CFS: Forebearance's thread 45

Discussion in 'Fibromyalgia Main Forum' started by Forebearance, Oct 26, 2010.

  1. Forebearance

    Forebearance Member

    Hi everyone,

    I recently found myself in a bad situation. I had to stay a couple nights in a place with mold toxins that was making me pretty sick. I could tell by the way my heart was pounding and my back was aching that I wasn't going to be able to sleep at all.

    So I tried taking a couple Aleve pills. They reduced my inflammation enough that I could sleep, which gave me the strength to get out of there. I am sure that this worked because I had never taken Aleve before. If I continued to take them, I am sure the effects would diminish. The only thing that works consistently is mold avoidance. But in a pinch, this helped me a lot.

    I've been reading about Dr. Lipkin's search for the factor that causes some labs to be able to find XMRV in blood samples and some not to be able to find it. It looks like it is going to turn out to be some procedure or variable that nobody ever imagined would make a difference. It's going to require thinking outside the box.

    I think that's the hardest thing about ME/CFS. It seems to require people to think in new ways.

    I bet nobody ever imagined that a human being could be as sensitive to mold toxins as some of us people with ME/CFS are. Even as I'm experiencing it, I'm thinking "This is ridiculous! I can't believe it!" And yet, it's reality. You can't argue with reality. Reality always wins.

    I read a recent entry on Mindy Kitei's blog where she described someone having CFS for 20 years and having seizures and then eventually dying. I felt really sad reading that. What if the person had been experiencing mold poisoning?

    I'm extremely grateful that I know about mold avoidance. If I were to start having seizures, I would know to get out of whatever building I was in. And maybe I'd get out of the town I was in. And maybe the state I was in.

    Moving is really hard, but I think it's better than getting cancer or dying of heart failure.

    I want to live long enough to see a cure for this "easy to poison disease".

    I just read Amy Dockser Marcus' blog for the WSJ. In the comments after it, someone posted the study by Donald R. Staines from Australia called "Postulated vasoactive neuropeptide autoimmunity in fatigue related conditions: A brief review and hypothesis". Wow! This blew me away!

    It seems to be related to Dr. Shoemaker's work, and I could also see how it could be related to XMRV. Maybe XMRV is involved somehow in messing up the immune system this way. It just seems like it's a great study that could help fill in some gaps in our understanding of ME/CFS.

    Man, I really hope other people who are not associated with Dr. Shoemaker will start following up on this line of thinking. Then maybe we could get some critical mass going and get some things figured out. I want a bunch of scientists to get interested in this!

    Somehow all these discoveries have to connect.