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A Little Poisoning Along the Road to ME/CFS
Looking at my symptoms, many of which are far less these days and some are gone, it would be easy to figure that I'd just been dealing with some heavy-duty menopausal issues.
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Using Intuition to Detect Problematic Environments

Discussion in 'Addressing Biotoxin, Chemical & Food Sensitivities' started by slayadragon, Mar 1, 2012.

  1. slayadragon

    slayadragon Senior Member

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    Often people ask what kind of test they should use to measure whether toxic mold is present in an environment.

    Unfortunately, "science" has yet to come up with any really reliable ways to do this. The killer app would be a gadget like a smoke detector, which would detect specific poisonous gases in the air.

    It's my belief that until this is invented, the best tool we have is our intuition. Here, mold avoider Andrea Fabry talks about how she wishes that she had paid more attention to what her own intuition was telling her, rather than purchasing the home that ended up making her whole family sick.

    http://www.moldrecovery.blogspot.com/2012/02/haunted-house-hunt.html
     
  2. Avis

    Avis

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    Hi Lisa,

    I haven't been on this forum before but am trying to connect with those more like us. Have seen your comments on other sites in my google searches and we seem to have some overlap with you (methylation/biotoxin). We are a family of 4 (NoCal, SoCal) w/ decades of gut problems (dysbiosis), allergy, immune issues, heavy metals, all neurotypical, not quite CFS but in that realm and SICK. Discovered a 14 year toxic exposure to 4 kinds of mold in the house (including Stachy). Thought we'd addressed that with an environmental guy (anti-fungals) and house rehab and Patricia Kane's high dose phosphatidylcholine and fatty acids. Later found Yasko and did her protocol for methylation weaknesses w/ great success, initially, for my son, leading to purple bartonella striae all over his back and diagnosis of tick-borne infections. Lyme treatment, however, left him disabled, 3 years now.

    No amount of Yasko interventions produce much of anything now, unlike before, as he has the classic Shoemaker trifecta of hypothalamus damage (low sex hormones, dysregulated cortisol and dysautonomia, and low anti-diuretic hormone.) So Shoemaker now seems to be our only choice. Initially avoided his approach due to cholestyramine seeming to be his main treatment (and we've all had low cholesterol) and his being allopathic . Now Shoemaker seems to have tools to use beyond cholestyramine that my son, at the very least, may need.

    We are waiting for an appt with Shoemaker, doing Yasko, and our usual amount of alternative things. Have a few questions, please: (1) Have you seen him and what did you think--he gets mixed press. (2) We got the HLA-DR genetic testing and son has one haplotype (3 genes from one parent) that is mold susceptible. Other haplotype from other parent is not susceptible. New doc, however, took 2 alleles from one parent and 1 from other parent and said that made a haplotype that is multlisusceptible ( in addition to the mold susceptible one). Kind of a mix and match approach to the alleles vs 2 distinct haplotypes coming in. Do you know how they are scored? Finally, (3) Have you removed heavy metals? We've not chelated since he was 9 (DMSA) and he's 22. Have been trying to do it Yasko's way (no DMSA/DMPS because of the CBS+- A360A) but the metal excretinon only worked before the antibiotic treatment. (3) Have you done mold allergy desensitization sublingual drops to calm down the reaction to mold? We have not. Yet I think about his treatment for lyme and all of the antibiotics and also a high dose treatment with a mushroom immune stimulator that I believe just added mroe mycotoxins (or mold sensitivity) to him. Wonder if that's what we should do, too.

    We did so well with all of our alternative stuff and methylation treatment, despite 14 years of mold exposure, but have been kicked way, way down with this last 3 years post mushroom/antibiotic treatment. Was happy to find someone who'd traveled similar paths as we have. Am finally moving away from my exclusive focus on Yasko's chatroom--I was blown away by that information that very much addressed our issues, despite no one in the family being on the spectrum. However, I'm just realizing there are groups of people maybe more like us, though we're not exactly CFS or FM.--we're definitely biotoxin illness people. Will now read everything I can on this part of the Phoenix Rising site to bring myself up to speed. I don't understand which to press: "post quick reply" or "go advanced" or "+reply to thread", but will just hit the first.

    Thank you so much

    Avis
     
  3. slayadragon

    slayadragon Senior Member

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    Hi Avis,

    Unfortunately, I've yet to find anyone with ME/CFS who has benefited from Shoemaker's approach or from Shoemaker's personal instructions, without taking this further. I think he is a brilliant man and am very grateful to him for the work that he's done, and I correspond with him on occasion, but that doesn't mean that his treatment suggestions are enough to help us. We're a very tough crowd!

    The people with ME/CFS who have done well have gotten to a lower level of biotoxin exposure than Shoemaker advises. This certainly is true for those who consider themselves to be "Moldies." Based on everything that I know, I believe that those who have gotten well using other techniques have been able to benefit from them because they've inadvertently gotten to a comparatively low level of exposure too. Hopefully someone will study this.

    Exposures come in three sorts: a) biotoxins growing in structures; b) biotoxins in the outdoor environment; c) cross-contamination of possessions. All of these are equally important. If people do not take measures to address all three of them, they will sandbag themselves in terms of their progress.

    I believe very strongly that everyone with ME/CFS has a hyperreactivity to these toxins, being made sick by even tiny amounts. Thus, ordinary avoidance (not living in moldy buildings) isn't sufficient to get people on the road to wellness. The more that people can reduce their exposure, the more they will be able to make progress (including feeling better in the short run and improving their core health by using other treatments).

    I agree with you that the methylation approach is a key part of healing. I actually think that most of the treatments discussed on this board are appropriate for this disease. The problem is not that they don't work, but that they work so inconsistently. The reason for this, I believe, is that ME/CFS patients vary in terms of the exposure that they're getting.

    There's not a tremendous amount of mold info on this board yet. My hope in suggesting that "Biotoxin, Chemical and Food Sensitivities" category be added to the board was that more mold/biotoxin information would be shared here over time, but thus far it's just been two weeks!

    A thread on which I spent several months sharing information is here. (I've reorganized this along with some of my other writings into a pdf document; please send me your email address if you would like for me to send it to you.)

    http://forums.phoenixrising.me/showthread.php?4627-Mold-Dr-Cheney-and-ME-CFS

    Another good place for you to look is at the Locations Effect board, which I designed to serve as an information repository.

    http://locationseffect.proboards.com/index.cgi?

    In addition to reports on various locations, there is some basic mold information. You might start with the thread "Mold Avoidance and Treatment Resources" in this section:

    http://locationseffect.proboards.com/index.cgi?board=logistics

    If you like, you can read about me here. My bio is a pdf attached to the second post.

    http://locationseffect.proboards.com/index.cgi?board=bios&action=display&thread=37&page=1

    You (or others) also are welcome to friend me on Facebook.

    http://www.facebook.com/profile.php?id=1603672188

    If you want to go further with this approach, there are other resources that I can provide you. Please feel free to keep in touch.

    Best,

    Lisa

    lisapetrison at yahoo
     
  4. Avis

    Avis

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    Hi Lisa,

    Thank you so much for your prompt reply. Yes, I would appreciate it if you would send me the info you've reorganized (e-mail=loreli28@hotmail.com). I understand one of the key things that you have done to become well. So, that is thought provoking. I will follow all of the links, as well. Many thanks and good for you in getting as well as you are.

    Avis
     

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