1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
Can You Come for a Visit? My ME/CFS Says No
My daughter and son-in-law just had a baby last week. We are thrilled. But we won't be able to see the baby or hold her any time soon. We won't be able to take over little gifts or help out with housework or babysitting.
Discuss the article on the Forums.

Biotoxin/Mold Illness

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

  1. jenbooks

    jenbooks Guest

    Messages:
    1,220
    Likes:
    112
    Ok, I hear you. After a bad night of three hours sleep from bladder burning. PMS and fabric softener.

    Anyway I too had to get out or die. I didn't just have one leak. I had eleven in two years. Two were actual floods. Bursting pipes. All due to gut renovation on a 1931 prewar to turn most of it to luxury condo and make a killing -- and they did in both senses of the word. They made obscene money and they killed some people. My place was completely destroyed for my safety. And it was a two bedroom rent regulated in the UWS across from the park and river in a doorman bldg -- an apartment a NY writer would dream of. And never ever ever ever leave.

    And I'm nowhere a year later except a lot wiser about my condition and reactivities.

    I'm not on board with agent x ie Cyanobacteria as an outdoor biotoxin poisoning whole areas. I've never experienced anything remotely like that. And I've been to ground zero, the much reviled toxic heap known as Texas, and found a number of areas that were really healthy. And that state is so large I didn't see much of it -- such as big bend or Amarillo.

    I do think buildings are bad, get such mold. Buildings are a disaster. The materials and construction are ludicrous. And a very new house is extremely toxic. Perhaps it can be a transition for you. But a brand new house is too toxic.

    I remember your sisters story. I've recently talked to several people who were mold and mcs, went to Rae clinic, got rid of homes and all belongings, remained sick, slept in cars, got EMF who were totally healed by God and/or quantum EMF techniques. How the HOLA (to use dreambirdies word) that works I don't know. But for some it works.
  2. jenbooks

    jenbooks Guest

    Messages:
    1,220
    Likes:
    112
    PS I do think Dallas Ft Worth is awful. Pollution, stachy buildings to the point the whole city seems toxic, lots of fracking. It's a cesspool even driving thru and does have biotoxins I believe stachy.

    And I do think being an hour outside of a big city is important. Pollution in Atlanta, San Antonio, Austin and I'm sure LA, Miami, Houston, Chicago etcetera etc is just really bad. You can smell and taste it. The horizon is a brown haze.
  3. slayadragon

    slayadragon Senior Member

    Messages:
    1,087
    Likes:
    369
    twitpic.com/photos/SlayaDragon
    Jen, just out of curiosity, how do you know that the offending agent in your condo was Stachy?

    Thanks, Lisa
  4. Dreambirdie

    Dreambirdie work in progress

    Messages:
    5,003
    Likes:
    3,090
    N. California
    Hi JB--

    Sorry you had a bad night. Me too. I used a different laundry soap than I am used to on all my bedding yesterday, and woke up totally congested and brain weary as a result.

    Like you, I don't buy the Cyanobacteria biotoxin poisoning entire towns and entire states. Where is the evidence for that? Has it actually been sampled and measured? If not, then isn't that a rather drastic assessment to come up with, based at least partly on the fact that people eat a lot of sugar and junk food in those areas? and that sugar consumption has something to do with aiding the mitochondria during mold/biotoxin over-exposure?

    Also the conclusion about "MCS being much worse in CA than in the rest of the US" ... is not really a statistically proven fact. Most of the US is rather ultra conservative (hello Sarah Palin lovers!), and not exactly oriented towards the kind of alternative health care that caters to those with MCS... which one would be MUCH more likely to find in CA. Based on that, wouldn't it be more reasonable to assume (if we're going to make any assumptions at all) that many people with MCS actually COME HERE to find the help they need and AREN'T GETTING in other parts of the country?

    In addition, I also have a problem with Lisa's long list of symptoms, which she attributes exclusively to mold and biotoxin poisoning. I have seen other long (and similarly very all inclusive) symptom lists like hers for conditions attributed to: hypo-thyroidism, estrogen dominance, candida overgrowth, parasites, MCS, and B12 deficiency (which I will discuss momentarily). I have no doubt that Lisa herself had these symptoms and found relief from them through her mold avoidance agenda. But... whether it is logically sound to draw from one's own limited personal experience a scientific-sort of theory that concludes (or implies to conclude) that this is the ROOT CAUSE of certain people's CFS.... I really have to express my doubts on that. If CFS patients are IN FACT a heterogenous group, then wouldn't it be wiser to consider that mold could be ONE of the causes of such symptoms, ONE of the issues that would be helpful to address, and not THE big most absolute ONE?

