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Tests to Measure Biotoxin/Mold Illness

Discussion in 'Addressing Biotoxin, Chemical & Food Sensitivities' started by slayadragon, Feb 18, 2012.

  1. slayadragon

    slayadragon Senior Member

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    Below is a summary of some different ways to test for biotoxin or mold illness, which I put together.

    I would like to hear people's experiences with these different kinds of tests, or with other tests.

    If someone is uncertain whether mold/biotoxins are a problem for them, what do folks think is the best way for them to go about figuring that out?

    1. One kind of test panel is the one that Dr. Shoemaker has developed. It includes a number of measurements related to inflammation and immune responses. This includes measurements of various cytokines (such as MMP-9 and TGF-beta 1), since that kind of inflammation seems to be related to toxic mold illness. It also includes measurements of various hormones (such as MSH, VIP, cortisol, leptin and ACTH), since those are thought to be affected by the presence of the inflammation and other negative effects brought about by toxic mold. Measurements of complement elevations (C3a and C4a) also are included, since those are thought to be related to current acute toxic mold exposures. VEGF, which is a chemical signal directing growth of new blood vessels, is also part of the panel. The HLA-DR genetic testing, which Dr. Shoemaker says that he has observed to be strongly correlated with toxic mold illness, also is included on the panel.

    These tests still are unfamiliar to most practitioners, but seem to be gaining acceptance in the CFS community. They are described in detail in Dr. Shoemaker's books "Mold Warriors" and "Surviving Mold," and on his website.

    http://www.survivingmold.com/diagnosis/lab-tests

    2. Also on his website, Dr. Shoemaker describes a test that he calls variously the VCS (visual contrast sensitivity) and the BIRS (biotoxin illness risk score). This is an eye test of visual contrast, which he states is a good detector of the presence of neurotoxins of whatever sort (not just biotoxins) in the brain. It can be completed online and serves as an initial screening device.

    My own personal experience and observations suggest that this is a useful screening device, but that it doesn't necessarily do a good job in ruling out mold illness in CFS sufferers. When I was living in my moldy house, I indeed did terribly on the VCS. At that point, my vision has declined to the point that everything looked dim and I could barely see anything to read inside. This was scary!

    During the couple of months after I moved out of my moldy house, my vision improved to the point where I could pass the VCS. I felt a bit better, but was not even close to being well. It took me a lot more avoidance than that to get to the point where I was feeling really good.

    Dr. Shoemaker says although people who aren't suffering from biotoxin illnesses (which also can include things like chronic Lyme, dinoflagellates and brown recluse spider bites) shouldn't fail the test, those people who are having problems sometimes can pass it.

    I certainly think that it's a good idea for CFSers to take the VCS. On its own or in combination with the ERMI, it can provide substantial information on whether people are living or working in really moldy buildings.

    That's important to know, so that the problem can be addressed if so. No one should be living in a sick building. That's especially the case for anyone with an illness that affects the immune system, regardless of whether we think that mold might be a "cause" of that illness.

    However, passing the VCS should not be taken to provide conclusive evidence that mold toxicity is not a factor in an individual's illness. It is only a first step.

    Here is a little bit of information about the test:

    http://www.survivingmold.com/diagnosis/visual-contrast-sensitivity-vcs


    Here is an online version of the test (on another site of Shoemaker's), that can be taken for a fee:

    http://www.chronicneurotoxins.com/


    3. Another kind of test is an allergy test panel. Here we are talking about allergic reactions to toxins, not to their poisonous effects. Still, I have heard of people using them for cases of mold toxicity illness.

    One measure is the IgE tests to different species of mold. These measure allergic reactions, which result in symptoms such as watery eyes, runny nose and asthma.

    This is not useful for the purpose of measuring mold toxicity, because this is not an allergy. In my case, even though I appear to be suffering from the negative effects of toxic mold, I do not have any allergic symptoms of mold at all.

    A second component of this test is the IgG. This apparently measures the extent to which people have been recently exposed to various species of mold.

