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Mold, Dr. Cheney and ME/CFS

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

  1. Dreambirdie

    Dreambirdie work in progress

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    N. California
    Hi Uncle Dan~~~

    I use my Aranizer exclusively to speed up the outgassing process, usually of fresh paint, new furniture or other new items, and anytime I use bleach for cleaning mold. I will actually tape the door of the room that the Aranizer is on in shut, to prevent the very potent odor of "the aran" into other parts of the house. After Aranizing, I will open the windows for at least a day or more.

    I never use my Aranizer as an air purifier. I use a hepa filter for that.


    The company reps will tell you that "the aran" is safe to breathe, but no one I know who is sensitive has tolerated having it running in their living space while they are in it. Personally, it gives me a guaranteed headache to breathe it longer than a few minutes. I don't know if would cause serious long term effects to breathe it for extended periods, and am not willing to find out.

    One last note: An acquaintance of a friend of mine left his Aranizer running for two weeks straight inside his new car, in order to outgas the new car smell. He turned it on with all the windows closed, and went on a trip. When he got back he found that his dashboard was turning to powder. The point here is that total outgassing will lead ultimately to total decomposition. The Aranizer is powerful, so use with caution and don't go to extremes.
  2. dannybex

    dannybex Senior Member

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    Seattle
    EEEK, as they say.

    That doesn't sound good at all. Will look into regular hepa type system I guess.

    Thanks DB. :)
  3. JanisB

    JanisB Senior Member

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    Update on my mold situation

    I posted on my blog (cfsmethylation.blogspot.com) about the experience I had in Costa Rica which showed me how sensitive I am to mold . (I knew I used to be, but as I got sicker and sicker with CFS, my reactivity diminished and I thought I could now 'handle' it.)

    A few days ago I got the ERMI reports for my mother's house and my home. My mother's was 10.6; mine was 16.60. Ugh! I felt excited about leaving everything behind and moving out to Colorado/Utah/Arizona, wherever. The next morning I woke up a bit less enthusiastic as the reality set in of how to figure out where to go, how to find a safe place, etc.

    Today we had a mold remediator come over and, Thank God, he found mold on the floor joists and insulation under the crawl space, and he also found a loose skylight with water coming into the attic and most likely, some mold growth in progress. So we'll have this work done as soon as possible.

    In the meantime, I'm thinking of spending the summer months, say from late May through August, someplace out West. I'm not much for camping, since with almost no vision once I take out my contact lens, I'm too blind to walk outside to find a bathroom, plus with only one eye now I'm unsteady on even ground. So I need to get other suggestions.

    The idea of going to a pristine environment for 3-4 months appeals to me as a chance to start trying Welchol or CSM and see how I do on it. I've heard of too many PWC's who can't tolerate the stuff, and Shoemaker is absolutely insistent that it's not worth bothering to try if your environment has an ERMI greater than minus 1 (due to my low MSH).

    The other question I'm asking is whether there's any chance/hope of getting myERMI 16.60 home down to minus 1 when all the mold growth the remediator saw was old and dead. It makes me wonder why my house is so high when I go into lots of places (and leave right away) that smell moldy and my house doesn't smell, yet it's in the 90% percentile.

    Will be happy to get private messages and/or replies to this thread.
    Janis
  4. what has worked for me

    I've been sick 14 years, tried many things moved many times. Lived underneath a carport next to a moldy house. Abandoned all of that and moved onto a sailboat, bought a brand new 28' travel trailer, moved into a forest near asheville NC and built a truck camper out of metal drywall studs and styrofoam and lived inside of that. Went on craigs list and found someone with a brand new house willing to rent me a room out of it for 550 a month. Took my truck camper to a trailer park in el paso, tx. Moved to SW new mexico and built a simple hexayurt:
    http://hexayurt.com/
    made out of styrofoam and metal studs and placed on a cement foundation. Than finally I pulled out all the stops bought a piece of property out here and erected this:
    http://s185.photobucket.com/albums/x74/antares41_41/?action=view&current=house1_2.jpg

    All of the above failed miserably to get me any appreciable relief just kept getting worse.

