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Cheney's Latest Newsletter

Discussion in 'Media, Interviews, Blogs, Talks, Events about XMRV' started by shannah, Oct 3, 2010.

  1. slayadragon

    slayadragon Senior Member

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    One thing that interests me about the water is the idea not that some water is particularly good for us, but that some is particularly bad for us.

    About two months ago, I had a very bad experience drinking some tap water (made into tea in a nice restaurant) here in the north suburbs of Chicago. I thus spent a good amount of time looking into issues related to water.

    What I found was that cyanobacteria contamination is a potential problem in the water supply even for normal people. For people like me, who are extreme responders to tiny amounts of biotoxins, the idea that it could make me sick in the same way that a bad building makes me sick is wholly unsurprising.

    In looking at the web sites for the community where I got sick on the water, I found that the water is always taken from Lake Michigan. However, sometimes it is taken from a relatively clean source way out on the lake. At other times, on maintenance days, it is taken from a source closer to shore where (they admit) contamination with cyanobacteria and zebra mussels is high.

    They discuss the cyanobacteria only in terms of taste and odor issues. However, the booklet at the following address discusses the potential for toxins to be present in the drinking water supplies as well:

    http://www.HABlegislation.com/system/files/FreshwaterReport_final_2008.pdf

    This book was developed to support the renewal of legislation related to toxic cyanobacteria in U.S. waters. Cyanobacteria is considered to be a major hazard even by U.S. government standards, with the ability to harm and kill people as well as animals.

    There are no standards regarding cyanobacteria toxin levels in US drinking water supplies, and suppliers are not required to monitor its levels. The World Health Organization does have such standards.

    In the early 1990s, a study was done to monitor levels of toxin in various drinking water supplies in various places. Most came up as below WHO levels. More recently, only a few studies have been done, and some of those have come up as above WHO levels. The problem of cyanobacteria in waters has increased dramatically in recent years, and so the possibility that levels in drinking water are higher than the WHO levels in some places is likely, these materials suggest.

    Unfortunately, these toxins are not filtered out of water by conventional technology.

    My experience here in Chicago suggests that sometimes the drinking water is fine and sometimes it is horrific, in terms of its effects on me. If I were unaware of the fact that I was being affected by it, I would attribute my health effects as random "flares" and never suspect the water.

    Summary point: the idea that structured waters can cure CFS or keep XMRV in check is nonsense, obviously.

    The idea that bad water can keep XMRV from remaining in check seems to me wholly plausible, based on my own experience.

    Takeaway: Unless people are living in places where they are sure that the water is never contaminated with cyanobacteria, choosing a good source of bottled water and avoiding all products made with tap water (in restaurants and at home) may be a smart thing to do.

    I concede that not everyone is in a position to move out of moldy homes. But switching to bottled water is something that most people can do, I think.

    Best, Lisa
     
  2. mojoey

    mojoey Senior Member

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    I think this applies to many things for ME/CFS patients. If I drank alcohol every night, ate whatever I wanted to eat, continued to exercise--all those would increase oxidative stress and I'm certain each and every action would cause flares, which is the idea behind Montagnier's statement.

    But to extrapolate a necessary precaution into a advised treatment (let alone saying it can reverse an active retroviral infection) is, like you said, nonsense.
     
  3. slayadragon

    slayadragon Senior Member

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    I eat whatever I want to eat, exercise regularly and drink alcohol occasionally.

    I couldn't do any of those things when I was getting biotoxin exposures. I was scrupulous about my diet (no dairy, corn, sugar, citrus, etc. etc. etc.) for years, drank no alcohol and exercised only within my very small PEM limitations. That certainly helped, but it never got me anywhere near to a normal life. It just took the bottom off being sick.

    Now, insofar as I'm continuing to practice sufficient biotoxin avoidance for my level of reactivity, I have no negative consequences from any of those activities. And omitting them (believe me, I've tried!) has not helped me to tolerate biotoxins any better.

    The cyanobacteria-tainted water, on the other hand, made me sick all by itself. And I mean, really really sick!

