Updated on March 21, 2015
Step 2: Binders – Article Outline
For folks with Chronic Inflammatory Response Syndrome (CIRS), taking binders to remove unwanted biotoxins is essential to getting better. The two binders that have been shown to work consistently at bringing down inflammation and improving visual VCS scores are Cholestyramine (CSM) and Welchol. Unfortunately, taking these two binders properly is not as straight forward as taking a daily multi-vitamin. As a result, I personally believe CSM and Welchol get more of a “bad rap” than they deserve and that consequently, quite a few people are missing out on the benefit these binders afford.
To give you some examples of what I mean, if a person has high inflammation (MMP9) or has been exposed to either Lyme or various co-infections, it is virtually guaranteed that this person will have an intolerable intensification in symptoms if they don’t go on a special diet and take high dose oils for at least 30 days prior to taking CSM or Welchol. Likewise, it is essential to monitor VCS visual scores and blood markers like MMP9, C3a, and C4a before and during administration of CSM or Welchol. If not, then if there is an intensification in symptoms, there will be no way to tell is this is short-lived and can simply be dealt with by reducing dosage or, if it’s indicative of active Lyme necessitating stopping CSM and Welchol all together until the Lyme is knocked out. Similarly, older folks and people with a range of gut issues like the roughly 50% of those with CIRS that have slow moving bile (cholestasis) or bile reflux, need to take extra precautions to try to ensure they have the best possible chance at keeping the gas, bloating, and constipation that tend to trouble this group within tolerable limits.
Don’t get me wrong, I have absolutely no qualms with taking alternative binders to CSM and Welchol. However, as I discuss below, unfortunatley there isn’t any hard evidence like there is for CSM and Welchol that binders like charcoal, clay, zeolite, and such are effective against CIRS. I dearly wish there was especially for those that even when following proper protocol, just can’t tolerate CSM or Welchol. Certainly there is some nice research showing alternative binders are good at removing toxins of various sorts; it’s just that no one has ever gathered any data showing they work to improve VCS visual scores and reduce inflammation in CIRS. Having said this, I have no qualms against hedging my bets by adding in other binders. Personally, I take one to two daily maintenance doses of CSM mixed with acid-washed USP activated coconut charcoal and Redmond Bentonite Clay.
So the material in all of the sections on binders, except for the one on Alternative Binders, comes primarily from Dr. Shoemaker’s work. It is a sort of CliffsNotes for binders. It represents only a fraction of the valuable amount of information in Dr. Shoemaker’s FAQs. It is my attempt to provide a little more clarity on the subject of how to take CSM and Welchol properly along with providing what little insight I can into alternative binders.
CSM & Welchol Basics
- The first step of Dr. Shoemaker’s protocol is living and working in relatively mold-free environments. Check out Mold Testing to confirm your environment is safe. The second step is taking binders to remove biotoxins from the body. Note: In practice, it takes some people a long time to finally move to a clean home or a healthy work place. Rather than wait until they’re mold-free, a person diagnosed with CIRS should start taking binders right away.
- Biotoxins from mold, Lyme, algae, and the like consist of very small, negatively charged molecules that form anion-rings called Ionophores. These Ionophores are incredibly tiny in size ranging from 200-1,500 Daltons – one Dalton has the mass of one neutron. Furthermore, due to their structure, biotoxins are able to readily cross cell membranes. Nevertheless, the liver is capable of capturing these toxins and excreting them into bile that is then held by the gallbladder until food is eaten. At that time, the biotoxin laden bile is released into the small intestine. Unfortunately, because of their unique structure, biotoxins are readily reabsorbed during the recycling process in the body called enterohepatic circulation that serves to reuse bile and bilirubin. Without a binder that can prevent reabsorbtion, biotoxins remain in the body of folks with CIRS indefinitely setting off a cascade of inflammation driven symptoms. For healthy individuals with intack immune systems, biotoxins are removed through the normal route of antibody creation.
