Slayadragon Mold Avoidance

Discussion in 'Fibromyalgia Main Forum' started by pawprints, Dec 18, 2008.

  1. pawprints

    pawprints New Member


    I am interested in finding out more, expecially when your book is done.

    I left you a message on the Yasko board...hope you get it.

    If not, I can't figure out Y!

    Are you on the Lyme list?

    Just not sure how to get the info, so I can see if it would help me.

  2. Slayadragon

    Slayadragon New Member

    Hi Shana,

    I responded to you on dr. amy's. I'm also on lyme, cfs united, various cfs yahoo groups, and the major free internet mail providers.



    [This Message was Edited on 12/19/2008]
  3. Chootik

    Chootik New Member

    Hi Slaydragon.

    I'm very interested in getting info about MOLD as well.

    I just tested really high for Mold Antibodies and wanted to see what is the proper way to handle this? Do I get my house checked? How do I get rid of the mold in my body??

    I know you are the expert when it comes to MOLD, is there any written protocol that you can send me or point me in the right direction so that I know what to do next?

    I really appreciat your help.

  4. Forebearance

    Forebearance Member

    Hi Mariam,

    I think it is important to understand the difference between a mold allergy and mold poisoning.

    I thought that antibodies to mold were a sign of a mold allergy. Is that right? I guess it's important to get rid of things you are allergic to, if that is what's going on with you.

    If you want to learn more about mold toxin poisoning, the best thing to do is to read Dr. Shoemaker's book, "Mold Warriors". It also has so much info about the immune system and what is going on in the bodies of people with CFS. He is really a pioneer in understanding this stuff.

    I'm sure Lisa will weigh in on your questions too. I just couldn't help myself from jumping in! lol

    One thing I know is that Lisa has a lot of experience with testing houses. She had to learn a lot in the process of figuring out what was going on in her house. Her experience could save you a lot of wasted money on testing that doesn't mean anything.

  5. Slayadragon

    Slayadragon New Member

    Hi Chootik,

    Below is some information that I wrote on another thread.

    If you wouldn't mind, please contact me at ya-hoo (same name) and let me know your e-mail address. I want to make sure I have it on file to send you more mold info when it's done, and to send you a bit more information now.

    Best, Lisa


    Hi Gary,

    (If you come back to this thread.)

    I'm so happy to read that you're doing so well!!!

    I have a question for you regarding your recovery.

    This will seem a bit off-the-wall, but are you living in a different home than you were when you got sick? or working in a different building?

    (Not when you started Valcyte, but when you FIRST got CFS.)

    I ask this because I've been making an effort to talk to people who've gotten substantially better from CFS, regardless of what treatments they have used.

    Thus far, when I've probed deeply enough, I keep finding that people either have a real hypersensitivity to toxic mold and/or have strong evidence of toxic mold exposure in their pasts. In a lot of cases they have no idea what they're avoiding, but tend to try to stay away from places that "feel bad." (This type of mold generally cannot be smelled or seen, and so the "feeling" is all we have to go on.)

    The newest person in this group is StormySkye, for those who remember her. Herbs and supplements helped her with various infections, but she now believes that mold is a very big part of the equation.

    The problem with the mold, for CFS sufferers, seems to be not just the poisoning but that the body develops an anaphylactic-type "allergy" (actually sensitivity since allergies are to benign substances) to the poison.

    As with some peanut allergies, tiny bits of the "allergen" (e.g. poison stuck to items that briefly passed through moldy structures) can result in huge declines in health. With constant complement activation, the pathogen-fighting part of the immune system falls away, letting all kinds of bad bugs (some very bad) to take over.

    Moving away from a moldy environment usually doesn't help CFS sufferers a lot, since in many cases they still get enough ongoing mold exposure to keep the complement activated. However, I think that it may be that when some of those people take antivirals, their immune system starts to reset itself and they get better.

    Those folks who take antivirals while they're still in a moldy environment may not do so well though. That was my own experience last year.

    It seems very clear at this point that there's a toxic mold connection to CFS. How it ties into antiviral use is a little more muddy though.

    An update on me: I'm now absolutely well with no symptoms whatsoever, insofar as I avoid mold poisons to a sufficient extent. Far more healthy (and happy) than any 44-year-old has the right to be. Considering that a year ago I was in bed 18-22 hours a day and had/have an absolutely classic case of CFS, this is saying something.

    It's taken a lot of work (detoxification and scrupulous mold-avoidance skill) to get to this point though.

