Revision: 11/06/2002, Formatting: 5/24/2023. Portions and Collection (C) Copyright Stan Rohrer.
||||| Allergy Home Page |||||
Â
Sometimes it helps to get a glimpse of others people successes, struggles, and failures. Here is a collection of EPD Stories as collected in bits and pieces from the EPD Mailing List archives. Beginning the course of EPD treatment is not a decision to be made lightly as you will see. It requires not only commitment to the protocol, but also commitment to stick with the treatment even if the going is tough. Intentionally I did not collect "quick fix success stories", though they exist. If anything, these stories are likely weighted towards the problem cases since the mailing list discussions tend to involve problems and the discussion evolves around attempts to find resolutions. While reading these stories, be aware of the "rule of thumb" that says it takes up to 1 year for inhalant allergies to respond, 2 years for foods, and 3 years for chemicals. Â
Some entries have been edited in an attempt to reduce space but not alter the content. Links are provided to recent source messages for further (unedited) reference. Some links may no longer work if the message archive has already been cleared of the oldest massages to save space.
Section entries are generally in reverse chronological order (most recent first). People who have been reported multiple times will likely report at different stages of treatment. Note the date as it relates to EPD status.
Links to the original files may not work for older entries. The database became large enough that old list entries had to be deleted to keep within the limits of my file space on the server.
DISCLAIMER. The EPD information on this page 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 administration of the EPD technique, nor any member of the American EPD Society, 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 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.
MISC: Stories and tidbits from numerous sources.
MARGE JONES:Â A personal story.
JERRY STRAKS:Â A personal story.
JOE TOTH:Â A personal story.
______________________________________________
/~rohrers/allergy/epd_list/20667
To: epd at yahoogroups.com
From: Kathryn <flight1 at videotron.ca>
Date: Wed, 06 Nov 2002 08:49:47 -0500
Subject: [epd] EPDand inhalants
Hi everyone,
I thought I would put my experience on this to help some out. Before EPD, 23
months ago, I was unable to eat anything because I was allergic and
intolerant of other foods. I had gone through at least 35 anaphylactic
shocks, was in the ICU constantly because of my allergies especially to
inhalants. These could be from various perfumes, cleaners, deoderizers,
scents from popcorn, rice, oranges, etc. I would react to smoke from
fireplaces, and gas fireplaces. I had severe reactions to all phenols. I was
in my house for almost a year because I couldn't go out in public. Both my
family doctor and my allergist contemplated on putting me in a sterile
hospital ``bubble`` because they feared for my life. I refused to live that
way and I knew I had risks even doing the EPD, but I had to try it. I could
die anyways, just by any of the allergens.
Before starting EPD, I did the anti-candida protocol, plus I had ten weeks
of vitamin and minerals intravenous treatments.
We did the cup method for the first four times of ex-theta. I had
antibiotics, gut prep, plus a long list of other things. I drank vitamin
water ONLY during my whole EPD period. I did this for several EPD's. Then I
started eating baby foods called the Mere Poule which has no preservatives,
or anything artifical. I mixed twenty ingrediants together. I took one
tablespoon per hour to start letting my body get used to this. I did this
for another two EPDs. Then I was able to eat many foods with the exception
of rice and corn. I started eating just EMU or ostrich through the EPD time
and I still do that today after 11 shots.
I have my life back, I go out in public and have no problem. I now have my
own fireplace at home and have no problems. I can tolerate pretty well all
scents with the exception of a few perfumes, but it is FAR from where I was
two years ago. I haven't been hospitalized in over a year for anaphylaxis.
For me, that is a miracle.
I think it is very important in the way one prepares for an EPD , as well as
during the time and after EPD. I go to extremes to clean out my room and I
stay there the three critical days, NO EXCEPTIONS. I find many will get
tired of being so strict and may start to cut corners which can be vital and
may end up doing more harm than good. Drinking lots of water is essential.
It is well documented that if not enough water is taken, EPD will fail.
Hope this helps some,
Kathryn
______________________________________________
/~rohrers/allergy/epd_list/20558
To: <epd at yahoogroups.com>
From: "ixtabai" <ixtabai at earthlink.net>
Date: Fri, 1 Nov 2002 09:58:10 -0500
Subject: Re: [epd] Next shot.
Jacqueline & others who are discouraged,
It usually takes at least a year of shots (or 6 shots...whichever takes
longer) before you see dramatic results....or sometimes that long before you
see ANY positive results!!! The Pink Book (in the US) says this. That was
my experience and it seems to be the experience of many people who have been
on this list. (Note that many of the folks who got better, have left this
list, but their stories are in the archives.)
For me, I had slight improvement with shots 1 & 2, then with shot 3 I was
MUCH worse than I ever was...even before I started EPD. I was getting shots
every 2 months. With shot 3, about 4 days after my shot, I had SEVERE
asthma...so bad that I couldn't walk one-half block in town...so bad that I
had to go on Prednisone (a steroid)...so bad that about all I could do was
sit in a recliner-chair & watch TV and knit. I taught myself to knit during
this time because I needed something to do, other than watch TV! And,
sometimes knitting was too much activity! (ha! ha!)
The Prednisone caused my Rosacea (facial skin problem) to flare up like it
had never done....imagine a swollen face with a severe sunburn and mosquito
bites all over it. That's how my face felt...burning & itching all at once.
The cotton sheet on the bed made my face hurt if it touched my face!!! The
Rosacea & asthma lasted until I got shot 4 (almost 2 months). I was
miserable!!!
I was ready to quit EPD...but thanks to the kind folks on this list & their
success stories, I stayed with it. Their stories told of similar
experiences...temporary, small improvements, then getting worse and feeling
awful, then dramatic improvement after about a year (or 6 shots).
Then I had shot 4 and my health went back to where it was with shots 1 & 2.
Shot 4 lasted 4 months. With shot 5, I felt better yet. After shot 6 I
felt normal most of the time!!! Of course when I had an exposure to
something, I had a reaction, but it wasn't as bad a reaction as before EPD.
So, stick with it. But some things to check on are these....Are you getting
the right shot dose? Is it too low or too strong? Are all of the antigens
mixed into one injection...or do you get several injections? (Mixing the
antigens into one injection will result in a VERY, VERY low dose.) Is there
something that should be added to your shot? Are you doing a gut prep
before each shot? Is the gut prep killing off the "bad guys" in your gut
before the shot?
Hang in there & one of these days you'll wake up & feel like a new person!!!
ixtabai
______________________________________________
/~rohrers/allergy/epd_list/11463
To: epd at egroups.com
From: Cafrin at mail.com
Date: Tue, 28 Nov 2000 09:56:47 -0000
Subject: [epd] anaphaxis to shrimp
Just a tid-bit of good news - my husband no longer has anaphylactic
reactions to shrimp!! He has been doing EPD for 3 years. Any amount
of shrimp, or even sauce that had touched shrimp used to cause
anaphylaxis, but recently he ate some shrimp with no anaphylaxis at
all!! He did get so congested that he got a sinus infection, but
that's better than anaphylaxis!! Now he doesn't have to be quite so
paranoid at chinese food places (they always seem to try to slip
shrimp into something).
______________________________________________
/~rohrers/allergy/epd_list/11409
To: epd at egroups.com
From: Hamiltonia at AOL.COM
Date: Tue, 21 Nov 2000 09:24:41 EST
Subject: Re: [epd] Considering EPD
Kathryn--
I am mildly sensitive to most of what floats around in the air (e.g., pollen,
molds, animal dander, dust), moderately to severely sensitive to most major
chemicals, and moderately to severely allergic to about 40 foods, most of
which are very common in the American diet. Before beginning EPD in April
1999, I felt awful most of the time and, like you, experienced "brain fag."
I had numerous other symptoms as well.
I had a fairly severe reaction to the first shot, but even so experienced
relief from pollens even with the very first shot. Since then, my symptoms
have gotten progressively better from shot to shot. (I just had #10 last
Friday.) I'm in my 50s, so haven't experienced the rapid improvements that
many young people seem to experience. Nonetheless, there is no doubt about
it--EPD has greatly improved my quality of life. For example, in August 1998
I experienced such severe symptoms from ragweed and mold that I was taking a
24-hour antihistamine each day, using Nasalcrom, doing steam inhalation three
times a day, and using a pollen mask whenever I went out. I was also taking
traditional allergy shots once or twice a week. Even so, my symptoms became
so severe that my allergist gave me a shot of slow release cortisone to get
me through the end of ragweed season. By way of contrast, I got through this
most recent ragweed season without taking any medication at all, without
using steam inhalation, without using a mask, etc.! I was slightly congested
most mornings, but it cleared off within a few minutes after I got up.
As for foods, when EPD is working its best, I can eat a lot of foods that
cause severe problems either without difficulty or only with minor symptoms.
I'm still a long way from being able to eat as much of any food as I want--I
am careful to eat moderate servings and not fall into a pattern of repetitive
eating. Still, my food progress makes it possible for me to eat out and
travel more freely than I was able to when I was so sick. My chemical
problems are also greatly improved.
I have gotten worse only in two senses: First, I usually feel somewhat under
the weather for a couple of weeks after each shot, but except for the first
one this has never been enough of a problem for me to have to take time off
from work. Second, EPD has "unmasked" several foods that I didn't realize I
was allergic to. However, I feel that finding those foods is essential to
getting better.
So, I would encourage you to try EPD. Given the severity and complexity of
your problems, I would suggest that you anticipate rather slow progress, but
progress nonetheless. When I look back to the month before I started EPD, my
own progress has been dramatic. Back then, I felt bad most of the time; now
I feel good most of the time. That makes it well worth all the restrictions
and other hassles!
______________________________________________
/~rohrers/allergy/epd_list/10227
To: "EPD LIST" <epd at egroups.com>
From: "Geo. & Jeanne Brooks" <gbrooks at ncia.com>
Date: Sat, 24 Jun 2000 10:29:28 -0700
Subject: [epd] Leaving the List
My recovery has reached the point where I can offer little to the list and I
gain little from the list . For me EPD has worked, have been on it for
three years and can do just about everything again that matters.
I certainly can not give a blanket endorsement EPD for anyone else because
we are all unique in our situations.
I'll be unsubscribing in the next several days, my wife and I will be taking
a three month cruise aboard our boat in remote northern British Columbia
waters, something I couldn't have even thought about doing three years ago.
______________________________________________
/~rohrers/allergy/epd_list/10231
To: <epd at egroups.com>
From: "Geo. & Jeanne Brooks" <gbrooks at ncia.com>
Date: Sun, 25 Jun 2000 11:35:20 -0700
Subject: Re: [epd] Leaving the List
Ester & the List,
Thanks for all your well wishes. Thanks also for all the support and
sharing on the list.
I believe the turning point is an individual thing, it was about 2 to 2 1/2
years in my case. I started EPD in May 97. I had a severe exposure to
paint remover about 15 months after I started EPD and I believe it set me
back at least a year. I was never willing to stop working on my boat
during the entire period nor stop using it for shorter cruises. I believe
allergies to and continued exposure to chemicals used for boat maintenance
slowed the process even though I wore a respirator. Also exposure to diesel
fuel and exhaust no doubt slowed the process.
One significant event that I considered a turning point was the ability to
fly down to Fontana, CA in May 99 , stay in a regular motel room, eat
restaurant meals and attend a NASCAR stock car race including being in the
pits, and sitting in the stands with smokers all around us without any
special accommodation or ill effect was great.
Besides my doctor, my wife Jeanne's support were the most critical elements
in my recovery. I thought allot about my recovery from whatever weakness my
immune system had and did not spend any energy blaming others for my defect.
Lets see, in the last week I've had pizza, an ice cream cone, clam chowder,
store bought cookies, potato chips, regular bread, and restaurant ravioli.
Eating any one of these foods would have put me on the couch for a week
three years ago.
Again, every ones situation is different, I am retired and not having to
concern my self with employment surely was a help. I feel for those of you
who must work and battle this thing!
______________________________________________
/~rohrers/allergy/epd_list/10148
To: <epd at egroups.com>
From: "Barb" <barbmms at iland.net>
Date: Sun, 11 Jun 2000 18:47:33 -0700
Subject: Re: [epd] childen and epd
My son will be 15 in September. He will be getting his 5th shot June 23rd.
He has severe autism. He is nonverbal. He has many allergies . His first 4
shots were 8 weeks apart, and there will be 11 weeks since the 4th until the
5th. His allergies are doing much better. His stimming and behaviors get
alot better while the shots are working, and he can focus better with his
school work, or when directions are given to him, he can carry them through
much better. He is 9 weeks past right now, and this last week he has been
going up and down with frustration and agitation. His nose has a sore on
it, from rubbing it; however, it isn't as bad as it use to be all of the
time. Prior to the shots, he almost alway's had a big open bloody sore on
the top of his nose from rubbing it so hard, not the bottom , but the actual
skin on the top of his nose. He is also sneezing more, the humidity is
terrible out right now, so considering 9 weeks past and having symptoms but
not as bad as before, the shot is still working, it's working harder and his
body is working harder right now which is good. He hasn't had any Zyrtec
since after his 3rd shot (it may have been his 2nd, I could look it up),
which is the first of not having allergy medicines in about 3 years. As far
as food allergies, I can tell they are being helped from his behaviors and
stimming, chemical are better because he isn't drawn to things from the
other side of a store when we enter. We have even walked down aisles with
candles without him stopping with a halt and pulling my hand with all of his
might to inhale the chemicals from candles. Right now we would have to walk
clear around aisles like that to get to where we need to go, because he is
being drawn to things like that right now and these are very hard on him.