    Some of Lisa's reasoning reminds me so much of Fredddd's and his B12 agenda. Like Lisa, he had remarkable results with his particular B12 regimen. And also like Lisa, he tends to use his analytically oriented thinking to prove that his subjective results are the ONE right thing for everyone.... which they clearly haven't been. I suppose that on one level that's just human nature. When we reap huge benefits from something that helps us recover our health like nothing else before it ever has, then it makes sense that we would want to share it and pass it on. But then, on the other, when one's own personal agenda becomes a rigid theory or even a kind of dogma, then I think it's really wise to shine a light on that and question all aspects of it that don't ring true.
  5. soulfeast

    soulfeast Senior Member

    Messages:
    401
    Likes:
    40
    Virginia, US
    Lisa are you associating the ? with drainfields? Curious because we did not have ours cleaned out when we should have.

    We also had mold growing in the toilet bowl, which would not be coming from the sewer. The water was not chlorinated.. well water.. so maybe an explanation.

    We def had stachy and from a dust analysis ERMI I can tell you what molds were found.

    What about the mold stew that Shoemaker and Dr Thrasher talk about.

    Shoemaker does emphasize a glutamate/gaba imbalance and my go into some detail in his pdfs. So I am getting excess glutamates from any biotoxin exposure. So...

    That might explain why some people in the same house or area do not have the sensory storm while others do?? If its not caused by an ? substance rather a shift in weather or even if caused by an ? substance.

    What if barometric pressure does something specifically to glutamates that are already in the system?

    It makes sense to focus on controlling the sensory storm (from glutamates.. so a glutamate storm?) with supps when a flare happens.. I used klonapin in my old house and it worked within 30 minutes.. that and drinking lots of water.. possibly helped.


    We did recently have the sewere back up in this new house, whether change about the same time.. so hard to tell if picking causes.. what about the toxins we poop out.. they are in the sewer system. Maybe they react with each other.. ??


    The ? in Lake Tahoe area, Trukee. this caused the CFS or the stachy did since the stachy is associated with teh mito damage, etc? and the ? bascially with the sensory storm which does involve the heart.. Yasko commented to me about this with glutamates.. they are associated with certain heart issues.

    My glutamates are sky high as per last test.
  6. soulfeast

    soulfeast Senior Member

    Messages:
    401
    Likes:
    40
    Virginia, US
    I know of others as well. So yeah it does happen. As confounding as it is and frustrating at times, it gives me hope that sometimes the there may be more to this than focusing on the problem intellecutally. At the same time obviously waiting around for a miracle healing is a bit impractical to say the least.. makes me at least keep in mind some sort of balance, which is diff for me to do.

    Im betting she had sensory storms if they cause dysautonomia and ANS to go absolutley nuts to the point of dangerous.

  7. soulfeast

    soulfeast Senior Member

    Messages:
    401
    Likes:
    40
    Virginia, US
    Regarding mold as THE problem.. I dont think I would be sick if it were not for the mold exposure unless xmrv can cause the shoemaker markers.. I read on the Deckoff update that she is monitoring c4a, c3and TGF-b1.. is this because of xmrv or mold?

    My husband has lyme and a 'dreaded' shoemaker gene and is fine. He was not in our house as often as I was and went outside often. His methylation markers are cleaner than mine going by my daughters results and did not have the heavy pestcide exposure I had as a child, nor dare I say, the trauma I had as a child and young adult.

    So the mold and possibly the ? were in his picture as well.. ?? There are other factors.. Im not sure Lisa is saying there are not though.
  8. soulfeast

    soulfeast Senior Member

    Messages:
    401
    Likes:
    40
    Virginia, US
    I am trying to keep an open mind either way. I can only know what I know. I had stachy and other toxic molds in my house.. there is also the mold or wet building damage stew that Dr Thrasher refers to and Shoemaker made a point to emphasize in his latest PDF.

    My biotoxin markers indicate biotoxin illness.. are these exclusive to biotoxin exposure?

    I got sicker as the mold grew.. I also may have lyme. I did not have a viral onset to CFS.

    I have the "dreaded gene" but so does my husband who also has lyme and is not sick.

    I do have these sensory storms.

    I was reacting horribly directly to the dust in my house with the sensory storm like symptoms.

