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ME/CFS: A disease at war with itself
We can all agree that ME/CFS is a nasty disease, particularly in its severe form, but there are abundant nasty diseases in the world. What is unique and particularly confounding about our disease is that so much controversy surrounds it, and not only surrounds it, but invades it too.
Discuss the article on the Forums.

Biotoxin/Mold Illness

Discussion in 'Addressing Biotoxin, Chemical & Food Sensitivities' started by soulfeast, Aug 22, 2010.

  1. Dreambirdie

    Dreambirdie work in progress

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    Okay, I strongly disagree with these statements, especially the one I've bolded. I know mold is the centerpiece in your world view of this disease, but really you cannot deny that other chemicals and pollutants affect people's health... especially people who are already compromised with a neuro immune disease and very ultra sensitive because of that.

    Mold is ONE of the nasties. It's not the ONLY nasty that can make one seriously ill. So when I see you recommending excessively polluted places--like Chicago--as any kind of possible options for ANYONE who has CFS, then I gotta say something about it. Because I know Chicago very well. I grew up there. I spent 18 years there. And I would never put it on any kind of acceptable list for those with ME/CFS. The same stands true for the central valley of CA... The air quality in many areas there is absolutely disgusting... and yet you would consider that a better option than the coast, where the air in many places (especially around the Monterey BAy) is actually very good...? What are you thinking?!

    There are many good points in your arguments regarding the dangers of mold and biotoxins. And considering what you've been through in your own life, I get why that issue is such a humungous priority for you. However, there are also some rather irrational conclusions that you come to at times, which I think are based on knee-jerk reactions and fear. And I understand that too.

    My wish is... that I would really like to see a little more META reflection on your reflections about the mold. And a little more in the way of reality checks, before you jump to these bold absolutist conclusions about locations that are best and worse for CFS patients to live in (conclusions based largely on your own personal limited experiences), and about the part mold/biotoxins play in ME/CFS.

    That's just my 2 big cents.
  2. slayadragon

    slayadragon Senior Member

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    If people can find locations that are clean in terms of pollution and that also are not really bad outdoors in terms of the specific biotoxin that I and others have found to be present to a particularly large extent in (for instance) Dallas, that would be ideal.

    If people with ME/CFS must make a choice, avoiding that particular biotoxin needs to take priority.

    Best, Lisa
  3. slayadragon

    slayadragon Senior Member

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    I looked at the map for those towns. Texas is a really big state! I believe you that they're really good places, but it would take a lot of driving to get to them on this trip out west. Maybe in the spring, with your direction, I'll drive back through and sample some.

    Do you know anything about the panhandle? The big city there is Amarillo. My goal is to get from Wichita to Albuquerque and then drive west on I-40 through AZ and into Las Vegas.

    I also agree that other triggers are important.

    Best, Lisa
  4. slayadragon

    slayadragon Senior Member

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    As an addendum to the above, I would like to offer a general objection to the concept that Stachybotrys or other biotoxins are "triggers" for us.

    It is a well known characteristic of arsenic that people who are being poisoned with it acquire a hyperreactivity to it: "Each tiny dose doubles the effect."

    I believe that the same thing is happening to us, with the biotoxins. And while it may well be that various other factors (genetics, various pathogens, other toxins) are making us especially susceptible to the effects of the biotoxins, the mechanism still seems to me to be one of "poisoning" rather than "triggering."

    Over the past three years, my system has released so much poison that I cannot believe that I could have remained alive with it in my body. That I should have come close to death as a result of it is no surprise at all.

    I also seem to have an endless number of viruses in my system. Those are serious problems too, and need to be addressed if I am to become wholly well.

    The pathogen part of this disease certainly needs to be considered. The idea that we are just being poisoned by biotoxins is way too simplistic.

    However, describing the toxic component as a "trigger" often leaves the impression that we're going to be able to get totally better just as a result of addressing the pathogens, without doing anything to address the toxins buried inside us.

    This does not seem like a strategy that has much hope of success. Attempts to control other pathogens without addressing the toxicity have not worked terribly well, and I see no particular reason to believe that attempts to control retroviruses without addressing the toxicity will work terribly well either.

    It's certainly good to see people make improvements, but that's not the same thing as getting well.

    Best, Lisa
  5. Tree

    Tree

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    it's the indoors AND the outdoors

    I've read this thread with a great deal of interest, because like so many of us here, I have struggled to find the right geographic location AND a dwelling that won't kill me. And I've lived in many of the places mentioned in the thread. My two cents worth:

    I was born in Wichita, grew up in eastern Kansas, but was living in Albuquerque when I fell ill in 1985. I had severe MCS along with the onset of my illness, which showed up as viral in nature back then (altered white count with a distribution of wbc's that mimicked mono, but negative on a specific mono spot test.)

    I could not improve in Albuquerque. Back then, the late 80s, not sure about now, there was such a huge brown cloud of winter pollution every year, I could not breathe. My MCS extended to the air pollution going on outside my windows. I was living in a pretty great dwelling, no mold issues, very sparsely furnished, cleaned with only baking soda and other nontoxic cleaners. My allergens then were dust, dog, and tumbleweed. But I could not improve there.

    In desperation to help me get better, my mom piled me into the back of her station wagon and drove me to my aunt's very nice home in Wichita. First of all, the trip nearly killed me. I was much too ill to travel, and travel continues to be the most debilitating thing I ever attempt to do. I don't know if it is being in the car, or being in motion, or being jostled or what, but travel slays me.