- Cholestyramine (CSM) is the binder of choice. CSM has been FDA-approved for lowering cholesterol for approximately 50 years and comes in powder form. Cholesterol patients have taken CSM for many years without complications proving that CSM is safe. Using CSM for treating CIRS is perfectly safe but considered “off-label” as it has only been FDA approved for cholesterol. Dr. Shoemaker recommends taking a one-a-day vitamin for people who are on CSM or Welchol for more than 6 months to prevent deficiencies in vitamins A, D, E and K.
- Welchol is the alternative binder to CSM when CSM isn’t tolerated. Welchol has fewer side-effects. Since it can be taken with food and is in pill form, it can also be carried when you’re away from home and taken in the event of an unexpected mold exposure. Since Welchol has only 25% as many positively charged sites to bind Biotoxins compared to CSM, it is much less effective.
- On a molecular level, Cholestyramine (CSM) and Welchol are long polystyrene chain molecules with side groups of positively charged nitrogen – called quaternary ammonium. It is the shape and size of the positive charges on CSM and Welchol that allow them to latch onto the negatively charged Biotoxins. The bound biotoxins are then held captive in the gastrointestinal track and are excreted in stool.
- Cholestyramine and Welchol bind Ionophores from fungi (mold), cyanobacteria, dinoflagellates, spirochetes, apicomplexans, and others. In addition, CSM also binds organic molecules like DDT, DDE, PCB’s, and Kepone to name a few. In cases of secretory diarrhea, CSM has helped by latching onto toxins from clostridium difficile (C-difficile). CSM and Welchol do not bind heavy metals.
- In general, within a week of starting CSM, Visual Contrast Sensitivity (VCS) test scores should begin to improve unless the person has MARCoNS or gets an “intensification” reaction either due to high MMP9 or active Lyme. In general, 75% or patients will see a 75% improvement of symptoms with CSM alone depending on a person’s haplotype, severity, and duration of exposure. MARCoNS and Lyme can prevent the typical improvement in VCS and symptoms. Note: In my experience, this statistic seems rather optimistic.
- It takes longer for Ciguatera patients to be cleared using CSM because the biotoxins bind more tightly to cells. As such, the biotoxins do not enter into the blood stream nearly as often where they are vulnerable to removal by the liver and subsequent binding by CSM.
- Cholestyramine comes in three forms – Regular, Light, and Pure. Regular CSM contains fructose and other additives. One 9 gram dose of Regular CSM contains 4 grams of CSM mixed with citric acid, fructose, mono ammonium glycyrrhizinate, pectin, propylene glycol alginate, sorbitol, sucrose, xanthan gum, artificial orange flavor, D&C yellow No. 10 aluminum lake, and FD&C yellow No. 6 aluminum lake to make up the other 5 grams. Note: I sleep worse if I take regular CSM before bed. Also, when I was taking 4 doses a day, I had significant weight lose.
- As if all the additives in Regular CSM weren’t bad enough, Light CSM LIGHT contains aspartame and other additives. One 9 gram dose of Light CSM contains 4 grams of CSM mixed with aspartame, citric acid, colloidal silicon dioxide, D&C Yellow No. 10, FD&C Red No.40, flavor (natural and artificial Orange), maltodextrin, propylene glycol alginate and xanthan gum to make up the other 5 grams. Note: Aspartame has been linked to birth defects, cancer, diabetes, emotional disorders, and seizures among others and should be avoided like the plague.
- The sugar alone in Regular CSM is enough to cause serious gut microbe imbalances in some. Many with multiple chemical sensitivities (MCS) can’t tolerate all the additives. Thankfully, you can obtain Pure CSM. Compounding pharmacies that carry pure CSM include Hopkinton Drug, Woodland Hills Pharmacy, and Clark’s Pharmacy – Bellevue, WA.
- On a personal note, I’d been taking pure CSM for about six months when my insurance company said it would no longer pay for the pure form. In speaking with the folks at Hopkinton Drug, I was told that the amount billed insurance for a one-month supply of pure CSM was around $9,000! As of late 2014, they sold a virtually identical product to individuals without insurance for around $400. Apparently, insurance won’t accept the less expensive alternative. When insurance is then faced with covering the over-priced CSM that they insist on, they then balk and say it’s too expensive! What non-sense. As a result, I’m essentially forced to pay for pure CSM out of pocket or use the Regular CSM with all the additives. Talk about insult to injury.