    I have had more reactions since I moved to new house (chems)

    I am reacting more.. but to what> its not clear.

    Unless you see the mold or ? and can analyze it.. you dont know for sure.. you have to assume, so this should be worded and taken as it is.. speculation and sometimes direct evidence based correlation, right?



  9. dannybex

    dannybex Senior Member

    Messages:
    2,170
    Likes:
    514
    Seattle
    Hello all,

    Been wanting to comment for days, but have been too sick, so just want to ask this a couple quick questions of Lisa and/or anyone who has the info:

    1. Did anyone else from the Incline Village Outbreak try the mold avoidance like Erik did? The flip of that question is, has anyone else from Incline Village recovered anywhere from 70-90%?

    2. Does anyone have an estimate of how many people have followed a strict mold avoidance protocol similar to Erik's?

    I'm not in any way suggesting that mold -- at least the 'bad' mold(?) -- is not a problem and shouldn't be considered as a suspect -- just wondering more about statistics here.

    Thanks in advance,

    Dan

    zzzzzzzz......klunk.
  10. soulfeast

    soulfeast Senior Member

    Messages:
    401
    Likes:
    40
    Virginia, US
    at times, I find this subject extremely frustating though I am doing my best to practice mold avoidance..

    How do you know you are reacting to mold or ? and that ? is a mold or biotoxin?

    You can certainly measure symptoms to a location or weather changes, winds, etc, but what is in that? You cant know.

    You can see mold and thats a clue. You can test the mold for what kind.

    If you have a group in one location, a wind comes through, barometric pressure drops.. or a group going through a particular city or area of one.. same symptoms flare.. thats a sign. but of what? Something triggered.. you can probably safely assume environmental but where do you go from that to a biotoxin unless there are certain precise measures you are using?

    Scientifically.. you have to make a clear assumpton or hypothesis and set your measures of effect...

    Shoemaker uses measures that can be observed in the blood.. the biomarkers. He sees them consistantly.

    How would you lay this out scienfically.. some measures? This will occur when this happens.. ??
  11. floydguy

    floydguy Senior Member

    Messages:
    650
    Likes:
    238
    Mold Exposure

    One thing that Nancy Klimas had me to do which was quite revealing was to monitor my heart rate. I started doing way more than she wanted but it did show me how sensitive my body is. I couldn't always figure out everything that was causing the heart rate to go up but I was shocked to see what a difference caffeine had. I think Lisa has used this method in the past as a possible indicator.

    I agree with Joey in the difference between mold and chemicals. My experience with chemicals is that I will literally pass out when exposed (Napthalene for example). Mold on the other hand is often much more subtle than a chemical exposure. It's funny smells don't bother me and I dont get headaches, coughs or a lot of the other typical things with either mold or chemical exposure. For me it does seem to be all about a massive inflammatory response.
  12. slayadragon

    slayadragon Senior Member

    Messages:
    1,087
    Likes:
    369
    twitpic.com/photos/SlayaDragon
  13. Wayne

    Wayne Senior Member

    Messages:
    2,192
    Likes:
    1,266
    Ashland, Oregon
    An MCS Recovery Story

    Hi Jenbooks, Hi All,

    I've been considering whether to share a little story here, but have not been sure whether it was appropriate, and/or whether it would be accepted in the right spirit. So I'll just mention, it's nothing more than a story, not necessarily part of my own belief system.

    OK, I belong to a spiritual path called Eckankar. The leader of Eckankar, Harold Klemp, had some very difficult health issues a number of years ago, many of them resembling MCS and/or CFS. At one point he was researching buying some used products designed to protect a person from various kinds of toxicity. As he was finishing up talking to the woman on the phone who was selling the products, he decided to ask her why she was now selling them.

    She sort of hesitated, and replied that nobody had asked her that before. But she said she had found the conversation with him to be a very comfortable one, and so decided to give him an honest answer. She told him her MCS went away shortly after she decided to "forgive" all the chemical companies and toxic polluters for all the pollution she felt they were responsible for.

    I thought it was an interesting story. For some reason, Harold thought it was worthwhile to share with an audience of several thousand people. FWIW, Harold often makes comments on various aspects of health, generally advising and espousing doing many of the practical things most of do to try to better our own health situations. I think he mentioned this story as just one more thing to consider.

    Best, Wayne
  14. slayadragon

    slayadragon Senior Member

    Messages:
    1,087
    Likes:
    369
    twitpic.com/photos/SlayaDragon
    Let me point out a couple of facts about Floyd's case that he previously has pointed out publicly.

