So has anybody been able to desensitize themselves to mold?

[redaxe]

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?

 

[waiting]

@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 paradigmchange.me 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.

 

[MCASMike]

I've been reading the literature on this subject, including Shoemaker's "Surviving Mold" book, and while I now think I have MCAS, back in the late 1980s, after doing research in dusty old library book stacks and going to a lot of used book stores, I developed a nasty dust allergy (which from what I understand, may be due to mold or mold fragments). I had to wear a respiratory mask where I lived, because I became sensitized to the dust there, and after a few months moved to a new building and never had the problem in a severe form again. Once in a while I did get a relapse, usually when the weather got drier and the radiator (hot water heat) went on, "liberating" a lot of dust particles. but it didn't last long, and usually struck me during the night (I then put the respirator mask back on for an hour or so). I also became super-sensitized to smells (aroma chemicals), and that lasted nearly a year, but instead of avoiding them, I figured out which ones really bothered me and largely but not entirely avoided those.

I too am wary of the idea that one should totally avoid certain molecules or organisms that are ubiquitous, while taking powerful medications. I'd rather limit the exposure to the point of tolerance and use minimal medications or even things like herbal teas (which seem to help me greatly with MCAS), at least as a first attempt at relief. I also think there is the potential for things to become psychological, so that the person perceives the offending item (which may not even be present), then goes into a kind of panic attack, which then does lead to biological changes in the body, just as seeing something disgusting will cause some people to vomit. If anyone knows of some good research on this subject (it's been half a dozen years since this thread was begun, after all), please tell us about it!

 

[hapl808]

Shame that there's not more replies here. I wish I knew the answer to this. I used to have mild reactions to musty places, etc. But suddenly my reactions to certain things (not just mold - but all kinds of stuff) is off the charts. Maybe MCAS, CFS, CIRS, etc. But seems crazy to think the immune system is stuck in that gear and can't be fixed.

 

[MCASMike]

Shame that there's not more replies here. I wish I knew the answer to this. I used to have mild reactions to musty places, etc. But suddenly my reactions to certain things (not just mold - but all kinds of stuff) is off the charts. Maybe MCAS, CFS, CIRS, etc. But seems crazy to think the immune system is stuck in that gear and can't be fixed.

I prefer trying the easy, cheap, and straightforward things first, so in your case I might try wearing my resipratory mask, eliminating gluten and foods that tend to be problematic (such as fermented stuff), and also doing the basic MCAS protocol. The main question would be, do I do them all at the same time or one at a time, to try and narrow down the possibilities? Good luck.

 

[xena]

I have been able to substantially reduce my reactivity to mold with dnrs, a brain retraining program. I still struggle infections and toxicity though.

 

[hapl808]

I have been able to substantially reduce my reactivity to mold with dnrs, a brain retraining program. I still struggle infections and toxicity though.

How long did that take? I tried the Gupta program but I didn’t really see any benefits.

 

[MCASMike]

I just finished reading "Mold & Mycotoxins" by Nathan, and he is claiming that there is a crucial distinction between someone who is sensitive to mold and someone whose body has been made toxic by mold. In the latter case, "detoxification" is necessary. This is something I am wary of, and if anyone would like to speak to scientific evidence for this claim, I'd like to read throutgh it. If true, it means desensitization will not work, presumably.

 

[Strawberry]

@MCASMike you are the 2nd person I’ve heard say they use a respirator. I’ve always been afraid to try them, they sound so claustrophobic. But I need to go through boxes in my basement that may or may not have gotten wet last summer. Are respirators easy to get used to? Or is it a learning curve?

 

[hapl808]

@MCASMike you are the 2nd person I’ve heard say they use a respirator. I’ve always been afraid to try them, they sound so claustrophobic. But I need to go through boxes in my basement that may or may not have gotten wet last summer. Are respirators easy to get used to? Or is it a learning curve?

Allow me to be the third person. They are uncomfortable to wear for long periods but not claustrophobic - and they give you really clean air. I find it's a good way to test if it's an environmental issue that's bothering you.

Very little learning curve - buy a 3M half respirator and a pair of cartridges to go on it. I've used a few different ones, but now usually the 2297 cartridge seems to work well and is easy to breathe through. Maybe other people have their own favorites?

Even when I'm not going through anything that might've gotten moldy (although I just had to do that recently), sometimes I do what @MCASMike mentioned and I'll put one on when I get a reaction, even if I'm not sure where it's coming from.

 

[Strawberry]

That’s really good information, thank you. The first person I met was Dainty (from this forum). I won’t tag her as she rarely posts now, but her posts are searchable. She still relies heavily on her respirator, but is able to be physically active again and working. She used to clean my house, until her and her husband moved far enough it was no longer practical to drive here. She has a very small face - as I do - and says they have to be custom fit. Does the 3m come in various sizes? Would I have to go into a store to be fitted? That was Dainty’s suggestion... Or can I buy off Amazon? Going into a store is physically impossible for me now.

 

[Wishful]

I can't desensitize myself because I've never been sensitive to mold. I've scratched&sniffed the black stuff, just to verify that, and no, it doesn't do anything to me. So, it's possible to not be sensitive to mold, even while having ME.

 

[MCASMike]

@MCASMike you are the 2nd person I’ve heard say they use a respirator. I’ve always been afraid to try them, they sound so claustrophobic. But I need to go through boxes in my basement that may or may not have gotten wet last summer. Are respirators easy to get used to? Or is it a learning curve?

Biggest problem to me is that my eyeglasses don't fit well with the respirator on. I used to wear contacts so that wasn't a problem, but now I don't bother with contacts and it's an issue. However, as I said, since that time I lived in the dusty house (when I was wearing contacts), there have only been a few episodes when I thought I really needed it, and I think they were all at night, when I wasn't wearing glasses, of course. Otherwise, I didn't find it difficult to get used to, but the first few minutes are not especially pleasant (similar to getting used to the contact lenses).

 

[Wishful]

I agree with MCASMike: a good respirator can be quite comfortable. I found mine to be more comfortable than the disposable dustmasks I'd tried. It was easy to forget I was wearing it. IIRC, I tried several types before finding one that felt comfortable, so it's best if you can try them on before buying (yet another no-no during pandemic, I suppose).

 

[Strawberry]

Glasses... I guess that is going to be my biggest issue then.

@MCASMike @Wishful What brands do you two wear?

 

[MCASMike]

Glasses... I guess that is going to be my biggest issue then.

@MCASMike @Wishful What brands do you two wear?

You mean eyeglasses? No idea; I got them from one of those sites that are around $10 total for the prescription and frames.

 

[Wishful]

I got them from one of those sites that are around $10 total for the prescription and frames.

Me too. Zenni Optical. I don't think the brand makes a difference; it's the frame structure that matters, and that differs with each style.

I'm picturing someone in an optical store, wearing a respirator to test frames on. Strange looks from other customers?

 

[Strawberry]

I was meaning respirators

 

[Wishful]

I was meaning respirators

I'm not sure what brand it is. It's 20+ yrs old, so probably not available now. I haven't used it in a very long time, since ME killed my desire to do projects.

 

[MCASMike]

I think my respirator is by 3M.