    All by itself, drinking this water would push me back into full-fledged ME/CFS again. Just like moving into a bad building would - all by itself - push me back into full-fledged ME/CFS again.

    There is (at least for me) a SPECIFICITY to the biotoxins that makes them worth particularly stringent avoidance.

    Avoiding other things as a substitution is not how it works. At least, it's not how it works for me.

    Best, Lisa
     
  4. slayadragon

    slayadragon Senior Member

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    This is the thing about Dr. Cheney.

    Clearly, he has an intuitive belief that the real problem in this illness is that there's something wrong with the terrain. He keeps looking at bugs (at one point he called it the "Bug of the Month Club"), considering whether they could be the cause, and then eventually going back to look at the terrain again.

    For a short period of time, he seemed to be thinking that XMRV was the only underlying cause. Now that he's had time to chew on it a bit, it sounds like he's moving back to there being something wrong with the terrain again.

    In my view, he's right. There IS something wrong with the terrain. At least, my own experiences clearly suggest that's the case.

    Like most people, he's still fighting with the concept of "anything and everything" being the cause of the terrain problems. So he subtracts anything and everything, and unfortunately sees only a tiny bit of improvement.

    The problem - in my strong belief - is that he's not yet grasped the idea that infinitesimal amounts of biotoxins can have such a profound effect on us in terms of keeping the terrain permanently dysregulated.

    People have no problem believing that tiny amounts of gluten or peanuts or latex can cause people to get really sick or die. Somehow with the biotoxins, it's a lot harder for people to wrap their heads around the idea (even though in larger quantities biotoxins are inherently poisonous to everybody while those other substances are not).

    The idea that a messed up terrain - caused as a result of being poisoned by accumulating large amounts of biotoxins in the system over years of exposure to moldy buildings - would cause retroviruses to go active is wholly reasonable. The idea that you can fix the messed up terrain by drinking structured waters is not reasonable.

    But he's close. Always, always, always....he's so close. And he's been that close for 25 years now.

    Nobody else in this community ever has gotten that close. So I have to respect him for looking in the right place, even if so far he's not focused on the right thing.

    Someday he'll get it.

    Best, Lisa
     
  5. shannah

    shannah Senior Member

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  6. xrayspex

    xrayspex Senior Member

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    u.s.a.
    What was that 3 strikes thread here awhile back? That really captured it to me, something about pathogen/infection, some sort of trauma and genetics, having several key conditions that make us vulnerable to getting a retrovirus, terrain makes sense as part of the equation but not the whole thing.

    thing about terrain is most of the world cannot avoid multiple offending toxins of some sort, natural and man made, and looking at things like the Kyoto protocol and still arguing over global warming and whether its best for business to let companies come in and blow up your mountains and dump junk in your rivers.......well theres really no place to hide.......not that we can't try to keep affording all the best food and water and living space if we are clever or rich enough but in the end its probably impossible......there was a dark comedy about that called "Safe" in the 90s with Julianne Moore
     
  7. slayadragon

    slayadragon Senior Member

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    All of this, yes, absolutely.

    Clearly not everyone who gets extended exposures to Stachybotrys gets ME/CFS. A lot of people don't even get sick.

    Certain genotypes (both the Shoemaker HLA DR ones related to biotoxins and others also related to toxic problems) seem to be highly over represented in ME/CFS patients.

    XMRV is clearly a necessary and integral part of the problem.

    The idea of understanding the role of biotoxins in this illness is not so that everybody can pursue extreme avoidance. It's so that we can better understand the entire problem and thus develop new solutions that will appropriately address the entire problem.

    For instance, if the terrain is so bad that the retrovirus has a really fertile soil, we may find that we can't control it no matter how good our bug killers are.

    In that case, we may need to address the toxic terrain - for instance, by coming up with better detoxification methods. Rich van K and Ritchie Shoemaker have suggested a couple, and they have proved to be somewhat helpful for some people under the right conditions. (Meaning, that they've been helpful for me after I got out of my bad house and into a good environment.)

