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Detection of Mycotoxins in Patients with CFS

Discussion in 'Latest ME/CFS Research' started by slayadragon, Apr 11, 2013.

  1. Forebearance

    Forebearance Senior Member

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    Oh my gosh, Tristen, you poor kid. You must be really poisoned.

    I think the theory behind these tests is that neurotoxins affect microcirculation, which affects our eyes' ability to see contrast. But the visual tests could be an indication of any kind of neurotoxins. For example, people with Lyme infections or other tick borne infections have all those bacteria acting like neurotoxin factories inside them. So it could help to get the HLA-DR genetic test, which can be a clue pointing you toward which neurotoxins are getting you.

    The online VCS test was one of the first things I did after reading "Mold Warriors". Coming out positive for neurotoxins on it encouraged me to do the blood tests and to send a sample of my carpet fibers to Mouldworks. A year and a half later I did the VCS test in a doctor's office with cards, and the results were very similar to the online test.
     
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  2. Tristen

    Tristen Senior Member

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    Thanks FB, I did just today receive copies of the biotoxin illness lab testing which includes the HLA-DR and others. They are not as easy to interpret since the lab (Labcorp) does not provide the reference ranges that I can see. But they do all appear abnormal. I expect to hear from my GP soon on this.

    My visual problems are one of the first symptoms to change with fluctuations in illness. Sometimes getting even hard to see well enough to drive.
     
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  3. slayadragon

    slayadragon Senior Member

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    twitpic.com/photos/SlayaDragon
    Late in my illness, I was at the point where my vision was so bad that I was unable to read unless I was in bright sunlight. I could see hardly any of the lines on Shoemaker's test. Looking back, that was really scary since my biggest fear always was that I was going to go blind. But I was so zonked at the time that the situation barely made an impact.

    A couple of months after moving out of the moldy house and putting aside all my contaminated stuff (but not doing anything more "extreme"), I actually passed the VCS. I wasn't anywhere near well, but at least I could see! So this is a reversible symptom.

    I suggest that you use Shoemaker's reference ranges.

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

    Tristen Senior Member

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    Thanks Lisa, I didn't realize he had the lab interpretation on the site. Well, maybe it's not as bad as I thought. But I'm still not understanding the HLA labs very well. Would you take a look for me.

    My DRB1 result -- DRB1*04 HTWY.

    The DRB3,4,&5 just have a hyphen (-) in the result columne (ex. DRB3*-), no numbers.

    DQB1 Allele 1 result shows -- DQB1 *03:UZMD.


    The TGFb1 is high at 5160 with reference ranges 344-2382

    The MSH is low at <8 with reference ranges 0-40

    C4a is high normal at 2549 with reference ranges <2831

    VEGF is low at <31 with reference ranges 31-86

    AVG low normal at 1.4 with reference ranges 1.0-13.3

    MMP-9 is high 352 with reference ranges 85-332

    VIP is low at <8 with reference ranges 23-63

    My Cortisol was high which is bizarre since it's usually low.

    Any interpretation is appreciated.

    T
     
  5. slayadragon

    slayadragon Senior Member

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    twitpic.com/photos/SlayaDragon

    Again, the chart for the genotypes as well as the reference ranges is here:

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

    The "Rosetta Stone" for translating the genotypes is here:

    http://www.patsullivan.com/files/hla-test-results.pdf

    The only genotype that has DRB1=4 and DQ=3 is the Multisuscptible one: 4-3-53.

    What you are saying does not suggest that the DRB4 (which would translate to 53) has a notation in it. So I'm not sure what to say about that.

    Also, it sounds like you only have the information for one gene listed. I have heard before that if people have two of the same gene, Lab Corp just lists it once (which would give you two multisusceptible genes). But I would want to verify it with the lab.

    Your test scores suggest that TGF-b1, MSH, VEGF and VIP are are very abnormal, in a way that Shoemaker says is consistent with mold illness.

    Generally, mold illness and CFS tend to both be associated with "reversed cortisol" -- low levels early in the day and high levels at night. What time of day did you get the test done?

    MMP9 and C4a (measures of active inflammation/exposure) are only moderately high. However, I have seen people with severe mold illness living in bad places that at least occasionally do not register super-high on these tests. My impression is that at some points the body decides that all that inflammation is too much and will damp it down for a while before starting it up. (This seems to be why patients can live so long being really sick without dying. The system stays inflamed -- perhaps with the goal of burning up the toxins? -- as long as it can, then stops at the last minute to keep death from coming.)

    I don't know what "AVG" is. Are you sure that's what the name of the test is?

    In general, based on what I am seeing here, I would suggest that your scores are consistent with what I see in most CFS and most mold illness patients.

    Best, Lisa
     
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  6. Tristen

    Tristen Senior Member

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    Thanks for your input Lisa. There are 2 for each listed, but since the result is identical, I only listed one of each (put both below). Yea, it appears to me that not all the genetic info is there. No idea what those with only a hyphen (-) means, but then there are blanks on the interpretation chart as well. Appears to me, that I fall most within the "multisusceptible". Anyhow the DRB1 & DQ would suggest this, as you say. Not sure what notation on the DRB4 your referring to, but I've listed the results below as read on the labs.

