Complete Guide to Taking cholestyramine (CSM) for CIRS Treatment: Tips, Tricks, and Everything You Need to Know.

If you’re navigating life with CIRS and using Cholestyramine (CSM), a prescription medication that binds to mould toxins, as part of your recovery, here are some strategies to maximise its effectiveness.

Disclaimer: I am not a medical professional, and this is not medical advice. These are tips based on Dr. Shoemaker’s work and my personal experience with the protocol and will hopefully provide some information on what to expect from treatment. Always consult your practitioner before implementing any of this or making any changes to your protocol.

Why CSM is Critical in CIRS Recovery

CSM was used up until 1987 as a cholesterol-lowering drug, before statins became more popular and is considered to be very safe - with FDA approval for over 50 years. This use of CSM, for treating biotoxin illness, is considered “off-label” use, however is completely legal and a part of standard medical practice.

CSM functions as a bile sequestrant, binding tightly to bile acids and biotoxins so they can be safely excreted in the stool. Taking CSM is step 2 of the Shoemaker Protocol, which has the most evidence-based success in treating CIRS. However, step 1—removing exposure to mould—is essential before starting CSM. Confirming your environment is mould-free through thorough testing is highly recommended as starting binders whilst actively being exposed to a water damaged building can cause exacerbation of symptoms.  

Some patients will go on to do all 12 steps of the Shoemaker protocol (or other protocol), whilst others may find relief after the correction of their environment and the CSM treatment phase alone.

How to Use Cholestyramine Effectively

1.    Timing Matters: For best results, take CSM on an empty stomach, otherwise food and medications will be bound by CSM rather than the mould toxins and inflammagens. Wait 30 minutes after taking CSM before eating or taking medications, or wait 60 minutes to take CSM if you’ve just eaten. If you have gastroparesis (~10% of CIRS patients), it will usually be advised to wait 60 mins after food before taking CSM (and consider that Welchol may be a better option). If you’re taking medications like thyroxine/theophylline/warfarin/digoxin/digitalis/coumadin and some others, then discuss with your practitioner as the gap may need to be longer. Don’t take CSM simultaneously with antibiotics, especially doxycycline, which has the potential for drastically increasing GI problems.

2.     Dr. Shoemaker recommends a dosing schedule of:

 • 4g 30 minutes before breakfast

• 4g 30 minutes before lunch

• 4g 30 minutes before dinner

• 4g at bedtime

3.     Mixing Tips: Mix CSM with plenty of water or a safe beverage like herbal tea or juice (cranberry, lime, or low-sugar options work well and aren’t considered “foods” here). Avoid milk. Aim for a smooth texture to avoid clumps so that it’s more palatable. Follow with a glass of water to stay hydrated and reduce constipation risks. I personally just use water to mix the powder in, as many do – however it does have a sand-like texture and takes some time to get used to.

4.     Start Slow if Sensitive: If you’re prone to reactions, you may be asked by your practitioner to start with a smaller dose (1-4 grams) and work up to the full dose. Full treatment is typically 4 doses per day (16 grams total). According to Dr Shoemaker, 3 x day is not as good, 2 x would be considered a maintenance dose and 1 x day will not help much. For me personally, I had no symptoms or side effects from taking either Welchol or CSM. He also notes that your HLA haplotype/gene type will not determine your ability to tolerate CSM.

5.     Prevent Constipation: Constipation is a common side effect. Magnesium citrate, magnesium oxide powder, or high-dose vitamin C (note: Vit C is high oxalate) can help. Increasing soluble fibre (e.g., prunes, cashews) may also help to alleviate symptoms. Make sure you’re having at least one bowel movement per day to prevent reabsorbing toxins (this is very important). Insoluble fibre like psyllium husk may help some people and Dr Shoemaker recommends a product called Miralax. For me, magnesium oxide power worked significantly better than anything else. I used NOW Foods Magnesium Oxide Pure Powder from iHerb.

6.     Be Consistent: CSM treatment is required for an average of 6-12 months and a minimum of 1 month. Others may only require a 3-4 month prescription. Duration is dependent on the VCS being passed, symptom reduction and absence of exposure to further water-damaged buildings. Some people will stay on a lower maintenance dose or take it short term when re-exposed to affected buildings. Since it needs to be taken 4 times a day, it’s best to set reminders or tie doses to specific times of the day to stay on track so that you don’t forget to take it.