A reader wrote in saying that a batch of pure CSM from a compounding pharmacy turned out to be bad. Instead of the usual slight fishy smell, the powder smelled like VOCs from chemicals. Upon using the product, there was a temporary bad reaction. If you have any doubts, you may want to consider contacting your compounding pharmacy and asking for a small, free sample before committing to buy.
Dosing and Monitoring
- Adults take 9 grams of Cholestyramine (CSM) powder (each scoop contains 9 grams of which 4 grams are cholestyramine powder) mixed in liquid on an empty stomach four times a day for a total of 36 grams daily either 30 minutes before a meal or one hour after with plenty of water. Children under 18 and less than 120 pounds should take 60 mg/kg (27mg/lb) of CSM each dose three times daily – not including any additives. If no other medications are being taken, CSM should be taken 30 minutes before food or 1 hour after.
- As an alternative to CSM, adults take two Welchol 625 pills three times daily with or without food – although there is less risk of stomach upset if taken with food. Note: If at all possible, it’s much better to take CSM.
- Continue taking CSM or Welchol until VCS is normal and you’re on the last step of the treatment protocol – taking VIP. If re-exposed or you have a susceptible haplotype, expect to be taking maintenance and recovery doses until a more lasting cure is found. If symptoms worsen dramatically when binders are stopped, a hidden mold exposure is likely. Note: In the September 2015 presentation given by Dr. Shoemaker and sponsored by Hopkinton Drug, Dr. Shoemaker remarked in the Question/Answer session that CSM should be continued until VIP is employed. This is to ensure that inflammation from inadvertent exposures is kept as low as possible until VIP is used.
- After getting better and upon unexpected exposure to biotoxins, take CSM 4 times daily for at least 3 days and up to a week to prevent re-triggering CIRS. If the expected symptoms don’t get better, you’ll need to have VCS, C4a, and TGF-beta1 checked.
- Liquid medications that do not have a lot of negatively charged ions (ask your doctor) can be mixed with CSM – CSM binds only negative charged particles.
- Maple syrup, Gator-Ade, and tea can all be used instead of water when mixing CSM. If all else fails, almond milk (not cow’s milk), apple sauce, and ice cream can also be used but expect some reduction in benefit that gets worse the longer the time CSM is in contact with the food – don’t premix and then let it sit out.
- In general, waiting 30 minutes before eating or taking other medications like Bio Identical Hormones ensures both CSM and the medications are not diminished. Dr. Shoemaker suggests that drugs that require sustained levels in the blood like theophylline, warfarin, and digoxin can be taken with CSM. He also suggests that other drugs like thyroid hormones, Dilantin, theophylline, and Coumadin should be taken 2 hours before or 2 hours after CSM. In general, it is recommended that you check with your doctor if you’re taking blood thinners, digoxin, propranolol, diuretics, thyroid hormones, birth control pills, hormone replacement, seizure medicines, or antibiotics.
- The exception to all the rules regarding timing of CSM and Welchol is for those with gastroparesis wherein the stomach is slow to empty – see Side Effects & Complications below.
- Taking CSM 3 times a day is still effective but healing will take more time. After getting better, CSM may be taken 2 times daily as a preventative to offset brief and unexpected exposures. Taking CSM 1 time daily has no benefit other than helping with irritable bowel syndrome.
- CSM and Welchol take time to clear biotoxins. Even if they’re taken pro-actively before an exposure, the best that can be expected is that symptom will abate more quickly. Binders are not like armored steel is to lead bullets.
- For those with CIRS that are very weak, elderly, or have MCS, start with very small doses of Welchol and work up slowly.
According to Dr. Ben Lynch in this video at 55 minutes, CSM should be taken away from folate supplementation for methylation support.
Side Effects & Complications
- Just like with MARCoNS, it is important to take the VCS visual test and get MMP9 measured through a blood draw prior to starting either CSM or Welchol. The reason is that for some, symptoms worsen initially. Without these tests, you won’t be able to determine if this worsening in symptoms is indicative of Lyme (thereby requiring a change in protocol) or simply a temporary condition.
