifer L. DeBok <jdebok at tsi-pdx.com> suggested:
In case anyone else has not yet tried it, I wanted to share how I have been making meat without spice tastier.
Use tapioca flour or any of the other exotic flours and coat the piece of meat with it. Putting Granose on first will make the flour stick. You can even do this with mixed ground meat patties. Then fry them up in a skillet.
They taste great! Last night I had lamb chops in tapioca flour and it was fantastic! Just like having real food. [Editor - someone else added that this works well with fish also.]
Try some "rabbit stew" using the Crock Pot Lamb Stew recipe in the 1996 Pink Book. Rabbit (aka "chicken" to the kids) is not as strong flavored as lamb. Cooking in a crock pot helps make the consistency like that of other meals if you tend to use the crock at other times also.
On October 11, 1997, Stan Rohrer <stan.rohrer at scitexdpi.com> provided:
CROCK POT RABBIT STEW
This is a variation on the Lamb Stew recipe from the 1996 Pink Book.
4 qt. crock pot
2 or 3 carrots - peeled and cut into 1" pieces
3 to 5 stalks celery - 1 " pieces
3/4 cup minute tapioca - sprinkle in as the pot is filled so it doesn't clump
2 tsp sea salt - sprinkle in as pot is filled
1 cup shredded cabbage - outer leaves only
1 sweet potato - peeled and 1" cubed
(include s. p. if sweeter taste is desired, good with buffalo)
7 or so potatoes - peeled and 1" cubed
(some smaller slivers help thicken the stock if desired)
(fill the pot, leaving just enough room for the meat)
2.5 to 3 lbs rabbit (not de-boned)
I've also used buffalo (allowed by doc) and like it very much.
3 cups pure water
I add these to the crock pot in the order listed above. Cook on low (275-300 deg) for 8-10 hrs or on high (350-375 deg) for 6 hours. I can eat breakfast, lunch, dinner, and snack from a full pot.
I find the rabbit bones a bit of a hassle during eating but it's easier than trying to de-bone before cooking.
I usually start the stew in the evening and eat from it all the next day.
On January 23, 1998, micky absil <mick at passport.ca> described a snack:
I take potato flour and a little tapioca flour, add salt and water. Knead and hand flatten into round patties. I put them in my toaster oven for about 40 minutes or until brown. There crunchy on the outside and soft on the inside. Easy and cheap.
On December 3, 2000, <Cafrin at mail.com> described a sweetner idea:
We are also reactive to fructose, so I use sweet potato syrup - after I bake sweet potatoes I peel them and let them cool in a bowl in the fridge. After a few hours, there is a very sweet thick brown syrup in the bottom of the bowl. It has really saved my kids - they just hate the diet and are so grateful for the sweet rhubarb tapioca we make with it.
On May 30, 2001, Marjorie Rosenfeld <marjorierosenfeld at earthlink.net> described her casserole and fish ideas:
Re recipes for EPD, after discovering that my allowed meat and veggies at EPD time were lamb, celery, cabbage, and parsnips or rutabagas, I decided to combine all of these in a casserole dish. Parsnips are easier to slice than rutabagas, but I love the resulting dish with either and look forward to eating it each time I have EPD. I generally use round-bone lamb chops, which I put into a glass casserole raw and bake for a bit, with a glass lid on the casserole, until the chops look brown. Then I put the cut up or sliced vegetables on top and bake until these are done. I trim the chops before baking them but still get a nice gravy with just enough fat in it to be flavorful. I've also used a small piece of leg of lamb and roasted it first until it's tender enough to slice and then put it in the glass casserole with the vegetables to finish the dish. The baking or roasting temperature should be 325 to 350 degrees, and I sprinkle on some salt after everything is done. I don't use granose, as I seem to be sensitive to it.
Inasmuch as I wasn't very enthusiastic about the idea of dry fish or dry lettuce either, I decided to combine these. Several times I've wrapped swordfish in a couple of lettuce leaves and then poached it in a skillet with a little of my bottled water. The fish stays moist, and the lettuce (which I throw away afterwards) imparts a delicate flavor to the fish.
5.3 Is the VMD or VVMD for me?
[Section Updated: 3/01]
For some theory discussion, see also: The rotation diet has served me well, what's wrong with it? (Top EPD FAQ).
See also: the Definition of Masking/Unmasking. (Top EPD FAQ).
For patients who have very severe food sensitivities, a Very Mixed Diet (VMD) or Very, Very Mixed Diet (VVMD) may be in order in the weeks around the EPD shot. Failing that, a diet of fructose, of UltraClear, or fasting may be ordered by your doctor. VMD or VVMD may be chosen on your own though most doctors will provide instructions when they feel the problems warrant. The others may affect the EPD action and should only be done under the observation of your EPD doctor. Rarely is VMD or VVMD needed. Many people need only avoid their allergenic foods and need not do the VMD or VVMD. VMD and VVMD are not directly related to EPD or a part of the protocol. They are a last-resort strategy for getting nutrition with little or no allergic reaction into persons with food allergies so extensive they have trouble finding "safe" foods. As such they may help during careful times or to keep the most food-allergic person alive until EPD starts to help.
VMD or VVMD are basically degrees of mixing foods. Note that Dr. McEwen only speaks of a VMD which likely covers all the discussions here. The differences and degrees discussed here as VMD and VVMD are definitions manufactured in the EPD Mailing List discussions.
For VMD, typically 8 or 10 or more foods are used together at the same sitting. For VMD these may be used individually or mixed together. The idea is to reduce the peak exposure, or large scale exposure, to any one of the items by using more total items and using less of each individual item. The idea is to not use foods in their masked state and to not use foods in there reactive state. The idea is to use very small amounts of their sensitive foods without starting reactions. Using a large number of foods can help decrease the intake of sensitive foods to a tolerable level. If the VMD still produces negative reactions try the VVMD so that each food in the mix is a substantially smaller percentage of the total. The objective is to create a mix which has such a small amount of individual allergens that the mix does not trigger an allergic response.
Concerning VVMD - A rotating diet is taboo with EPD because of the large quantities (often of a few items) and cyclical rotation. VVMD takes this to the extreme other end of the spectrum - small quantities, many items, and non-cyclical. For extreme VVMD, some people have combined 20 or more foods in a blender, and mixed them to a soup "slush". The more foods (thus in very small percentage amounts of each) the better. For food severe patients, the foods most likely include ones with known problems (an attempt to eat something rather than nothing, but in quantities which have less chance of triggering a sensitivity). As a matter of fact, it seems the combination may work best with more rather than fewer problem foods. The pureed stuff kind of looks like baby food with about the same texture. It may taste like a combination of beef stew and pea soup. It does get pretty boring to eat, but for people who need it, their diet is likely already very boring without VVMD.
The VMD and VVMD challenge then becomes finding creative methods of doing the blending and mixing that is still reasonably satisfying to eat. The EPD Patient's Lifestyle and Cooking Guide book by Nicolette Dumke is exceptionally useful in this regard. In addition to EPD critical days recipes, this book contains over 30 VMD recipes that contain multiple food sources presented as traditional dishes. Her approach is to make some basic building blocks such as mixed flour, mixed meats, mixed fish, mixed vegetables, and mixed fruits. From these building blocks then recipes are made for various food dishes. Perhaps Nickie's techniques can help some patients avoid the multi-mix pureed level of VVMD. [Editor: Order the book from Allergy Adapt, listed elsewhere herein.}
VVMD might reduce the need for digestion and speed the intestinal processing (perhaps faster digestion allows less whole food leaking through the gut wall to cause allergy reactions) due to the use of the blender.
This writer is not quite sure of the actual response implications so don't include food items which may cause anaphylactic reactions.
VVMD users which still get allergic reactions may have to eliminate some food groups which are found to cause them problems even in these minute quantities. Grains have been found to be a common item. After a few EPD shots they may become tolerable and the user should experiment with adding back in very small portions to the mix.
Users might consider making a large quantity of the VVMD stuff and freeze portions to be used days later. Freezing might also help reduce the temptation to snitch some of the whole foods during preparation, if food is otherwise prepared on a daily basis.
Some people have reported that VMD and VVMD works well initially and then is less helpful as EPD starts to fix some of the food problems. They say because the VVMD likely contains some of your allergenic substances it also has potential to make your allergy symptoms worse for a while. When VMD and VVMD are noted as becoming less helpful, they suggest it may be time to quit and test foods for ones for which you can now tolerate. This is curious as the descriptions from Dr. McEwen suggest that VVMD or VMD should get more tolerable since EPD is moving the sensitivity trigger point up to allow larger quantities of foods. The objective of mixing small quantities of a great number of foods is to find a small enough food quantity for each food that will not trigger a sensitivity. If the VMD mix is no longer working then it may be possible that there are still some food quantities that were to much in the mix and are becoming unmasked. The user may need to work more with the mix or add more foods to the mix so that the problem foods are an even smaller portion of the total. Dr. McEwen has suggested that VVMD or VMD will be useful when the going gets rough but should be of less need after 3 weeks following the shot when the main action of EPD "kicks in". As the shot wears off it may again be necessary to start the VVMD or VMD until the next shot becomes effective.
Jerry Straks <jstraks at switchboardmail.com> has been on a long round of VVMD and provided some information which has been summarized here. Additional information was produced with reference from the 1997 EPD Conference tapes.
On 2/3/97, Marge Jones <mastent at enaila.nidlink.com> wrote about VMD and VVMD:
Chewing is part of what makes food satisfying. I never had to live on VMD but I elected to do so a few times briefly (few days) to see what it was like. I did things like a VM veggie stir-fry, including some of those oriental veggies we don't eat much. I did grind meats and chicken and turkey together to make VM meat balls, but did a separate "meat ball" mixture of different kinds of fresh fish, so meals would taste different. After mixing, the only way to go is to freeze the little balls, either cooked or uncooked. (My VM meat balls were baking while I was doing the veggie stir-fry.) I then threw together as many fruits as I had on hand fresh or frozen, into a VM fruit cup. This is quite acceptable (to me) and tastes good, too. Can only imagine how much better the stir-fry will be with Granose (instead of water) to cook in.
VM grains are fun and delicious. One can easily mix equal amounts of about 8 different flours (I do this without including wheat or corn) and prepare pancakes, using any generic recipe. Basically, add an equal amount of water, plus a pinch of salt and tolerated baking powder. That's it. If I have enough grains on hand, I even save amaranth, quinoa, buckwheat, tapioca starch or arrowroot, and perhaps chickpea, to make a non-grain mixture - to alternate with the grain pancakes. Top with VM fruits, perhaps using a blob of applesauce rather than apple, to provide a bit of a saucy texture.
Blueberries, raspberries (be sure there's no sugar added!), peaches, and cherries are all available frozen. I mash the tiny piece of banana with the applesauce for that saucy texture.
[Editor - consider a breakfast of 8 grain pancakes, with a 6 fruit topping, and meat balls of 6 meats, has 20 food items which may be sufficiently processed for the VVMD user. Similarly, use the pancakes as the " round bread" for a sandwich going into the lunch bag for work or school.]
One thing I feel people can do, whether advised to or not, is to omit the few foods that really, REALLY do them in. This may mean omitting beef (and veal) from the meat mixture, or the chicken or turkey, whatever. It may mean to omit legumes from the veggies. I know the point is to eat so little of the food as to not elicit a reaction, but if one can obtain enough variety to manage without the BIGGIES being included - why not do so? (Ain't no smaller portion than none!)
Another point, to make meals somewhat different from each other, is to obtain different veggies. The cabbage family alone can be used for one stir-fry - bok choy, cabbage, broccoli, cauliflower, kohlrabi, etc. Add selected items from smaller families, such as green scallions. Then go back to bean sprouts, flat pea pods, green beans, green peas, and perhaps carrots. Naturally these would all taste better with soy sauce, or a good sweet and sour sauce, but we're talking about a relatively short period of time. Further, the spouse or other non-EPD persons present can add those things easily rather than having to prepare two separate meals. No small matter, in surviving a tough time. Consider also VM soups and stews. Now, with Granose, Yum!
