Questran/Cholestyramine Article

Discussion in 'Fibromyalgia Main Forum' started by MattyD, Jan 25, 2009.

  1. MattyD

    MattyD New Member

    "Dr. Paul Cheney on "Chronic Neurotoxin" Protocol for Chronic Fatigue Syndrome: Questran/Cholestryamine by Carol Sieverling." There was apparently an article on discussing the use of the drug Questran/Cholestryamine for CFS that discussed the problem that commercial preparations of the drug contain sugar or aspartame, food dyes, preservatives, artificial flavors and citrus, many of which are antagonistic to sensitive persons. The article also mentions the possibility of getting the drug in a pure form (minus the additives). Anybody have any experience getting the drug in the pure form? -- Matt

    Article abstract:

    Cholestryamine, (Questran),"Dr. Paul Cheney on "Chronic Neurotoxin" Protocol for Chronic Fatigue Syndrome: Questran/Cholestryamine by Carol Sieverling,, 02-06-2002. Author's Note: The following is based on notes taken during a recent conversation with Dr. Cheney. He has not edited or reviewed this information. Reprinted with permission of Carol Sieverling. 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 (, 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. 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 Alzheimer's, 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 lower doses. "Start low and build slowly," is what he said. 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 Message was Edited on 01/25/2009]
  2. ulala

    ulala New Member

    Hoptkington Pharmacy awhile ago that was the pure form. It was REALLY hard to take. I don't think I ever finished it. Since then I have ordered the form with aspartame. It's so much easier to take. The pure form is like drinking chalk. Hope this helps.

    Kind regards!
  3. MattyD

    MattyD New Member

    Ulala, Thanks!! I was able to use Google to find Hopkinton Drug Inc, 52 Main St, Hopkinton, MA 01748, (508) 435-4441. It's a compounding pharmacy. I had forgotten all about the whole idea of compounding pharmacies. They will mail the prescription (I'm in Wisconsin, they're in Massachusetts). If I do a little looking I imagine I could find a compounding pharmacy closer.

    I don't want to take either of the normal prepared compounds. Check out this list of "inactive" ingredients:

    "Cholestyramine for Oral Suspension USP contains the following inactive ingredients: acacia, citric acid, D&C Yellow No. 10, FD&C Yellow No. 6, flavor (natural and artificial Orange), polysorbate 80, propylene glycol alginate and sucrose."

    Thanks again.
    [This Message was Edited on 01/25/2009]
  4. ulala

    ulala New Member

    Hopkinton Pharmacy. I thihk I spelled it wrong in my first post. Sorry! I have the Qestan Lite. I can't find a list of the ingredients. The problem for me was that the pure form was so hard to drink that I just didn't use it. I'm curious to see how you'll tolerate it. The Questran Lite is so much easier to drink. I'll have to find the ingredients for the lite. Let me know if you get the pure form. Hopkinton will ship it to you. Thanks for the info!

    Best wishes!
  5. Forebearance

    Forebearance Member

    Hi Matt,

    I guess you got the answer to your question. I have also known someone who got the pure stuff from a compounding pharmacy.

    I think you could add something to it to make it more palatable, if you want. It's not exactly appetizing no matter what you do, though.

    I take the regular Questran, because sugar doesn't bother me and aspartame would. So far the other yucky ingredients haven't bothered me. I don't take a huge amount of it.

    Thanks for pointing out this article in the library here. There is so much good info buried in the library! I'm really glad to know that Dr. Cheney prescribes less Questran than Dr. Shoemaker does. I can vouch that even a little Questran still does something. (at least for me)

    I wonder if Dr. Cheney has read "Mold Warriors", Dr. Shoemaker's more recent book, by now. It's so incredibly good, if you can handle wading through the anecdotes.

    Will you let us know how the Questran goes for you? Thanks a ton. We could use more examples of people's experiences with it, to compare notes with.


    [This Message was Edited on 01/25/2009]
  6. Forebearance

    Forebearance Member

    Cool ideas, grammy27!

    Except, um, as I just wrote on Kelly's thread, we're supposed to be taking Questran on an empty stomach when we're taking it for detox purposes. I'm sure a little fruit juice wouldn't hurt, but taking it with fatty things like coconut or goat's milk will probably cause some of the Questran to bind with the fat in the food instead of with bile.

    At least, that's how I understand it.

    [This Message was Edited on 01/26/2009]
  7. mmacione

    mmacione New Member

    In response to your message.

    I am the Director at Hopkington Drug in Mass. We are a compounding pharmacy that sends Cholestyramine all over the country, including some of the Doctors mentioned. We have Cholestyramine in the pure form that we sweeten with Stevia. Stevia is a natural sweetner that comes from the Stevia plant. It is 200 times sweeter than sugar but with none of the effects. To give you an idea of the sweetness, i use approx. 1/24 of a tea spoon in a 20 ounce iced tea. It doesnt have aspartame or harmful chemicals.
    We have found that our patients tolerate this very well.
    We will be happy to speak with your Doctor regarding this product. We can have your prescription sent out over night in most cases.

    If you have any questions call Michael at: Hopkinton Drug 800-439-4441