For instance we were in Wal-Mart this past week to get a prescription, and
something from the hygiene products or something really made him upset and
he was hard to control, and as I will say, upset others in the store as we
walked past them, because he had swinging hands etc. This is like an old
scenario of him.. Two weeks ago, we could and we did go to the same spot to
get a prescription and he did wonderful, and that was even 7 weeks post,
which I consider to be very good. Then we have environmental like mold,
dust, grass pollen, etc. Like I said he isn't beating his nose raw, that
say's so much to me. He is being extremely drawn to wood right now, and
this past week. He is alway's on a gf, cf, yf, sf, and more diet, so as far
as these areas being any better, I can't really tell you. He has never let
me know when anything hurts internally except for his ears, so I can't give
you any input on how any of this effects him internally, but I am sure that
these are helping or externally he wouldn't be doing better.
This was a long post, but they are without a doubt helping my son. He did
have very bad reactions after the 2nd shot, which was very hard on all of
us; after the first shot we didn't notice any differences at all, and there
have been improvements after the 3rd and 4th, plus like I said, we got to
extend the time this time.
______________________________________________
/~rohrers/allergy/epd_list/10047
To: <epd at egroups.com>
From: "Jan Trimble" <jtrimble at netins.net>
Date: Thu, 1 Jun 2000 18:30:11 -0500
Subject: Re: [epd] success stories anyone?
There was some improvement right away (1st shot) but didn't last long. Shots 2, 3 and 4 seemed to leave me either the same or maybe even worse but 5 was better but 6 was when I started thinking "hey, this is working." Prior to that I wasn't sure. Kept thinking I was always going to be sick and I was just having wishful thinking that this would get better. That's where this list came in. It kept me going and hoping. I am now okay in the chemical area (my problems were slight) and the grass, molds and dust (problems worse than chemical) but I am still working on the foods (my worst allergy area). I am just happy that I can finally eat my allergic foods without reaction between the shots and that I am also working on extending the shots.
______________________________________________
/~rohrers/allergy/epd_list/10044
To: <epd at egroups.com>
From: "Jan Trimble" <jtrimble at netins.net>
Date: Wed, 31 May 2000 15:22:08 -0500
Subject: Re: [epd] success stories anyone?
I am getting Shot 9 in July. I can eat everything (in small amounts) that I could not even have a trace of before. I now get hives when it is time for another shot. Compared to the bloating, upset stomach, diarreha, fibromyaligia, headaches, irritable bowel syndrome and heart palpatations plus a few other things, this is a major step toward recovery for me.
______________________________________________
/~rohrers/allergy/epd_list/10040
To: epd at egroups.com
From: Anita McCallister <amccallister at YAHOO.COM>
Date: Wed, 31 May 2000 07:45:24 -0700 (PDT)
Subject: Re: [epd] success stories anyone?
I can eat anything. And go 75% more place than I could 1 yr ago. I've been doing EPD for nearly 6 years.
______________________________________________
/~rohrers/allergy/epd_list/10038
To: epd at egroups.com
From: Robin N Johnson <ashburn6 at juno.com>
Date: Wed, 31 May 2000 09:10:25 -0400
Subject: Re: [epd] success stories anyone?
One year ago, my son was allergic to absolutely every food we tried. Now,
he is only allergic to wheat, eggs and milk products. Our thanks go to
God, who through EPD has made his life 100% better.
______________________________________________
/~rohrers/allergy/epd_list/9350
To: epd at onelist.com
Date: Mon, 27 Mar 2000 09:12:22 -0800
From: John & Ester Ford <mbiz at swbell.net>
Subject: [epd] Shot #7
From: John & Ester Ford <mbiz at swbell.net>
I just wanted to report back on Shot #7. I also hit that 1-year milestone. It's
only been 9 days, but so far this shot is working fabulous. The nurse told me
that 1-year was many times the turning point. I've also heard this on the list
here many times. I'm not so sure that I can eat other foods yet because I'm
still in the restrictive timeframe, but I have noticed such incredible energy and
sense of well-being. It's like built-in happiness. For a while, I was wondering
if I was much worse with EPD. I've almost always had some type of lift from the
shot, but there have been the ups and downs. The last shot lasted 5 weeks, and
I'm hoping this shot will last the full 8 weeks or longer.
______________________________________________
/~rohrers/allergy/epd_list/9231
To: <epd at onelist.com>
Date: Wed, 15 Mar 2000 21:58:37 -0800
From: "Andrine" <andrine at inetarena.com>
Subject: [epd] Depression Ups and Downs
From: "Andrine" <andrine at inetarena.com>
On Monday (5 days post shot) I was doing really well and was very happy with
the effects of Tofranil on my depressive episodes, as it seemed to alleviate
a large part of the sadness and hopelessness within an hour of taking it.
On Tuesday 6 days post) I crashed again, though not as bad as last Saturday
(3 days post). My doctor said I could take up to 150mg of Tofranil per day
so I intended to increase it to at least 100mg to see if it made a
difference, but I missed a dose and ended up with only 75mg again. I was
still better by the evening. This morning (7 days post) I crashed harder
than yesterday and am still not quite up to par. I'm going to take at least
another dose at bedtime. I'm disliking the dry mouth and bad taste that
comes with this medication, but I'm willing to suffer through with it
temporarily. I'm dragging myself to work and it seems to be a positive
influence on my psyche, focusing on other people's problems for an hour at a
time. I had regained my sense of smell while on the anti-fungals but it's
going away again as my congestion increases. I sure hope that all these
things are "good signs" and that this means it'll be worth it.
______________________________________________
/~rohrers/allergy/epd_list/9181
To: "epd" <epd at onelist.com>
Date: Sun, 12 Mar 2000 12:09:38 -0800
From: "Andrine" <andrine at inetarena.com>
Subject: [epd] depression better
From: "Andrine" <andrine at inetarena.com>
Thank you everyone who wrote encouraging words yesterday. I also went into
the archives and searched for other depression stories. Some were
encouraging and some were less so, but it was good to know that it's a
relatively common symptom.
I took tofranil and napped which seemed to take the edge off of things, but
as of last night I still felt pretty depressed. My partner was very
wonderful and supportive, reassuring and comforting. I recommended that he
remove the Darvon from my access for the time being.
This morning, I'm a little better. I didn't leap from bed with a happy cry
or anything, but I'm able to smile a little and don't feel like I'm a danger
to myself at the moment. I'll be continuing taking the Tofranil (25 mg
3x/day?) until I can contact my doctor tomorrow to see what he thinks. I
have to work on Tuesday, and I hope that it either takes my mind off myself,
or that I'm out of this funk. I'm a massage therapist, so I really need to
be able to focus and not be exuding negative energy. Sometimes just giving
massage makes me feel better emotionally, and it has been over week since
I've worked now, which may be contributing to my feeling down.
______________________________________________
/~rohrers/allergy/epd_list/9173
To: "epd" <epd at onelist.com>
Date: Sat, 11 Mar 2000 14:14:28 -0800
From: "Andrine" <andrine at inetarena.com>
Subject: [epd] First Shot
From: "Andrine" <andrine at inetarena.com>
My partner and I had our first shots last Wednesday. We prepared properly,
were very careful about cleaning up our environment and limiting exposure to
allergens. In fact, once I started taking the anti-fungals I felt better
even before the shot; my sense of smell returned significantly and I had
much greater energy. There was also the excitement of the whole new
procedure and the novelty of "camping out" in our special biosphere for 3
days that held some sort of bonding experience and thrill.
After our shot we both developed a sort of mild roving headache which seemed
to increase when we had rapid changes in blood pressure, like getting up too
fast or climbing the stairs even at a moderate pace. Otherwise there was a
certain amount of exhaustion that manifested in sleeping 9+ hours the first
night and feeling like we were unable to move upon waking, though once we
were up, it was fine. We also experienced a "slowness" and spaciness in
both thought and action. The day after the shot we both were ravenously
hungry and needed to eat about every 2 hours. I think these reactions are
pretty mild overall.
My partner has a difficult time living without Advil due to his physically
active profession and has experienced body aches. Our doctor prescribed
Talwin for headaches and, if that isn't sufficient, Darvon. He has taken
Talwin the past two night and took a Darvon last night as well to help him
get past the pain to sleep.
We came out of isolation yesterday and ate our normal allergic diet, which
seemed like feasting after days of lamb and yams. I don't think either of
us had a bad reaction to the foods that we ate yesterday. We took a ride in
the car and visited the grocery store yesterday too. I seemed to have a
minor reaction - a slight wheeze - when I encountered the dog area of our
house (both our dogs are non-shedding terriers who are confined to a tiled
hallway area off the kitchen). Next I found that opening my mail and
flipping through a catalog was making me feel asthmatic. I guess I'm
sensitive to printed matter, inks etc. This is not something I knew about
before I stopped taking my daily antihistamine a couple weeks ago, then I
seemed very sensitive to it.
Today I'm having a much more serious reaction. I feel the onset of a pretty
dark depression. I have a history of clinical depression which has in the
past been treated with various anti-depressants and St. John's Wort. In the
past 8-10 months, I have had no need for the medication, finding that if I
control my diet carefully, I do not have the problem. Suddenly and very
clearly, I feel I'm being overtaken by a cloud of hopelessness. I feel like
people are excluding me from their conversations and plans. I'm jealous of
other people's activities and time. I feel like I hate my life and that I
should just give up on everything. I don't care about my appearance. I
want to cry all the time. I feel like no one cares about me. Sadly, I know
that these are only symptoms of depression and yet I can't separate myself
from them. My depression does not exist in a vacuum. I am having a harder
and harder time delineating the feelings of depression from the reality of
my situation. And at this moment I KNOW this. I fear that I will soon be
unable to distinguish at all and I will descend into the familiar blackness
that I have known in the past. It feels like writing this is an exercise in
futility because no one can help and no amount of support and encouragement
will matter. Even asking the question "how long will this last?" seems
useless, because I know everyone is different and there's no way to tell.
Taking the Tofranil as an antihistamine will probably not help the
depression because of the low dose, but I'm afraid that a higher dose won't
work either, or may have side effects which will be as depressing as the
darkness itself. I'm at the stage where I both want to write "Help" and yet
know that no one can help.
On a more obvious level, I had an allergy attack in the car this morning on
the way to Shabbat services. It may have been something in the car, or in
the air or what I had for breakfast. After the sneezing fit, I developed an
immediate throbbing headache and have felt like hell since. I took some
Talwin and a Tofranil about an hour ago. I don't know if it's helping. I
don't expect it to. I don't know what to do. I want to go back to bed, but
have to take my daughter to class in an hour. Every effort is huge. I'm
deeply unhappy. I wish I knew that this is temporary. I wish I knew what
to do to make it go away. I wish I cared enough to do something about it.
______________________________________________
/~rohrers/allergy/epd_list/8849
To: "'epd at onelist.com'" <epd at onelist.com>
Date: Sun, 13 Feb 2000 13:25:23 -0600
From: "Kristina C. Detmer" <kdetmerh at mail.coin.missouri.edu>
Subject: RE: [epd]
From: "Kristina C. Detmer" <kdetmerh at mail.coin.missouri.edu>
Andrine--
Like the others on this list, I can't tell you how EPD will work in your
particular case, but I can tell you about my, and maybe that will provide
some encouragement.
Like you, I have no life-threatening allergies, but in my early 20's I
started pinpointing some specific food allergies. First caffeine, then
corn, then wheat, then other mysterious symptoms I couldn't source. Then a
few years later I went through about a year of fairly serious depression
and yeast infections. I thought at the time that both resulted from the
birth control pill I was on at the time, because they both cleared up when
I changed perscriptions, but the allergy testing I got a few years later
convinced me that the relationship was more linear--the pill was causing
the infections, and the yeast was causing the depression. Meanwhile, first
my sister and then my mother, who both have allergies much more severe than
mine, had started EPD and were having success with it. After a long talk
with my mom about the similarity of our patterns (she too had had
relatively mild allergies which started to increase in her early to
mid-20's) I decided to go on EPD as well.
When I started, I really thought of EPD as more preventative than anything
else. Instead, I've been amazed at the improvement it's brought to the
quality of my life. I've been on EPD just over 3 years (no idea how many
shots) and I think more clearly, function more normally, and eat with fewer
side effects than I ever have. Last night a friend and I spent several
hours in a smoky bar listening to some great live music--an activity that
would have been unthinkable before EPD because of the blazing headache that
I would have gotten. Now the only side effect is the need to wash the
smoke out of my hair before going off to bed.
The first shot, I had very little effect, but I did notice the 1-2 "clear
days" about 3 weeks after the shot. For about 36 hours it was as though
the sun had broken through fog, and then the fog decended again. The
second shot I went to Spain 10 days after the shot and proceeded to be
exposed to all kinds of bad-for-me food and air--no effect whatsoever.
It's been all uphill from there, however. Now the effects stretch from a
couple of days after the shot to just a few days before the next one.
Those 3 days in a bubble are worth it!!! If you're like many of us, you
won't realize how much better you can feel until you do. No, the diet
isn't great, but it's tolerable, especially if you're lucky enough, as I
am, not to have the severe food reactions described by some of the folks on
the list.
If your partners also undergo EPD it's an added boon. In the past few
months a couple good friends of mine have also started EPD and it's been
wonderful to have a "support group" in town. When our shots coincide it
means that we all have clean houses, so there's someplace we can safely
visit, and we eat lamb and venison stew together and talk about all the
foods we'll eat when the 3 days are up. We share recipes and rhubarb jam,
and we pool our orders for EPD-safe bagels from Francis Simun.
I hope this helps. Good luck with your shots. It's rough the first few
times, but after that it becomes routine and very much worth it for how
good you feel when they're working.
