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Mold, Dr. Cheney and ME/CFS

Discussion in 'Addressing Biotoxin, Chemical & Food Sensitivities' started by slayadragon, Apr 27, 2010.

  1. floydguy

    floydguy Senior Member

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    Mold Avoidance

    I am a patient of Dr. Shoemaker's and fit his criteria for mold illness almost to a T. However, there are several abnormalities in my case: I didn't have a "smoking" gun bad mold environment (I can only assume) and I don't have mold susceptible genes.

    In any case, despite relatively extreme mold avoidance - living in a tent for many months in NV - and following Dr. Shoemaker's protocol my tests didn't improve. In fact, they went UP rather dramatically.

    Personally, I think the immune system gets so dysfunctional that anything can set it off - not just mold. Bad smells and I believe in my case food. Or maybe for some reason it's just permanently activated? Shoemaker is calling this chronic and systemic inflammatory response along with capillary hypoperfusion. This seems right to me.

    There may be a distinction between those with CFS and those who don't. My symptoms are almost entirely neuro/immune/endocrine. PEM is not a big factor for me.

    For those interested, the tests that Shoemaker monitored:

    C4a
    TGF Beta1
    MMP-9
    ADH

    In particular, the C4a and TGF Beta bounced all over the place. He could not keep them down. I am assuming that once I am exposed these things spike.

    Shoemaker has suggested that I get tested for XMRV. He also believed that VIP (Vasocative Intestinal Peptide) would help once it's out of clinical trial. Procrit is also supposed to help but there are risks with this.

    From my experience I would say do everything you can to avoid mold but I question how extreme one should get in the avoidance. There's a chance that it won't help much more than reasonable avoidance.
     
  2. slayadragon

    slayadragon Senior Member

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    It's interesting to look at people who don't have the mold susceptible or multi susceptible genes but have CFS. I've not encountered many of them so far.

    In theory, those people should be able to clear the mold from their systems. So perhaps they do not have the "build up" that CFSers who cannot do it through the immune system seem to have.

    That would be in line with the idea that these people might have big reactions to large amounts of mold exposures, but not as much to small ones.

    The more I look at the recent research and think about this topic, the more it seems to be that what we have is an "induced reaction" to various substances, including mold. Our systems seem to be primed to go nuts with the inflammation any time we get exposures to "bad stuff."

    It also seems like our systems are not very good at detoxifying anything, at least through what Rich calls the "main" (non-immune) channel. Part of it may be the methylation/glutathione issues that Rich has discussed. Part may have to do with detox enzymes, as Dr. Cheney has discussed with the P450 being decoupled.

    (I really wonder if our bodies are supposed to be able to detoxify mold at least somewhat through the methylation/glutathione channel as well as the immune system. That would be consistent with my own experience that this stuff is "supposed to" be broken down in some way rather than excreted intact. Normal people do not react to the mold toxins being excreted in their perspiration, for example! Dr. Cheney is no mold expert, but he seems to think that the P450 decoupling is related to mold.)

    I would think that if people who are able to detoxify mold through their immune systems get a relatively big hit of mold, it may take them a while to detoxify it. That's what Shoemaker says, actually. That normal people who work in a really bad building may feel effects, but get over them as soon as they get out.

    If someone is abnormally affected by any toxins (e.g. through the presence of XMRV), that big hit might start a huge inflammation response with a downward spiral (of the type that Marty Pall describes) that might take a while to subside. And for CFSers, once that kind of inflammation starts going, just about anything (foods, chemicals, emotional stress) seems to exacerbate it.

    So, just following the logic, perhaps people who don't have the mold susceptible genes can quickly process a small hit before the inflammation starts going and not notice or be affected by it. But if they get a big hit, that might trigger the inflammation downward spiral.

    My experience is that figuring out how to stop that downward spiral (what Erik calls "break the response") once it starts seems paramount. In my case, because (apparently) I can't detox mold, getting my mold exposures down super-low seems to be the key. But for people who can detox mold, maybe other measures can work better.

    Erik's mountain climbing tactic, described in Mold Warriors, seems like one "emergency measure" that seems to work for people, for example. I wonder what other measures, in addition to getting viruses under control, would work for those people.