    Theory was it's not just ambient airborne mold outside that keeps me from seeing improvement but also pollen, grass seed, dust, etc play a large role in the illness. I placed no stock in the biotoxin theory even before I read this article:

    http://www.acmt.net/cgi/page.cgi?aid=12&_id=52&zine=show

    which essentially states that we eat more mycotoxins in common foods than we encouter even in some of the moldiest environments.

    I really enjoyed Mark Crislips interpretation of mold related illness hard nosed and could care less about our suffering but is very intelligent and I believe most of what he said to be true based on fact just not forthcoming as far as some other mechanism that might make mold a causative factor in people with CFS.

    http://www.pusware.com/quackcast/quackcast25.mp3
    And his citations and references can be found here:

    http://moremark.squarespace.com/quackref/#25

    So my theory was some type of reaction similar to allergy or anephlexia where you don't have to invoke "toxins" to explain the reaction.


    I never placed much stock in the ideas of avoidance to the point of absurdity I never threw away a single belonging because I feared it would make me sick other than a computer monitor that had visible mold growing on it which I believe did make me sick. That is where I draw the line. Common sense. If it's moldy and it's plainly visible throw it out, otherwise don't waste valuable resources.

    The idea behind the building in a building is the outer 30x40' building is a shelter that keeps me dry, the inner building made out of metal studs and drywall was to control the environment. At the time I thought I knew it was solely the environment that was causing my symptoms. If I can just close the windows run a filter and keep all that airborne crap outside I will get better.

    Well the experiment failed miserably, I was just as well off sleeping in my car out in the middled of the desert.

    I kept doing worse and worse out here my next plan was to go up north cause where it's snowing the pollen forcast's say .o1 on a scale of 1 to 12. (any decent weather website forcast's pollen now) I'm still thinking it's not just mold but grass seed and pollen and dust that are causing my symptoms which are debilitating to the point of where I am not bed bound but not able to work or function in any acceptable capacity. Simple chores I have to force myself to do or they don't get done.

    Toward the end every step I take my stomach hurts cause of the jolt, it's bloating after every meal food reactivity is worse than ever.

    Suddenly I found an astounding I won't say cure but how do I say it, I have never seen such an improvement in my health since I moved out of my first sick (moldy) house.

    I started a gluten free diet which I always dismissed as not worth the trouble. I got three days of bliss almost as soon as I started it but than I crashed so I decided to avoid other things such as milk and peanuts. Got a little better but couldn't reach that high I attained the first three days. So I decided to get more strict in my diet I eliminated all gluten, all casien, and peanuts. I have since tried eating (mixed nuts) and crashed the next day. Tried eating a bowel of rice checks with regular milk and crashed three days, and tonight I had a couple shots of rum I am really hoping I don't crash from this also cause I really like a shot of booze at night to unwind. I've gone about a week without a crash and stuck anally to my gluten casien and nut free diet. I started this about I'm guessing maybe two months ago.

    I suggest for those who have tried mold avoidance but not the strict diet they might consider this in tandem with mold avoidance and for those that have done the strict diet but lapsed in the mold department you might want to do that also cause the symptoms are so close they might be masking each other.

    Sorry for the poor grammar and spelling I'm too tired to do anything about it just had too shots of rum and ready for bed.

    Robert Christ
  5. slayadragon

    slayadragon Senior Member

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    twitpic.com/photos/SlayaDragon
    Here are a couple of comments.

    1. For at least some (and possibly all) patients, ME/CFS involves a hyperreactivity to even infinitesimal amounts of toxic mold and other biotoxins.

    Certainly, it seems like if you remove all the growing mold from your home and if you don't have any mold growth on your possessions, that should be enough -- within what anyone should be reasonably expected to be able to do -- with regard to getting better.

    That is not the experience of people who have successfully addressed the problem. I've encountered dozens of people in person and on various boards who state that once they get clear, they are made sick by contaminated possessions.