______________________________________________
/~rohrers/allergy/epd_list/8845
To: epd at onelist.com
Date: Sun, 13 Feb 2000 04:25:18 -0800 (PST)
From: Sandy Hughes <moehopper at yahoo.com>
Subject: Re: [epd] my success
From: Sandy Hughes <moehopper at yahoo.com>
Hi Andrine
You are right about the doctor answering some of your
questions, and the archives will document many of the
questions we have had. Everyone is different and
there is no way of predicting how you will react to
the treatments.
I'll tell you about my experiences. I was where you
are now but kept trying other things; I continued to
get worse and to react to more and more things.
I firmly believe if I had started sooner I wouldn't
have had so much ground to make up.
Shot #14 is coming up for me next month - I have been
on epd now for about 2 1/2 years. I have been making
slow upward progress. I don't have the drastic
improvement that some describe when the shot kicks in,
but a slowly improving trend. The treatments have
been 10-14 weeks apart until the last 2 and I was able
to go 5 l/2 and 4 1/2 months.
I get 3 shots now but started with 1. We added
different mixes as time went on. Discuss the options
and strengths with your doctor.
The biggest difference of now versus before shots -
much more energy, less fatigue and tiring; the
"spreading" stopped and now things that I am reacting
to are slowly being eliminated. (this was discussed
recently - the things I added to my list last seem to
be the ones that are being "cured" first.)
Although the chemicals are still bad for me, they
aren't as bad as before. If I do get exposed, my
reactions are not as severe or last as long.
Yes, the time of being a hermit is worth it. For a
short time you get more of a lease on life all the
rest of the time. The diet is the pits!!! I tried at
the beginning to eat and was OK for the first several
shots. Now food and their smells are so disgusting
that I have gone to glycerin and water for the 3 days.
Sometimes I will put rhubarb in hot water for a
drink.
My reactions to each shot have been different. The
first few I experienced overall tiredness and muscle
weakness, headaches, etc. More recent shots have had
only minor symptoms.
The treatment time and isolation is hard on the family
and pets - but remember it is only for a short time.
I feel it has been worth it for me. If I had to do it
again - I would have started it a year sooner!!!
This is a big decision. It is a big commitment on
your part. The responsibility is on the patient to
follow through with the do's and don'ts. Good luck
with whatever you decide.
______________________________________________
/~rohrers/allergy/epd_list/8672
To: epd at onelist.com
Date: Wed, 19 Jan 2000 09:23:55 -0500
From: Robin N Johnson <ashburn6 at juno.com>
Subject: Re: [epd] epd hope
From: Robin N Johnson <ashburn6 at juno.com>
My son has had 3 shots, and his success story is incredible. At 2 months
as a nursing infant, he developed severe eczema, and after several months
we determined he was allergic to everything he was getting through my
milk. We tried using every formula imaginable, but he was allergic to
those as well. After doing skin testing, we found that he was actually
allergic to everything tested for. I spent months finding alternative
meats, grains, etc, with no success. At this point we travelled to see
the doctor, then began shots 2 months later. The first 2 shots were of no
use, and were an incredible expenditure of time and energy (traveling)
and the worst moods I've ever seen my child in. I was ready to give up,
only continuing because my husband insisted! After the 3rd shot, his
eczema finally disappeared! He can now tolerate everything except wheat,
milk products, and tomato! I know this is a non-religious forum, but I
have to say in our case that I contribute our success not only to the
shots, but also to the continued prayers of our friends, and the grace of
our Lord.
I suggest that you stick with the shots, as the pink book recommends. It
may not work for everyone, but it is worth the effort.
Robin
______________________________________________
/~rohrers/allergy/epd_list/8220
From: "Kirk Bigelow" <kendall at iu.net>
To: <epd at onelist.com>
Date: Sun, 5 Dec 1999 23:39:03 -0500
Subject: RE: [epd] We're going!
From: "Kirk Bigelow" <kendall at iu.net>
Dave & Merry,
I can feel for you all. I was in a similar situation but I have had
allergies most of my life. I was able to live a somewhat normal life with
challenges. Then, I also developed the chemical sensitivities which to this
day believe I got from exposure at work. It was all I wanted to do was work
a full day come home and crash. Do that over and over. I would recover on
the weekends and go through the something during the week. I finally quit
my job and found EPD. Put my faith in GOD and I am now on shot 4 and work
again. It is great to have somewhat of a life again and able to pay ones
bills again. Not having to worry about the next month. I full believe that
the mainstream doctors do not have a real clue about difficult allergies
like food and chemical. My EPD doctor is the most impressive doctor I have
ever met and I have been to a few to say the least. I think you are headed
in the right direction. The soon you start the treatment the less time the
allergies have to settle in one system, the easier it is the EPD to correct
the problems. I can say that the first shot was the most effective shot for
me. It quickly brought my chemical sensitivities back to a livable leave,
but I am still careful. One word of advice, try not to over expose yourself
to strongly to your allergy, you need to give EPD sometime to work. Stay
tune to this listing, these people are a wonderful resource and support
group.
For the listing: Thanks everyone for your great word of support, It
really does help.
Kirk
______________________________________________
/~rohrers/allergy/epd_list/8141
From: "Sheppard" <cna00012 at mail.wvnet.edu>
To: "EPD list" <epd at onelist.com>
Date: Sun, 28 Nov 1999 12:37:11 -0500
Subject: Re: [epd] folic acid
From: "Sheppard" <cna00012 at mail.wvnet.edu>
The only EPD supplements I take are calcium, magnesium, zinc, Vit A, and the
prescription Vit D. Early in my treatment (shot 2 or 3), the folic acid
caused me to have breathing problems so I quit taking it & talked to my
EPD-PA. The other supplements have caused problems for me too so I stopped
using them. The EPD-PA agreed with my decision.
Breathing problems were one of the side effects listed on the folic acid
prescription information I received from the pharmacy. (can't find the form
now to list the other problems) If you are questioning the reactions you're
having, call a pharmacy and ask them to tell you what the side effects of
this dose of folic acid are.
Since shot #2 or #3, the only supplements I have taken are the ones listed
above. I consider myself an EPD success story and feel that my EPD
treatment was not hindered because I could not tolerate the other
supplements.
When I began EPD shots in April 1998, I was house-bound, not able to be out
in the world because of exposure to fragrances, laundry smells on peoples'
clothing, vehicle exhaust, smoke of any kind, cooking odors, and on & on...
I could not use any makeup or wear any clothing which contained a synthetic.
I wore organic cotton clothing at home and 100% cotton clothing when I went
out of the house---which might be only once every 2 or 3 weeks. Then, I
suffered from a headache for several days after my outing.
This month I had shot #9. I began feeling better periodically after shot #4
(Sept 1998). After shot #6 in March 1999, I felt "normal" most of the time &
extended the interval between shots to 3 months.
On Nov 1, I began working 5 days per week for a builder of custom homes.
(We also do remodeling and additions if anyone is interested. <grin>)
www.shelteralternatives.com
I drive an hour each way. I never thought I'd be able to work again! As a
result of my research on allergies, I'm their "Environmental Building
Specialist" ---along with being the Marketing Director & Receptionist.
This is the short version of my success story. Hope it eases your concern
about not being able to tolerate some of the supplements.
______________________________________________
/~rohrers/allergy/epd_list/8065
Date: Tue, 16 Nov 1999 08:32:23 -0800
From: martin marr <mmarr at accn.org>
To: epd at onelist.com
Subject: Re: [epd] Re: Allergic kid, age 7, not ADD, any others out there?
From: martin marr <mmarr at accn.org>
Hi Nancy,
My daughter sounds alot like
your son as far as progress. She is only on shot #3 on Dec. 3rd. She is doing
wonderful. She is not ADD, just very allergic to foods, environmental etc., etc.
She has always been prone to pneumonia and bronchitis. She would get a cold in the
morning and by evening she would have pneumonia etc. There was never a in between
time. Whenever she got sick she immediately would receive antibiotics because she
NEVER got better on her own. Well shot #2 she got a very bad cold about 10 days
before injection. And guess what? It went away all by itself. No ANTIBIOTICS!!!
YEAH! YEAH! She is doing fantastic, no more cough, running nose, asthma, no
shortness of breath, stomach aches, headaches, mood swings are all gone. She does
have these symptoms around the time the shot has worn off. But that is tolerable
compared to everyday like this. She does still get occasional mood swings when she
eats something she should not, especially Ketchup. Doesn't seem to matter if its a
little or a lot, we know with in 45 min to 1 hour she will be a terror. But hey
this is only shot #3 coming up. At some point she will be able to indulge those
french fries in ketchup!
Good Luck to you,
Tracy
______________________________________________
/~rohrers/allergy/epd_list/8064
From: DylanaJ at aol.com
Date: Mon, 15 Nov 1999 21:36:31 EST
To: epd at onelist.com
Subject: Re: [epd] Re: Allergic kid, age 7, not ADD, any others out there?
From: DylanaJ at aol.com
Yes, my son started EPD at about age 6..he is 8 now. He was allergic to many
foods including soy, wheat, corn..etc etc..he had asthma, chronic
rhinitis..etc ..and Tourette's Syndrome. The first few shots seemed to take
care of the Tourette's completely, but that wore off after about a year..but
he has no more asthma, no rhinitis, can eat some, not every day though..all
of his previous allergic foods with just minimal itching at night as a
result. I would say it has been very successful. We did a rotation diet for
about 3 months before starting EPD to calm his system down..that worked
wonders..
Good Luck!
Dylana
______________________________________________
/~rohrers/allergy/epd_list/8063
Date: Mon, 15 Nov 1999 21:38:41 -0500
From: Nancy Miller <millern at andrews.edu>
To: epd at onelist.com
Subject: Re: [epd] Re: Allergic kid, age 7, not ADD, any others out there?
From: Nancy Miller <millern at andrews.edu>
Hello,
My son has been getting EPD shots for about 3 years now. He's on about
shot 15 -- I've lost track. He is 14 years old now, has moderate food
allergies and allergic to many environmental things (grasses, weed,
trees, ragweed especially). He is now getting the shots about every 8
months and is doing very well. He used to get many colds every year,
cough all winter long and just generally didn't feel good. He can eat
anything now and not get sick and doesn't get very many colds anymore.
He is getting WELL!
He has responded to EPD much better than I have. I am still doing much
better than I was before EPD. I don't get colds or flu much anymore
either. I am getting my EPD shots four months apart. Haven't been able
to stretch it out any further. I've gotten about 16 or 17 shots during
the last 3-1/4 years.
Nancy
______________________________________________
/~rohrers/allergy/epd_list/8057
From: CWilson379 at aol.com
Date: Sun, 14 Nov 1999 22:00:16 EST
To: epd at onelist.com
Subject: Re: [epd]
From: CWilson379 at aol.com
In a message dated 11/13/99, ldmeans at earthlink.net writes:
<< My son (9 yrs old) just had his 7th shot yesterday. His 6th shot lasted
about 6 and a half weeks. Our Dr. thinks this next one should last the
whole two months and maybe longer and maybe skip a month. I'm pretty excited
that it is working so well and thought that it might be of some encouragement
to some of you.
He had asthma, ADHD and allergies like sneezing and itchy nose and those
kinds of things. Since he started the EPD shots he has not taken Ritalin.
He has just about cut out his inhaler completely the only time he needs it
is when the shot wears off. And he is not constantly picking at and itching
his nose anymore. That drove me crazy! >>
That is great, Dawn. My 16-year-old son has had 5 shots; he hasn't needed an
inhaler in months, he had two episodes of bronchitis last year but none since
shot #2; and he is taking significantly less psychiatric medication than
before. My 15-year-old son has had 4 shots; he is also taking less
medication, last year he was having puffy-eye allergic reactions that lasted
for days, and he has had none since EPD. I look forward to the time when
they will be medication-free, and I think that will happen within the next
year if not sooner.
Chris Wilson
______________________________________________
/~rohrers/allergy/epd_list/7871
Date: Wed, 20 Oct 1999 09:34:46 -0700
From: ccharles at foxinternet.net
To: EPD <epd at onelist.com>
Subject: [epd] (no subject)
From: ccharles at foxinternet.net
I just wanted to put something positive on here--in light of the recent
posts about EPD secrecy etc. I'm on critical day one of shot number
10--that's almost 2 years of this EPD game--I can't believe I've
survived this hell routine that long! Anyway, it's still a MAJOR pain
but I am seeing some positive results. When it is working I forget I
even had allergies and I have so much energy it's amazing. I can now
eat a lot of formerally "allergic" foods without any allergic response,
dust doesn't seem to bother me anymore but molds are still a problem at
times.
So even though I've only now barely reached the 3 month mark between
shots, I'm hopeful the time in between shots will start to increase
now. I also suspect that this list does not have too many people
writing who have "graduated" from EPD--I know I mostly use this list
when I have a problem or want to whine about the shot aftershocks.
______________________________________________
Â
/~rohrers/allergy/epd_list/7889
From: "Mike and Dinah Wehbie" <mdwehbie at ix.netcom.com>
To: <epd at onelist.com>
Date: Wed, 20 Oct 1999 21:55:08 -0400
Subject: Re: [epd] EPD doc list, etc.
From: "Mike and Dinah Wehbie" <mdwehbie at ix.netcom.com>
Thanks Ester for your positive statements. I'm also a believer in EPD.
I've had rheumatoid arthritis for 21 years (since age 27). I've had just
about every conventional drug, and I was always told that there was no cure
for r/a. The Dr's would say they "just didn't know what caused it, but that
much research was being done to find out." It is wonderful to be pain free
after so many years of suffering.
I'm having #5 on Monday, and I know it will be uphill from here on out.
Good to hear the testimonials!
______________________________________________
Â
/~rohrers/allergy/epd_list/7884
Date: Wed, 20 Oct 1999 19:11:18 -0500
From: John & Ester Ford <mbiz at swbell.net>
To: epd at onelist.com
Subject: Re: [epd] EPD doc list, etc.
