Stan Rohrer's Allergy Story and EPD Diary

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For comments concerning this page, please contact Stan Rohrer <Stan_Pub at EarthLink dot Net>.

Index:

• Introduction

• The Early Years - Diagnosis

• Dealing With the Problems - The Diversified Rotary Food Diet

• Looking Back Towards Childhood - Now I See The Connections

• Moving Into The Future - Enzyme Potentiated Desensitization (EPD)

• EPD Diary

  • EPD Shot #1 - 10/11/96

  • EPD Shot #2 - 12/6/96

  • EPD Shot #3 - 1/31/97

  • EPD Shot #4 - 4/4/97

  • EPD Shot #5 - 6/20/97

  • EPD Shot #6 - 8/15/97

  • EPD Shot #7 - 10/10/97

  • EPD Shot #8 - 2/6/98

  • EPD Shot #9 - 10/16/98

  • Wilson's Syndrome Cycle 1 - 4/22/99

  • Wilson's Syndrome Cycle 2 - 6/10/99

  • Wilson's Syndrome Cycle 3 - 8/9/99

  • Wilson's Syndrome Cycle 4 - 10/12/99

  • Wilson's Syndrome Cycle 5 - 11/16/99

  • Wilson's Syndrome Cycle 6- 12/22/99

  • Wilson's Syndrome Cycle 7- 1/28/00

  • Wilson's Syndrome Cycle 8- 3/3/00

  • Wilson's Syndrome Cycle 9- 4/8/00

  • Wilson's Syndrome Cycle 10- 6/24/00

  • Attempting A New Diagnosis 1- 9/13/00

  • Attempting A New Diagnosis 2- 11/14/00

  • Lyme Disease #1 - 12/1/00

  • Lyme Disease #2 - 12/14/00

  • Lyme Disease #3 - 1/25/01

  • Lyme Disease #4 - 3/19/01

  • Lyme Disease #5 - 5/1/01

  • Lyme Disease #6 - 6/12/01

  • Lyme Disease #7 - 10/27/01

  • NAET #1 - 1/02

  • NAET #2 - 2/02

  • NAET #3 - 3/02

  • NAET #4 - 3/02

  • PEPTAGEN - 8/02

  • Lyme Disease #8 - 7/04

  • Lyme Disease #9 - 9/22/04

  • Lyme Disease #10 - 10/20/04

  • Lyme Disease #11 - 11/17/04

  • Lyme Disease #12 - 12/15/04

  • Lyme Disease #13 - 1/17/05

  • Lyme Disease #14 - 2/18/05

  • Lyme Disease #15 - 3/21/05

  • Lyme Disease #16 - 4/14/05

  • Lyme Disease #17 - 5/23/05

  • Lyme Disease #18 - 6/23/05

  • Lyme Disease #19 - 7/25/05

  • Lyme Disease #20 - 8/18/05

  • Lyme Disease #21 - 9/19/05

  • Lyme Disease #22 - 10/12/05

  • Lyme Disease #23 - 11/12/05

  • Lyme Disease #24 - 12/05/05

  • Lyme Disease #25 - 1/12/06

  • Lyme Disease #26 - 2/6/06

  • Lyme Disease #27 - 3/3/06

  • Lyme Disease #28 - 4/3/06

  • Lyme Disease #29 - 5/16/06

  • Lyme Disease #30 - 6/12/06

  • Lyme Disease #31 - 7/17/06

  • Lyme Disease #32 - 8/15/06

  • Lyme Disease #33 - 9/13/06

  • Lyme Disease #34 - 10/11/06

  • Lyme Disease #35 - 11/16/06

  • Lyme Disease #36 - 12/4/06

  • Lyme Disease #37 - 2/5/07

  • Lyme Disease #38 - 3/5/07

  • Lyme Disease #39 - 4/5/07

  • Lyme Disease #40 - 4/30/07

  • Lyme Disease #41 - 6/25/07

  • Lyme Disease #42 - 8/8/07

  • Lyme Disease #43 - 9/4/07

  • Lyme Disease #44 - 10/1/07

  • Lyme Disease #45 - 10/29/07

  • Lyme Disease #46 - 12/11/07

  • Lyme Disease #47 - 01/11/08

  • Lyme Disease #48 - 02/09/08

  • Lyme Disease #49 - 04/01/08

  • Lyme Disease #50 - 04/28/08

  • Lyme Disease #51 - 06/02/08

  • Lyme Disease #52 - 06/30/08

  • Lyme Disease #53 - 07/29/08

  • Lyme Disease #54 - 09/2/08

  • Lyme Disease #55 - 09/29/08

  • Lyme Disease #56 - 11/24/08

  • Lyme Disease #57 - 12/22/08

  • Lyme Disease #58 - 01/22/09

  • Lyme Disease #59 - 02/16/09

  • Lyme Disease #60 - 03/17/09

  • Lyme Disease #61 - 04/14/09

  • Lyme Disease #62 - 05/12/09

  • Lyme Disease #63 - 06/30/09

  • Lyme Disease #64 - 07/27/09

  • Lyme Disease #65 - 09/08/09

  • Lyme Disease #66 - 10/07/09

  • Lyme Disease #67 - 11/07/09

  • Lyme Disease #68 - 12/14/09

  • Lyme Disease #69 - 01/13/10

  • Lyme Disease #70 - 02/08/10

  • Lyme Disease #71 - 03/08/10

  • Lyme Disease #72 - 05/08/10

  • Lyme Disease #73 - 04/05/15

  • LDA/Lyme #1 - 07/08/15

  • LDA/Lyme #2 - 09/10/15

  • LDA/Lyme #3 - 11/6/15

  • LDA/Lyme #4 - 12/12/15

  • LDA/Lyme #5 - 03/04/16

  • Celiac - 2/25/20

Introduction

Prompted by headaches and monthly treatments for sinus infections, I embarked on a medical road of finding relief from these continuing problems.  Little did I realize that on the journey I would encounter food sensitivities, chemical sensitivities, along with inhalant allergies.  No, I'm not a horrible basket case as some I've read about.  No, I'm also not "out of the woods" either.  I seem to have a wide spread group of sensitivities, which fortunately only produce moderate, not life threatening, symptoms.  I tell my story here for the benefit of others who are trying to determine sensitivities and treatment.  I will write about my allergy diagnosis, food allergies, multiple chemical sensitivities (MCS), the Diversified Rotary Food Diet, a review of childhood symptoms, and Enzyme Potentiated Desensitization (EPD) as a treatment (including the follow-on United States versions of LDA and LDI). This perspective is from personal experiences of a lay person and patient - I am not a member of the medical profession.

The Early Years - Diagnosis

In the mid to late 1970's I was having regular problems with sinus congestion and headaches.  My General Practitioner (GP) Doctor would take a look and decide I must have a sinus infection.  The bouts were treated by antibiotics.  The bouts became more frequent over time, to the point of a couple times a month in some months.  My trips to the doctor became "cookie cutter" style.  A phone call to announce I have a sinus infection again, the 5 minute visit to get another prescription for an antibiotic, the trip to the drug store, and ten days of medication.  A week or two after the last medication, I'd start all over again.  

I'd settled in Dayton, Ohio, USA during this time.  Interestingly the natives often call the Miami Valley the "sinus valley".  I've heard a story that said the white man settled here because the Indians knew better.  Occasionally I'll hear someone call it the "arm pit of the earth".  Maybe the historians and meteorologists can confirm or deny the folklore, but I knew sinus problems as a reality.

The GP decided I must be fighting allergies.  So he sent me off to an allergist who did the skin prick testing for allergy suspects all over my back.  Nothing showed, so the allergist sent me on my way.  

After a few more bouts, the GP sent me to an Ear, Nose, and Throat specialist.  Upon hearing the results of the allergists tests, he didn't pursue that path.  He did, however, do X-rays and determined my sinus cavities were inflamed, but saw no polyps or other obstructions.  He assigned a medical name to my problem and called it "Vasomotor Rhinitis".  His definition was (I'll attempt my own words here) "for some unknown reason your sinus linings inflame, swell, and drain".  So my condition then had a name, that sounded like good news.  It wasn't long until it dawned on me that this was the undefined catch-all name for something these medical professionals didn't understand or know how to treat.

After a few more bouts, with the approval of my GP, I got real friendly with over-the-counter decongestants, namely Afrinal 12 Hour tablets, and Drixoral 12 Hour Non-Drowsy Tablets and some of their predecessors.   Basically these are Pseudoephedrine Sulfate in time release form, and without antihistamines.  I learned that many of the nasal sprays are effective, but only for a day or two and then they become addictive.  The tablets helped, and I used at least one a day, often up to 3 in 24 hours (more than recommended on the label).  This became my survival technique for quite a few years.  Fortunately it reduced my infections, and with aspirin to reduce swelling and inflammation, I could make it through rough sinus days.   I noted that Tylenol, and most of the other over-the-counter pain killers, did not have nearly the swelling reduction effect as good old basic original arthritis strength aspirin. When a sinus attack lasted long enough to start becoming an infection, the tablets, aspirin, and a couple of days with the nasal sprays, had a fair chance of counteracting it.  However, I still all to often saw the GP to cover the infections.

In 1984 I married.  One of the bonuses was that my new bride had inhalant allergies and understood a bit of what I was going through.  With my GP retiring, I went to her GP and then also took her recommendation for an allergy doctor.  So with this new combination I tried again to find out where the root of my problems were. The allergy doctors in this office turned out to be not only an ear, nose and throat surgeons, but also clinical ecologists.

By my definition now, a clinical ecologist troubleshoots the symptoms because they are a problem.  In my view, an allergist detects responses measurable in the blood, or by skin reactions.  The subtle definition difference is not so subtle when the doctors choose techniques to find sensitivities to foods and chemicals.  The clinical ecologist may use  the allergist's blood and skin testing, but if they haven't been useful in resolving the problems, he will go on with less conventional means to find the root of the problems.  The allergist is out of his league when blood tests and skin tests do not pinpoint a problem.  Foods and chemical sensitivities, in the1970's and early 1980's, apparently did not have good tests at the blood analysis level.  I'm not sure that they do even in the mid 1990's.  I feel I was very fortunate to find a bride who led me to an MD, surgeon, allergist, and clinical ecologist, all wrapped up in one package, within a few miles of my home in Dayton, Ohio.

So the clinical ecologist I chose, Dr. Gardikes (gar-dee-kus), of Dayton Ear, Nose, and Throat Surgeons, decided to ignore all the previous findings and strike out anew with the diagnosis.  He preferred a skin injection  test to the scratch tests, but these also showed very little in the way of inhalant sensitivities.  For most people, these levels would have not been worth treating.  In my case, as an attempt to fix anything to lessen the total allergy load, I started allergy shots to cover the likes of ragweed, grass, dust, dust mites, mold, trees, paper, and newsprint (ink).  Allergy shots proved dismal.  Within about 20 minutes I had what appeared to be systemic reactions producing severe headache, some added sinus congestion, and general lack of energy.  Upon returning to work after one such experience, one of my co-workers commented that I looked like I had an ice pick stuck between my eyes.  It was an apt description of how I felt.  The preservatives were removed from the shots to no avail.  Reducing the shot strength didn't help.  Where most people take about 5 to 8 allergy shots to build to a maintenance level, I had gone through at least this many, with problems, and had not yet reached the usual first shot dose satisfactorily.  I quit this routine since it was only offering negative results.

The next attempt was with sublingual (under the tongue) drops using similar mixes to the allergy shots which failed.  Incredibly these worked, and within a few weeks I was at a maintenance level of the doses.  Since my testing showed low level of sensitivities, this treatment didn't fix all my problems, but was enough to be worthwhile to reduce whatever could be touched. This form of therapy continued for many years.

After we had settled in on the drops, but still had problems, Dr. Gardikes started into foods and chemical testing.  Many of these tests were also done as sublingual drops using a provocative neutralization technique.  The idea is to put drops under the tongue and wait ten minutes to see if the patient notes any physical changes in symptoms (such as sinus congestion or headache in my case).  If not, a stronger dose is tried, and the results noted, until results are obtained.  Reducing the doses back down in steps, and observing when the symptoms subside, is used to determine the strength of a treatment dose to later be put into use.  The test is interesting in that, within an hour or two in the doctors office, the symptoms could be worsened and then reduced seemingly on command.

So much for the test theory and usual operation, my body didn't react that way. We could provoke my problems with any number of test substances from the food and chemical world.  However, attempting to reduce them and determine a neutralization level didn't work.   Baking soda, antihistamines, or other attempts were not immediately effective to reduce the symptoms.  I went away from many of these just to let time take its course in reducing the symptoms.  From here it was up to me, the patient, to train myself to become the detective to research the roots of the problems.

Dr. Gardikes provided some books to start assessing food and chemical problems.  His office outlined the Diversified Rotary Food Diet to test for problems in the food line.  The chemicals would have to be determined simply by observation and provocation using items in my environment.

Dealing With the Problems - The Diversified Rotary Food Diet

I will not provide all the rules and details of the Diversified Rotary Food Diet here.  Basically it is a routine where a person does not eat a food (i.e. lima beans) but once every four days.  Foods from the same biological group (i.e. legumes) are not allowed but once every two days.  This diet, based on a description from the book The Yeast Connection by William G. Crook, MD, and other sources, is described for use as both diagnostic work and for reducing the chances of a person becoming sensitive to the foods they can currently tolerate.  It is certainly a drastic change to the habits of the family cook and requires research on compatible food families when beginning to design the diet.  At the outset, no food is considered safe and must be tested into the diet (a provocative test to see if it intentionally can be made to produce symptoms).  

Note, that in the mid 1990's, Dr. Len McEwen, one of the EPD treatment scientists has a differing opinion of the results from using the 4 day rotation.

After many months of trials and errors I got a feel of the basic problems.  The first I found was that yeasts, molds, fermented foods, dried foods, many condiments (household pepper), and other mold related processed items, produced my sinus congestion and subsequent sinus headaches.  One evening we had a party at our house.  I had been true to the test regimen and set my self up for a test of cheese at our party.  I took one bite of a mild swiss and waited ten minutes.  Soon my relatively open nose was sealed shut to the point I had to breathe through my mouth for the rest of the evening.   I tried to counteract the reaction with a suggested glass of baking soda and water mixture to no avail.  It was days before my sinuses recovered to the somewhat better state that I was enjoying while being on the strict diet.  However, this event fixed in my mind that foods were involved and that I might be able to control my sinus problems via intentional actions on my part.   Cause and effect links could now be established.  Now progress was being made.

As a side note here, it's my understanding now that the difference between allergies and sinus infections can be easily detected by looking at the drainage from your nose.  If the drainage is clear it's an allergy.  If the drainage is cloudy yellow-green, then its an infection. Hence colds, or upper respiratory infections, can be noted by the color in the tissue used to clear your nose.  If the color remains more than the normal few days for a cold, then it has likely settled in to your sinuses as an infection.  For my kids, their doctor won't call it a sinus infection until the problems have lasted over a week.  In my case, my sinus congestion rarely had any drainage, only swelling.  To wit, I never carried a tissue or handkerchief through the sinus problems.  Based on this evidence, and the sinus congestion cause and effects of cheese noted above, I would place bets that my many previous treatments for sinus infections were miss-diagnosed and I was actually fighting congestion and sinus pain from allergenic sources, and not from sinus infections.  The antibiotics appeared to work only because time was the cure.  As time progressed beyond the impact of the cause, the symptoms decreased.