7.     Pair with Diet: Before beginning treatment with CSM or Welchol, it is often recommended to follow a low-amylose diet and supplement with high-dose fish oil for two weeks. The low-amylose diet, which excludes grains, root vegetables, and bananas and a few other starch heavy foods, significantly enhances the effectiveness of the fish oil. Typically, this diet is followed for about two weeks before starting CSM. Once treatment begins, the diet can often be relaxed; however, many patients find they feel better long-term on a low-carb, paleo-style diet, as supported by recent research from Dr. Neil Nathan.

For those with anti-gliadin antibodies (your functional medicine practitioner will likely test for this), Dr. Shoemaker strongly advises a gluten-free diet. The recommended fish oil dosage is 2.4g of EPA and 1.8g of DHA, which can easily be achieved with products like Metagenics OmegaCare for Kids at three teaspoons daily. This protocol, with CSM introduced on day six of a 10-day course of high-dose fish oil, is designed to reduce the risk of intensification reactions.

CSM treatment can sometimes cause side effects, including reflux, constipation, and bloating. If these symptoms become severe, the dosage may need to be adjusted by your practitioner. Preparing with a five-day low-amylose diet and omega-3 supplementation ensures the body is better equipped to handle the mobilisation of toxins during treatment, reducing the likelihood of adverse effects and improving overall treatment outcomes.

8.     Monitor Vitamin Levels: CSM can bind fat-soluble vitamins (A, D, E, and K). If taking CSM for more than 6 months, consider a daily multivitamin and possibly CoQ10 supplementation (talk to your provider).

 CSM will also bind to a large series of organic molecules including DDT, DDE, PCB's and kepone (an organochlorine compound), as well as the toxins made by C. difficile and more, which is an added benefit for those needing to detox overall. It won't bind to heavy metals however and if this is an issue for you will need to be treated separately.

9.     Listen to Your Body: Some people experience detox symptoms as toxins are pulled out. Hydrate, rest, and slow down if needed and let your practitioner know. They can provide further advise and ensure that detox and drainage pathways are open.
 

10.  Alternatives: Welchol (Colesevalam) is very commonly prescribed over CSM as people generally tolerate it better and it can be easier to take, as it comes in capsule form rather than powder. It can also be taken with food. The dose of Welchol is typically 625 mg, two tablets taken two - three times a day. However, it has 25% of the binding capacity of CSM, so CSM is considered superior. I was initially treated using Welchol and had extremely positive results. I had a drastic reduction in symptoms, particularly brain fog, within 2 weeks. I later used CSM for a few months to detox after exposure in my workplace and car. For me, Welchol gives relief from symptoms within about 20 minutes after taking it if I have been exposed to mould and am feeling unwell. I don’t experience this with CSM, and rather see improvements over time. I personally prefer Welchol over CSM, so don’t be disheartened if you’re prescribed this!

11.  Other Binders: According to Dr Shoemaker, while natural binders like activated charcoal, bentonite clay, and chlorella may provide adjunctive support (and I have personally used a number of these in conjunction with CSM/Welchol) they lack the strong evidence CSM and Welchol have for reversing abnormal lab markers in CIRS. He does not recommend alternative binders unless CSM is not tolerated at all.

The reason CSM is believed to work so well, is that it’s positive charge (+) binds tightly with biotoxins, which are negatively charged (-). Substitutes such as charcoal have the same (-) charge as the biotoxins, therefore a strong binding bond is less likely. However, clinicians like Dr Neil Nathan have found that specific mycotoxins appear to be bound better by specific binders and are routinely utilising natural binders to support detox (for example he has found that bentonite clay, activated charcoal and chlorella bind well to Trichothecenes). You’ll need to work with a practitioner to determine which approach will be best for you, however CSM or Welchol are considered the primary medication for treatment.

12.  The Cost: In Australia, CSM costs around $330 for 500 grams. At a full dose of 16 g/day, the cost is roughly $330 per month. It’s hugely expensive. It can be purchased from compounding pharmacies, like Kingsway Compounding or Park Compounding. If you pay extra, they can make it into capsules for you rather than the powder form which is more palatable and more convenient. They can ship the medication to you for roughly $10-$15.