    No one says that anybody has to get rid of exposed possessions or that it's reasonable to do so. We're only saying that insofar as severely ill individuals keep those possessions, they should not be surprised if they don't make improvements.

    2. Insofar as people cannot remediate contaminated possessions, it is even more unlikely that they will be able to remediate a contaminated house.

    The whole reason that toxic mold makes poisons is so that it can coat all the surfaces of the dwelling with it. As a result, other species of mold will be less likely to grow, and the toxic varieties (e.g. Stachybotrys) will be able to spread more freely.

    Even if you remove all the colonies in the house, the toxins will still be there. They will keep other species of mold from growing, and it will keep Moldies from being able to live in the house without getting sick.

    3. Ritchie Shoemaker is a brilliant man (I would argue a true genius) who has done a great service to the ME/CFS community by providing us information through his research.

    His work suggests very strongly that toxic mold plays a role in this illness, and defines some of the ways that it has an effect on us.

    However, I have yet to encounter one ME/CFS patient who has gotten anywhere close to well as a result of following his protocols. Insofar as anyone else has heard of any, please let me know since I would like to include them in the project that Dr. Keith Berndtson and I are doing interviewing people who have recovered from this disease.

    Shoemaker has been successful at treating simple mold illness, which is far less complicated than ME/CFS. While he has some ideas about treatments that might be helpful for ME/CFS, I've yet to see any of them succeed.

    Erik Johnson's protocols, on the other hand, have allowed a great many people to achieve substantial improvements or get to close to full wellness. Certainly, following them is not a reasonable thing to do. I'm not suggesting that anyone do them. I'm just presenting the information as an option.

    On the other hand, I do strongly feel that people who are living in a bad environment should move or remediate even if they choose not to pursue anything more "extreme." This may prevent further declines or allow other treatments more of a chance to work. In this disease, even small declines in functioning can be catastrophic, and small improvements can make a big difference in quality of life.

    4. Avoidance does not require camping!

    Erik's suggestion with the camping is to get people unmasked from the mold, so that they could prove to themselves that it was having an effect on them and so that they could better find it when they return to civilization. He did not encourage anyone to go camping permanently. I'm not suggesting it either.

    If people cannot or do not want to go camping at all, I suggest that -- as Janis has started to do -- they try different environments to see how they feel in them. People with ME/CFS (at least on this board) tend to be extremely good at discerning the effects that various treatments (supplements, drugs, avoidance of foods, pacing, saunas, etc.) have on their health. It's my observation that they quickly become just as good at evaluating their environments, regardless of whether they do the desert "sabbatical." However, in order to do this, they need to start paying attention and trying out various environments. (And, per above, bringing contaminated possessions along will make the differences between various environments much less obvious.)

    5. The presence or absence of odor is not a good predictor of whether toxic mold is present in an environment.

    Some of the worst buildings of all have no discernible odors. Some buildings with strong mold odors do not have any of the toxic variety.

    6. Shoemaker talks about the connection between gluten and mold in his books.

    Mold illness frequently causes people to become reactive to gluten. Even without avoidance of mold toxins, gluten avoidance can give some benefits.

    It would be interesting to find out what percentage of the people who go to alternative practitioners with "minor" problems (ADHD, fatigue, mood swings, lack of concentration) and benefit from addressing candida and gluten are living or working in moldy buildings.

    Shoemaker suggests that for many of these people, the gluten reactivity fades after an extended time in a good environment.

    That's what many people pursuing extreme avoidance have found. Six months tends to be the usual amount.

    Of course, some people have celiac problems and need to avoid gluten for reasons that have nothing to do with mold. And some people may choose to avoid wheat even though successfully practicing avoidance (for instance, to keep a handle on candida).

    There is a definite connection though.


    7. Deciding who to trust is an important factor in whether people make improvements.

    Lots of people have tried to address mold and not gotten better. Others who have tried to address it have gotten better.