Further diet trials showed a sensitivity to all fruits.  The fruits testing symptoms opened my eyes to things I hadn't previously related to allergies.  To pick on the worst offenders, pineapple and grapefruit, I learned a lot.  A drop under the tongue for 10 seconds (remember sublingual testing above) is the fastest way to the blood stream short of an injection by needle.  A drop of these fruit juices produced results even before the swallowing at the end of ten seconds.  A sweaty flushed face was the obvious sign (well, to people who are not color blind, as I am).  I noted immediate loss of brain function as in terms of concentration, depth of reasoning ability, and some memory recall losses.  Later I would learn the commonly used terms of spaceyness and brain fog (brain fag) to identify these conditions.  In effect, the boundaries of my cognizance could be quickly reduced to a much smaller playing field simply by ingesting fruits.  The day after such ingestions were seen to produce dried sinus linings and an increased likelihood of  nose bleeds.

This was the first time I realized how far reaching the problems might be and that the course of my life may be headed downhill if such sensitivities were not treated in some fashion.  It became very conceivable that, unchecked, further erosion of brain and cognizance functions could be in my future, and some day, perhaps even already, would negatively effect my livelihood as an engineer.  The rotating food diet was now no longer a test mechanism but was to be my hope for long term survival.

The diet continued, and testing continued by using the diet as a baseline.  Some people find that total avoidance of problem foods, for even as little as two weeks, will not produce symptoms on retest.  Total avoidance means reading all labels and avoiding anything that even hints of a "pinch" of the food item.  You will need professional help, or lots of research, to find the lurkers that can negate the efforts.  For example, licking a postage stamp will give an ingestion of the corn based adhesive and could ruin a corn test.  Likewise, cornstarch is used on paper plates to reduce the sticking together, and eating from a paper plate has been known to negate an elimination test.   The lucky people, who can complete the elimination, may be able to use the previously problem items once a month or even once a week with impunity.  Once again I found that I don't follow the normal results.  Eggs are the only things I have ever had fail and come back.  After 6 months I could eat a few, but a half dozen at a sitting would again produce sinus problems.  After a year of general avoidance I could could eat any quantity without problems.  Since eggs originally produced sinus problems, I began use them as "recreational eating" instead of as a mainstay on my diet.

After a few years my diet settled down to a routine.  The regular 4 day routine consisted of  barley, potato, turkey, rice, lima beans, beef, oats, fish, chicken, green beans, pork, cabbage. These were generally used as one food per meal.  Most red and white meats would be usable but I choose the cheapest, most available items, where they worked.  Seafoods were split between fresh water (sometimes worked) and salt water (generally didn't work) varieties.  Without the ability to do seasoning, the stronger flavors were not to my taste liking. Almost all of my cooking was done in glass containers since some early testing produced varied results with water boiled in various metal cookware.  This testing was done with clear boiled water, from various pieces of cookware, and then tested under the tongue when each had cooled to room temperature.  The allergy symptoms were a thick feeling in my head much like the dull beginning of a headache.  At one point I had a Corning person pick one of the Visions glass skillets off of the manufacturing line for me before the non-stick coating was applied.  This became my mainstay cookware.

The cookware tests included stainless steel cookware.  This raised questions relating to the use of needles for the previously failed allergy injections. This issue has never been clearly answered nor were my cookware tests clearly repeatable.  In any event, other injections, such as the antibiotics for sinus infections, have not shown the systemic reactions that were seen with allergy injections.  Hence, at this juncture, I still believe the systemic reactions to allergy shots was due to the allergy serum or carriers and not to the needles or syringe.

My diet has been very helpful over the long haul.  I tended to stick to the items I know work for me for 5 days during the work week.  After all of this time, I have learned what restaurants have foods that won't hurt me to bad so I can enjoy a weekend evening out on occasion, or hit a fast food place for a baked potato while travelling.  The good news is that I know enough about my sensitivities to make a conscious decision of "shall I eat it?" versus " how will I feel today and tomorrow?".  A couple of years into the routine, even Dr. Gardikes told me, "I don't know why you bothered to set up and come to this appointment.  You know more about your allergies, at this point, than I do."  To me that was a nice gesture in that he was not stringing me out to get my money.  In retrospect, it also let me know that I had some command of my medical destiny.

If readers of this page are considering the rotating diet, note that it is very unlikely that the symptoms and causes that you have are the same as mine.  Allergies in the chemical and food areas often have unique responses for each individual. The individual must learn to become the detective to track down the specific problems.  The diet is a tool for the food sleuthing.  Note that I have not covered all of the theory and diet rules here for the Diversified Rotary Food Diet.  In recent years it is also being learned that the 4 to 5 day rotation may not be effective as a diagnostic tool.   An avoidance of 7 days, and then testing a food on day 8, is a better cycle for a test.  The 4 day diet is being found to mask, or cover up, allergy symptoms and, with this caveat, is still a very useful tool for the food allergic person who can't find other relief..

For those of you in a similar situation as I, you can do some uncontrolled sublingual testing as I've eluded to above.  I've used this technique very often when I encounter foods I don't know about.  Of course the initial thing is to ask the hostess or waiter about the ingredients and how the selected foods are prepared.  Then, of course, steer clear of your major offenders.  Secondly, don't tell them about "allergies", but instead, ask to have your selected food prepared in your desired manner because you "have a medical problem and would rather not have to visit my doctor today".  This reduces the interpretations of what is an allergy and how does this relate to ragweed or some other non-informed opinion.  It also reinforces that this is more serious than I just "don't like pickles" and I'll get over it if it comes out wrong.  In my case, the seasonings and flavorings are among my biggest problems so it's just easiest to buy eggs from the breakfast menu with "no salt, pepper, or other seasonings on any of the food items".  Then when the food comes, the uncontrolled sublingual test is simply placing a small bite of food under the tongue for ten seconds, a minute or two pause, observe for any of the known symptoms, and I can usually tell if I will get a major problem or be able to swim through a minor problem with the food.  At that point I pick and choose among the foods provided, as the kitchen has likely done it's best under the circumstances of preparing for a food problem they have no chance of understanding.  With the sublingual test approach, only a minimum amount of the questionable substance is needed.  Hence, with a little luck, any negative responses will not last as long or be as severe as if a substantial amount had been ingested. As a NOTE OF WARNING, you are intentionally trying to provoke an allergic response with this test and it would be a good idea to have someone available who could provide medical help if reactions become severe!  This is not a good test to be tried by an anaphylactic person!

So this is the story, at the close of 1996, as I approach diet week 600.  I don't know exactly why I started numbering the menus I made for my wife, but it has been an interesting trip.  She would cook the food, but not create the diet sheets, and I know when to leave well enough alone. ;-)  Having been a long way down this road, now the routine all changes again with my entry into EPD.  But first a few comments and connections with my past.

Looking Back Towards Childhood - Now I See The Connections

There are a few cases where I can now make connections to symptoms in my earlier years. Shortly after high school I worked on a turf farm (grass to be harvested for creating "instant" lawns in housing developments).  I remember telling my mother that the peanut butter and jelly sandwich made me sleepy shortly after lunch. This was not a good thing when operating farm machinery.  So she gave me two baloney and cheese sandwiches instead.  I can now see that the fruit (jelly), sugar, molds from peanuts, and yeast bread, added up to a cocktail that produced fairly immediate results.  The jelly probably had the biggest quick effect on my symptoms.   Even though the mayonnaise, cheese, bread combination was also later found troublesome, the problems from this combination were symptoms that stretched over days, in terms of sinus and drowsiness problems, and didn't have a noticeable short term peak as in my symptoms from the fruits (jelly with sugar).

As a child, rides home on the school bus sometimes made me nauseous.  Most likely these were days warm enough that jackets may have not been required but the bus windows stayed rolled up.  The combination of old lunches, banana peels, bologna sandwiches, coupled with bus exhaust fumes, were troublesome.  I was glad to get off the bus on those days before my stomach turned.

Playing football in high school, I noticed some practice days where I had some problems breathing because of a stuffy nose.  Today, late summer grass cutting produces similar symptoms.  Most likely they are from the ground molds of late dry summer, and possibly from grass and ragweed pollens.  Today these are not severe, but certainly noticeable and, until recently, somewhat controlled with the prescribed drops under the tongue for inhalants.

Running track in high school, a part of our track was low and wet.  Sinus congestion was then noted when I ran there in early spring, instead of running distance training on the roads.  I suspect molds here, as well as the unique smells from the track cinders.

When I got water up my nose from water skiing, my sinuses clogged for days.  Certainly something irritated them. I see now that four days to relief is a usual allergy time period.  When on antibiotics for sinus infections, the operative is that some relief should be seen within a few days or the antibiotic is not working.  Note the timing coincidence.

After buying a house, I noted that I would get fatigued very quickly when sealing the blacktop driveway.  After the first half of the can I would be getting very tired.  I may not have been in great physical shape but certainly I knew I was better than this was showing.  Now I know my chemical sensitivity to the blacktop sealer fumes plays a major part in this fatigue.

According to my understanding, the tendencies towards allergies are inherited, but not the individual sensitivity.  My brother turns red-faced, just as I do, when eating vinegar based (fermented fruit juice) items.  Though perhaps less sensitive, I'd bet he inherited from similar roots. Dr. Gardikes made a comment that my kids were next in line, coming from both parents with allergies.  I think it was he that said blond haired, blue-eyed, boys, with long eyelashes, tend to be allergy sensitive.   Something in the genes I guess.  My brother, I, and my kids, come close enough.  My kids have sinus problems and ear infections.  One of these days it will be serious enough to begin the tracking routines.

Moving Into The Future - Enzyme Potentiated Desensitization (EPD)

In 1995, at my yearly checkup with Dr. Gardikes, he suggested I consider this new experimental treatment called EPD.  I'm not one to arbitrarily throw drugs at a problem (even though I've done a quite a bit of that) and certainly wasn't excited about experimental treatments.  Since the diet control seemingly was keeping me on a flat slope, I didn't pursue the option.  In the summer of 1996, again at my checkup, he again suggested EPD might be a consideration for my case.  I decided to buy the "pink book" and at least learn about the option.  I also did now available Internet searches and joined the EPD mail list that I found.  The 80% chance of improvement to an 80% level seemed impressive enough, especially considering the testing was likely done on the rough cases where other treatments were not effective.  The 2 year review  notes from the FDA study records showed the positive results.  However, the down side short term risks and the noted  potential problems concerned me very much.  

I decided I could always start whenever I changed my mind, so I decided to wait and watch the results and comments for a while.  This proved to be a bit spooky.  It seems the problem cases are the primary topics of discussion on the Internet EPD mailing list. This makes sense since the people, for which EPD is working, don't need to spend the time to search out answers and solace.  The people with problems tend to hang out on the mailing list.  For the education, I did attend the doctors pre-EPD session and inquired about all of the down side issues.  Yes, I was told, the downside potentials are there, and do happen.  A portion are likely related to not following the established protocol I was told. Others cannot be predicted and unfortunately do happen, often do to fall-out of previously undetermined allergies.  It is a risk to calculate, and a disadvantage to weigh, when considering how each individual is handling the current problem load.  The good news, I was told, is that having problems is not common.   The doctor also required a minimum commitment of 6 shots to begin the EPD treatment.  I decided to sit it out longer.

Then in late summer came the news from my work that we would be building a new facility and I was likely in the first wave of employees to move into the new building in the fall of 1997, maybe sooner.  With a bit of horror, I recalled a move into the current (then new) building in the early 1980's.  Outgassing of the concrete structure, carpet, glues, and other new building materials, were a terrible problem.  By the end of each work day I was so exhausted that I could hardly function to get out of the place.  It only took a couple of days to learn that the water from the drinking fountains in this building sent my head spinning.  It must have been the new pipes and/or pipe fitting compounds.  To this day I carry filtered water from home in a glass lined thermos.  After a few months I settled in, and with tighter control of my foods, survived and even improved as the work site aged.

In addition, my job may require some future trips to the middle east.  Carrying food is not likely an option.

Now I had real incentive to consider EPD while I could get an advanced running start before banging headlong into the coming problems.

A remaining downside was the cost, since medical insurance typically won't cover the experimental stuff.

I decided to go for it. Through the EPD treatments I will be watching my specific symptoms and problem sources.  Possible related symptoms: sinus congestion, headaches, brain fag, spaceyness, anal itch, ear pops when swallowing, ringing ears, lethargy, fatigue, itchy eyes, dry skin on hands in May and June, snoring.  Possible sources: fruits, yeasts (vinegar, bread, alcohol, vitamins, vitamin fortified or enchriched items, food coloring, yogurt, cheese, soured foods), molds (damp weather, damp basements, ground molds, old books, dead plants after a killer frost), any food that goes through a drying phase (table pepper, cinnamon, most any spices, beans, nuts, even just smelling potpourri pots), paper dust (phone book, computer paper, books), house dust, dust mites (clean shirts hanging in closet unwashed for over two weeks), ragweed, grass, trees (early spring varieties), magazines, newsprint (printer inks), petroleum products, paint thinner, carbonless forms, hot new electronics (computers, monitors), other chemicals.

EPD DIARY

EPD Shot #1 - 10/11/96

Before getting into the pre-shot protocol I did uncontrolled sublingual testing of the supplements required for the EPD protocol.  I found the Vitamin C and Multi-Mineral to affect me like fruits do, spacy and red faced.  Upon using them for a few days, I decided they must have not had enough volume to cause additional bad reactions when ingested.  I rigidly followed the protocol through the period.  I had concerns that stopping the decongestant tablets and access to aspirin, in advance of the shot, would cause me sinus problems and possibly lead to an infection.  It wasn't easy but, with a few bad days, I struggled through it.  In the end I had survived the whole two months without decongestants or aspirin.

A couple of attempts to treat the anal itch, from a hemoroid perspective, failed.  For years I've selected soaps that seemed to reduce the problem.  Coloring agents, additives, even the toilet paper used may affect the itch.  The antibacterial pump soaps were somewhat beneficial of late.  Various other combinations of antifungal and antibacterial preparations had been tried with some success.  Many of the petroleum based ointments made matters worse.  Upon getting into the EPD protocol,  all of these were to be avoided during the protocol period.  A natural preparation of mineral salts is the only deodorant allowed in the protocol.  It turns out that daily application of the mineral salts are effective at controlling the anal itch better than most anything I've tried.  Hopefully EPD will eventually help but this is certainly a usable solution now for me.  The natural, mineral salt, "rock", deodorant can be found in health stores and some other retail outlets.  I found one in a nice push-up container, as opposed to the lump of crystal, in one of the area department stores.

For years I had used Johnson Baby Shampoo for my hair.  Then a year or two ago they changed the fragrances to something that bothered me.  I shopped a long time and found that even the "fragrance free" brands often have a masking fragrance instead of no fragrance.  During the critical period of the EPD shot, only Simple brand shampoo and soap are allowed.  Apparently they are less allergenic than other brands during the critical time when EPD can create allergic responses.  For people sensitive to shampoo and soap, look for Simple brand products and give them a try.  They seem to be fragrance free and have been the answer I needed for cleansing near my face (inhalants problems).  I understand they also have a hand lotion that might be beneficial for dry skin.

