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Anyone recovered after discovering residential toxic mold exposure?

Discussion in 'Addressing Biotoxin, Chemical & Food Sensitivities' started by greyham, Jun 25, 2010.

  1. Dainty

    Dainty Senior Member

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    Right, the house is not built to code. Unfortunately, building code regulations are not always the healthiest, for example most now require homes to be built so that the rooms are basically airtight.....but then that was causing problems, so now codes require that they be both airtight and have an air exchanger thingie to compensate for it. Ridiculous, isn't it? Building codes are supposed to be there to make things safer, for example making sure htere's a heat source, adequate fire escapes, and things like that, but some of them just end up making things worse, at which time you want to find acceptable ways around them such as moving to a place with fewer or no codes, buying something that was built before the codes were in place or making your own.
     
  2. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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    Building codes are supposed to be ther also to reduce costs for a home owner in the long run.

    A reason for an airtight home is to reduce cost for heating and cooling. Most, if not all codes, also should have something in their in regards to insulation. If a house is not insulated, again it is going to cost you a lot more money for heat and cooling, which can add up to a lot of money in the long run!
     
  3. xchocoholic

    xchocoholic Senior Member

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    Lisa,

    I personally wouldn't consider Stormy recovered and I don't think she would either. The last time I heard from her she was still getting sick on a regular basis like so many of us who've made progress with this DD. And I see that on this thread, that someone considered that you're recovered too. IMHO, I don't consider having to live in a tent in the woods, clean woods at that, to be recovered. And I saw that you're on the Paleo diet now. I can't remember why you said that you were doing this ...

    All of the healthy people I know aren't getting sick and needing to regroup on a regular basis. Which makes me think there is an underlying cause for your re-occuring symptoms that needs to be addressed. I know Catseye tested positive for leaky gut as did I ... Did you or Stormy ? I know Stormy had candida so maybe that's all she had.

    I understand the enthusiasm about having recovered as far as you all have because I've recovered quite a bit myself, but IMHO those of us who've made some progress need to keep in mind that this is just progress, not a "cure" ... IMHO, We can relapse at any point unless we get to the root of what's going on ... JM2C ... X
     
  4. slayadragon

    slayadragon Senior Member

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    Yes, that's true. But being sick is even more expensive.

    Best, Lisa
     
  5. slayadragon

    slayadragon Senior Member

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    Yes, I certainly am not cured. If I were well, I would be able to go to Dallas, the Bay Area, Ann Arbor or Truckee/Tahoe without fear.

    If Stormy were cured, she wouldn't have heart palpitations that made her fear for her life every time a strong wind came from the direction of Dallas.

    (I don't know what the Paleo diet is though.)

    I spent years and years scrupulously addressing food sensitivities. I avoided corn, citrus, dairy, eggs, peanuts/cashews,walnuts, strawberries/blackberries/raspberries, bananas, coffee, chocolate, sugar, and some other things I'm not remembering right now scrupulously. For YEARS. It helped a little. It didn't make me functional.

    I had all kinds of gut things tested and did all kinds of things for it. My doctor is really good at this. It helped a little. It didn't make me functional.

    And over time, I kept getting sicker and sicker and sicker. Addressing mold/biotoxins directly was the only thing that turned that trajectory around and made me functional.

    If I can avoid biotoxins really well, I am well. The problem is that in this world, it's unrealistic to have to avoid mold/cyanobacteria/etc. that much.

    Avoiding mold means that I don't have to avoid all those foods. I can eat whatever I want and stay well.

    No food avoidance allows me to decrease the extent to which I have to avoid mold. I wish it worked that way, but it doesn't.

    Treating candida may help to reduce my reactivity. Detox and neural therapy has helped. Valcyte/Famvir has absolutely helped.

    Nothing else has helped.

    Yes, I believe there is an underlying cause for my symptoms. I think the underlying cause is a combination of having the retrovirus plus a lot of previous mold/biotoxin exposures.

    Insofar as I can get the retrovirus under control and detox the stuff that's in my system, my reactivity to mold seems to go down. But it's by no means normal. Otherwise I'd be able to go spend the weekend in Ann Arbor despite the presence of all the cyanobacteria there.