From: John & Ester Ford <mbiz at swbell.net>
I think this list tends to sound "rah rah" because we are comprised of many
people who have tried everything with little or no results. We lose all
hope. Then by some miracle we discover EPD, and for once, we see real
results and progress, and before you know it we regain hope, something we
have long lost. When I've struggled so hard for most of my life to have some
quality of life, and I finally find some solution, you bet I'll be rah-rah to
anyone who wants to listen. I'm not cured yet and only on Shot #4, but I've
see more results in a short while of EPD to convince me that I'm on the road
to success in some way. I look forward to my treatments, because I know it
will be a step closer to even better quality of life. And if my rah-rah
attitude can help one person to dive in and feel better, then I've
accomplished something with my life. I only wish I had had a rah-rah
exposure to someone a few years sooner. I was a bit reluctant to dive in
myself, but it's just not that difficult to do EPD.
I'll get off my rah-rah soapbox now!
______________________________________________
Â
/~rohrers/allergy/epd_list/7348
Date: Thu, 19 Aug 1999 09:49:45 -0400
From: Elizabeth Stroud <stroud0718 at earthlink.net>
To: epd at onelist.com
Subject: Re: [epd] lupus and allergies?
From: Elizabeth Stroud <stroud0718 at earthlink.net>
Hi, Kelly. I have Lupus (SLE) and have had an incredible improvement in
symptoms after only two shots. I believe there is a strong connection between
allergies and autoimmune diseases, particularly food allergies. You also might
want to recommend the Great Smokies Diagnostic stool test- certain bacterias
(proteus klebsiella) are commonly found in autoimmune disease sufferers. I was
treated for this before I began EPD, but did not realize marked improvement
until I receive the shot for the bacteria.
In a nutshell: During 1998 I was hospitalized three times, had surgery once, had
so many infections that I was on antibiotics thirteen times. Since I began EPD
in January of this year, I have not had one illness (even with two small
children and being a teacher), no hospitalizations, stopped all Lupus meds, have
the highest energy levels I have had in fifteen years, and feel wonderful.
______________________________________________
/~rohrers/allergy/epd_list/7069
From: "John O Brock" <jb at johnbrock.com>
To: <epd at onelist.com>
Date: Sun, 18 Jul 1999 20:18:44 -0400
Subject: [epd] EPD's Results
From: "John O Brock" <jb at johnbrock.com>
Before I started EPD, I monitored the mail list and was both encouraged and
discouraged by the things I read. I decided to undertake EPD and my life
has changed dramatically for the better. In fact it worked so well, I
removed myself from the list because it seemed to be mostly for those with
problems. I thought it was time to re-subscribe and offer some words of
encouragement.
I had shot #10 last week and it has been two years since I started EPD. It
has been so effective that I have trouble remembering how bad I used to
feel. I have tremendous energy. I eat almost anything I want. My attitude
and outlook is very positive. My marriage is better because I'm no longer
out-of-touch. I can shake hands with people and sit beside women who wear
perfume. I can't say enough about how well EPD has worked for me.
I've had pretty good results from the beginning but I had some bad times
too. I had kooky things happen sometimes after a shot. I attribute some of
my success to
the fact I followed the diet, vitamin regimen and restrictions to the
letter, I had the support of my family and most importantly I had faith that
EPD would work.
So, for those who are having trouble, it may not fix all your problems and
it may not work immediately but there's an excellent chance a year or two
from now, you'll be well.
JB
______________________________________________
/~rohrers/allergy/epd_list/6967
Date: Mon, 05 Jul 1999 21:33:09 -0500
From: orear at centurion.flash.net
To: epd at onelist.com
Subject: Re: [epd] milk allergy
From: orear at centurion.flash.net
In answer to your question about EPD having negative effects on a child
with autism:
My nephew (with PDD) received EPD while he (unknowingly) had some
harmful intestinal bacteria. It took nearly a year to straighten out
his system after that. Of course, this could happen to anyone using
EPD, apart from the autism. Dr. Kotsanis is the dr. who handled his EPD.
If you would like to discuss his experience with my sister, e-mail me
for her e-mail address. She welcomes the opportunity to help other
families of autistic kids.
About the severe milk allergy:
We have some friends with a daughter with an anaphylactic allergy to
milk, also. They have not done EPD, though, for reasons of their own.
They avoid milk of any kind, but have had many close calls when she has
mistakenly been given things with milk as an ingedient by people outside
the family, and a nearly deadly reaction to another baby's bottle she
picked up in the church nursery.
Giving EPD to a three year old:
My daughter began EPD when she was 3 1/2 and has responded VERY
well---can eat ANYTHING now. She's gone over a year since her last epd
(had 12), and is now in need of it for a couple of foods and pollen.
Still, her reactions are much milder than when we started. I believe it
was easier starting that young, because we had complete control over
what she ate and her environment. I have a ten year old son, and it is
getting harder and harder to have that kind of control. At age three,
there really isn't any peer pressure, but the older they get, the more
it matters to them about being "different" and being denied what the
other kids are having. (But, I guess caring about peer pressure would
be great progress for an autisic kid, huh? ;-) )
--Diane O'Rear
______________________________________________
/~rohrers/allergy/epd_list/6593
Date: Mon, 17 May 1999 14:37:32 -0400
From: Elizabeth Stroud <stroud0718 at earthlink.net>
To: epd at onelist.com
Subject: Re: [epd] Shot #2
From: Elizabeth Stroud <stroud0718 at earthlink.net>
Ester, my daughter became sick with a high fever for four of her six shots, so
far. The fever came on the night of or the next day following her shot. One time
she became really sick with diarrhea and had to have an I.V. (really scary for a 2
yr. old) But, in spite of the fevers, her EPD has been extremely successful. Her
allergy symptoms have really gone away. I am thrilled to report that after our Dr.
visit this morning, both of my kids aren't scheduled for another shot. We are just
supposed to call when and if the symptoms return. I'm sorry you have felt so bad,
but I think it could be a positive sign.
______________________________________________
/~rohrers/allergy/epd_list/6576
From: Sondra Lewis <canaryc at inav.net>
To: "'epd at onelist.com'" <epd at onelist.com>
Date: Sun, 16 May 1999 13:02:24 -0500
Subject: Re: [epd] unsuccessful up to 3rd shot
From: Sondra Lewis <canaryc at inav.net>
Marta
It is so sad to hear of you going through all the prep, cost, etc. for 3 EPD shots and no success. I have been there and now re-experienced it. Others have mentioned these things but I want to repeat only to add my experience. My first 2 shots were unsuccessful as well as bad relapse with many of my systems, severe headaches after #1 and nasal problems mostly after #2. I then switched doctors. #3 was good but only lasted 3 weeks or so. Now my last 2 (#10&11) shots have been unsuccessful. Also, #8 was not great at first but it turned around to improve after I changed my air purifier filters in my home.
I am not sure what was/is all the causes but my second EPD physician suspected parasites (even though I was tested with Great Smokies before beginning shot #1), other abnormal bacteria, or mercury toxicity problem being the problems why #1&2 was so miserable for me. Retesting showed parasites (did several things to clear as well as heal gut and then retested) and mercury toxicity. I believe that you mentioned that you tested for parasites with Great Smokies. Marge mentioned a different lab. The correct name for that lab is Institute of Parasitic Diseases in AZ. To purchase a test kit contact: Urokeep, Inc. 602 545-9236. You will need to add a physician's name to the form in which the results are sent but you can order the kit yourself. The test is cheaper than Great Smokies test-I believe only $75. If your physician needs assistance with interpretation of results or ideas for treatment options he/she may contact Dr. Amin. If that contact info is not on the results, email me and I will send you contact information for Dr. Amin that I listed in my updated reprinted cookbook/resource guide which will be this week.
Regarding mercury, my EPD physician says that he will not allow a MCS patients to start EPD unless they have removed their mercury fillings as well as done the detox. I had removed the fillings within 14 months after MCS diagnosis but then (1990) one only used Vitamin C by IV after each shot as well as some pills. Now it is recommended to detox with also DMPS (IV) and DMSA (pills) as well as other pills including chlorella. I did 3 DMPS IV's and got very, very sick on the 3rd on so my doc abandoned it for just me using Chlorella between EPD shots. Now with #10&11 being unsuccessful, we did future testing which showed still a mercury (and other mineral) toxicity and mineral imbalance (particularly zinc and magnesium deficiency both of which are important for EPD effectiveness). I just completed one 3-day course of DMSA after a month of Chlorella. Now I am backing off from the detox to boost my mineral deficiencies. I even switched to a different brand of supplements in hopes of better absorption. At some point (at least 3 weeks from now) I will repeat the 3-day course of DMSA.
In the short Marta, if I was you, I would do a Doctor's Data multi-element analyses on whole blood, hair, and possibly urine. Also, I would do a Institute of Parasitic Diseases parasite test, Great Smokies Diagnostic Lab test for bacteria only, and the nutrient test that Marge mentioned in early April. I believe the test is called Comprehensive Nutrient Assessment test from SpectraCell Laboratories of Houston, TX. I believe their # is 800 227-5227 but I believe your doc needs to order the test kit. I talked with my physician regarding taking this test in April but the kit hasn't come yet. I guess is slipped through the cracks so I best call and remind them to send the kit. Of course now that I have done the mercury detox, it would be better to do a few weeks of boost before doing the test. Anyway I will be doing the test before my next EPD shot which I scheduled for July 23. (I cancelled my May 14 shot.) If results are deficient in zinc and magnesium I will postpone shot until these deficiencies are corrected. For more info from me see my email of 4/28, entitled RE: shot #10 which was my response to Charles depression question.
Hope all this is of help to you and others.
Sondra
______________________________________________
/~rohrers/allergy/epd_list/6505
Date: Mon, 10 May 1999 00:06:10 -0500
From: "Stephen O'Rear" <orear at centurion.flash.net>
To: epd at onelist.com
Subject: Re: [epd] reactions
From: "Stephen O'Rear" <orear at centurion.flash.net>
Are you assuming that the effectiveness of epd does not "kick in" until
after several years? I have read that a few patients can take a couple
of years to respond, but everyone I have come across has experienced at
least some level of clear improvment within the first few treatments.
You may be confusing the fact that some many patients improve to the
point that treatments are no longer necessary after a few years.
My children have such a dramatic improvement right at the three week
point (after epd), that it just can't be a coincidence. Also, the
isolation period is over long before the improvement kicks in, so we
can't attribute it to that. Eventually, the effectiveness does wear off
to some degree. However, no other treatment that we are aware of gives
an equal or better long term success rate. The fact that it wears off
does not mean it is not effective. In fact, for us, it serves as a
reminder of just how far we have come. I think most epd patients would
agree that the months of relief are definitely worth it, even if epd
must continue to be repeated. I'll offer you a parallel from
"conventional" medicine: I periodically get steroid injections in a
shoulder with bursitis (injured in a car accident). This brings total
relief from pain for awhile. The fact that it eventually wears off does
not mean that the injection was never effective!!!!)
Epd can be a "major cure-all" for any and all symptoms that are allergy
related. There are some symptoms that many people don't recognize can
be allergy symtoms. These might include depression, hyperactivity,
arthritis, headaches, etc. (I say CAN BE, they are not necessarily
ALWAYS caused by allergies.) Epd, however, has never claimed to cure
anything but allergy related symptoms. Many people do experience
greater health overall, though, because they become less prone to
infections once their bodies are healthier.
My children have had 12 and 16 epd treatments. My children previously
had severe symptoms of all body systems (digestive, respiratory, rashes,
headaches, hyperactivity) that conventionl medicine did little to
relieve. They were clinically diagnosed allergic to 39 and 16 foods, and
numerous inhalants, plus one child was sensitive to a few chemicals.
Now they can eat ANYTHING!! My son (the one who was more allergic and
chemically sensitive) has to watch quantities of a couple of
ingredients. This has been life changing for both children, and for our
family as a whole!! When epd wears off they experience a return of some
symptoms, but to a far lesser degree of intensity.
Epd is not for everyone. Those with just a few sensitivies or mild
symptoms may find that the treatment is harder to deal with than the
symptoms. For our family however, the short term pain has been worth the
long term gain!
______________________________________________
/~rohrers/allergy/epd_list/6488
From: "Remedio" <remedio at bee.net>
To: <tina.jet at us.pwcglobal.com>
Cc: "epd responses/mail list" <epd at onelist.com>
Date: Sun, 9 May 1999 13:55:54 -0700
Subject: [epd] EPD for preschooler
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I have done EPD for my now 5 year old son with tremendous success. =
During EPD restrictions, I pack all snacks and alert his nursery school =
teachers as to his restricted diet. They are VERY GOOD about it. I =
also prepared a typed summary on the wordprocessor of all EPD-related =
restrictions with a diet reminder to only eat foods which I pack for him =
and we have had no problems. My son originally could not eat eggs =
(white or yolk), corn, soy, cow's milk, yeast, chicken, peanuts, any =
red/orange fruit/vegetable (phenol allergy), melons/apples/bananas as =
cross-allergens, etc, etc.plus allergies to =
mold/dust/trees/grass/pollens/animals/hay/paint, just to name a few, as =
well as chemical sensitivities to many things. His first three shots =
were two months apart, each with some improvement and some new foods =
tolerated. At shot #4, we extended to 4 months with additional gains. =
We are now eight months post-shot #5, and symptoms have not returned =
despite **unrestricted** diet and activity :-). We definitely feel it =
is worth the inconvenience. During EPD, we also allow unlimited TV as =
well as the day before restrictions, go to the video store and rent many =
movies for kids. You can make popsicles If you heat fructose and =
bottled water, then cool in popsicle molds. Also consider the sweet =
potato baby food (I use organic with just sweet potato and water) as a =
dessert or breakfast item. It is tricky in the beginning, but then =
becomes second nature and is definitely worth the effort. The kids =
often respond so quickly and it affects their lifetimes! Also, diet =
control is easier now than when they get older, and it is essentially =
not necessary anymore (except EPD times, which are much less frequent). =
Feel free to contact me directly if you have any questions, and good =
luck! Terri remedio at bee.net
______________________________________________
/~rohrers/allergy/epd_list/6200
Date: Fri, 9 Apr 1999 21:07:33 -0700 (PDT)
To: epd at onelist.com
From: Stan and Marge <mastent at nidlink.com>
Subject: [epd] Re: Digest Number 89
From: Stan and Marge <mastent at nidlink.com>
Stacey - I do not have an autistic child. But I have attended EPD doc
training sessions (as a journalist) for the first few years. I remember a
discussion in which the presenting doc said so many autistic children have
long histories of ear and other infections, thus a long history of
antibiotics - thus a long history of candida yeast overgrowth. Treat that
aggressively, and your patient's problems (the clinical presenting symptoms)
can be cut by half.