    * He does not have any of the genes that Ritchie Shoemaker asserts are associated with mold illness. (He has two "low MSH" genes.)
    * He does not experience substantial PEM, and his illness is (by ME/CFS standards) moderate. Two of his main complaints are cognitive issues and fascial ones.
    * He pursued what by our standards would be considered moderate avoidance (moving out of a moldy residence, getting rid of every single item of his contaminated stuff and avoiding spending time in overtly moldy buildings). I'm of the understanding that he benefited from these activities. Further avoidance of the type that I pursued when my reactivity was higher did not seem to bring him to further wellness.

    I spent a substantial amount of time in person with him and have discussed his case further since the time we spent together. It's been quite enlightening to consider what might be going on with him.

    I think it's possible that his genotype may give him some protection against all sorts of biotoxins (per Shoemaker's hypothesis that people without susceptible genotypes can eliminate biotoxins through their immune systems). It's interesting that the substance that he mentions (napthalene) is one of the few chemicals I've found that is especially good at creating oxidative stress. This suggests to me that his reactivity to inflammatory substances (rather than to chemicals in general) is extreme, and that if he had a "worse" genotype he might be an extreme reactor to biotoxins as well. All of this is speculation though.

    Cognitive and fascial issues did not resolve for me as a result of extreme avoidance, and so I'm not surprised that they did not resolve for Floyd as a result of any level of avoidance. Antivirals seemed necessary for me to get to the point where my cognition was functioning (at least on occasion) at pre-illness level. Neural therapy and probiotics have mostly addressed the fascial issues. Hopefully Floyd will get relief for those symptoms as well, perhaps through similar ways.

    (Perhaps I should add that Floyd repeatedly and roundly beat me at backgammon last winter, when I was just starting antivirals.)

    Heartbeat rate is a very good indicator of my reactivity to various substances. Prior to learning about toxic mold, I used it to gauge my food sensitivities (which have now disappeared). Then I used it to gauge my reactivity to moldy buildings (which have decreased to moderate rather than extreme levels). Now it is correlated to my exposures to the "?".

    Hopefully people eventually will consider the relevance of the HLA DR genotypes with regard to extreme vs. moderate vs. low reactivity. It's an important topic.

    Best, Lisa
  15. soulfeast

    soulfeast Senior Member

    Messages:
    401
    Likes:
    40
    Virginia, US
    ? in the air = external cause

    what if it is internal and triggered by certain weather conditions?

    Anything that limits where I can live!!! this much is going to trigger me to question.

    This if true is a diff paradigm to accept.
  16. soulfeast

    soulfeast Senior Member

    Messages:
    401
    Likes:
    40
    Virginia, US
  17. soulfeast

    soulfeast Senior Member

    Messages:
    401
    Likes:
    40
    Virginia, US
    I tried to snip... its more than mold or anything else but its as frustating as all "get out" to get a spiritual healing. (small haha) The multiple personality fact is compelling as well.. telling as well.. but we do what we can do and try not to go insane or add more fuel to the ANS, adrenal, cytokine fire in the process. The body can switch modes..

    The extreme mold and or ? avoidance is a physical attempt to allow the body to do that from what I can tell.. and it makes sense in that way.. if you can without killing yourself.

    I get bringing down the cytokine load.. that makes sense.. I dont quite yet get the role of sensory storms in chronic illness.. I do get their role in keeping the ANS so whacked out that it may be difficult for the body to calm down enough to heal... assuming no cytokine response associated, but if one is, and that is very plausable then it makes sense to avoid if one can.. so the body can calm down.

    My sister had her own way that seeminly bypassed that. As seemingly these people you are referring to below if they had this cytokine rage going on as well.

  18. dannybex

    dannybex Senior Member

    Messages:
    2,170
    Likes:
    514
    Seattle
    Hi Lisa,

    I'm guessing this part of your post was in reply to my questions? If so, thanks for your replies. I hope you didn't think I was doubting yours or Erik's stories as I certainly do not doubt them...I had always heard that Erik was part of the (as I think he called it) 'original' Incline Village cohort, so I was curious about how many other folks from that outbreak follow in his footsteps or took his advice. Had I been there and seen his recovery I can't imagine not taking him seriously and following his avoidance protocol, so I'm kind of shocked that it seems like more people didn't do just that.

    Interesting that Erik became alarmed/aware in 1980...five years before the outbreak(?)...