    I have recovered my health INSOFAR as I follow Erik's approach to avoidance. That is a recovery. People may not want to emulate the way I live my life (I'm not actually in a tent or in the woods, but never mind), but it's still a recovery of my health.

    I've known very very few CFSers who have recovered their health no matter what they do or don't do.

    Do you know anyone else? I want to go visit them if you do, to see what kind of environment they're living in. Please let me know.

    Best, Lisa
     
  6. Victoria

    Victoria Senior Member

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    Lisa,

    I think you make an interesting point.

    Total avoidance of the individual things one reacts to, makes many ill people better.

    But, this does not mean recovery. What sort of life does anyone have when they have to stay home & eat a selective diet all the time.

    "Recovery" means doing anything & everything normal people do in their lives.

    Most of the time, my FM pain is minimal these days (in retirement). But that's because I don't do anything (except a slow walk for a couple of hours every other day).

    As soon as I try to walk briskly (like I used to back in 2003), I get chest pain. If I walk too much, I am really tired. If I eat the "wrong" food, I am dizzy, have tachycardia & bowel pain. I go to bed late & get up late these days. I ONLY get up after I feel fully rested. If I have a bad night & can't sleep (rarely now), I am totally exhausted & can't think straight the next day.

    Every time, I think I am fine, something happens which reminds me of the reality of being chronically unwell. Last night I was fine, but I dropped a kettle of boiling water on my foot. The kettle spout is crooked & miraculously I had ugg boots on & didn't burn or damage my foot badly.

    People who are healthy DO NOT drop things like this. This is the first time I have dropped something in ages. I went through a period of not being able to pick up anything without concentrating on holding it very tightly.

    So for about 3 months now, I have been almost normal, but take me out of my comfort zone & "stuff happens".
     
  7. xchocoholic

    xchocoholic Senior Member

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    Lisa,

    Sorry, I got you confused with the Lisa who blogged on PR about going Paleo. Oh and I thought you were living in a tent .. Is that the other Lisa too ? lol ... not that there's anything wrong with it ... normally. But, living in a tent to avoid toxins is different / extreme. FYI ... I'm not judging you for your lifestyle choice, I'd do it too if I thought it would work. ; )

    I'm super sensitive to gluten. Meaning, if I come into contact with a minute amount of it, I'll react to it. Complete avoidance of gluten makes me feel healthy too but it's not reasonable. It can be on a shopping cart at the grocery store that I just touched and I'll get it in me somehow.

    So I wouldn't consider having to avoid x, y or z to the extreme that you and I do as recovery. There has to be a reason that we're reacting so strongly when others seem to be fine with it. It seems that our immune systems are over active ... whether a virus caused this or not, I don't know. Does anyone ? Does anyone know how to correct this ?

    On diet, I'm not a holistic practioner so I don't have the experience they do in treating chronic illnesses but most of the ones I've read about say that the most important treatment they use for recovery is a healthy diet. One that is designed with each patient's food intolerances and nutritional needs in mind. Since I'm not a holistic practioner though, I don't know how often this really works. Since this isn't something that would profit them though, I tend to believe it. Personal experience makes this all the more believable.

    I don't know anyone who's recovered from CFS. How did the very very few CFSers that you know that have recovered their health no matter what they do or don't do, do it ? Please let me know ... ; ) ... X
     
  8. slayadragon

    slayadragon Senior Member

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    I wonder how many people on this board confuse me with the other Lisa!

    I did live in a tent for five months, detoxing in the Godforsaken wilderness. Since then, I've been mostly in a little RV. But I'm having so little problems with buildings that likely I'll try to find a real home soon. I just need to figure out where I want to be based and then find a really good house.

    At this moment, I'm sitting in Mike Dessin's house just outside of Columbus, Ohio. It and the air outside are truly excellent with regard to toxic mold. Not as good as the Godforsaken desert, but good enough that I could be perfectly healthy living here now.

