Using a binder prevents enterohepatic recirculation of biotoxins. This is a crucial and first step in the treatment component of the Shoemaker Protocol. As long as there are biotoxins present they will continue to wreck havoc within the host (human). The innate immune system will be permanently switched on trying to alert the adaptive immune system unless this signalling process is halted. A chaotic biological response and massive inflammation will ensue until the biotoxins are bound and excreted.
All biotoxins exit the body through stools so you must be having a bowel movement at least once per day every day.
Cholestyramine is used as the binder of choice upon confirmation of CIRS, and also when there has been an exposure in order to prevent a relapse. For this reason, even when finished the active part of Cholestyramine treatment, CIRS patients will have a supply to use at all times. Some patients keep a supply at their workplace, locked in their car glove box or in a backpack or handbag so they can dose as soon as they feel they’ve had an exposure.
There are varied experiences taking this binder and some people suffer considerable side effects that can render them unable to work, attend school, study, drive, or socialise. Dr Shoemaker refers to this as intensification. It is often seen in Lyme patients. It is vitally important that the patient not become constipated, which is the most common side effect of dosing Cholestyramine. Drinking enough clear liquid throughout the day and perhaps adding some fibre like Metamucil is a recommended addition to your taking this medication.
CIRS-WDB sufferers need to find a way of persisting with the effective binding of biotoxins on Cholestyramine. This is the only binder (as well as Welchol) that Dr Shoemaker has found to shift biomarkers as evidenced by blood tests. Some people must start on a very tiny dose in order to move forward, but all Cholestyramine helps.
Taking some, is better than none. Adults on the full therapeutic dose of Cholestramine will be using 4g four times per day. Children are dosed according to weight but are often on half the adult dose.
One of the most valuable treatment adjuncts the Shoemaker Protocol incorporates is the use of high dose fish oil (omega 3 fatty acids) to help attenuate inflammation. Dr Shoemaker advocates PRE-LOADING of high dose fish oil prior to commencement of Cholestyramine. He suggests 2.4g EPA and 1.8g DHA daily for 10 days to help down regulate inflammation prior to binding biotoxins.
MMP-9 (Matrix Metallopeptidase-9) is an enzyme in humans that delivers inflammatory elements in our blood to our subintimal spaces (innermost part of the organs, arteries and veins) which can be highly elevated in CIRS-WDB patients. High dose fish oil can markedly reduce the havoc caused by this enzyme.
Some patients find they feel much better with the incorporation of this supplement and remain on high dose fish oil indefinitely. Other patients find it increases their body mass uncomfortably and choose to use it during the active treatment phase of the pyramid only and then cut down their dose markedly.
Your Doctor can write you a script for a pure Cholestyramine, without any additives or fillers in the contents of your powder. You can also have this dispensed to you in capsules which are much more palatable to take than the powder. Be diligent with your search for the best prices. Many Pharmacies are attempting to make money by jumping on the CIRS bandwagon, but are not able to secure the raw ingredient economically, so pass on the astronomical price to the customer. The CIRS journey is very expensive so aim to reduce costs where you can.
Alternatively, The PBS in Australia subsidise a medication called Questran-Lite which contains Cholestyramine mixed with Aspartame. This comes in 4g sachets which are mixed with water and taken four times per day. Your Physician can write a script for this medication ‘off label’ however it is still safe and reasonable to take this medication with approval from your Physician.
The Author of this site used Questran-Lite for 10 days initially (which contains the neurotoxic, nephrotoxic Aspartame) while waiting for a compounded version of pure Cholestyramine powder (in capsules which is far more palatable as the powder smells and tastes foul-it is derived from fish scales). Some patients are not bothered by the powder (which is slightly cheaper as it is not so labour intensive and does not require capsule shells) and happily take it mixed with orange juice or water.
After using the compounded Cholestyramine for 9 months, and running out, the Author of this site switched to Questran-Lite again and used this 4g four times per day (the full adult dose for a period of 8 weeks) and suffered severely elevated liver enzymes (ALT & AST both elevated 5 times the normal range) and the added complication of jaundice and malaise. So the recommendation to use a compounded version of Cholestyramine (minus the poison Aspartame) if you can afford the pure medication is high. Having a sick aspartame poisoned liver is dreadful and slowed down the Author’s recovery significantly.