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, March 17, 2017

Personal Update

My last update was in January, right after I'd learned that I have an active Epstein Bar Virus (EBV) infection (positive IgM antibodies) again.  My doctor put me back on a prescription of Valacylovir to deal with the infection.  It's difficult to say whether I am still experiencing the symptoms of EBV or not because my baseline health isn't so great anyway.  I am scheduled to have another blood test on Wednesday, so I should know if I still have an active EBV infection by early April when the results come back.
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The bigger story with me is the my shortness of breath (SOB) symptom has finally abated somewhat.  ("Shortness of breath" can be a little bit of a misnomer with ME patients.  When you say you have SOB to a doctor, sometimes they think you're referring to hyperventilation.  It's nothing like that.  If anything, the breathing feels shallow and slow, and no matter how deep of a breath you take, it doesn't seem to satisfy the feeling of air hunger.)

SOB was always a symptom of mine ever since I came down with ME in 2011.  But something seemed to happen in about September of 2015.  I don't know what caused it, but suddenly SOB became a dominant symptom.  I had it every day and, on some days, the hunger for air became so intense that it would become difficult to concentrate on other things.

It started to return to "normal" again in about October of 2016--and by "normal" I mean, I still have the symptoms intermittently, but they are not as intense as they were during the year from September 2015 to October 2016.  And the post-nasal drip that almost always accompanied the SOB flares isn't really there any more.

As always, it's difficult to determine what caused this improvement because I changed a number of treatments all around the same time.  I went back on Equilibrant and another immune modulating supplemental called ImmunoStim, after being off of both for about a year and a half.  This is my best guess for what caused the SOB to improve again.

Another possibility is that I stopped taking probiotics in late summer, 2016.  Then in the Fall, I found a hypoallergenic brand of probiotics which avoids strains of probiotics that are known to trigger histamines.  I started taking that brand instead.

Another possibility is that my diet for a while had grown to include a very significant proportion of nuts, particularly cashews: Cashew butter, cashew milk, raw cashews, Lรคra bars (which are cashew based.)  Then I read about lectins and how cashews are high in lectins.  I'm not necessarily convinced that lectins are problematic in the human diet, and I've never read about any connections between lectins and SOB, but I decided to eliminate cashews for a while.  I did this also in the Fall of 2016, so it's difficult to determine which of these factors helped improve my SOB.

I also started taking Vitamin D3 (5000-10,000 IU's per day) for a while in the Fall of 2016, but now I'm back off of the Vitamin D3 and the SOB is still improved, so I don't think it was that.  I also went back on Valacyclovir in January, but the SOB had already started to improve by then.

I wish I was one of those people who had the patience to methodically experiment with only one variable at a time, but I  can't seem to do it.  So I may never know with certainty what was contributing to the worsening SOB, but I think most likely it was either the lack of immune modulators, the probiotics, or the cashews.