- If VCS scores fall by two or more places in column E followed by a worsening in column D along with a rise in MMP9, stop binders and re-evaluate the possibility of Lyme. If Lyme is still active, it needs to be treated. To prevent intensification in post-Lyme folks, a no-amylose diet must be followed and high dose omega-3 fatty acids must be taken for 1 month prior to re-starting CSM or Welchol – see Lyme Disease below.
- Personally, I recommend high dose fish oil and cutting out sugar and fast-acting carbohydrates regardless of a person’s Lyme status. Better yet, consider Dave Asprey’s Bulletproof Diet or Doug Kaufmann’s Phase One Diet.
- Kim G. wrote that taking a single dose of CSM can cause problems. CSM binds bile and this stimulates the liver to produce more. If CSM isn’t present to bind this biotoxin laden bile, it get reabsorbed and causes side-effects.
- Those with high MMP9, exposure to ciguatera, or MARCoNS are more likely to have a temporary worsening of symptoms. If MMP9 and VCS don’t significantly worsen, cut back dosage for symptom relief. You may need to take as little as 1 dose of CSM daily or even two Welchol 625 tablets three times daily, and slowly work up to 4 doses of CSM daily. Post-Lyme individuals can also experience symptom intesification – see Lyme Disease below.
Statistically, about 10% of Dr. Shoemaker’s patients could not tolerate the bloating, gas, and constipation that CSM can cause. People experiencing difficulty should try low doses of Welchol 625 and work up slowly.
Cholestyramine Side Effects
- For constipation, Dr. Shoemaker recommends soluble fiber that is found in prunes, dried apricots, cashews and walnuts. Pectin and soluble oat bran fiber (most is insoluble so read the label) can also be helpful. If you can’t get enough fiber from your diet, natural fiber capsules or powder like psyllium, pectin, and guar gum can work. Chamomile tea, magnesium, and higher doses of vitamin C also act as laxatives.
- About 10% of folks with CIRS have confirmed gastroparesis wherein food takes hours to empty from the stomach. These folks must use Welchol as CSM will bind to food sitting in the stomach. Start out with 1/2 of a Welchol 625 tablet and increase by 1/2 tablet every few days until taking 2 tablets 3 times daily.
- Roughly 50% with CIRS have either slow moving bile (cholestasis) or bile reflux. Bile reflux upsets the stomach and treating with reflux drugs like Prilosec and Zantac has no benefit. If bile is refluxed all the way to the mouth, the taste will be very bitter. Dr. Shoemaker has pre-treated with the gastrointestinal (GI) medicine, Sucralfate, to help those with bile reflux.
- As a matter or course, you can expect some acid reflux when first taking CSM.
- CSM in capsules can help get around some GI side-effects.
- To prevent GI problems, do not take CSM with antibiotics – especially Doxycycline.
Lyme & Co-Infections
- Dr. Shoemaker recommends trying to treat active Lyme with 3 weeks with Doxycycline for women and Amoxicillin for men – amoxicillin causes yeast problems in women. Since antibiotics reduce inflammation, people with CIRS will feel better while they’re on antibiotics. Note: The inflammatory blood marker called MMP9 (reflects cytokine levels) will remain high in Lyme patients even when they are given antibiotics if they have a susceptible HLA genotype.
- Those with a Lyme susceptible geneotype make up 21% of the population. These folks will remain sick from an inability to clear Lyme biotoxins even after the spirochetes are beaten into submission. Regardless of whether you have a susceptible Lyme haplotype or not, labs that include VCS, TGF-beta1, C3a, C4a, and the like should be taken prior to treatment and at various steps along the way.
- After attempting to knock out Lyme, it is essential that a no-amylose diet be followed along with taking omega-3 fatty acids (fish oil) at a daily dosage of 2.4 g EPA and 1.8g DHA for 1 month prior to starting CSM – to reduce inflammation. Without pre-treating with diet and fish oil, Lymies can expect a major “intensification” reaction between day 2 and 3 from toxin movement – regardless of whether Lyme is still active or not. This is not the same as a HERX. Mold, dinoflagellate, and cyanobacteria biotoxins do not cause a Herxheimer reaction. Instead, exacerbation of symptoms is a result of toxin movement. Note: I bet there are a lot of Lymies with multisusceptible genes that tried CSM or Welchol without first moving to a clean place and pre-treating with diet and oil. As a result, we know they most likely had wild swings in symptoms from the mold toxins in their homes and work places. On top of that, we know they’re quite likely to have an intensification reaction as a result of not having driven down inflammation for 30 days prior to starting CSM or Welchol. How many then incorrectly concluded that CSM and Welchol don’t work? My guess is quite a few. As they say, “the devil is in the details”!
