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

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

Friday, December 14, 2018

Still positive for EBV (IgM)

Among all the MCAS test results I received last week, I also learned that I am still IgM positive for Epstein Bar Virus (EBV), the virus that causes mononucleosis.  (I didn't mention this in Tuesday's post about MCAS because it was beside the point of that blog post.)

In 2016 and 2017, I was repeatedly test for EBV, and each test showed that I was IgM positive for EBV.  IgM antibodies are supposed to indicate a current, active infection, as opposed to past infection.  Despite various anti-viral treatments, the results never changed.  I ultimately hit a dead end both in terms of treatment options and in my quest for answers to this puzzle.  At about that time, I started experiencing SIBO symptoms.  Frustrated with the lack of answers about EBV, I began ignoring EBV and focusing on SIBO.  

Not surprisingly, EBV may still be an problem. 

The reason Dr. M tested me again is because we're going to make another, more serious attempt at obtaining insurance approval for inter-muscular IgG therapy.  I truly believe this would be helpful to me--and I feel more hopeful about the potential benefits (if I can obtain coverage) than any other treatment I've wanted to try.   

Adding to my sense that EBV may play a central role in my ME, there's this article, written by Cort Johnson on ProHealth in November of this year, about ongoing research and new findings regarding EBV and its possible role in ME.  

I admit, over the years I've waffled on whether EBV is a contributor to my ME, but I'm back to thinking it is more likely than not. If I had to bet right now, I'd bet that EBV is more likely than any other cause to be at the root of my ME--I and believe this even more than Dr. C's theory of entero-viruses.  I believe that others of my diagnoses and symptoms, such as SIBO, hypothyroidism, MCAS, are all caused by complications of this smoldering EBV problem.  That's my best educated guess at the moment.   

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