    So I can see how he has recovered. "Mold avoidance" (he mostly just lucked into being in such a good place) gave him a foundation, so that he was able to benefit from other treatments.

    And he actually is recovered, at about the same level that I am. His recovery process (both in terms of what he's done and the experiences he's had) has been almost exactly the same as mine.

    So I feel pretty certain that what I've figured out on my own isn't a fluke, and that it will last. And that I can make more progress if I just continue on this path.

    Both Mike and I had severe food sensitivities when we were sick. Now we have no food sensitivities at all. Erik's food sensitivities all went away too.

    My next step is to put together some materials that detail our experiences (along with those of Stormy, Erik and others who have recovered). They're all consistent enough that it's seeming like there is a road out of this illness.

    But only if it's done in exactly the right way.

    Best, Lisa
     
  9. xchocoholic

    xchocoholic Senior Member

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    Hi Slaya,

    Sorry again about getting you confused with the other Lisa ... it's just another day in CFS world ... lol ...

    Is it possible that what we're talking about here are the various subgroups of CFS/ME ? And this is probably based on our genetics.

    You've "recovered" via mold avoidance and therefore connected with those who've responded to mold avoidance. And I've seen people on the food intolerance boards talk about being diagnosed with CFS or FM and giving up gluten or dairy or corn or soy or msg, etc etc etc and being normal afterwards. I've also met some that insist that going on the candida diet cured them of CFS or FM. Some will even heal spontaneously ... There appear to be several factors in this DD ...

    I was thinking this DD was all from leaky gut but the more I hear about other treatments, the more I wonder ...

    This is what I thought was going on .... dr. betsy hendricks giver her take on FM and autism ...

    http://www.freewebs.com/arcenter/conditionstreated.htm

    Um, and then there's ones like me who have celiac and candida and leaky gut and several autoimmune diseases, etc ...

    FWIW. Granted it's been awhile and I'm not the best at keeping up with the goings on here but the last I heard, Mike Dessin's improvement was based on getting IV's of something ? valuing over $10,000 ... and his doc wasn't willing to discuss it ... is he saying it was from mold ?

    TC ... X
     
  10. slayadragon

    slayadragon Senior Member

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    In December 2007, Mike Dessin and Erik Johnson exchanged some e-mails. Mike said that he knew that he had a horrible toxic mold problem in his house. Erik told him that he should get to as clear of a location as possible and get rid of all of his stuff from the old house, since even tiny bits of mold poison could be enough to keep CFSers wholly sick.

    Mike moved to Ohio and had his dad get rid of all of his old stuff. He kept some items stored in two sealed plastic bins, but nothing else.

    After a bit of time, he started getting neural therapy. This helped him to detox and reset his system. He did other detox and energetic treatments as well.

    He thinks that a variety of different toxins were poisonous to him. I suspect that was true, since I think that was the case for me too.

    But unlike most people who try to pursue detox of toxins, he got really far away from all mold exposures before starting.

    I'd like to talk to more recovered CFSers. If you know anyone who fits into this category, please let me know.

    Best, Lisa
     
  11. slayadragon

    slayadragon Senior Member

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    Erik's notes to Mike. After this, Mike got rid of all his stuff, moved to Ohio, and started neural therapy and other treatments.

    *

    > From: erikmoldwarrior
    > To: mikedessin
    > Subject: RE: Stan Dessin from the group
    > Date: Sun, 2 Dec 2007 08:38:15 -0800
    >
    > 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
    >

    From: erikmoldwarrior
    To: mikedessin
    Subject: RE: mold is a mothafuckah
    Date: Mon, 24 Dec 2007 09:19:55 -0800

    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 persons 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 mothafu**ah.
    -Erik
     
  12. floydguy

    floydguy Senior Member

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    The problem with these tests is that many (most?) people with a neuro/immune issue have abnormal test results with the above biomarkers. Even Lyme docs are now using C4a as an indicator for Lyme infection. If you read Dr. Deckoff-Jones blog on treating XMRV she started out using C4a and TGF-Beta as markers for her treatment protocol. These labs may indicate a biotoxin but I don't there is any way to tell if that biotoxin is mold, Lyme or even a virus (XMRV is believed to have neurotoxic properties).
     