- Once CSM is tolerated, continue until VCS is normal (or as good as it’ll get as MARCoNS can hamper improvement) and symptoms are as good as they’ll get at this point in the protocol. To confirm that Lyme has been successfully treated, stop CSM and then measure C3a and C4a after one week and then again at one month. If symptoms worsen after one week, continued mold exposure is very likely. If both C3a and C4a rise after a month, active Lyme is very likely. If C4a only rises after a month, continued mold exposure may be an issue – not all the time. If neither C3a nor C4a rise, the coast is clear and the next step in the protocol can be started along with testing again at two months to confirm C3a and C4a are not rising. One caveat is that Lyme that has gone untreated for more than 6 months will not show a rise in C3a. Bartonella does not cause C3a to rise.
- If C3a and C4a rise indicating that a 3 week course of antibiotics was ineffective, you now have a case for going to IV antibiotics that insurance companies should support. Although, if the patient wants to take another trial of oral antibiotics, this is OK too.
- On rare occasions, Dr. Shoemaker has seen Lyme patients that did not have a tick bite or an ECM (bull’s-eye rash), had low C3a and C4a, and had a negative Western Blot Lyme test. If VCS does not improve as expected, continue to consider the possibility that Lyme may be the issue.
- NeuroQuant is an excellent tool for distinguishing between Lyme and mold patients. MRI scans of the brain using specialized software look at areas in the brain that includes the forebrain, cortical, hippocampus, caudate, pallium, cerebellum, thalamus, putamen, and posterior gray. When mold is an issue, certain area will be smaller while others will be larger than normal. For Lyme, the signature of variations in sizes will be completely different. For under $100, this is an amazing tool that we have Dr. Shoemaker to thank for.
- CD57 values are the same in mold and Lyme patients so it’s not a good marker for Lyme. Besides, there are problems with accurate lab results.
- You can test for Babesia by having Quest run “Haptoglobin” on a blood sample. If Haptoglobin is low, then Babesia is likely the issue. You can also look at hemolysis blood smears for diagnosis. Use Mepron and then follow with Dr. Shoemaker’s protocol. Babesia can activate innate immunity in HLA susceptible individuals leading to CIRS.
- Per the work of Dr. Sam Donta, Borrelia makes a neurotoxin. Like Lyme, its essential to take high dose omega-3 fatty acids (2.4g EPA plus 1.8g DHA) and follow a no-amylose diet for 1 month prior to starting CSM. Otherwise, expect symptom intensification.
It doesn’t take long searching the Internet to realize there are many types of binders besides Cholestyramine and Welchol. Just to name a few, these include various types of activated charcoal, clays, chlorella (single-celled green algae), and zeolite (aluminosilicate mineral). In addition, there are numerous publications that discuss the types of biotoxins each of these binders are capable of removing. Below are a few such publications.
Mold and Mycotoxins – Often Overlooked Factors in Chronic Lyme Disease
A Review of the Mechanism of Injury and Treatment Approaches for Illness Resulting from Exposure to Water-Damaged Buildings, Mold, and Mycotoxins
Herbal Transitions – Biotoxin Removers
Medical Insider Detoxification Protocols
Cholestyramine versus Other Toxin Binders
Although many of the studies are “in vitro”, where substances are mixed together in a laboratory, the agricultural industry has been studying the real-life adverse health effects of mold biotoxins for decades. Weight loss, reduced fertility, miscarriages, liver lesions, pulmonary edema, diarrhea, and intestinal hemorrhaging, are just a handful of the documented ill health effects that occur when animals consume foods with higher levels of mold. You don’t have to look very hard to find numerous University studies looking at what binders are most effective for alleviating symptom in animals depending on the particular mold. In fact, there are quite a few commercially available binders in the form of food additives for binding mold toxins in animals. When added to animal feed, these binders greatly diminish the negative effects of contaminated feed.