    DRB1----*04:HTWY
    DRB1----*04:UZPY
    DRB3----DRB3 * -
    DRB3----DRB3 *-
    DRB4----*01:fvuu
    DRB4----DRB4*-
    DRB5----DRB5*-
    DRB5----DRB5*-
    DQB1 Allele 1----*03
    DQB2 Allele 2----*03




    I did the a.m. cortisol in mid afternoon, lol. The GP had to call the lab for the go ahead to do it that late.....so it is a later day level.

    I did go through some years of being very sick and what felt like much more widespread inflammation. At that time I was so sick that too this day I am very surprised that a human body can live through being that ill. I didn't want to die, but thought that I was surely going to. That level of severity passed after 3-4 years. This experience matches what your saying about the MMP9 & C4a levels changing (I bet they were really high during that severe period). And it matches my experience with disease severity.

    Sorry, AVP, Arginine Vasopressin (Antidiuretic Hormone)

    Best,

    T
     
  7. Dufresne

    Dufresne almost there...

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    Tristen,

    My haplotype is the 17-2-52a and the 1-5 (the same as Lisa’s). I passed the VCS on Shoemaker’s site and my c4a came back as 2500 (normal), yet it appears I have a problem with mold. I haven’t bothered testing the other inflammatory markers yet. I was several days outside of the suspected bad environment when I finally had the blood drawn for the c4a. I wonder how quickly this number can come down, or if it’s as Lisa says, the body might have to take a break once in a while.
     
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  8. Tristen

    Tristen Senior Member

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    I believe she is correct, and I suspect that those levels can change quickly.
     
  9. Skyline

    Skyline Senior Member

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    Hi Tristen,

    Where did you order your tests from? Or did you do it through your doctor? I'm not in the U.S. (in UK) and trying to work out how to get these done.
     
  10. Tristen

    Tristen Senior Member

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    Hey Skyline,

    My doc ordered them, all thru Labcorp. Takes a doc's order.
     
  11. Skyline

    Skyline Senior Member

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  12. MNC

    MNC Senior Member

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    Dr. Andrew Campbell and the effects of mycotoxins on human body.

     
  13. sianrecovery

    sianrecovery Senior Member

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    Yes, those tests are a real bugger to interpret. I tested positive for the multi-susceptible HLA gene Tristen - Lisa kindly helped me make the interpretation, as did Scott Forsgreen. Don't despair - there is always a way forward - and people tend to treat that genotype as if its a destiny, which I don't think it is - just more useful information.

    Big hug!
     
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  14. Skyline

    Skyline Senior Member

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  15. Skyline

    Skyline Senior Member

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    I'm looking for a doctor who could work with an international patient (outside U.S.) with Shoemaker's tests. If anyone has any recommendations or ideas of leads I could try let me know. I've contacted the two certified doctors from Shoemaker's site already.

    Does anyone ever get the urge to study a medical degree to help get past bureaucracy? I'm very tempted...
     
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  16. MNC

    MNC Senior Member

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  17. Xandoff

    Xandoff Michael

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    Maybe you could edit it and put a SPOILER ALERT that says QUACK DOCTOR!
     
  18. Tristen

    Tristen Senior Member

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    Hey Sian,

    I'm still not sure I'm interpreting the HLA stuff correctly. So you showed multisuseptability for biotoxin illness? Does mine appear to you to be saying the same? Did you do any Tx for this?

    hugsss back at ya
     
  19. searcher

    searcher

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    I read the document and it appears he primarily lost his license because he is treating people under the assumption that toxic mold can cause symptoms. One of the big complaints was that he ordered a lot of tests which were excessive because "No scientific literature supports a causal connection between mold exposure and the neurological diseases Campbell diagnosed." I don't know anything about the doctor but it seems like he lost his license because he is attempting to treat a potential root cause of fibro/CFS/similar illnesses instead of only giving palliative drugs. There were complaints about the cost of his treatment, but from my experience IV treatments and tests are really expensive so the main issue seems to be him treating people based on the toxic mold theory.

    It's a tough issue-- I can see why insurance companies don't want to pay for unproven therapies, but we obviously want people to try to treat a potential root cause. I am surprised that more CFS doctors don't get in trouble-- since there are no FDA-approved therapies aren't they all using unproven therapies, mostly based on the theory that viruses underlie our range of symptoms? I say this as someone who is trying therapies based on the potential impact of mold exposures and chronic viral infections.
     
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  20. Skyline

    Skyline Senior Member

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    Yes, it's a little unclear, and it could be the case that he was persecuted for going against the grain. That probably had something to do with it. I've seen other doctors like Sarah Myhill get into trouble for going against the grain where there is no basis for it.

    However if you look at the tests he was ordering, it looks a little bit strange. He was ordering SPECT scans, which a lot of doctors in functional medecine would actually avoid due to radiation implications - also as I understand it that is not relevant to neuropathy diagnosis. I've had neuropathy... so know a little about it, but I could be wrong.

    Shoemaker's science is very specific and there doesn't appear to be anything questionable - better to stick with his material IMHO.
     

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