I think whoever you are going to go to for the EPD should be able to guide
you in addressing candida and other forms of gut dysbiosis, as well as
identify his food and seasonal allergies - THEN SEE HOW YOUR SON IS, THEN
DECIDE WHETHER TO GO ON TO EPD OR NOT. This is a concept too few of us
do/did. But I have read more than once, that Leo Galland, MD, in NYC (an
international expert on gut dysbiosis) has stated that when would-be EPD
patients were properly and thoroughly prepped BEFORE undertaking EPD, fully
75% of them no longer needed it!!! This is one reason why it is SOOOO
important to work with your doc and to be patient about the possible months
of prep tests and treatment before entering into EPD. All too often, we
patients walk into the docs office having decided on EPD, and then pressure
the doc to jump right into it. Supposedly, we should go to the doc with an
open mind, asking his recommendations in view of the history and what he
finds upon examination.
However, just to clarify my position, I would NEVER go to the doc and just
say "Yes, doctor" to whatever he/she says. In my view, in that first visit
the doctor is interviewing with you for a job! (You came of your own free
will, and always have the option of walking away from him and never
returning.) But if you think he sounds logical and truly interested, then
you may decide to HIRE HIM AS YOUR COACH. You should demand the necessary
information to fully understand whatever pathology he identifies, plus
whatever treatment modalities he suggests. And there is nothing wrong with
postponing a decision by saying, "I need to review this information first so
I can make an informed decision."
Thus you may go to an EPD doc for evaluation and the extensive EPD "prep" -
and still withhold judgment as to whether you want that therapy for your son.
EPD meetings are full of success stories that blew the doctor's mind. And I
have heard a fair number about autistics improving dramatically, even to
include better socialization skills and other less clinical, possibly
subjective, markers. But if the mom and family notice many positive
changes, and they are all happy, and the patient is functioning better and
seems happier, too, that's what counts!
Good luck in whatever you decide to do!
Marge
______________________________________________
/~rohrers/allergy/epd_list/5655
From: "Remedio" <remedio at bee.net>
To: <kellypost at earthlink.net>
Cc: "epd responses/mail list" <epd at onelist.com>
Date: Fri, 29 Jan 1999 13:45:27 -0800
Subject: [epd] EPD for kids
From: "Remedio" <remedio at bee.net>
Hi Kelly. I am the mother of a 5 yr old boy. We started EPD about a
year ago for food allergies to cow's milk, soy, yeast, corn, eggs,
chicken, peanuts to name a few, as well as environmental allergies to
mold, grass, trees (many varieties), dust, cats/dogs/horses,
paint/carpets/fragrances, etc. My son was tested as a one-year old at
an allergist recommended by my physician. We tried shots and drops to
no avail. My son's skin remained severely eczematic (actually all
scabbed or purplish/reddened) and his behavior hyperactive despite
rigid dietary control. The environmental allergies also significantly
affected his lifestyle. We have now had five EPD shots with outstanding
success! He has returned to full diet and he is no longer "triggered"
by environmental or food sensitivities. His skin is essentially
completely cleared up, except for some thickening in the hands. His
behavior is much calmer, and he loves being "normal", ie-no visible
wounds or discolorations, eating the food and cake at birthday parties,
not having separate snacks in nursery school or friend's houses, etc.
My doctor said kids succeed much faster than adults, and we are already
doing EPD only every six months! He really doesn't mind the EPD
restrictions-he considers it "special time". If you have any questions,
or choose to do it and want any hints for kids, feel free to contact me
privately. Good luck with your decision. It is a definite commitment,
but then so is dietary control with allergic kids! Terri
remedio at bee.net
______________________________________________
/~rohrers/allergy/epd_list/5652
Date: Thu, 28 Jan 1999 20:18:25 -0800 (PST)
To: epd at onelist.com
From: Stan and Marge <mastent at nidlink.com>
Subject: [epd] EPD vs P/N for kids (and myself)
From: Stan and Marge <mastent at nidlink.com>
Kelly - What you describe is a classic case in which the patient has studied
and learned what it takes to relieve symptoms - follows this pretty closely,
so can honestly say "we're pretty healthy". In other words, you've learned
to be an exemplery (what I call "professional") patient!!! Nothing wrong
with that if that's what you choose, but at least recognize it for what it
is. While you are under very good control - a tribute to your diligence -
you are probably not any less allergic to your triggers.
I was into P/N therapy for many years, about 15 I'd guess. My upper arms
were always sore from the extensive testing and re-testing. My "end points"
kept changing, and I would notice a red ring around the injection site - a
sign I had to go back in and go through it all again. Given a choice
between drops 3 or 4 x/day and twice weekly shots, I chose the shots. At
the time I was traveling a lot. And it's kind of a catch 22 with the drops.
You need them more often, usually in the middle of the day, yet if they are
made up without preservatives (as they should be) they need to be
refrigerated. The shots also need to be kept cool, but I could pack them in
ice water in a hotel ice bucket, wrap the whole thing in towels so it would
stay cool all day, and change the ice only morning and night. Aand when a
shot was due, I took it in the privacy of my own room. The good news about
it was that the therapy DID keep me free of my symptoms . . . so I could
survive until something better came along. For me, this was EPD.
EPD can be a "rough ride" for some, to quote Dr. McEwen, who developed the
therapy. Although no one will promise or guarantee anything (in ANY kind of
therapy) I think those with a strong chemical problem have a rougher ride
than the pure food/inhalant allergies. But the leading docs still say very
positive things about it even for them. I also think (personal opinion
only) that those of us with quite long histories of allergies have a longer
road to travel than others who may have only become allergic in past few
years. (I had allergies, pretty much untreated until the P/N therapy
mentioned above, for HALF A CENTURY!) So I'm guessing that EPD would be
easier on children, who don't have that long history - and sooner is better
- you have control of their diet now in a way you don't have after they
start school.
Now, in my 6th year of EPD, I only go in once a year - but when I need it, I
need it, so I know I'm not "there" yet. Still, for most of the calendar
year I live a "normal" life - whatever that is. And there is a great
difference in my quality of life, too much to go into. But one very
significant example of being better is that I require about 2 hours/day less
sleep to be comfortable and resonably alert, with pretty fair energy for
someone my age.
But as you know if you've been aboard very long, EPD may not be for
everyone. It is a personal decision. If you decide to go for it, I expect
you'll find tips and support via this list to help relieve your anxieties
and answer your questions.
Good luck, whichever road you choose!
Marge
______________________________________________
/~rohrers/allergy/epd_list/5651
From: "Erin and Dave Oehler" <Oehler at msc.net>
To: <epd at onelist.com>
Date: Thu, 28 Jan 1999 21:44:25 -0600
Subject: [epd] Re: Choosing EPD vs P/N for kids (and myself)
From: "Erin and Dave Oehler" <Oehler at msc.net>
Kelly,
I'll just let you know what led me to get EPD for my daughter and me. I
have known since I was 4 that I have allergies - animals, dust,
grass........ When I was in high school, my mom read an article written by
my allergist (whom I hadn't seen for years) about the mood aspects of food
allergies - she hauled me in and told him I was a real - I believe "bitch"
was her exact word - especially around my period. He took me off corn and
milk - and my mom said I got better. I was 14 - she couldn't convince me of
that.
Anyway, very dear friends of mine had been struggling with their oldest
boy's behavior problems for ever. They had rotated until they were dizzy
and were at their wits end - scheduled an appointment with a neurologist and
Dr. Stayton the allergist who does EPD. They were amazed during testing
(p/n) at what happened to their son - behavior-wise. Their whole family
ended up on EPD - the oldest son was severe enough that it was really the
only choice (probably would be diagnosed with turrets). They had been doing
it for about 3 years when I finally hit rock bottom and decided to go. In
the meantime, several other families I know went and started EPD - all with
great success.
When I had the p/n tests it was astounding. I had some "typical" allergies.
But the mood problems were what was killing me. I was either depressed and
contemplating walking in front of a truck or I was screaming at my kids. I
felt fairly "healthy." But everything from dustmites to wheat and
progesterone sent me on a rollercoaster of out of control emotions (during
the testing session - outside of this I was unaware of any specific thing
setting me off). I did the neutralization shots for a while, but my levels
kept shifting and then I'd have to retest, etc. After feeling better, I was
able to see that the same thing was happening with my middle daughter -
extreme rage, extreme goofiness, extreme everything. My other two
daughters, on the other hand, also have very mild allergies, but they are
not doing EPD. I guess I feel it's not severe enough to affect their (or
my) lifestyle. Olivia and I have been doing EPD since Sept., 1997 - we're
going for our 8th shots in Feb. We'll have gone 4 months since our last
one! For us it was worth it. I still battle headaches - but not as often
and usually not as severe. My moods are much, much, much more stable - and
no anitidepressants! She is calm, rational, sweet and so much happier -
and eats like everyone else. Yes, for us it was worth it.
If you would like to talk more privately, just let me know.
Erin
______________________________________________
/~rohrers/allergy/epd_list/5292
Date: Mon, 7 Dec 1998 10:02:35 -0600
From: Phil Elliott <elliott at msa18156.brooks.af.mil>
Subject: Re: [EPD] steroids vs. EPD
To: EPDSUPPORT at WVNVM.WVNET.EDU
Some answers....
> From: Stan and Marge <mastent at nidlink.com>
> Subject: Re: [EPD] steroids vs. EPD
> >
> >I have some questions for the group:
> >
> >1. Does anyone have opinions/experience with steroid inhalers, i.e.,
> >how well they work, their side effects, or their leading to increased
> >sensitivity when use is stopped?
I used them for the last 12 years (prior to EPD), in my opinion they
allowed my asthma to progressively get worse and just "band aided" the
problem. Prior to going on EPD I had to go "cold turkey" for 3 weeks
without the inhalers - thankfully it was during a particularly clean
time for my local environment. During that time I had incredible feelings
of thousands of razor sharp nails going up my back; enough to wake me
up at night and enough so to make me come out of my chair during the day.
I'm pretty certain those were the result of the detox of the steriods
and antihistamines. The feeling was so intense I almost freaked out the
first time it happened.
> >
> >2. Has anyone else tried EPD to treat airborne allergies? Was is
> >successful? Did it lead to a reduction of asthmatic syptoms? Is this
> >type of allergy one that has a relatively good or bad success rate with
> >EPD?
I've been on EPD for over a year. The first day after my first shot
made me feel like I had gotten back 20 years of my life. ;)
>
> Inhalants were my worst enemy. Just brought me to my knees. Had to wear a
> mask during hay fever season in Illinois. EPD has been great for relieving
> my symptoms, which did not include asthma.
I got to the point of requiring an oxygen tank and had chronic bronchial
infections and sinus infections. Molds were (are?) my worst enemy. I
went from "regular" anti-biotics to sulfa and near the end was using
the same type they give heart transplant patients and was told I was
on the end of the strength chart (nothing after that would help me).
> >
> >3. Anyone have experience with airborne allergies being exacerbated by
> >food allergies? I don't have any that I know of, but have been advised
> >that food allergies (e.g. dairy) can lead to increased sensitivity to
> >other allergens.
> >
I have noticed that I am now having some problems with fish (especially
salmon) that I've never had before. I eat salmon and 10 minutes later
it goes right through me.
> have food, inhalant, and chemical allergies or sensitivities. However,
> (here's a generalization) when allergies in one category go untreated for
> long years, they tend to "spread" to the other categories, ie, untreated
> hayfever person will probably develop food allergies and MCS, over time.
> And suppressing symptoms with antihistamines is essentially "going
> untreated" since they do nothing to reduce the body's reactivity.
Antihistamines - I ate them like candy for over 15 years. Now for the last
year I've had none of them or any type of cold medications...not even aspirin.
Phil (an EPD success story)
______________________________________________
/~rohrers/allergy/epd_list/5145
Date: Mon, 23 Nov 1998 23:24:31 -0800
From: Evie Bennett <evie at povn.com>
Subject: [EPD] [Fwd: 11th Shot]
To: EPDSUPPORT at WVNVM.WVNET.EDU
To all those who have expressed interest in my story, I will try to
answer your questions. I always approached EPD with a positive
attitude, from the beginning. I did get discouraged more than a few
times, but never gave up, and it took me a long time to figure out what
I think most of you already are doing. I learned from many comments
made from the list, so I hope that something I say can be helpful to
someone else also.