Mycotoxin Adsorbents and Binders
Mycotoxins & Animals
Alkalinization of Urinary pH Accelerates Excretion of Ochratoxin A
Now before I go any further, I want to make a few very important points. The first is that the studies that I have seen done on binders focus exclusively on Mycotoxins. Mycotoxins are chemicals that mold produces to kill off competing molds and bacteria. It is how fungi stake out territory on that decaying piece of organic matter. They coat themselves with mycotoxin chemicals and exude it into the surrounding air. Anything that comes into contact with mycotoxins, including humans, has their health attacked by these chemicals.
Now get this. Mycotoxins make up only 2% of the total number of biotoxins created as mold and bacteria break down decaying matter! That’s right; the other 98% of toxic inflammagens consist of endotoxins, beta glucans, hemolysins, proteinases, mannans, spirocyclic drimanes, and volatile organic compounds (VOC). Furthermore, there are thousands of mycotoxins each with its’ own chemical structure. Which of all of these inflammatory toxins are causing CIRS? No one knows.
Mold and Mycotoxins: Effects on the Neurological and Immune Systems in Humans
The second important point is that when you clear mycotoxins using these non-proven binders, this does not mean you’ll get better! More specifically, if you look through the literature on alternative binders for those with CIRS that has been put out by either well-meaning individuals or alternative doctors, they commonly make claims like charcoal works well for binding the mycotoxin called Aflatoxin and that clay works well for binding the mycotoxin called Trichothecene. Well that’s nice; but as a matter of fact, Dr. Shoemaker tried all sorts of binders including high dose Chlorella, activated Charcoal, Chitosan, Pectin, Bentonite Clay and others. That’s quite the contradiction; don’t you think?
In terms of Dr. Shoemaker, we know that in his usual scientific manner, Dr. Shoemaker tried one binder only at a time with no other therapies while recording VCS visual scores and blood work results. He didn’t also give patients IV glutathione drips, anti-fungals, change their diet, treat parasites, and so on all at the same time. He didn’t rely on studies done in laboratories showing a particular binder should be able to bind certain mycotoxins. He didn’t assume that the ill-effects in cattle from consuming mold tainted grain were of the same nature as CIRS. Instead, he tried one binder at a time on people with confirmed CIRS and looked very carefully to see if their vision cleared and inflammatory blood markers consistently improved. Unfortunately, except for CSM and Welchol, they did not. Let me say that again, the other binders mentioned were not statistically helpful.
Does that mean if you take other binders that they won’t help? Certainly there are plenty of antidotal cases of people who’ve gotten better taking one of these non-proven binders and I don’t doubt that they did. Furthermore, the agricultural industry has lots of evidence showing relief from the ill-health effects in animals when mycotoxins are mopped up with various binders. So clearly there is some benefit. As an aside, Dave Asprey seems to believe when you eat moldy food it sets off the same inflammatory response as CIRS. On the other hand, when Dr. Shoemaker was first learning about CIRS, he had a small group of patients eat all the cheap peanut butter they could over the course of a couple weeks. Peanut butter is notoriously moldy. He didn’t see any change in inflammatory markers measured through blood work in these patients.
So who knows; maybe you’ll get lucky. Maybe the other 98% of inflammatory toxins aren’t as much of a problem for you because although mold has damaged your health, you don’t have a susceptible HLA DR genes and therefore are able to clear toxins with a lot less support. Maybe there is some unknown combination of therapies that includes these non-proven binders that works well for those with susceptible genes and CIRS. Maybe by taking a lot of Chlorella, you are able to clear an overload of mercury that turns out to be an underlying driver in your symptoms. Maybe sweating in a FIR sauna clears enough plastic phthalates and pesticides that you’re able to begin to heal. These are questions that will remain unclear until some doctor or institution actually tests these combinations in a scientific way against known markers for CIRS. Until then, the benefit of taking alternative binders for the treatement of CIRS remains unclear.