  13. slayadragon

    slayadragon Senior Member

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    The question of why Dr. Deckoff-Jones' C4a came down is an interesting one.

    It could be that the virus has neurotoxic properties itself.

    It also could be that the virus somehow causes us to be more reactive to various biotoxins (Lyme, mold, cyanobacteria, whatever), and that the increased C4a is mediated through that.

    For instance, my own reactivity to mold went down a lot after a course of Famvir/Valcyte. Those drugs address herpes family viruses. It seems reasonable to think that an antiretroviral for XMRV might decrease my reactivity further, meaning that I don't have to avoid mold/etc. as strictly.

    I may eventually try it.

    Best, Lisa
     
  14. lono

    lono

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    Re: these abnormal biomarkers. Not everyone here with CFS/ME has these abnormal biomarkers, but a significant subset of us do. Unfortunately at this time we don't know enough to immediately pinpoint the underlying cause, but we do have a plausible theory (to me) of what is going on when these biomarkers (especially MSH, VIP, C4a and TGF-beta1) are abnormal. The affected person's body is stuck in an constant, elevated inflammatory state. Dr. Shoemaker refers to this as a chronic systemic inflammatory response syndrome (CIRS) cycle.

    We don't at this time understand all the things that can cause this (I just saw that a new paper is going to be published in the medical literature showing that a subset of people who have exposure to ciguatera toxins develop CIRS), but I believe it's a very positive advance on finding treatment options (and ultimately a cure) for those CFS/ME folks like me who exhibit the chronic systemic inflammatory response syndrome (CIRS) state.
     
  15. sarindipity

    sarindipity

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    Hi, I am new to this site and new to blogs and such so forgive my ignorance. I am desperatly seeking insight into my health problems due to long term toxic mold exposure. I am thrity years old and prior to the mold was extreemly healthy. I eat mostly organic and drank lots of water etc. I currently have asthma that controlls my life. After throughing away all of my possesions or at least as many as possible, I am still triggered by different things, I guess even the outside air when mold spore levels are high. I have become a refugee moving every two moths from place to place and have spent time sleeping in a van until I unknowingly contaminated it with something moldy. I have developed food allergies to many things but the allergies to certain things seems to come and go, while other things can leave me in horrible pain if I eat even a tiny bite. When I am around any mold I get instantly dizzy to the point where I can't walk in a striaght line. When I am wawy from the mold I am fine.

    The asthma is what frightens me. I have spent many nights drving to the hospital panicked because I had spent too many hours trying to breath that I was almost turning blue. I eventually get a breath while being outside for hours and then deciede not to go to the hospital because I can't afford it and all they will do is put me on an inhaler which I won't be able to purchase and is bad for me anyways. You all seem to be the experts. I have read many of your stories and I will continue to read your posts to educate myself about this new lifestyle I have unwillingly aquired! The winter is comming and I can't camp out. I had a safe haven last year which was my parent's storage space. The walls are aluminum andthere is no bathroom in it thus no water source. It was great, I was breathing like there was nothing wrong all winter. There were two problems, one the landlords were on to me and they don't want me living there and two this summer my parents, whose house had the mold, put all of thier moldy stuff in there to store and that has ruined the place for me. What can I do? I either have to recover my health or find a asafe place for the winter. Any suggestions on either option would be very welcomed.

    Thank you,
    Sarai
     
  16. slayadragon

    slayadragon Senior Member

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    Hi Sarai,

    Man, this is not fun, is it?

    Lots better than having out-and-out CFS and lying in bed in screaming agony all the time, which is where I was before I started avoidance. But still not fun.

    Everything I know about the practicalities of mold avoidance, I learned from Erik Johnson. He's spent the past 12 years recovered from extremely severe CFS as a result of just avoidance, and I've yet to go wrong by following his advice.

    (Which is not to say that it's easy.)

