During Part I, I recounted the biotoxin exposures, and a some of the mysterious symptoms and catch-all (and in my opion, fairly meaningless) diagnoses I recieved from many different physicians.  Here is the list of diagnoses I had recieved:

• Irritable Bowel Syndrome (IBS)
• Neurally Mediated Hypotension (confirmed by tilt table test)
• Excercise Induced Asthma
• Attention Deficit Disorder (ADD)
• Idiopathic Lymphopenia
• Chronic Fatigue Syndrome (CFIDS)
• Low Antibody Production (low IgM, low IgA, low sIgA)

And here is a fairly complete list of the symptoms or clues as written down in my journal as of 4/30/06: 

• Epstein Bar Virus reactivated as per immune panel
• low T cell count (CD4’s in the low 200’s)
• low IgM and sIgA
• always tired and fatigued but not in a ‘normal’ way
• inability to concentrate
• inability to assimilate new information
• periods of high anxiety for no apparent reason
• low free testosterone
• low arginine vasopressine (ADH)
• food with a high arginine: lysine ratio worsens symptoms
• chemical sensitivity
• red sores in mouth/hands/lower legs
• eye twitching
• ‘flashing lights’ in eyes when closed
• jaw tremor
• benign fasciculations (twitching) in left calf and then later in right calf too
• NMH
• white patches on gums where wisdom teeth used to be
• tooth grinding at night while asleep
• TMJ in left jaw
• major transient tooth pain
• right wrist occassionally very achy
• hard knot of ‘unusual muscle mass’ on back on neck as determined by MRI
• liver/gallbladder pressure on occassion
• sweat response nearly gone
• sweat smells like ammonia
• bowel and digestive problems
• swollen lymph nodes in both armpits - these get bigger when I eat certain foods
• dark circles under eyes when I eat certain foods
• little bumps under both eyes, but more so on right
• transient loss of taste
• tinnutitis in both ears
• transient numbness in right thumb and in left thigh muscle
• poor tolerance to cold
• recurrent infections
• major insomnia
• bumps on roof of mouth
• crimson crescents, regrowth of lymph tissue (tonsil node)
• and finally…can’t tolerate carbohydrates (suspect sugar setting off candida)

Quite a list right?  Imagine going in to see your doctor and giving them that list of symptoms.  I did that once, and was not taken very seriously, so from then on, I only brought up one or two symptoms at a time, and was bounced from specialist to specialist.  Looking back, that was NOT the right thing to do.  For anyone to have a chance to figure this all out, they need all the clues.  Funny enough, I recall asking several doctors if all of these symptoms and problems could be related, they all said not a chance.  Several of them sent me to a pychiatrist, whom I went to in the spirit of keeping an open mind and wanting to leave no stone unturned.  The psychiatrist diagnosed my with mild depression, secondary to a physical illness and said that I was extremely well adjusted considering my life was turned upside down.

Over the 2.5 years, I saw a lot of high powered MD’s and I heard and saw it all.  Once, I was seen by a sleep disorder specialist MD at a big presigious learning and research hospital in the Northwest.  After my initial  intake appointment, I got a hold of his notes in my medical records and saw that he had stated that he thought I was  ’playing the sick role”.  He made this ‘insight’ after his ‘exhaustive’ 45 minute interview.  Just imagine making such an assumption and writing a patient off after a 45 minute interview.  Needless to say, I never wasted one more minute of my time with that incompetent buffoon. You see, I was on a road to healing and nobody was going to stand in my way.  I had bootstrapped my way out of worse situations that this, and I knew deep in my gut that I could do it again and that it was possible, I just needed to find the right information and work wth the right doctors, and make my health a higher priority.  More on the latter in another post.

I flew from coast to coast to see Dr Shoemaker, who is located in Maryland.  I arrived quite beat-up from the long flight.  Flights used to cause symptom flares, possibly because of the lower oxygen partial pressure or possibly due to increased biotoxin desorption due to the lower over-all pressure (my guess is primarily the latter for me).  At any rate, I found Dr. Shoemaker to be an extremely bright, passionate, and energetic fellow.  What struck me most was his natural curiousity.  You see, he still had the kind we all have as a child, but that most of us lose in adulthood.  After a thorough evaluation and VCS test, he told me that he was nearly certain I was dealing with a biotoxin illness.  He thought he could help, but we needed to get my lab results.  In the meantime, he wanted me to start on the cholestyramine (CSM) right off.  Since I had been tested for Lyme 4 times as various labs (IgenX, Quest, and LabCorp) and had recieved negative results on all of them, he thought the odds of me having Lyme were low.  This is important since taking CSM if you have Lyme can be very, very, very hard to bear.  In fact, Shoemaker prescribes a medication called Actos to help make this more bearable, but in my case, he did not strongly suspect Lyme so we marched on ahead with the CSM. 