From where I stand, it’s a roll of the dice when it comes to treating CIRS with binders other than Cholestyramine (CSM) and Welchol. Personally, why would I want to dabble in various other binders to treat CIRS if I didn’t have too? CIRS is hell. Dr. Shoemaker found time and again that CSM and Welchol worked. The only way I’d ever consider not taking CSM or Welchol is if I just couldn’t tolerate them for one of the limited number of reasons discussed. In those cases only, I’m all for taking the binders you can tolerate while avoiding biotoxins, changing diet, and whatever other alternative therapies you can think of that help to build up your body so you can actually tolerate either CSM or Welchol. Note: Other binders do have numerous benefits not related to CIRS. I frequently take acid-washed USP activated coconut charcoal and Redmond Bentonite Clay..
Knowing what I do, if I was having a hard time with CSM, I would stop taking CSM or Welchol and work for 1 month on bringing down inflammation. To do this, I’d go on a no-amylose diet and take omega-3 fatty acids (fish oil) at a daily dosage of 2.4 g EPA and 1.8g DHA for 30 days. I would do this regardless of whether Lyme was in the picture or not. I would also cut out inflammatory foods and take anti-inflammatory supplements like Tumeric. I’d make sure to choose a Tumeric without “bioperine” which is a black pepper extract. According to Dave Asprey, not only does black pepper have a lot of aflatoxins but it also “raises bio-availability” which means it shuts down liver function.
While staying on the diet, fish oil, and supplements, I would then micro-dose Welchol at whatever level I needed to and then slowly, slowly build up from there. Knowing that symptoms can vary wildly for a whole host of reasons, I would try not to change my supplements and diet while keeping a journal before, during, and after trying Welchol. If after 2-3 weeks there was a steady worsening of symptoms, VCS, and an increase in MMP9, I’d switch to other binders that I could tolerate and re-evaluate the possibility of active Lyme and other factors like co-infections.
So I’ll leave it up to you to sort through the various publications and decide what alternative binder(s) to take when you absolutely can not figure out how tolerate either CSM or Welchol. To get you started, consider the article, Physicians Nathan, Teitelbaum and Shoemaker Rap About Mold, wherein Dr. Neil Nathan says, “As Dr. Shoemaker has emphasized over the years, cholestyramine turns out to be a superb binder for many of these toxins. Particularly ochratoxin. So if patients have ochratoxins in excessive amounts, that’s the treatment we use. However, if patients have particularly high aflatoxin or trichothecenes, we have discovered that chlorella, charcoal or bentonite clay are particularly good binders for those”. Antidotal evidence suggests that there are other combination therapies that can help sometimes. In THRiiiVE Summit 13 – Day One, Chris Shade mentions Chitosan (sea shells) has similar anion binding sites to CSM/Welchol. Whatever binder(s) you chose, make sure to monitor VCS and inflammatory markers like MMP9, TGF-beta1, C3a, and C4a. That way you’ll be able to tell if the biotoxins are being cleared. May you find your way back to health and soon!
I’m a big fan of your blog from the land down under. I’ve suffered from severe ME/CFS (classic pattern of symptoms – eternal flu-like feeling, crushing fatigue, brain fog, insomnia, PENE – Postexertional Neuroimmune Exhaustion, migraines) for nearly fifteen years and am 99% housebound. It all started in December 1999. I suffered from the worst flu of my life. I seemed to recover but during 2000 I would be repeatedly sick with flu-like symptoms until eventually I had the flu, and other symptoms, including IBS and disordered sleep, constantly. That old former housing estate apartment was water damaged (damp carpet wall to wall and a leak in the bathroom). It was another year before I was officially diagnosed as having ME/CFS…
I started the Shoemaker protocol 3.5 months ago after testing: three areas of atrophy, one of inflammation on my NeuroQuant MRI, showing both mold and Lyme fingerprints, VIP was 17.5 (Quest: range: 23-63 pg/mL), ADH was normal, leptin was 13.8 (Quest/LabCrop: range: Male: 0.5-13.8 ng/mL; Female: 1.1-27.5 ng/mL) – despite being a slender guy, estradiol high, VCS failed (other bloodwork isn’t available in Australia at present). MARCoNS test via DLM (Diagnostic Laboratory Medicine) was negative (STAPH AUREUS COAG POS-LARGE AM). HLA is 4-3-53 and 17-2-52A/52B/52C (we can only test for DR and DQ here). I was on CSM 4g qid (4x) for three months at which point I passed the VCS and went to 4g bid (2x).
