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Biotoxin and Mold Illness Testing

Discussion in 'Addressing Biotoxin, Chemical & Food Sensitivities' started by TheMoonIsBlue, Nov 12, 2010.

  1. TheMoonIsBlue

    TheMoonIsBlue Senior Member

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    I see there is already a post about this subject that I browsed but I'm too exhausted to read all of the posts so I hope you all don't mind that I started new thread.

    I've been trying to read about Biotoxins/Mold Illness and Dr. Ritchie Shoemaker, and my question is, how does one go about getting tested for this without having to go visit Dr. Shoemaker in person?

    And, what doctors are prescribing Cholestyramine? Anyone but Shoemaker?
  2. slayadragon

    slayadragon Senior Member

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    twitpic.com/photos/SlayaDragon
    Hi Blue,

    The following are just my opinions.

    A high percentage of ME/CFS patients report that their illness began as a result of a toxic mold exposure. Considering that most people who are exposed to toxic mold don't know it (I lived in a house with that problem for 12 years before I found out), the fact that so many people with this disease are aware of their exposures says something.

    No one gets better from ME/CFS just from moving out of a moldy residence. By that time, the system is primed to respond to such tiny amounts of mold toxin that it's unlikely they will get free by accident.

    Most people bring their contaminated stuff along. A high percentage of buildings are not "good enough" for people to get clear. And biotoxins in the outside air can be the biggest problem of all.

    A lot of people (myself included) start to respond to mold long before they get full-fledged ME/CFS. It's possible that those precursor signs may be caused by something else too.

    Whether toxic mold exposure is necessary to get ME/CFS, I don't know. (Clearly it's not sufficient, since other factors -- genetic, pathogen, other toxins -- also may be necessary to get it.) An awfully lot of people do have it, on the front end. And once people have ME/CFS, an awfully lot of them are hyperreactive to small amounts of the stuff.

    We need studies to find out more.

    If you look on www.biotoxins.info, you can get the lab sheet that Shoemaker uses. It goes through Lab Corp. (A couple of the tests are supposed to go to National Jewish in Denver, but Lab Corp often messes this part up.) Many of us have had doctors other than Shoemaker order the tests, but it often has taken some convincing.

    Similarly, many people have gotten doctors to order csm. This is known to remove various toxins (not just mold toxin) from the body, so some doctors are willing to prescribe it even if they know little about mold.

    I've been doing interviews with people who have recovered from severe, long-time ME/CFS. (There are very few of us out there.) There's a post about that somewhere on this board. Basically, the people who have recovered 1) are living in buildings that are excellent with regard to toxic mold (or in other residences that are excellent), 2) are living in places with at least decent outside air, 3) either got rid of all their contaminated belongings or waited five years after moving to a good residence for them to calm down. Most of them know that they are reactive to toxic mold and stay out of bad buildings.

    Detox, antivirals and antibiotics seem to decrease mold reactivity. However, it seems to be impossible to pursue any of these effectively if the environment isn't really good. They all take a long time too (3-5 years, depending on the degree of exposure/illness) to really kick in.

    Again, these are just my beliefs. Research needs to be done to see if they're correct.

    Best, Lisa
  3. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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    Concord, NH
  4. slayadragon

    slayadragon Senior Member

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    If you take a look at the other biotoxins thread in this section, you can read more about lab tests and doctors.

    http://www.forums.aboutmecfs.org/showthread.php?7069-Biotoxin-Mold-Illness

    There's also another thread about mold here:

    http://www.forums.aboutmecfs.org/sh...l-Points-quot-Approach-to-Address-CFS-Viruses

    The tests that most people get include:

    HLA DR (Genotype test)
    C4a
    C3a
    MMP9
    VIP
    MSH
    VEGF
    Leptin
    ADH

    I think when I got this panel done (maybe with a couple of other tests too), it would have been about $1000 without insurance.

    I went to a doctor who treated CFS patients and convinced him to order the tests. It's a bit of a challenge to get doctors to order these tests, but some will do it.

    Best, Lisa
  5. jenbooks

    jenbooks Guest

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    Another approach is simply to listen to your body. Treat the person, not the tests. What is the purpose of the tests, not sure, unless you have a lot of $$ and are curious.

    You probably went from a very toxic mold place to a moderately or less toxic mold place. Toxic mold abounds in buildings. Very few homes are without mold problems imo. Construction practices are very shoddy and ignorant. Don't ignore other toxins as well, indoor toxins from noxious carpet, particle board, formaldehyde, plywood, vocs (for instance, a recent study of toddlers found 2-4 times the rate of asthma and eczema in toddlers whose rooms had been painted with regular latex paint), outdoor pollution etc. It's a pandora's box when you open it and realize what the world is really like. Mold is a big baddie but not the only one. Also, bacterial vocs are just as common in water damaged homes.
  6. TheMoonIsBlue

    TheMoonIsBlue Senior Member

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    P.S. Does all the powdered Cholestyramine contain aspartame, or another artifical sweetener?
  7. citybug

    citybug Senior Member

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    Lyme literate docs know about CSM and will prescribe.

    I don't know of any mold exposure for myself. I tried to do some of the Shoemaker tests, but have low blood volume and money. I thought there was a single blood test somewhere on the long thread, but I couldn't tell where you get it. I took csm for a while but it kept making me vomit and have trouble eating. I didn't try the compounded artificial free kind. I notice the smell of mold sometimes outside, but don't notice symptoms. I think it is good to avoid it. Is there any particular test that is somewhat definitive?
  8. silicon

    silicon Senior Member

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    It is apparently possible to get cholestyramine (CSM) without sugar at a compounding pharmacy, such as Hopkington Drug in MAI think they sweeten with stevia instead (I dont know if you can get it plain). You still need a prescription, and its more expensive than regular CSM.

    http://www.rxandhealth.com/

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