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Addressing Toxins in CFS: A MultiStage Process

Discussion in 'Addressing Biotoxin, Chemical & Food Sensitivities' started by slayadragon, Jul 19, 2010.

  1. slayadragon

    slayadragon Senior Member

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    Hi Shell,

    Unfortunately, I don't have any answers to how people can address the problems that stem from toxic mold exposures, insofar as they remain in those exposures.

    For those people who cannot currently escape sufficiently from those exposures, I cannot possibly give any better advice than respected physicians such as Dr. Peterson and Dr. Cheney.

    It's my belief that the bulk of these doctors' very ill patients are living with severe toxic mold exposures, and that over the past 25 years they have done the very best that anyone could in order to address those individuals' issues.

    Insofar as people have the ability to change their environments for the better, I have a few additional ideas. Please let me know.

    Following are some conversations that I've had within the past two weeks on the Yasko board with two recovered CFSers. I actually had no idea that a toxic mold problem had kicked off their illnesses or that they'd made special efforts to stay away from it as they recovered.

    There's also a little sidebar that I wrote for another board.

    Whether this will prove to be a theme in the other recoveries that I see, it will be interesting to find out.

    Best, Lisa

    *

    Just checking in after a couple years' absence. I've been off getting my Lyme 
treated. (And yes, it was Rich who figured out that Lyme might be my issue.)

    Good to be back -- I see there are some new wrinkles and understandings that I'm wayyyy behind on. Will need to catch up.

    I have a known mold allergy that was diagnosed 15 years ago. Earlier this summer, I vacationed for a few days in Maryland and Virginia's eastern shore -- within just a few miles of Rich Shoemaker's office, as it turned out, but I didn't know that until later.

    What I did know is that I came home from that trip sick as a dog. We stayed in several older buildings that I knew were moldy -- could smell it as soon as the door opened, and felt it like a hammer to the head the next morning. I also woke up with the telltale puffiness and numbness in my face and hands. It took over a week for my system to clear it -- and that's with my newly pretty healthy body. I know it would have taken a lot longer (or maybe never) before methylation correction and Lyme treatment.

    At any event, it reminded me all over again just how evil and pernicious black 
mold can be. I agree with the advice to get him moved ASAP, if at all possible. 
If it's not possible, get the house tested, so you have documentation to present 
to the landlord when you demand that it be fixed.

    In an older building, fixing it can involve stripping out the sheet rock and insulation, and maybe even replacing some of the framing. It's not a cheap or easy fix, and it wouldn't be surprising if the landlord put up a heck of a fight. Non-wood buildings, if available, are generally better (I started to be fine when we got back into DC and checked into an all-brick hotel) -- but in the west and southwest, there may be no other choice.

    I really am incredibly better now: durable, able to handle stress, and I very rarely lose days any more. The biggest issue now is deconditioning, which I'm working on with a good PT who combines table work with Pilates. Since I was 26 when I got sick and am twice that age now, it's not reasonable to use the energy levels I had before as the benchmark for now. But it's easy to imagine that I'm pretty much as healthy now as I would have been at 52 if I'd never gone through all this, and just let myself go a little instead.

    The mold is a cleanup issue -- a minor nuisance, like the candida, that I'll probably be managing off and on forever. Lyme did leave behind some joint damage and arthritis (again, I may have had this by now regardless) that will require surgical repair and/or pain management in the years ahead; so it goes.

    Other than those few things, the illness doesn't really define my life much any more. I don't have a caregiver; I haven't used my scooter in over a year. My handicapped plate expires in November; I won't be renewing it.

    As long as I'm careful to eat a clean diet and get all the sleep I need, the rest seems to pretty much take care of itself.

    The little career that started with taking a few grad school courses as Yasko began to work its magic has done well, too. My MS is moments from done; the client for my current project is the largest caucus in Congress. When that's done, it will be on to my first book.

    And it's good to be able to say out loud that you had everything to do with that, starting way back in 2005 when I was one of the original 60.