My doctor started me on a preshot gut prep of Nizoral and Bismuth for 10 days. He had considered Nystatin instead of the Nizoral but I had a very bumpy ride with it for a number of months early in my food allergy discovery days.  I had expected some "die-off" symptoms with the prescribed drugs but they never really developed.  This went smoother than I had expected.

For some reason I had a slight headache before the EPD shot and that somewhat worsened the day of the shot and the following day.  Was it due to EPD?  I had it going in so I doubt it.   Perhaps it was to the change of foods in my diet.  The shot may have helped ease the sinus congestion in the following week, I can't be sure.  But if it did, it was so small that I was struggling without my decongestants to provide even the small amount of help they do.  At days 7-10 I noted that things tasted more intense.  Again I'm not sure if I noted relieved sinus symptoms but I was hopeful for anything.  It was a long wait, but at weeks 4 and 5, I noted some improvements.  For a few days around day 23 I even felt cold air in sinus cavities that I had forgotten existed below my eyes.  The improvements fell off as I approached week 6.  Dr. Gardikes, at the follow-up visit, was surprised I had noted this much, albeit short, improvement from the first shot.  The good news is that I saw no downside effects or noted any fallout of new sensitivities from the first shot.  These results were enough to get me excited that EPD may be a workable treatment for me.

Getting retrained to not do the rotary diet is a tough routine to break.  It sounds simple.  But after 600 weeks it has become so ingrained in the family routines, that menu planning, and using my non-allergenic foods without rotation, is a challenge.  Actually, after the one food per sitting rotary diet routine, the mixed diet for EPD, even though selection limited, is a step up for me.  I actually enjoyed the critical protocol days since I was able to mix some foods, even though quite limited by the protocol.  Hopefully some foods will come back into use and make this task easier as I progress.  I'd like to think I could handle a good pizza some day.  I will have long since "arrived" when I can handle yeast, tomato paste, oregano, cheese, sausage, and pepperoni, all in one sitting.

The EPD protocol suggests that large amounts of single foods are more likely to cause sensitivities with the EPD method of treatment. Dr. Len McEwen, a principle in the development of EPD, believes that foods used in a 4 day rotation, as I have done, will actually be masked instead desensitized.  Contrary to Dr. Crook's basis for the Rotation Diet, McEwen feels that 4 days is about the exact time to mask, or cover up, food symptoms instead of clear the body.  Masking will confuse the patient as to whether the body is not sensitive, or so over sensitive, that symptoms are no longer produced.

Cost is another consideration.  Having completed one cycle of the treatment I can calculate the costs.  I know this will vary among doctors and individual situations.  In my case some of the office visits and prescriptions can be covered by health insurance.  The shot is an item I'm going to fight with the insurance about.  Some of the vitamins and supplements will likely never be covered by insurance.  My total two month shot cycle cost is estimated at $417.  Most doctors require a 6 shot minimum commitment to get started.  EPD appears to take this minimum sequence to get past the possible problems and up on the usefulness curve of the program.

EPD Shot #2 - 12/6/96

For shot #2 I followed the EPD protocol as well or better than I did for shot #1, rigid, and by the rules.  The one possible exception  was that my wife had some outpatient surgery early the day before the shot.  I spent some time at the hospital but I was able to abide by all the rules of water and food ingestion.  As for chemical exposure, my EPD doctor didn't think I would run into anything that would be troublesome for me.  I was able to stay away from perfume scents (at least as detectable to my nose).  Otherwise I was at home for the course of the three critical days.  I approached this shot hoping to see additional good response as I saw from shot #1.

This time the response seemed to not go nearly as well.  I did not see any heightened sense of taste during days 7-10 as previously noted.  I did not see any boost at weeks 4 and 5 as previously noted.  So much for favorable expectations.

About Christmas day, the middle of week 3 (day 19), I suspect I got nailed with a cold that had been making it's rounds in my household.  It might have also been some holiday food to which I reacted or the EPD shot kicking in a negative way.  In any event, I was miserable with cold and sinus symptoms. After about 4 days they cleared slightly but my sinus problems went into a sinus infection.  I toughed it out until decongestants were no longer restricted by the EPD protocol (week 4).  The use of decongestants seemed to help but then the sinus problems rebounded.  Not wanting to take any more chances of delaying the next EPD shot, I decided to get to the doctor and he set me up on antibiotics (Trimox/Amoxicillin), decongestants (PPA with Guaifenesin), and a steroid nasal spray (Beconase).  These were in use for weeks 5 and 6.  The infection improved but the congestion, headaches, brain fog, and lethargy (fatigue) continued and slowly got somewhat better as I approached shot #3 (week 8).  

Looking back at the response intensity curve, though in a negative intensity direction, I suspect that much of the problem may have been a negative result of the EPD shot and not a cold.  The effects lasted similarly and tapered similarly to shot #1, although they were on the negative side of the scale and lasted somewhat longer.  As of 1/31/97 I've improved but not quite back up to the baseline where I was before EPD and when I kept very strictly to my rotating diet.  Certainly I've had a month of continuing symptoms about as bad as any in all the years (about 20) where I've been seriously fighting sinus and head problems.  One period which may have been worse was about 10 years ago when my work moved into a brand new building and I was amidst all the new carpet, paint, adhesives and the like.

I am certainly glad I saw some positive response with the first shot, and knew that some rough spots were often a part of the early EPD shots, or this one would have been very disheartening.  The EPD nurse commented, when I got shot #3, that the office has been seeing a common pattern of late of a slight boost on the first shot, problems encountered with the second, and sometimes a boost on the third.  I've certainly got my fingers crossed for #3!

EPD Shot #3 - 1/31/97

I followed the shot protocol closely without any known misses.  For food during the critical three days I again took the approach that "crock pot rabbit stew" was the easiest all around preparation which was tasty and used the allowed ingredients.  Basically this is an altered form of the lamb stew found in the Pink Book and cooked in an large (I think it's 8 quart) crock pot.  The rabbit is more appealing to my taste than the sharper taste of lamb.  Sometimes I substitute buffalo (doctor approved) as the meat.  Buffalo makes it much more like a beef stew.  The second day after the shot I ate beef stew.  The following week was my non-allergenic foods as best I could select.  Again I took Thursday and Friday off of work and stayed at home for the critical three days.  The shot was given on Friday.

After the major hit I took from shot number two, I was hoping that #3 would be better.  At the time of the third shot I was still recovering from shot #2.  I never did get back to a point similar to my level prior to EPD shot #1 (my pre-EPD baseline level).  For the week after this shot I continued slight improvement as I suspect the negative effects of shot #2 continued to ware off.  The second and third weeks were bumpy with some better periods and some worse ones.   These switched by the day and sometimes by the hour.  The primary problems were very dry sinuses, fatigue, lack of concentration, and lack of mental abilities (brain fog).  At day 21 I may have seen a slight turn around for the better but it certainly was not much better than the best of the previous weeks high spots.  By day 25 and the end of this third week, the bumps had settled down into a smoother ride which was somewhat below my pre-EPD level.  As time passed to week 9 (my next shot was delayed a week), I slowly drifted worse.  By the time I got to shot #4 I had not reached the bottom as defined by shot #2, but I was approaching that level once again.

Around this town, the tree pollens come out about the time the daffodils also bloom.  These flowers are in full bloom and the EPD nurse said we are at about peek tree pollen time when I got shot #4.  Tree pollens are also very likely a contributing factor to how I felt through the late weeks after shot #3 since I am sensitive to them.

I've still got my fingers crossed for EPD.

Having been a few rounds with the insurance company.  I can now say they are not willing to cover "experimental" treatments.  EPD is considered experimental by them.  Hopefully when the FDA/IRB study is completed I can try another fight.  Unfortunately that is about two years away.  Oh well, I counted on this when I started EPD.  

My medical pre-tax spending account for last year was used up before submitting EPD costs so I don't know how that avenue will work as yet.  According to some references it will be like the insurance companies.  Others have said that it should be based on the tax code for medical expense definitions.  The tax code approach makes sense here.  We'll see after I make some submissions to the insurance which get rejected and then resubmit them to the medical account.

EPD Shot #4 - 4/4/97

I had a scheduling conflict with this shot.  It was supposed to be administered 3/28/97 but was given 4/4/97.

This shot still didn't produce positive results.  Not as bad as #3, but certainly not a positive boost.  Usually my results have been noted about 21-25 days after the shot.  However this time I didn't see much, but a week later ended up with a sore throat.  At my scheduled checkup, the doctor gave me antibiotics in hopes that it would clear an infection if that were the cause of the sore throat.  Tree pollens are high and they may be a contributing factor as well.  In any event I am not better than my pre-EPD level as yet.  The doctor appears concerned that I'm "not a success story" at this point.  We groped for possible reasons and his consideration at the moment is that perhaps I'm being overdosed and reacting negatively.  To this end, the next shot will be postponed an additional month and we will see if I return to my pre-EPD level or even rebound to a positive benefit.  He says I've been given the high strength serum level and perhaps we may also need to cut this back.  This decision is partially based on my history of a positive response with #1 and then negative responses since.

My current problems of major concern are the brain fog and physical fatigue.

I again was very strict around the days of the shot and see no reason that any out-of-bounds plays were made that should have produced negative results.

After leaving the doctors visit it dawned on me that a few years ago I had failed an attempt to get traditional allergy shots.  Twenty or thirty minutes after these shots I had fatigue, brain fog, and headaches.  A number of the shots were attempted at serum levels much less than the usual first shot level for most people and I still experienced the problems.  At the time I blamed things like the preservative, syringe, or serum preparation.  We did shots with normal-saline instead of preservatives to no avail.  Other injections of other medications were not known to bother me so it was tough to blame syringes.  I eventually went to sublingual drops which were marginally, but somewhat, helpful.  Perhaps there is a relationship where the EPD kicks in after the 21 days and I'm seeing the same basic results that were quicker to respond under the traditional therapy.  More questions to discuss with the doctor.

I went back again for another review with my EPD doctor, a month later, on 6/9/97.  By this time I had started a list of possible items to discuss to see if we could determine the source of my continuing problems.  Included were the possibility of EPD overload, the reasons why I stopped traditional shots earlier, the reports from some people on the EPD Mailing List that the Terpenes and Chemicals tend to cause some problems which may be related to overload, whether Amalgam Mercury (the standard silver) dental fillings were involved, or whether what I was experiencing may just be a severe case of unmasking.  I never did get into much discussion about these issues since I suspected I had also uncovered another major problem that needed addressed.

During the month, as I was brainstorming with myself on these possible considerations it dawned on me that I had done a sublingual test with most of the EPD supplements prior to shot #1 (keeping a diary such as this sometimes proves helpful in such respects).  Prior to shot #1 I found the Vitamin C and Multi-Mineral to affect me like fruits do, spacy and red faced.   My EPD doctor didn't seem concerned about the results of the sublingual gross test then since I didn't note any systemic problems when the supplements were ingested in the specified quantities.  Then, 7 weeks after shot #4, I decided to stop all supplements. The day after I stopped was about the same as I had been doing - fair to poor. The second day after I stopped was one of the worst days of fatigue I have experienced since Christmas and likely anytime in my life.  I felt like I was 12 hours late to bed when I got up that morning. It was a significant effort just to get one foot in front of the other and complete a day at work.  I almost cancelled some plans for an outing the next day because I doubted I would have the energy needed.  On the third day I had scheduled a trip to HamFest, a worldwide gathering of Amateur Radio Operators, which is held in Dayton, Ohio.  I walked the 3000 parking lot flea market spaces and the additional vendor exhibits inside the convention building in my quest for hobby computer parts.  Amazingly, at the end of the day I still had some energy left.  The fourth day I walked the HamFest again and again had energy left.  Later, upon describing this to my EPD doctor he suggested that these symptoms of "withdrawal" would certainly indicate that I had developed a strong sensitivity to something among the supplements.  I had tried again just the essential oils and did not note any problems.  Zinc, may have been a slight problem but I was also in some different environmental conditions that day and may have been influenced there.  I never did go back and try either of the Multi-Mineral or the Vitamin C since these were the only remaining supplements I was taking when I stopped and these were the most likely candidates in my estimation.  I did note that I was more sensitive to my fruit problems and possibly also to my mold problems.  Without the supplements as a part of my routine I felt much better - though not quite back to my pre-EPD state of sinus and fatigue levels.  The increased sensitivity to things in my environment likely account for this.

As my EPD doctor and I discussed this possibility, and he heard my descriptions of change, he agreed that we may not be fighting an EPD overdose but perhaps this increased sensitivity.  With an EPD overload, he expected that I would gradually get better over time and, as a diagnostic, that was the reason for delaying shot #5.   He said it would have been a long time until he would have suspected the supplements and I was fortunate to have made this consideration and subsequent test.  It is interesting that I noted the sensitivity to the Multi-Minerals and Vitamin C, and possible ties to fruits, prior to any EPD treatments.  We decided to continue with shot #5.  However, this trip I will do the Nizoral and Bismuth gut prep but skip all other supplements and see if the results are more favorable.

A week prior to shot #5 I again got another sore throat that appeared to be headed into a sinus infection.  The tree, grass, weed, and mold pollens are up and may be contributing to my downfall.  My EPD doctor gave me 5 days of antibiotics and I have apparently caught it quick enough that this short span has hopefully helped to get over the problem.  The length was limited due to the closeness of the EPD shot and critical days.

EPD Shot #5 - 6/20/97

Again I strictly followed the protocol.  Again I saw a negative response about 20-30 days after the EPD shot.  This response was slightly worse than the previous shot but still not nearly as bad as shot #2.  

In the long term I think dropping the supplements certainly didn't hurt  my case so they will not be used again through shot #6.  I've noticed some ups and downs with my fatigue and brain fag after 30 days which may be related to molds and air pollution (but I'm unsure of a direct tie).  During the critical 3 days I changed the routine slightly and went to work Thursday morning and took the afternoon and Friday off from work.  I had the shot late Friday afternoon.  Previously I had taken two full days off and had the shot Friday morning.  This may have been an impacting factor, I don't know.

I was recently reminded that negative reactions, though hard to take in the short term, are a sign that EPD will work in the end.  The people with no reactions, good or bad, are the ones who don't know if EPD will be useful.  That's the good news.  I also conversed with someone who didn't get favorable results until shot 10 or 11.  Now this gets me down - thinking of waiting for one of those to be the "magic" shot.  The consolation is that many people see results long before that. Then again, every turn I take with allergies I seem to be the unique one of the lot. 

Shot #6 will be administered with the usual dose.  I will avoid Buffalo on the critical 3 days, even though my doctor approves of it, and stick to rabbit stew.  Again I will take Thursday afternoon and Friday off of work and stay at home (except for the short trip out to get the shot).

EPD Shot #6 - 8/15/97

This shot was again another downer.  At 19 days I fell back to the bad level of shot #5 with my brain fog and fatigue.  I also noted at this time that I had a lot of muscle aches on getting out of bed in the morning.  The recovery appears that it may be getting slower from these low ebbs.  Perhaps  too, I'm just getting aggravated at the negative responses and wishing this was going better.  Again, I did not recover to pre-EPD levels nor to a level of positive response.

As I understand it, I'm getting the XE (includes foods in the mix), IC (inhalants mix), Terpenes, and Formaldehyde serums in the EPD shot.