    I landed in Wichita in not very good shape. My aunt's guest room was in her basement, which was not moldy, but was furnished with a lot of dust-holding flouncy kinds of fabrics. I could not believe my mother had removed me from my NM dwelling to this room without telling my aunt to strip it bare, etc. I went into such severe brain fog, I only lasted two days, maybe, before my mom drove me back to Albuquerque. Like Dreambirdie returning to her cottage, I was never so glad to see a place in my life, even though I could never get better in Albuquerque. At least my dwelling there was set up in the right way for me. All the crap I experienced on the road to Wichita and while there only worsened me. And I agree that Wichita is probably a pretty good place, IF you have the right dwelling. For one thing, the wind blows quite a bit. Most of the places I've felt the best have a lot of wind blowing through regularly. But yes, the skies everywhere have changed due to chemtrails. As child, I'd lie on my back and gaze at the sky. Wichita was called "The Air Capital of the World" because of all the airplane manufacturers there. My dad worked at Boeing and Learjet, and a lot of people had planes. The air was clean and clear, and the skies were fantastic. Not so anymore.

    After three years of no progress in Albuquerque, I moved in 1988 to north Florida, Tallahassee, where I'd lived previously. I flew there, and upon landing and breathing the air, my body went, "Ahhhhhh." I'd come from the cold and polluted and high-altitude winter air of Albuquerque to the warm and humidified near-coastal air of Tallahassee. I loved it. Energy returned to me. I was able to return to the workforce. I could sing in bands again. I felt really good for a year, until my office moved to a newly constructed building, and that new building construction slayed me. I relapsed badly and then everything began setting me off. My apartment got Bhopaled by a landlord spraying pesticides that came up thru the vents and made it uninhabitable for weeks. After four years in Tallahassee, I was now struggling to hold on to my job, fatigued beyond belief, had the return of my FUO (fever of unknown origin) and just boxed in and out of answers. Probably by then, the area molds and allergens were also affecting me. My sinuses were chronically infected.

    So after four years in that location, I moved to Chapel Hill, NC, which was one of the best places I've lived in terms of how I felt. I had energy, lived in a great dwelling, was at near sea level, there was no air pollution, and I hardly felt ill at all that year, as long as I rested a lot every day after work and on weekends. I only stayed a year, and maybe if I'd stayed longer, eventually things there would have begun to affect me.

    I then moved to northern Colorado where I live now, and I couldn't disagree more with the statement that living north of I-70 is a good thing. Ever since landing here (due to husband's job, we didn't have much choice), I have felt much, much worse. There's not much mold in the natural environment here, but buildings and dwellings must have it, because this is where I developed my aspergillus severe sensitivity. In addition, the air quality all along the Front Range, which runs north-south from Pueblo up to Wyoming, and includes my town, well, the air quality is horrible. And we even get a lot of wind much of the year. But there is something about these cities in the interior west, like Albuquerque, the big cities of Arizona (I lived in Tucson for a year before getting sick), and now Colorado (and I'm not in Denver, but in a midsize city an hour north of there) -- the temperature inversions in the winter along with the dense populations create terrible air quality. I don't know how ANYone with ME/CFS or MCS could ever get better in those conditions. No matter how great the dwelling, that outdoor air contains all the chemicals destined to drive us to ill health. The answer for me is definitely not just mold avoidance. Indoor and outdoor air quality has everything to do with my level of functioning, as does altitude and humidity.

    While living here in Colorado, about ten years ago, I had to go to the Hill Country of Texas to keep my mom company for a month. My parents at that time lived in Fredricksburg, Texas and just as I felt when going from Albuquerque to Tallahassee in 1988, I instantly felt better going from Colorado to Fredricksburg. My parents' house was a good, pretty non-toxic dwelling, AND the air quality there was fantastic. Nothing got set off for me in the time I was there (March of 2000). I had such amazing energy. I could go out for a drive every day, I could shop in a store, I could go out to eat. I still had to be careful, but I had that Chapel Hill feeling, and the initial Tallahassee feeling. Energy. Better.

    If I could live anywhere right now, it would probably be that Hill Country. I've never forgotten how clean the air felt after a spring rain.

    So, I think that for me, the change itself can sometimes be beneficial, IF it is to the right place -- which for me is apparently sea level, moderate humidity, and non-polluted air. But after a while in one of those places, Tallahassee, I began to get sick again. And might have had the same reaction to Chapel Hill and Texas had I stayed there long. So, in a sense, change can give me a temporary lift, at least. UNLESS it's a move to the wrong environment. I will never forget that hellish trip to Wichita which set me back for months, and how glad I was to return to New Mexico.

    As for now, I just live it out in my Colorado place. My dwelling isn't that great, and feels pretty toxic. I'm going to get some AFM Safecoat products to help seal things. But I don't have the luxury of picking up and moving. And travel itself is so debilitating that I think ANY move right now would be far more injurious than helpful, even if I were moving to the Hill Country. I just couldn't do it. All the toxins that JenBooks mentions are the same ones I have trouble with, so motel travel is the worst for me. Like DB, being in cars is hard on me, too. I may not ever fully recover where I am now, but I won't be plunged into something worse by the travel. I haven't been able to work in 15 years, since we moved here.

    Just wanted to correct the perception that northern Colorado is so great -- it really isn't, imo.

    And Wichita is only good if you're in the right dwelling. From my point of view.

    And the Hill Country and Chapel Hill were both great.

    That's my two cents.
  6. Dreambirdie

    Dreambirdie work in progress

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    Thanks Tree for writing up your experiences in the many different locations you've lived. That was interesting to read... especially the part about Florida. Very few people I know do well there, but it probably depends on the exact location and amount of indoor/outdoor pollution in the immediate vicinity.

    I lived in Colorado too (Boulder) for 7 years, and that's where my health fell apart. Though in my case, I don't attribute it to toxins or mold. I lived on the far west side of town right up against the Flat Irons, and the outside air was pretty good there, as was the inside air of the house I lived in... at least until they re-carpeted my little rental, but by then I had already been very sick for a couple years. (This was long before I knew anything about Environmental Illness, so I didn't even get it that the carpet had been a problem, until years later.)

    In my case the BIG initial downfall came after getting a mercury amalgam filling, (in 1977), which made me feel very ill for several months, before I finally crashed into horrendous exhaustion with a severe viral onset version of CFS. (This was a very stressful time for me so I'm sure that played a big part too.) I did not know ANYTHING about the dangers of amalgams back then, and so that filling stayed in my mouth until the 1990's, when I finally found out how hazardous it was to have mercury fillings and had it and another one removed. I've dealt with heavy metal issues a lot since then.

