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Thread: Cholestyramine

  1. #1
    Senior Member Mistica's Avatar
    Join Date
    Nov 2007

    Default Cholestyramine

    My GP wanted me to test the drug, cholestyramine.
    The purpose was to see if it could bind suspected neurotoxins being released in the gut and if it did, would it reduce my flushing? We are trying to determine how much of a role my gut plays.

    I spent a couple of weeks thinking about it as I was worried about side effects, including constipation. I already have a problem with that. I also worry about triggering other unforeseen problems each time I try something new.

    Cholestyramine is used quite often in those undergoing the Cpn protocol (CAP). I am doing a partial version of this. It is supposed to help reduce secondary porphyria. It seems to help quite a lot of the patients.

    So, a few days ago, I decided to call my pharmacist to discuss the drug, only to find in Australia at least, the regular kind has been discontinued, leaving Questran Lite on the shelves. This contains Aspartame. There is a lot of controversy surrounding this artificial sweetener. For the moment I am reluctant to test it.

    However, I thought I would mention Cholestyramine and the purpose of it's use in those with leaky gut/CFS.
    Someone may consider it worthwhile trying.
    Previous Numerous IPL, ZZ cream. (Nose)
    Supplements: Niacinamide, Vit K2, D3, Moderate Dose Vit C, Iodine, NAC, Taurine, Magnesium. Very low dose B's. Low dose zinc (to correct deficiency).
    Skin Care: Trialling No Cleanser, Niacinamide gel 4%.

    Treating for gut dysbiosis under specialist care. (This is helping).
    GAPS diet foods/no nut breads etc.
    Very small amounts of Fermented Foods.

  2. #2
    Senior Member
    Join Date
    Sep 2010
    Country: United States


    Hmm, another thing that sounds interesting. You are an excellent researcher! Can't blame you for being put off by the aspartame though. I used to practically inhale that stuff (when I was younger I would put about 5 in a cup of coffee) and it is evil stuff. Is there a lot in the Questran?
    Dx July 2010 rosacea type 1 and 2/seb derm plus contact allergies to various substances
    Hashimoto's thyroiditis, fibromyalgia

  3. #3
    Senior Member Mistica's Avatar
    Join Date
    Nov 2007


    I am going to tentatively report that Questran Lite is helping me recover from the most awful deterioration.

    The active ingredient in Questran Lite is Cholestyramine. Unfortunately it also contains phenylalanine, which is a neurotoxin. Why Australia stopped importing regular Questran, in favour of the toxic stuff beats me. Ok, there is a lot of controversy surrounding P, and some people react to it and some people don't, but at the end of the day, I don't feel it is a good thing to be ingesting.

    I ended up taking taking Questran Lite at the urging of my GP. This is why.
    (Sorry for the length).

    For those who don't know my history, I have been undergoing a partial version of the CAP ( Combined antibiotic protocol) for Cpn. Antibiotics used were Azithromycin and Metronizadole. Metronizadole can cause peripheral neuropathy due to toxicity as well as other side effects.

    I also did two courses of Interfase Plus with EDTA. This is designed to destabilise gut biofilms. These can release neurotoxins. The CAP too, can do this. Bacteria release lipolysaccharides which are fat-soluble toxins when killed.
    Fungi release fat soluble toxins as well and both can circulate indefinitely.

    It is the opinion of some doctors/scientists that these recirculating toxins are what prevents recovery in some chronic diseases. Some forms of CFS, Lyme, sick building syndrome. The most well known Doctor in this field is Dr Shoemaker.
    Dr Shoemaker's area of interest is environmental medicine. External molds etc. He does not consider Cpn is a cause of Chronic Fatigue syndrome. Of course, rosacea is never discussed, although a number of patients with the above illnesses, flush.

    Recently other medical specialists, including Dr Stratton attended a conference where ideas were shared. Dr Stratton specialises in eradicating Cpn with mulitple antibiotics. He also employs the use of Cholestyramine to mop up porphyrin toxins.
    The Rheumatologist who advises my GP was also at the conference. He tends to feel candida, ( also a fungi) is releasing toxins which are circulating indefinitely in some patients, whether or not they have additional infections (which also release toxins).
    While he does employ the use of antibiotics, he feels it is necessary to change the terrain so it becomes unfavourable for these opportunistic infections. After all, everyone is exposed to them. Why is it only some people who develop illnesses?
    It all comes back to the gut.... again, to a point. And genetics, according to
    Dr Shoemaker.

