So I stuck with the CSM for about 4 months at 4 doses per day (1 TBS per dose).  It was really hard to get through but I am glad I did.  It offered some relief but when I stopped taking the CSM, I started feeling worse.  Thus, I postulated that a toxin forming organism was still alive and well in my tissues.  Candida and Lyme are both supposedly producers of ammonia, and my sweat smelled like ammonia, and CSM will bind ammonia.  This led me to think that maybe I was dealing with Candida, Lyme, or both. 

I decided to try to treat the Candida theory first.  At that time, I proposed my theory to my physician at Fibro and Fatigue Center.  They had already run a lot of tests and had found I had high systemic antibodies to Candida and had two positive bands on the Quest IgM WB test for Lyme. I had both 41 and 39 bands present IgM which meet the CDC criteria for Lyme.  Prior to initiating antibiotoc therapy,  I started on Diflucan (200 mg/ once per day) and took alpha lipoic acid, milk thistle and NAC to protect my liver.  I also stared on several Oasis products.  Over the course of several months, I improved yet another step, but I still wasn’t well (Incidentally, there are reports that Diflucan can effectively kill the cyst form of Bb, so maybe I was actually taking care of both the Candida and Bb with the Diflucan.) More importantly, the ammonia smelling sweat did not correct.

Next I began the ILADS protocol for Lyme treatment.  I began with taking Bactrim and Rifampin and after 3 months of oral treatment, the ammonia smell was gone.  I was also feeling a LOT better.  The antibiotics we initally chose would also treat the MARCONS that the Shoemaker culture had shown, while at the same time were effective for both Lyme and bartonella.  I took Rifampin (150 mg/2x bid) and Bactrim-DS (200 mg/2x per day) and over the course of 3 months my sinus pressure went away and  the chronically swollen glands under my jaw went down to normal size.  It appeared that I had an antibiotic sensistive infection that was slowly responding to treatment.  So, I stayed on the antibiotics another seveal months and gradually kept improving.  There were still many ups and downs, but the general trend was surely up!  This was very encouraging, and I stopped thinking of myself as ’sick’.

As my mind started to clear and my thinking returned to normal I began to look through my list of symtoms and all the clues.  It just jumped out a me…the really hard reaction to CSM, all the tremors and twitching, the bite in the Virginia woodpile, the two IgM positive WB bands for Bb, the night sweats, the tooth pain, the ammonia smelling sweat…. it all pointed to Lyme disease and borrelia (Bb).

So we upped my Rifampin dose to 300 mg 2x per day, which is the recommended dose for Lyme (Bb).  Then I really started to herx.  I started experiencing twitching in the jaw muscle where the tremor had been for the past 5 years and my sleep became disrupted again.  But I could tell I was improving, and although there were short-term ups and downs, the over-all trend was gradually better.

I was not well yet, but much, much better.  My CD57’s were measured after 3 months of oral antibiotics and were 35 (normal non-Lyme patients are >180).  After another 3 months of bicillin shots and more oral antibiotics my CD57’s were up to 64.  At that time, I was tested for Bartonella and Babesia and was found to be positive for both.  I started treatment for the Bartonella first, and recieved 3 months of levaquin.  I had severe die-off reactions, including psychiatric manifestations, at the one month mark.  I have recently started babesia treatment with mepron and so far the results are very good.