    Colorado was the place where I was struck by lightning (in 1979) and that of course also had drastically negative consequences for my health, especially my nervous system, which has been very fragile since then. When I spoke with this guy who ran the lightning strike survivor's group (in Florida in the 1980's) he told me that people who were struck by lightning often developed a CFS like illness. In my case I already had CFS for 2 years prior to the lightning strike, and that just exacerbated it, and made all my symptoms much worse.

    I agree that it's both the INSIDE and OUTSIDE air quality that are important for recovery from CFS, as well as so many other factors, mold being just one on the long list. It really depends on the individual's sensitivities, as we are all unique, and there is no silver bullet answer that works for everyone.
  7. Tree

    Tree

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    Mold didn't make me sick

    Dreambirdie, mold isn't what set off my illness, either. It certainly exacerbates things now that I am sick, but I had no mold in my environment in Albuquerque in 1985, and didn't even show any sensitivity to it when tested back then. I don't doubt the extreme and severe toxicity of it as another load on us. I continue to think this illness is viral in nature and that we have multifaceted reasons for our immunity getting down and falling prey to the virus -- in your case, the amalgam filling, in my case, I think it was a series of events in my life in the few months before I fell ill that severely depleted my adrenals and just wrecked me. Your lightning strike experience has always amazed me - mon dieu! I can't even imagine how that would shatter and wrack one's nervous system and set off all kinds of misfirings.

    I just can't agree that if there are a number of elements to consider in a move for one's health, that mold must always be the priority. Maybe that is true, clearly that has been true, for some people. But I think we are just all too individual to fit into strict prescriptions such as that. Mold is hard on me now, but not as hard on me as summertime ozone levels that make it impossible to be outdoors, or wintertime pollution. It's true that air pollution is hard on everyone and not particular to our illness, but pollution is much harder on the already-ill. Couldn't we say the same thing about mold? That it is usually hard on everyone, if they are exposed long enough? But it will affect the already-sick much worse? I certainly don't have the experience and expertise about the mold issue that others here have, but I just don't understand having a sole focus on one thing to the exclusion of so many other things. I guarantee that my sensitivity to cleaners and motel furnishings and chemicals is as debilitating as mold exposure, so traveling to escape mold would be like shooting myself in the head to avoid getting struck by an arrow.

    JenBooks, that is so interesting about the differences in altitude in the Hill Country. I had no idea the altitude varied so much there. I have been to Abilene but don't recall how I felt there, but can imagine it would be good. Wide open spaces and the wind blowing! That's amazing how you have found the climates in Georgia to vary so much according to location. I remember Georgia well from my years in Tallahassee -- and Atlanta would be hard for me, I know, but I think Macon would be decent. It's amazing how different things can be just an hour away. Like you said, microclimates! I wish I could find a place an hour from where I live now where I could go to just rebuild and feel better, but so far in my explorations here, I've not found anywhere in northern Colorado that works for me. I do feel better in southern Colorado, south of Pueblo, where there is nothing but wide open spaces for hundreds of miles along the plateau, all the way down to about Las Vegas, New Mexico. I wish you much luck in finding a safe and good landing place. Your experience in NYC sounds like such a nightmare; as a writer, I was struck by how great that apartment must have been, as you said, a writer's dream - upper WS, the view, etc. -- and the upheaval and loss would be more than I could take. I hope you will find the right location now, free of mold and other toxins, and with the right climate and altitude and enough other good things going for it.
  8. Dreambirdie

    Dreambirdie work in progress

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    Touche! This is EXACTLY how I feel too. Very well put.
  9. Wayne

    Wayne Senior Member

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    Hi Tree, Hi All,

    Tree, thanks much for your lengthy post on some of your traveling experiences, and how different areas affected you so much. I found it to be a rather fascinating read.

    I can certainly relate to your mentioning a "series of events" that preceded your becoming ill. My own series included early exposure to cigarette smoke in my household (my Mom said I used to often cough all night long); lots of x-rays early in life (when they gave off a lot more radiation); vaccination assaults; serious head injury/whiplash; numerous amalgam fillings and metal crowns; major chemical exposures/injuries; very bad root canal; Lyme Disease; and more.

    All of the above (and then throw in genetics) I believe culminated in my developing a multi-systemic breakdown, otherwise known as ME/CFS. My own unique combination of experiences resulted in my current makeup which leaves me especially vulnerable to chemical exposures (besides numerous pathogens). Different exposures at different times can easily deliver devastating setbacks for me, lasting from weeks to many months. Unfortunately, one of my main symptoms when experiencing these exposures is that it “sets off all kinds of misfirings” (to use your very apt words).

    As my own experiences relate to this thread: I have driven extensively through many different parts of the country (including areas that have been described here as pretty horrible) during the many years I’ve struggled with ME/CFS. Much of this traveling has been in recent years, not just long ago. During this time, I’ve never experienced (that I can recall) any kind of mold plume or similar biotoxin exposure that could even come close to resembling the extreme hits I’ve taken from various kinds of chemical and/or hydrocarbon exposures.

    Just yesterday, I was traveling across town (pop. about 20,000), and drove through a low-lying area that had a very strong smell of diesel in the air. A little later on, I happened upon another area with a weird kind of sweet smell in the air. Though I generally have more resilience to these hits than I used to (thank you methylation supps; and more), today I am reeling, even though both of these exposures were probably less than a minute each. This reeling includes serious vertigo, and that very discomfiting experience of excessive neuronal firing (or misfirings).

    So for me, traveling extensively through a minefield of chemical/hydrocarbon exposures to try to find a mold-free environment does not seem like a good strategy for me. Exploring various micro-climates in my own nearby areas does make a lot of sense however. I think this kind of initial step in pursuing more knowledge about my own unique vulnerability to mold/biotoxins would be much more beneficial than immediately setting out to do extreme mold avoidance. For some, this may not be an option, but for others like me who really don’t yet know to what degree mold is an issue, it seems quite appropriate.