    Going back to my case.

    I improved initially from the CAP, but as time passed I began to get worse. I wasn't recovering inbetween pulses. Leading up to my last pulse of metro on the 22 April, I had just completed a two week course of Interfase Plus/EDTA and as soon as I took metro, I was hit with multiple scary symptoms. Cardiac, and polyneuropathy. It was awful. I could feel a cold buzzing, burning sensation which started in my hands, arms and lower legs and rapidly spread all over my body. I didn't take any more metro and called my GP. I had waves of something surging through my left arm, up my neck to my face resulting in explosive flushing. Accompanied by a feeling of doom. I was getting lighting bolts and tingling. I thought I had poisoned myself with metro.

    My GP ran a bunch of tests, but said he didn't expect to find anything remarkable. He felt I had released a ton of neurotoxins and the metro was the icing on the cake. I had been getting intermittent milder symptoms before taking the metro.

    Over the next week I became a bit better, but then I became worse again and my face, back of neck, scalp, shoulders and arms/hands went numb. Lower legs too. It was scary. I felt nauseated.
    My flushing had become so horrendous, it surpassed the brimonine hell. I couldn't lay down for a moment, and as a consequence, stayed up, 24 hours per day, which caused it's own set of problems. I fell asleep out of exhaustion every now and then for an hour, and upon waking, my face was an engorged swollen blob, nose bleeds, lip split and bleeding. I was back to wanting to die. I was exhausted. The flushing hurt as it was so forceful. This lasted some weeks.

    We had thought the ZZ cream I had tested next to my ear and forehead was playing a role too, as we could recreate the numbness on other parts of my body. I had decided to test it on some stubborn spots, not to use over my entire face. We still feel there is an interaction of some sort.

    I already knew about Questran Lite, but had originally decided I didn't want to take it, but in light of recent events, felt I must try it. My GP was keen and urged me to take it. Cholestyramine is very constipating and much like swallowing a bag of cement mix. Phenylalanine can cause diarrhea in some people. It did with me, to start with. Plus my symptoms became even worse. Dr Shoemaker warned this can happen in some people, but it is unknown why. Coagulase negative Staph has been considered, but I don't understand how this ties in.
    I have to miss the odd day due to constipation. Plus I need laxatives. I will be changing to Colestid next week.

    How Cholestyramine works.

    Cholestyramine binds bile. It is taken on an empty stomach and thirty minutes later something fatty needs to be eaten to stimulate the flow of bild. Chol is waiting like a catcher's mitt to bind it and transport it out of the digestive tract, preventing it from being reabsorbed. It is binding fat soluble toxins.

    One week later, my flushing has reduced significantly. I am able to sleep through the night and my face is less red during the day.

    Feeling has returned to my body. Now and then my left thumb feels a bit odd. Sort of numbish. I no longer have the cold burning sensation in my limbs.
    My left arm feels a bit weak, which is a worry, but it is improved.

    So far my GP feels neurotoxins definitely play a role in my case and probably all rosaceans.

    In my case he has ordered an MRI, just to make sure nothing else is going on. Such as MS. I fear the scan due to the hot tunnel, which will make me flush, but that is another subject.

    What does all this mean for the average rosacean?

    It probably means that all these foods reactions we have are fat soluble toxin related.
    Many notice improvements when fasting. Some people notice a reduction, but not a clearance.

    Cholestyramine is rather benign, but it can come with side effects and ideally shouldn't be taken long term. Another option is Cholestid, which also has side effects.
    And of course, it isn't a cure. It will remove the toxin build up. The source still has to be eradicated.

    At this stage, I tend to feel it might be useful in the more severe cases of rosacea to reduce inflammation and gain some control over their disease. If toxins are playing a role, reducing them should give the face a rest and let the vasculature recover somewhat.

    It might allow therapeutic agents to be more easily tolerated, especially if they are causing die off.
    Last edited by Mistica; 22nd May 2011 at 02:59 AM.
    Previous Numerous IPL, ZZ cream. (Nose)
    Supplements: Niacinamide, Vit K2, D3, Moderate Dose Vit C, Iodine, NAC, Taurine, Magnesium. Very low dose B's. Low dose zinc (to correct deficiency).
    Skin Care: Trialling No Cleanser, Niacinamide gel 4%.

    Treating for gut dysbiosis under specialist care. (This is helping).
    GAPS diet foods/no nut breads etc.
    Very small amounts of Fermented Foods.

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