I also correlated a number of other issues during this shot.  A sore formed on the inside of my lip, on the mucous membrane, near the gum line.  It lasted over a week and was followed by another.  I noted it's arrival 2 days after the shot.  I have had this occur in past shots but had not correlated it to the EPD cycle.

I also had a spot just behind my upper teeth, on the roof of my mouth, which got very sore.  I have in the past attributed this to burning my mouth on hot food during my EPD critical days.  In the past it went down in a week.  This time it arrived 2 days after the shot and was the size of a small pea.  I have a bit of an overbite and my lower teeth aggravated this condition for nearly 4 weeks.  Again I don't know if this is related to diet changes or to the EPD itself.  Before ever starting EPD these sores were rare to nonexistent.

On September 16, 1997, I spent about an hour with the doctor and his staff going over my whole history and course of treatment.  At this point we all agree that I am a problem case and unusual for the EPD normal and customary course of events.  Having bought and listened to the tapes of the July, 1997 EPD Doctors conference, I haven't a good idea on what makes me unique from the many people who are doing well.  The doctor is very concerned and, at the moment, perhaps they are groping a bit as well.

The doctor suspects the gut prep is responsible for stirring up a latent Herpes Simplex virus and producing the mouth sores.  What this means, I don't know.  I am still not taking any vitamins or supplements other than the Nizoral and Bismuth as a gut prep.  I recall having the mouth sores on shots prior to stopping the supplements (stopped before shot #5) so I don't consider the supplements a factor.

It was determined that I should continue with another shot.  A change will be made in that I will take the Nizoral for 10 days following the critical 3 days, in addition to my normal routine of Nizoral and Bismuth 10 days prior.  In the recent couple of shots I can also see some fatigue and brain fog recovery which may or may not be a result of starting the gut preparations for the next shot.  I really suspect the reduction of symptoms through this time is really just a continued recovery from the negative effects of the previous shot. The 10 days treatment post EPD may help determine if a post shot yeast growth is related to my problems.  It may also provide more clues to the mouth sores.

When I started the10 day preshot routine of Nizoral/Bismuth for shot #7, I noted sore spots on the tip of my tongue the day after the initial doses.  Those cleared by the time #7 was administered on 10/10/97.  I will watch for these sores again through the period.  Perhaps these are more signs and clues.

Another guess at my problem source is that I am being overdosed, though the reactions do not seem to follow a typical course of overdose events.  As I understand it, an overdose response is that each shot gets progressively worse.  I seem to be gaining ever so slightly from the worst of the depths.  I certainly haven't returned to the depths of shot #2. For that I am very greatful. Perhaps a dose level change is needed.  Even intradermal skin testing, done a few years ago, produced brain fog and fatigue within seconds to minutes of the injection and lasted well through the day. The skin showed minor sensitivity even though my system seemed to respond where it was unexpected.  Perhaps the skin response was a form of masking.  This testing would have been to pollens and molds.  Who knows, the doses of EPD may be stronger than my system can handle at the outset.

Shot #8 has been tentatively scheduled for 3 months.  The delay to another shot will help determine how I recover and if I swing to a favorable response just by waiting.  Another thought was that I'm getting the doses to close together, another form of overdose, and am getting sensitized.  Again, time may tell. We also reviewed some of my protocol and critical three days concerns but found no obvious problems.  

Another possibility is that I have undiagnosed gut problems.  I have not done any laboratory gut testing up to this point.  Perhaps some gut parasite, yeast, bacteria, or something that mimics one of these, was knocked down with the first shot and developed resistance subsequently so that it is causing problems.  With this statement I've about exceeded my research and medical knowledge and will have to count on my medical counselors to sort out these.

I also wonder about food sensitivities that are still very much hanging around.  I had an afternoon where I was feeling better than most and developed more brain fog and fatigue shortly after eating some Ritz crackers.  Another similar experience with plain oatmeal suggests a sensitivity that either has been masked by rotation or volume.  These were both about 5 to 6 weeks post #6.  This raised a concern that I use potato as a staple in my normal diet now as well as during the EPD critical 3 days.  Perhaps potato has been masked and is involved with either unmasking or additional hypersensitivity via EPD.  Perhaps I am still unmasking food problems and one of the next shots will take me around this corner.

As you may note, I'm groping for anything that might help turn around the EPD response that I see.  It is evident from the graphical charts I have kept of the whole EPD series, and the timing of the responses, that EPD is indeed having an effect on my system.  My strongest reactions to the shot appear fairly consistently between 19 and 23 days after the shot.  I do find it curious that shot #1 was favorable and the rest unfavorable.  I see no 24-36 hour post shot reactions nor delayed reactions in the post shot week as some people report.  In the first three post shot weeks I have, on a few days, noted that my sensitivities may go worse or better and that the yo-yo cycle may be as close as 15-30 minutes for a major swing.  The question is now to determine what is interfering with the main EPD action that happens at the end of 3 weeks.  One could guess, that if the interference is cleared, EPD has great potential for success for me.

My doctor will likely be having additional conversations with his resources on all of these issues.

And just for note, I started EPD, in part, as an attempt to avoid problems with a new building where I  was planned to work.  That was over a year ago.  As I sat at home in quarantine for shot #7, my desk was moving to the new building with 314,000 square feet of new paint, carpet, adhesives, concrete dust, plasterboard dust, and other building materials.  Ugh!

EPD Shot #7 - 10/10/97

The responses for this shot were different than the previous few.  So with this I don't know whether or not the planned 3 month delay between shots will tell much about the shot impact and recovery that we had hoped to review.  There are a number of factors which might have related to the differing response.  I did indeed do the 10 days post-shot Nizoral for the first time.  I also went to work at my new desk location in a new building on Monday after the shot.  Molds were heavy in the outdoor air in the weeks around the shot.   Perhaps the EPD shot also did have different effects at this time in the treatment program.

I had started the 3 day quarantine feeling a pretty low with fatigue and brain fog.  By the end of the 3rd day, Saturday the 11th, and Sunday morning the 12th, I felt somewhat better but not up to my pre-EPD #1 level.  I stayed in the house for the three days with the exception of going out for just over an hour to get the shot on Friday.  Sunday I did go to church but attempted to stay away from people and perfume by staying in the sound booth area (my normal Sunday post).  During the 3 day quarantine I ate crock pot rabbit stew consisting of rabbit, cabbage, carrots, celery, potatoes, tapioca, sea salt, and filtered water.  On Sunday it was the same except I used Buffalo instead of rabbit.

I noted in the previous section that I have observed mouth sores after beginning the pre-shot Nizoral and Bismuth.  The sores occurred again the day after the shot.  This would have been a couple of days after stopping the pre-shot Nyzoral and Bismuth.  The sores had formed on my cheek before starting the post-shot Nizoral.  Another sore spot formed on the side of my tongue and on my cheek about 2 and a half weeks post shot.  These were about a week post Nizoral.  I don't know what to make of these.  They seem to heal in about a week after appearing.

Through the week after the shot I attempted to eat things to which I suspected no reaction as per the EPD protocol.  By mid week my brain fog and fatigue were worse than pre-shot #7 levels.  By the end of the week and through the end of week 3 (day 22) I found that these problems were, in part, related to food intake.  Everything I ate bothered me within minutes to hours of eating.  Saturday, a week post shot, my family went to a restaurant to eat. I didn't go out of my usual bounds for that restaurant  but still felt so light headed that I didn't dare drive home.  Continued experiments, often with a bit under the tongue, showed that I was sensitive to all foods used during the quarantine, foods I thought were fairly safe, and anything else I tried, with the exception of eggs and  having a slight response to buffalo.  I tried 3 different versions of crock pot stew, each having at least 9 different items.  Each of the versions included no items of the other stews.  A few bites showed sensitivity in all cases.  I ate the stew for all meals for each of those three days anyway just to have something to eat.  Around day 22 these sensitivities reversed themselves and I was back to pre-#7 levels of food sensitivity as best I could tell.

I'm sure that judging the food problems was compounded by the new work site problems.  On Monday, after the shot, I went to work in the new building.  Concrete dust, drywall dust, and carpet fumes are things I have not taken well previously nor during this exposure.  Construction work continues.  These may have impacted my food intolerance as well - due to the additional load.  After day 23 the carpet fumes seemed to have become an increased sensitivity producing brain fog and starting a scratchy throat within an hour or so of entering the building.  I bought an air purifier with granular charcoal (not the foam charcoal kind) for my desk.  This small unit surely can't deal with the large office area so I have only seen a little help when it is blowing into my face.  Unfortunately the moving air also dries my nasal passages and eyes.

As I write this part of this installment on 11/12/97, it's only been 2 weekly cycles since day 23.  I wonder if my foods may have seen some benefit if it had not been for the overload of chemical fumes in this period.  I don't think I have had quite the "blue Monday" syndrome following a weekend of diet change.  Then again, I'm already beat down quite a ways and may see the syndrome if I had started from a better initial level.  As the week progresses, and I spend more time in the new building environment, my fatigue and brain fog tends to increase from the exposures.

I guess the bottom line is that I now have more exposure problems to deal with (the reason I started EPD over a year ago) and have not yet seen significant turn-around as a result of EPD.

As of 2/6/98, it has been fortunate that the new building air handling has been adjusted back in December.  This helped my building problems with more fresh air in the previously very stale room.  The air purifier is now more hassle than benefit.

My doctor has taken my request to have my case reviewed by other doctors.  As a result we put off the shot so that it was a 4 month break.  I will not eat potatoes during the critical 3 days since many people note problems of sensitivity and I may be one.  In fact I will attempt to avoid them for the 2 weeks around the shot.  It's also a thought that I may be allergically sensitive to Candida, with or without an actual overgrowth.  If this is the case, then what I am seeing may be the effects of unmasking to yeast or bacteria in my body.   We changed the pre-shot attack on yeast and bacteria (bacteria is perhaps related to my early sinus infection story which were treatable with antibiotics).  

Three days of a "dot" dose of Nystatin produced sore blisters on my tongue.  Three days of 2 "dot" doses made them unbearable.  Three days off no dose helped them retreat slightly.  Three days of single "dots" were as before, and led into my other gut preps.  Adding Sporanox and Doxycycline had the sores almost gone after 3 days.  By 6 days they were completely nonexistent.  Nystatin at 2 "dots" per day showed no return of sores with Sporanox and Doxycycline.  

EPD Shot #8 - 2/6/98

Aside from the curious pre-shot gut routine, this shot didn't do much.  I had some up and down days with fatigue and brain fog in the post shot three weeks.  After about day 23 it all settled down to no gains and no losses - I still had the pre-shot brain fog and fatigue.  Avoiding potato didn't seem to have any effect.  Re-introduction of potato didn't have any obvious affect.  I may have gained a bit of sensitivity to wheat, oats, and raw cabbage.  At my 6 week checkup, my doctor said he didn't know where to go next.  Shot #9 will be postponed until we define some new approaches.

My doctor apparently is not well versed in the gut analysis for parasites, bacteria, Candida, yeast, and such.  Having not done any gut related testing, I suggested it's time we got serious and see what might actually be interfering from this angle.  For lack of a better solution, his office worked on some education to determine what tests should be performed.  Discussions on the EPD Mailing List suggest that EPD failures are very often related to gut problems.  After all of these shots, I think it's time to try some analysis even if the tests are not 100% reliable in finding the problems.  The pre-shot routine experienced with shot #8, along with the seeming failure of EPD, seems to me to suggest that there is some curiosity in this area that ought to be explored.

While in the cycle of education and waiting for test results, I tried a number of things on my own.   A number of these things were tried for periods of about 2 weeks.  At EPD +6 weeks, doing probiotics containing Lactobacillus and Bifidobacterium showed nothing.  Adding Nystatin dot doses did not seem to cause mouth problems as just before the shot.  No gains no losses at this time either.   Perhaps something is getting deactivated by the shot?  Curious.  Adding Grapefruit Seed extract produced no gains and no losses.  Adding the probiotic showed no gains and no losses.  As time progressed, after about EPD +10 weeks, I realized I was slowly losing ground from the poor response position of this shot as seen around weeks +3 and 4.   I started looking for ideas to recover from the increasing fatigue.   Adding FOS showed no changes either (supposed to help nurture favorable bacteria but also feeds some unfavorable).  Doing Co-Enzyme Q10 alone showed nothing.  I would have thought I could have stirred up some kind of response, good or bad, aiding or killing a parasite, bacteria, or whatever, with something among these.  Very curious to my mind.

Knowing that I have always had a low body temperature I started keeping a diary.  In bed early morning temperatures with a digital thermometer indicated around 97.0 to 97.2 degrees by mouth on a pretty regular basis.  Daytime temperatures were often seen around 97.6.  My range has been as low as 96.3 and high as 98.2.  Fatigue and brain fog levels somewhat follow the temperatures with low readings being the worst symptoms.  The Co-Enzyme Q10 showed no changes in temperature or fatigue.  Kelp (Iodine source) for Hypothyroid conditions, Molybdenum, and Garlic were tried and produced no apparent changes.  A subsequent blood test, including thyroid panel, reportedly showed no abnormal conditions.

So, in an effort to check my gut, we did two stool tests.  The first, a Comprehensive Digestive Stool Analysis and Comprehensive Parasitology (CDSA) test by Great Smokies Diagnostic Laboratory.  The second test was another stool test (IPD) for parasites by the Institute for Parasitic Diseases.  I had to lay off my experiments for a couple of weeks to prep for the tests and not influence them.  Samples were taken when I felt pretty bad.  The test results were as follows.

Digestion - Triglycerides, Chromotrypsin, Valerate, iso-Butyrate, all appears to be in the normal range.

Absorption - long chain fatty acids, cholesterol, fecal fats appear normal. Short chain fatty acids are decreased. GS suggests this may be due to insufficient normal colonic flora, a diet low in fiber, or prolonged transit time.

Metabolic - Butyrate is depressed and is a most important short chain fatty acid.

Macroscopic - hidden blood was detected indicating possible bleeding or inflamation within the intestinal tract. Additional tests may need to be run.

Immunology - Secretory IgA is low. This acts as the first line of immunological defense in the intestines. Low levels are associated with higher risk of parasites and bacterial infection, also with foods crossing the intestinal linings.

Microbiology - Bifidobacteria and E. Coli are normal. Lactobacilli is expected but was found at zero and needs to be re-established.  Unexpected bacteria were found of Gamma Strep (2+, normal range reading) and Pseudomonas Aeruginosa (1+, imbalanced range reading).

Dysbiosis Index - A mathematical calculation of some of the above measured values. Shows moderate (towards severe) elevated levels.

Parasitology - no ova/parasites seen. Giardia antigen, Cryptosporidium antigen, Entamoeba histolytica antigen all found negative. No problems found.

My tests back from IPD:  On a range of 0 (negative) to 4 (very heavy presence) I had:  1 Candida, 2 Undigested tissue - beans, 3 Bacteria (normal bacilli) (a favorable finding), and none others of their extensive parasite list were found in this random sample of one.