All I can say is buckle up and hold on.  I’ve always been very active and have experienced a lot of pain (2 broken legs, broken wrist and finger, major cuts requiring surgery, etc.) but nothing could have prepared me for this.  It was an out of body experience and I do not have words for it.  It was something like I would imagine a mental disorder would be like and the worse viral infection you’ve ever had at the same time. So I lowered the CSM dose and I started to feel much better.  In fact, much better than I had before.  The  fact that the CSM, which stays in the gut and doesn’t enter the bloodstream, had caused such a wild reaction was a sure sign of the presence of biotoxins.  This was the first glimmer of hope that I was on the right track and might get to a root cause for this baffling illness.

A few weeks later, I got my lab results back from Dr. Shoemaker which showed my MSH was low and my C4a was high but not terribly high. Additionally, my TNF-alpha was low, my blood osmolality was sky high and  I had MARCONS in my sinuses.  Over-all, it confirmed I had a biotoxin related illness but did not indicate which one.  My history was consistent with mold exposure but I had also been bitten by something in a Virginia woodpile years before and had spent a lot of time outdoors in endemic areas in two states and had found ticks on me before, so Lyme (and co-infections) could not be ruled out.  In fact, the very strong reaction to CSM actually supported a Lyme diagnosis, since Lyme toxins are notoriously the hardest on a person during CSM therapy.

Since Dr. Shoemaker was on the East Coast and I was on the West Coast, I also went to the Fibro and Fatigue Center (FFC).  FFC is familiar with, and uses some of Dr. Shoemaker’s protocols (CSM and MARCONS treatments).  I found the staff there to be warm and compassionate and I didn’t spend any time trying to convince them I was sick.  My MD recorded my symptoms and test results thus far and said I looked like a textbook case but we would run some labs to see what we could find. 

We ran a pretty thorough battery of tests. The unchallenged (unchallenged is not a very informative test actually & the challenged test showed elevated levels) levels of heavy metals was low, Babesia negative, CMV negative, mycoplasma pneumoniae negative, chlamydia pneumoniae negative, HHV-6 PCR serum negative, and ehrlichia chaffeensis negative (I should note that many of these tests are for the immune systems reaction to the presence of the organism. If the immune system is not functioning normally, then all bet’s for the validity of the test are off. Thus a positive test is still valid, but a negative test is really inconclusive!). New lab findings of interest included:

• low free testosterone
• elevated HHV-6 IgM Antibodies
• reactivated Epstein Barr Virus (EBV) (did not detect nuclear antigen (EBNA) which provides long-term immunity
• elevated mercury, lead and thallium on a Doctor’s Data heavy metal challenge test
• elevated antibodies (AB IGG and AB IGA) for candida in the blood
• decreased IgM
• decreased (low normal) IGG3 and IGG4
• two positive bands on a Quest Diagnostics Lyme IgG Western Blot test (bands 39 and 41 reactive)

Although I had been tested for Lyme about 5 times, it appeared the CSM had cleared enough toxin for my immune system to recognize the Lyme antigen and I had two positive bands on the WB. For many people, they may have Lyme but never show a positive test. This unequivocal test was still a big clue for me and it got me started down the path to become Lyme Literate. Fortunately, there are other tests that can be done to help rule in/rule out Lyme. I also had a Candida infection, which was consistent with my sensitivity to sugar and/or carbs (even though none of my local doctors had acknowledged that as even a possibility!). The reactivated EBV and HHV-6, low IgM & IGG, and low CD4’s were all signs of immune suppression.

But what was the cause? Was it the heavy metals, mold, or was it Lyme, or was it a combination of all of these? I did know that biotoxins were involved but now it was time to start peeling back the onion to solve the puzzle in Part III.