    The current thinking on CFS is that XMRV and/or other factors cause us to have systems that are primed for inflammation for very little reason and that can't detoxify. So in theory, getting the XMRV and/or other factors under control should help us.

    Indeed, after eight months on the Valcyte, my mold reactivity is far lower than when I started it. This drug specifically targets just herpes viruses, but I tend to agree with the idea (posited in AIDS) that HHV6a serves as a sort of helper/exacerbator for retroviruses such as XMRV or HIV.

    Dr. Guyer's (and StormySkye's, if people know her) belief is that if you can get the immune system out from under a chunk of these pathogens, detox and/or avoid a chunk of the toxins, and support the system, it becomes strong enough to keep even the worst bugs in check. That's increasingly starting to seem right to me.

    I also think that even for those of us who are extreme reactors to mold, there is a lot of underlying toxic stuff going on. For instance, now that I've detoxed a whole lot of (apparently) mold with the cholestyramine and am not getting reactions to small amounts of mold (at least on objects or in buildings), other things seem to be coming up.

    For instance, I still get big responses to things like ALA and brown seaweed, which appear to detox mercury. CSM, which used to be really intense for me, now doesn't seem to give me much of a reaction at all.

    Recently I had a terrible reaction to a pot of fresh broccoli soup (repeated vomiting), and it feels to me like that was pesticides rather than mold. All produce was tasting terrible to me for a while, actually. After I started thoroughly washing it with Dr. Bronner's Unscented Magic Soap (mild but thorough), it's all been fine.

    I also had a bad experience with something "blowing in the wind" from Mexico while in southern NM. A severe Moldie friend of mine said that she wasn't bothered by it, so I'm wondering if it might be some other kind of bad chemical rather than mold.

    Maybe people who are able to detox mold (and Lyme) through their immune systems tend to have problems with other sorts of toxins, like mercury or organophosphates, and would benefit from working on those?

    This is all very complex, and no one has all the answers.

    It does seem to be very peculiar that a very few of us (with Shoemaker the only medical professional in the bunch) are the only ones even asking the questions yet though.

    Best, Lisa
     
  3. slayadragon

    slayadragon Senior Member

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    Ace, thanks for your note. I asked about where you live because I'm trying to get a sense of what locations seem to be non-starters for any CFSers (or at least ones with the mold or multi genotypes). The ones I mentioned above (England, Bay Area, Texas/Louisiana) seem particularly problematic with regard to mold. I do wonder about Boston too, since a CFS epidemic once was reported there.

    But you reminded me that you live in a place that I visited after seeing Erik and starting extreme avoidance, and during a rainy period of time (mold gets worse in bad weather). The outdoors felt good there. So I don't think that the outside air is your problem, at least as far as mold goes.

    Out of further curiosity, how severe is your CFS? My increasing belief is that the reason that mold is so problematic for CFSers is because it's the toxin that we come into contact with the most. In small amounts, it's pretty much ubiquitous.

    But if someone weren't bothered by small amounts of mold toxins, that would give him/her a real leg up in terms of being able to remain less severely affected, even if XMRV and HHV6a and whatever other bugs were causing inflammation to go nuts whenever other types of irritants were encountered.

    That actually sounds like what Floyd is suggesting, actually. That even foods (which now don't bother me, except for produce that's not super-washed) bother him more than moderate amounts of mold exposures.

    Maybe looking at the viral issues indeed would be worthwhile in that case. And for someone without a lot of extreme mold reactivity, perhaps antivirals even (as occurred for me when I was in the Godforsaken Desert) might be relatively tolerable to take.

    Best, Lisa
     
  4. slayadragon

    slayadragon Senior Member

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    Something just occurred to me.

    The reason that Erik was able to climb Mt. Whitney all those times is because he figured out that if he could get his level of mold exposure low enough, his post-exertional malaise and exercise intolerance would go away.

    Because his mold reactivity was so high, he had to take really extreme measures (doing thorough decontamination and only exercising in really pristine places) for it to work.

    This seems to me that it's so thoroughly correlated that it can be taken as a "marker" for whether people are getting more mold exposure than they can tolerate.

    People who are really intolerant likely won't be able to exercise anywhere. People who are somewhat intolerant might be able to exercise some places but not in others (e.g. a moldy gym).