    I do know several people who have recovered anywhere from 70 to what one calls 1000%(!), but getting them to talk about it might be difficult, as it seems like many (like Mike Dessin) have told their stories only to be harrassed off boards by people questioning if they ever had 'real' CFS. Of these five or six people, I know one had MCS as part of her CFS/ME, and one did have serious mold issues at one point in her illness, but they resolved when she moved to a different house. All of them used many different means to heal and recover, because they all had different issues/triggers/sensitivities.

    I'll try to see if I can convince them to contact you -- I think a study or book about recoveries, even if they're not 100%, is an excellent idea.

    Thanks,

    Dan

    p.s. Dr. Klimas has been quoted about patients of hers who have recovered...perhaps her office could put you in touch with some of them???
  19. slayadragon

    slayadragon Senior Member

    Messages:
    1,087
    Likes:
    369
    twitpic.com/photos/SlayaDragon
    >I do know several people who have recovered anywhere from 70 to what one calls 1000%(!), but getting them to talk about it might be difficult, as it seems like many (like Mike Dessin) have told their stories only to be harrassed off boards by people questioning if they ever had 'real' CFS. Of these five or six people, I know one had MCS as part of her CFS/ME, and one did have serious mold issues at one point in her illness, but they resolved when she moved to a different house. All of them used many different means to heal and recover, because they all had different issues/triggers/sensitivities.

    In December 2007, Mike Dessin and Erik had an e-mail conversation. Erik's comments are below.

    In early 2009, Mike had moved from his very moldy house in California to his father's place in Columbus.

    He concluded that his dad's residence had mold in it, and so he insisted that his father find a different apartment for him. He then followed Erik's instructions of discarding every belonging that he owned.

    Immediately after that, he started neural therapy. At first, because he was unable to move, the practitioner came to his apartment. Mike asked the practitioner (who appears to have a sense of such things) if the apartment was okay in terms of mold, and the practitioner stated that it was.

    By summer 2009, Mike was well enough to make his story public.

    In July 2010, I visited Mike in his current residence in Columbus. The home was excellent in terms of the presence of toxic mold indoors and acceptable (without a trace of the biotoxin that I have been calling the "?") outdoors. This was so unusual that I asked Mike if I could stay there for a while, and ended up babysitting his dog Dixie (a delightful beagle) while he went on a trip.

    I'm not saying that mold avoidance was solely responsible for Mike's recovery. I've done a huge amount of neural therapy myself over the past two years and am aware of its power.

    What I am saying is that, as a preliminary hypothesis, I believe that it is impossible for an ME/CFS sufferer to recover if s/he is in a home that has substantial amounts of Stachy in it or getting any sort of regular exposure to the "?".

    Whether people absolutely need to discard contaminated belongings in order to get to a full recovery is unclear. I don't have enough cases for that.

    However, Floyd is only a moderate responder, but the sole remaining contents of his bad home knocked both of us for a loop when he opened the plastic box they were in. On another occasion, he was bothered so much by a used book he picked up that he felt the need to discard it from his car. (It bothered me too.)

    So far, the recovered ME/CFS'ers I've interviewed have mostly/fully recovered after moving to into a home that they insist is excellent with regard to toxic mold (either as a result of testing or because they know they're reactive to it in general). They then have pursued other treatments (antibiotics, antivirals, herbs, candida control, methylation detox, spiritual healing, avoidance of chemical triggers, etc. etc.) and gradually improved.

    In the cases I've seen so far, people have either gotten rid of their contaminated belongings or not substantially improved until five years after moving to what they state are good residence(s). Erik suggests that it takes about five years for contaminated possessions to die down, so this is consistent with his observations.

    Of course, if people don't improve until five years after they think they are clear of mold, they're not going to attribute their recoveries to the avoidance of it.

    I'm not suggesting that people can get well solely through avoidance. I'm suggesting that the more free that people are of biotoxins, the more likely they are to have treatments of any sort work, and that at least moderate avoidance is necessary but not necessarily sufficient for wellness.

    I'm also open to the possibility that once people with ME/CFS have achieved wellness, they may be able to maintain that wellness without the need for anything but "mild" avoidance (e.g. not living in places that would lead to other currently healthy people getting sick). Since I now can be around substantial amounts of toxic mold myself, and since most places are not substantially influenced by the "?", I actually almost fit into that category myself.

    Again, so far, I have only anecdotal case studies. I am not insisting I am right in my hypotheses. My only goal is to make a case that the phenomenon is worthy of rigorous scientific research.