On 2/6/97, Carol Ginsberg Brown <cgbrown at xensei.com> offered these tips:
I use a meat mixture that consists of equal parts:
turkey
chicken
rabbit
pork
lamb
beef
The butcher at my whole foods supermarket grinds them all together for me (even de-bones the rabbit) so I don't have to mess with it. Then I wrap them in 1-pound packages and freeze them.
For the fish, I put everything in the food processor and pulse to combine without making a mush.
For the grain I follow Nicolette Dumke's oven method, which I find much easier than Len McEwens recipe.
For the flour I make a gluten-free mixture using these flours:
tapioca (good for baking)
quinoa
millet
brown rice
buckwheat
I may try adding chestnut flour and some other stuff next time. Len McEwen says use 2 parts buckwheat but I don't - it's very strong - and haven't had a problem.
On 2/6/97, Jozsef A. Toth <jtoth+ at pitt.edu> offered his 20+ VVMD soup recipe:
To make this easier, you'll need a large stock pot. You can get cheap stock pots at most larger discount stores. You'll also need a food processor.
Ingredients:
1 lb. ground beef (I use sirloin)
1 lb. ground pork
1 lb. ground lamb
1 lb. ground turkey
1 lb. ground chicken
(for the poultry, in particular, make sure they don't have any additives)
1-2 lb. carrots
5 large white potatoes
5 large sweet potatoes
1 head broccoli
1 head cauliflower
1 head cabbage
2-3 green peppers
2 large onions
1-2 lb of the 15 bean soup mix
(make sure it doesn't have any spices mixed in)
.. as many other fresh vegetables you can think of and that are "safe"
for you e.g., rutabaga, spinach, ... ..
2 gal. distilled or purified water
1-2 cups white/brown rice
1 can tomato puree (check ingredients and make sure it doesn't contain
citric acid)
few tablespoons ground garlic or several cloves of fresh garlic sea
salt small amounts of other spices such as oregano, parsley, etc.
(this might be considered optional for some, but it adds a lot of flavor)
Also note the absence of grains (except rice) from this recipe. [ Editor - Joe is very sensitive to grains so he chose to avoid them.]
Procedure:
Prepare the beans, by rinsing, soaking and cooking, a few hours in advance. It takes me about 2 hours to get the beans as soft as I like them.
Prepare the smaller vegetables by peeling and slicing them or cutting them down (like the broccoli). Get a quart or so of water boiling in the stock pot and add all the vegetables and cover. Peel the potatoes.
In a large skillet, brown all the ground meats and drain the grease. Add the onions and brown some more. At the same time microwave the potatoes.
For this many potatoes it takes about 20-30 minutes.
In about 30 min. the vegetables will be sufficiently steamed and will take up less space in the stock pot. Remove these into a large bowl (or bowls) and retain the water. Add the rice to the water and let it start cooking (rice takes 20-30 minutes).
Using the food processor, grind down ALL of the cooked items mentioned above down to a pulp, including the ground meats. This, to me, is the key of the VVMD---make sure everything is nice and small. Add all this processed stuff back to the stock pot and start stirring. You'll need to add more water. At this point, add the tomato puree and the spices and stir, stir, stir.
Let the whole thing simmer for another 30-60 minutes and stir frequently.
When it is finished and cooled, you'll have to figure out how to store that much. For me, a large stock pot's worth lasts well over a week. I put some in zip lock freezer bags and freeze it. I put others in smaller pots and keep them in the fridge. It's safe to say that it will keep refrigerated for at least a week.
Remember, I've done this for days 5-14 after the shot when I am finished with the critical period diet. I've also eaten it for the 4-5 days before the critical period. Some have eaten it exclusively for the entire period between shots until they've gotten better. That would drive me insane, but I was also not that sick.
The VVMD philosophy, according to J Straks, is, the more you add, the better off you'll be. If you're a vegetarian, I strongly suggest you put your beliefs aside for a while until you get better and use the meats, since they provide a lot of protein and flavor. I guess the beans do as well, but the meat also provides some substance---"sticking to your ribs".
Be creative! Put in eggs, beets, or whatever else might come to mind. You'll also have to be mindful of the Vitamin C contributed by some of the vegetables. E.g., a serving of broccoli, cauliflower, or green pepper has about 100 mg. of Vitamin C. I never tried to figure out what a VVMD serving might contain.
On 3/10/01, Sandy <moehopper at yahoo.com> offered mixed diet thoughts:
I have found that if I stick with a mixed food or very mixed food diet for a few weeks after epd I do better. It took me awhile to come up with this seemingly obvious plan - but it is simple for me to manage while working.
Walnut Acres has a 20-grain pancake and waffle mix. I make a batch of this and it lasts for about a week - I eat 1-2 small ones each day for breakfast. I will eat them plain, with jam, or with maple syrup. This gives me 20+ foods.
For lunch I have a cup of vegetable soup and a fruit mix. Both of these I made ahead of time and have frozen. To pack lunch, I put a container of each in my bag and I'm ready to go. Vegetable soup - 3-5 different meats - whatever is available; 12-14 vegetables. If possible I use organic and range free; fresh produce if it is in season. This gives me 15+ food items. Fruit mix - I have enough small containers for 2 weeks all lined up and make a 2-week supply at once. I put in 14-16 different fruits. Each container gets 1 strawberry, a chunk of pineapple, a few grapes, a few blueberries, etc. 14+ food items.
For dinner I then try to have a meat which was not used in the soup, salad with veggies such as cucumbers, radishes, etc (things that aren't soup veggies) and a vegetable (again a veggie I didn't include in the soup - broccoli, cauliflower, beets, etc.) Fruits that are not in my frozen mix are also an option (apple, banana, orange, or any that don't freeze well). I usually can add 6-10 more food items here. After 2 weeks of veg soup and fruit mixtures, dinner is nice because it isn't a medley of everything.
By doing this, food prep doesn't take forever each day and it allows me to have foods I can easily take to work. If I am really organized, I make the soup and fruit mix before the shots. If not, I wait until I am allowed regular foods before I work with all the items.
I am able to get 50-60 different items each day. People at work always comment on how good the soup smells and how good the fruit mixture looks! It works for me.
5.4 What can you tell me about Glycerin?
[Section Updated: 6/97]
Food grade Glycerin and water is used by some EPD patients as a source of sustenance if foods are stopped for the EPD shot day or for the critical three days. Some food sensitive people find that all food avoidance around the shot will enhance the desensitization of foods. Doctors don't often recommend total food avoidance but may suggest only some of the foods described for the critical three days. Glycerin may be a supplemental item if needed during this time. Check with the doctor for this protocol and approval for use.
Some people have been intolerant to Glycerin. Be sure to test your sensitivity to this item before committing to it for an EPD shot.
5.5 What can you tell me about Fructose?
[Section Updated: 6/97]
Fructose and water is used by some EPD patients as a source of sustenance if foods are stopped for the EPD shot day or for the critical three days. Some food sensitive people find that all food avoidance around the shot will enhance the desensitization of foods. Doctors don't often recommend total food avoidance but may suggest only some of the foods described for the critical three days. Fructose may be a supplemental item if needed during this time. Check with the doctor for this protocol and approval for use.
Some people have been intolerant to Fructose. It is also believed that Fructose will feed some gut organisms and therefore may produce problems for people who have certain gut dysbiosis problems. Be sure to test your sensitivity to this item before committing to it for an EPD shot.
On Aug 21, 1996, ephraim at cmns.Think.COM (Ephraim Vishniac) said:
While fructose is found in a variety of fruits, in small quantities, it's not the predominant sugar in any that I know of. (The name "fruit sugar" is rather misleading.) Commercially, it's cheaper to make fructose from any of the major sources of cheap sugar than to refine it from fruit.
On Aug 21, 1996, mgioanni at totacc.com (Marilyn Gioannini) added:
It might be easier said than done - I asked at my excellent local natural foods store, and their bulk fructose is supplied by NOW foods, and is derived from corn. Another major supplier, TCW, also says their fructose is derived from corn. Asked, "Do you know of any fructose that is not made from corn?", they said "No." Labels on foods that have fructose as an ingredient do not give this information, in my experience.
Do you know where a person might buy fructose that is *guaranteed* not to be corn based? This would be very useful information.
I think Ephraim is absolutely right when he says that the cheapest source is likely to be used - and that is definitely not fruit!
On Dec 23, 1996, Dapacc at aol.com <Pam> wrote:
Most fructose is made from corn, because it is CHEAP and making it with "fruit" is not. Many people are allergic to corn and it's multitude of by-products. There are a few who don't react to "fructose" but they may not realize or even have checked to see if it is one of the few brands made from beets. The only way to be sure of your fructose's ingredients (you may have noticed that it is touted as naturally occurring "fruit" sugar but ALL the packages I've ever seen do not say WHAT "fruit" they are using) is to check (ie: call or write) the manufacturer and ASK. That's how I found out that the fructose in my health food store was made of "corn". I was alerted to the presence of corn in "fructose" from a very lengthy list of "hidden ingredients" given to us by our Provocation/Neutralization allergist about 4 years ago. I know that when my son goes onto the diet, I will NOT be using "fructose" unless I am certain that it is made from beets. I thought the whole idea of the "critical" days was to keep all common allergy-causing foods out of the system.
On Aug 3, 1996 : MARTHA RALL <mrall at kumc.edu> suggested:
In Nicollete's Dumke's booklet she lists a source for beet-source fructose:
An Ounce of Prevention
8200 E. Phillips Place
Englewood, CO 80112
(303) 770-8808
I haven't tried them, but they may be worth contacting.
5.6 What can you tell me about UltraClear?
[Section Updated: 7/00]
On Aug 20, 1996, Stan Rohrer <stan.rohrer at scitexdpi.com> said:
My doctor says UltraClear is not in use for EPD. Perhaps that means in his practice since the 1996 Pink Book does reference it and people on the mailing list have used it. My doctor says he does use Fructose on some occasions.
On Aug 15, 1995, Jozsef A Toth <jatst3+ at pitt.edu> said:
"UltraClear (UC) provides nutritional support for hepatic [liver] detoxification. UC is a pleasant tasting, easily digested and absorbed powdered formula, that is formulated with a patented hypoallergenic rice protein concentrate of high biological value. This protein concentrate is blended with high molecular weight rice dextrins as the carbohydrate source and medium-chain triglycerides as a source of readily metabolized lipid. UC is fortified with a specific blend of US pharmacopeia (U.S.P.) vitamins, minerals and accessory nutrients to support both cytochrome P450 and Phase II hepatic detoxification activities. UC also contains high levels of antioxidant nutrients, such as Vitamin. E, selenomethionine, beta-carotene, L-glutathione, L-cysteine, vitamin C and N-acetylcysteine to provide hepatic protection against oxygen free radicals generated during the detoxification process. When blended in water, UC provides anisotonic, balanced medical food as a supplement or meal component used in situations requiring support for hepatic detoxification.
Indications: Based on our clinical experience, UC nutritionally supports patients with dietary needs related to:
Hepatic Detoxification
Chronic Fatigue Syndrome
Arthralgia and Myalgia
Management of Endo and Exotoxicity
Management of Food Allergy
Chemical and Environment Sensitivities
Alcohol and Chemical Dependency
This product can only be used for three weeks. There is a longer-term "Ultra Clear Sustain" formula for extended use which involves two drinks a day. There are also some other Ultra Clear products. You can call Metagenics at 1-800-334-1700 for info but have to order it through your physician.