    -Sara Robinson

    **

    Following is an exchange that I had with another recovered CFSer (on the board devoted to Rich van K's and Amy Yasko's protocols). So far, all the recovery stories I have found of people who were sick with Canadian Criteria CFS for more than two years have included the following elements:

    1. Extended period of less than full wellness with vague CFS-like symptoms (sometimes since childhood or for years). 

    2. Substantial toxic mold exposure associated with decline into severe CFS. 

    3. Get out of the toxic mold exposure. 

    4. Get into a healthy environment (very good in terms of toxic mold, at least pretty good in terms of chemicals). 

    5. Detoxification. 

    6. Toxic mold reactivity decreases and general resilience improvements allows pursuit of more normal life (staying fairly carefully within boundaries in terms of all kinds of "ick")

    The ways in which people pursue detox vary from person to person. Most of us have treated various pathogens (Lyme/viruses) along the way as well, and done various other treatments.

    People fall into two categories with regard to their mold-contaminated stuff. Some (Erik, Jonathan, Mike, me) got rid of all their stuff immediately upon moving and started getting health gains within months. Others (Stormy, Laurie) kept their stuff and didn't get any substantial gains for 5+ years after being in the new place. It will be interesting to see if this pattern continues.

    I'd like to talk to as many recovered CFSers (they're quite unusual) as possible, in order to make this into a legitimate research project.

    If anyone has any leads of other people who might be good to discuss this with, please let me know!

    Best, Lisa

    *

    Hi Lisa,

    You may want to google mercury and PCB toxicity in the Inuits. I read an article on this several years ago. The breast milk of Inuit women have the highest levels of these two toxins of any human population in the world. The toxins are swept into the pristine environment of the northern oceans by the ocean currents. The lower temperatures prevent the toxins from being sequestered or broken down by microbes. The toxins then bioaccumulate along the food chain and concentrate in the blubber of sea mammals, which of course, are a mainstay of the Inuit diet.

    I agree with Rich, that our genetics make us susceptible to glutathione depletion and the world we live in provides ample opportunity for us to run into a multitude of toxins, infectious agents, or biological stresses that may send us into a downward spiral.

    You may be familiar with the book, The Canary and Chronic Fatigue in which Dr. Ali makes the comparison of people with CFS demonstrating the ill effects of the world we live in, much the way canaries are used in mines to detect a toxic environment. It's been a very long time since I read his book, so I won't go into his whole theory. But I have always thought that he was on target with this analogy.

    I believe the world we live in has become really unhealthy. And that is why the rates of Autism, CFS/ME, and some of these other chronic health conditions are on the rise. The difficult reality may be that we live the harsh consequences of evolution in action. Our genes are just not the "fittest."

    Anyway, I think there are a million toxins, infectious agents, and situations that we encounter that take a toll on our bodies. In short that it isn't one thing... no smoking gun. But that by living as clean as we possibly can and supporting our systems to manage what comes our way that we can recover a decent, even good existence. At least that seems to be what is working for me. Albeit no easy or quick task!

    I remain forever grateful to Rich for uncovering a viable way to boost glutathione levels.

    Best,
    Laurie

    *


    Hi Laurie,

    Obviously there are lots of very bad toxins out there, and I certainly think they all are having an effect on us.

    The world we live in is a very scary place. After spending 18 months pretty much in the Godforsaken wilderness and small towns, I braved the outskirts of Denver. I started feeling sick immediately and thought to myself, "What the **** have we done to this planet? How can people live in conditions that are so far from what we've evolved to deal with and possibly be alive?"

    It was a "Planet of the Apes" moment. Like it wasn't just the biotoxins that were the problem, it was civilization as a whole.

    I also agree with Rich that there are all kinds of things that can have enough of an impact on us to deplete glutathione reserves and cause us to fall into poor health. I suffered from all the ones he mentioned and more during the two years prior to getting sick: a series of three Hepatitis B shots (mercury and immune activation), severe emotional stress as a result of the conversion of my "soft" bipolar into a rapid cycling nightmare from poorly prescribed drugs, an intense and intellectually stressful Ph.D. program, a head injury, a pregnancy/miscarriage, and a "killer flu."

    The problem that I have is that people use this "everything and anything" concept to think that they can make progress using Rich's protocol (and, if that doesn't work, tens of thousands of dollars worth of additional supplements from the Yasko site) without moving out of their moldy residences.

    From what I've seen, I don't think it works like that.

    When I visit CFS patients in their homes (and I've done that a lot), their debilitation corresponds just about perfectly to the amount of mold contamination I find there.

    The ones who are sick are in places where I would be just as sick, no matter what treatments they're doing.

    Whenever I encounter CFSers who have recovered (not too many), they attribute their recoveries to various things that they've done. Usually there's some detox involved, and often some sort of pathogen treatment.