    As it was explained to me, the rationale for the use of this test is to try to determine the extent to which various molds are present in the person's usual environment. If the IgG to Stachybotrys comes up high, it is thought to mean that the person's home (or other area where s/he spends time) has a Stachybotrys problem.

    This does not mean that the person is being affected by the particular mold, though. Some people appear to be able to get a very large amount of exposure to these molds and not suffer from any apparent ill effects at all.

    Having a low IgG does not mean that the person is not being affected either. Again, it is our contention that for some of us, even small amounts of exposure (apparently triggering complement to go ballistic) are enough to keep us sick.

    The potential usefulness of the IgG is to serve as an environmental test, since the tests that remediators use (air tests, ERMI, tape lists) are so unreliable. I don't have enough data on the accuracy of the IgG for this purpose to say whether it actually provides good information.

    4. Another type of test shows whether various molds, including toxic species such as Aspergillus, have colonized the body. In this case, the molds are serving as pathogens (like a bacteria would). Insofar as the molds continue to produce toxins while living in the body, this would be contributing to any toxicity problem present.

    It's my impression that this sort of test is reliable. However, the colonization of individuals' systems with these pathogens is only one part of the problem. We also are affected by the toxins that we take in just by breathing them in. One toxicologist (Dr. Jack Thrasher) told me recently that these toxins appear to have the ability to go straight up the olfactory nerve and into the brain, totally bypassing the lungs or bloodstream.

    Stachybotrys, which is possibly the most problematic toxic mold for CFS sufferers, very rarely can get any sort of a foothold in the body. Aspergillus does so more frequently, especially in people who are already immune compromised. It tends to cause sinus infections and lung problems. These types of problems often are attributed in CFS sufferers to infections with candida, bacteria (such as chlamydia pnemoniae) or mycoplasma. Considering the idea that they might be related to Aspergillosis or other mold colonization, especially if mold in the home is suspected, may be warranted.

    I actually had a lung problem, with mild-ish pneumonia-like coughing, during the couple of months before I found out about the mold in my house. It went away within a couple of weeks after I moved out. One hypothesis is that immune defects resulting from mold toxicity make Aspergillosis more likely to occur. Of course, other immune problems from CFS also could contribute to its presence.

    5. There also is a panel of tests that measure the presence of various chemicals, including various mycotoxins, in the bloodstream. These tests are used frequently by various environmental specialists, such as Dr. William Rea.

    This kind of test was originally designed to assess the presence of manmade chemicals, as might occur from industrial exposures to solvents or pesticides. They then were extended to measure mycotoxins.

    A company that does this type of test is RealTime Laboratories.

    One issue here is that toxic molds make a whole variety of chemicals. We don't have enough knowledge yet to be able to say for sure which ones are particularly bad.

    Another issue is that the body tends to sequester mold toxins and other chemicals in the fat cells rather than in the bloodstream. The amounts in the blood thus may be misleading.

    I don't have enough information about these tests to gauge their accuracy. From what I've heard, people who have environmental exposures to most chemicals tend to see their blood levels gradually go down if they get away from the environmental exposures and engage in active detox. The levels of the mycotoxins seem more likely to stay stubbornly elevated.

    Here's an article on the measurement of mycotoxins in tissues and body fluids.


    Hooper DG, Bolton VE, Guilford FT, Straus DC. Mycotoxin detection in human samples from patients exposed to environmental molds.Int J Mol Sci. 2009 Apr 1;10(4):1465-75.

    RealTime Laboratories, LLC, 13016 Bee Street #203, Dallas, TX 79234, USA.