On July 28, 2000, Chris Wilson <cwilson379 at aol.com> said:
It's [Ultra-Clear] classified as "medical food"; it is a powder made mostly from brown rice, but it has a lot of nutrients that are necessary for gut repair. It's made by the Ultra Balance Corporation in Washington. It's meant to be taken only under a doctor's supervision, and the canister has a toll-free number only for healthcare practitioners - 800-83-9660. They have a website - www.ultrabalance.com/ After checking with my doctor's office, though, I started buying mine at the Abrams Royal Pharmacy in Dallas, the compounding pharmacy that Ester mentioned, because it's cheaper there. Before I was taking Imodium when I had these spells, and Imodium A-D really stops diarrhea in its tracks, but I'd have to keep going back on it after a couple of days. With the Ultra Clear, I can do without it as long as I don't forget to take it, and don't eat anything too irritating.
Some people have reported becoming sensitive to rice when on the UltraClear routines.
5.7 What can you tell me about the Granose or Tomor margarine?
[Section Updated: 10/01]
On Jan 17, 1997, Marge Jones <mastent at enaila.nidlink.com> said:
I just learned that Granose, the "OK"-for-EPD margarine from England, is finally becoming available in this country. It is being carried exclusively in this country by Klaire Laboratories, Inc. They do not sell direct to patients, but each and every EPD doctor will now have the option of ordering it for their patients. Audrey Davis named a distributor I didn't know about in her 1/6 comments (Tina Conrad at HEAL). A representative from Klaire said that an allergy supply company called NEEDS in Syracuse NY (800-634-1380 ) and Wellness Health and Pharmaceuticals in Birmingham (1-800-227-2627) [Editor: see also http://www.wellnesshealth.com/] will be distributors for this product, because some doctors may balk at handling it for their patients (especially if they are short on refrigerated storage space).
From a promotional flyer, ingredients: "vegetable oils, water, salt, emulsifier (lecithin, mono- and diglycerides of vegetable edible fatty acids) color (beta-carotene, vitamins A and D2."
Soy allergics, take heart. They go on to say, "Granose is distantly derived from soy; however, it is generally well tolerated because the soy protein is denatured so that the body doesn't recognize it as foreign. Physicians who recommend Granose generally restrict its use [to less than 8 ounces total] during the 3 or 4 critical days."
Other tidbits from the flyer I'm quoting:
* excellent for table use, baking and frying
* use on potatoes and other vegetables
* use as a lip balm and skin moisturizer during the 3 critical days of EPD
* made with 100% non-hydrogenated oils
* contains no animal or dairy products
Are you excited yet? I can hardly wait to get my hands on it!
On Feb 1, 1998, Sue Green <Sue at cadmore.demon.co.uk> said:
Granose and Tomor - both are available in the UK if anyone is coming over. Tomor is actually a kosher margarine - is it worth trying any specialist Jewish kosher stores or asking any organizations what they use and where they get it? It is rare over here except in areas of Jewish population concentration (eg Golders Green in London), and one large supermarket chain called Sainsburys stocks it in some of their very large stores. Granose is widely available in UK health food shops, including the widest chain called Holland and Barrett.
Wellness Health and Pharmaceuticals in Alabama reportedly carries Granose margarine. Call 1-800-227-2627. Reported 2/1997. [Editor: see also http://www.wellnesshealth.com/]
On 22 Nov, 1999, Elizabeth Stroud <stroud0718 at earthlink.net> described her use of Granose:
My doctor instructed us to use 1/8 or less of the tub during the four critical days. I slice the whole chunk into 8 pieces then put a small piece of wax paper in between the slices. You can the refreeze it and it is easier to get out the portion that you need.
On Jan 13, 2001, Jackie <jabaker56 at cs.com>, located Granose:
I have bought my Granose at Needs, too. Website- http://www.needs.com. It runs somewhere between $14 to $17 a pound, plus shipping. I don't remember exact cost. My second tub I purchased at a natural food market in Dayton, OH. It was around $11. I don't know if they might ship it to you. Here is there info:
Healthy Alternative
6204 Wilmington Pike
Dayton, OH 45459
(937) 848-8881
On Jan 31, 2001, <scrotalking at yahoo.com>, indicated Granose may no longer be available:
As of today, Mike at www.needs.com says they have discontinued Granose margarine. They say the manufacturer has stopped making it indefinitely.
On Oct 26, 2001, Marjorie <marjorierosenfeld at earthlink.net>, pointed to Granose info:
Granose is made in the UK by a firm called Haldane Granose Foods Group. They have a Web site: http://www.haldanefoods.co.uk/ (dead? 5/7/08)
On Oct 30, 2001, Linda <lindajcraig@yahoo.com>, indicated Granose may no longer be available in the USA:
Just yet another FYI: I contacted by email the company in England that produces/sells the granose margarine as well as other granose products. There is NO shipping to the US at this time. They put me on a list to let me know if/when they can resume sending to US. So, unless you luck into a store that still has some on hand, you won't be able to get any. Bummer....
See also below: Are there sources of EPD diet foods, supplements, and other items? (Top EPD FAQ).
5.8 The rotation diet has served me well, what's wrong with it?
[Section Updated: 9/97]
On Aug 2, 1996, Stan Rohrer <stan.rohrer at scitexdpi.com> related:
My doctor said to use the rotating diet no longer than three weeks after the second shot. At that point try challenging new foods into your diet.
[Editor - I checked the 1996 Pink Book and did find a statement saying rotation is counterproductive, especially after 3 weeks after the second shot.]
Based on my interpretation of the 1997 EPD Conference tapes, the following description has been attempted in layman's terms.
The rotating diet incorporates "peaks" of large food quantities. With EPD, these large quantities can be high enough to mask a sensitivity because they overload the reaction system. However, EPD eventually changes this point of overload in your system and the same large quantity of food may land the patient squarely into the reaction zone that has moved (e.g. they begin to feel very ill through no obvious changes in the diet). When this happens there may be a gap under the reaction zone which allows very small portions of a great many foods to be tolerable (see VMD). When possible it is better to use small quantities of food which are under the point of sensitivity and let this reaction zone move to allow larger food quantity. Through this transition people may move from rotating a few foods to using many foods.
Additionally, rotated foods are often found to actually be allergic in the patients system but the sensitivity is masked by the rigid rotation schedule. These foods are candidates for "fall-out" (apparent new sensitivity) during EPD treatments.
It turns out that eating the same food in 5 days or less is actually a prime routine to effectively mask a food sensitivity, per Dr. McEwen. He says that on day 8 the sensitivity is at it's peak. At day 12 the reaction ability has faded back to a baseline. Over the next 3 months, the sensitivity will reduce somewhat if the food source is not encountered during the entire period.
The 4 or 5 day rotation diet has certainly been very beneficial to it's users because it allowed them to survive with somewhat less problems that not using a rotation. However, with EPD progression, the rotation diet will likely cause substantial symptoms as foods are unmasked. Food can be masked by the combinations of both quantity and timing. EPD will change the immune systems point of sensitivity and as such will "unmask" some foods which were thought tolerable but were tolerable only because they were masked.
It might be reasonable, before starting the EPD treatments, to break the rotation cycle and see if sensitivities are noted that were not expected. You may find you are sensitive to all foods in your rotation. Dealing with this issue before crashing in EPD might be useful if it is possible. For a few days, take your "good" foods and use them in a VMD, or at least severely modify the rotations. If you have problems during this pre-test, EPD is not jeopardized and you can change your diet mid-stream. This may provide useful information for the weeks after the EPD shot when the patient is to avoid his allergenic foods.
5.9 Is there a simple test for my food allergies that won't get me thoroughly trashed?
[Section Updated: 9/97]
On Nov 12, 1996, Stan Rohrer <srohrer at scitexdpi.com> suggested:
I put a bit of the food under my tongue for 10 seconds. Kind of a non-controlled provocative test. I've used this technique on foods, and other substances in question, for many years. Under the tongue is the fastest non-injection way to the blood stream and, with a little keen observation, may help detect a reaction without introducing a larger amount of the substance as with ingestion. For things like my reactions that happen within seconds, it's an easy way to detect a problem and not over-do it. This trick can also be done at restaurants or when visiting friends without many people noticing your testing.
Note that this is probably not a good thing to try with potential life-threatening reactions unless someone else is available to get medical help.
It also may not be effective for those whose reactions are delayed.
See also: Definition of Provocation/Neutralization. (Top EPD FAQ).
Per the EPD Conference tapes of 1997, Dr. Shrader suggested that kinesiology has a place in testing where the practitioner is a good reader of symptoms. This technique can be used as a confirmation for other testing.
On 2/5/97, Marge Jones <mastent at enaila.nidlink.com> commented on another possible technique for consideration:
Muscle testing, sometimes called kinesiology, is a hands-on way to determine what does and does not agree with one's body at any given time. In other words the "answer" could vary from time to time - On Tuesday the body may say "no" to a food, say peanuts. But on Friday the answer may be "yes".
Since this an experiential type of technique, it's hard to describe. But I'll try.
Did you ever see any one holding their arm out at right angles to their body while someone else tried to press the arm down? This is a common way of doing it - a strong resisting muscle is "yes", positive, affirmative, true. A weak muscle is a negative response suggesting that the food being tested would disagree with the body at that time. This works best if the person's watch is removed, and perhaps any metal chains from around the neck, which might interfere.
Some people hold the food being tested over the thymus gland (kind of high on the chest below the clavicle - where Tarzan and Popeye beat on their chest). I find it adequate to just look at the food as I say, "Peanuts (or whatever SPECIFIC food is being tested) agrees with this body at this time."
I also have learned to do it by myself, with my fingers, making it much more useful.
Visualize sitting in a restaurant reading a menu, with your hands under the table busily testing to see if you should order the plain broiled chicken or some form of beef - or the scallops. It goes a long way toward reducing reactions.
If you lived close, it would be so easy to demonstrate. But not easily described. The very best advice I can think of to anyone interested in pursuing this farther is to ask in a health food store if they know of anyone good at it who might mentor you. I think many chiropractors use the technique. However, they might be happy to do a series of tests for you, rather than to teach the technique itself.
I believe two things about muscle testing. 1) It's only as reliable as the person doing it is competent. (Not to worry, as I said it is very easy to learn.) 2) What we can learn is limited by our ability to think of and ask the right questions.
Example: When I was learning to use muscle testing, and had already grown to trust it, I tested for peanuts one evening when I needed a snack. I tested strong, so I took the peanut jar into my study and munched as I worked. But soon my head started to "buzz" like I might be reacting to something. I tested to see if I was reacting to the peanuts - the only thing I'd eaten in quite some time. I tested strong (yes). Yet I had gotten what I regarded as the "go ahead" in testing. After pondering this, I asked if I had eaten TOO MANY peanuts. Yes. Then I said "How much could I have eaten with no reaction?" I suggested different quantities and got a strong positive on 1/4 cup. Well, with peanuts, that's nothing. I know I had at least 1/2 cup. So you see, I didn't ask enough questions early enough in the process. But I satisfied myself that it was I who had goofed rather than a failure of the muscle test.
Tip: For it to be meaningful you have to be able to recognize a clear negative and a clear positive muscle response. So always start by saying, "My name is (say your first name)" for a strong positive. Then say, "My name is (something else, perhaps even a name of the opposite sex) to get a strong negative." This is because there is such a thing as very occasionally having the energy flow in the meridians "reversed", and you'd show this by giving all yes or all no answers. If this happens, do not proceed, as it would be inaccurate. Find a local mentor. Maybe your EPD doctor could even suggest someone with whom you could work.
On 2/10/97, Marge Jones <mastent at enaila.nidlink.com> added:
Muscle testing is also called kinesiology. It is a very hands-on, experiential technique, and difficult to describe. About two decades ago, + or -, John Diamond wrote "Your Body Doesn't Lie". I think there may be a few - very few - other books by now. I think the most we can do would be to suggest people inquire around in their community, perhaps in a health food store, or perhaps they could find a chiropractor to work with.
