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Most, if not all, patients with ME/CFS are highly sensitive to mold. Mold toxicity shares many symptoms with ME/CFS, so in some cases it may be difficult to distinguish between the two. Avoiding mold is essential for reducing the toxic load.


Treatment rating for Mold Avoidance

Rating keys:

1=LOW (I would not recommend this treatment)

5=HIGH (This treatment helped me a great deal)

Rating Side Effects Reason for Treatment Dosage / Duration Age Sex M/F # of years Ill Additional Comments Illness Severity Date Added
5 Within a month I was able to take a short walk. I started sleeping better. In about 4 months my POTS went away and I could stand for some time (like an hour if necessary). I still get knocked out in some buildings and in large polluted cities where my PEM and POTS return and my legs start to feel like lead weights. But most of the time if I am careful, I can now lead a normal life. In fact, after 4 years of avoidance, my brain recovered enough to participate in research for a co-authored book. Now I am writing books of my own in the field in which I got my Ph.D. Read about it, then had Dr. test for Shoemaker's CIRS panel, I had all the abnormal results after years of being told "there's nothing wrong, etc." 5 year daily non-stop commitment 365X year 69 Female 32 Mold avoidance is a tough choice. I lost everything that I was hanging onto after the first traumatic loss of health and career due to ME-CFS. But I gained so much that it made me heappy to feel good, and although I still yearn for a life with more stability and community, life is so much better than it was from 1994-2011, before I started avoidance. Also, I often got intense suicidal ideation and depression, and now if I start to get symptoms like that, I know it is from mold or another toxin in the space. I get outside in the fresh air, and try to avoid going into that building. Moderate/Severe 09/14/19
5 It was hard at first and I got some intensification, but within a month I could feel improvements, and in 4 months I was hiking, no longer had POTS/OI, and had much less fatigue. My brain also recovered substantially, but it took about 2 years before I could do academic research again. Nothing else worked long-term; it was the last ditch attempt to change my life. 5 year it's 24/7, 365 365X year 72 Female 35 This is not a strategy to try in part One has to go all in, 100%. I camped in a tent for the first year, moved around constantly, dealt with the elements but kept trying to find a rental or home purchase I could tolerate. Once I felt good and slept again, I was not willing to go back to being sick and tired. Moderate/Severe 02/03/23