    Regarding the hyper-reactivity most PWCs experience: I’ve discovered a number of things over the years to reduce my own hyper-reactivity. Incorporating methylation supplements and other ongoing gentle detoxification methods has been very significant. But several “one-time” things have also helped immensely. Amalgam, metal crown, and root canal removal have all been huge for me. One other item I would classify as huge was having a one-time alignment of my atlas (uppermost cervical vertebra) using a method called atlas profilax (AP).

    The AP alone reduced the overall hyper-reactivity in my body by as much as 50%. I believe my own cranial nerves (twelve in all) exiting the brainstem through the atlas had been severely impinged/compressed since my head injury/whiplash at age 15 (this can happen at birth as well). The AP was able to reduce much of this compression, and allow greater nerve energy to flow through the rest of my body. I believe my neurological system has been ever so slowly healing since then as well. For me, this resulted in a much reduced hyper-reactivity. My body just seemed to have more “neurological resilience” afterward.

    Based on my own unique circumstances and experiences, I would gently make a suggestion to those who may be contemplating doing the very difficult and stressful endeavor of extreme mold avoidance. If you’re uncertain about your own mold/biotoxin sensitivites/vulnerablities, and currently don’t feel a great urgency to make a quick exit from your current home, you may want to first consider doing the AP procedure. This might be especially important if you’ve had a history of accidents and/or head injury/whiplash. I believe the AP has the potential to reduce the hyper-reactivity of other pwCFS, just as it did for me. This kind of result might make any mold avoidance endeavor significantly easier to navigate.

    I would also recommend attempting to address all things related to oral health beforehand. Besides the metal removal factors I’ve mentioned above, I believe tracking down focal infections that may require cavitation surgery might also be well worth considering. Why? Because I met a woman here in my own small town who had very severe ME/CFS for several years (six I think), and was able to resolve it completely by tracking down a focal infection in her eye, and another one in her mouth. Once she had remedial cavitation surgery, she was well (almost immediately). For her, it would likely not have been a good idea to search for a perfect mold-free environment in the GSD when her solution was to be found elsewhere.

    Well, I think I’ve over extended myself a bit here. Sometimes writing has a way of calming things down for me (after my environmental hits yesterday), and this post may have been just the right therapy for me this morning. There have been many potentially consequential perspectives shared on this thread that are well worth giving a lot of careful consideration. When considering something as consequential as shifting from mold avoidance to extreme mold avoidance, I try to carefully and methodically weigh all the pros and cons before setting out on such a course. From several years of reading ME/CFS message boards, it's abundantly clear to me that what may be a really good idea for some pwCFS could all too easily prove to be disastrous for others.

    Best to All, Wayne
    Last edited: Feb 6, 2014
  10. Dreambirdie

    Dreambirdie work in progress

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    Thanks Wayne, for your very well thought out reflections on the issue of mold and other environmental toxins.

    Me too. I have never run into mold plumes or biotoxin clouds. But I have certainly been blasted too many times to count by horrible chemical exposures, while on the road.

    I agree with this as well. There are so many options in terms of local microclimates where I live, with huge variations in climate and plant life. I think it would be much wiser for a very ill person with CFS to explore their own local microclimates, rather than to take off on long arduous mold avoidance road trip.

    I have been curious about the AP since you first mentioned it and have it on my to do list... sounds intriguing.
    Already on board with taking care of my teeth. arrrggghhhh! not fun! but hopefully worth the hassle and EXPENSE.

    It's always great to read your posts Wayne. I appreciate so much your calm and balanced view on things. :hug:
  11. slayadragon

    slayadragon Senior Member

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    Thanks for an interesting few posts, Tree.

    I’m not in disagreement with anything that you’re asserting here, though since what I’m suggesting is a really complex argument I understand why people might think so.

    Maybe this would be a good time to summarize what I am suggesting.

    1. I am conveying my observation and belief that there is a particular biotoxin that is so horrific in its effects for ME/CFS sufferers that avoidance of it is more crucial than that of any other substance they are likely to encounter in normal day-to-day life (e.g. outside of a chemical spill).

    I believe this substance to be most frequently present outdoors but occasionally present indoors as well. It seems to have a particular association with sewage and certain chemicals (including firefighting chemicals).

    It is my observation that this toxin is much more present in certain locations (such as Ann Arbor, Truckee/Tahoe and Dallas) than in others. It is not necessarily an issue in every square inch of these places. In fact, Erik’s entire wellness strategy has been based on the fact that it actually is not present everywhere, and that by using a combination of avoiding the “plumes” of it that blow about and frequent decontamination, he has been able to be well even living in a particularly bad place (Truckee).

    According to Erik, this toxin was associated strongly with the Incline Village epidemic in the 1980’s. He states that he observed that substantial amounts of it appeared in the area just prior to the epidemic starting in 1985 and that the people suffering the most severe symptoms that caused Dan Peterson to call the CDC were being exposed to particularly large amounts of it. He thus suggests that it is worthy of consideration as an integral aspect of the severe form of this disease (i.e. the one described in “Osler’s Web”).

    I am suggesting that insofar as people are experiencing the sorts of symptoms associated with this substance and a severity of illness that causes their life to be horribly painful to the point that they do not feel that it is worth living, it may be worth a test to see if moving to another place that others have found to be good (along with preferably putting aside contaminated belongings) provides some relief.

    I am suggesting that this particular substance is present in smaller amounts in many or most metropolitan areas, and that what is considered to be the effects of “pollution” may in some but not all cases actually be due to this substance.

    I’ve listed on this thread and elsewhere a number of symptoms that seem specifically associated with this particular toxin. I am suggesting that these symptoms are being triggered and/or caused by this toxin in ME/CFS sufferers, who for some unclear reason (such as the presence of specific pathogens, previous toxic exposure and/or certain genetics) are particularly susceptible to it, and that relief from these symptoms might be obtained by getting clear of it.