    Thanks very much to those who have suggested further potential interviewees. Again, I welcome any suggestions that people have.

    A compilation of Erik's writings is available. If anyone wants a copy, please let me know. A few comments from it are below.

    Best,

    Lisa (slayadragon at ya-hoo)

    *

    Mike-

    I've read your description that you are going to die.

    Without knowledge of the extent of your organ damage, I can't venture an opinion, but I remember Dr Erich Ryll's description of his Infectious Venulitis '75 cohort was exactly the same as our "Incline Village '85" CFS epidemic: We all believed we were going to die - were looking forward to it, as there was no relief in sight, and woke up every morning amazed that we could suffer so much and NOT have died during the night

    I know of quite a few people who have abandoned their belongings and moved to a "feel good" climate/location and have gone from bedridden and feeling absolutely doomed - to recovering somewhere between 80-90%. Did you see that Bunchy described going to the coast and feeling "50% better"?

    Right now, I know a gulf war veteran who "hit his limit" of toxicity up here at Lake Tahoe (of all places) and has gone to the coast for some fresh air - because he has learned by long experience that he can make an amazing recovery there

    I built a "Mobile Environmental Control Unit" for myself - with Hepa filtration to pressurize the interior - which is constructed of mold resistant metals and plastics. It looks like a normal RV, but is entirely customized.

    This has been so miraculous, and I see so many other people complaining of exactly the same clues which led me to do this, that I have no doubts at all that vast numbers of these people could experience a similar level of recovery - if they act before their organ systems are irreparably damaged by chronic inflammation.

    I'm sorry to hear about your advanced condition - but I can't help but wonder that even at this stage, if you were to get to a really "pristine" area for a detox, as Dr Myhill suggests, that at the very least, some of your suffering might be decreased. If only more doctors would get on board with this, an affordable "Detox Center" might be devised. It wouldn't take much. Even a tent in the desert has been enough to allow a significant number of people to crawl back from a really low point.

    Thanks for being one of those who thinks I'm not totally full of crap. Means a lot to me.

    -Erik (2007)

    *

    Mike-

    No. A mold specialist cannot help. This reactivity is just like the peanut allergy I described in Mold Warriors.

    Just a few molecules in the wrong place can knock a person flat. Like a knife that was used to cut a peanut butter sandwich and then used on a sensitive person's sandwich. Or that girl in Canada who died after ksssing her boyfriend - who had just eaten a PBJ.

    I was in a mold zone yesterday and put my shirt aside. This morning I held it up to my face - and sure enough, it has the "badness" on it. Doesn't feel all that killer at first. Just heart palps and a slight feeling of "brain compression".

    But that "badness" adds up, and eats away at you over time.

    That's the major difference in what I did. My military training told me to control for "cross contamination."

    Our CS gas was just like this. If you hung up your jacket without washing it and it was touching some other clothing, that little bit of contamination would slam you later. The biowarfare instructor would tell us, "Some dumbass is going to think he doesn't have to wash his stuff because it doesn't seem to be all that bad. They just have to learn the hard way."

    Sure enough - they would put on something later and start yelling.

    I remember a gal who had suffered for years - tried everything in the book - and suddenly she just started to recover. She had no explanation for it, and said "Absolutely nothing in my life has changed, except that my husband retired and is hanging around the house all day."

    Well, it sounds to me like she instinctively "hit" on exactly what changed. Her husband was no longer going into a Stachy infested workplace and carring the spores home to kick her ass.

    Yes. That is all it takes. This mold reactivity is a mothaf***ah.

    -Erik (2007)

    *

    I got slammed while on a construction project in Berkeley in 1980. It was on the UCB campus, right next door to the School of Law.

    While I was feeling so lousy, a guy that I was going to meet for lunch to hear his WW2 stories walked in the front door, downstairs, apparently very chipper and feeling just fine.

    Not a sign of what was about to happen.

    Poured himself a cup of coffee, sat down, had a massive heart attack and died on the spot.

    Since I felt bad and my heart was pounding after walking in the door, I didn't think it was a coincidence, but nobody believed me.

    After all, "Mold is just an allergy, and even if his heart attack was triggered by a mold allergy, that just shows that it was his time to go because allergies don't kill anyone.”

    Two other people on our crew became ill and started going to doctors.