    The goal of this study was to determine if selected mycotoxins (trichothecenes, aflatoxins, and ochratoxins) could be extracted and identified in human tissue and body fluids from patients exposed to toxin producing molds in their environment. Human urine and methanol extracted tissues and sputum were examined. Trichothecenes were tested using competitive ELISA techniques. Aflatoxins B1, B2, G1, and G2, and ochratoxin A were tested by using immunoaffinity columns and fluorometry. Test sensitivity and specificity were determined. Levels of detection for the various mycotoxins varied from 0.2 ppb for trichothecenes, 1.0 ppb for aflatoxins, and 2.0 ppb for ochratoxins. Trichothecene levels varied in urine, sputum, and tissue biopsies (lung, liver, brain) from undetectable (<0.2 ppb) to levels up to 18 ppb. Aflatoxin levels from the same types of tissues varied from 1.0 to 5.0 ppb. Ochratoxins isolated in the same type of tissues varied from 2.0 ppb to > 10.0 ppb. Negative control patients had no detectable mycotoxins in their tissues or fluids. These data show that mycotoxins can be detected in body fluids and human tissue from patients exposed to mycotoxin producing molds in the environment, and demonstrate which human tissues or fluids are the most likely to yield positive results.

    http://www.ncbi.nlm.nih.gov/pubmed/19468319'


    6. The test that Dr. Myhill suggests ("you'll have to go on holiday") and that Erik Johnson has long advocated ("the Godforsaken wilderness" sabbatical) discussed above are designed to help individuals determine how much of an impact small amounts of toxic mold are having on them.

    The test needs to be done carefully in order to yield a useful result though. Because CFSers are affected by such small amounts of mold, staying in a bad building, a bad region or amidst bad belongings (or other objects) can make it seem that toxic mold is not a problem even when it actually is.

    If the test is done right though, it provides much more convincing results than any of the lab tests. Only two weeks after moving out of my moldy house and four days after putting aside my belongings from the house, I found that I couldn't go back into close proximity with those items without feeling ill. Washed clothing made my heart beat fast. Putting my hand inside my purse caused a painful burn that lasted for a week. Putting on my heavy coat made me have to stop by the side of the road to repeatedly vomit.

    This is what Dr. Rea calls "unmasking." Interestingly, CFSers talk about it with regard to food allergens all the time---e.g. needing to stop eating wheat in order to figure out that small amounts of it cause a problem. Considering that toxic mold is inherently a "worse" substance for people than is "wheat" (consumed by the majority of the population with only positive results), the idea that the former may be causing problems that are at least as bad as the latter at low levels does not seem that unfathomable of a concept. Just an unfamiliar one.

    Based on what I've seen, practitioners seem to be moving more toward using Dr. Shoemaker's panel of tests (including the VCS) to assess mold illness. For CFSers, the "Godforsaken wilderness" one (perhaps in combination with Dr. Shoemaker's panel) seems to work best, in my observation. The others seem to be more useful for particular situations rather than for the diagnosis and monitoring of mold illness in general.

    Thoughts?
    JBB and cigana like this.
  2. Forebearance

    Forebearance Senior Member

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    I can add one more small test, which is kind of a first step. It was the first thing I tried on myself when I thought the mold growing in my carpet might be affecting my health.

    I bought some phytosterols and took some. They are a gentle toxin binder. I felt better.

    That gave me the motivation to start ordering lab tests.

    Phytosterols work in a similar way to cholestyramine. But they are cheap, non-prescription and available at any health food store. Or even at many grocery stores.
    merylg, Sparrowhawk and slayadragon like this.
  3. Sparrowhawk

    Sparrowhawk Senior Member

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    Forebearance ... Phytosterols, do they also act as a binder for metals as well, or when you say gentle toxin binder are they more for mold / bio toxins ? Thanks.

    I'm trying to find something that would help bind and expell mercury that isn't zeolite, which I reacted badly to.

    On topic of
  4. Sparrowhawk

    Sparrowhawk Senior Member

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    Ack, I just realized I cut myself off on this. On the topic of biotoxins, ironically just discovered mold this week in our laundry room which is...right next to my bedroom. Had the remediation guy out today to look at it. Might explain some things if this is part of what's been going on with me.
  5. concerned_husband

    concerned_husband

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    I know this is an old thread, but my question seems to be most relevant to this post by slayadragon.