    If you or anyone else is interested, I would be happy to send you a collection of his writings. In it is a very thorough information about the tactics of mold avoidance, as well as some interesting recollections about the Incline Village epidemic in the mid 1980s (which led to the acceptance of the illness under the name "Chronic Fatigue Syndrome" by the CDC).

    Please let me know your e-mail address and I will send it to you.

    Best, Lisa (slayadragon at ya-hoo)
     
  17. soulfeast

    soulfeast Senior Member

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    Biotoxin illness can cause gluten sensitivity. It can also "cause" chronic candida.

    I am one who has had multiple exposures over time ending with recent stachy in master bathroom. I lived in Ann Arbor for about 4 years. Had no idea of the cyano and it would ont have mattered.. I didnt ralize it could be a problem. I didnt develop CFS but I had chronic bronchitis when I was there and a few years later was pregant with my first child and started my slow decent. Townhouse next to use, water damage and woman left it cold.. had no clue there could be mold there which there probably was given she left the place entirely. Tick bites, spider bites, and I am not sure if I didnt have exposure to red tide in 2007 when a bloom had made it all the way north to Delaware.. we were at Cape Hattaras at the time kayaking. When we came back, I noticed my symptoms shifted. I had what felt like swelling at bottom of feet up into calves. Something in that water effected me. I am moving after a remediation but to a humid area with a lake. No sign of a cyano problem... hope its good enough for now. I am testing the shoemaker labs.. some again.. did some 3 years ago and all positive for biotoxin illness. I also ahve the multisuseptable gene and low msh gene. I am testing for the retrovirus as well.

    My sister was very sick for years (I think about a decade, progressively to several really bad years).. she lived in a humid basement when she was her sickest. She is better now.. recovered is a relative term because she is happy and grateful to be able to live her life seemingly well enough (she has some digestive tract issues, thyriod issues and some left over narcolepsy that is well controlled and dysautonomia is NOTHINg like it was.. no post exertional malaise no BP swings like crazy). She also had NDE that did create a major shift for her. But with my HLA type and her history of illness, assuming she may have it as well, and the fact she got better once she was out of the basement.. not that she got sick in it.. makes me think this is a factor and a major one.

    I also think we most likely had several biotoxin exposures growing up and know we did have pesticide poisoning as well.

    My sister never worked on detox in any extensive way (did colon cleanses, took some herbs), never addressed methylation. I dont even know if she takes supplements at all. She was very sick. Viral markers, extreme dysautonomia, extreme narcolepsy, loss use of a leg, sick. She seemingly can go anywhere but she does have flares with her heart which she says is dysautonomia flaring. She doesnt focus on it or talk about it much. I consider her recovered because her symptoms are ok with her and she seems to be able to live a full enough busy life including world travel. I will find out more when I move closer to her. She is living near the house I will be relocating to.. same town.. she lves on the lake. So hopefully thats a good sign about the lake.

     
  18. sarindipity

    sarindipity

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    Hi Lisa,
    Thank you for the response. No, it's not fun, it SUCKS! I used to think being the victum of a natural disater was the worst thing that could happen to you. But with mold you loose your health as well as all of your possesions and essentially become permanetly homeless. I would adore any tips on avoidance. My e-mail address is sarindipity2009@gmail.com. Avoidance is tough for me because I still have a few things that were exposed to mold for five years. One example is my car that I transported moldy stuff in and even had some black mold growing in the carpet of the car but it's my car, I can't afford to get rid of it. I have no other choice. My computer and a few other things are essential to me. It seems that your choices are to slowly kill yourself with mold or quickly kill yourself with no where to live or work. I'm thinking about going to live with Bear Grills and become a savage!
     
  19. bakercape

    bakercape Senior Member

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    I don't think it is appropriate

    To share other posters health information . They may have shared it with you but that does not mean it should be shared to the whole forum. There may be some people who also know who this posters identity is and you have in essence then broken HIPPA regulations( ethics) in sharing personal health information.
    Did she give you permission to use her handle and tell people her personal health story?
     
  20. slayadragon

    slayadragon Senior Member

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    Yes, she gave me permission.

    Best, Lisa
     

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