    One was a plumber, who suddenly acquired a reactivity to poison oak that he hadn't had before. The other was an electrician who started feeling tired all the time and became so reactive to wheat that his doctor told him that he had to give up all sources of wheat... including beer, which sounded to me like a fate worse then death.

    I just couldn't seem to shake that slam.

    I started going to doctors. They had never heard of anything like this.

    Seemed like every time I went into a bad building after that, not only would I get knocked for a loop, it was a guaranteed nosebleed.

    -Erik (2009)

    *

    The first person I saw who described this illness to me perfectly was in 1980 down in the South Bay Area, not too far from Silicon Valley.

    Five years before I saw it sweep through Incline.

    It wasn't the illness that was unbelievable, it was the response of people around her. I saw people choose what to believe and completely ignore her physical appearance and everything she said.

    She obviously had no name for this, but different people could look at her and the reaction ranged from "obviously ill" to "can't prove it.”

    But I was there the day she hopefully went to a doctor who had seemed sympathetic and returned home in tears, totally devastated.

    She told us that the doctor had diagnosed her with "Doctor Seeking Behavior,” a mental illness in which people wander endlessly from doctor to doctor trying to obtain validation for their imaginary complaints.

    The doctor said, "She believes her illness is real and the worst thing you can do is feed into it by validating her.”

    And then a peculiar thing happened. Those who had been believers and said the illness was "obvious" showed no backbone to their beliefs and went mentally limp, while those who tended to the "can't prove it" went wild in their righteous condemnation and denial - totally confirmed by the Godhood of Doctordom.

    I just about lost it and yelled, "Look at her. Look at her.”

    Here's where it got interesting. The few who had initially supported her stood silent while the denialists showed the greater fortitude and focused all their "if the doctor says" BS on me.

    Nothing less than a baseball bat was going to alter their opinions, and since I didn't want to go to jail, there was nothing much I could do.

    But a silent rage built up in me, and I said to myself, "If such a thing should ever happen to me, they wouldn't do that to me. I wouldn't let them! For there must be a lower threshold to stupidity that even these people cannot descend below. It would be impossible to watch an athlete be overcome in such a way and reach that ridiculous conclusion. To apply something like that to someone like myself would be too far beyond the pale, even for idiots like these.”

    And then it happened to me!

    -Erik (2006)

    *

    >You stated that the first time you met someone with the disease that later was named CFS was in 1980. Where did she live?

    It was in an apartment complex, south of San Francisco Bay, that was full of people complaining of mysterious rashes, illness, and sudden deaths.

    Doctors couldn't find anything wrong, and as far as I know, the concept of sick building was never even brought up, as if all of this was some kind of bizarre coincidence.

    I was visiting, and the place just beat the crap out of me.

    I didn't know her at all, just that her complaints had a familiar ring. When she related how badly the doctor treated her, it made me angry, because this place surely had the capacity to put me in the same position.... given enough time.

    All I later heard was that she moved out and got better.

    -Erik (2009)

    *

    My "sudden onset" actually started when I inhaled a blast of mold, so I knew for sure that mold was a significant factor.

    It was August 1984. I can’t remember the exact date, but I was out in some sand dunes on the coast and suddenly the whole world turned sideways.

    This was such a strange sight to see that I didn't even realize that it wasn't the world turning sideways until the side of my head hit the ground.

    I went, "Whoa! That’s never happened before."

    That was the first utterly neurological sign that something was wrong. I just suddenly totally lost all perception of balance.

    I did not have any head injury at all. This was soft sand.

    I had plenty of mold slams before that, but this was like nothing I had ever felt.

    That's when I went to see Dr. Cheney.

    When you read Dr. Hyde’s description of ME progression, he talks about these precursor episodes before fully descending into illness.

    I didn't get the full sore throat and all other CFS symptoms until a year later. Since no one was listening to me about these precursor problems or about the mold, I thought that eventually when CFS researchers began to research CFS, I could tell them about it.

    -Erik (2010)
  20. slayadragon

    slayadragon Senior Member

    Messages:
    1,087
    Likes:
    369
    twitpic.com/photos/SlayaDragon
    Jen,

    I have absolutely no problem with the idea that people might need to avoid other substances besides Stachy (and maybe some other indoor toxic molds) and the "?" outside in order to get well.

