Has anyone ever looked into chronic Neurotoxins?

Discussion in 'Fibromyalgia Main Forum' started by tkearn5000, Aug 25, 2008.

  1. tkearn5000

    tkearn5000 Member

    I jusd took a VCS test, and it came back positive. I was wondering if anyone has experience being treated for this?
  2. tkearn5000

    tkearn5000 Member

    It stands for Visual Contrast Sensitivity Test.
    Here Is a link to the web site on wich I took the test. It explains in much better detail than I can.

  3. hopeful4

    hopeful4 New Member

    I tested positive, too. I was treated for the neurotoxins with cholestyramine. It binds with them and helps to flush them out. It did improve my brain fog and cognition.

    My doctor suggested that I take the VCS test. I went to her with a diagnosis of CFS/FM, but she ended up diagnosing me with lyme disease, which was causing the neurotoxins. Have you looked into the possibility that you may have lyme disease?

    Best wishes,
  4. victoria

    victoria New Member

    As long as your results were positive, I'd likely try the cholestyramine. A doctor friend just told us that he has a neurologist friend who is using cholestyramine with pts who come up negative on the VCS test. Many of these pts are those who have lyme, but not all.

    My son passed, even tho he does have lyme.

    So did I, despite whatever I have (likely lyme or other tickborn infection).

    My husband flunked, even tho he's the healthiest of us, altho he has weird symptoms like atypical bell's palsy and brain fog (whether or not due to lyme or other tick infection or HHV, we don't know cuz he won't get tested for any of them...). I don't know if he's going to try it or not, tho he did get the cholestyramine.

    Any/everything's worth a try for any amount of improvement, imho.

    let us know if you try it and what happens?

    all the best,

  5. Slayadragon

    Slayadragon New Member

    Neurotoxins can result from chronic lyme, poison mold exposure or a few other things.

    For some reason, the mycotoxins (mold poison) seem to be glossed over by a lot of people who take the test.

    This is a little odd, since the person responsible for the development of the VCS (Dr. Ritchie Shoemaker) has focused to a great extent on mold.

    His books are "Mold Warriors" and "Desperation Medicine."

    This may be because LLMD's often suggest the test.

    The LLMD's seem not to focus enough on the devastation that mycotoxins can cause.

    Hopefully this will change soon.

    Meanwhile, those who test positive on the VCS should look into poison mold as well as other toxins.

    P.S. If you are living or working in a place that has a big poison mold problem, taking cholestyramine is not appropriate. You need to remove yourself from the poisoned location first.[This Message was Edited on 08/25/2008]
  6. Forebearance

    Forebearance Member


    I took the VCS test last winter, and the result was that I was 99.99% likely to have neurotoxin poisoning.

    So then I tried to figure out which kind of neurotoxins could be in me. I took the HLA-DR blood test, and the results showed that I have the genotype that is unable to detoxify mycotoxins.

    So that was a major clue.

    At the same time, I decided to have an old stain on my living room carpet tested. I thought it had dried up years ago after a water leak. I was surprised to find out that it was a live, active toxic mold infestation.

    I decided to move, leave all my possessions behind (some in storage) and start over with nothing. I have been taking soluble fiber instead of cholestyramine, because I feel that the csm would be too strong for me.

    My doctor approves of my treatment. We are planning on doing another round of Dr. Shoemaker's recommended blood tests in October, to see if there are signs of progress.

    But I know already that I am getting better. I have more energy and stamina, am getting thinner, and feel less pain throughout my body.

    It has been a challenging road to follow, but it has been totally worth it.

    I have a classic case of CFS, with only one complication (hypothyroidism). If you want to read all the details, tk, you can check out my journal type thread.

    Best wishes! And please let us know what you decide to try.

  7. Forebearance

    Forebearance Member

    P.S. TK, if you decide to try cholestyramine, be sure to eat lots of healthy fats.

    It can really de-grease you.

    Something a little less strong that does the same thing is phytosterols.
    Something even milder is soluble fiber.

    I tried phytosterols, in the form of Promise Activ Supershots. I bought some at the grocery store and drank about a third of one.

    It worked wonderfully. My arms and legs felt so light and pain-free. It felt like the opposite of CFS. I knew that this was the right direction for me.

    But it also seriously de-greased me, so I went for something milder. But then I'm really sensitive to supplements and meds.

  8. victoria

    victoria New Member

    I remember when I first heard about the VCS test that the computer one wasn't as good as one given by a doctor. I believe it was because of the variability of monitors? Does anyone know if that's true or not?

    Re mold toxins... I agree. But I still find it weird that my DH totally completely flunked it while neither my son or I did. Maybe it has to do with genetic susceptibility, despite lyme or other infections?

    It just seems like it gets harder and harder to figure things out when you get such disparity in one family like ours, let alone combined with everyone else's responses and results.

  9. Forebearance

    Forebearance Member

    Hey, Victoria!

    I wonder if maybe neurotoxins affect you and your son and your husband in different ways. The reason the test works is because neurotoxins decrease blood flow to the capillaries behind the eyes. If neurotoxins don't do that to you, then I guess your ability to see contrast wouldn't be affected.

    Or could you and your husband be affected by different kinds of neurotoxins?

    What I did when I took the VCS test was, I set up everything to be the best possible view for me. The best light, the best distance, etc. So if there was going to be any error, it would be in my favor. And I still got the result of definitely having neurotoxins.

  10. Slayadragon

    Slayadragon New Member

    The test is set so that a lot of people who have neurotoxin problems pass.

    The goal is to make sure that when the test says someone is positive, they actually are positive.

    I think the likelihood for the latter is something like 99.5%.

    (This is according to Shoemaker, and so one has to decide how much faith they have in his work when considering how much weight to put into the test. He is hoping to get some peer-reviewed journal articles published soon, and I'm looking forward to reading them.)

    I hate going around making diagnoses of people, but hopefully you will forgive me if I offer a hypothesis.

    Shoemaker says very clearly that if more than one person in a household is ill with mysterious complaints, mycotoxins should be considered.

    In your case, it seems clear that both you and your son have lyme.

    Perhaps your husband does not have the susceptibility for lyme or has not been exposed.

    If indeed you did have a mycotoxin problem, then he might have mild symptoms such as the ones you describe.

    And you and your son might have your lyme problems exacerbated by the mycotoxins, thus presenting relatively severe symptoms.

    Based on what I've been able to gather of Shoemaker, it's the sort of logic he would follow.

    That doesn't mean it's what's really happening, of course.

    Just a thought.

    Best, Lisa
  11. victoria

    victoria New Member

    It's all deductive reasoning plus some shots in the dark! But that's why it's still considered an art to a large degree - clinical diagnosing, that is.

    Apparently our friend's neurologist friend has had some very good successes using cholestyramine and Shoemaker's protocol on his neuro lyme pts... he works at one of the teaching hospitals, so I'd guess he would know what he's doing. To me it's worth a shot anyway if nothing else has worked, and may try it when I'm done with the MP finally. And hoping my son will give it a try, but now he's come up with heavy metals and is chelating......... etc...... so all in good time.

    all the best,

  12. deliarose

    deliarose New Member

    Wot a great pic?
    What part of Mexico did u settle in?