Tracking my efforts to beat Myalgic Encephalomyelitis (ME), aka CFIDS, aka CFS

Tracking my efforts to beat Myalgic Encephalomyelitis (ME), aka CFIDS, aka CFS

Thursday, April 19, 2012

Do I need to see *multiple* ME specialists?

I just finished my second course of antibiotics since the start of the year, and just like the last time, I'm riding a hot streak again.  Any time I go for more than about 4 days without a crash of some kind, I consider myself to be on a hot streak.  My crashes are ordinarily regular and dependable.

According to the collective knowledge of the ME/CFS blogosphere--and common sense--when one feels better for a time after antibiotics, it suggests chronic bacterial infection.  (So far, I've mainly focused my treatment on my viral infections, such as EBV and HHV-6.)  I have two possible theories to explain this.

The only bacterial infection that appeared on my blood panels was mycoplasma pneumoniae, a common ME/CFS co-infection.  Only the IGG titers were high (not IGM), but they were very high, indicating a possible re-activation of an old infection due to my weakened immune system.  (3.08, where anything above 1.1 is considered positive.)

The other possibility, of course, is that I have another, unidentified chronic bacterial infection...probably something related to Lyme disease.  I've had the Western Blot test for Lyme, and all 10 bands were negative, which most doctors consider to be fairly definitive.  But, I understand that Lyme literate medical doctors (LLMDs) will also test for a number of related bacteria that are not detected by the Western Blot test.  I may need to visit an LLMD to rule out these other Lyme-like infections.

Of course, another possibility is that my "hot streaks" are mere a coincidences.  After all, I'm working with a sample size of only two.  For now, I plan to find an LLMD in my area, and if those tests are negative, consider treating mycoplasma with antibiotics.  Although, with my existing candida overgrowth, long term antibiotics must be a last resort.  The bad news is that there is only one doctor in the entire United States who promotes treatment of ME/CFS by attacking mycoplasma infections.  But the good news is, he happens to work in my zip code!

All of this just goes to show how complicated ME/CFS can be when you start dealing with opportunistic infections that take advantage of a weakened immune system.  You have to spend an enormous amount of time and energy tracking doctors who are knowledgeable about these infections. Even the rare ME/CFS specialist tends to focus on select groups of pathogens, such that, if you want to see "the big picture," you are left with no choice but to find multiple ME/CFS specialists.

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