    Those suggestions (Cholestyramine and Metafolin/FolaPro/Deplin) have included drugs. (Yes, I know, Metafolin is a "medical food." The fact remains that somebody created it in a laboratory, and that we wouldn't be able to supplement it if that research and manufacturing hadn't been done.)

    Maybe if people were more aware that this is a "terrain" problem, more such drugs that would allow us to detoxify better could be created.

    Maybe if we knew that the terrain was a problem, people would find that they could use avoidance as part of their overall efforts (being in a good place AND using detox AND using antivirals), and that they could make progress even if they weren't in a metaphorical tent in a desert. There's a difference between being in super-toxic environment and an ordinarily non-pristine one.

    Maybe if we knew that certain substances in our environment were making us really sick, efforts would be made to decrease the amounts of those substances in the environment by society in general.

    Knowledge is power.

    Saying "I don't want to live in a tent in the desert (or: my patients aren't going to do that), so I'm not going to think about biotoxins at all" deflects the focus from understanding the real phenomenon that's going on.....and thus keeps us from coming up with innovative solutions that eventually will solve it.

    It's quite extraordinary that Erik was able to come up with a solution to this illness at all. He had no resources, only his own observational powers and intelligence.

    People who are the scientists are supposed to take that kind of information and run with it using resources that they have and that other people do not. They're not supposed to say, you're not presenting me with the perfect solution to the problem on a silver platter so I'm going to ignore the whole phenomenon.

    The extreme avoidance is just a stopgap for us.....and a clue for everybody else.

    Best, Lisa
     
  8. Sing

    Sing Senior Member

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    Harmful Algae Blooms

    Lisa Slayadragon,

    Thank you for this wealth of information and ideas! I am going to save a copy of this thread so I can refer to it. (Our threads get lost so quickly in the dust of history.)

    I've had a lot of gastrointestinal illnesses over the course of my life and know I have a weakness now. If there is any problem in the water, it seems I will get sick from it. Currently I have good water to drink from a well 500 ft deep and I'm grateful--it has never made me sick.

    My best hypothesis about what got my problems started is an enterovirus, non-paralytic polio. Polio infections were common where and when I grew up. 10% of my schoolmates were paralyzed as were a number of their older relatives.

    Anyway, I urge everyone to at least skim the article that Lisa provided a link to, about HABs, Harmful Algae Blooms. Here it is again:

    http://www.HABlegislation.com/system...final_2008.pdf

    Sing
     
  9. slayadragon

    slayadragon Senior Member

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    Here's an interesting article about how the honeybees around the world are dying out.

    The problem apparently is caused by a combination of a fungus and a virus. Each of them is pretty harmless on its own, the article says. It's when you put them together that things seem to go bad.

    http://news.yahoo.com/s/yblog_upsho...ntified-in-massive-worldwide-honeybee-die-off

    Best, Lisa
     
  10. xrayspex

    xrayspex Senior Member

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    aw the honey bees, yea that whole thing makes me sad

    hey don't get me wrong though, I sure am trying to figure out what to avoid as much as I can over the years and what to add in to help, just sayin'......I can only do so much, the larger systems that we don't have control over are a big part of the problem, no wonder they try to cover stuff up
     
  11. slayadragon

    slayadragon Senior Member

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    The reason I bring up mold and other biotoxins on this board is not to persuade people that they need to be more careful about avoidance of them.

    It's so that they will bring them up to their doctors.

    If enough people ask their doctors about this topic, then the doctors will realize that it's something that they need to become educated about.

    And if the doctors become educated about the topic, then perhaps we will start to see solutions to the problem that don't involve just avoidance.

    Sometimes, I admit, I do suggest that people pursue avoidance. This is limited mostly to suggesting that people who live in really bad places move out (to keep their health from getting worse) and that people who may already be in a good place try putting aside their stuff from an old bad place (because this can give a unexpectedly large boost in terms of ability to get better).

    That's not why I spend time on these boards though.

    I spend time on the boards because I want to convince the doctors.