I tried another few weeks of Klare Laboratories Vital Life brand Vital-Plex to restore my missing Lactobacilli.  This was the newer "advanced" formula which included Lactobacillus rhamnosus in addition to the Lactobacillus acidophilus.  A couple weeks of 1/4 teaspoon, once a day with food, again showed no changes.  When I added an evening dose on an empty stomach, I thought I saw a  very marginal but favorable brain and fatigue gain and did lose a few pounds which were gained 6 months earlier (Christmas holidays).  Since I tend to gain weight when my allergy problems act up, I noted this possible correlation.  With this small gain I decided to go to a higher powered probiotic by the name of Replete.  Two weeks proved beneficial and I backed down to the similar HMF-Forte that was a smaller, less expensive dose.  This seemed very useful against my fatigue and somewhat useful against my brain fog.  That is, until I experimented with Garlic and apparently killed all the gains.  Restarting the Replete didn't help until I stopped the Garlic.  Then I came back around with the gains and again dropped to the HMF-Forte.  I had tried the Garlic tablets again to see what response I could get against yeast and bacteria.

With thoughts of doing the next EPD shot without food for the critical three days, I tried a bit of Fructose and water as a test and it caused problems with increased brain fog and fatigue within an hour.   So much for Fructose.  The idea of no food is to allow the EPD shot to not sensitize to any of these items.  Next I  need to tried Glycerin and failed it as well with a sore thick throat.

By this time it was summer and I had sold and bought a house.    Some of the above experience was gained on top of the stress of changing homes.  EPD was postponed until I settled into the new environment.  Another second opinion was requested concerning the results of the gut tests.  This time we are going to take a shotgun blast with a number of parallel heavy duty anti-fungal preparations on the thoughts that I am fighting a resistant yeast or Candida problem.  The second opinion reply suggested that the stool tests didn't exactly point to bacteria problems so the next most likely candidate is the resistant yeast. So the multi-doctor agreed upon shotgun approach to resistant yeast included Sporanox, Diflucan, Amphotericin (orally), Nystatin (dot dose), Bismuth, and a histamine kick protocol of Tagamet.

By the time I got to the next shot, it will have been about 9 months.  If indeed I may have been experiencing overloads of the EPD, then this period length should be enough to also minimize that problem.

EPD Shot #9 - 10/16/98

The yeast shotgun was done 7 days pre-shot and 7 days post shot.  Having had to stop my antihistamines and decongestants due to the EPD protocol, I began getting serious congested sinuses in the week post EPD.  I did try a prescription for the suggested Tofranil for it's antihistamine qualities.  I suspect a few days of light headed feelings and dizziness were related to side effects of this prescription.  I guess that is better than the sinus infection I was headed for - based on my past histories.  I really didn't want to have to fight an infection in the three weeks post EPD so this was the alternative.

Overall, the shot resulted in no obvious net gains and no obvious net losses.  I may have pickled up some sensitivity to white potato and to the probiotics or their capsules.  Potato was used heavily during the shot period.  Many foods, and perhaps additives, still aggravate my fatigue and brain fog.

Once again we went off to find opinions on why EPD is failing.

Wilson's Syndrome Cycle #1 - 4/22/99

One of the discussions on the EPD Mailing List described Wilson's Syndrome, a hypothyroid set of conditions.  Many of the broad range of symptoms seemed to fit my case, albeit they could fit a lot of people.  Wilson's (the thyroid related Wilson's, there are others in medical references) is initially diagnosed as body temperature below normal and the patient having normal Thyroid gland test results.   Wilson's is, in effect, a Thyroid system problem and not a Thyroid gland problem.  With a match on quite a number of symptoms, and the thoughts that low body temperatures might have a negative effect on metabolism and enzyme functions (enzymes, as in EPD), I decided to find a doctor that was willing to try the treatment.  My Wilson's doctor was willing but was concerned that Candida or other parasites might be involved in the low body temperature.  I had done quite a bit of drug therapy to cover this possibility in the EPD cycles of late so we put this concern on the back burner.  With Wilson's protocol being defined somewhere around 1990, all of this is still a bit unknown and a bit controversial in the medical world.

In making the decision to do Wilson's treatments I took a lot of body temperature readings.  I noted that my waking temperatures had an outside range from about 95.4 to 98.1 degrees and  were very unsteady.  Measurements were taken with mercury thermometers by mouth.  At one point I had even seen my temperature rise through this full range in about 30 minutes.  Typical first morning temperatures were much more regular and fell into the range of about 97.2 to 97.6.  Temperatures can be raised with Wilson's treatments but I don't have a good feel if the unsteadyness can be affected.  My Wilson's doctor thinks that as the temperatures rise, the unsteadyness will get less.

So the first Wilson's cycle was started and incremented to maximum 90 mcg of T3 thyroid in time release form, twice a day.  No change in my vary unstable body temperature was noted.  No change in symptoms were noted.  The increments down from the max T3 level were started so another cycle could begin.  I guess the results so far would indicate that I am not a borderline Wilson's case or I would have seen body temperature increases or better control.  Additional cycles will be needed to decide if I am a difficult case or if we have missed the diagnosis.

During this period I also consulted with another EPD doctor.  My stool tests from a year ago did not show any obvious parasite to this doctor as well.  However, a couple of readings give a slight hint that something may be up that is otherwise not identified.  We discussed possible medications to do as trials that might impact something hidden.  In addition, he stated that I may be one of those rare cases for which EPD doesn't work.  Or, I may one of those cases where I get positive EPD results a year or so after stopping the treatments.  Basically we don't have a good handle on my apparent failure reasons.  He also had done some patients on Wilson's and had mixed results, some favorable, some that provided no relief.  At this point I will be working with my local EPD doctor and determining which avenues to further pursue based on this consultation and my Wilson's treatment status.

Wilson's Syndrome Cycle #2 - 6/10/99

The ramp up on cycle two was uneventful.  Again I saw no temperature control as I reached the top doses of T3.  After a consultation with my Wilson's doctor, I have started to wean back down.  We agreed to try another couple of cycles.

During this time I have been following the Wilson's Syndrome site forum.  A series of discussions implicated that, when failures of the Wilson's protocol are seen, the problem may often be related to poor adrenal functions.   Temperature unsteadiness may also be adrenal related.  From my notes on my recent EPD doctor consultation, an entry was made that questioned whether the adrenals might be implicated in my EPD failures.  I guess it's time to get an education on adrenal functions and their support.

Wilson's Syndrome Cycle #3 - 8/9/99

The ramp up on cycle three was again uneventful.  Perhaps a very slight worsening of symptoms during the ramp.  Again I saw no major temperature control as I reached the top doses of T3.  I think I can see is a bit more stability in my temperature swings.  The swings are tough to gauge since it has been a very hot summer and I tend to be a temperature chameleon (give me a hot rock in the sun and sometimes I can reach 98.6 with a good nap).  

Some members of the Wilson's discussion forum have stayed at various dose levels of T3 as an attempt to "break through the wall".  I decided it wouldn't hurt so stayed at 90 mcg twice daily of the time release T3 for a period of 3 weeks.  I've now started a ramp down to zero.  It was pointed that the Wilson's doctors manual charts allow a wean cycle to be one step per day if temperature regulation is not evident.  I am on the fast wean for this trip.

During this course I have been also experimenting with attempts to support the adrenals.  Licorice Root seems to bother my allergies and gives me a running sore throat.  Raw Adrenal supplements, from Enzymatic Therapy, appear to have no effect at one or two tablets per day.

I stayed on 90 mcg or T3 for a couple of weeks.  This had been mentioned on the Wilson's discussion group as possibly helping to break through the RT3 wall.  Since the effects of treatment were of little to no effect, this time I weened at 1 level per day.

As I was weening I was informed that I should expect a business trip to the middle east at the end of September.  I didn't want any hassle of T3 critical dose timing so decided to wait for cycle 4 until after the trip.  In the mean time my allergy doctor decided to do an Adrenal Stress Index (ASI) test.  This is the one that takes 4 saliva samples during a day and observes cortisal levels.  I avoided the required thyroid and adrenal supplements for 2 weeks and took the samples.  The results are due my way soon.

Again attempting use of Raw Adrenal extract supplements seemed to sometimes cause stomach aches on my attempt to restart.  I will be interested in my doctors comments on this whole issue.

I also took it upon myself to try a dose of Ivermectin, an anti-parasite drug.  It went through me like water.  No gains, no losses, no die-off symptoms.  I guess I don't have any nematode, insect, or acarine type parasites to treat.

In the end, my trip out of the country was cancelled, so I went on to cycle 4.

Wilson's Syndrome Cycle #4 - 10/12/99

I ramped up on cycle 4 of the Wilson's T3 therapy protocol.  Again I made the top dose 90mcg of time release T3 and didn't seem to affect my body temperature.  A visit to my Wilson's doctor only granted permission to go 4 to 6 cycles before needing to return.  He said he has seen a case where temperature regulation began to take effect at the 12th cycle and the patient found good steady temperatures near 98.6 on the 15th.  Rarely does the treatment go that long but we are willing to try unless I come up with some other wild hair brained treatment to chase.

During this time I also consulted with a guru of EPD.  The test for adrenal (Cortisol) function came back pretty normal.  It didn't include DHEA as I would have liked for conclusive evidence to confirm some concerns with the currently failing Wilson's.  The results of a Body-Bio test were a different story.  This test reviews many components of blood chemistry and showed many problems including Anion Gap, CO2, Calcium/Phosphorous ratio, Chloride, Lymphocyte count, Monocyte count, Sodium, Triglicerides, White Blood Cell count.  These were just the major hitters and I was surprised to learn the I should increase the intake of some of the few foods I currently eat. More surprisingly, at least against the common public wisdom, I need to increase my intake of salts and fats.  Included was a heart disease calculation that put me at less than half of the normal risk - a sign that things were out of whack so far that my system is passed being favorable in even this measurement. Additionally I need to supplement with a variety of minerals, fatty acids, and digestive compounds.  At the moment a difficulty is being seen in accessing the brand names of some of the items so I can be sure I start as directed. If improvements are seen I may change to more available brands but I want to be sure to follow the instructions out of the gate.

In any event, Wilson's cycle 4 has been tapered to zero and the supplement quest is underway.

Wilson's Syndrome Cycle #5 - 11/16/99

It does appear that I can get my body temperatures above 98.0 on some rare occasions which appear to only happen if I am up on high doses of T3 and also doing supplements of raw adrenal.  The supplements have been obtained and I've started some of them.  

Wilson's Syndrome Cycle #6 - 12/22/99

I've became plagued by sore throat and cold symptoms for about two weeks as I started this cycle.  In the possible event that there are elements of the supplements to which I am sensitive, I stopped all of the unknown supplements.  I will have to re-introduce the supplements at a later time and see if I note some that are a problem.  Another dose of Ivermectin seemed to produce no gains nor losses.  This will be my last Ivermectin attempt.  The couple of temperature readings above 98.0 during this cycle could have well been a fever related to the cold symptoms.  With widely varying schedules through the holidays, I will not attempt to begin another cycle until I get back into a routine where there is less chance of missing doses and missing taking temperature readings.

Wilson's Syndrome Cycle #7 - 1/28/00

No significant observations were noted during this cycle of time release T3.  Albeit I did have a few sporadic temperature readings at 98.0 degrees or above.  It still seems that relaxed state as opposed to intense activity, mental or physical, will provide higher temperature readings.

I have continued to re-introduce supplements.  My primary problem appears to be with the trace minerals.  Per the instructions I taste test them and they indicate favorable for use.  However, after 10 or 15 minutes I get spacey and a bit light headed as with some of my allergic symptoms.  A call to the source indicates they are created from an expected reasonably pure source of the mineral powder and mixed with distilled water from plastic jugs.  I don't know if I am picking up some response to the plastic or from some unknown other source.  So trace minerals from this source have not been included in my supplements at this time.  Otherwise, I see marginal, at best, improvements from the blood chemistry related supplements.

Wilson's Syndrome Cycle #8 - 3/3/00

No significant progress was made during this cycle.  I find that sitting on the floor leisurely reading the Sunday newspaper for an hour will raise my temperature to about 98.0.  That is, if I don't move from the floor until I've taken my temperature.  Similarly doing very light work at my desk at work.  However, deep concentration or a walk will lower my temperature readings.  This suggests possible adrenal gland issues per some research I've done (reference Dr. Bruce Rind web site).

Attempts to use Licorice root and raw adrenal supplements didn't seem to make any temperature difference.

Wilson's Syndrome Cycle #9 - 4/8/00

No significant progress was made during this cycle. Continued various supplements to no avail.

Above, at EPD Shot #8, a stool test showed that Pseudomonas Aeruginosa was present in my body.  The docs at that time didn't seem to concerned.  I recently found a reference that Pseudomonas Aeruginosa is a common sinus infection.  This makes me wonder if I may have a 20 year sinus infection that has been miss-diagnosed.

Wilson's Syndrome Cycle #10 - 6/24/00

No significant progress was made during this cycle.  This time, contrary to recent cycles, I did 2 days or more per T3 dose.  I had noted that it is easier for me to lose weight while on the upper T3 doses and decided to take advantage of this.  However, I again gained back the weight after weaning from the T3.

With a visit to my Wilson's doctor we decided that the T3 treatment was going nowhere.  At a loss on what to do next, we decided to re-do the saliva test for adrenal stress index (ASI), this time with the DHEA reading included.  If this didn't show anything then I would be off looking for other issues which could cause low body temperature and/or allergy sensitivity.  One thought was to review the sinus issues for potential long term infections.  A CT Scan may be ordered to check sinus passages and ducts and look for infection (reference Dr. Wellington S. Tichenor web site).

Attempting A New Diagnosis #1 - 9/13/00

The CT scan came back with a noted mild Deviated Setum (doesn't everyone have a bit of a crooked nose?).  No surgery was prescribed.  Also noted were mild mucosal thickening in the Frontal, Maxillary and Ethmoid sinuses.  No serious problems were seen.  This was interesting since I was fairly congested at the time I went through the scan.  No treatment plan was obvious save perhaps allergies.  Allergies and allergy treatment failures got me to this point in the first place so this appears to be a dead end.  I had been wondering if the diagnosis might find some closed cavities or evidence of fungal activity - but apparently not.

The Adrenal Stress Test and Testorone level came back and showed my Adrenal function under fatigue and approaching failure.  Cortisol was elevated at 8am, very depressed at noon and 5pm, and normal (should be low) at night.  DHEA was borderline low.  Based on the lack of success with Wilson's and the unstable low body temperatures recorded during that effort, the ASI confirmed the adrenal stress.

According to my doctor, the ASI result would then expect to show Testosterone hormone also low but indeed it was above the high end of the range.  So once again I have another doctor who says I am a strange case.

Attempting A New Diagnosis #2 - 11/14/00

I went off to a practitioner that uses electrodermal stress test equipment by Biomeridian to determine stress responses on body systems via acupuncture points.  Two visits have been completed but I've not noted any significant changes in symptoms.  The electrodermal technician made an interesting comment on possible candida infestations.  Brain fog is often due to candida that has gone systemic and lodged in the brain.  Many of the anti-fungal drugs I've had don't leave the gut or don't make it systemically to the brain.  About the only way to treat candida produced brain fog is via homeopathic remedies.

A dark field "live blood" observation showed signs of fungus activity in the forms of fibrin and spicules.  Also seen were some tear drop shaped red blood cells with a string tail that indicates improper protein digestion.

My Wilson's doctor is familiar with the electrodermal printouts and called me a "toxic waste dump".  He said I will be slow to respond and likely take a year of the specified supplements and homeopathic remedies for significant progress.  I paid him as a second opinion for his office visit so he has no monetary gain from his review other than an office visit that I prompted.