    Right now I'm addressing Lyme with antibiotics, and am considering trying an antiviral at some point. It will be interesting to see if I can lower my mold reactivity that way, and thus perhaps not have to be as diligent about the mold avoidance. It's a lot harder to avoid mold poison molecules than it would be to avoid peanut dust!

    Anyway, Gary, it's nice to run into you here. Please do let me know your thoughts.

    Best, Lisa (lisapetrison)


    I don't want to turn this into a mold thread, but I will briefly respond to the questions.

    Dr. Shoemaker is absolutely brilliant. However, in "Mold Warriors" he admits that his protocol does very little to help patients who have CFS.

    In the book, a chapter is devoted to a fellow named Erik Johnson (formerly of this board under the name erikmoldwarrior). Erik was one of the patients in the original Incline Village cohort in the 1980s, where Dr. Peterson and Dr. Cheney got the CDC to recognize CFS a real illness.

    After a lot of trial and error, Erik decided to try to address what he knew was a sensitivity to toxic mold. Eventually he got really good at it, and to his amazement his illness went together long as he kept up his avoidance strategies.

    Over the past year, half a dozen folks with CFS (all of this board) decided to try Erik's approach. We all were just random CFS sufferers, none of whom had any idea in advance that toxic mold might be an issue for us. It turned out that we all had toxic mold reactivity. All of us have, by following Erik's approach, obtained substantial improvements or full recoveries (again insofar as toxic mold is avoided).

    Erik is in frequent communication with Dr. Shoemaker, who of course is interested in this "extreme avoidance" approach. There's nothing written on it yet, but I'm in the process of putting together a book on it. Erik has been working on this for 20 years, and his approach is quite detailed and information-dense. I'm going to distribute it free of charge (at least for a while!) to CFS sufferers, since it's important that people are able to gain information about it. Those interested can write to me at Y! and I will send you a copy when the first draft is finished.

    As a side note, I would highly encourage anyone who thinks that they might have a toxic mold problem in their home not to go hire a remediator to look for it. That will cost a lot of money and not fix the problem to the extent that CFS sufferers need in order to improve. Even more importantly, DO NOT go looking for the mold yourself or try to remove mold that you know exists. This is a very dangerous thing for anyone to do, and for CFS sufferers often results in extreme negative effects from which many people never recover.

    CFS patients have a hard enough time as it is without risking getting any sicker. Toxic mold is dangerous and sometimes deadly stuff. Be safe!

    Best, Lisa

    [This Message was Edited on 12/19/2008]
  6. cherylsue

    cherylsue Member

    Hi Lisa,

    I don't dome to this board very often, but was wondering how you were doing with Lyme treatment. I know you made good strides with mold avoidance. (hooray)

    Did you go see Dr. C in Mo? What are you doing for Lyme?

    I'm in another relapse due to a stomach virus followed by a cold relapse. I am going to attempt to return to work Friday. I did reach 85% before I god sick around Xmas.

    Kudos to you.

  7. Forebearance

    Forebearance Member

    Hi Cherylsue!!!

    It's great to hear that you got up to 85%. Wow!

    I want to let you know that Lisa hasn't been stopping by this board very often lately, because she is so busy working on her "mold manual". She's very aware of how helpful it would be for people to have something written about how to do the mold avoidance lifestyle. It would be a lot easier than begging Erik for details. lol That's what we've all been doing up to now.

    All of us random people with CFS who decided to try it, I mean.

    I believe Lisa said that she is taking doxy for Lyme. She said that now that she's away from a moldy environment, she can tolerate the doxy much better. She's had many fewer side effects from it. And it seems like she's making real progress on killing off the Lyme.

    I hope you feel better soon!


  8. cherylsue

    cherylsue Member

    It's good to see you. How are you doing? Have you made any progress? Are you keeping warm this winter? Thanks for responding about Lisa. Have you moved from a mold environment too? Have you been tested for Lyme?

    Hope you are doing much better!

    Hugs and kisses,
  9. Forebearance

    Forebearance Member

    Yes, I have made progress! I am really happy about it. I moved out of my old moldy apartment and into a new place that is relatively mold-free. I also put all my possessions into storage and started over with all new stuff. It was very hard, but now I don't feel half-dead all the time.

    I am concentrating on detoxing, very slowly, and staying warm. I did get tested for Lyme recently (for the third time). This time it was a more sensitive test. I'm still waiting to see the results.

    I hope you're keeping warm, too.