The problem with getting a professional involved is that they want to work with the person and get paid for it - which still wouldn't be all that bad IF they agreed to teach self-help techniques. It's very freeing to learn the skill to apply for oneself. Then you're free to "ask your body" to identify the most agreeable choices for breakfast, lunch and dinner - and anything in between. Doing so really cuts down on reactions.
5.10 Do I really have to take the gut preparations for fungus, parasites, and the like?
[Section Updated: 6/98]
If your doctor is not assigning a pre-shot regimen of medications to kill off Candida and other unwanted gut guests, he may be missing the boat. If your EPD shots are doing nothing then he very likely is missing the boat. It seems enough people have found EPD ineffective due to gut problems, including parasites, that the gut cleansing has become a normal part of the EPD routine. It's a whole lot more effective to do the gut cleansing, and have EPD be effective, than to wait until after the cost and time of 4 or 5 shots and then determine that it is not working, only to begin all over again when the gut problems are fixed.
Your medical history, or apparent failure of EPD, are among of the prime indicators of the need to make special lab tests for specific parasite problems.
If you do have a parasite, bacterial, dysbiosis, or fungus problem in the gut, note that the treatment will kill it off and this produces toxic products in the blood stream as a result of the dead organisms. This in turn may make you feel ill for a few days as the body rids itself of this waste. The common program generally starts 10 days or so before the shot for most people. If testing has shown a particular problem, the treatment will be tailored specifically to that problem. A stool analysis is one way to determine the presence of some parasites. Following the doctors treatment orders is required as some strains become resistant to the attempt to kill them if the protocol is not followed closely.
On 28 Jun 1996, Kevin McLoughlin <kmclough at us.oracle.com> commented on the possible use of antibiotics during gut preparation:
The main reason for pretreating with antibiotics (specifically, antiprotozoans and antibacterials) is the same as the theory behind pretreating with antifungals and following the EPD diet: Since the EPD antigen mixture contains small amounts of antigens from bacteria, fungi and foods, you need to reduce your circulating levels of these antigens to the point where the injection can create a higher antigen concentration than the ambient concentration. This creates a concentration gradient which your immune system cells (Langerhans cells and T cells) can follow to get to the injection site. If your circulating antigens are too high, the "signal" from the injection gets lost in the "noise".
To put it in less technical language: suppose you were blindfolded and led to an empty room, in which someone had opened a bottle of "Obsession", and you were asked to find the bottle. You could easily locate it by following your nose, to where the scent was strongest. But if you were asked to do the same task in the perfume section at Macy's, forget it! That would be analogous to the situation your immune system cells would be in if you didn't "clean yourself out" first.
It should also be noted that some patients clean the gut and then are so much better that they change their mind and do not begin the EPD treatments they were preparing for. Gut problems are significant, outside of the U.S. especially. Inside the U.S., the people heading into EPD have already exhausted other forms of treatment, including cleaning up the gut and allergen avoidance practices, and go ahead with EPD in the attempt to solve their sensitivities.
More information on Intestinal Dysbiosis and Leaky Gut issues may be found at:
http://www.healthy.net/hwlibraryarticles/galland/dybiosis1.htm
http://www.healthy.net/hwlibraryarticles/galland/leakygut.htm
Try also searches at Health World:
http://www.healthy.net/Architext/AT-Completequery.html
using "dysbiosis", "leaky gut", and "galland".
5.11 Do I really have to take all of those supplements?
[Section Updated: 8/00]
Yes, unless you and your doctor agree that some sensitivity to them prohibits the use. The studies have shown that body imbalances can severely reduce the results of EPD. The EPD treatments have been seen to be more effective when aided by the specified supplements. Reportedly, per Dr. Shrader, the purpose of the supplements is to build the strongest, most healthy, longest lived, T-cells with which to affect with EPD. The response length depends in part on the life span of the EPD treated T-cells. Follow the directions of your doctor. Don't add your own selected supplements, without the support of your doctor, as they may interfere with EPD.
5.12 What is the biggest "headache" with EPD (caffeine)?
[Section Updated: 2/97]
Pun intended! Getting off of caffeine, before the shot, for most people.
On Jul 17, 1996, Jozsef A Toth <jtoth+ at pitt.edu> suggested this approach:
The way I do it is to begin about 13 days before the shot. Each morning, I add one less teaspoon of regular coffee and add one more teaspoon of decaf; in my case this always totals 8 teaspoons for my usual two mugs. After about a week, I'm tapered down to nothing and am ready to stop for the allotted time in the Pink Book (I think it's something like 5-6 days before to a few days after.) I've done it ~~~Cold Turkey~~~ before and this method is much better. Tapering over 2 weeks and doing 1/2 teaspoon increments makes it even more bearable. I still get some of the withdrawal migraine and the mid-to-late afternoon sluggishness, but it's not nearly as bad as Cold Turkey.
[Editor - Sounds like a useful approach, Jozsef.]
For people who just can't get off in time, see your doctor for caffeine tablets. You are much better to taper off as noted above than to introduce another potential allergen source. Then again, your doctor may not give you caffeine tablets on your request.
5.13 What can you tell me about bagel's and tortilla's?
[Section Updated: 10/04]
On Aug 30, 1996, MARTHA RALL <mrall at kumc.edu> discussed Bagels:
There is a bakery in TX that makes delicious bagels compatible with EPD diet. (I tried them after a friend ordered some). They are VERY expensive, but contain only, for example, sweet potato flour & salt & water. They have other flours that they bake with, such as tapioca, potato, and other "exotics". They will also ship (again expensive) to anywhere in US I believe. Address is:
Francis Simun Bakery
3106 Commerce St.
Dallas TX 75226
Ph: (214) 741-4242
Fax:(214) 744-7656
The bagel I tried was sweet potato, price $1.99 each, buy 12 get 1 free [Editor- 1996 prices]. They also had a sweet potato bread on their price sheet, price $7.89/loaf. I didn't write down their shipping charges, which were steep since they ship 1 or 2-day express (essential for a preservative free food). One other thing--freeze your food IMMEDIATELY upon arrival, then thaw as needed.
These might be good for finicky kids -- you know, but HONEY it's BREAD! Honestly, the bagel I had was very good, chewy not soggy, even nice & brown exterior.
On July 8, 1997, Terri <Teridaktyl at aol.com> commented on delivery from Simun Bakery:
I've had the same types of [delivery] problems from Francis. He promises things, and quite honestly doesn't "deliver". Many of the patients in the office I work at try to order things from them to NO avail. I've called him on numerous occasions in behalf of my patients who have indeed ordered 8 weeks ahead and he never returns my calls. At one point I did catch him on the phone and he said that if they want it within 3-6 weeks they had to pay $50 to get on some special list that would make them "priority". I told Frances I thought he was charging enough for the bread & shipping, and that if he was that far behind maybe he should hire someone else. I realize that was pious of me, but we see 100+ EPD patients in our office that really depend on that guy.
On July 8, 1997, Carol Ginsberg Brown <cgbrown at xensei.com> commented on delivery from Simun Bakery:
At 11:46 AM -0400 7/8/97, Stan Rohrer wrote: I've called the bakery twice and they said they would FAX out a price list. Haven't seen it. Anyone else having such trouble? Anyone have a copy?
Francis Simun himself is a very nice guy and talented baker whose strengths are not entrepreneurial. I've experienced a fair number of major and minor snafus with my orders.
When dealing with the bakery I make sure to follow up any requests and/or orders in a few days with a phone call. I've found that persistence and patience are required. Given the sole-source and indispensable nature of the product, I figure that's the way it's gotta be.
[Editor - In 1997, some people wonder if the Simun Bakery has poor quality control of ingredients due to reactions to some of the purchased items. Perhaps the source is not diligent with keeping ingredients separated or with cleaning when switching ingredients. Let the buyer beware.]
On Apr 28, 1999, "Sheppard" <cna00012 at mail.wvnet.edu> added to the Francis Simun discussion:
My doctor's office told me that this person never provided any facts or test results to the EPD Society either---just made accusations---although the Society asked for this documentation.
Now the update... I have been corresponding with someone on another email list who happened to mention one day that she works at Francis Simun Bakery!!! I was astonished, to say the least!!! (The other list is totally unrelated to EPD, so this made me even MORE surprised to run into her.)
I mentioned the controversy which had taken place a few months ago, and she sent me the following reply, which is posted here with her permission. She has celiac's disease and cannot eat anything which contains gluten. If she DOES eat gluten she suffers nasty reactions.
Sandy
*****************
>That is very interesting indeed! As someone who works at the bakery, I can provide assurance that he is not using wheat as she suggests. I have been to her website because she has some things I would like to order that are not available to me here, and I was shocked by the page which went on and on about there not being anybody else in the country making this kind of bread etc...
Also, if this kind of contamination were really occurring, my whole family would be in the hospital or dead because we eat his bread every day.
Mr Simun is actually a very religious man who believes it is his calling to help people who need this kind of food, and he takes it very seriously.
I don't defend the bakery because I work there-only because the food has done wonders for us and many others, and I hate to hear someone slandering an honest and hard-working person.
Secondly, I also want to say that when I did work at the bakery during the week at Christmas time, I saw the bread made with my own two eyes so I am absolutely certain of the ingredients.
Kerry
On Apr 28, 1999, Ester Ford <mbiz at swbell.net> added to the Francis Simun discussion:
I would like to add something about Francis Simun Bakery. Living in the Dallas area, I am able to pick up my orders. On one visit, I got stuck in traffic traveling to the bakery, and by the time I was there, I was desperate for a bathroom. Normally they don't let anyone use their bathroom, but after begging desperation, they let me use it. Upon walking through the bakery area to get to the bathroom, I will say I was astounded by the sparkling cleanliness of the bakery. All areas I could see were marked by perfectionism in detail and cleanliness.
I also know that the people who work there are indeed many times big customers who need the alternative baked products. I cannot imagine any contamination of product being a problem. They get my vote (and my $$$!!!)
[Editor: So the Francis Simun Bakery concerns abound with strong for and against arguments on many sides. If you want to dig for yourself, check the mailing list archives.]
Special Foods, Inc. outlet (http://www.specialfoods.com (dead? 03/21/2011) (dead? 5/7/08)) has been reported by list members as having high quality control and caters to EPD and allergy clients.
On Feb 15, 1998, Nickie Dumke <DumkeMN at aol.com> described using a tortilla machine:
A source for the Vitantonio Tortilla Chef is:
King Arthur Flour Baker's Catalogue
P.O. Box 876
Norwich, VT 05055
(800) 827-6836
I have one and use it almost every day of the three "safe" weeks around EPD. It is much easier than rolling tortillas by hand and cooking them on the stove because some flours (not spelt) make such fragile tortillas that the less you have to handle them before they're solidly cooked, the better off you are. You can make the cassava and white sweet potato tortillas in "The EPD Patient's Cooking and Lifestyle Guide" using it, as well as some fairly uncommon, FRAGILE tortillas from "5 Years Without Food: The Food Allergy Survival Guide" (both my books) such as milo-arrowroot, yam-water chestnut, malanga-arrowroot, and chestnut. HOWEVER, this tortilla maker is coated with Teflon, so if you have problems with that, don't get it. And I do sometimes even have the real fragile ones like the yam-arrowroot tortillas split down the middle if I open the press too soon. Then I just scrape out the crumbs and have "cereal" instead of a tortilla! (Kind of like corn flakes). [Editor - another message that day provided a price of about $50 from this source.]
[Editor - On 11/24/98 it was suggested that the Vitantonio Tortilla Chef may no longer be available from the sources listed here due to supply and quality control issues. Call Vitantonio at 440-439-8651 if you have questions.]