    For mold multi-susceptibility I've seen conflicting information for the DRB3 criteria by Dr. Shoemaker:

    http://www.survivingmold.com/diagnosis/lab-tests & http://parkridgemultimed.com/site/wp-content/uploads/2013/07/Mold-Toxicity1.pdf say:
    DRB1: 14; DQ: 5; DRB3: 53B

    Other sources I've found online (http://momsaware.org/images/stories/documents/rosetta_stone_instructions.pdf; ):
    DRB1: 14; DQ: 5; DRB3: 52B**.

    I’m getting the surviving mold book in the mail tomorrow, so I will be able to confirm once I get a physical copy, but I also wonder if Dr. Shoemaker’s website is more up-to-date or if the diagnostic criteria for DRB3 has changed. Does anyone have any insight to this?

    Do both sets are numbers point to being multi-susceptible(DRB3:52B and DRB3:53B)?

    Or is only one set a positive genetic result for susceptibility while the other is not?(because 52 vs 53 is close, although in medical terms it could be night and day, I'm not sure).
  6. slayadragon

    slayadragon Senior Member

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    I tried clicking on the link from momsaware (that you say states 52B) but nothing came up.

    Are you saying that you have a genotype that looks like this?

    DRB1: 14; DQ: 5; DRB3: 52B
  7. searcher

    searcher

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    @slayadragon - I think the semicolon on the end of the link is breaking it; if you click on the link and remove the semicolon in the URL you should get to the right page.
    slayadragon likes this.
  8. concerned_husband

    concerned_husband

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    Sorry for the bad link.

    http://momsaware.org/images/stories/documents/rosetta_stone_instructions.pdf

    My wife's genotype is:
    • DRB1: 14
    • DQ: 5
    • DRB3: 52B
    The surviving mold book states 53B is the HLA for multi-susceptible, although on the very next page in the book Dr. Shoemaker lists all possible HLA DR Haplotypes and there is no 53 anywhere on that page. This leads me to believe that it's a typo? (Even though the book and Shoemaker's website say "53").

    Does that conflict with any information anyone else has?
  9. slayadragon

    slayadragon Senior Member

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    I wrote to Shoemaker through his Members Only subscription service to see if I could get an answer.

    I have in previous correspondence with people that 14-5-52B is multisusceptible. I imagine that I got that from Surviving Mold or Mold Warriors, but I don't have those books available to me at the moment.
  10. concerned_husband

    concerned_husband

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    Thank you! Side question: what has been your experience with that service? Does it get you information that is hard to get answered otherwise? What are response times like?

    I just received my Surviving Mold book yesterday and I discovered 2 things about HLA haplotypes:
    1. 14-5-53B is listed in the table as multi-susceptible
    2. The very next page lists all possible HLA haplotype combinations and there is no "53" on the entire page; that leads me to believe that 53B is a typo that should be 52B.
    I am still trying to confirm this via other sources that list HLA haplotype combinations; when I know more I'll update my post.
  11. slayadragon

    slayadragon Senior Member

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    The Surviving Mold member service does not guarantee that questions will be answered. People who subscribe submit questions, and then Dr. Shoemaker answers the questions that he chooses. His answers are sent out to all subscribers and then compiled in a book.

    I think that this is really informative, in a straightforward way that is different than the Surviving Mold or Mold Warriors books. So yes, I would recommend it.
  12. Forebearance

    Forebearance Senior Member

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    Sorry I haven't checked this thread in a while, Sparrowhawk! I'm sorry to hear about you finding a mold issue in your laundry room. I hope the remediation helped.

    As far as I know, the phytosterols bind to biological neurotoxins, not to metals. But I'm not sure about that. Maybe you'll have to do more research. I know they bind to bile in the intestines, and the bile can carry some biological neurtoxins in it. You could always just try some and see if you feel better. Best wishes with your metal detoxing!

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