    If people are less able to "exercise" (whatever that means) in their own home than elsewhere, that may be a good clue that their home is problematic.

    It would be interesting to look at those non mold or multi susceptible CFS patients to see if they indeed to have less exercise intolerance than the rest of us.

    This is starting to make more sense then.

    It just takes time and mental functioning to figure out, maybe.

    Lisa
     
  5. jewel

    jewel Senior Member

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    what tests prove poor response to mold or genetics that affect ability to detox mold? I tend to feel this describes me, but have no proof, not even consistent allergy testing to molds, but feel sick almost immediately in musty places. And yes, i live in the bay area. Why is this area specifically bad? Thanks, J.
     
  6. Gerwyn

    Gerwyn Guest

    If the virus is acting as a pseudogene then we are talking about changes in gene regulatory mechanisms.No environmental manipulation will ever be curative.They could be palliative different things could be helpful to different people.Mold (I,m not sure how you are defining that) could be one of the results of viral infection but treating it will have no effect on virus titre whatsoever.That I,m afraid is scientific fact.Working on the gut is not an antiviral treatment either but can help partially alleviate the deleterious effects of the virus.Downstream problems don't cause the virus to flourish.The virus causes the downstream problems to flourish.Eliminate the virus and there are no downstream problems.The only known way of doing that is antiviral drugs. It does not mean that you cant alleviate the downstream problems.Mold being one of many problems that the virus could potentially contribute to.
     
  7. jenbooks

    jenbooks Guest

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    The operative word is "if". These are all assumptions, and even if proven out, will only be true in the portion of CFS/LYME/ME that carry the virus--and mysteriously so for them as there are many health carriers supposedly.

    Perhaps there is a one-two punch with the virus, and another synergistic helper virus is required. The virus is necessary but not sufficient. I don't mean its immunosuppressive and allows downstream pathogens to flourish. I mean it might only destroy with the work of another virus in tandem. Which hasn't been figured out yet.

    And it isn't a universal cause, even if proven out in some ways--which will take work.

    Do you think there are only three human retroviruses? They are all that's known. There may be twenty.

    And "if" Lisa went from bedridden up to 22 hours a day, to relatively healthy, able to hike, tolerate antivirals, etc, by avoidance, it's worth considering mold as more than downstream.
     
  8. Gerwyn

    Gerwyn Guest

    saying that people have mold sensitive genes is a ridiculous statement.you are entitled to your belief but there is no science to support it.some people are indeed allergic to mold whether they have ME or not.
     
  9. slayadragon

    slayadragon Senior Member

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    These are all really interesting points.

    I'm a bit wiped out at the moment from detox, which is (apart from when I'm not able to get away from mold enough) my only remaining symptom that's problematic. It takes me an hour or two in the morning before it fades.

    I have lots of thoughts and will share them soon.

    Best, Lisa
     
  10. BEG

    BEG Senior Member

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    What about house plants? I have 4 (large) plants on the floor and several moderate size on the windowsill and outdoor room. I've thought about possible mold in the dirt. But I've also heard that house plants clean the air. What to do? Keep or get rid of?

    Thanks,

    BEG
     
  11. Gerwyn

    Gerwyn Guest

    there is no such thing as a mold sensitive gene or a multigene of any kind. That at best is pseudoscience.some people are sensitive to mold but that has absolutely nothing to do with ME
     
  12. Gerwyn

    Gerwyn Guest

     
  13. Gerwyn

    Gerwyn Guest

    Can i ask the moderators what this is doing in an XMRV section please.There is a general treatment section.this has nothing to do with XMRV at all
     
  14. dannybex

    dannybex Senior Member

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    With all due respect Gerwyn, as you are always interested in stating things as 'fact', how can you say for certain that mold has 'nothing to do with ME'?

    Erik Johnson, as one outspoken example of the Tahoe cohort, would strongly disagree with you.

    ME/CFS may have dozens of contributing factors. Our environment, the 'foods' we eat have become increasingly inundated with a plethora of chemicals, pesticides, molds, fluoridation, heavy metal contaminations (in vaccines, etc.) that weren't around 50-60 years ago. In the meantime, chronic illness has exploded.