    I don't doubt that those things had a good effect for them. I'm wholly convinced that Rich's protocol (as well as Valcyte/Famvir) has been hugely helpful to me, for instance.

    And I even think that maybe if I'd taken Rich's supplements to begin with I'd have stayed well. Mold or no mold. XMRV or no XMRV.

    (Maybe.)

    But so far, all the folks I've found who have recovered from long term moderate or severe CFS also have been living in homes that are really excellent in terms of being free of any significant amounts of mold contamination.

    Moreover, so far, all these people have KNOWN that their homes were good in terms of mold contamination....and that they get sick right away if they get around too much mold.

    So they avoid it.

    They just don't ever bring that part up to anybody, unless I do it first.

    It doesn't seem important. It seems obvious. It seems coincidental.

    But it's part of a pattern.

    It's a foundation for doing other things.

    I want to find out what those other things are. That's why I asked to talk with you about your recovery. I want to add that to the other case studies that I have of people who have gotten really well, to see if we can make some sense out of how to get out of this mess by looking at commonalities and divergences. I don't think that anybody can do one thing that turns out to be a "cure" for this disease: from what I've seen so far, it seems to require a balancing of a number of factors.

    However, I do think that if people live in an environment that is toxic (and especially if it's toxic with a substance that exerts its toxicity through inflammation, oxidative stress and immune destruction), taking a few supplements isn't going to do anything for them at all.

    Not if the problem that's being addressed is CFS, anyway.

    Maybe I'm wrong. Maybe you'll tell me that your own house is a mold pit and that you're doing wonderfully well in it anyway.

    In which case, I'll stop all of my CFS/mold education efforts and go devote my life to a job that will make me some money. :)

    Thanks much for your note.

    Best, Lisa


    *


    Hi Lisa,

    I couldn't agree more! Probably impossible to reestablish healthy glutatione levels while living in a moldy residence, or eating processed food, or having chronic exposure to anything that will continue to tax the detox system. In short, one has to bring the total body burden of toxins, stress, and activity below a certain threshold so that the body can use its energy (what little it has) for the sole purpose of healing. I also believe that I would not have recovered without extensive diet modification. And, while I veer a little off dietary course with a little dairy or wheat, without strict attention to my diet I am at risk of relapsing.

    You may remember that I lived in a house with a horrible mold problem. My health degraded greatly during this time. I was not yet diagnosed with CFS/FM. I had been plagued with symptoms since childhood and I was just beginning to investigate what might be the underlying issue. Hard for me to pinpoint how much of my decline was due to mold. I'm sure it was significant, however I was also under a lot of stress and I had a long history of fatigue. We did move, however we did not replace our belongings. I remember getting a really bad cold and my husband having a major asthma flare after moving and I just knew that it was induced by the extreme mold exposure that the move brought on. That was about 8 years ago.

    It's been 6 years since I was finally diagnosed and began my intensive healing journey and 3 years since I began Rich's simplified program, of which I was religious with for 6 months and then began Yaskos full protocol for another 6 months and then quit everything. So for two years I've done very minimal supplementation and have had no major flares. I believe my methylation cycle to be fully functional again. I don't believe that I have eliminated all of the heavy metals that had accumulated. I quit the full protocol because I was experiencing an increase in inflammation. I had intended to go back to a more basic supplementation program including Rich's 5. I just never really got around to it. Plus the full protocol had really depleted the last of our financial reserves.

    This spring we moved again. Guess what I found in the process? Yes, mold! I should have known. It was in my husband and my bedroom. He had been sleeping on the couch for several months. Every time he came to bed his nasal passages would congest and he wouldn't be able to sleep. But I didn't get sick. Even in the moving process I didn't get sick (and I did the bulk of the moving). I think it is a testament to the possibility of recovery for all of us. I also know that the type of mold makes a difference in how it effects us as well. So maybe the second mold bloom was a less toxic type.

    I could go on forever, which is why I rarely post. I just can't narrow down my thoughts, beliefs, or experiences to be what I consider meaningful into one post!

    I applaud your commitment to your health and recovery!

    Best,
    Laurie
     
  2. Wayne

    Wayne Senior Member

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    Concrobium

    Hi Lisa,

    Thanks again for all your good information. Was great to hear from Laurie after all this time.

