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Detection of Mycotoxins in Patients with CFS

Discussion in 'Latest ME/CFS Research' started by slayadragon, Apr 11, 2013.

  1. taniaaust1

    taniaaust1 Senior Member

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    I have severe ME and lived for 22? years I think it was in an extremely water damaged building with severe mold issues at times (my house would even make some of my visitors start to cough and complain about mold smell.. interestingly.. many of my visitors could smell it more then I could, I guess I got used to it). Just before I recently moved out.. a contractor had recommended the gov housing agency I rented this house from to actually replace the whole roof rather then just patching it up again as had been done several times before (stupid housing agency thou just went and patched it up yet again.. so now the new tennet is living in this place). . There was water marks in several areas where water had been running in the roof and then down into the walls. (it used to then end up pooling up between the cracks of my wooden floor boards.
  2. Graeme

    Graeme almost there...

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    A small detail, but Dr. Shoemaker reports in Surviving Mold that 92% of his patients with biotoxin illness test positive by VCS.
  3. Graeme

    Graeme almost there...

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    Great job getting this, Lisa. There have been a number of bloggers and forum posters tempering their position because of this concern.
    merylg likes this.
  4. katcoff

    katcoff

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    Interesting. I first got CFS in the 1970s in college. At the time, I was living in an old off campus dorm in NYC. It was winter. I was on the first floor, the floors were cement and the place was very dank. A dorm neighbor of mine also got CFS. The mold thing makes sense as a factor then, but unless this is some super strain I don't understand how it could live in my body over 40 years. By the way, the other guy in the dorm recovered from it after a while but I didn't.
    I also got sick suddenly, with a flu-like illness.
  5. slayadragon

    slayadragon Senior Member

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    twitpic.com/photos/SlayaDragon
    Mycotoxins are poisons. They are just chemicals -- no more alive than the chemicals that are used, say, as pesticides.

    Molds that make poisons can be present a) inside moldy buildings, b) in the outdoor air (resulting from moldy sewage or moldy crops), c) on contaminated foods (such as peanuts or corn), or d) growing in one's own body. It's unclear which of these sources the mycotoxins in the CFS study came from.

    Apparently, some people's bodies are more able to expel these toxins than other people's bodies. This could be why some people who are exposed to a moldy building do not get sick (because their bodies rid themselves efficiently of the toxins) while other people get sick permanently (because they never get rid of the toxins and their poisoned bodies are unable to efficiently fight off other immune challenges such as viruses).
    elbosque and merylg like this.
  6. dannybex

    dannybex Senior Member

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    Yeah, I was one of them, due to brain fog and sloppy googling. :)

    By any chance Lisa, did Dr. Brewer talk about how he's treating these patients?

    Thanks!
  7. slayadragon

    slayadragon Senior Member

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    twitpic.com/photos/SlayaDragon
  8. dannybex

    dannybex Senior Member

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    Thanks Lisa for the link. Very interesting about the various probiotic strains that help to inhibit or absorb various mycotoxins...
  9. Ember

    Ember Senior Member

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    According to Dr. Cheney, “There is no clinical difference between Chronic Inflammatory Response Syndrome due to water-damaged buildings and Chronic Fatigue Syndrome....” (Paul Cheney Seminar - Part 2 at 25:50).
  10. slayadragon

    slayadragon Senior Member

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    The full quote from Cheney:

    >This is Dr. Shoemaker’s paper, which is going to be an important one. He just published it this week actually, using nasal VIP on 20 patients who had what he calls Chronic Inflammatory Response Syndrome related to Water Damaged Buildings, because he’s a mold expert.