    My inclination is to follow the lead of those people who have gotten better from addressing it. My early decision was to follow Erik's lead, and I've yet to find anything that he's said that's led me astray.

    Erik started talking about the role of toxic mold in the disease that later became known as CFS (ME) in 1980, before there were any articles about either CFS or toxic mold in buildings in the literature. He obtained improvements as a result of avoiding it almost immediately after becoming sick with the illness himself in 1985. In 1998, before toxic mold was recognized widely as a factor in human illness and when only a few papers had been written about it, he developed his extreme avoidance approach and shortly therafter shared it with other patients on various boards. Since then, large numbers of patients have implemented the techniques to various extents, and gotten various degrees of improvements. It's my observation that people who decline to follow the basic principles (e.g. choosing not to discard objects that are not overtly moldy or continuing to spend part of their time in moldy buildings or trailers even when in the desert) do not achieve very good results with it.

    Back when Erik first started talking about mold, everybody denied it could be a problem beyond an allergen. Even ten years ago, the journals were full of articles stating that there was "no evidence" that it was a problem. Now there are hundreds of articles that show that, um, yes, it's a problem after all.

    There are still information pieces available that suggest that it's not a problem. That's not consistent with the academic literature though.

    Whether scrupulous mold avoidance would help all ME/CFS sufferers, I don't know. We need more study into this. The main reason that I started writing about mold on this board was not to persuade people to try avoidance, but to try to get research into the phenomenon.

    I've yet to hear of any treatment for ME/CFS that has helped everyone who's tried it. With this illness, even moderate improvement amongst a fraction of patients is usually considered a big success.

    That being said, I've yet to hear of anyone who's tried Erik's approach according to his instructions -- including getting unmasked in a really good place -- who's not experienced substantial improvements.

    But again, it only works when you follow the instructions. That's part of why I spent so much time compiling them into a book.

    And again, I'm not promising anything or suggesting that anybody do anything. I'm just providing information, because it seems to me that it's the right thing to do.

    Best, Lisa
  6. JanisB

    JanisB Senior Member

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    Robert I'm really glad you went on a strict gluten-free diet because I do know that most people are not careful enough in this department. The irony is that all it takes to 'know' is a simple genetic test of the HLA DQ which must be done at enterolab.com because other labs only look for the DQ2 and DQ8 which are associated with celiac, but enterolab, thanks to the open-mindedness of his CSO, Dr. K Fine, has been studying the relationship between all DQ types and non-celiac gluten sensitivity as well as other conditions such as microscopic colitis. The bottom line is that 33% of the population have DQ types that make the immune system respond to the presence of gliadin with the same attack reaction it would use to respond to ingested viruses and other pathogens. Hence, even though such individuals do not get bowel symptoms, they are still experiencing the immune activation cascade, which leads to elevated cytokines and eventually low regulatory hormones.


    Be sure to read labels carefully. Rice Chex is not gluten-free. It is sweetened with barley malt. Italian researchers showed in c. 2003 that "1 mg a day of gluten keeps healing away" -- a reaction which makes sense given that we want our immune systems to respond to 1 mg of virus, parasite, bacteria, yes? -- and in 66% of us, the HLA DQ is unable to distinguish gliadins and other gluten-derived peptides from real pathogens.
    Casein (in milk protein) has other reasons for the reaction, and anyone gluten sensitive or with high glutamate or with excitability or with digestive issues usually needs to stay away from it as well. I did this for 3 years, then was able to enjoy goat dairy, and after 10 years am finally able to tolerate an occasional bit of cow dairy without getting symptoms, although I know it isn't in my best interest to indulge. But hey, we sometimes don't act in our own best interest...

    Thanks for all the links. I do think your journey proves Lisa's point rather than disproving it -- viz, carrying contaminated stuff around with you doesn't eliminate the external toxic burden. Comparing my ERMI test with the one done in my mother's house, there was a kind of mold DNA localized to Ohio which one of us brought into her house on our clothing, shoes, whatever and, although higher at my house than hers, was in a fairly high range. None of her belonging or mine have visible mold or smell moldy.