I am still concerned about Lyme Disease possibility.  It seems now that 3 people on the EPD Mailing List have EPD failures and subsequently turned up with Lyme.  The symptoms for long term Lyme (not short  term and not a bulls-eye rash) do seem to correlate with my symptoms.  The EPD list is about 230 members at this time, ranging from the curious to EPD failures.  Three Lyme people among the failures subset of the List would seem to be very significant.  My 3 specimen LUAT test (by urine sample) is headed to IGenex for analysis.

Interestingly, for the Lyme test, a course of Biaxin antibiotic was given to shake loose some of the Lyme and increase the test reliability.  On the second day I came down with post nasal drainage and a sore throat.  I suspect the antibiotic is either shaking something else loose or I am somewhat sensitive to it as an allergy.  On day 5 I was blowing yellow-green nasal discharge for a day.  Perhaps I simply caught a cold, but I do find the timing curious.  My sinus infections often seem to start with the congestion and then get worse when I can't keep the passages flowing.

Lyme Disease #1 - 12/1/00

A new twist to my allergies and health. The results came back from an IgeneX LUAT Lyme Disease test I took and 3 of 3 samples were positive. A score above 32 is a positive and I had, 84, 84, and 111. A score above 35 is something like a 99% reliable score.   Makes me wonder if this is the 30 year old monkey on my 45 year old back.

If I have this figured right, I am now the 4th person on this EPD List to have discovered Lyme in recent months. Have we all been on EPD? Hmmm...a trend among EPD failures?

Somebody asked about if my currents symptoms are very much in line with Lyme.  Well that seems to depend on what texts I read as to what are typical Lyme symptoms. The clincher was my stiff, cracking neck! I have for many years figured it was due to a water skiing wipeout over fifteen years ago. Then other things started clicking too close to home after a mailing list member mentioned to look specifically at long term Lyme conditions. I don't match and can't recall having seen the short term tick/rash stuff. Some of these things I've written off previously to allergies or other sources and didn't pay attention too. So I am currently: stiff neck with creeks and cracks, lots of allergies, low body temps (Wilson's treatments failed), adrenal function near exhaustion or failure, body temperature that drops with exercise, brain fog getting worse, continuing fatigue, sinus problems and much drainage (my original problems back in the 1970's), ringing in the ears, occasional eye focus problems on bad days, inability to remember peoples names, must write down things to cover short term memory, flipping letters when keyboard typing is worse on bad days, require 8.5 hours of sleep per night and still not rested on awaking, minor loss of sleep produces bad days for 3 or 4, constant very low headache/ thick head feeling that would get worse with food exposures, anal itch (related?), bumping into corners when walking (on very bad days), worse handwriting on bad days, ears pop when chewing, occasional jaw pain when sinuses are bad.

Yes, I'd hate to think where I'd be today if I hadn't spent the last 15 years trying to control allergies. I decided a long time ago that I had to do the best I could and stick to the research of new approaches and possible fundamental factors. Part of this is driven by the number of doctors who have told me I am a puzzle. If I am to find an answer, it will be me that gets on the right road in the first place. I've been on quite a few roads that were not the answer but led to another road. Sometimes I think it's a big maze with no destination.

One day I learned that you can always get out of a maze by putting your hand on a wall. Keep walking forward and never ever lift your hand. The course may be long. You may visit every turn. You may visit every dead end with your hand on one wall going in and on the other wall coming out. But the wall will eventually come to the exit. I've been in this health maze long enough to realize I'm now in a new section. I don't yet recognize it as an exit but I'm still betting there is an exit somewhere ahead.

Lyme Disease #2 - 12/14/00

My doctor is unwilling to do long term antibiotics to treat long term Lyme. He agrees that a short term of antibiotics will not be effective against long term Lyme. With persuasion, he agreed to go a few rounds of Flagyl which has been seen effective, per my Internet study, against Lyme though it is not a common treatment approach. His approach is to knock down the Lyme and then continue on longer terms using homeopathics. I then went to a Electrodermal Test technician who provided Lyme and Lyme related homeopathic remedies.  Based on tests with the electrodermal stress tester, the Flagyl is expected to severely hit my sinus problems and make them worse.  We added homeopathic remedies to help reduce this anticipated die-off problem.  Flagyl against Lyme is known to produce such die-off or Herxheimer reactions so I wished to attempt to reduce them as they are apparently seen during the first week and again at the fourth week.

Lyme Disease #3 - 1/25/01

I have had ups and downs with the Flagyl.  At best, sinus and brain fog symptoms are marginally better.  My Electrodermal technician has continued with the focus on Lyme.  This practitioner thinks my possible Candida is actually better at the recent visit.

Lyme Disease #4 - 3/19/01

 I tried some Ledum 1M homeopathic and didn't see any results.  Later I tried 30c and again didn't see any help against my symptoms.

In early February I started a six week course of Amoxicillin.  Increased sinus congestion resulted for a few days after the start.  Also after the termination, again increased sinus congestion resulted.  This time days 2 and 3 included congestion, post nasal drainage and sore throat.  Seems the antibiotics affect my system via the sinuses, both for starting and stopping.

Flagyl was in use with the Amoxicillin and will continue after.

The subsequent Electrodermal skin test by the technician indicated that the Lyme is waining.  Other body systems may have improved in function but also surfacing seems to a problem with Babesiosis, a common co-infection with Lyme.  I only wish I felt better to go along with the skin resistance readings that propose I am getting better.  The technician suggests that the Flagyl and Amoxicillin may be producing dead bugs and waste faster than my body organs can expel it.  Hence, one exit port may be the sinus and the resulting pain and fatigue.

Lyme Disease #5 - 5/1/01

I have continued the Flagyl until 4/16/01. In the weeks before that I had noticed some tingling and numbness in my toes. One of the side effects of Flagyl is reported to be peripheral neuropathy. At the time I stopped, the sensations were moderate intensity and almost continuous.  I was about a 4 on a scale of 0 to 10 where 10 is the worst of standing up after sitting and cutting off the blood circulation to a foot. I was afraid of progressing farther. The tingling and numbness continue now but at a bit less intensity. I will watch this over the next month and see if it diminishes.

On 4/28/01 I visited the technician for another round of EDS.  She thinks I am making progress but my self assessment is not as good as her chart. I think I’ve made some gains in the sinus area and am not using any anti-histamines, decongestants or nasal spray. I suspect I have made some small gains in brain fog and fatigue but I’m still hoping to do much better. The Lyme, Babesiosis, and Ehrlicia seem to be improving per her charts. She tested Flagyl and found this time that the nervous system viewed the Flagyl unfavorably. On the previous visit, Flagyl had been still favorable at all the points checked.

At this point I am doing no prescription medications. I will continue with the supplemental suggestions made by the EDS. Unless we come up with another plan, the next EDS visit may be a time to revisit my allergies.

Lyme Disease #6 - 6/12/01

 The tingling in my toes is now generally gone. However, some numbness occasionally is noted and a feeling of being cold. This feeling most often occurs when wearing shoes and my feet should not actually be cold. Certainly these are occurrences are less strong than the feelings at the point I quit the Flagyl.

On 6/11/01 I visited the technician for another round of EDS. The report is attached. It would appear the Lyme, Babesiosis, and Ehrlichia are resolved (or very close as Lyme did turn up at a low level and then disappear during the testing). The damp weather of the recent month has wreaked havoc with my sinuses, brain fog, and fatigue. We attempted to look at inhalants and food and couldn’t correlate to allergies. I found this very curious. Using the machine we dug as deep as we could to find balances for sinuses, brain fog, and fatigue.

If the Lyme and friends are gone then my sinus problems are apparently not related. This is a bit disappointing but in my case adds another data point. It appears the Lyme was resident but not active.

Muscle testing indicated we still need to be looking at the intestine for problems. Yet, the machine didn’t pinpoint something on which to work.

I’ve had thoughts of trying NAET, the acupuncture/acupressure allergy treatment. Muscle testing said not (at least for today).

Muscle testing did indicate favorable for JMT (Jeffe-Meller Technique, see: http://www.jmt-jafmeltechnique.com/) of intestinal and parasite clearing. I ran into JMT during some Internet research on NAET and at this point have no clue where I can find a near practitioner. JMT is another recent acupuncture/acupressure development and doesn’t require the restrictions of NAET. It is not intended for allergies though clearing parasites will often relieve the allergy symptoms per the reports.

My body temperature is still low and unstable. It will get up to 98.0 only with excessive amounts of rest, sleep, or inactivity. First morning, out of bed, readings continue to range between 97.4 and 97.7. All of this EDS effort doesn’t seem to have had an effect that I can tell. Curious on the thyroid/adrenal front but I guess something else is still out of balance that needs fixed.

I will continue with digestive enzymes and glandular supplements that the machine appears to like in an effort to balance the gut. I will add 12 hour Psuedephedrine over the counter decongestant tablets that I have used a lot in the past to help the sinus congestion and brain fog. The drops have been modified to help keep the liver cleared while using the tablets.

On my drive home I got to thinking that if inhalants and foods don’t correlate to allergies, then I wonder if we should take some of my problem foods and attempt to find what body system they are affecting. To bad I didn’t think of this while in the chair. I guess this will be something to look at in another month.

Lyme Disease #7 - 10/27/01

The tingling in my toes is still generally gone. However, some numbness occasionally is noted and a feeling of being cold. This feeling most often occurs when wearing shoes and my feet are somewhat cold. Certainly these are occurrences are still less strong than the feelings at the point I quit the Flagyl.

After skipping a few months, on 10/27/01 I went for another round of EDS.  It would appear that Lyme and Babesiosis is showing again. Ehrlichia remain resolved. The late summer molds played havoc with my sinuses, brain fog, and fatigue during late August and Early September. I specifically took a mix of known food allergens and did test balancing including these in the system. I don’t know if this will make a difference on my food symptoms or not. Muscle testing indicated molds are something I should attempt to remedy.

I have been having trouble learning to do self muscle testing. Doing some practice with the EDS practitioner showed my polarity to flip numerous times during the very short session. Radiation, perhaps from computer monitors, may be involved with this and we worked on methods of sustaining polarity. I’d certainly like to be able to learn and trust muscle testing of myself.

In this session muscle testing indicated possible gains could be had by NAET. I’ve not decided if I should find a practitioner. I will do more research on such treatments as they relate to my allergy or sensitivity loads. The practitioner has suggested one protocol to try but I need to get the muscle testing in better shape before counting on the approach.

My body temperature is still low and unstable. All of this EDS effort doesn’t seem to have had an effect that I can tell.

I will continue with digestive enzymes, Magnesium, and EDS specified drops. I will add a pH balancing supplement. I will continue 12 hour Psuedephedrine over the counter decongestant tablets that I have used for years to help the sinus congestion and brain fog.

 NAET #1 - 01/02

Over the holiday I decided to take the plunge with NAET (Nambudripad Allergy Elimination Technique), an acupressure (acupuncture based) treatment.  In January I have started the basic elements and have been cleared for Egg group, Vitamin C group, and Vitamin B group.  So far I have not had to treat for the Calcium group.  No symptom gains nor losses as best I can tell from the treatments.  The only possible effect I've noted at this point is a possible dropping of my first morning body temperature.  It often is around 97.7 degrees and now seems to be more often around 97.5.  I don't know if this is significant but it is curious.

 NAET #2 - 02/02

This month we had a cold day and deviated from the norm to treat Molds since they are a very big concern of mine.  The practitioner said she had heard about, but never before personally seen, someone with a double flipped polarity.  I don't understand all this implication other than Molds were confirmed as a serious allergy.  Molds, Yeast, Candida, Yogurt, Cheese, and sugar, were tested and cleared this month.

 NAET #3 - 03/02

 Iron, minerals, grains, and spice mix 1, were tested and cleared this month.

 NAET #4 - 04/02

 Vitamin A, salts, chlorides, spice mix 2, food colorings, food additives, weed pollens, pollens, grass, trees, were tested and cleared.  When clearing tomato, fruit, citrus, and bioflavenoid, only the bioflavenoid passed.  We again attempted to clear fruit, citrus and a real piece of grapefruit and my later challenge with grapefruit made my face red and hot just as before.  Looks like my fruit problem doesn't want to be cleared.  

Of the top NAET items, Milk/Calcium tests OK and Corn is the only other item not treated and is currently of "questionable" status.  As of this stage I would have hoped to see some positive gains from the treatments but I don't think NAET has been effective against my symptoms so far.  Certainly the fruits and grapefruit issue is something to sort out somehow since it relates to my ongoing symptoms and hasn't been cleared in 2 attempts.

 PEPTAGEN - 08/02

As I was noting the NAET problems with acids I heard that my allergy doc had a new trick.  Met with him and tried an immune system regulator injection named Peptagen AA.  Three shots over three months didn't seem all that astounding for my food sensitivity.  Seemed, perhaps, that is was easier to control or lose weight but I can't say that it did anything to my overall demeanor or reactions to known problem foods.  The 4th injection was of Peptagen F for fatigue instead of working directly towards foods.  At the last visit he also ordered thyroid, adrenal and hormone tests as well as provided a prescription for Amour Thyroid as a trial run.

Lyme Disease #8 - 7/04

Peptagen is no longer available, per my doctor.  My trial of Armour Thyroid didn't help, in fact, it sapped energy from me.  So I gave up my quest for a while and settled into routines that seemed to keep me going.

This year I decided it was time to again run the IgeneX Lyme Disease Tests.  The test I previously did was no longer available so I opted for the Lyme Dot Blot 3 sample test and came up negative.  Their Multiplex-B Genomic test was negative.  But, their Multiplex-B Plasmid test was positive.

When I took these results to my family doctor he ordered a ELISA test and it was negative.  Some internet research sources suggest ELISA may not be very reliable in long term Lyme cases.

So this all results in putting me back in this quandary - is Lyme something to go chasing after at this point?  For lack of some other path, it's time to restart my quest.

 Lyme Disease #9 - 9/22/04

I did more research and found a recommended doc experienced in Lyme treatment that was a 5 hour drive away.  He had a big battery of blood work done before my first visit.  The blood work ruled out a large repertoire of possible other conditions.  Based on these results, on the results of my IgeneX Lyme tests from 2000 and 2004, and my reported symptoms (including allergies), he will begin treating for Lyme.

This doc doesn't rule out the alternative treatment possibilities but also doesn't think enough pure science is available to trust them completely.  He will be prescribing various antibiotics until we find one that will attack whatever version of the Lyme bug I happen to have.  In his understanding, there are many (over 300) Lyme variations and/or mutations and not all respond to any given antibiotic.  He also said that my previous round of Flagyl by itself will only attack one part of the Lyme life cycle and not other parts.  Flagyl, by itself, is therefore ineffective.

It looks like I'm starting down another path in my quest.

 Lyme Disease #10 - 10/20/04

This month the doc thought I should have gotten more favorable response than I did from the Amoxicillin.  On Amoxicillin I had 4-5 days of what was likely the Herxheimer reaction (die-off of something) where I was very fatigued.  The rest of the month I felt more tired than usual and had more leg and foot fatigue.  I also had more "crunchy" neck symptoms.  So we will switch to another antibiotic, Omnicef, and try a month.