I started EPD in June 1996 and have had 11 shots, with my 12th
approaching on Dec. 9th. I took shots every 2 months (with one
exception due to illness) until after my 8th shot. I then started to go
every 3 months, not because I was better but because it was time & the
stress of the whole shot routine was getting me down. The nurse said
sometimes you just have to make the jump to having them furthur apart-
if nothing else it helped my morale! I had 3 months between the 8th,
9th, & 10th shots and then went 4 months until my 11th. It is also 4
months from the 11th to 12th shot. I felt that there was some
improvement in some areas of allergy after some shots, and others I felt
worse. My 6th, 9th & 10th shots were followed by hyper sensitivities to
chemicals at work and to foods I ate. I found I had to be much more
careful than what my doctor & nurse seemed to indicate was necessary.
I had trouble with major low blood sugar drops within an hour after
almost all shots, except the last one. I now believe that has to be a
major problem for me. I don't know if it was responsible for failure
but may have been a factor. I always have very low blood pressure when
they check it before the shot also. What I did different last time was
to eat lots of fresh halibut for breakfast, lunch, & dinner! I do not
like fish but found this tolerable, and had found the lamb & rabbit
intolerable in the past. Of course, the yams, tapioca wafers & cooked
carrots, etc. were also consumed. But the protein is vital for me. The
Granose margarine is a BIG help in stablizing blood sugar also by adding
a much needed fat to the diet. Cooked carrot juice just isn't enough &
in fact may not be a good idea! I am finally ordering from Special
Foods and baking and adding even more variety to those 3 vital days to
keep my blood sugar level up.
Next, I have found that I must always avoid exposures of any kind after
the shot. I can not go in a store or back to work or anywhere but
home. My shots are always given on Wednesdays and so I do not return to
work until the following Monday! I didn't believe this necessary
originally & the doctor didn't either, but IT IS! I have become
sensitized to all kinds of chemical things after shots by going into a
store or to work- it is not worth it- stay home or someplace "safe".
This may be elementary, but I do not think enough people are careful
enough after their shots.
Another difference before my last shot, my doctor switched me to
Sporanox instead of the Diflucan I had taken for the first 10 shots.
The Diflucan, originally very helpful, seemed to be losing it's
effectiveness. The Sporanox felt very different and must have killed
different stuff. It may have added to the effectiveness of shot #11.
And the last, but perhaps the one thing that may have really made a
difference with the 11th shot is that I finally asked my doctor about
adding the formaldehyde to my shot. The 11th shot is the first one that
it was added to. If you are having a lot of oversensitivity to
chemicals I would suggest that this be a part of your shot. I only
learned about this by reading about others success on this list, I think
my doctor would never have added it without my suggestion & asking him
questions from what I had read here.
I can not say for sure why the 11th shot was sucessful- because of the
above or just because it was time, but I have seen a marked improvement
in the past few months and am just starting to have a return of symptoms
in the last few weeks. My most bothersome symptoms include irritable
bowel & gut aches; ear, nose, & throat problems; fatigue; mental fog;
major food cravings; hip bursitis. Most of it, I am able to deal with
and live a normal life. I have seen little progress with the tiredness-
it is embarrassing to fall asleep on your desk at work or in meetings
and dangerous to doze while you are driving- these continue to be
problems. My doctor just started me on 5-Hydroxy L-Tryptophan and
changed my hormones (again) and I seem to be sleeping better at night
which I hope leads to being less tired during the day. But the
irritable bowel, and ear, nose, & throat problems are much improved with
this last shot. Also I had super major colds, infections, etc. after
most shots and about every 2 months. I just had my first cold since the
11th shot and it was a very mild one indeed! I just feel stronger.
I have only barely touched upon parts of my story. My message is the
same as others have said, stick with it & keep trying different
approaches, it is well worth the effort! I thank those who responded to
my message. Still no information has come about the Tortilla Chef- I am
going to Seattle for Thanksgiving & will look for it there. Thank-you,
Stan, for the source & information on Replete.
Evie
______________________________________________
/~rohrers/allergy/epd_list/3789
Date: Thu, 28 May 1998 03:36:37 -0300
To: epd at list.pitt.edu
From: Marc Fassart <mark2 at cvtci.com.ar>
Subject: EPD-De Paul Study
, MD,
President, American EPD Society It has been the policy for the American
EPD Society to "stay off-line" in regards to EPD, since EPD is still
undergoing investigation in the U.S. (and very few of us have had the
time, anyway). Although EPD is officially supervised under an IRB/FDA
investigation in the United States, we have felt it was best to keep a
low profile, as the FDA would frown on any material which might be
construed to be "advertising." However, EPD has now "gone public" as a
result of the computer world. We have found, for many patients, that in
order to insure the greatest success of EPD, adequate patient nutritional
preparation, some control of intestinal pathogens, some control of severe
hormonal dysfunction, and a few other precautions need to be considered
before EPD is ever given to the majority of patients. The "DePaul Study"
The results of the "DePaul Study," a survey done in 1994 (305 patients)
of the effects of multiple treatment modalities used for ill patients,
has been perceived by some to show that EPD was "unsuccessful." EPD had
only significantly helped (classified as "enormous help," or "major
help") 33.3% of the patients reporting (23.8% categorized EPD as a
"slight help," so EPD "helped" 57.1% of patients overall -- still
significantly below our general Study Data results). Further, when EPD
was compared to the 50 "active" treatment modalities surveyed for this
group of patients, it was ranked second highest as "enormous help"
(23.8%), behind only IV gamma globulin (which was ranked 27.3%, but
ranked as "major help" in no patients, so EPD ranked higher than IV gamma
globulin overall). The North American EPD Study Data -- Availability of
EPD In 1993, I published a preliminary study of 134 patients of the
effects of EPD on several conditions 12, using a simple database I
designed to evaluate most all of the patients I initially treated with
EPD.
______________________________________________
______________________________________________
______________________________________________
Â
/~rohrers/allergy/epd_list/6752
Date: Fri, 4 Jun 1999 22:11:03 -0700 (PDT)
To: epd at onelist.com
From: Marge Jones <mastent at nidlink.com>
Subject: [epd] Clarification
From: Marge Jones <mastent at nidlink.com>
Eileen - Yes, I wrote The Allergy Self-Help Cookbook and co-authored The
Yeast Connection Cookbook with Dr. Wm. Crook. I wrote and published
"Mastering Food Allergies" Newsletter for 10+ years, though I stopped it 2
years ago. (However, we keep the back issues available to meet the needs of
folks recently diagnosed.)
Glad you're getting interested in EPD. It has been good for me and so many
others. FYI, you can read about 20 pages of free info on the Internet by
visiting me on my web site:
http://www.nidlink.com/~mastent
You're welcomed to click on each topic, but may be especially interested in
the EPD section. It includes a brief "bio" of my story of allergies, and
how bad they were and how much better I am now. I don't doubt for a minute
that having untreated allergies for many decades creates a situation that
will take longer to get better. In fact, I may be one of those who will
need an annual "booster" from now on. That's fine by me - I still regard
myself as a success story, based on my quality of life. (And treating
allergies with antihistamines is basically leaving them untreated. The
symptoms are suppressed, but nothing is really making the allergic person
LESS ALLERGIC! Big difference.)
Good luck to you in your quest for better health!
Marge
______________________________________________
/~rohrers/allergy/epd_list/6091
Date: Wed, 24 Mar 1999 22:29:59 -0800 (PST)
To: epd at onelist.com
From: Stan and Marge <mastent at nidlink.com>
Subject: [epd] Re: Neutralising technique
From: Stan and Marge <mastent at nidlink.com>
Hi, Marisa - Despite the fact that I just read you have decided to go with
neutralization, I want to toss my $.02 worth in. I was off-list briefly, so
didn't know of this discussion. I did neutralization for over a decade,
with reasonably good success. But I got very tired of playing pin cushion,
as my end points changed and I'd have to be subjected to another half day or
more of re-testing. My poor upper arms would just rebel. Eventually, I
came to hate those doc visits. I realized I was NOT getting any better.
Calculated roughly what a decade of this therapy had cost my insurance - it
was staggering!!! Also took a realistic look at my health. Although for
brief periods, while the shots were working fairly well my energy level
would hold at a fairly functional level - but my allergies were as bad as
ever. It occured to me that I had been treading water, with the
neutralizing shots helping to keep my head above water. But I had not
gotten anywhere! Treading water did not put me back in the swim of life.
About this time I had the opportunity to hear Dr. Len McEwen present his EPD
pitch to the American docs attending an AAEM conference in Jacksonville, FL,
in 1990 or 91 (I was there as a journalist). I couldn't believe my ears!
Here was a therapy with the potential of making people well again. It took
me a while to make the transition, and I stayed off all therapy - just
rotated foods and tried to avoid environmental offenders - for a few months.
Then started EPD. It wasn't always easy, but I KNEW I was getting
somewhere. I had decided to stick with it for as long as it would take, and
after 6 years I only need an annual "booster" EPD - imagine! once a year, to
live more or less as a normal human being, with average-for-my-age energy,
and way better than the level of life I had regarded as functional on the
neutralizing shots.
To read more about my success story you may visit my web page:
http://www.nidlink.com/~mastent
If I sound prejudiced, I plead guilty! But I have been there and done much
too much of that. I feel very blessed that a cure for allergies emerged in
my lifetime. I can honestly say that nothing else has even come close to
similar results. If I could take back all of the time and effort and PAIN
and MONEY that I invested in those miserable shots I would have been
eternally grateful. I have nothing to show for that decade of treading
water and getting no where. However, today I know I'm living life on a
different, higher plane since early into my EPD therapy. The difference in
my quality of life is simply beyond words.
Blessings on you as you search for the right path for you.
Marge
Â
______________________________________________
______________________________________________
______________________________________________
/~rohrers/allergy/epd_list/9
Date: Tue, 1 Aug 1995 10:44:11 -0800
To: epd at list.pitt.edu
From: jstraks at oes.amdahl.com (Jerry Straks)
Subject: Re: New to list
At 10:05 AM 7/31/95, JOE GOLDSTON wrote:
>My wife has many allergies and MCS. She has just recently started EPD
>treatment. In fact, she is to get her second shot in two days. She tolerated
>the first shot without much difficulty, though it seemed "to wear off" a couple
>weeks ago. I understand that the second and third shots sometimes cause more
>problems. I would be interested in hearing whether this has been the case with
>other people. If so, is there any thing to do about it, or just "bear it and
>grin"; and what were the symptoms that showed up?
I had my 5th shot two months ago (May 31). I posted a report of the
results to alt.med.allergy about a month ago, but in a nutshell: The ONLY
effect I saw from the first 4 shots was that after the 1st shot, my food
allergies got worse and included more foods. After the 2nd and 3rd shots,
the worsening continued. I was almost sorry I had started EPD treatments.
The 5th shot was a turning point for me. Whereas before May 31 I could eat
nothing but the "very mixed diet" to avoid painful repurcussions, I am now
(after June 21) on a "see-food diet." I can now eat anything I see that I
want. I still have some minor reactions, but the tide has clearly
turned--and in a very striking way.
A friend of mine (who introduced me to EPD) talked to a guy who saw no
benefit until his 9th shot, at which time he was essentially cured.
This same friend saw minor benefit after his own first shot, setbacks after
the 2nd and 3rd, and steady improvement thereafter.
I vote for "grin and bear it." It worked for me.
Regards,
Jerry
______________________________________________
/~rohrers/allergy/epd_list/64
To: agm at village.ios.com (Alec Maines)
From: Jerry Straks <gms10 at juts.ccc.amdahl.com>
Subject: Re: Blastocystis Hominis
Cc: epd at list.pitt.edu, lib_johnh at books.viterbo.edu
Since it has been a (long) while since I gave any update on my EPD treatment, I thought I would take some time, but just do it once, so I am sending it to the listserver. Here goes:
I am 2 weeks away from my 8th injection. The benefits I reported last summer have continued, with minor fluctuations as the suppressor cells created with the help of the enzyme begin to "run out." This tends to be noticeable as I approach the time for my next injection (3-month intervals). I still eat **WHATEVER I WANT WHENEVER I WANT** between careful times! It is great! (I keep saying that if I were 30-40 years younger, I'd be doing cartwheels on the lawn!) The worst part of all this is that I have "thrown the baby out with the bath water." I not only abandoned the dietary restrictions enforced by my allergies, I have abandoned my "healthy diet" habits, too. It is like I have been restricted so long that I now have to go through a phase of re-tasting all the old tastes--EVERYTHING. I generally am satisified with doing it only once, but I continue to find things I have not yet re-tasted, many of which have too much fat, sugar, salt, etc. I eat them just because I can. (I have not yet hit all the major junk food establishments, for instance, but I probably will.) The binge seems to be running its course and I expect I will get back to a healthy diet by summer, at which point I should be done with all 9 shots and able to move to "boosters" every 6-60 months (not a misprint: 5 yrs. was mentioned as a possibility), depending on how I do.
I have found that if I can tolerate the symptoms, the more I challenge my system with former allergens, the more I can consume of that allergen with less problem, especially in the period immediately after a shot and its 3-week careful time. Bottom line: My "binge" is actually contributing to my recovery, since I pay no attention to ANY restrictions. I just eat. (I do limit quantities so I do not gain weight, but that is the extent of my carefulness.) That means that my hands generally itch. They are cracked (but not as bad as they once were). They hurt (but not as bad). They even bleed, but less and less often. The symptoms just keep fading--not fast, but fading nevertheless--as I do it. If I skip milk products (which were the original problem and are the only really noticeable allergen now) for a day or two, my hands heal quickly. I just checked. My hands happen to be fine today. That means I must not have had any milk products this weekend, although I'm not sure how that happened! (It certainly was not done consciously!) ;->
My key advice would be to follow the careful time rules as closely as you can, squeezing as much benefit from each shot as you can, since they build on each other. A slip does not erase the value derived from being careful, but it theoretically reduces it.