    Best, Lisa
     
  12. ukxmrv

    ukxmrv Senior Member

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    Sadly, Slaydragon

    Most of us need our doctor time to educate them about things relevant to us and doctor time is precious to us. We can't use doctor time on issues not directly related or of a small consideration to us personally.

    I do feel that it is imporant to me personally but many other things would be well ahead. You are preaching to the converted here but I don't put the premium on it that you do as it made such a little difference to me compared to other things that I have done.

    Wish it was different but on a list of priorities my own mould avoidance is really, really low.
     
  13. slayadragon

    slayadragon Senior Member

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    The doctor I really want to pay more attention to this is Paul Cheney.

    He's in a position to do something about this.

    And his patients spend the whole day with him when they visit.

    Insofar as other people can manage to bring up the topic with their doctors, that would be great too.

    Best, Lisa
     
  14. ukxmrv

    ukxmrv Senior Member

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    Lisa, I thought Paul Cheney had already been approached by people like Erik J?
     
  15. slayadragon

    slayadragon Senior Member

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    As I've told Erik many times, one element of persuasion involves repetition.

    Most of us have heard of Coca-Cola, for instance. But that doesn't mean that Coke's going to stop trying to remind us of its presence and value in our lives.

    And especially when ideas are revolutionary - it just takes a while for people to believe them.

    Best, Lisa
     
  16. dipic

    dipic Senior Member

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    slayadragon: I see you speak about mold and biotoxins and what not very often. And I understand your reason for it, for the most part (I mean, even just your previous couple posts explain a part of it quite well.) I'm curious, however, and I'm sorry if this has come up before and I missed it, but how much; I mean, how prevalent do you think these things are in with people with ME/CFS? I've always thought (still do) that it's... perhaps not "rare" but certainly not a common thing among "us". I personally have never lived in moldy locations, and even the house I live in now is brand new with no mold problems (and, of course, I'm very sick.) I know I'm just one person, but how many people do we know of that we know (and I know that some people not knowing is an issue) have mold problems? A handful by my count. That doesn't seem very statistically significant.

    So, again, while I realize why you bring it up, I just wonder if it's something that we (us ME/CFS sick) need to really take a closer look at (certainly in a research setting, but personally as a whole... all of us?) or...? Sorry if I'm sounding vague here. I'm trying to figure out exactly what my burnt out brain is trying to ask as I write this. D: I guess it's like 'ukxmrv' said, we have precious time with our doctors that we need to inform them of what we believe is relevant info. Dr.Bell is my former CFS doc and as I'm sure you may know he has since retired from his practice for a while now. He is my only medical connection to the CFS world. The last time I saw my mostly-CFS-ignorant-PCP is 2 months ago... a whole YEAR after I had not seen him once (and I only went so he would continue to prescribe me meds.) He doubled my appointment time so that I had roughly an hour with him. I'm too sick to see him regularly. Can you imagine how much (or, rather, how little) I was able to catch him up to speed on?

    I guess, point is, is this something most of us should worry about? Are there studies linking mold (etc.) exposure to ME/CFS (or is that the point - you'd like to see more?) Forgive my ignorance; I've just seen you bring it up so much (as well as maybe a couple others), naturally I'm curious. Also, wish I had the brain power to better articulate myself and ask more concise questions. Sorry about that.

    Ben
     
  17. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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    Hi Sing, can you repost the link? it's not working.

    thanks!

    GG
     
  18. slayadragon

    slayadragon Senior Member

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    Hi Ben,

    I know that you're having a hard time of it, so thanks for asking about the mold. I'll try to keep my response as succinct as I can.

    There are a number of people with classic ME/CFS who have obtained substantial gains or close to full recoveries as a result of addressing toxic mold. Here is our theory about what is going on.

    Certain kinds of toxic mold (especially Stachybotrys or "black mold") grows in walls where it cannot be seen or smelled. Thus, many times it is present without people knowing it.