    There may be a connection, and I for one, think at least in some cases there is, and should be a part of any comprehensive discussion of ME/CFS.

    Respectfully,

    Dan
     
  15. Dreambirdie

    Dreambirdie work in progress

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    What Dan said.

    There is a LOT we don't yet know for sure about CFS. The "facts" are not set in stone yet.
     
  16. Gerwyn

    Gerwyn Guest

    There is no scientific evidence that there is a connection.Some people have allergic responses to mold

    That is a scientific fact.That mold has any role in causing symptoms of ME is not.Everything should be discussed if people wish to.This section is for XMRV. Treatment options have a specific section and that in my view is where this thread belongs.What I object to is comments like mold sensitive genes which are simply not true.Everybody is entitled to their beliefs. They are not ,in my view, entitled to claim scientific evidence in support of those beliefs when there is none
     
  17. Gerwyn

    Gerwyn Guest

    Agreed but something should not be presented as factual when it is clearly not.There is no such thing as mold sensitive genes.In my view we have to be consistent and apply the same criteria to all kinds of "evidence". we encounter.if something is presented as having a scientific basis or proven in a scientific study and the evidence is either suspect or anecdotal then I will say so.There are too many vulnerable people who don't know how to tell good evidence from clever marketing for me not to do so.If something is presented as a belief and anecdotal then I have no problem with it. If people find something that helps them wonderful!When pseudo science is thrown in as a form of camouflage the n I, m afraid I do
     
  18. dannybex

    dannybex Senior Member

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    I don't know about genes, but the fact that some people may react, or as you say have "allergic responses"(?) to molds, may just stress or burden their immune systems enough, to make them more susceptible to chronic viral infections.

    Of course XMRV may play a part as well, but if discussion is shut off regarding other possibilities, then folks reading these threads may not hear about these possibilities. XMRV may indeed be the reason that other infections become chronic, but it may also be due to chemical, environmental, and other factors.

    But we'll have to agree to disagree I guess.
     
  19. jenbooks

    jenbooks Guest

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    XMRV was discovered in prostate cancer tumors, not by the human genome project, which would only have discovered universal retroviruses inserted into all our genomes and vertically inherited, Gerwyn. There may well be other retroviruses lurking that haven't yet been identified that are communicable in some small portion of the population.

    Save this post, Gerwyn. Talk to you in a year or ten. Clearly you're not interested in evidence-based medicine, but clearly some of us are.

    If mods want to move this somewhere else go ahead but Lisa's point was radical mold avoidance allowed her to tolerate antivirals she couldn't before. Since some folks are jumping on the idea of taking HAART therapy for XMRV...and one on this board couldn't tolerate the HAART therapy even though it helped her...maybe it's relevant. I think it is.

    But this is just why I don't post anymore. Snide, combative, snippy, angry, biased answers (like yours).

    So I will go back to backchannel, where I try to learn and help.

    Thanks again, Lisa.

    Hope you're doing well, Danny.
     
  20. slayadragon

    slayadragon Senior Member

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    Wow, I went away from my thread for a couple of hours and suddenly a heated discussion has erupted!

    This actually is EXACTLY the kind of discussion I'd like to see. Everyone's comments so far (and maybe especially Gerwyn's) are the ones that need to be discussed openly about this topic.

    I'd much rather have someone voice criticisms or skepticism than to have everyone ignore the issue.

    I have a whole lot of comments that I want to insert, and then will look forward to hearing everyone's responses.

    It may be a few hours or days before I get a chance to do so though.

    In the meantime, everyone, feel free to keep posing as many questions or comments about mold and its interactions with XMRV (or lack thereof) as you like. This is turning out to be the most intellectually stimulating discussion on the topic that I've had in quite a while.

    Just please don't tear one another apart too much that no one is listening when I get back or (worse) that the thread gets deleted as some of my favorite ones on ProHealth used to.

    My next posts will include specific comments on the possible relationship between XMRV and mold toxicity. Being able to have this kind of discussion (including critiques of the possibility) is precisely why I put this thread in the XMRV section, and so I would respectfully ask that it be kept here for the time being.

    Be Back Soon!

    Best, Lisa
     

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