Now for some specific answers to those who triggered this update:
At 01:11 PM 1/24/96 -0500, Alec Maines wrote:
>Dear Jerry,
>
>We are very interested in hearing a followup from you on you Blastocystis
>Hominis infection 1/2 year later. I did a search on the internet and found
>your home page.
>
>What have been your symptoms since the EPD? Has anything happened since
>your homepage went up in July?
>
Continuous improvement, if viewed overall. Varying degrees of symptom severity, if viewed day-to-day. (See above.)
>John Hempstead and I are both suffering from asymptomatic Blastocystis
>Hominis infections. Actually, we've just gone through Flagyl(Metronidazole)
>treatment. John is in Denver and I'm in Washington, DC.
Yes, I did the Nystatin, Flagyl, and Yodoxin sequence, too, 16 weeks in all. The treatment worked, because a retest a year later came back negative.
>
>John had his for 11 years and I had mine for about 5 years. We both have a
>pain in our lower left side/back, can't drink coffee, I can't eat fats,
>John can't eat sugar.
I have no idea how long I had it, but it is possible it was as long as 40 years and as short as 12. Since I hate coffee and avoided fats and sugar, I do not know if they would have bothered me. They do not bother now. I do remember a pain in that location occasionally, but I never connected it with anything. Interesting.
>We both have celiac/gluten sensitivity symptoms.
>Other members of my family report celiac/gluten sensitivity symptoms. We
>are both pretty torn up in the intestines and don't know if there is
>something else or we just need to heal at this point.
I had no celiac/gluten sensitivity, although I exchanged recipes with friends who do. Their dietary restrictions overlapped mine, but that is all. I'd suspect an hereditary connection rather than a BH connection, but I'm no doctor.
>
>We would LOVE to hear from you as seemingly the only three human beings in
>Cyberspace dealing with Blastocystis Hominis.
>
>I'm writing this in a light vein but I'm sure you know that we're serious
>about this stuff. Thanks in advance. Alec
>
>Alec Maines
>Washington, DC
>
Best wishes in your treatment! Having been there and having been HERE, I hope you see as much benefit from EPD as I have.
Jerry
______________________________________________
/~rohrers/allergy/epd_list/134
To: James Newman <James at elija.demon.co.uk>
From: Jerry Straks <gms10 at juts.ccc.amdahl.com>
Subject: Re: EPD and animal allergies
Cc: epd at list.pitt.edu
At 10:03 PM 4/29/96 +0000, James Newman wrote:
>Hi,
>Does anyone have any experience using EPD for the relief of animal
>allergies? I am contemplating starting treatment later on this year but
>would like get some more info on the realities of EPD (I have had to
>foster out my animals since becoming allergic very suddenly last autumn,
>and need to plan their long-term future - if EPD cannot offer any
>significant short-term improvements, then I have some very hard
>decisions to make!)
>
>Thanks
>
>Elizabeth Moriarty
>
>
Elizabeth:
While my allergies were primarily food-related, I did develop respiratory problems and irritated eyes from being around cats and dogs. I could handle up to an hour without MAJOR discomfort, but beyond that I had noticeable trouble breathing (asthma-like) and red, uncomfortable eyes that basically eliminated me as a contributor to any conversation. My attention would switch to the clock and how soon I could exit. Fortunately, the symptoms abated within a few hours of leaving.
My food problems were so much worse and my animal exposure so rare that I did not put much thought or effort into the pet allergies. However, the food allergies are so magnificently improved that the pet allergies now loom bigger in my mind. To assure the EPD treatments would address the animal problems, I have intentionally exposed myself to pets in close quarters, with lots of petting and "lap work" (obviously AFTER the 3-week careful time!). What I have discovered lately (I am about due for treatment #9), is that I experience no problems whatsoever with the animal dander anymore! It is delightful!
Bottom line: No, I did not seek or expect animal allergy relief from EPD. Yes, I got it.
Hope this helps.
Jerry
______________________________________________
/~rohrers/allergy/epd_list/220
Date: Fri, 21 Jun 1996 14:27:54 -0700
To: Noel Cartwright <cartwright at earthlink.net>
From: Jerry Straks <gms10 at amdahl.com>
Subject: Re: Enzyme Potentiated Desensitization
Cc: epd at list.pitt.edu
At 11:10 PM 6/20/96 -0700, Noel Cartwright wrote:
>Am interested in any information regarding untoward effects or problems
>related to the desensitization process. Most allergists I have spoke to
>urge me to avoid it due to lack of research on humans and they feel the
>standard accepted programs are far more reliable. Any comments or input
>would be appreciated. There appears to be much concern about
>environmental medicines here in N.E.
>Cartwright at earthlink.net
>
Noel,
While you obviously need to do what you think is best, I can tell you about
my experiences with EPD and "the standard accepted programs." I have been
treated by 5 different allergists in 4 different states (1 EPD and 4
"standard") in my short 49 years. I have had 5 or 6 rounds of the
"standard" injections (weekly, bi-weekly, monthly with steadily increasing
dosages in sequences running 3 years or more) and 1 round of EPD. (I just
finished the 9 quarterly EPD injections covering 2 years.) I have had
inhalant allergies, asthma, eczema and food allergies. I have seen benefits
from both kinds of treatments.
For my money, I would choose EPD. EPD was expensive because insurance
covered nothing, but the overall treatment cost of EPD is actually
comparable to the overall treatment cost for the "standard" approach, in my
experience, if you ignore who is paying, and may possibly be cheaper. The
FDA is currently running clinical tests on EPD and I expect this insurance
situation to change in the future. Double-blind studies on humans in the UK
have shown remarkably good results, although I do not remember the details
my doctor shared with me. The benefits were so radically better with EPD in
my own experience that I would rather be well quicker and pay the costs
myself, if that is what it takes, than go with the old "standard" model.
Furthermore, the "standard" approaches can't do much for food allergies, if
that's what you have.
I admit that I am but one data point and that I am describing personal
empirical observations, rather than clinically sound double-blind results.
However, my training is as a physicist. I understand experimentation and
careful observation of real--as opposed to imagined or desired--results. My
results with EPD were not in my head. They were opposite to what I expected
at each stage. They got worse when I expected improvement. They got
radically better when I was prepared for another round of worsening. They
were physically observable (cracked, bloody hands from eczema) and not
subjective opinions about how I felt at any point. Even if one cannot
generalize from my single data point, I CAN say that the results I report
are real.
I went from being able to eat almost nothing without causing cracked,
bleeding hands, to eating everything with almost no physical symptoms. If I
were 40 years younger, I would be doing cartwheels on the lawn!! The
aggravation of over ten years of avoiding milk products and then a growing
list of food allergies is over! The nuisance of bleeding on my suits and on
my work is over! The 5 allergists I have known all told me that "standard"
treatment could not treat food allergies directly. EPD treated food
allergies directly--with great success. (And my allergies to animal dander,
which I was never too concerned about, went away, too.)
(I suspect that the reason I have any symptoms at all now is because I
believe I inadvertently broke one of the rules for treatments #7, #8, and
#9: I proceeded with the injections despite harboring 2 low grade
infections in my body. My GP--not my allergist--told me I was infection
free before #7, but recurring symptoms since then cause me to believe
otherwise. Looking back, I should have done something about it when I first
began to suspect he erred. We have since changed doctors for other reasons.)
The minimal reaction I still have to allergens is slight. Milk products of
all varieties used to be "deadly." Reactions were MUCH greater than with
other foods. Current example: The other day I had milk on my cereal in the
morning, a BIG piece of lasagna followed by a piece of cheese cake at noon,
and a piece of cheese on a sandwich at night. This led to a couple dry
spots appearing on one hand, one of which cracked slightly, but without
being so deep as to bleed. Two years ago I suspect I would have been in the
hospital with reactions all over my body after such a massive dose of my
worst allergen. When I behave myself and avoid excessive amounts, I notice
nothing.
In regard to "untoward effects," EPD caused my allergies to get much worse
for the first year of treatment. At the start of the second year, after
injection #5, I saw a radical improvement that has continued through to the
end.
Another "untoward effect," perhaps, is that one has greater personal
responsibility for the success of one's treatment. The degree to which you
follow the rules--which I never found particularly onerous or difficult to
follow in either case--seems to have a greater impact on the amount of
benefit you see with EPD than with the slow but steady "standard" approach.
With the "standard" approach, the progress is steady but almost microscopic
from one treatment to the next.
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.)
Another "untoward effect", if you want to call it that: Once I could eat
again, 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.
Other than that, I am aware of no other negatives in my personal experience
with EPD.
Good luck!
Jerry
______________________________________________
/~rohrers/allergy/epd_list/413
Date: Tue, 10 Sep 1996 12:36:17 -0700
To: epd at list.pitt.edu
From: Jerry Straks <gms10 at amdahl.com>
Subject: Re: Shot #14 -Reply
At 04:47 PM 9/10/96 GMT, you wrote:
>>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!
>
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!)
For those of you currently in that same kind of state, all I can say is,
follow the procedures and rules as perfectly as you can (i.e., "milk" as
much value from the treatment as you can get--the AMOUNT of benefit you get
does seem to be related to how well you follow the protocol), stay in
contact with your EPD physician and hang in there. I have heard countless
stories of how things got better after the 3rd or 4th or 9th or 7th or 14th
treatment, for instance (the 5th, in my case). While it may seem a bit like
voodoo, what I have seen is that the pretreatments for infections, the
skipping treatment during times you're fighting infection, the diet, the 3
critical days, the careful time, the vitamins and all the rest create a
special environment in your body that is favorable to encouraging your
immune system to do certain, desired things during the careful time. The
closer you come to creating and maintaining that environment for the full 3
weeks, the more benefit you derive. If you cheat, you typically do not lose
all the benefit, but it does seem to blunt the effect.
Regards,
Jerry
______________________________________________
/~rohrers/allergy/epd_list/565
Date: Tue, 17 Dec 1996 15:20:39 -0800
To: epd at list.pitt.edu
From: Jerry Straks <gms10 at amdahl.com>
Subject: Re: EPD info Please.
At 11:44 PM 12/15/96 -0800, Greg Krouse wrote:
>Dear Person:
>>
>> I found your email post in one of the old files of the immune list
>as you were discussing EPD shots.
>>I have been working with Dr. Sinaiko out of SF,CA and am rapidly
>approaching the point where
>>we decide to do the EPD shots. I have read in two places that they can
>cause strong reactions at first and
>>I am wondering about the long term success. I am mildly CFS with more
>malabsorption problems then
>>anything else.
Dear Greg:
I, too, was a patient of Dr. Sinaiko. I have nothing but praise for his
concern and treatment of my allergies and those of my son. I went through
the 9-shot sequence over 2 years--Dr. Sinaiko follows what I have seen
described as the UK protocol of Len McEwen(?), as opposed to the US protocol
of Dr. Shrader--and have seen a life-changing improvement. My son had his
first injection before Thanksgiving.
During the first year (4 injections) I wondered if I had destroyed my life,
because I was far worse off than I was before I started and was getting
progressively worse with each shot. Before I started EPD, I was allergic to
most foods and slowly worsening. EPD accelerated the worsening radically.
At the low point, I was allergic to EVERYTHING I had eaten with any
regularity, which meant I could eat beets, spinach, buckwheat and rhubarb
with impunity, but nothing else. FORTUNATELY, I had a friend who was seeing
improvement, so I decided I had nothing to lose by continuing. (He has CFS,
so I will check with him for the latest report on his condition for you.)
The Very Mixed Diet--or the VVMD, as some in this group have called it--kept
me alive for the worst 4 months.
After the 5th injection it was like someone flipped a switch. I was able to
eat anything and everything. It did not last until the next injection, but
it was glorious while it lasted! After each succeeding injection the
effectiveness and the time it lasted increased. (I have heard 3 other
stories about this same kind of radical change. One saw it after the 3rd,
one after the 7th, and one after the 9th.)
My last injection was May 1996. I am still doing marvellously. I expect I
will need a booster before next fall (10-20 months after #9), but for now,
I'M NORMAL!!
I was told EPD had an 80% success rate when I started. That means 20% would
not describe their results as "success." I was one of the fortunate ones.
Perhaps it was because we were able to eliminate the root cause. Dr.
Sinaiko found the parasite (blastocystis hominus, if I spelled it right)
that was at the root of my problem and killed it. (Three allergists and
several other MDs over a period of a decade had told me there was nothing
they could do--and did not look as aggressively as Dr. Sinaiko did, either,
I might add!) Starting EPD is not something to take lightly--20% is
significant and the protocol is hard. However, if you decide to start it, I
believe it needs to be with a commitment to stay with it for some minimum
time (like 2 years?) to make sure you don't quit just before it bottoms out
and begins to improve. I shudder to think where I would be if I had quit
during that first year....
I'll let you know how my CFS friend is doing.
Regards,
Jerry
______________________________________________
/~rohrers/allergy/epd_list/9159
To: <epd at onelist.com>
Date: Fri, 10 Mar 2000 12:25:45 -0500
From: "Stan Rohrer" <srohrer at scitexdpi.com>
Subject: [epd] EPD Success Story
From: "Stan Rohrer" <srohrer at scitexdpi.com>
Some of the "old-timers" here may remember Jerry Straks from the early days of the EPD List. If you want to follow his story or refresh your memory, check the stories page at:
http://www.dma1.org/~rohrers/allergy/epdstory.htm#JERRYSTRAKS
He dropped me a note recently about his current EPD status. Starting his EPD treatments in 1994 (I believe) he went through the deep valley with his early shots. Now on the other side he still considers himself an EPD success.