    Also want to add that, when people first go gluten free, it's best to avoid all grains for the first 2-3 months to speed up healing.
    Janis
  7. JanisB

    JanisB Senior Member

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    Hopefully I'm not beating this gluten point too hard, but...
    Lisa wrote:
    Shoemaker, as brilliantly innovative has he has been with CIRS and its various manifestations, has used standard medical ideas to address the gluten link. He requests serum anti-gliadins and transglutaminase to check for gluten sensitivity. Yet these tests have been known for over 10 years to catch only a small portion of people with reactivity, due to the fact that the reaction occurs in the gastrointestinal tract and especially in the brush border area of the small intestine, so to get this stuff in serum, it has to leak out of the gut or gliadins have to escape the gut and cause the white blood cells to start the reaction.

    In addition to enterolab.com, which has been studying ways to assess gluten sensitivity through stool testing, Cyrex labs is not offering a panel of saliva tests. In my opinion, getting the HLA DQ is the most valuable test, although the others can help you determine how bad you are and help you monitor how much progress you are making. Most of us can figure that out by the way we feel.

    Anyone with a susceptible HLA DQ to gluten who continues to eat it, even in small amounts, is just adding fuel to the fire. Surely, as Lisa so eloquently explains, there are many complications in ME/CFS involving viruses, retroviruses most likely, bacterial and parasite infections, mold and other fat-soluble biotoxins, etc. I am a strong proponent of testing what we can, because guessing (even with applied kinesiology and EAV) is pretty inaccurate. I've had more practitioners recommend wheat germ oil to me than I'd care to recount....and even when I told them I was gluten sensitive, they still thought I'd benefit from Standard Process products because of their purity.

    Or because my body was 'testing' for them. I suppose my body, in the hands of an ignoramus, could also test that it wanted to breath mold spores!

    Janis
  8. Hi Janis,
    I am really glad I tried (gf) also. Wish I would have done it 14 years ago when I first got sick or at least 5 years ago. Wasted a lot of my life suffering for no reason at all.

    Somebody needs to put on there blog the meaning of all these acronyms being thrown around so that newbees are not overwhelmed. It's hard to follow a post if you don't understand key elements.

    I was really surprised got the rice checks at walmart and they had a really goofy new age looking cartoon character on the front almost like if they are mocking the people on this diet. It did say gluten free also.

    The websites out there that list all these things really makes it easy. Thank god for google. I just type on the search window "gluten free diet peanuts" and I can find out right away what if anything I should know about them like the oils they use to make them for instance. Somebody's already posted on the subject.

    What's a emri test?

    I've got in a lot of trouble in the past arguing about the need to decontaminate stuff in so I should probably steer clear of this. I personally never got any feedback (consistent and repeatable) from things like my car or my computer or cell phone in contrast the gluten free diet if I screw up I get a really hard kick in the ass nothing subtle about it at all and it's consistent and it's repeatable. Almost impossible to misinterpret.
    Same thing with my original sick house I lived in. And some of the subsequent places I have been but not nearly as distinct as this diet maybe cause I mostly have the mold factor out of the way which makes it less confounding to recognize the gluten sensitivity. I think another factor is weather your exposed to mold or sensitized to gluten the longer it goes unchecked the more the condition compounds over time. I was really really bad when I finally broke down and went on this diet.

    A little over two months ago I would spend maybe 4 hours in front of the computer than the rest of the time I was too vegitative to do anything but watch tv and sleep. Now I am getting up at 8 and going all day till about 11:30. No two hour naps after lunch, no laying in bed just cause I am to vegetative brain fogged to do anything no suicidal thoughts.

    It is utterly amazing. That is how I found this site and this thread or one similar to it. Lisa was asking who's gotten better and what they did. I was goggling to see how many people know about this (gf correlation to cfs) and ran into this site.