Questran Lite is a SIGNIFICANTLY cheaper version. It can be purchased from a regular pharmacy with a script and comes in 4g sachets. This product is used regularly for CIRS, but contains Aspartame. Most doctors consider that this is okay for short term use, but if you know you're sensitive to it, or additives like this, it may cause issues for you. I personally don’t tolerate fake sugars/sugar alcohols that well, so I went with pure CSM.

Questran Lite is covered by the Pharmaceutical Benefits Scheme (PBS). The cost of the medication is $31.60. If you have a concession card, it’ll be reduced to $7.70. The cost will remain the same irrespective of the amount needed, and the amount they will supply is based on the script directions. So if your practitioners writes that your script is 2 boxes x 50 sachets (like mine did), you’ll pay $31.60 each time you need more (or roughly $31.60 for 25 days at 16g/day).

(If I knew the difference in price between the two back then, I think I probably would have conveniently forgotten my artificial sweetener intolerance for a little while).

I have also used Welchol, which cost me $279 for 240 capsules + $13 shipping from Synergy Compounding Pharmacy in Crows Nest, NSW. A full dose of 6 capsules per day worked out at $292 for 40 days (approx. $7/day). Kingsway Compounding charges significantly more, at 180 x 625mg capsules for $406 ($13.50/day).

13.  Practical Tips

Storage: Keep CSM dry and sealed, especially in humid climates.

Cleanup: Rinse your cup immediately after mixing CSM to avoid residue build up – it can be very hard to get off! Brush your teeth or rinse your mouth well after taking CSM to protect your enamel.

14. Kids and CSM: CSM can be used in children (where directed by a practitioner), with dosing adjusted by weight. According to Dr Shoemaker, until children reach 55kg (120 pounds), he uses the FDA approved dose of CSM, giving CSM 3 times daily with a total quantity of 60mg/kg for each dose. After that weight, an adult dose of 4 grams four times a day is used. CSM can be given in apple sauce or juice to children without affecting binding capacity. There’s usually really only two main steps for children and that’s removal from exposure and (if required) taking binders.

15.  Moving Forward: CSM treatment is complete when symptoms resolve, lab markers normalise, and the Visual Contrast Sensitivity (VCS) test improves. Some patients transition to Welchol for maintenance or as-needed use during new exposures.

CSM is a powerful tool, but it’s not a replacement for avoiding mould exposure. Recovery relies on consistent effort to stay in safe environments. That doesn’t mean never entering a water-damaged building, just that you would not be able to live, work or otherwise spend large amounts of time in one without suffering negative health consequences once your immune system has become reactive. Taking CSM is a way to address the inflammatory response after exposure, but won’t prevent the inflammatory response from occurring if you take the medicine then go into the building.

What are your best tips for taking Cholestyramine? Share below and help others in the CIRS community thrive!

References:

Shoemaker, R.C. (2014). State of the art answers to 500 mold questions. BookBaby.

Gupta, S. (n.d.). Mold illness in children: CIRS kids with Dr. Scott McMahon. Mold Illness Made Simple. Retrieved November 26, 2024, from https://moldillnessmadesimple.com/mold-illness-in-children-cirs-kids-dr-scott-mcmahon/

Gupta, S. (2015). Surviving mold down under: A guide to implementing Dr. Shoemaker’s 14-step mold eradication process in Australia (Version 2.0). Surviving Mold. https://www.survivingmold.com/SURVIVING_MOULD_DOWN_UNDER_V2.0.PDF

Nathan, N. (n.d.). Neil Nathan [PDF]. Retrieved from https://cdn.shopify.com/s/files/1/0631/2686/4085/files/201_Neil_Nathan_CORRECT_SLIDES.pdf?v=1730314661&fbclid=IwZXh0bgNhZW0CMTEAAR2wg1jFoMWbpkSo61n7S8r4EeFhBDHkO_F28gZkR6hy3S3niZ27jqhUHfk_aem_Psg3xDZafc2a92Azixz8BA

Vosloo, W. (n.d.). Steps of the Shoemaker Protocol for treating Chronic Inflammatory Response Syndrome acquired following exposure to Water Damaged Buildings [CIRS-WDB]. Surviving Mold. Retrieved November 26, 2024, from https://www.survivingmold.com/docs/12_STEP_SHOEMAKER_PROTOCOL_FOR_CIRS.PDF

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