On July 30, 2000, Jennifer Beason <jpbeason at usa.net> provided another tortilla machine source:
I finally found a tortilla maker. It is listed as a roti maker. The cost with shipping is $44.95. The website is: www.innoconcepts.com
On Sept 4, 2003, bugnut/Payton <bugnut at i-plus.net> provided Francis Simun info:
Here's their webpage where you can read all about them.
http://www.geocities.com/francis_simun/index.html (dead? 03/21/2011)
On Nov 21, 2003, Chris Wilson <cwilson379 at aol.com> provided Francis Simun info:
kgbm at ameritech.net writes: to anyone interested after asking for the phone number to this bakery thru the epd group and getting a huge response to the bakeries history I spoke with Francis himself today. He stated that he has not personally tested his breads to be gluten free however some are less likely to contain gluten than others. He admits that the air carries flour which can contaminate the "gluten-free" breads however he has been scrutinized by the FDA and passed with flying colors. He did admit that he has had some physicians ask him not to recommend his products to their patients so he will not advertise as being gluten-free. He was a very nice man, not pushy and understood my wanting a completely gluten free bread. I did not purchase anything from him and he was okay with that. That makes perfect sense. I have been to the bakery and it is a small one, and he also makes wheat-containing breads. It is almost impossible to remove all gluten cross-contamination when glutinous and gluten-free foods are prepared in proximity. Even some "gluten-free" cereals are made on the same production line as other cereals, because the manufacturers do not make enough of the gluten-free type to dedicate a separate production line. Simply cleaning the area is not enough to guarantee no contamination. For celiacs and other gluten-sensitive people, even tiny traces of gluten will cause a reaction. For example, Rice Dream rice milk has no gluten ingredients, but the rice is pressed through barley and the carton states it may contain .002% gluten. That is enough to make it unsafe for those on a gluten-free diet. One gf/cf mom I know referred to that as a "HUGE" amount of gluten.
I had forgotten about the FDA testing, but my EPD doctor told me about that when I first started EPD, stating that one of his competitors had accused him of using wheat. I have eaten the bagels with some shots and not others, and all of my shots have worked. The worst side effects I had were dry mouth and bloating, if I ate a lot of them. So I try not to make it my main "EPD diet" food. I would agree with the doctor who said not to eat them again if the shot didn't work. Often the best "test" of a product is just to see how you react when you eat it. I have known many parents who put their children on a gluten-free, casein-free diet and found just doing a trial of the diet to be more telling than the urinary peptide tests from the lab.
Btw, Francis Simun bagels are indeed dry and crumbly, if you don't take care to keep them as fresh and moist as possible. We microwave them in the plastic and eat them within a day after taking them out of the freezer. At the bakery they also keep them in the freezer until they ship or sell them. They wouldn't be appealing at all unless you are starving from being on the EPD diet. As for the taste and texture, I believe the difference is most likely due to the way Francis Simun grinds his flours (everything by hand, very finely) and the time-consuming kneading of the dough. They are edible, but still very heavy, and truly don't resemble wheat breads much.
On Oct 13, 2004, Dana <Dana_Sickler at msn.com> provided Francis Simun info:
Francis Simun Bakery now has a website. It is Francissimunbakery.com. I called today to order bagels for my next LDA shot. I don't know if they ship frozen bagels (I pick mine up) but the frozen ones are half the price of the fresh. I think they must freeze what is left over. I prefer to get mine frozen then I can get them a week or two in advance. Their phone message said you could order online but I never saw the link so I faxed my order in. But they do list all their products, etc.
5.14 What can you tell me about buffalo and exotic meat?
[Section Updated: 9/00]
In some cases, some doctors apparently allow the use of exotic meats during the EPD critical days. Discuss this with your doctor before stepping over the bounds of EPD restrictions. In the weeks around the critical 3 days, these sources might be useful for people who have sensitivities to more common foods.
On June 30, 1997, Vivian Jepperson <duke at itsnet.com> reported concerning buffalo meat:
If you have Fred Meyer chains in the area where you live...they do a promotion of Buffalo meat 3 or 4 times a year...here in Utah it runs $3.48 a lb. for ground Buffalo. I bought a bunch and froze it. I didn't think it was badly priced and when you only eat it on the 3 critical days...it goes a long way. Give them a call.
On June 30, 1997, Stan Rohrer <srohrer at scitexdpi.com> provided a source for Buffalo meat:
I drive down the street to Dorothy Lane Markets, an "upscale" grocery store in Dayton Ohio, and purchase it (cheaper than Ostrich at $15/lbs).
I just called the Oakwood store at 937-299-3561 and they quoted $4.99/lb for ground/patties and $6.99/lb for a roasts (both frozen). The meat department gentleman said they could ship UPS and with the summer heat a larger quantity would travel better as a frozen block. Of course UPS shipping adds to the end cost of your meat.
This is also the store where I buy rabbit. I like to shop a couple weeks in advance since they appear to stock monthly or so I think. I don't like to count on my luck two days before critical on these items.
They also have another store farther south in town at 937-434-1294. Rabbit and Buffalo available here as well. See http://www.dorothylane.com/ for an E-mail address <dlm at dorothylane.com> and you might inquire if you want more info.
Try also in full service health food stores in your area which sell fresh vegetables and special items. If they don't carry it they may know of a source.
On June 30, 1997, SCOTT VIRGINIA <scottv at spot.Colorado.EDU> commented on acquiring exotic meats:
Buffalo is pretty easy to get here in Colorado - they sell it in most of the grocery stores. Unfortunately, I can't tolerate it during the 3 day critical period. There is a mail order exotic meat company in Denver. They not only sell buffalo, but also elk, turtle, alligator, rattlesnake, rabbit, boar, pheasants, etc. I've bought from them. They bill it to my credit card and ship the meat to my door. It's not real cheap, but it can get you though the critical 3 days. Just make sure you ask for the real frozen meats. (They also sell jerkies and sausages, but these have flavorings and other ingredients in them.)
Dale's Exotic Game meats
1961 W. 64th Ave
Denver CO 80221
Phone (303) 657-9453
Fax (303) 657-1425
7am-3pm Mon.to Fri. (Mountain time)
On June 30, 1997, Lisa Smith <BrewerMom at aol.com> provided a source for Buffalo:
Never thought much about buffalo meat before and I plan to get an okay from my EPD doctor before pursuing it. However, I got a catalog in the mail today from Denver Buffalo Company. A beautiful catalog with all cuts of steaks, prime rib, tenderloin, pot roasts, "buffdogs" & "buffburger" (hahaha), even buffalo jerky.
Don't know how reasonable the prices are, but here are some: buffburger (16 - 5oz patties) $49.95, Top Sirloin (4 - 6oz. sirloins) $49.95, Filet Mignon (4 - 6oz. filets) $74.95 (gulp), Chopped steak (12 - 8oz. patties) $54.95.
Their phone # is 1-800-289-2833 (BUY-BUFF).
On July 14, 1997, Connie Van der Cook <Thorbvdc at aol.com> suggested a buffalo source:
I am pleased to give you the address of a source for wonderful and amazing buffalo meat in Mo. that you are looking for. Buffalo meat is low fat, loaded with protein and uses more calories to digest than you take in eating it. And it tastes good.
Sayersbrook Bison Ranch
P.O. Box 10
Potosi, Mo.
63664
1-888-4SAYERS
1-888-472-9377
And remember, if you are using the buffalo meat during EPD - Only use it for the EPD diet period. It is my reward!
On July 16, 1997, Alice <Vantor7 at aol.com> cautioned concerning buffalo purity:
I am having EPD shot #7 on Friday. I saw my Dr. today. During our discussion, the topic of buffalo meat came up and he said that Dr. Shrader said it is not permissible because the meat may not be pure buffalo. There has been cross-breeding with cattle in this industry because there was a shortage of buffalo.
On July 21, 1997, Vivian Jepperson <duke at itsnet.com> cautioned on buffalo use during the critical 3 days:
I thought I would pass this along. I just talked to Dr. Shrader and asked about Buffalo on the 3 critical days...he said NO!...the reason being that Buffalo interacts as would beef. Someone had asked him also about Ostrich and he is afraid of that also...interacting as chicken would...sorry...
On October 10, 1997, Stan Rohrer <stan.rohrer at scitexdpi.com> added:
I inquired again at my doctors office concerning buffalo use during the critical 3 days. My source says it's OK as long as it's "range" buffalo. I guess this means to avoid domesticated, farm raised, or cross-bread animals.
On January 28, 1998, Nickie Dumke <DumkeMN at aol.com> provided a source of exotic meats:
Dale's Exotic Game Meats (phone 800-BUY-WILD) has all kinds of things including the usual buffalo, venison, etc., but also things like kangaroo (it's great!), alligator, and rattlesnake (the last two I only eat at EPD time because I have to admit they're not my favorites and actually can give you a sore jaw from the amount of chewing they require). Dale's gives "allergy people" a 10% discount, so tell people to be sure to mention that when they order. Dale's is about 20 miles from me here in Colorado, but they ship all over the country, and their prices are low enough, especially with the discount, to make up for the shipping charges.
On September 12, 2000, Maria <mzanghi at brownwoodlaw.com> provided a source of exotic meats:
I just ordered buffalo meat and ostrich meat at good prices from Durham Meat Co. in San Jose, CA. Their # is 800 233-8742. The 25 lbs came in ice pack box and it was ok. You can call them if you wish because they have other wild meats.
5.15 Are there other sources of EPD diet foods, supplements, books, tests, and other items?
[Section Updated: 9/00]
Most of the foods on the approved list are available with only a little searching in most locations. Your doctors office likely knows of a few outlets that might be locally available to the doctors' office.
Some people have noted that immediately freezing or using the food items are a good idea on receipt. Many will not have preservatives (that's the reason for the special orders) and will go bad quickly.
Many of the EPD doctors sell the supplements or can suggest local outlets.
On Aug 30, 1996, MARTHA RALL <mrall at kumc.edu> commented on an EPD diet book:
Sometime ago, I purchased a copy of an EPD diet book from my dr.'s office. It's title is "The EPD Patient's Cooking and Lifestyle Guide", by Nicolette M. Dumke. It contains helpful practical hints for a patient preparing for EPD, even detailing a suggested schedule for the weeks preparing for the treatment, e.g. 1-2 weeks before shot: get a haircut, buy anti-fungal meds, etc. It has several recipes using EPD safe food (not that there is a lot to work with :-) and briefly explains the Very Mixed Diet.
There is an order form in the back for ordering additional copies of this book; its price is listed as $5.95, $1.50 shipping, with Colorado residents add 3.8% sales tax [Editor - call for current prices]. The order address is:
Allergy Adapt, Inc.
1877 Polk Avenue
Louisville, CO 80027
Phone (303) 666-8253
You might want to call to see if this price is still current. Ms. Dumke also offers other books, titled "Allergy Cooking with Ease", "More Allergy Cooking with Ease #1", "How to Cope with Food Allergies When You're Short on Time", and "Superfoods" . I have no knowledge or recommendation of these other books. [Editor: Quite a number of people have recommended these Nicolette M. Dumke books, especially the EPD Cookbook.]
On January 28, 1998, Nickie Dumke <DumkeMN at aol.com> provided info on her recent book:
5 Years Without Food: The Food Allergy Survival Guide.
In addition to about 500 recipes made with a much wider variety of ingredients than in my previous books, the book has medical information including a little about EPD and dysbiosis, which, as you know, is the most common reason for EPD failure. If people are interested in ONE book to help them through all of their food-related and dysbiosis-related EPD issues, this is it. [Editor: Purchase through Nickie's outlet, Allergy Adapt, Inc. listed above. Also is an excellent resource for non-EPD diets, rotation diets, food groupings for rotations, and food substitutions for allergen avoidance.]
Nickie Dumke also has a sister business connection which sells EPD related items. See http://www.food-allergy.org/oursister.html.