    >Also want to add that, when people first go gluten free, it's best to avoid all grains for the first 2-3 months to speed up healing.

    I've got to have something with pie doe, some type of pastry, cereal that's not made from corn or rice or I am going to go nuts!! Not going to quit the diet just going to loose it.


    Robert
  9. Thanks Lisa for the long reply, it's going to take me a little longer to get back to you. I have been doing chores all day my hip is hurting (bad joint) can't sit or stand on it anymore and need to get off of it which means laying on my side or my stomach.

    Robert
  10. soulfeast

    soulfeast Senior Member

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    Dr Thrasher has interesting info on wet building damage "stew" which includes more than mold and mycotoxins.

    http://drthrasher.org/
  11. We are being disenfranchised from the medical system.

    I have always been of the mindset that every time you enter a new "invisible illness" one not recognized by main stream onto the roster the more unlikely it is to be so. I have always had a hard time understanding how Main stream could miss these things multiple times. In other words I was putting Lymes, MCS, fibro, GWS, CFS, EM etc. under the same roof.

    Yet I have been put in my place by this discovery that the reactivity I have been experiencing has not been solely from mold exposures. Could be I am a Celiac and it was missed, or conversely could be I have a sensitivity to gluten which flies under mains streams radar and doesn't have the ordinary markers main stream dr's look for in which case there are at least two invisible illness I personally know of to be fact.

    My two links, one a peer reviewed paper from ACMPT, and the other podcast from Dr Crislip fly in the face of what your saying. What my allergist told me also flies in the face of what your saying. Not trying to be argumentative but a BIG part of this problem is that it is not understood or even recognized by main stream and my focus in what I post has always been on trying to change this. With recognition will come enormous pressure to do something about it. Without it they can keep walking around with their heads up their @#!ess, living the good life while the millions they are professorially, morally, and ethically responsible for will continue to suffer horribly.

    I don't think this illness will be solved by one or even a few individuals working on their own. I believe it's going to take a lot of resources and a lot of very talented and disciplined individuals.

    I want the truth which takes research, money and talent like what we saw with aids research and before that with the research that lead to the polio vaccine.

    I don't want to take the word of dr's who's work has not passed the muster of the peer review process. (major medical journal not some crappy journal nobody that's anybody reads) Too many out there and too many have conflicting views. I can't try them all I just want people to be able to go to their GP and or refereed to a specialist and get the RIGHT answer that is universally accepted to there problem. Again not trying to be argumentative just what I want.


    http://www.acmt.net/cgi/page.cgi?aid...d=52&zine=show

    http://www.pusware.com/quackcast/quackcast25.mp3
    And his citations and references can be found here:

    http://moremark.squarespace.com/quackref/#25
  12. sally

    sally

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    Lisa please contact me!

    hi Lisa
    this is the only place where i have found you have identical symptoms as me from mould exposure. i have loads to ask and wondered if you mineded helping me and emailing me on daze140291@aol.com. i rented a home thats has since been identified with a minimal of 5 dangerous toxic moulds. whilst living there my symptoms were similar to eriks and the symptoms for aspergillis. however, there is still a mould on our things which alas we cannot save as i react violently every time i am exposed. do you know which mould it is that does not wash off? any help would be so appreciated :O) thank you in advance, at last i feel i am not going in sane.
  13. taniaaust1

    taniaaust1 Senior Member

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    Sth Australia
    I got a shock the other day as I'd been hunting for a doctor who specialised in this mold area for quite while as its one I seem to have some issues in too. (I already have had a mold house inspectator out who also observed issues here).

    The other day when doing a search on medical specialists who specialise on this issue in my state, hardly anything came up but.. lo and behold .. but the one specialist who did come up turned out to be a specialist I see, (the one who deals with my hyperinsulinemia), he also apparently specialises in mold issues and has written some stuff about it online.

    I cant believe my luck :) .. Specialist was right under my nose the whole time

    (trying to sort out heart stuff right now but that mold stuff will be on my list to follow up sometime in the near future)

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