neurotoxins and fibro tx??

Discussion in 'Fibromyalgia Main Forum' started by jamapam, Apr 17, 2003.

  1. jamapam

    jamapam New Member

    Hi all, I am new here and just read the article about Dr Shoemaker's treatment for neurotoxins. I am thinking about seeing his only referred doc in Michigan, any thoughts or experiences would be greatly appreciated... Thanks so much and have a great day, Pam
  2. jamapam

    jamapam New Member

    BUMP AND THANKS
  3. layinglow

    layinglow New Member

    Welcome to the board Pam!
    I am assuming you live in Michigan. Have you ever been to Dr. Conley's Fibromyalgia Clinic?

    You might be interested in what Dr. Cheney has to say about Dr. Shoemakers treatment protocol.
    Article Below. Best wishes, LL

    Cheney on "chronic neurotoxin" protocol: Questran/cholestryamine

    Date: 18 january 2002

    (The following is based on notes taken during a recent conversation with Cheney. He has not edited or reviewed this info.)


    Bottom line: Cheney is going to incorporate the test and a modified version of the treatment described below into his practice.

    The book "Desperation Medicine", and the website where it can be ordered (chronicneurotoxins and its a dot com)contain intriguing information about a test and a treatment to detect and remove neurotoxins being generated within our bodies. The toxins end up in the brain (thus "neurotoxins) and other organs of the body. (I summarized the book in a short article for our local support group newsletter - See below after Cheney article.)

    The test, used by the toxicology division of the Environmental Protection Agency, is simple, inexpensive, quick, and non-intrusive - you just look at a card with a series of lines of varying shades of gray and indicate whether they are vertical, left-leaning, or right-leaning. It's the visual equivalent of a hearing test, detecting what frequencies you can and cannot perceive. It's called a VCS test: visual contrast sensitivity test. Sometimes it's also called FACT: functional acuity contrast test.

    Cheney talked at length to the company that makes it, Stereo Optical Co. (1-800-344-9500). The test equipment costs $275. Doctors typically charge about $25 for the test.

    Cheney explained that trouble perceiving mid-range frequencies indicates the sub-cortical/deep brain injury typical of CFS, problems perceiving low frequencies indicate cortical injuries such as altzheimers, and problems perceiving high frequencies indicate injury to the retina or optic nerve. These visual problems are very subtle and not at all apparent apart from the test.

    Cheney found it to be a very intriguing test, has ordered it, and will be incorporating it into the tests given at his clinic.

    The treatment recommended in the book and website is 4 scoops daily of Questran (cholestyramine) on an empty stomach, an old cholesterol drug. It is not actually absorbed - it never enters the system. It stays in the gut, binding and then eliminating fat-soluble toxins that otherwise are reabsorbed and circulate repeatedly throughout the body. (Lyme patients are given pioglitazone/Actos to minimize the terrible herx - this drug makes CFS patients worse.)

    After much investigation and a long conversation with the book's author, Cheney believes that this may be a helpful tool in the treatment of CFIDS.

    However, he will implement the protocol somewhat differently. Cheney feels that, like any aggressive detox agent, it could mobilize too many toxins too quickly. He is going to be using much, much lower doses. Start low and build slowly, is what he said. I think he said that he'd started his first patient out on 1/4 teaspoon at bedtime.

    Another change in the protocol occurred when Cheney learned that Questran contains 1 tsp of pure sugar per scoop. Taking a total of 4 teaspoons of sugar a day on an empty stomach per the original protocol could cause or aggravate gut dysbiosis - overgrowth of harmful bacteria and fungi. Most of us know that sugar feeds the candida and other things many of us have!

    There is a Questran Light, but it contains aspartame. Not a good option. Cheney talked to Bristol Myers, the manufacturer of Questran, and believes that while not widely used or available, it is possible to get raw Questran without sugar or aspartame. Having patients add stevia to it to sweeten it safely was mentioned. (This stuff, even with sugar or aspartame, is a powder that reportedly tastes awful.)

    Another side effect that must be addressed in some patients is that it can cause constipation. But Cheney said that could be safely addressed. I don't remember how, if indeed he even said how.

    Important Note:

    "Lyme patients are given pioglitazone/Actos to minimize the terrible herx - this drug makes CFS patients worse.)"

    Just to clarify, when I made the above statement in a previous post, it refers to the fact that Shoemaker only gives pioglitazone/Actos to his Lyme patients - never to CFS patients.

    Shoemaker told Cheney that he (Shoemaker) learned quickly that pretreating with pioglitazone/Actos did not help his CFS patients and usually made them sicker - just awful, ordinary sicker. Not a helpful, healing crisis / herx kind of temporarily sicker.

    source virtualhometown...and its a com









  4. jamapam

    jamapam New Member

    Dear layinglow, thank you so much for your info. I do live in Mich and have not seen dr Conley. Does he do neurotoxic tx as well? Take good care, Pam