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Guidelines for using Cholestyramine (CSM) and/or Welchol ! To bind and remove biotoxins from the body, thus reversing chronic inflammatory response syndrome (CIRS) What to expect from CSM or Welchol Cholestyramine (CSM) is an FDA-approved medication used to lower elevated levels of cholesterol. It has been used safely for over forty years in millions of patients who have taken the medication for extended periods of time. Welchol has one-fifth the potency of CSM and is also FDA approved to lower elevated cholesterol levels. Off-label uses of CSM and Welchol You have been given a prescription for CSM or Welchol to be used for only a short period of time to treat your chronic, biotoxin retention-related illness. The FDA (6/28/99) ruled that there was no reason to expect an increased risk to health from use of CSM in a group of patients who have biotoxin illnesses compared to those who don’t. Therefore such use is exempt from repeating FDA clinical trials to show safety. Your prescription is given to you under this FDA exemption. This use of CSM is called “off-label.” Off-label use is completely legal, ethical and is part of standard medical practice. You need to know that your prescription is for CSM being used off-label. How CSM and Welchol lower biotoxin levels Neither CSM nor W is absorbed into the body. It helps you get better but it adds nothing to your system. All they do is reduce biotoxin carriage. Because these medications can bind minerals, we recommend that in your supplementation regimen you should include a high potency multivitamin with minerals in your daily supplement regimen, to be taken at least 60 minutes prior CSM or Welchol. CSM is taken 30 minutes before food so that it will be located a little farther down into the small intestine as the stomach empties partially digested food into the upper part of the small intestine. This gastric dump is met with pancreatic and intestinal enzymes to finish the digestive process. Bile also arrives to release an amount of negatively charge biotoxins into the gut space. These biotoxins will be locked into ankle cuffs and escorted out of your body by CSM or Welchol. Welchol is user-friendly in that it can be taken with meals. It is a weaker binder and less likely than CSM to bind minerals and prevent their absorption but also less likely to yield symptom benefits over time. Provided there are no prolonged or frequent re-exposures to biotoxins, CSM and Welchol will pull biotoxins from tissues into the bloodstream and from there through the liver into the bile. The key concept as to who gets better and who does not, is removal from ongoing exposure to the toxic airborne admixture that is known to develop in unattended water-damaged buildings. How long will I need to take CSM or Welchol? The answer differs for each case. Length of treatment depends on: How effective you are at avoiding prolonged or frequent re-exposures to contaminated air, dust, and personal articles (ultrafine particles have a way of following you around). • Whether you suffer from other conditions in addition to CIRS. • How well you adhere to the directions for using CSM and/or Welchol. With no ongoing exposure the range is 3 to 6 months for CSM and 6 to 12 months for Welchol. • Why would I want to take Welchol instead of CSM? 1. If you are highly chemically sensitive, Welchol is better tolerated than CSM. 2. If you have a mast cell activation disorder, Welchol is better tolerated than CSM. 3. If the CSM timing routine is too difficult to manage due to your work schedule, you might, as an example, use CSM in the morning and at bedtime, while taking the more user-friendly Welchol with lunch and dinner while at work. 4. Welchol tends to be less constipating. If constipation on CSM cannot be resolved, a stepdown to Welchol may help coax your bowel to cooperate. What should I know about Herxing? On CSM or Welchol, symptoms that you’ve been having may worsen, sometimes dramatically. As biotoxins move from tissues into your bloodstream your inflammation increases. This is known as symptom intensification due to toxin mobilization, commonly referred to as a Herxheimer reaction, or Herxing. Technically, Herxing is what happens when antibiotics show your immune system where the bacteria are and your immune