 Lyme Disease #11 - 11/17/04

No gains and no losses using the Omnicef.  I did have a valley in the middle of the period where I got sores on my tongue and throat.  I realized I was not taking the acidophilus per the schedule and the white tongue indicated a yeast growth.  Increasing the B vitimins and acidophilus had the issue under control within a couple of days.  I will do better with the supplements from here on.  So the Omnicef was apparently ineffective on it's own and for the next month we will add Flagyl.  Flagyl is supposed to attack the Lyme hidden form buried inside of cells while the Omnicef will attack the spirochete form outside.

 Lyme Disease #12 - 12/22/04

No obvious gains nor losses to report.  I continued to be fatigued for the whole period.  Perhaps the fatigue is due to the Omnicef.  This period we will try a combination of Biaxin and Flagyl.  Within a day of the transition I was in better spirits and had less fatigue.  I hope this continues.

 Lyme Disease #13 - 1/17/05

Biaxin and Flagyl certainly produced less fatigue for the period.  I have been on Flagyl now for a couple of months.  In my previous exposure to Flagyl long term I ended up with tingling in my toes.  So we will do Biaxin and Levequin this month. 

Blood tests since September have now gotten to the point that Creatinine and BUN (Blood Urea Nitrogen) are out of limits.  Creatinine has risen to 1.8 (reference range 0.5 - 1.4) and the BUN to 37 (reference range 3 - 29).  I will be seeing a local doctor about this Kidney related concern.  I wonder if the antibiotics or the high power vitamins are related to this problem.

 Lyme Disease #14 - 2/18/05

The last period, on Biaxin and Levequin, was 2 weeks of baby steps forward and 2 weeks of retreat.  We will try Doxycycline and Levaquin this month.

My personal research indicates that the Creatinine and BUN levels can be affected by some antibiotics, some vitamins, high blood pressure, dehydration, and a high protein diet.  A 24 hour urine collection test seems to have confirmed the Creatinine level, though I don't have enough knowledge to read the test results.  Since the readings seem to have increased over the recent months, I'm guessing the first looks should be to the changes related to the Lyme treatments.  My Lyme doc said we have not used any antibiotic known to have these blood level effects.  I indeed have a higher than normal protein intake but this has been longer term.  The next most obvious, and easy thing to eliminate, are the high powered vitamins I started.  Those have now been stopped for 3 weeks prior to another blood test.  This blood test resulted in lesser elevations of Creatinine and BUN and were just barely above the upper reference range limit.

I see the Kidney specialist at the end of February.

 Lyme Disease #15 - 3/21/05

The kidney specialist says that my Kidney function is normal even with the elevated BUN and Cratinine showing in the blood tests.  The levels are related to high protein diet, kidney processing of antibiotics, kidney processing of vitamins (now stopped), possible dehydration.  Weeks later, another set of tests were be run for confirmation and again showed elevated BUN and Creatinine but no Kidney damge.  The Kidney doc discharged me pending reasonable outcome of an Ultrasound of the kidneys.

Doxycycline gave me increased fatigue, increased sinus congestion, increased brain fog, and my wife says increased snoring.  We dropped it this month for Ketek and kept the Levaquin.

 Lyme Disease #16 - 4/14/05

No problems were reported from the Kidney ultrasound test.  Ketek and Levaquin were certainly better then the Doxycycline of last month, but didn't seem to make any overall advances or declines.  Will do Ketek and Spectracef this month.

We are becoming concerned about elevated blood pressure.  I do have some "white coat syndrome" but even by myself on blood pressure machines I'm seeing some elevation.  I wonder if it may be connected to drinking extra water, and keeping those fluids.  The kidney doc had suggested drinking lots of water to help the kidneys flush out the wastes.

 Lyme Disease #17 - 5/23/05

I feel lost ground on the Ketek and Spectracef.  Increased fatigue and loss of concentration were noted.  In those regards, last month on the Levequin was better.  In the transition from Levequin to Spectracef I also noted that a fair amount of joint pain and pressure point pain, on morning awakening, went away.  I had not previously correlated those pains with Levequin.  My doc indicated that this family of antibiotics was known for producing joint pain.  It took about 3 days after the transition for the pains to clear.

A few days after starting the Spectracef (with the Ketek continued), I noted a shower temperature sensitive area on the right side of my stomach.  There was a very slight rash which ended up being about 9 inches across.  In the course of ten days it progressed from being noticed, to a touch or heat sensitive area, to a moderate itch, and then cleared.  My doc suggests that the center may have been the original tick bite or Lyme entry location.  The antibiotic likely produced a Herxheimer reaction in the original entry area.

My Creatinine level was up to 1.8 (reference range top is 1.4), so this was out of range.  The Kidney doc report indicated that my diet was significant to this level and that no other concerns with Kidneys or systems were noted.  If the Kidney doc was not concerned then the Lyme doc saw no reason for further alarm.

Before seeing the Lyme doc I had worked in the yard a couple of evenings and had developed a serious sinus event.  For me the congestion and drainage produced by this event would lead to a sinus infection in, say, 95% of such cases.  I was certainly on the verge so picking the next antibiotic was needed to also cover any possible sinus issues.  With the Spectracef I may have had a Herx but I felt worse and worse through the period.  We decided to try another from the family of Levequin and hope this one didn't produce the reaction of joint pain.  So this period I will be on Ketek and Avelox.

 Lyme Disease #18 - 6/23/05

The first pill of Avalox produced dizziness beyond anything I had ever taken.  There was a warning with the drug but I wasn't ready when it hit.  I was so dizzy I couldn't trust myself to drive back home from work.  Walking around seemed to help and fortunately I was stable on my feet though I didn't feel like it.  The second day pill was just about as bad.  So I figured if dizziness was to continue, I would take the pill at night and at least be laying in bed asleep during the worst.  Daytimes for about three weeks still had some sense of disorientation and slight dizziness. By the fourth week I had settled in but still was not happy.

Ketek and Avelox didn't seem to help my allergy symptoms.  They didn't hurt my energy level much nor my ambition.  The disorientation though was a problem.  So Avelox will be dropped for another drug of the same family, Tequin.

 Lyme Disease #19 - 7/25/05

Avelox wasn't to bad.  Some tired legs for about 2 weeks.  Slightly sore knee joints the whole period.  Some brain fatigue the whole period.

We will do Ketek and Cefuroxime Axetil this month.

 Lyme Disease #20 - 8/18/05

I took the antibiotics for the first week and developed a pain upon urination at the final 1/2 inch of my urinary tract.  The pain was 95% resolved after stopping the antibiotics for 24 hours.  I restarted and had some intermittent moderate flairs.  We don't quite know what to think of this.  Otherwise Ketek and Cefuroxime Axetil produced no gains nor losses.

Ketek and Tindamax will be prescribed for the next period.

 Lyme Disease #21 - 9/19/05

No gains, no losses - this time.  I will use Ketek and Tindamax until I run out of the Ketek.  Then will try Cedax and Tindamax.

 Lyme Disease #22 - 10/12/05

I finished my Ketek and then did 7 days of Cedax along with Tindamax.  Some increase in sinus congestion but that may be seasonal instead of antibiotic related.  This month will be Cedax and Tindamax.

 Lyme Disease #23 - 11/12/05

The sinus problems increased while I continued Cedax and Tindamax.  In the second week of this period the sore throat got bad enough I went to my local family doctor.  We stopped Tindamax for a 5 day run of Zithromax which was to cover the bugs in my throat and chest.  The sinus and throat improved and I went back on the Tindamax (along with continuing Cedax).  At the end of the period I noted a return of the "creaky neck" which I hadn't realized had left me sometime earlier.  My overall general condition seemed a bit less than earlier.  Next period we will do Cedax along with Bactrim.

 Lyme Disease #24 - 12/5/05

With Cedax and Bactrim I had another round of sore throat a week into the period.  This time I stopped all antibiotics and went heavy with Acidophilus and Colostrum.  In 5 days I was back to normal.  The Lyme doc thinks this may be yeast infections with the response.  Otherwise no gains, no losses.  This period we will try Biaxin and Bactrim.  According to my notes, Biaxin was the antibiotic in use when I took the Igenex test back in 2000 that produced high positive results.

 Lyme Disease #25 - 1/12/06

No gains, no losses, this period.  Next we will try Biaxin and Vantin.

 Lyme Disease #26 - 2/6/06

I ended up with a very sore jaw on Biaxin and Vantin.  A previously scheduled trip to the dentist happened during the session and the dentist thought my "clicking" jaw was a result of stress and teeth clenching, typically done at night.  Yes, I have had some added stress in my life of late.  However, after being off of the antibiotics for a week I the jaw issue was slightly better and I tried the antibiotics again.  This time within a day I could almost not eat due to the pain of jaw motion.  After a couple of days I stopped the drugs and the pain again subsided.  I still had some jaw "clicking".

Next I will be doing Biaxin and Amoxicillin.

 Lyme Disease #27 - 3/6/06

No gain, no losses on Biaxin and Amoxicillin.  Will try Biaxin and Omnicef.

 Lyme Disease #28 - 4/3/06

No gain, no losses on Biaxin and Omnicef.  Try Omnicef and Tindamax.

 Lyme Disease #29 - 5/16/06

15 days on Tindamax and Omnicef.  15 days off while I went to China on a business trip.  13 days back on.  I returned from China with a Sinus infection well underway that the second round seemed to clear.  Otherwise, no gain, no loss.  Will try Azithromycin and Tindamax.

 Lyme Disease #30 - 6/12/06

Azithromycin and Tindamax produced no gains, no losses.  Try Levaquin and Tindamax.

 Lyme Disease #31 - 7/17/06

1 Month of Levaquin and Tindamax produced no gain, no losses.  This was a 5 week period where my insurance changed so I did not refill the prescriptions.  1 week off anitibiotics produced no gains, no losses.  Next Tindamax and Ketek.

 Lyme Disease #32 - 8/15/06

No gains, no losses, on Tindamax and Ketek.  Next Ketek and Cedax.

  Lyme Disease #33 - 9/13/06

No gains, no losses, on 2 weeks of Ketek and Cedax.  Took a break for 2 weeks with no gains, no losses.  Next Cedax and Doxycycline.

Lyme Disease #34 - 10/11/06

Slight increase of fatigue, sinus congestion, and brain fog on Cedax and Doxycycline.  Next Cedax and Clindamycin.

Lyme Disease #35 - 11/16/06

Cedax and Clidamycin produced no gains, no losses.  Clindamycin and Amoxicillin next.

Lyme Disease #36 - 12/4/06

Clindamycin and Amoxicillin, no gains, no losses.  Clindamycin and Omnicef  next.

Lyme Disease #37 - 2/5/07  

Clindamycin and Omnicef, no gains, no losses in December.   My travel schedule made me cancel a January visit and I didn't do antibiotics.  Amoxicillin and Biaxin next - however this is a change of both antibiotics and a combination I had a year ago.

Lyme Disease #38 - 3/5/07

Clarithromycin (Biaxin) and Amoxicillin were used.  This is one change from #36 above.  The first week was very increased sinus problems with lots of post nasal drainage and a mild sore throat.  After a week I stopped for 4 days and only go very minor relief.  Went back on the drugs and continued with very slow recovery.  Stopped again for the last week of the month.  At the end of the month I was close to my normal.  The doctor said the Amoxicillin is currently a lab derivative but originally was a mold related source.  We wonder if the generic may have some real mold relatives and that tweaked my allergies.  The symptoms were likely not a Herxheimer (die-off) reaction as I should have gotten much better after the second week.  Blood pressure 120/70.  Next we try Biaxin and Bactrim.  

Lyme Disease #39 - 4/5/07

Biaxin and Bactrim provided no gains/no losses.  Blood pressure 120/70.  Next Bactrim and Diflucan.

Lyme Disease #40 - 4/30/07

Bactrim and Diflucan provided no gains/losses.  Blood pressure 120/70.   Next Ceftin and Diflucan.

Lyme Disease #41 - 6/25/07

Ceftin and Diflucan provided no obvious gains/losses.  I did seem to have some increase in fatigue but attribute that to our drought and the rise in ground molds.  I did the drugs for 3.5 weeks but ended up missing the monthly appointment.  So the second month I did no drugs and continued with the fatigue as the ground molds increased. Blood pressure 120/70, pulse 72.

The doc wants another attack path as I've covered all of the major antibiotic families.  This time we will try an anti-viral.  He has some difficult patients that have responded.  One month of Valtrex next.

Lyme Disease #42 - 8/8/07

Almost one month of Valtrex produced no gains, no losses.  Perhaps some additional sinus congestion.  The doctor admits to be running out of ideas.   Blood pressure 120/70, pulse 80.  Next Diflucan and Tindamax.

Lyme Disease #43 - 9/4/07

Started Diflucan and Tindamax and within a few days developed mouth sores.  Stopped both 2 days and increased the probiotics.  Then realized that if this was thrush, or a yeast overgrowth, that Diflucan could actually help.  Did Diflucan for 2 days with increased probiotics and the sores were about clear.  Went back on the Tindamax and kept the probiotics high (I had changed brands of acidophilus mix and this one may not have been as strong).  Mouth sores were mostly gone, though I was on the edge for the rest of the period.  Otherwise no gains, slightly more fatigue, and very slightly dizzy or disoriented on this combination.

The doc is starting to run out of combinations of antibiotic classes and asked me if I had any thoughts or suggestions.  My notes indicated that we might retry Tindamax and Biaxin though it was likely a long shot.  Also, the first Igenix test, with Biaxin, produced very significant Lyme response.  I also wondered if another iGenix test was in order to see if perhaps we had killed the Lyme along the way but I was left with residual sinus problems.  The doc suggested that with all of the antibiotics the Lyme may be pushed down far enough to no register on the test, albeit my system was still contaminated.  So next is Tindamax and Biaxin.

Lyme Disease #44 - 10/1/07

I went 1 week on vacation and then started the Tindamax and Biaxin.  One week was somewhat fatigued, and increased allergy symptoms.  The second week changed to be better than normal.  The third week settled back to normal.  Blood pressure 120/70 for the 6th month.  I suggested we stay on Tindamax and Biaxin another month just to watch my reactions.

Lyme Disease #45 - 10/29/07

No gains, No losses, with Tindamax and Biaxin.  Will try Biaxin and Flagyl again.

Lyme Disease #46 - 12/11/07

Week 1 on Biaxin and Flagyl was an improvement to my sinus and fatigue.  Then things went downhill.  At the end of the period I stopped for a week and the results stayed down.  So my seasonal allergies must have kicked in instead of being a result of the antibiotics.  The doc is concerned that we have almost nowhere to go next.  On a wild hair he decided to try an anti-malaria drug, Rifampin.

Lyme Disease #47 - 01/11/08

This was ugly.  I tried Rifampin for 9 days and could not stand the headache, disorientation, dizziness, and brain fog.  With 2 days off I felt better.  One day on was bad again.  I was traveling (driving) after Christmas so to 6 days off and got better.  Then I went back on again but had only slight symptoms.  So I wonder if the problems were a change of diet and timing (I was on vacation and doing Christmas shopping), a disagreement with the drugs, or a Herx reaction.  My doctor couldn't say.  Since I can't say I've had the flu-like Herx, this is about as close as I've come with all of these drugs.  So I reluctantly agreed to stay on the Rifampin to see if things got better or if we could note a cycle of good/bad that might relate to a Lyme cycle.