    I am offering the hypothesis that in even small quantities, this substance has devastating effects on people who suffer from ME/CFS (Canadian Criteria). The extent to which it is affecting people who do not have this illness is in my mind unclear.

    I’m stating that this substance can be present in substantial quantities even in locations (like Truckee/Tahoe) that are generally good in terms of other sorts of pollution. I’m suggesting that because this substance is so devastating to people with this disease, they may want to consider a trial away from it even if their only option is a place that is problematic in other ways (such as outdoor pollution, indoor toxic mold or indoor chemicals).

    The existence of this substance is not addressed in any literature. The reason that I am discussing it is specifically because I would like to have it identified and studied.

    There is no reason that anyone should believe me that this substance exists, since I have no studies to support my contention. It is wholly reasonable for people to dismiss its existence.

    Science starts with careful observation. There are many things in the world that have not yet been shown to exist in the scientific literature. If everything that existed already were in the literature, there would be no new papers being published.

    Again, I am bringing it up here in the hope that it will be studied.


    2. I’m suggesting that insofar as ME/CFS sufferers are to achieve anything close to wellness, they cannot be getting substantial exposure to specific biotoxins.

    The biotoxins that I am positing have particular effects in this illness are Stachybotrys and the one described above. The extent to which others are particular factors is unclear.

    I am suggesting that people with ME/CFS cannot get better in an environment that is particularly bad in terms of these biotoxins. For some individuals, small amounts of exposure to them may be tolerable. For other individuals, exposure to even tiny amounts of them (such as the amount that clings to the hair after a 30-second visit to a bad building or a brief drive through a bad area) may be sufficient to keep them wholly sick.

    Stachybotrys is primarily found indoors. I thus certainly agree with the contention that ME/CFS sufferers need to look at both their indoor and their outdoor environment if they hope to achieve wellness.

    3. I’m relaying the fact that merely by avoidance of certain biotoxins and doing little or nothing else, a number of people have been able to get to fairly close to full wellness from carefully documented ME/CFS.

    In particular, with sufficient avoidance, they have been able to eliminate symptoms such as PEM (to the point where, in Erik’s case, he made it to the top of Mt. Whitney for 10 years straight).

    In most cases, not all symptoms are alleviated even with the most scrupulous avoidance. In particular, cognitive symptoms tend to remain.

    My point in bringing this up is not to suggest that this is in any way a cure for this illness. I am suggesting that because it has brought a number of people to the level that various ME/CFS doctors call a “functional cure” -- and that is equivalent to or greater than what those same doctors have presented as their biggest success stories -- that these cases are worthy of further research.

    I also am suggesting that a major factor that distinguishes failures vs. successes with regard to other ME/CFS treatments may be the extent to which people are being exposed to various biotoxins. My speculation is that this may be a factor in terms of who benefits from antiretrovirals as well as from all other treatments that occasionally but not consistently have positive effects on people with this disease. I would like to see studies in which patients are separated into groups according to how much biotoxin exposure they are getting, to see if that’s indeed the case.

    I’ve stated that I am aware of a number of people who have recovered a substantial amount of their health about 5-7 years after moving out of a particularly problematic residence into what seems to be a good one. I am suggesting that the delay in the recovery occurs because it takes contaminated items 5+ years to die down, and that in some cases contamination of belongings is sufficient to keep people from making any substantial progress toward wellness.

    4. I’m suggesting that effective avoidance of Stachybotrys and the biotoxin described above is necessary but not necessarily sufficient if ME/CFS sufferers are to achieve substantial wellness.

    Exposures to other substances also may have the potential of keeping some or all ME/CFS sufferers from getting well.

    However, if people look at the literature (some of which I have posted on this board), it becomes clear that a wide variety of the core problems with this disease are entirely consistent with the effects that have been shown to occur as a result of Stachybotrys exposure. For instance, to a much greater extent than most other toxins, Stachy creates inflammation, oxidative stress, and perforations in the intestines (“leaky gut”) and in the blood-brain barrier (possibly associated with MCS). Regardless of how people use the word “cause,” exposure to substances that create these effects seem to be the last thing we need.

    However, it may be that at least for some people with ME/CFS, avoiding exposures to certain other substances also may be essential. This creates an extra level of difficulty to the endeavor of trying to improve or get well, unfortunately.

    Even if biotoxins are avoided at an extreme level, people may not get well. Other issues, such as pathogens or other toxins, may prevent that.

    My suggestion here is only that insofar as people are living in a moldy place or getting exposure to the substance that I found in Lake Tahoe to anything more than a mild extent, it will be extremely difficult for them to make any progress at all.

    5. I’m suggesting that at least for some people, a large toxic mold exposure can be one contributing factor to why they come down with ME/CFS.

    Insofar as XMRV is a core cause of this disease, that makes complete sense. Judy Mikovits has stated that some factors that can cause XMRV to (re-)activate are inflammation, cortisol, androgens and estrogens. Toxic mold creates a great deal of inflammation and prompts the body to produce a great deal of cortisol. Thus, it’s conceivable that someone who gets a lot of toxic mold exposure might start having problems with XMRV even though it would have remained unproblematic without that exposure.

    
This does not mean that toxic mold is the _only_ thing that might cause XMRV to go active. Mercury is inflammatory, and so exposures to that might cause the virus to (re-)activate. Paul Cheney recently named the following as factors that might cause an activation: Lyme, flu, vaccines and toxic mold. Other things that prompt cortisol, inflammation, estrogens or androgens also may serve to activate the virus.

    I myself had a wide variety of these factors during the 18 months prior to getting ME/CFS: Hepatitis B vaccine, head injury, trial of inflammation-producing antidepressants, a variety of stressful events, pregnancy/miscarriage, and flu. At some point (I’m not sure if was before or after I got sick) I got Lyme as well. Toxic mold was just one of many factors that appears to have contributed to my getting sick.

    Whether the mold exposure would have been enough to tip me into ME/CFS on its own -- and whether I would have avoided coming down with the disease had I not been exposed -- is unclear.

