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My Mold Avoidance Story

Blog entry posted by Forebearance, Apr 30, 2014.

Greetings, everyone.
Someone asked me what my mold avoidance story was, so I will try to write down the highlights of it here.

The basic facts are these. I moved out of my apartment with a mold problem in May 2008. Since then I have lived in seven rental homes, six vacation rentals, many campgrounds, and many hotel rooms.

To go into more detail, I had had a classic, moderate case of ME/CFS for 18 years at the time I decided to move. I had been living in my garden level (half basement) apartment for 11 years, and it had had three flooding events during that time.

I had NO idea that anything about sensitivity to mold or mold poisoning had anything to do with me. Then I read Dr. Shoemaker's book, Mold Warriors, and found it pretty convincing. So I took some baby steps. I did the online VCS test and it showed my brain was being affected by some kind of neurotoxin. I tried some phytosterols from the health food store, thinking that they would have a similar function to cholestyramine. They made me feel better.

So then I sent in a sample of my living room carpet to Mouldworks and it came back with several different kinds of toxic mold living in it. Plus a toxin producing bacteria. I did Dr. Shoemaker's basic panel of blood tests at the time, and the results pointed to mold poisoning. The genetic test, the HLA-DR test, showed I had a mold-susceptible haplotype.

So I decided to move. I sorted my possessions and put about half of them into storage. Very soon after I settled into a new temporary place with new stuff, I noticed that I had more energy. And the big difference was that I no longer felt the constant agonizing misery that I had felt for 18 years. It felt like going from being half alive to fully alive, although still sick.

At the same time, I noticed my body reacting to some stores that must have had mold in them. I became more sensitized to toxins of all kinds, including chemicals. Getting away from and decontaminating from these things took a lot of effort.

I intended to find a new apartment that would be a healthier place to live. But in those early years I ran into some very bad luck and made some big mistakes. I found that for me there was a big learning curve in practicing a mold avoidance lifestyle.

I was working on detoxing this whole time, but I could only go so fast. It seems like other people have been able to handle detoxing harder than I can.

After around three years of trying various living arrangements in my home town, I ran out of places to try. I began to travel to different states. I discovered that in places with really beautiful, pristine outside air, I had a bigger margin of error for making mistakes.

So that's where I am today. Traveling around and looking for a good place to rent. In hindsight, it probably would have been better for my personality to do a less extreme version of mold avoidance. But I might not have been able to help it. My reactivity dictated my choices as I went along, had more mishaps, and found fewer places that felt good to me.

I wouldn't either encourage or discourage anyone from trying a mold avoidance lifestyle. Whether it's the right lifestyle for someone depends on a lot of factors. But if someone decides to try it, I would be supportive of that person.
taniaaust1, Nico, justy and 3 others like this.

About the Author

I've had ME/CFS for 24 years. I'm looking forward to the day when I can settle down in a nice, non-moldy home.
  1. Forebearance
    Oh man. It was so long ago I can't remember. I guess I should take it again.
  2. tdog333
    What did you score on the VCS test?