International ME/CFS and FM Awareness Day Is On May 12, 2018
Thomas Hennessy, Jr., selected May 12th to be our international awareness day back in 1992. He knew that May 12th had also been the birthday of Florence Nightingale. She was the English army nurse who helped to found the Red Cross as well as the first school of nursing in the world.
Discuss the article on the Forums.

So has anybody been able to desensitize themselves to mold?

Discussion in 'General ME/CFS Discussion' started by redaxe, Dec 31, 2014.

  1. redaxe

    redaxe Senior Member

    What we seem to know.

    1) A proportion of CFS people attest that they were exposed to moldy buildings when they got sick

    2) People have also found that moving environment from a moldy place to a cleaner location (Death Valley is often cited) has a significant effect in improving cognitive function and energy levels. Moving location back to a moldy environment causes a quick and often sudden crash.

    3) This suggests immune system dysfunction. Mycotoxins are often blamed but logic says they cannot accumulate in the body so quickly to cause such a sudden relapse (people report often instant reactions)

    4) Nasal/Sinus mold biofilms (the Brewer hypothesis) suggests that inhaling mold causes pathogenic infections that produce mycotoxins but again logic should dictate that this shouldn't relate to the environment. I'm not aware of any pathogen that switches its infection on or off just because you camp outdoors in the desert.

    5) So the only (in my mind) logical response is that the immune system has become sensitized to mold somehow. But this seems to vary from person to person and mold species. Are we reacting to mold proteins? (that would make mold sensitivity an allergy). But the reaction we get from a moldy environment seems to go beyond an allergy.
    For instance I used to suffer horribly from dust mite, cat & possibly mold allergies (pre-CFS). A respiratory physician gave me allergy desensitization injections (he told me I was allergic to some molds). My symptoms were sneezing, runny nose, & my nose feeling like it was going to explode. It was awful but the symptoms are very different from what I experienced with CFS mold related symptoms.
    If we are ruling out myctoxins & mold infections the last suggestion is that somehow mold VOCs (volatile organic compounds or gases) is causing horrendous immune reactions. VOCs are the only thing I can think of that could cause the immune system to react so quickly and aggressively to relapse a person severely.

    I suspect that nasal staph/strep presence in the respiratory tract could be amplifying the immune response via super antigens. In fact nasal Staph has been undeniably linked to patients with allergies such as dust mites. These findings are challenging our original presuppositions on what an allergy is - for instance conventional medicine treats a dust mite allergy as a condition in its own right but there is an undeniable link to Staph- so is it a case of an unfriendly microbiome triggering unhealthy and abnormal immune responses?

    So that leads to the obvious question - what can we do to desensitize ourselves to mold? Has anyone succeeded in doing this. I know Richie Shoemaker has focused a lot on this. But his findings seem quite depressing, if you have the wrong HLADR gene (which apparently 25% of humans do) then tough luck your screwed. Yet many of us lived functional lives before we got hit by CFIDS and severe mold senstization. I refuse to believe that our immune systems are stuck on being 'sensitized' to mold. There has to be a way to modulate or reprogramme the immune system to not relapse our condition when we are exposed to mold.

    So has anyone found a way to do this?

    Some suggestions I can think of

    Probiotics? - They tell us that 80% of our immune system is in our gut. Does an unfriendly microbiome amplify immune dysfunction? It does seem that the science is starting to suggest this. And it may not be just in the gut but also theory that Staphylococcus biofilms in the nose/sinuses produces superantigens which aggravate mast cells and basophils which line the mucous membranes.
    I have no doubt that in a few years we will probably have nasal/sinus probiotic sprays but in the meantime i'm sure that eating large quantities of sauerkraut and other fermented foods will help with reducing MCS, mold sensitivity, IBS and other immune dysfunction we experience.

    Detoxification/methylation? Treating nutrient deficiencies and optimizing antioxidant & immune function may help the body handle toxins more effectively & reduce the crash experienced from mold exposure.

    Stealth infections? Does the presences of Strep, mycoplasma, borellia, bartonella, parasites or viruses (EBV, CMV, HHV6 etc) wreck havoc on the immune system and its response to mold and other environmental toxins? These infections are linked to inflammation and are they contributing to mold sensitivity?

    Anyway that's my thoughts - what do other people think about mold sensitivity. Has anyone found a way to completely desensitize themselves to it besides camping in the desert for the rest of our lives? how do we do this?
  2. waiting

    waiting Senior Member

    @redaxe, these are good questions. I don't have the answers but a few thoughts...

    I thought I read somewhere that mycotoxins *are* VOC's.

    The only people I've read about who have reduced their sensitivity to mold are the ones like 'mold pioneer' Erik Johnson. In his book, he recounts his experience with 'extreme mold avoidance', but after a period of time of this avoidance, I believe since then he has led a normal life. He can still react to mold exposures, but it is a mild reaction (if I am remembering his book correctly).

    You also might want to pose these questions on Erik and Lisa Petrison's website.

    I'm not sure if some people here on PR being treated with amphotericin have reduced their sensitivity to mold or if they have both remediated their homes/offices and experience health improvement so long as they avoid mold. The 'detection of mycotoxins' thread here on PR might be a place to ask.

See more popular forum discussions.

Share This Page