    What does seem to me to be clear is that toxic mold is something that people who do not wish to get ME/CFS might consider avoiding, and that people who already have ME/CFS might especially want to avoid.


    6. I’m expressing my hope that insofar as more is known about the connection between toxic mold and ME/CFS, effective treatments that do not require extreme avoidance will be more likely to be developed.

    I am as eager as anyone for there to be options to extreme avoidance. I have tried very hard to fix my own core health so that extreme avoidance stops being necessary for me to be well.

    I’m not suggesting that anyone pursue my path to getting well. I see it as just a trip down the rabbit hole, with a goal of learning information that might be helpful in terms of our understanding of this disease.

    I’ve repeatedly suggested to Joey that he might consider “moderate avoidance” (moving to a good house in a place without “?” and putting aside his current stuff) rather than doing extreme avoidance. He seems to be set on trying extreme avoidance. That doesn’t mean that anyone else should follow his lead.


    7. Because people keep asking me, I periodically share thoughts about what locations I think may be good vs. bad.

    I continue to suggest that all of these are tentative, even when they are based on my personal experiences. I try to make it clear that locations change on a daily and seasonal basis, and that many get worse over time. (Occasionally I’ve heard of some getting better, though unfortunately that seems to be rare.)

    Perhaps I should stop making any generalizations about regions. Insofar as I’ve not been to a particular place (meaning within a very small radius), I cannot predict for sure whether it will be good or bad. “It is where it is.”

    However, when I hear enough stories from people with extremely severe Incline Village style ME/CFS living in a particular region (e.g. the Bay Area) and/or when someone I trust (e.g. Erik) tells me that s/he has a hard time even driving through that place because the plumes of “?” are so bad there, I develop suspicions that it indeed might be problematic. Because I believe it’s so important for people who are in great agony to consider whether they are being exposed to this substance, I bring up those suspicions as food for thought.

    I believe that different people may react differently to the same environment. However, my experience is that when I have been with other people with ME/CFS, the environments that are very problematic for me have the same effects on them. This does not prove that my own experiences are wholly generalizable, but it does suggest that they are something that might be considered as a possibly relevant factor for others.

    Best, Lisa
  12. jenbooks

    jenbooks Guest

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    I generally do not believe there's an outdoor ick (?) either. I'm not sure what was in Dallas. I know it was the most polluted, toxic place I ever drove through, and I think it has a lot of bad mold. I've heard that, too (that people's homes there are really moldy). I'm not sure if Dallas has the kind of bad stucco that Houston had/has--most of the mold lawsuits originated in Houston. Whatever it is, Dallas is a bad city. Dallas/Ft Worth also have tons of fracking going on, which pollutes the air and water. And I would not live there, and I would not see a practitioner there unless it were life or death.

    There are other cities that are merely polluted (merely?). Atlanta was really awful at times. I could barely breathe from the smog. I seemed to be EMF sensitive there. Austin was polluted, not as badly as Atlanta, but I could smell and taste it. San Antonio was sadly ruined by pollution as it's a kind of neat city.

    My experience of indoor places is also different. But for me, as probably for Dreambirdie, the major presenting symptom is MCS, and the ME/CFS are ripples outward from that. Right now I'm in a supposed mcs-safe-mold-free home, built for that purpose. And I'm feeling very unwell. I'm having stinging pain, stiff joints, general muscle aches, irritability, and fatigued. By 6 pm I'm ready to retreat and lie down. I don't feel like taking walks. I cleaned today, and did stuff, but I'm irritable and feeling crappy. I am pretty sure it is the extensive interior cedar trim which was not well sealed, and while the house was shut up for months, really offgassed and smelled very strong when we came in.

    Now how many people get those symptoms from cedar? "Healthy" people build whole cabins out of it and revel in the odor. Well, the plicatic acid in cedar is causing me major inflammation and fatigue and it all feels very unpleasant.

    How would I compare this to mold? It's hard to compare. All I can say is, I can't get well while reacting to this cedar. And I can't tell if there is anything else I"m reacting to until I get all this cedar trim sealed which is a huge job. And it has to be with something nontoxic.

    And *this* is a safe house! Really, compared to most, it is. Tile floors, nontoxic paint, nontoxic insulation, metal roof, lots of windows and air flow.

    And this is a relatively good area. It's not as far out as the hill country Tree & I were talking about, but it's unpolluted, you can see the stars at night etc.

    My system is highly (insanely?) reactive to all kinds of stuff. In a hotel room recently I couldn't sleep at ALL, not one minute, by the fifth night, because the toxicity was so overwhelming to my body. I only stayed inside because it was very cold out and getting into the truck would have meant freezing my butt off all night.

    So, we really are all different. And the reality is, we have to live with the uncertainty. It's really unmooring. Trying to make a coherent theory out of it is a natural response, but coherence is not the mark of this kind of condition. Unreliability is. You may tolerate an exposure today, and not tolerate it next month or year. The load on your body is constantly shifting, and so are your own responses (and if you're a woman, hormonal shifts may come into play, as to your toxic reactions).

    I do totally 100% agree that toxic mold is a baddie for anybody. By that, I mean stachy primarily, but also aspergillus and others that give off toxins. Water damaged buildings are bad. But as I keep stating, I think most homes have mold problems, because construction is so shoddy and so stupid.

    And the thing about radical mold avoidance is--how do you keep doing it (unless you're Erik). Lisa, it sounds like you were able to go back "home" (Chicago) for a few months, while still living an adapted life (sleeping in an office)--and now are on the road again for more wilderness camping. I was just reading an interesting MCS blog where she talked about how sleeping outside--whether a NYC balcony, or friends' yards in NM--was infinitely better than sleeping inside, which inevitably made her sick. And indeed, I know someone who set up a gazebo in her back yard in California, offgassed it for a year, and then put her bed in there. That's where she sleeps.

    So being primarily ME/CFS and less MCS, is a very different journey, than primarily MCS, with ME/CFS as reactions to too high a chemical or mold load.