On 3/12/99, Sondra Lewis <canaryc at inav.net> commented on her book and newsletter:
Your health problems could be a result of an overgrowth of Candida albicans yeast [Candida Related Complex (CRC), a major cause of chronic illness] and/or food allergies. If so, an effective tool in dealing with these conditions is available to you-Allergy & Candida Cooking Made Easy [book] by Sondra K. Lewis.
She is also the editor of a quarterly newsletter, Canary Connect News (CCN). First issue was January-March 1995. Current issue is #17, January-March 1999. CCN covers a variety of issues, just to name a few-Healing "Leaky Gut(#13&14 as well as future #18)," Water-the importance regarding digestion and allergies (#15), Fibromyalgia (Current issue #17, Dental Mercury Toxicity (#11), Traveling Tips(#3,4,5,6), more Recipes, up-to-date information regarding allergy desensitization treatments (EPD, #10 & NAET #9) and anti-fungals to treat CRC, etc. as well as the reader favorite "Q&A" column. (Cost=$20/yr. Back issues are available, $6 ea or 4 for $20) She also operates a mail-order business-Canary Connect Publications-marketing products for those with CRC, MCS, and food allergies.
Canary Connect Publications
PO Box 5317
Coralville, IA 52241-0317
319 351-2317 FAX 319 354-8001
Email-canaryc at inav.net [Editor - change "at" to "@" to make the Email work.]
On 1/21/97, Susan Nordmark <athene at best.com> commented on flour and special foods:
Many of the "exotic" flours and other unusual foods [used in the EPD Cookbook] can be ordered from Karen Slimak at Special Foods. I have a very old flyer from SF--I'm hoping this is the correct address and phone:
Special Foods
9207 Shotgun Court
Springfield VA 22153
Phone (703) 644-0991
[Editor - Special Foods is reportedly run by a person with allergy problems and understands the needs of sensitive people. Reportedly a very good source. They have a Web site at: http://www.specialfoods.com (dead? 03/21/2011)]
On August 6, 1997, Sarah Bretz <sebhis at dante.lbl.gov> offered a possible source of EPD compatible flour:
I just wanted to mention that I have found stores that carry Asian foods to be a great resource for EPD flours. For those of you that live in S. California, there is a grocery store chain called Ranch 99 that caters to the Asian community. There is one in Kearny Mesa, Lemon Grove, and there may be others. They have sweet potato flour (14 oz. for $1), tapioca flour, potato flour, and rice flour (rice is not EPD but I tolerate it better than wheat).
On January 21, 1998, Vee <dieffend at concentric.net> offered flour sources:
I went to a Chinese grocer and got sweet potato flour - $1.29 for 160z/454g.
A West Indian store typically carries cassava flour, also known as Gari - $1.59 for 16 oz. I also bought tapioca flour from there .89c for 400 grams.
A West Indian Store is a good source for us, you can also get the Cassava root there, but due to my fatigue I find it hard to peel, so I get their frozen cassava instead. A bag is only $1.00 even. Just boil it, put Granose margarine on it and it's delicious.
I don't have yam flour, I assume the West Indian store might have it, but if you get all the above that will be enough.
The above are Canadian prices, but I expect the prices shouldn't vary too much.
BTW, the West Indian store had strong spice smells, so go before EPD or send someone.
On February 13, 1997, Tina Conrod <heal at ns.sympatico.ca>, the President of HEAL ,offered:
I carry many products for people with EI and allergies. Some are: Allergy masks (organic cotton with the following filters: cotton, coconut, wood and coal charcoals, also silk and 3m 9915 masks. A new product I have just brought on line is the personal air supply machine which you wear around your neck which filters the air you breath, these are working very well for some people but don't for all.
Ceramic masks for people on oxygen, tygon tubing. vitamin/supplements, Personal care products, cleaning products, books, air/water filtration systems, allergy vacuum with hepa filter, 100% unbleached cotton bedding, cotton pillows, barrier cloth mattress and pillow covers, S.A.D. lighting, full spectrum lighting, wood sealers/finishes, glues.
New Products for EPD: In Stock now Granose margarine price $19.99 Canadian, Simple Soap bar 75G is 1.59 and 150g is 2.49,Simple shampoo 7.99 and Granny's laundry liquid 8 0z 5.75 1Qt 14.99 and dishwashing liquid 8 oz 5.75 1Qt 14.99 . I have coming the plastic gloves. Vital Life EPD vitamins and Trace Mineral. I am also getting in the other foods that people will be needing for EPD.
A catalog is available for all but the newest additions to the stock.
HEAL (Tina Conrod-President)
3187 Highway #2, Fall River,
Nova Scotia ,B2T 1J5
Telephone/Fax is 902-860-HEAL(4325)
In Canada: 1-800-595-HEAL(4325)
E-mail address: heal at ns.sympatico.ca
I live .5KG from the new Environmental Clinic in Nova Scotia. I also rent out rooms to people who are being tested at the clinic and when they need a safe place to stay when on EPD. Also I have people from other provinces who are traveling who need a safer place to stay without carpets, perfumes, pets, smoking and no harsh chemicals being used. I got into this business because I also have EI and wanted to help people and I am also on the EPD shots at our clinic.
On Jun 17, 1996 MARTHA RALL <mrall at kumc.edu> suggests a source of supplies:
NEEDS (an allergy & EI supply store) has supplements, charcoal masks, and all sorts of stuff. My only complaint is a relatively steep shipping charge (min. $4.50), so I order several things at once, such as the Simple shampoo, and charcoal 3M masks. The folks there are friendly & helpful.
NEEDS (an allergy & EI supply store) reportedly carries the Granose margarine as of February 1997. They are also a source of the supplements.
N.E.E.D.S.
527 Charles Avenue 12A
Syracuse, New York 13209
800-634-1380
[Editor: see also http://www.needs4u.com/]
This reference appears to be a location mentioned by numerous people as their doctors source of some medications:
College Pharmacy
833 North Tejon Street
Colorado Springs, Colorado 80903
local phone: 634-4861
or: 1-800-888-9358
FAX: 1-800-556-5893
On Oct 23, 1998, Stan Rohrer <srohrer at scitexdpi.com> reported concerning compounded or unusual medications:
College Pharmacy has a Web Page at:
http://www.collegepharmacy.com/
Not a lot of detail but a reference for those of us who have had to get some of the "compounded" or hard to get prescriptions.
Along these same lines, these compounding pharmacies were suggested for a drug I couldn't get locally.
College 1-800-888-9358 or 719-262-0022
Abrams Royal 1-800-458-0804
Wellness 1-800-369-0302
[Editor: see also http://www.wellnesshealth.com/]
On 2/13/97, Nancy Armstrong <armstrong at ns.sympatico.ca> suggested a source of supplies:
I know of a good source for charcoal masks, specifically for the environmentally sensitive:
The American Environmental Health Store
Dallas, Texas
1-800-428-2343
They're open 8-4, Mon-Fri.
I bought a mask from them for my daughter several years ago (she was only 2 years old and they made one to fit her). At that time they had masks in cotton or silk, with elastics or with ties for people who can't tolerate elastic. They had several different kinds of charcoal, more than the usual coconut or wood carbons. They also carried a whole bunch of other good stuff (we bought a king-size cotton pillow and an excellent water filter :-)) I'm assuming that they still will carry all of the above, and probably much more. They may even carry more EPD stuff. Call them for a catalogue.
On September 18, 2000, Sandy <moehopper at YAHOO.COM> provided product resources for chemically sensitive people:
These are 2 websites that will give you lots of info. Both were compiled from the mcs groups.
http://www.geocities.com/HotSprings/3995/health/mcsresources.htm (dead? 03/21/2011)
hope this helps. I do have specific pages on various topics such as detergents, steam cleaners, etc. Let me know if you would like any of them, but most you will find in the 2nd source above.
On Feb 18, 1998, Nickie Dumke <DumkeMN at aol.com> suggested a test for mineral balance analysis:
If you are interested in finding out more about the hair analysis, etc., the lab is:
Analytical Research Lab.
8650 N. 22nd Avenue
Phoenix, AZ 85021
(602) 995-1581
The hair tests cost $55. I think they make more money on their supplements, but they were quite nice about helping me find others I could take when I told them what I was allergic to. They also have informational articles you can order.
On Mar 21, 1998, Jeffrey K. Lew <lew at cloud.atmos.Ucla.EDU> suggested a supplements source:
Also note that The Vitamin Shoppe carries the full line of Klaire Labs supplements under the Vital Life brand name. They're always 20% off list, with occasional 25% and 30% off in certain months. They also carry just about every other brand of nutritional supplements at discount, including Country Life, Source Naturals, Allergy Research/Nutricology (source of Gastromycin and another source of EPD vitamins and minerals).
I don't have their 800 number handy, but they now have online ordering and browsing: http://www.vitaminshoppe.com.
On June 24, 1998, Nicolette M Dumke <dumkemn at juno.com> provided books for fighting parasites:
Here are the names of the books you asked about:
Grapefruit Seed Extract
Allan Sachs, D.C., C.C.N.
ISBN 0-940795-17-5
Publisher's phone # - (707) 937-1825
$10.95
The Cure Is In The Cupboard (about Oregano)
Cass Ingram, D.O.
ISBN 0-911119-74-4
Publisher's phone # - (800) 243-5242
You can also get this book from Vitamin Shoppe for $13-14.
5.16 What can you tell me about manufacturers sources for the supplements?
[Section Updated: 5/97]
It is suggested that patients use the products recommended by their EPD doctor. The doctor knows the patients case and may have picked supplement sources which he believes will cause the least problems. The objective here is to obtain consistent high quality products with the least chance of encountering ingredients which will cause problems during EPD treatments. This means selecting a company source with high standards and high quality control. It also means selecting specific products which are EPD compatible. Choosing a product of your own "off the shelf" is asking for complications with the EPD treatments. However, buying the doctor selected product from a store of your choosing may offer price or availability benefits and should not be a problem.
On 2/2/97, Marge Jones <mastent at enaila.nidlink.com> was in a discussion concerning vitamins and said:
Parenthetically, I just read something Dr. Shrader wrote to the other EPD doctors stating that he prefers the Klaire Labs vitamins for his patients. He said, "(Klaire Labs) would not even consider an EPD formulation unless it was composed of the purest, most absorbable nutrients available anywhere today.
Needless to say, these ingredients are slightly more expensive than "tableted" forms and cheaper salts, but I've since been using them myself and for my patients, and there is no question of the quality and hypoallergenicity. Even my "worst" patients seem to tolerate them - a "first" for me. ... I will still use products from at least 15 other companies, because everybody has a product that seems to work "best" on most patients." I take it that the last sentence means he doesn't use Klaire's products exclusively. But he's pretty clear about his choice for EPD supplements. Great. Just after I purchased something else.
Some of the supplements in use (notably: Magnesium Citrate, MultiMin, Evening Primrose Oil) may be manufactured by:
Allergy Research Group
San Leandro, CA 94577-0489
See http://www.nutricology.com/ and http://www.nutricology.com/arg/argindex.htm (dead? 03/21/2011) (dead? 5/7/08) (dead? 04/07/03)
Some of the supplements in use (notably: Zinc Picolinate) may be manufactured by:
Cardiovascular Research, Ltd.
Concord, CA 94518
Some of the supplements in use (notably: Vitamin C-1000 from Tapioca) may be manufactured by:
Ecological Formulas
Concord, CA 94518
Some of the supplements in use (notably: Vitamin A) may be manufactured by:
Vitaline Corporation
Ashland, OR 97520
On May 28, 1998, Carol Ginsberg Brown <cgbrown at mediaone.net> suggested supplement source of:
Recently I looked into trying to eliminate all the excipients and binders in my supplements, even the "hypoallergenic" ones. My endocrinologist told me about a supplement company called
Pure Encapsulations
1-800-753-2277
As I understand it, they use gel caps only with no fillers and the caps themselves are vegetable-based. (There's no "EPD Formula" :( .)
