TO THOSE READING THIS STRING: I need to announce something. Because of Hip on this website, I found out that instead of having ME/CFS, I have CIRS, or CHRONIC INFLAMMATORY RESPONSE SYNDROME. The symptoms can be very similar to ME/CFS, but the treatment is different.
My clear CIRS is both the result of acute mold inhalation I had a few years ago, plus the fact that I have a mutated gene, the HLA-DRB, which means my immune system can't totally get rid of the mold on its own. Thus, that mold in me has festered and wreaked havoc.
And I think this is important to tell you...because it's clear that some people who come on this forum "may" have CRIS rather than ME/CFS. I personally didn't have flu-like symptoms when I inhaled all that mold as you might with a virus, but some do. Instead, I had a very over-reactive immune function for months and I was exhausted to the bone 24/7. Had to have mold allergy shots to recover.....and I thought I did
slowly recover...but I didn't...because of that gene. It continued to cause problems, including messing up my mito alongside growing methylation issues.
There are certain tests to do to see if one has CIRS. They include:
- MSH (aka melanocyte-stimulating hormone/anti-inflammatory hormone made in hypothalamus--mine was very low).
- C4a (immune system marker which reflects inflammation--mine was very high)
- C3a (also related to immunity--mine was fine--a fine C3a with a high C4a points to mold)
- MMP-9 (immune system marker--mine was very high)
- VIP (aka Vasoactive Intestinal Polypeptide/important down-regulator of inflammation--mine was too low)
- HLA DRB--determines if you are part of 24% of population that gets very sick and can't get rid of mold on your own--mine was positive)
There are others. I also have had a
high Reverse T3 (RT3) for awhile now--that is the inactive thyroid hormone that comes from T4 when on has chronic inflammation or health issues. To counter it, I've had to be on T3-only.
And by the way, I had GOOD levels of ferritin and CRP--both markers of inflammation, yet the above tests told the truth of my chronic inflammation due to lingering mold.
You can read more about CIRS, the tests and more here:
http://www.survivingmold.com/docs/Berndtson_essay_2_CIRS.pdf
I know that some of you will have clear ME/CFS, but I suspect there are going to be some who actually have CIRS since the symptoms can be similar.