system’s attack response causes your symptoms to flare. Using CSM or Welchol to bind and remove biotoxins is just a different way to cause symptom flares. The term “Herxing” has been widely adopted as a way to describe the phenomenon of symptom intensification when mobilizing biotoxins with CSM or Welchol. Lack of Herxing indicates that you have not yet reached a therapeutic dose. Too much Herxing indicates a need to adjust the dose and explore Herx moderation maneuvers. As you start treatment with CSM or Welchol, Herxing is a good sign because it means that toxins are being mobilized for export from your body. Some Herxing is therefore better than no Herxing because it confirms that we’re mobilizing toxins. We want your Herxing to be manageable because you need to function while being treated for CIRS. Manageable Herxing is better than “brain on fire” Herxing. We aim to stay in the middle lane where Herxing is manageable. How can I control Herxing so it remains manageable? During the week before starting CSM or Welchol, take a high quality fish oil supplement at roughly a dose of 2.4 grams of EPA and 1.6 grams of DHA per day, divided into AM and PM in doses. You should also consult the separate handout titled Herx Moderation Guidelines. Park Ridge MultiMed [email protected] (847) 232-9800 2 THE CSM PROTOCOL NOTE: If you take any “empty stomach” AM medications, start here and continue at step 3: 1. Take any “empty stomach” AM medications (eg, thyroid, doxycycline, rifampin) right after you wake up. 2. One hour later take your daily supplements and other AM medications (may take with a small amount of food). NOTE: If you are not taking any “empty stomach” AM medications, start here at step 3: 3. Take CSM one hour after AM medications and supplements and one half hour before a meal. 4. Mix prescribed amount of CSM powder in 4 to 6 oz. of distilled water or juice. Stir well and swallow. Always drink an additional 4 to 6 oz. of distilled water after taking the CSM. Wait at least 2 hours before your next dose of CSM. 5. For the meal one half hour after taking CSM, eat something that has at least two teaspoons of healthy fat. Examples of good fat include: Butter, Coconut Oil, Avocado, and Olive Oil. 6. Take CSM 4 times a day as often as you can, and a minimum of 3 times a day if you can. 7. If you currently take medication or supplements to help with your sleep, take them at least one hour after your last CSM in the evening. THE WELCHOL PROTOCOL NOTE: If you take any “empty stomach” AM medications, start here and continue at step 3: 1. Take any “empty stomach” AM medications (eg, thyroid, doxycycline, rifampin) right after you wake up. 2. One hour later take your daily supplements and other AM medications (may take with a small amount of food). NOTE: If you are not taking any “empty stomach” AM medications, start here at step 3: 3. Take a single tablet or a packet of Welchol powder mixed in 4 to 6 oz. of water or juice) with three meals on day one. Monitor symptoms. 4. If well tolerated, on day two, take two tablets or packets of Welchol powder with three meals. Monitor symptoms. 5. If well tolerated, on day three, take three tablets or three packets of Welchol powder with three meals on day three. If well tolerated, can increase to two tabs or packets three times daily with meals. 6. Eat two teaspoons of healthy fat with meals when taking Welchol. Examples of good fat include: Butter, Coconut Oil, Avocado, and Olive Oil. Park Ridge MultiMed [email protected] (847) 232-9800 3 WELCHOL DIRECTIONS FOR PATIENTS WITH MULTIPLE CHEMICAL SENSITIVITIES OR MAST CELL ACTIVATION SYNDROMES Start with 1 tablet with a meal on day 1. On day 2, take one tablet with two meals. On day 3, take one tablet with three meals. On day 4, if you’re noticing no changes in how you feel so far, take two tablets with three meals. On day 5, if you’re still not Herxing, then continue at two tablets with three meals for the next seven days. If you’re Herxing on this dose of Welchol in a manageable way on 6 tablets of Welchol per day, I’ll prescribe the Welchol and you can experiment with working up to 3 tablets with meals daily. If you are not Herxing on Welchol at two tablets with meals three times daily, I will prescribe CSM because you probably need the stronger binding capacity. Start with half a scoop (or