They distribute to doctors but my endocrinologist, who isn't currently carrying their products, arranged for me to order directly from them (retail, of course :) ). [ Editor - also reportedly sold in NEEDS catalogue (800) 634-1380.]
On 8 June1999, Sondra Lewis <canaryc at inav.net> described her writings:
I, Sondra Lewis, wrote the cookbook, Allergy and Candida Cooking Made Easy-retail price = $29.95. The first printing was in Nov of 1996. I just reprinted the book with resource updates. I began shipping the 2nd printing in mid-May. [Editor- Sondra is also an editor for the Canary Connect News newsletter. For book purchases see below or check with your book store.]
For more info or to order contact:
Canary Connect Publications
A Division of SOBOLE, Inc.
PO Box 5317
Coralville, IA 52241-0317
PH 319 351-2317
FAX 319 354-8001
Email-canaryc@inav.net
Working on web site
5.17 What can you tell me about fish?
[Section Updated: 6/99]
Some doctors allow the use of fish during the EPD critical three days. Ask your doctor if this is an option.
On 30 Nov 1998, Sandy in W V <CNA00012 at MAIL.WVNET.EDU> said:
This afternoon, I asked Terry Jones, PA who handles EPD for Dr. Ward, about eating fish and salmon during the 3 critical days. She says that there are several key points to be considered for each patient **individually** before the doctor (or PA) gives the "ok" to eating fish for those days. Here is what she said.
1. Do you eat fish (or salmon) frequently--once per week or more? If so, then you should NOT eat it at all during the 3 critical days. Reason...foods eaten during those 3 days should be things which are not eaten frequently.
(Here's something I thought of after I hung up the phone...Wonder why white potatoes are included in the EPD diet since those are staples in many diets?)
2. White fish is considered a less allergenic food than salmon. If a patient has many food allergies, then the doctor probably would recommend the patient not eat fish at all.
3. Deep sea, cold water fish are thought to be less contaminated, so those are the types of fish to select for the 3 critical days.
4. **Fresh** fish is the only fish to be eaten. Reason...freezing increases the histamines in fish.
On December 02, 1998, Stan Rohrer <srohrer at SCITEXDPI.COM> commented on store fish:
You need to ask if the store received the fish frozen or fresh. A number of stores in my area (Ohio) receive some of their fish frozen and then thaw before they put it in the display case. [Editor - Frozen fish releases histamine no matter who does the freezing.]
On April 5, 1999, Christa <Slmadeh at aol.com > indicated:
I just spoke to Barb at Shrader's office and it IS OK to use fresh fish, cook, freeze and then eat at EPD time!!!
I asked because I had to call for something else, and it is for precisely the reason that I guessed--cooking stops the histamine release from the fish.
On June 9, 1999, Sondra Lewis <canaryc at inav.net> forwarded some advice she received from an unnamed list member:
I buy my fish fresh and cook it immediately. I lightly grease a pan with Granose and lay the filets out on it. Then I sprinkle some tapioca flour on the fish and dot each filet with a tiny bit of Granose. I bake the fish until it's done, divide into four portions and freeze for EPD time. Each day I am on the diet, I take out one portion of fish from the freezer and put it in a microwavable pot with some rhubarb (fresh or frozen) and a bit of filtered water. I zap it for a few minutes. I find the rhubarb adds a bit of tang to the fish - sort of like lemon would. I hope this idea works for you.
||||| Top EPD FAQ ||||| Allergies Home Page |||||
6.1 How about some success/disaster stories?
[Section Updated: 8/99]
On Sept 10, 1996: Maureen Rodgers <mrodgers at powerline.chspr.ubc.ca> responded to the question:
>Glad to hear you are doing so well -- please keep encouraging us that are struggling along! You said shot #14 -- how many months/years have you been on EPD?
I had shot #1 in February 1993, and wow, has it ever changed my life for the better! I remember during the earlier shots being in tears and feeling sorry for myself but too determined not to forge ahead. And I am glad I did!
On Sept 10, 1996, Jerry Straks <jstraks at switchboardmail.com> added:
I can relate to that! I had shot #1 in June 1994 and the final quarterly shot, #9, in June 1996. I don't remember any tears, but I do remember wondering shortly after #1, "What in the world have I done to myself? Things have now gotten so bad because I started EPD, if it does not work, I will REALLY, REALLY be in deep trouble!"
I spent a full year in that state. I, too, was determined to stick with EPD, despite well-meaning advice from friends to drop it and go with their favorite treatment. I, too, am glad I stayed with EPD! (I have written several times that if I were a few decades younger, I would be doing cartwheels and handsprings on the lawn!).
[Editor - Thanks for this report Jerry. Jerry is one who has been through "the valley of the shadow...".]
EPD Success Story from Marge Jones and her Mastering Food Allergies Home Page.
Stan Rohrer's Allergy Story and EPD Diary.
Nickie Dumke's allergy and EPD story and family history.
Does anyone have a disaster story to share for balance and critique?
6.2 What other Internet resources are available regarding EPD?
[Section Updated: 8/00]
Here are a few pointers which may be of interest. May not be a comprehensive list though.
American EPD Society. The "official" source of EPD information, doctors lists, and reference publications. Often not accessible.
Stan Rohrer's Allergy Page. A collection of EPD and other allergy and medical resources. A very good place to begin additional research of EPD. For researching EPD studies and published articles, see the section on General Medical References.
EPD Description provided by www.food-allergy.org. This is a food allergy resource site provided by Nickie Dumke, book author. Includes EPD references and gut dysbiosis information as well.
The Feingold Association includes references to EPD Research (dead? 03/21/2011) (dead? 5/7/08). See this site also for information on Dietary Connection to Better Behavior, Learning & Health, ADD/ADHD, Allergies, Asthma, Dyslexia, Hyperactivity, Autism, PDD Pervasive Developmental Delay, Hives, Rashes, Salicylates.
EPD Success Story from Marge Jones and her Mastering Food Allergies Home Page.
6.3 What other Internet resources are available regarding allergies?
[Section Updated: 12/99]
Here are a few items discussed on the mailing list and pointers which may be of interest. Certainly not a comprehensive list though.
Stan Rohrer's Allergy Page. A collection of EPD and other allergy and medical resources. A good place to begin additional research of EPD.
Drugs and Chemicals:
HealthTouch Online includes drug lookup and health information. The drug lookup returns info much like the sheets from the drug stores.
RxList - The Internet Drug Index includes drug lookup of technical info. Attempts to handle miss-spelled names.
Chemical Searching (includes information on drugs) from CambridgeSoft.
American Academy of Environmental Medicine (AAEM) includes a searchable referral database and allergy information from the view of Environmental Medicine practitioners. Provided by HealthWorld Online.
Allergy Internet Resources and Allergy Mailing List info and archives. Good starting point! (Alternate copy).
Yahoo! - Health:Diseases and Conditions:Allergies index.
ALLERGY Hot Lists at www.Mall-Net.com includes link lists to a number of related medical items.
Mastering Food Allergies Home Page from Marge Jones. Includes Wheat-Free resources, and Yeast Infection resources. Also has books and newsletters for sale.
www.food-allergy.org is a food allergy resource site provided by Nickie Dumke, book author. Includes EPD references and information as well.
Foundation for Integrated Medicine is a site associated with Dr. Leo Galland, MD. This site covers a number of aspects including gut related problems which may be related to allergy and which may cause failures in EPD treatments. For other references, search for "Galland" in the HealthWorld Search at HealthWorld.
Chronic Fatigue Syndrome (CFS):
Great Smokies Diagnostic Laboratory has information on Intestinal Permeability and Leaky Gut.
On Dec 16, 1996, Joan Marie Verba <verba001 at maroon.tc.umn.edu> included comments among other responses:
There's an anti-IgE drug undergoing further testing in the spring. Contact Tanox Biosystems (dead? 03/21/2011) (dead? 5/7/08) for further information.
The Cold Body Page includes info on body temperature as related to thyroid and allergy response.
Thyroid LISTSERV Discussion Group and Newsgroup.
Self Kinesiology describes use and miss-use of a possible muscle test approach which some people claim can detect allergies.
Amalgam Mercury Dental Fillings and Chelation Therapy:
Toxic Teeth, the debate over need for removal.
Amalgam-Related Illness FAQ. (dead? 03/21/2011)
Internet searches might look something like: mercury AND chelation AND (dpms OR dmsa OR dmas OR edta).
Clifford Consulting & Research provides testing services for compatible materials for the allergic person.
NAET is an acupuncture or acupressure treatment.
See also: Stan Rohrer's NAET References for more links. Mailing list comments are included here.
On 6/9/97, Karen Irmsher <irmsherk at lanecc.edu> provided a Nambrudripad pointer:
I know EPD works for most people, but it didn't for me, and maybe for some of the rest of you. I have no connection to this doctor. I can tell you her address though: Dr. Devi S. Nambudripad, 6714 Beach Blvd., Buena Park, CA 90621. Maybe you can call information to get a phone number. And maybe someone there could tell you someone in your locale where you could get treatment. [Editor: I've seen a phone number given as (714)523-2933 and a suggestion that the office could locate a practitioner in a particular area.]
On Oct 27, 1997, Sandy Garrett <hypnosis at terragon.com> provided a mailing list contact:
If anyone is interested in subscribing to the new [NAET] list, you can send an e-mail to: LISTSERV@MAELSTROM.STJOHNS.EDU
(in body of message type: subscribe NAET-L your name)
On Oct 28, 1997, Diane/Jim Bocchino <djbocch at WORLDNET.ATT.NET> provided NAET List pointers:
You might want to check out the NAET-L archives to read some of the things/experiences we have previously discussed about NAET and TAT:
HTTP://MAELSTROM.STJOHNS.EDU/ARCHIVES/NAET-L.HTML (dead? 03/21/2011) (dead? 5/7/08)
There are some info files on several topics (we plan to add to these) stored on the listserver. Send an email message to the listserver address:
LISTSERV@MAELSTROM.STJOHNS.EDU
with the command:
INDEX NAET-L
in the body of the message. You will receive a list of files and directions on how to retrieve the file. We have a list of NAET practitioners. Send the state (or country, if outside US) of interest to: NAET-L-REQUEST@MAELSTROM.STJOHNS.EDU
On Sept 26, 1997, <Bob_Reed at sil.org> provided NAET referrals:
You can call 1-714-523-0800 to request a list of NAET practitioners' names.
On July 2, 1997, A.C. Berger <Aceyberger at aol.com> provided access to the Yeast mailing list:
Anyone who's interested can join the yeast list by sending an e-mail to:
LISTSERV@PSUHMC.HMC.PSU.EDU
and typing in the body of the message:
SUBSCRIBE YEAST-L and then your name, without any brackets
You will receive a confirmation request to which you must respond within 48 hours. Once you've responded as instructed you will be sent a welcome letter and a list of commands you can use to request archive and data base information, but I'm not aware of a FAQ for this list.
On July 21, 1997, Barbara Frone <pfrone at Alaska.NET> suggested the alternative medical analysis method known as Iridology:
I recently went to a lady that reads the eyes (iridology). She has been doing this for 20 years and I was impressed at what she told me. I spent 2 1/2 hours with her, and to make a long story short, she told me that my large intestine has a lot of toxic waste that hasn't moved for years. My small intestine is filled with mucous; so much that the flaps can't close, which means that the toxic waste is leaking into the small intestines, which are causing a lot of my allergic reactions. She also said that I was filled with parasites, Candida, and possibly worms. I am also low on flora (the good yeast). She recommended for right now to be put on herbs that cleanse my system. My EPD doctor tells me that I can take them in between the EPD shots, and the herbs will probably help me get better quicker. I think it's like a week before and 3 weeks after EPD when you can't take herbs. I am going to start tomorrow. I just wanted to let you know this information. It might help someone else.