    I would like to understand why my body is so reactive, but I don't really. One theory is pathogens upregulating the inflammatory response, whether viral or bacterial or fungal. Who knows.

    I also agree finding a microclimate in your area, especially if you have a support system, is far wiser. I looked for 2 years for a suitable dwelling in Long Island or Westchester (Nyack), by the water, and found nothing, but that was probably just the luck of the draw. However, I've found that warmer climates really suit me better. I really do better if I can sit out in the sun. It's not good for me to be closed up in a relatively toxic "inside" environment for six months a year. And the warmth of the southern sun is good for me, too. And everybody has been far friendlier in all the places we've been, than anybody ever was in NY. So, in general, I'm not sorry I pushed off, but yeah, leaving your home area is far harder than you might anticipate, and if there's any way you can stay where you are, do it.
  13. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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    All this talk of travel and air quality made me think, does the EPA monitor biotoxins in the air?
  14. soulfeast

    soulfeast Senior Member

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    Lisa: Soulfeast, I am continuing to try to understand what is going on with your health. Based on everything you’ve said on this board and elsewhere, it seems to me likely that you are getting substantial exposures to the “?”. Because your level of illness is severe, you might want to consider experimenting with living in other places to see if you can obtain improvements to a level of illness that is more tolerable.

    Me: Everyone makes so much sense I am confused. Add to that the crazy symptoms and the potential factors that complicate the simple cause-effect relationship, I honestly cannot say that ? is a factor for me.

    (1) No one in my family is experiencing it.. though I guess one can say they are masked since my parents live in pain.

    (2) My parents have degenerative disks and are on so many meds that not only does it scare me for them, I wonder how much all that is muddying the pictrure.

    (3) One of my parents if not both have a dreaded gene, one if not both a celiac gene, one if not both have XMRV. Both were exposed in their home to super high spore counts, so untreated biotoxin illness is most likely a factor. I have one "dreaded" and one low msh gene. So I cant say ? is causing this.

    (4) My sister did heal after moving out of the damp basement. She still lives here and is functioning with narcolepsy and dyautonomia which is is managing. She was so sick we thought she was dying ... bedridden for years with the mnysterious abiility to get out of bed and run errands for hours from time to time. She was sick before the basement, but it may have done her in.

    (5) I am not sure I am not detoxing, reacting to new house chems, or reacting to fungal infections, esp in regard to sinus and brain inflammation.

    (6) I had ? symptoms more severe (sans the persistant ANS inbalance Ive had for close to two weeks now) in my stachy house.. directly form the dust but who knows from what else. This was near DC.

    I am not rullig out ?. I am running a urine toxic elements test tomorrow and we shall see if metal detox is involved. I am on the full methyaltion protocol including Dr yasko's supps and KPU though down to 30 mg of zinc (fingernails no longer have white marks) and less and less p5p.. never more than 50mg, does depending on whether I am dreaming.

    I can see what people are saying about moving. It was so very hard and I am not sure the ANS upset is not a cause from teh stress finally hitting the fan.. typical delayed ANS reaction in dysautonomia or from the upregulated response seemingly to either mold or chemical hits which have been ridulous.. I do feel I have unmasked despite moving to a new house.

    I dont know.. and if my ANS does not calm down soon I dont know what I am going to do because any thought of moving again makes it worse. It seems I may need to lie low, take a deep breath and breath in the outside air more despite the fact it is close to terrifying me the ? is in it.. In other words, when your body is this whacked out, any move is terrifying, any decision is terrifying.. what to do?

    If ? is a factor, I hope to make it through winter without dying. Thats about where i am. Learning about this has been a doubel edged sword for me. I had to get out of the house I was in and possibly the state of VA.. if algae covered ponds is indicitative of any ? issue.

    I would like to know when any one who practiced any form of mold avoidance... left your home to the GFD experienced detox and what it was like. Does it, can it screw up your ANS. Anyone who has not left a mold home.. and is=has detoxed.. did it screw up your ANS? BP up, BP down, pulse up, the pulse really really up? adrenal dumps. ugh. worry def makes it worse!

    ADDITION :
    (7) I worked up to full dose CSM too fast. What if I had a big biotoxin dump and then what about the stain on the ANS, adrenals to replace all that bile? In such an abrupt fashion esp with one with dysautonomia and a family history of severe dysautoniomia

    (8) I have lyme and it may be flaring/

    (9) ANS went whaky afer-during kids and I got respiratory illness.

    When I first moved here, I felt better except for extreme burning in my legs which went away with a chiro visit.. then about three weeks in.. started feeling worse.. added in csm at some point, felt better, pain better,.. the the big crash.
  15. slayadragon

    slayadragon Senior Member

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    I think that's a really good idea.

    It's actually what Joey did when he went back to his parents' house in southern California. He didn't feel good in the house, which wasn't surprising since the ERMI test and the mold dog indicated problems and there also were chemical issues. Setting up a tent and then finding that he still felt much worse than he had in either Santa Cruz or Columbus -- and that coffee enemas (which address toxicity) made a difference in his symptoms -- made it more clear to him that a core problem there is something outside.

    Nothing you can do about the outside air except hope for a change (e.g. in seasons) or move.

    Knowing what substances are bothering us is the first step toward avoiding them. I do experiments like that routinely.

    Sleeping in a tent in the middle of winter is not a lot of fun, but the possibility of feeling better and of gaining useful info may make it worthwhile. I'm looking forward to hearing what happens if you decide to do it, Soulfest.

    Best, Lisa
  16. slayadragon

    slayadragon Senior Member

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    Erik's always been in full agreement about this microclimate concept. His idea is to go to some area that's super-clear to get unmasked, so that you can go back to your local area to find that microclimate.

    I had a hard time doing that in the Midwest. Weirdly, the best microclimate I could find was right outside the house where I got sick (the remediated house itself was still problematic). There are real clouds in Chicago (at least some of the time), though whether that's related I don't know.