    Wanted to mention briefly tonight an anti-mold remediation product you may be interested in (if you haven't already heard of it). An acquaintance/friend of mine has pretty severe MCS and is especially vulnerable to molds. He found a product called Concrobium that he used to completely decontaminate his van (which he lives out of because of his health).

    I tried to locate this product once at a Home Depot store, but it was not available here locally, so I've never tried it myself to see if I could tolerate it. It was apparently developed with the specific intention of having it be environmentally friendly. Anyway, thought I'd let you know.

    I'm hoping to get back to you on the glutathione thread sometime soon. I'm curious how a person could go about getting the supplies that you use; as in, does it require a prescription from a doctor, etc.

    Regards, Wayne
     
  3. kerrilyn

    kerrilyn Senior Member

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    Wayne, thanks for that link. By the listing of suppliers, which include Rona and Canadian Tire, it looks to be readily available in Canada. I will have to check it out.
     
  4. slayadragon

    slayadragon Senior Member

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    It looks like this product gets rid of mold itself, but that doesn't mean there won't be toxins left behind. Also remember that the really bad toxic mold is hidden where it can't be easily found. Usually cars/vans don't have a lot of hidden mold (except in the air conditioner), but houses or RV's are another matter.

    Log cabins with no drywall seem pretty safe to me. Any molds that would grow in them likely would be pretty harmless, and this product likely would work on them just fine.

    For other uses, I wouldn't plan to rely on it too much.

    Best, Lisa
     
  5. soulfeast

    soulfeast Senior Member

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    I meet most of the critera of RIch VanK's post down to the detail. We had a mercury spill in the bedroom; I had recently stained and poly coated 3 large pieces of furniture strupidly without gloves; recent stachy growth in shower wall; and so on.. I cant remember the list.. oh.. pesticide poisoning as a child and many spider and tick bites and on and on. Town home next to ours before we moved into this house had water damage so bad the woman who lived there moved out and left it.

    We remediated but are leaving our home in two weeks. I cant get to a super clean environment.. where I am going is a humid state and family all have some degree of water damage issues in their homes they are beginning to work on. I do feel better after the remediation. Soon after I was bitten by a tick that seemingly might have been infected. I didnt know I was bitten but discovered the bite and swlooen lymph surrounding when I started having drop dead fatigue and neck aches. Treatred for 5 weeks and was surprised that I could handle it... it took me out quite a bit but there were times I was thinking this is not so bad!

    Since off the abx and about 6 months after remediation ( sealed room, scrubbers etc going and left for days after).. I am feeling a shift in my symptoms. I was progresively getting worse.. more and more sofa bound and so weak. My muscles could not recover or breath. I got to the point I would cringe at the idea of picking up a plate with food on it. Also very strange anaphylactic feelings yet no pos IgE.. shaking tremoring attacks and evntualy the ER with non stop for days breathlessness. Gait issues worse (clinical diagnosis for lyme and pos IgG for babesia), awful nerve "creepies" all over my body (glutathione has helped this). Lots of nsuro symptoms. Swelling in my sinuses that would then go straight to my brain and then lead to brain fog, deep depression and a catatonic like state.

    I now can tell when the sinus, brain inflammation is being triggered.. the dust in this house for one and the chemicals in new products like a suit case I have here. I am stil weak but not as weak. Whereas before I would force myself to go to gro store and would push myself (I know not a good idea) because I didnt know when I would feel ok enough to go, I am finding myself not thinking so much about going off to the store to pick up a few items.. its little things like that.

    My MD is working with me to draw the shoemaker labs.. some of them.. and Im taking the VIP DX PCR and serology tests and we may do a babesia panel.. although I am debating this because it rarely shows up anyway and if I move and start detoxing and get better.. then we know.

    Once settled in I am starting the csm and macron treatment. I tested pos for this 3 years ago as well as low msh, vip and a few other labs (long story and this is already too long). We shall see how the labs go and if moving without belongings further helps. I know I need to address the pesticides and mercury/heavy metals as well.

    A local man I ran into who has recovered to about 90% from mold illness also moved and though took some belongings quickly got rid of them when he saw they triggered a hard relapse. He used csm, antifungals, and other detox therapies as well as an antiviral.He explained about toxic load and how you start taking more and more of the load out.. a concept we are all very familiar with.. it explains why a small bit of mold or chemical etc can be a trigger and take one down fast.. this I had not considered.

    We area also considering outdoor environment and do not think the place we are temp moving to will be an ideal place because of the high humidity, though less desciduous trees might be helpful.
     