FDA, USA Food and Drug Administration. Includes info on investigations and studies (though not necessarily EPD).
Antibiotics To Treat Rheumatic Diseases discusses alternative treatment of rheumatoid arthritis, scleroderma, lupus, polymyositis, Reiter's Syndrome, psoriatic arthritis, ankylosing spondylitis, juvenile rheumatoid arthritis and other rheumatic diseases.
This Ear, Nose and Throat site provides info on pulsatile irrigation.
6.4 What other publications are available regarding EPD?
[Section Updated: 2/99]
The American EPD Society site provides some reference listings of published articles.
The 1996 Pink Book contains footnotes to medical journal articles related to EPD.
On Dec 18, 1996, Marge Jones <mastent at rand.nidlink.com> offered:
I have written the story of my EPD treatment for my own web site - http://www.nidlink.com/~mastent It is called "Mastering Food Allergies", and the home page offers these choices: Gameplan For Recovery, The Wheat-Free Page, EPD, Candida Infections, and The Resource Page (where visitors can register, and make comments). Also on The Resource Page is listed the books I've done and more to the point here, the two issues of Mastering Food Allergies newsletter devoted to EPD: July-August, 1993, #74 is an interview with Dr. Shrader that pretty much explains the basics of EPD therapy; November-December, 1995, #88 is an EPD update in which I interview both Dr. Shrader and McEwen, though McEwen does most of the answering. In #88 I ask Dr. McEwen specifically, "Why do some people get worse before they get better?" Of course, the answer involves many factors - too much to totally go into here. But unmasking is apparently a big part of it, as well as the condition of the gut. I think a few years ago even the doctors didn't fully appreciate how important it was to get that gut cleaned up and cleared of parasites, with Candida at least under control (the gut will never be sterile, and free of organisms - it's the OVERGROWTH that produces symptoms and makes people ill.) These two interview issues are still available through the web site mentioned above.
Those with allergic children may be interested in MFA #91 in which I interview the RN grandmother of the youngest child to start EPD (at that time). He was 10 months old, and didn't even have allergies until after an immunization shot. While dealing with the allergies, the parents refused further immunizations, a point to consider in highly allergic families.
[Editor - Marge Jones is a nurse and medical writer. Some resources, particularly the newsletters, are available at a modest cost.]
On Aug 28, 1997, Anna <Amollow at aol.com> pointed out this resource. Tapes of the EPD Society Meeting of July, 1997, Colorado Springs, are available for approximately $135. Ask about a patient discount. Other years, including more recent years, may be available also. The source and 1997 tape titles are:
Insta-Tapes
2615 N. 4th Street, #599 / PO Box 1351
Coeur d'Alene, ID 83814
Phone: 1-800-669-8273 (1-800-NOW-TAPE), or 208-667-0226
FAX: 208-667-6834
1. Introduction to Enzyme Potentiated Desensitization: E.P.D - History & Overview, Basic Mechanisms of Action, Antigen Mixes, Precautions - W.A Shrader Jr., MD & Len McEwen, MD.
2. The "Basics": The EPD Diet, Food Sources and Alternatives, Basic Patient Guidelines, Orientation, Record-Keeping, Billing Codes and other Practicalities - Ilene Bucholz, R.N.
3. Acceptable Testing for EPD Patients, Basic EPD Nutrients & Storage, EPD Dosage Regimens - W.A. Shrader Jr., MD.
4. General Responses to EPD, Bowel Preparation - Part 1: The Simple Patient with mild to moderate Dysbiosis (Candida) - W.A. Shrader Jr., MD.
5. Requirements to Use Simple & Complex EPD, The American EPD Society, AAEM, GLCCM & the IRB. IRB Data Collection - Kim Owen & Rick Wilkinson.
6. Part 1: Response Patterns to EPD: Phases, Reactions, Side Effects, Nutrition, Masking/Unmasking, Mgt of Diet, Very Mixed Diet, Crashes of EPD. - Len McEwen, MD.
7. Part 2: Response Patterns to EPD: Phases, Reactions, Side Effects, Nutrition, Masking/Unmasking, Mgt of Diet, Very Mixed Diet, Crashes of EPD. - Len McEwen, MD.
8. Proteus /Kiebslella: Patient Preparation, Autoimmune Disease, Pharmacology of EPD - Dr. Len McEwen, MD.
9. IM & IV Nutrient Therapy For EPD: Hormones & Other Treatments...Bowel Preparation Part Two: Gut Parasites, Yeast & Bacterial Dysbiosis - W.A. Shrader Jr., MD.
10. Database Pearls, Part 2: What Interferes with EPD & What To Do When It Fails - K. Owen & R. Wilkinson.
11. Part 1: Current EPD User's Input Session, Case Histories, Discussion of Complications.
12. Part 2: Current EPD User's Input Session, Case Histories, Discussion of Complications.
On Feb 2, 1999, Sondra Lewis <canaryc at inav.net> offered her newsletter:
Canary Connect News (CCN) is a quarterly 8-page newsletter for people who have Candida, food allergies, MCS, FM, etc. health challenges. Price = $20/yr. All back issues are available. Current issue is #16. I am a little behind on issue #17 which is on FM and hopefully an update of NAET allergy treatment which I reported on in Issue #9. Issue 13&14 is my most popular issues on healing the leaky gut. (Many have called these two issues a "prescription to gut healing.") The first issue (Jan-Mar 95) is complimentary by just asking. Since this first issue is a atypical (but nothing is typical with me), I will also send at random another sample issue (or for those preparing for their 1st shot, may wish to choose issue #10 on EPD). Just forward name and mailing address to me by email and I will respond ASAP. I also sell a few other products which I will send brochures upon request. I started the newsletter because I learned so much about healing myself during the process of writing my 400 page cookbook and resource guide. Less than two years after printing my first cookbook, I revised, updated, and expanded + saved 100 pages. That book is entitled Allergy & Candida Cooking Made Easy. Now that I have been sick 11 yrs. + (started out very sick, lived almost in a bubble) I have made my book, newsletter, & other products my home based business. So far not much for profit but very rewarding. My business can grow as I heal. I am praying that I can manage to have a web page before mid March. It will not be anything great like Nickie's and Marj's to start with but hopefully something. Also, I am praying that I have healed enough by the year 2000 that I can begin public speaking more. I have done 2 local talks so far; may do another one in late March in FL, I live in IA.
||||| Top EPD FAQ ||||| Allergies Home Page |||||
7.1 Masking/Unmasking.
[Section Updated: 9/97]
Masking, in it's simple definition, is an exposure to an allergen and seeing no symptoms in response. As we might expect, exposure to a very low level of allergen (food, inhalant, or chemical) would produce no response. An exposure to just the right amount would produce a significant response in symptoms in a person who was allergic. Interestingly, an exposure to a much larger amount can again produce no symptom response. This last, much larger exposure, is the case of immune system masking.
Note that the amounts of allergen for each of these response cases differs for each person and differs for each type of allergen in a given person. In other words, for example, a person may mask at a very small exposure of strawberry and erroneously think they are safe because no symptoms are noted, while most any level of exposure of tomato causes runny nose and hives. Another person may not be allergic to either of these. Another person may mask them both.
To determine the difference between a masked problem and no sensitivity becomes an issue since neither may produce symptoms. EPD does unmasking by moving the sensitivity point in the immune system. Otherwise, for test purposes without EPD, about the only way to completely unmask is total avoidance of the potential allergen until the immune system recovers from the overload. Then in some cases, such as eczema, there may be additional time required for necessary healing.
On May 8, 1997, Stan Rohrer <stan.rohrer at scitexdpi.com> provided his understanding of unmasking:
I got a boost out of shot #1. Since then #2, #3, and #4 have caused me problems about 3-4 weeks after the shot. I've still got my fingers crossed that a negative reaction still indicates that EPD will work in the end. It is significant that my doctor (and most) required a commitment for a minimum of 6 shots. Apparently about 20% of us get to ride the rough road through the valley before getting a glimpse of paradise. What we are may be going through is a period of "unmasking".
Here is the "Stan Rohrer" theory on "unmasking".
A graph of the masking theory might look something like this:
7 1 1 1 1 1 1
6 2
5 3
4
EPD treatment time advances left to right.
Feeling of well being is top to bottom (with best on top, symptoms show worse on bottom).
The numbers represent a relationship to the immune system sensitivity and reactions (symptoms):
7: very overwhelmed / not reactive
6: overwhelmed / somewhat reactive
5: somewhat overwhelmed / reactive
4: very sensitive / very reactive
3: sensitive / reactive
2: somewhat sensitive / somewhat reactive
1: not sensitive / not reactive.
So it boils down to this. At 4 we feel bad and are bad. To the right the noted symptoms are pretty easy to relate to the stimulus (environmental trigger). To the left, better and worse feeling is not so directly related to the actual environmental trigger. To the left the immune system is overwhelmed by the environmental trigger to the point that it gives up and doesn't produce a reaction. We are masking to the left. To the left is where we are likely having general problems without obvious cause, and can't pin down root sources of problems.
Now the problem is that we don't have a way of knowing where on this chart we begin. I suspect that as we age, or increase our allergenic exposure, our initial starting point may be slowly creeping to the left. Obviously if we were at #1 there would be no reason to embark on EPD so we must be somewhere to the left of #1. If we happen to be at #4 or to the right, things should improve as EPD treatment progresses. If we are among the unlucky and are to the left of #4, our comfort level worsens for a while as EPD does it's work on fixing the immune system, and later we see more favorable and direct results as observed by our symptoms. Starting on the left, and moving towards the right via treatment, albeit showing worse symptoms, is unmasking.
The next problem that is tough to define is how big of steps are made with each EPD shot. I chose arbitrary numbers for the chart but we don't know how many steps it takes to get from, say, #6 to #5. The requirement to sign up for a minimum six shots is probably partially based on getting from the left side of my chart to seeing positive results on the right side for most people.
For some additional theory discussion, see also: The rotation diet has served me well, what's wrong with it? (Top EPD FAQ).
7.2 Provocation/Neutralization.
[Section Updated: 9/97]
On Aug 20, 1997, Stan Rohrer <stan.rohrer at scitexdpi.com> commented on P/N:
P-N or P/N. Provocation/Neutralization. A technique to test allergies by intentionally making them happen and then making them go away to determine a sensitivity level of a specific allergen. I've had these done by sublingual (under the tongue) drops for foods and chemicals. They can be done for inhalants as well.
Basically the test puts some drops of a very dilute controlled allergen solution under the tongue. Note symptoms for 10 minutes. Try again with a stronger solution. Note symptoms for 10 minutes. Continue the cycle until symptoms are noted. Then go back down the strengths one at a time, again noting the symptoms for 10 minutes at each step. Where the symptoms disappear is a dose level that can be used in later treatment. In the course of an hour or two you can provoke and retract an allergy response - hence useful as a diagnostic procedure.
The later treatment is basically an intentional repeated exposure masking of symptoms by applying the dose level to "deactivate" your normal response. Using the dose level just below the onset of symptoms keeps you from experiencing the symptoms while still activating your system to the allergen. Outside exposures then do not produce symptoms since the system has been activated but to a non-symptom level.
The approach works for some people and not others. Some people find it helps if used once a day, others may require numerous applications of the dose under the tongue to keep the mask effective. Often used for cigarette smoke and things which can't be avoided in the persons environment where traditional allergy shots are not effective or available (foods and chemicals).
Note that this is masking - an intentional attempt to cover up a problem instead of fix it. EPD is an attempt to fix the problem, not cover it up.
With my screwed up system the nurse could always provoke a symptom during the test for just about anything. However, I could not back down to a no-symptom state. I was always stuck where made worse. Just another of my lot in allergy life. ;-)
I hope I have this all right.
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