    As I've gotten healthier the options have expanded. There's still a limit to how much I can tolerate without spiraling down, but it's a lot higher than it used to be and I also recuperate from exposures faster.

    Jen, it would be interesting to hear your thoughts about Rea's new book. It's really expensive and rough going, but his concepts about the Ground Regulation System make a lot of sense to me. I encouraged Keith Berndtson to get a copy, and he found it to be really interesting and pretty groundbreaking as well. Have you read any comments about it from anyone in the MCS world?

    http://www.amazon.com/Reversibility...3426/ref=sr_1_2?ie=UTF8&qid=1292169116&sr=8-2

    Best, Lisa
  17. Dreambirdie

    Dreambirdie work in progress

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    Dangerous and Reckless Advice.

    My biggest concern and complaint about Lisa's radical mold avoidance agenda is the often dangerous and reckless advice that she gives people who are seriously ill. What I'm referring to exactly is advice like this:

    I find this kind of overreaction to be rather alarming and definitely a bit unconscionable as far as "advice" goes. To recommend that someone who is very ill just "get the hell out!" of wherever they are living, without taking time to investigate ALL THE VARIOUS FACTORS THAT COULD BE MAKING THEM ILL, is incredibly careless, and way beyond reason.

    My main concern has been that someone who is ill enough and desperate enough might actually follow through with "getting the hell out!" as recommended by Lisa, and end up even more ill as a result of such impulsive action. So I am relieved to see some people on this thread expressing their well thought out skepticism regarding some of Lisa's more irrational conclusions, especially her belief in the invisible PLUMES of outdoor ick, also known as "?"

    Thank you JB. Me neither. And thanks also to Wayne and Tree for your input on this thread. It provides a much needed balance to some of Lisa's extreme beliefs.
  18. slayadragon

    slayadragon Senior Member

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    Dreambirdie, Wayne asked me if there was something that I thought was vital for me to have done prior to pursuing mold avoidance.

    I stated that I thought that leaving my moldy home as soon as I found out that it was a problem rather than waiting until I had tried something else had been the right thing to do.

    If people with ME/CFS are living in moldy homes, they should get out. Dr. Paul Cheney stated his belief in this a few months ago in an e-mail to his patient base, and I am in agreement with that.

    Lots of people think that Dr. Cheney is too radical on a variety of topics. On this one, I believe he is correct.

    Jen, you and I do not seem to be in disagreement that the outside air in Dallas was extremely bad.....meaning to the point that it would prevent either of us from living there. Even just driving through was more exposure than either of us was able to handle.

    We only seem to disagree in terms of our hypotheses about where the bad stuff (that we both believe to be some sort of biotoxin) is coming from. You've suggested that maybe it emanates from bad buildings. I've suggested that perhaps it emanates from a problem in the sewers.

    The identity of and sourcepoint(s) of this particular substance is interesting to debate, from a speculative point of view. But that debate has repeatedly been taken out of context as support for the idea that people should not be concerned with exposures to biotoxins that are present in the air outside their homes rather than growing in their homes.

    I don't think that's what you were suggesting. If it is what you're suggesting though, please let us know.

    Best, Lisa
  19. jenbooks

    jenbooks Guest

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    I'd like to read the book but that's too expensive. Unfortunately I personally know four people who went to Rae's clinic, two for a year or two, and got no better. And i know one on whom he tried to perform an endoscopy without anesthesia because he had the idea it would harm her. So I've heard so many bad things

    speaking of outside air I think I may be having an atypical form of cedar fever. The cedar junipers here are highly allergenic and bloom from Dec to Jan or as late as March. Cedar fever is considered the scourge of hill country. I was feeling better at the mall and started getting stinging sensations back here on the property. This neighborhood is rural, with a 40 acre hermitage down the road, cedar junipers are everywhere. It's strange I'm not sneezing much. Maybe I can do some allergy treatments. Sleeping in a tent might not help!

    Re: Dallas, I think it's a combo of pollution, bad buildings, and gas drilling. But who knows. I've neve run across a place like Dallas. But I do agree with DB basically. Most folks can't get out anyway. Family ties, spouses working, their own work, trusted doctors, the familiarity of home. Moving requires a whole new set of doctors both for the illness and regular care, new dentists, new friends, maybe new furniture and clothing and finding housing will be tough. Forebearance moved seven times already. The loss of all those supports built up over years is staggering. You don't know what you'll encounter in the new environment. Generally you have to be in moderately good health already to get out esp to another part of the country. And you may get sick there. One young man I know got the hell out to AZ, got valley fever, got horribly ill and had to move the hell back in with unsympathetic family in mass. where there is indoor mold and lots of toxins.
  20. Forebearance

    Forebearance Senior Member

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    I feel for you, jenbooks. A house with cedar trim would bother me, too. Probably as much.

    My experience has been that my exposure to mold toxin determines how sensitive I am to chemicals. The more I'm mold-poisoned, the more my MCS acts up. But then of course, when I first get clear or when I take anything that kills viruses, my sensitivity to chemicals goes way up for a while.

    It feels like chemicals are obvious. They hit you over the head with discomfort. Mold toxins are subtle. Until I was unmasked, I couldn't feel them. I was just sicker.

    Now I can feel the mold toxins. Around Dec. 1, the outside air in Council Bluffs, Iowa started to get some "?" in it. It was at the same time as powerful winds were blowing in from the southwest (as far southwest as NM). The bad air seemed to settle in the Missouri River valley. It was strange to run into the "?" in the outdoor air in these parts. I wonder if this happens to Council Bluffs every winter.

    It took me a while to figure out what was going on. Finally I asked someone with a parent with fibromyalgia how her mom was doing, and she said "Terrible -- she wants to die". That clued me in. Then I noticed that driving into the valley the poisoning symptoms kicked in, and after driving up out of the valley the symptoms faded.

    Edited to add:
    Oh jenbooks, I moved seven times around the same urban area. I didn't lose any of my support systems when I did those moves. It was expensive and a lot of work, though.

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