  6. soulfeast

    soulfeast Senior Member

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    Housing

    What about adobe? Esp if concrete walls?
     
  7. soulfeast

    soulfeast Senior Member

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    Im interested to find out if I can take herbs for lyme or babesia or fungus infection and not crash at all after getting some of this inflammation down in my body.. esp if the retrovirus is not at play here and even if so if the removal from the mold house will help there. It cant hurt.

    I did recently take on too much and the inflammation was like I walked into a furnace. I easily went up to full dose of enula, samento, banderol (last two attack all forms of lyme including cysts, first babesia), and fairly high dose of OLE. Added in ALA on top of that with methyl b12 shots 1 mg. That did me in. My husband who interestingly has one of shoemakers "dreadeds" and lyme did fine on a year of abx.. barely "herxed" and was fine here with the stachy.. so there is more to it than the HLA type/mold combo.... which may end up being the retrovirus.. we shall see.

    I also have the HLA for low msh which I think makes the "dreaded" even "more dreaded". Possibly that could be a factor.. I dont know if my husband carries this HLA. We tested my daughter who has a diff "dreaded" than I do and the low msh HLA.. so we can assume my husband has her dreaded.. ugh to that term.
     
  8. slayadragon

    slayadragon Senior Member

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    Adobe leaks like mad. I think it would be okay if there were NO drywall, but I didn't run into any buildings like that when I was in the SW. So I learned to avoid adobe like the plague.

    Best, Lisa
     
  9. slayadragon

    slayadragon Senior Member

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    Doing anything to kill pathogens will be much easier when biotoxin exposures are lower, in my experience. The correlation was just about perfect in my experience.

    The amount of toxins needed to trigger a reaction is so stupidly low that I have to think there's something dreadfully screwed up in the immune system. A retrovirus makes more sense than anything else I've heard.

    But with 7% of healthy blood donors testing positive for the retrovirus, I also kind of agree with the idea that the virus might reasonably be considered "background noise" and that an equally valid way to look at it is that the causal factor is whatever causes the retrovirus to become activated. Which brings us right back to the mold.

    Unfortunately, attacking the viruses directly tends to increase inflammation. And there's only so much inflammation the body can take before it becomes ineffective at treating the viruses (and totally burnt out).

    Which is why i put so much emphasis on avoidance. If you can reduce the inflammation that way, then the pathogens can be attacked without too much inflammation. And then more mold can be tolerated in the future.

    At least, that's how it goes ideally. It's a very delicate balancing act though!

    Best, Lisa
     
  10. soulfeast

    soulfeast Senior Member

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    That makes sense to me, Lisa. We'll see how much I can avoid without driving myself and family insane. I think stress can also exacerbate inflammation so its def about balance. Ther is only so much inflammation the body can take. I think its inflammation that is my worst enemy.
     
  11. xchocoholic

    xchocoholic Senior Member

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    Hi Slaya,

    I didn't read this whole thread but it stands to reason that we can get a huge jump on eliminating toxins if we take all of them out of our diets and add in healthy foods. IMHO, Anyone with a chronic illness should do this asap too. After 5 years on the web, I'm still amazed when I hear people talking about how hard it is to give up their sodas or junk food when they really need to bite the bullet and stop feeding their bodies food that it can't recognize. Dr. Oz has a nice way of saying this ... If you can't pronounce it, don't eat it. Info on what foods our bodies need is readily available on the web too. I'm partial to the Paleo diet since my digestive tract requires this for me to function ..

    I'd start with that and let our bodies adjust to the new change without using a lot of supplements. This way our bodies won't get confused or overwhelmed if we get too much of something .. I'm running into this right now. My NutrEval test showed that my body is confused by the amount of 5HTP I'm taking so I cut my dosage down by 1/2 last night ... and well here I am wide awake at 5 am ... lol ... tc ... x
     
  12. slayadragon

    slayadragon Senior Member

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    Absolutely. Everything that I know suggests that our bodies have a hard time eliminating toxins and are under huge toxic burdens, so doing everything that we can to avoid toxins of any kind is tremendously important.

    (I do eat some chocolate once in a while though.....)

    Best, Lisa
     
  13. Xhale19991

    Xhale19991

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    Wow what an amazing story Mike has.

    I know Mold is a huge issue for me. Excited to see the mold doc I found in a few months and get this under control.
     

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