<<<< Note From Jerry Straks - posted with permission>>>>>
[snip of accolades concerning the EPD FAQ]
A quick update on me: I am now living in Washington State.
My eczema is just starting to return, 4 years after
completing my EPD. The symptoms are pretty minor and only
occur if I consume significant quantities of milk products,
but after being normal so long, I'm spoiled. I decided it
was time for a booster. I had my re-entry appointment
(different doctor) today. I was originally told to expect
to need a booster in 1-5 years, so 4 years is not bad. I
expect to have the booster in 3 weeks (after a stool test,
since it has been so long). I'll let you know how the
booster works out.
[snip of personal non-EPD banter between us]
<<<<<>>>>>
______________________________________________
______________________________________________
______________________________________________
Â
Â
/~rohrers/allergy/epd_list/316
Date: Mon, 5 Aug 1996 10:32:15 -0400 (EDT)
From: Jozsef A Toth <jtoth+ at pitt.edu>
Subject: 10 days after: reactivity
To: epd at list.pitt.edu
I had a really bad weekend beginning about thursday (6 days after) and
finishing up today (10 days after). No matter what I ate, I reacted to it
in a big way; almost as badly as I did in the past. I can see now the big
mistake I made with my earlier shots 1-4. About a week after my injection,
I would go back to my normal diet. This most likely made my condition
WORSE rather than better. It was the major slump after #4 that forced me
to pursue a far more restricted diet for the 2 weeks following the
injections. This reactivity after #9 is the worst I've experienced since
then. The Pink Book, however, is more or less right about the fact that
this reactivity isn't as bad as the original symptoms I suffered before I
sought treatment. But that doesn't make the suffering any easier...
---joe
______________________________________________
/~rohrers/allergy/epd_list/1818
Date: Mon, 4 Aug 1997 10:59:42 -0400 (EDT)
From: Jozsef A Toth <jtoth+ at pitt.edu>
Subject: Update on #12
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 exericse 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.
- ---joe
______________________________________________
/~rohrers/allergy/epd_list/1826
Date: Tue, 5 Aug 1997 10:30:18 -0400 (EDT)
From: Jozsef A Toth <jtoth+ at pitt.edu>
Subject: Re: Update on #12
On Mon, 4 Aug 1997, Kelly Marinelli wrote:
> Jozsef,
> Thank you very much for the encouraging post.
> About your food allergies, can you please answer the following:
>
> 1) What foods were you allergic to?
Hard to tell. Using the process of elimination, during each successive EPD
shot, I was able to determine during the "unmasking" the few weeks after
the shot, which foods I was sensitive to. The blood test I did before I
started EPD was not helpful at all. At any rate, I discovered that I was
allergic to most grains and many different kidns of fruits and vegetables,
including tomatoes. I also blood-tested positive for candida and
gut-tested for a certain type of bacteria; so I do the diflucan and
gastromycin the 10 days before the shot. For the week before and two weeks
after, I really reduce my diet to exclude ALL grains and anything else
that could be suspect. I stay away from anything that I later consume in
large quantities, including dairy. I was doing ultra clear for the week
before, but I'm going to cut it out as well; too expensive.
> 2) What quantities did you have to ingest before experiencing a
> reaction?
Before EPD, a normal 4-5 slices of pizza would lay me out the next day.
Same for chocolate and god-knows-what. During early EPD, for the few weeks
after the shot, even the smallest amount would wipe me out. A shrimp
dinner would do it, as well as other kinds of seafood. Now after the 12th,
I can eat most things with impunity.
> 3) What symptoms would you experience in reaction to an allergic food?
Foggy brain, stiff joints, sore muscles, migraine, depression, etc.
> 4) After which shot did you start to see improvement with foods?
See the recent message on the "W" phenomenon. That's how it went for me as
well; but each time, gradually improving. It's up and down for me, no
magic cure. For some in my Dr.'s office, improvement was immediate, for
others, like me, it has been gradual.
> 5) When did you start stretching out shots to 3 months?
After #9. Now after #12 I'm stretching to six months.
> 6) Does a shot's effect on food allergies wear off before the next shot?
Depends on the food. Some have been really stubborn, like chocolate. I
really don't like it that much anyway, so I just stay away from
concentrated chocoloate concoctions. The grains have come back very well
though. In the early shots, the improvement would be for a few days, or a
couple of weeks, but never enough to last the whole two months. #4 and #5
really sucked, 6/7 were better, got worse, then finally better again. The
BEST I've felt was for the week directly after #3; everything, I mean
everything, went away; but then, the symptoms came roaring back.
______________________________________________
/~rohrers/allergy/epd_list/2229
Date: Mon, 13 Oct 1997 10:33:59 -0400 (EDT)
From: Jozsef A Toth <jtoth+ at pitt.edu>
To: epd at list.pitt.edu
Subject: five months after #12
I am scheduled for my 13th injection 3rd week of November, it's been about
5 months since #12. Odd thing is, I don't think I need it. The inhalant
allergies are still giving me trouble, but the food allergies are still in
abeyance. I've determined that most of my headaches are related to coffee
and caffeine. I did an experiment with chocolate yesterday and did not get
sick, like I usually do. I'm almost tempted to wait until I start getting
sick again, which is what the Dr. recommended anyhow.
---joe
______________________________________________
/~rohrers/allergy/epd_list/4904
Date: Mon, 19 Oct 1998 06:53:31 -0400
From: Joe Toth <jtoth at PSRW.COM>
Subject: Re: FW: REJECTED POSTINGS
I didn't start getting relief from chemicals until shot #10 or so. I've had
13 shots to date and am now waiting perhaps two years before I get the
next one. This morning an awful perfume got to me on the DC Metro and I had
to go sit at the other end of the car. So I doubt I'm cured, but it has
gotten a lot better.
---joe
______________________________________________
/~rohrers/allergy/epd_list/5432
Date: Tue, 22 Dec 1998 09:06:21 -0500
From: Jozsef A Toth <jtoth+ at PITT.EDU>
Subject: [EPD] Personal Experience with EPD Treatments (fwd)
To: EPDSUPPORT at WVNVM.WVNET.EDU
(follows is a message sent to quackwatch).
---------- Forwarded message ----------
Date: Tue, 22 Dec 1998 09:04:58 -0500 (EST)
From: Jozsef A Toth <jtoth+ at pitt.edu>
To: research at quackwatch.com
Subject: Personal Experience with EPD Treatments
Dear Dr. Barrett,
I have been an EPD patient since the Fall of 1994. Since that time, I have
undergone 13 sets of injections. I didn't explicitly find EPD, it found
me. Although roughly 40 physicians administer EPD in the US, I happened to
live four blocks from mine; who has since retired (retired as the result
of being 60+ years old). I had received "conventional" allergy treatment
for a few decades, with marginal relief. In the earlier part of 1994, my
physical state declined and was experiencing severe migraines, fuzzy mind,
muscle and joint aches, extreme reactions to certain chemicals, perfumes,
and cleaning agents. I sought this EPD provider for expertise in allergy
treatment, not knowing about EPD. This provider had just returned from
England, training with Dr. Leonard McKewen - the progenitor of EPD - and
suggested I give it a try. My initial diagnosis was allergies to food,
chemicals, candida yeast, and inhalants. Although I had a blood test, in
retrospect I think it was largely inaccurate. But I definitely had a wide
spectrum of allergies.
The "conventional" treatment is really not a treatment - avoidance,
rotating foods, etc. - and as a scientist, I was able to see through the
quackery of "conventional" allergists. If one believes in the scientific
method, the null hypothesis is to assume that a doctor, any doctor (even
Jonas Salk), is a "quack", until proven otherwise, such that the null
hypothesis can be rejected; i.e., gathering enough evidence through
experience with a treatment or through research. The allergy business is
primarily based on verbal feedback from patients as well as the
not-so-reliable results from skin tests. Conventional allergy injections
have not been approved by the FDA. Unfortunately, many physicians in most
areas of medicine have little or no training in the scientific method or
in research methods (including statistical methods) and thus are prone to
the biases the scientific method, ironically, is supposed to help
attenuate (e.g., "It worked for some of my patients, therefore it is a
'good' method." A doctor who claims this is falling prey to the
availability heuristic). Thus, physicians who claim proficiency in
scientific reasoning are really at the "quack" level of expertise, arguing
only with opinion, ego, myopia, and the threat of losing fees for services
rendered.
After about 9 injections, which have to be spaced at a minumum 8 weeks
apart, I began to experience relief, particularly from foods and
chemicals. Now, after 13 injections, I can eat a wide variety of foods
with impunity and am much less sensitive to chemicals, including perfumes,
that really used to bother me. In the past, the wheat from a few slices of
pizza for dinner would have laid me out the next day, now, I wake up the
next morning with NO side effect. I have had moderate success with
inhalants and regarding the candida allergy, my muscle/joint aches have
greatly improved. All in all, I can say that EPD has been 75 percent
successful for me. Any "placebo effect" would have long since gone away.
The injections are now spaced a year apart, and eventually I will stop
altogether. Therefore, I can say that EPD worked for me. At least a few
double-blind studies have been performed with EPD reporting success in the
method. "Conventional" allergists simply ignore this important fact and
refuse to read the reports. So much for keeping an open mind.
I think your website provides a valuable service for those considering any
method. I only wish you would include skepticism of more "conventional"
procedures as well. Again picking on "conventional" "scientifically
accepted" protocol, not too long ago, it was perfectly normal for patients
to smoke in their hospital beds. For grins, I searched your site for
Ritalin and was pleased to find information about its overuse. I was
disappointed, however, when I looked up amalgam and found "scientific"
claims supporting its "conventional" use. When I read carefully, I find no
citations supporting these claims. As a matter of fact, when one carefully
reads the claims made by the ADA, the "research" supporting their claim is
a report in a trade journal with no scientific merit. I've posed the
following thought experiment to dentists: if lead (the metal lead) were
found to combine with silver or some other safe metal to provide a
superior and resiliant dental filling, and the vapor or lead by-products
were only given off in "trace amounts" would you use it? The answer is
always a resounding "No! Lead is a poison!". Well, so is mercury (at this
point, the subject is rapidly changed to something else). Again, the
scientific "reasoning" of a "conventional" health practicioner falling
prey to bias, convention, and contempt prior to investigation. My present
dentist uses composite fillings and dental insurance covers it. So, over
time, I hope to see a drift away from amalgam as parents make the sane
choice to not stuff mercury, even if released in "trace amounts", in
children's mouths. That is what we will choose for our child.
Good luck with your website and I hope to read more about EPD and how it
has worked for others.
Jozsef A. Toth, Ph.D.
______________________________________________
/~rohrers/allergy/epd_list/11863
To: epd@egroups.com
From: jtoth@ida.org
Date: Wed, 17 Jan 2001 15:09:35 -0000
Subject: [epd] I'm Back/Request for the Excel Spreadsheet
Hello,
I was active in an earlier incarnation of this group circa 1994. I had
my last treatment in March of 1998 (#14) and since then have gradually
gone downhill. I've moved to Northern Virginia and had my introductory
visit with Dr. Steven Halbert in Phil. PA earlier this week. I
developed Fibromyalgia somewhere between treatments 12-14 and the Doc
thinks I might not have had the proper gut prep which has led to my
current state. I also came down with Pneumonia in 1999 and after I
recovered, I was diagnosed with asthma. Oddly, EPD has cured my food
allergies and strongly curtailed my MCS allergies. The inhalant and
fibromyalgia allergies are giving me the greatest grief right now.
I've been plagued with sinus and upper/lower respiratory infections
for at least the last six months and my 'regular' docs have been
trying their hardest to help.
______________________________________________
/~rohrers/allergy/epd_list/11871
To: epd@egroups.com
From: jtoth@ida.org
Date: Thu, 18 Jan 2001 12:35:14 -0000
Subject: [epd] Thanks, Fibromyalgia (was Re: EPD-Friendly Lodging?)
I was doing great circa 1997 and 1998, but in 99 I came down with
pneumonia and a succession of sinus/respiratory infections I never
quite recovered from. The Fibromyalgia Syndrome (FMS) kicked in Feb of
1997 three weeks, to the day, after an EPD shot. It started as severe
pain in neck and shoulders and then gross fatigue, "brainfog", etc.
came later. The neck/shoulder pain started, literally, that day, out
of nowhere. The first Dr. said it was post-viral and prescribed
Flexaril, which helped, but not much. When I relocated to VA in 1998,
I sought out a Dr. who was Sports Medicine specialist and he diagnosed
it as FMS/MPS. To be honest, at the time, I didn't see a FMS-EPD
connection. I wanted to stay off EPD for a few years to "see what
would happen".
Finally, I hit rock bottom and sought EPD doc proficient in FMS.
Fortunately, he's a few hours drive from here. It turns out my last 4
shots included the EPD soup for some type of Klebsiella bacteria in
the gut. He thinks the FMS may have been brought about by insufficient
gut prep. In my case, I didn't take the antibiotic Doxycycline in the
week prior to the shot, I only did Diflucan, Bismuth, and Gastromycin.
I don't fault the last practitioner, and she has since retired - she
did the best she could. I'm keeping my fingers crossed that the next
few treatments will turn things around. I hate the constant illness
and pain, especially the pain, which I manage with whatever I can,
including exercise, stretching, flexaril, Soma, and norflex.
But there are other subtle indicators that it is time for another
shot. I am 20-25 lb overweight. During my peak of wellness 97-98, I
was near my ideal weight and couldn't gain wait, even if I tried! I
actually went on a cruise for a week, ate like a horse, and had *lost*
weight after it was all over. Now I'm bloated and can't tolerate foods
and have crept back towards the 'mono' diet with foods that my system
prefers, including sweets. So, it's obviously time for a 'tune-up'.
______________________________________________
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