packet) of CSM 30 minutes prior to one meal on day 1. On day 2, take half a scoop (or packet) of CSM 30 minutes prior to two meals. On day 3, take half a scoop (or packet) of CSM 30 minutes prior to three meals. On day 4, if you’re still noticing no changes in how you feel, take a full packet of CSM 30 minutes prior to one meal. On day 5, if you’re still not Herxing, take a full packet 30 minutes prior to two meals. On day 6, if you’re still not Herxing, take a full packet 30 minutes prior to three meals. Avoiding Amylose 1. To get the best results from CSM or W, it is best to adhere to an amylose-free diet. Amylose is a starch molecule that could slow the movement of toxins to CSM or W. Amylose has a high glycemic index and too much at one sitting can trigger an insulin spike, which in turn can heighten inflammation. A low amylose diet can help lower an elevated MMP-9 level. 2. Amylose-containing foods to be avoided include: a. wheat, rye, barley, oats, white rice and all breads and processed foods that contain these grains. b. root vegetables (potatoes, sweet potatoes, beets, peanuts, carrots, parsnips etc. (except for onions and garlic, which are amylose-free). c. Bananas (the only restricted fruit). d. Foods with added sugar, sucrose, fructose, corn syrup, or maltodextrin. Park Ridge MultiMed [email protected] (847) 232-9800 4 Potential Side Effects Constipation: If you experience any constipation (less than one bowel movement daily) while taking CSM or Welchol, use Miralax as directed to maintain regular bowel movements. Reflux: Acid reflux can occurs in some patients early on but it usually subsides on its own. Should reflux persist or become harsh, options include an over-the-counter antacid such as omeprazole or ranitidine. Another option for reflux is the natural remedy known as D-Limonene (ITI), which can form a bubble net that prevents acid reflux into the lower esophagus, and is associated with lower side effects than OTC antacids. Monitoring You can monitor changes in visual contrast sensitivity every 4 to 6 weeks while taking CSM or Welchol to document changes related to lowered biotoxin burdens. Should a once abnormal VCS turn normal while on CSM or Welchol, yet not be accompanied by improving signs or symptoms, you can anticipate that your symptoms will start to subside soon. For most patients, Herxing starts to subside within 3 to 4 weeks. Shortly thereafter, patients notice a trend toward symptom relief that correlates with a trend toward reduced inflammation markers. Of course, full symptom relief may not occur if have one or more concurrent conditions causing symptoms. A short list of examples includes Lyme disease, other tick-borne infections, chronic fatigue syndrome, autoimmune disease, neurodegenerative disease, or mast cell activation syndromes. In such cases, certain symptoms may linger unless they are treated with methods appropriate for such conditions. If your MSH baseline level was low, you should undergo the deep nasal swab to culture for Multiply-Resistant-Coagulase-Negative-Staph (MRCoNS). If positive, a compounded BEG spray can help eradicate this troublemaker, as its continued presence threatens a full recovery. If you are removed from ongoing exposure (as indicated by an ERMI score <2 or a HERTSMI-2 score of <11, able to pass a VCS test, and you never showed or did show but eradicated MRCoNS, then you are a candidate for a compounded VIP nasal spray to address lingering CIRS symptoms. Going forward Once you have cleared biotoxins from your system and you begin to feel normal again, you should anticipate that random re-exposures to water damaged buildings whose air space is contaminated (often invisibly so), your innate immune response to inhaled toxins can make you feel “sicker, quicker.” Once you recognize that you are reacting to a water damaged building, your next move should be to gracefully bow out of that air space. The faster you leave, the sooner you’ll be able to bind and remove those toxins from your body using a few doses of CSM or Welchol. Now that you understand CIRS, you should never again experience it as a prolonged illness. Keep CSM or Welchol in your self-care toolkit and you can bounce back quickly and move on with your life plans and projects. Keith Berndtson, MD Park Ridge MultiMed [email protected] (847) 232-9800 5