    Some people are more susceptible to the effects of toxic mold than others, due to their genetics. After years of exposure, the amount stored in their bodies becomes high. They thus need to be around less and less of it in order not to get an effect from it.

    Usually, this kind of extended exposure occurs in the home. Sometimes it occurs in the workplace, though less often because people aren't at work for as many hours and may move from job to job (or stop working).

    Eventually the oxidative stress, inflammation and immune dysfunction from the toxic mold add up. Various pathogens - including XMRV, Lyme, herpes family viruses and candida - begin to proliferate. Lots of bad things occur as a result.

    Unfortunately, at this point, people are so sensitive to even tiny amounts of toxic mold that moving to a good place doesn't help. Usually people bring their stuff from their previous moldy residence with them, and this can be enough to keep them totally sick. The mold or cyanobacteria (which acts similarly to mold) in the outside air - or sometimes the cyanobacteria in the water - can be enough to keep people really sick too.

    So there are at least two reasons why people may overlook toxic mold as a factor in their ME/CFS, even when it's really important. They may have a toxic mold problem in their house and not know it, and they may be living with toxic stuff or with toxic air or toxic water.

    I lived with a toxic mold problem in my house for 16 years without knowing it, for instance.

    I don't know what percentage of ME/CFS patients have toxic mold as part of their histories. It certainly may be that other factors contribute to the tendency of XMRV to stay active. (I do think that XMRV is an essential driver in the illness, by the way.)

    My main goal in bringing this up is indeed to get research studies looking at the role of toxic mold in ME/CFS. So far, there have not been any that have even looked at the connection.

    Just yesterday, I got the following note from Dr. David Straus, a professor at Texas Tech who is widely recognized to be the leading researcher on the health effects of Stachybotrys:

    >Lisa- I have often thought that CFS could be in part caused by trichothecene inhalation because the symptoms are so similar. But I have seen no data supporting this idea. It would not be too difficult to study because we have tests that can show the presence of these toxins in bodily fluids so samples from CFS patients could be tested along with their houses or places of school or business to see if there is a correlation. Of course it is also possible that the viruses talked about tin the various papers could also cause CFS. Indeed, there may be several causes of CFS and there may even be different diseases that are classified as CFS and they may have different causes. I hope this has helped you. DCS

    I think that he's right that a study looking at whether ME/CFS patients are more likely than average people to have high levels of Stachy toxin (trichothecenes) in the blood would be a good research methodology. Including XMRV status as confirmation would be a good addition to the study.

    It would be really great if an ME/CFS researcher with a screened population of blood samples of patients would be willing to allow testing of trichothecene levels, since then the only cost would be the test results and making sure that the paper is in publishable form. If I could find someone willing to consider such a project, I might even be able to get a bit of money for it, since there are at least a few people interested in looking at mold illness in general.

    This doesn't necessarily help people who want to get well now. Then again, all of the ME/CFS treatments that have any potential of getting people really well are totally experimental too, and with a much lower success rate than this one.

    Insofar as someone were interested in exploring this, I would suggest the following: consider moving to a location with good outdoor air (I can help with that) into a place without a toxic mold problem (this is trickier but doable.....a log cabin with no drywall is a safe choice, for instance). Put aside all stuff that was exposed to residences that might have been contaminated. Spend some time there to see if any improvements occur and system strength is gained (this may take six months). Then pursue other treatments - stem cells, antiretrovirals, methylation/detox, Lyme treatment, whatever. The mold avoidance is not a substitute for other things, in my opinion - it's a foundation to help the other things work better. And the hope is that eventually, people will be able to live in a wider range of environments - I'm comfortably living in Chicago at present, at least during non-winter months, for instance.

    If people want to have a better idea if toxic mold is indeed an issue for them, then looking at the trichothecenes in the blood or other tests (Stachybotrys IgG levels in the blood and/or Dr. Shoemaker's inflammatory markers) might be a good thing to consider before life altering investments are made.

    Please let me know if you want more information. Thanks again for asking.

    Best, Lisa
     
  19. slayadragon

    slayadragon Senior Member

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