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

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

Sunday, October 30, 2016

Personal Update

I had a birthday this past month.  The big Four-Oh.  Nobody is ever happy about turning 40 and I am no exception.  Officially now, half of my thirties were lived with ME.  But I think about ME less than I did in my first three years of diagnosis.  It is simply part of life now.  

Starting around the beginning of 2016, I believe, I began to ween myself off of the supplement Equilibrant.  (Equilibrant is an immune-modulating supplement that I have written about on this blog--recommended by one of my ME doctors.)  For about 4+ years, I had taken Equilibrant at the full dosage of 6 tablets per day.  During that time, I saw my condition stabilize and I experienced fewer and shorter "crashes."

Equilibrant is expensive and I wasn't sure if continuing to take it was necessary to maintain my level of functionality.  So by about mid-Summer, I had reduced intake all the way down to nothing.  I was completely off of Equilibrant.  And for the first month or two, I didn't notice any change in my health.  

But then my monthly health rating averages fell significantly.  I also developed shingles during that time--possibly related to stopping taking Equilibrant.  Over the same period of time, I also stopped taking daily vitamin B complex tablets.  My energy waned.  

In late September I decided to resume Equilibrant and B complex.  October has been by far my best health month of 2016.  I feel fairly certain that those supplements are helping and that I should continue to take them indefinitely, with occasional breaks or "holidays."  

I also found that my sleep was worse during the time when I was not taking vitamin B complex.  It occurred to me then that many patients say vitamin B12, which is part of the B complex, helps with sleep.  My sleep did improve after resuming B complex.  

So here I am again, stuck in a "holding pattern," very thankful that my case of ME has remained moderate compared to many patients, but also not as hopeful as I once was that I might recover without a breakthrough in ME treatment options.