    >By the way, there is no clinical difference between CIRS due to water damaged buildings and Chronic Fatigue Syndrome. We trade patients. I get his patients that he can’t seem to fix with mold, and he gets my patients that I can’t seem to fix because maybe they have mold. So we keep trading patients, and we can’t tell the difference between them.

    http://www.survivingmold.com/docs/VIP_published_3_2013.pdf

    Those who have FB can read my notes from the presentation here:

    https://www.facebook.com/lisa.petrison/posts/4530144744041
    Forebearance, Skyline and Tristen like this.
  11. MNC

    MNC Senior Member

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    I think it's like allergies. They may last forever once the immune system overreacts to some exposure.
  12. katcoff

    katcoff

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    I get that, but would the immune system cause mycotoxins to to be secreted into the urine? Somehow I doubt it.
  13. slayadragon

    slayadragon Senior Member

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    When I was living in my moldy house, I developed an anaphylactic latex allergy. This was subsequent to doing a lot of self-injections where I pushed the needle through a rubber stopper on the bottle and then didn't switch to a different needle.

    After a lot of mold avoidance and detox, the latex allergy went away. Supposedly latex allergies never do that. But then, most people don't do avoidance and detox to the extent that I have.

    Now, my mold reactivity seems to be pretty much have gone away too. Or at least, there are very few mold toxins that bother me now. A few specific ones still are problems, but they are much less problematic than in the past.

    So I'm going to suggest here that maybe the mold reactivity actually was not significantly different than the latex allergy -- that both of them were due to my body having gotten overly toxic in general and with regard to those specific toxins, until it went into overload with additional exposure, and that both of them were repaired through the process of detox.

    But if all these "allergies" are driven by toxicity, this would suggest a different paradigm than the "mystery disease" paradigm that most allergists cling to. Like, maybe the solution would be not to try to "fix" the immune system by developing drugs to screw with it, but instead figure out how to get the toxins out.
    merylg, Skyline, MNC and 1 other person like this.
  14. scarlet56

    scarlet56

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    Hello Slayadragon:

    I was told you know alot about being exposed to mold with cfs...I was working on my shed the last couple of weeks and got exposed and have had terrible pins and needles and headaches for week or so...what can I do to get back where I was??
  15. aquariusgirl

    aquariusgirl Senior Member

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    So what is teh treatment for mycotoxins? apart from avoidance?? thanks
  16. Tristen

    Tristen Senior Member

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    Hey Lisa,

    You've obviously interacted with many people who have done Shoemaker tx Protocol. May I ask.....how much a difference in level of success do you see in those who have completed the tx, and done the VIP as well?
  17. aquariusgirl

    aquariusgirl Senior Member

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    And where are the patients who are being treated by Brewer? How come we haven't heard from them?
  18. Sparrowhawk

    Sparrowhawk Senior Member

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    Bumping this thread.
    Several good questions above.

    We just found black mold in our house, which is small, so I've been on either side of the room with the mold for the past 18mos of being sick after my big collapse. So while it may not have been the root cause of my collapse, it may have, acording to the toxins theory, been a contributing factor to my inability to heal (eg low NK cell activity).

    I know I am reactive because when I went into the room with the plumber I got dizzy and later had heart palpitations. I also have a history of previous exposure which I mentioned elsewhere -- aspergillosis in both my ears and a basement full of it when we lived on the east coast. So if indeed exposure is additive then that may be a factor as well. I've also been in some pretty toxic post disaster areas as well, heaven knows what I breathed in.

    We moved out and remediation started yesterday. This business of half lives is interesting because I was hoping to feel better. But I brought all my bedding so maybe that's the problem.
  19. globalpilot

    globalpilot Senior Member

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    I'm so sorry to hear this Sparrowhawk. I just had a major relapse as well and sure enough, my air conditoner had a blanket of black yuck in it. Going to send a sample in to be cultured. I'm sort of starting to come around after removing the a/c about 3 weeks ago.

    I was already being treated by a mold literate doctor so thank goodness we're on top of it. But I developed symptoms I've not had before and it was very scary.
  20. Sparrowhawk

    Sparrowhawk Senior Member

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    Yikes but glad you found the issue, globalpilot. That is interesting about the length of time it is taking you to feel better, half life in action perhaps? Best to you for healing and thanks for the response.

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