I initiated some other questions from my research.  One of which is my continuing sinus issues.  I wondered if the swelled closed sinus pockets could be a Lyme reservoir that is not accessible by systemic antibiotics.  The doc considered this a possibility and prescribed Nasonex spray to reduce the swelling and sinus symptoms.  Perhaps opening them up would be helpful.

Lyme Disease #48 - 02/09/08

I stayed on Riampin solidly through the month with minimal variations in the cycle.  I felt slightly below par.  Exiting the drug did not seem to cause any flair.  Last months issues must have been with the vacation, holiday, and diet changes bothering me.  Nasonex spray has helped the sinus swelling to some degree in the frontal area but does not seem to get to the deep sinuses as I had hoped.  The spray also triggers a brain fog for 0-3 hours which is not desired.

We discussed some research I found on the Internet with antibiotics and Diflucan but the drugs are not (yet) available in the USA.  I didn't turn up much else in the treatment area that was new to me. 

After a review of the doctor chart we decided we had not tried a combination of Amoxicillin and Doxycycline.  In previous uses of Doxycycline I experienced increased fatigue, congestion, and brain fog.  If this happens to be a Herx reaction I guess I will have to just try to push through it.

Lyme Disease #49 - 04/01/08

Two weeks on Amoxicillin and Doxycycline and I got sores in my mouth.  Two days off to get them to recover.  Two weeks on and again sores.  I went off and stayed off.  No other gains or losses.  I continued a month off with no gains or losses.  This was a 2 month period due to scheduling conflicts.

The doctor thinks he has his best chances with Amoxicillin and Doxycycline so we will try some more this month.

Lyme Disease #50 - 04/28/08

Three and a half weeks on Amoxicillin and Doxycycline.  My wife thinks I snore less and this was during peak tree pollen season (one of my few inhalant allergies).  I also did not respond after nights of cutting the grass.  However, I could not say my sinus congestion felt any better.  So this period was a minor gain at best.

I will go another month Amoxicillin and Doxycycline.

I asked about the Marshall Protocol of antibiotic treatments.  My doctor said he has one person for which it seems to work and four that have failed.

I asked about his definition of "pulsing".  His approach is to stop the antibiotics until a flare comes around and then do 2 weeks.

Lyme Disease #51 - 06/02/08

This month was a nasty sinus month.  I know that there is a tree allergy period in May that often bothers me - but this was very bad.  Did Amoxicillin and Doxycycline until 5 days before Memorial Day.  The sinuses were so bad I had to try anything and stopping was a choice.  I also knew I was working in the yard if the weather was good and Doxycycline has increased sunburn risk.  The sinuses eased up and did OK (not great) on the outdoor days where they could have worsened from trees.  I did a few more days antibiotics and had some increased sinus problems.

This month we will try Amoxicillin and Biaxin.

Lyme Disease #52 - 06/30/08

No gains, no losses this month.  I did have a sinus event with tremendous drainage at week 3.  I suspect a cold.  Stopped antibiotics (Amoxicillin and Biaxin) in the middle.  Next try Amoxicillin and Bactrim.

In this period I also visited an orthopedist about a crunching noise in my left knee.  This knee has had surgery in about 1980 and 1984 for bone chips, cartilage repair and ligament repair.  He decided that I was not in a position to do anything until the problems began to affect my lifestyle.  At this time there is little to no pain nor swelling.

Lyme Disease #53 - 07/29/08

Amoxicillin and Bactrim seemed to sap a little of my energy and that seemed to lift in the last 5 days of the period when I stopped them.  No other gains or losses.  Amoxicillin and Flagyl next.

During this period I also visited my long time Ear, Nose, Throat, and Allergy doc concerning snoring.  My wife is having to sleep in another room many nights do to the noise.  A sleep test was performed for sleep apnea.  I am awaiting the results.

Lyme Disease #54 - 09/2/08

I had a lot of sinus problems and fatigue this period.  I suspect it is due to ground molds and dust of a very dry month and not a result of Amoxicillin and Flagyl.  WIll try Amoxicillin and Bactrim next. 

One week into the period I noted I was taking half doses of Amoxicillin.  I don't know when I messed up with only one pill, instead of two, per dose time.  It's certainly been a while.  Argh!

I am scheduled to see a surgeon about corrections for the sleep apnea.  It seems the Uvula (dangly thing in the back of the throat) is enlarged and can obstruct air flow.

Lyme Disease #55 - 09/29/08

Amoxicillin and Bactrim did not seem to make any differences.  Late summer dust and molds are likely driving my increased sinus problems.  Will try Biaxin and Bactrim next.

The throat surgeon wants to reduce the size of my Uvula (dangly thing in the back of the throat).  Insurance wants to have CPAP machine trials and dental appliances attempted first.  Argh!

Lyme Disease #56 - 11/24/08

No gains nor losses on Bactrim and Biaxin for 3 weeks.  Stopped for throat surgery.  Skipped the monthly doc visit though the surgeon had me on Amoxicillin for 10 days due to the surgery.  The surgeon gave me a short blast of Methyprednisolone (I think a steroid) and I had a few days of serious sore throat but a lot of other body energy and enthusiasm.  The Lymes doctor said the increased energy indicated inflammation in my body, most likely due to the Lymes.  Unfortunately, my understanding is that steroids down regulate the immune system and then the Lyme can quickly become more invasive.  Vicodin was also used for pain during the steroids but I don't know that it contributed to the energy level.  This was the worst sore throat of my life for 2 weeks, even with the aid of 6 days of Vicodin and many days of aspirin.

After the throat surgery my wife indicates that I no longer stop breathing while snoring.  The snoring has changed but is still a problem for her.  I had a sinus event in the third week so it was tough to assess the results.  I eventually started on Nasonex to reduce nasal membrane swelling but this does not seem to have helped much with the snoring.

Though not reported in the years above, I continue to take Claritin (24 hour antihistimine) and  1 each 12 hour non-drowsy Sudafed (decongestant) at night for my sinuses.  These help very little but I figure I have to use anything that can help a bit.

Lyme Disease #57 - 12/22/08

After starting Biaxin and Ceftin, I had 5-7 days of heavy fatigue.  Then I came back to the status quo.  Since I didn't rebound into a fatigue level better than the status quo, I suspect the fatigue was due to travel and other lifestyle events.  Due to vacation and holidays coming I will stay on the same antibiotics just to observe the effects.  I have been taking Nasonex for sinus congestion and will attempt to get off of that.

Lyme Disease #58 - 01/22/09

No gains, No losses on Biaxin and Ceftin.  I stopped Nasonex.  I will stay on Biaxin and Ceftin while adding Cholestrymine and Actos.  These additions are an attempt to absorb and flush neurotoxins from the gut in hopes of having favorable effect on inflammation and fatigue.

Lyme Disease #59 - 02/16/09

Using Biaxin and Ceftin antibiotics, while adding Cholestrymine and Actos, produced increased fatigue and increased Sinus problems.  Contrary to the usual plan of only changing one thing, we will go with Clindamycin and Flagyl as antibiotics.  On the theory that joint issues often seen in Lyme patients has settled instead in my sinuses, we will add Celebrex to reduce inflammation.

Lyme Disease #60 - 03/17/09

Gut problems plagued me early in the month.  I finally decided the Celebrex was the culprit after one pill caused 3 days of gut serious distress.  The doc said Celebrex can burn a hole in the stomach on occasion.  Flagyl and Clindamycin seemed to have no positive effect.  Flagyl and Doxycycline will be next.  Over the counter Advil or Alieve may be tried for inflammation.

Lyme Disease #61 - 04/14/09

On the snoring front, my problems continue.  At an appointment with my Ear, Nose, and Throat specialist I received and injection in the back of my mouth roof (palate) that would stiffen the loose tissue in a month.  So far it has not helped.  He also did allergy tests on Glycerin and Coconut - to which I turned up positive.  These ingredients are very often found in soap and skin products.  Sublingual neutralization drops have been ordered but I typically do not respond to this kind of treatment.

Flagyl and Doxycycline produced no gains nor losses on the Lyme front.  Spectracef will be tried next.

Lyme Disease #62 - 05/12/09

No gains or losses on Spectracef.  Will try Tindamax alone again.  The ENT snoring doc postponed my visit.

Lyme Disease #63 - 06/30/09

This was a 7 week period due to family and scheduling issues.  I went 4 weeks on Tindamax and 3 weeks on no antibiotics.  No gains nor losses for either.  Penicillin VK next.  The ENT doc suggested a dentist to try a mouth guard for sleeping and suggested a CPAP machine as well.

Lyme Disease #64 - 07/27/09

Penicillin VK produced some added fatigue and leg muscle aches.  No help on the allergy front.  The doc historically likes this broad spectrum antibiotic so I will go another period.

Lyme Disease #65 - 09/08/09

Penicillin VK maybe produced some added fatigue and leg muscle aches.  No help on the allergy front.  The doc historically likes this broad spectrum antibiotic so I will go another period.

Lyme Disease #66 - 10/07/09

Penicillin VK produced no gains / no losses.  I will go another period and add Doxycycline.

Lyme Disease #67 - 11/07/09

Penicillin VK with Doxycycline produced no gains / no losses.  Next Doxycycline and Flagyl.

Lyme Disease #68 - 12/14/09

Next Doxycycline and Flagyl produced no gains / no losses.  I'll stay the course another month.

Lyme Disease #69 - 01/13/10

Next Doxycycline and Flagyl produced no gains / no losses.  Next Bactrim and Flagyl.  My dental hygienist said my teeth buildup was heavy and stained.  I'm guessing the Doxycycline could be the source as my last trip when on Penicilin VK she was quite happy.  Anitbiotics can kill mouth bacteria and bacteria will cause the buildup on teeth.  I'm still convinced the Doxy can give me a little fatigue and maybe it is not effective against my mouth bacteria as well.

Lyme Disease #70 - 02/08/10

Bactrim and Flagyl produced no gains / no losses.  Try Bactrim and Biaxin.

Lyme Disease #71 - 03/08/10

Bactrim and Biaxin produced no gains / no losses.  Try again.

Lyme Disease #72 - 05/08/10

Bactrim and Biaxin for 1 more month produced no gains / no losses.  Then I took 1 month with no antibiotics - no gains / no losses.

This may be the end of another era.  The Lyme doc is out of antibiotic ideas.  We agreed to stay off for a while and see how I do.  No more appointments scheduled at this time.  I'm still fighting sinus and food allergies - what next?

Lyme Disease #73 - 04/05/15

My general doctor is concerned about my slightly elevated blood pressure. I suspect it is half made up of my white-coat syndrome. But I went on 10mg of Lisinopril. Based on additional pressure tests and my occasional dizzy spells on standing, that got reduced to 5mg and seems to work better. His concerns about my elevated Creatinine is almost certainly a continued result of my diet, high in protein, as the Kidney specialist determined many years ago. I bounce around the upper limit and have for years.

I've been watching the developments of EPD, now called LDA (Low Dose Antigens) in the USA. There is currently further evolution as LDI (Low Dose Immunotherapy). The LDA/LDI practice is now experimenting with a Lyme serum. My primary EPD/allergy doctor has not done it but knows the Lyme version exists. He will research it for me.

In the mean time the EPD/LDA doctor wanted me to try some Vitamin D3 and Iodine, for a month, based on some recent Thyroid lab tests. Those seem to work OK at the outset. He also wanted me to try an IV of minerals and vitamins. I was scared of the Vitamin C content and requested an allergy test of the solution as a skin injection test. It swelled and even that small amount caused brain fatigue that lasted well past the next day. That was with antihistamines and decongestants in my system. Not good! I'm glad I didn't allow that bag of IV stuff into my system.

An IV of Glutathione was next and I did the IV but it had to be done extremely slow as I quickly noted brain pressure, brain fatigue, brain fog, and physical fatigue. The symptoms lasted past the second day. I gave this one more attempt a week later and still had problems - albeit not as severe. I gave the Glutathione IV a third try, more diluted and very slow (nearly 2 hours as opposed to their usual 20 minutes), and still had problems that lasted through the day. On seeing no gains from Glutathione I called off any additional IV treatments.

The recent iGenX Lyme test results came back with negative Western Blot IgM and positive Western Blot IgG. This was not surprizing as the tests do differ in there effectiveness with late stage Lyme. My EPD/LDA doc is sending me to his LDA instruction class in preparation for the Lyme LDA treatment. I expect quite a few restrictions around the LDA injection days and need to discuss the dose levels anticipated.

LDA/Lyme #1 - 07/08/15

I did the LDA with Lyme shots on May 22. Inhalents, Foods, Chemicals, and the Lyme serums were included. I went off the antihistamines (generic Claritin) and decongestants (12 hour Psudoephedrinne HCI 120mg)  per the schedule before the shot. I missed the fact that I could take Tofrinol (for antihistimine effects) during the critical three days and restarted the day after the shots. I paid the price with increased sinus problems to the point that I did a sequence of Cortef (5mg x4, 4, 4, 2, 1) beginning the day after LDA. Again in the second week I did another sequence due to heavy sinus issues. As for the shots I could detect no gain nor losses in the first 3 weeks nor after the 21 days. In the fifth week I restarted the antihistamines and decongestants. This summer has been tough on the sinuses, likely due to molds from heavy rains, and even with the sinus helpers.

LDA/Lyme #2 - 09/10/15

LDA#2 with Lyme at 6C dose was done June 24. Heavy sinus drainage started just before the shots so I had some challanges but I think they are not shot related. No gains, no losses is my assessment. A series of Cortef at the shot time seemed to have no effect. A series of Cortef in week 3 seemed to have no effect on my sinus congestion and drainage. 5C dose is scheduled for the next round.

 LDA/Lyme #3 - 11/16/15

Shots #3 was done 9/25/15. No gains. No losses. 5C dose for Lyme is the highest dose available. We will add Yeast at 7C next.

 LDA/Lyme #4 - 12/12/15

Shot #4 was done 11/20/15. I had a slight gain in the week following but don't know if it was the shot, if it was my 4-6 week normal cycle where I get a bit of a lift, or an oft noted yearly cycle where I see a lift just after a hard freeze and before dusty Christmas decor is brought out. At post day 21 could be another point of response - but none was seen.

Over the past months my general doc had lowered the Lisinopril (for blood pressure) to 5mg. I still had occasional light headed bouts. Then we stopped altogether. I will be monitoring blood pressure for 6 months and report back.

Next LDI shot will have Yeast/Mold at 6C strength.

LDA/Lyme #5 - 03/04/16

Shot #5 was done 1/22/2016. No gains, no losses. Next will include Yeast/Mold at 5C strength.

LDA/Lyme #6 - 05/06/16

Shot #5 was done 3/5/2016. No gains, no losses. Yeast/Mold at 5C strength (max). LDA is not helping so we will not do another treatment.

Sinus congestion still a significant problem. The current allergy doc is at his end. I got some enzymes and supplements to try (Betain, Enzymes, Vitamin D, Magnesium). Also got a shot of Depo Medrol, 80mg, a months long acting steroid. Maybe that will help. Steroids in Lyme people is not recommended at the down regulating of the immune system can let the Lyme make bigger invasion gains.  However, since I've not made gains on the Lyme front I decided to allow the steroid injection.

Celiac - 2/25/20

Celiac Anitibodies test panel came back negative. I had wondered if Celiac disease was making my gut permiable and allowing the other food allergies/sensitivities to be visible.

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