    I mentioned that above:

    >So far, the recovered ME/CFS'ers I've interviewed have mostly/fully recovered after moving to into a home that they insist is excellent with regard to toxic mold (either as a result of testing or because they know they're reactive to it in general). They then have pursued other treatments (antibiotics, antivirals, herbs, candida control, methylation detox, spiritual healing, avoidance of chemical triggers, etc. etc.) and gradually improved.
    >
    >I'm not suggesting that people can get well solely through avoidance. I'm suggesting that the more free that people are of biotoxins, the more likely they are to have treatments of any sort work, and that at least moderate avoidance is necessary but not necessarily sufficient for wellness.

    What I said was that I believed that people need to be free of more than small amounts of Stachy and the outdoor biotoxin that I am calling the "?" in order to have a base to get well -- necessary but not necessarily sufficient.

    For me, avoidance of specific other biotoxins (including a "minor" toxic outdoor cyanobacteria present in the Midwest) has been important.

    Based on everything that you have told me, avoidance of a wide variety of chemicals such as air freshener is important. Your acute sensitivity to those chemicals (substantially higher than anything I've experienced) makes this "journey" (ha!) particularly difficult for you, and I'm quite sympathetic to that.

    Another recovered person (associated with the Incline Village epidemic although not one of the original cohort) said that scrupulous avoidance of even tiny amounts of gluten has been essential for her recovery.

    Unfortunately, many of us have triggers in addition to the ones I suggested may be essential for all of us to consider. That's why I'm a little reluctant to pursue setting up a "Detox Center" (as Erik mentioned above) for people to try to recover from this illness. For some people, even a whiff of lemon or a touch of Seventh Generation detergent is enough to push them over the edge.

    It's a lonely journey we're on.

    Nothing in this is predictable. Locations change from moment to moment and sometimes go permanently bad. Wandering from place to place trying to find somewhere good is exhausting. Other people's assessment of particular locations cannot be relied upon, because things that matter to us (particular chemicals, minor biotoxins, altitude, concern about Lyme or other pathogens, hot/cold tolerances, need for certain types of healthcare practitioners, Web access, nearby Starbucks, EMF's, grizzly bears or rattlesnakes etc. etc. etc.) may not be important to them.

    My experience with driving across the state of Texas was that Dallas was horrific with the "?" and that the western part of the state was polluted by oil refineries. Unlike you, I didn't know when I was first starting out at this to decontaminate and clean everything in the car as soon as I got outside of Dallas and thus apparently overlooked the part on I-20 that you found to be good.

    My general feeling when you asked for my opinion was that I had heard enough bad things about Texas in general that I thought you might do better to look at areas that I or others had found to be good. I never thought that every square inch of the whole state of Texas was likely to be offensive, though conceivably it might have come across that way to you. The fact that you found parts of Texas to be good, and that you are now informing me about someone else who found other parts to be good, is encouraging about the state of this country in general and possibly may be helpful for others hoping to choose good places to visit or live.

    I continue to believe that the particularly bad stuff (which is what I am calling the "?") that both you and I encountered in Dallas is something that people need to be free of in order to recover from this disease. If you have since concluded that you could recover in that city, I would be interested in your letting me know.

    As a side note, the fact that you had the same reaction to the stuff in Dallas and the stuff in your apartment -- and that you have extremely rarely experienced that feeling anywhere else -- makes me suspicious that what I am calling the "?" is what was present in your apartment. Erik suggests that this "?" is rarely present in buildings, but that when it is, it creates a variety of extremely serious health effects in addition to ME/CFS or typical mold illness (which is what you reported happening in your rent-controlled NYC apartment). Insofar as this was the case, you had extremely bad luck in living in that building and were lucky to get out alive. In addition, if that was the case, my feeling is that conceivably you might be doing even better than you are now if you were to discard to the few items from that apartment that you still have with you....or at least to do a trial wholly away from all your stuff (including that which might have been cross-contaminated by the old stuff) to see how you felt upon re-exposure. It's hard to bite the bullet and do that, but this stuff is horrific enough that being ridiculously scrupulous may be in order if our goal is true recovery rather than just survival.

    It certainly is hard these days to find safe places. From all reports, England sounds like it has practically no safe places at all. I hope fervently that this does not happen to the U.S. but (based on Erik's reports about what has happened over the past 30 years) have no confidence that it will not continue to decline.

    This is why I have decided upon the goal of getting the attention of doctors/researchers rather than training patients to do avoidance. Perhaps if -- say -- pharmaceuticals that allow people to detoxify more easily and effectively are developed, we all will have a chance of improving or getting well regardless of what happens in the environment.

    Thanks much for your comments.

    Best, Lisa

See more popular forum discussions.

Share This Page