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.  


  1. Happy birthday! I know how you 40'th is coming up too but my illness started on the very day I had my 25'th birthday. It stole my youthful years, career, and the potential of having a family. So, remember that it could always be worse. It's good that you had already got your family started and were well into your career prior to the onset of this horrible disease. Of course, this still sucks to the nth degree and I definitely sympathize with you on so many levels but do remember to be thankful for what is left.

    Best wishes,

    1. Hello R. Sorry my comment is almost a month late! Thank you for the birthday wishes and I wish you the same when your 40th arrives soon. I will keep in mind what you said.