HERTSMI (not ERMI) on my apartment where I spend all my time was 10, (A.penicilloiodes 340, A.versicolor ND, C.globosum 4, S.chartarum <1, W.sebi 170). There have been no water leaks/damage but coastal Australia (I'm from Brisbane) is renown for high humidity. I'm very conscious of airflow and mold growth and have a dehumidifier (when showering) and desktop fan (on 24/7) in the bathroom, use ceiling fans liberally in the living room and bedroom and vacuum with a HEPA vacuum, air bedding in sun regularly etc.
I follow the simplified methylation protocol due to homozygous MTHFR 677T/MTRR A66G , which reduces my high homocysteine, and am on several other supportive supplements (CoQ10, Vitamins A-K, iodine) and follow the Bulletproof diet, a low amylose diet.
I can only recall tick bites in my youth (30+ years ago) but haven't done IgeneX testing. My theory is that when I first got sick in a moldy apartment in 1999 this unmasked my Lyme biotoxins / HLA genes and set my ME/CFS in motion.
My symptoms have not changed since being on the protocol but neither have they increased. I didn't have any intensification with CSM although went entirely no amylose and preloaded with high dose fish oil. I'm don't have MCS and don't seemingly have reactions to mold, although I'm not sure if this because I've never been in clean enough environments to unmask. I've been in my current place for almost eight years but prior lived nearly a dozen different houses and apartments without any change in symptoms.
– I and several others are finding that the Surviving Mold VCS tests are not correlating with the VCStest.com "free" test, even though the later has a calibration section for your monitor. What are your thoughts on the differences between the two tests?
– Have you seen many NQ results? Mine and three others have all had Lyme fingerprints as well as mold. Do you think mold can unmask Lyme?
– Given my labs, history and lack of response so far what do you think of the trialling VIP as my next step? This is the direction my Shoemaker cert doc and myself want to pursue.
In appreciation of all your work,
Your biotoxin buddy, Caleb
ps Your Australian readers, although open to all, may be interested in a facebook group I co-admin "Toxic Mould Support Australia" which is a very Shoemaker-centric support group.
I like a good puzzle. Not being able to get proper lab work presents a good puzzle. How do we proceed in the face of limited information? Here are some ideas that came to mind.
1. For everyone reading this, I want to remind you all that I’m a retired General Contractor and Mathematics Teacher – see disclaimer below.
2. I added the ranges for your tests into your comment for ease of reading.
3. Given your history of exposure, susceptible haplotype, symptoms, and available lab work, it sure sounds like CIRS to me.
4. If one pours over Dr. Shoemaker’s protocol beyond treating MARCoNS, a no-amylose diet along with high dose omega-3 fatty acids goes a long way toward treating many of the steps with VIP making up the difference. As such, jumping to VIP in your case does seem reasonable.
5. You may want to “bolt on” some DHEA for high estradiol but only if MSH is above 35. If you do, monitor estrodial to make sure DHEA isn’t being inappropriately converted into estrogen. Otherwise, VIP can repair hormone levels. Hmm, I guess we don’t know your MSH so maybe no DHEA for you. On the other hand, Calcium D Glucarate helps pull out toxins and has the added benefit of reducing excess estrogen levels. In one study, Calcium D Glucarate was able to reduce the number of estrogen receptors by 48 percent.
6. If you complete the survey I made to gather information on binders to help out others with CIRS, you can see the Lyme notes on the complete Binders page. There is some interesting testing that can be done with C3a and C4a to discern if Lyme is still an issue. Unfortunately, this testing isn’t available to you. However, you were able to get NeuroQuant done showing some Lyme and mold brain anomalies. The reason I bring this up is there is always the outstanding question as to whether Lyme has been knocked out. Your NeuroQuant along with the fact that you didn’t get a worsening of symptoms with CSM seems to suggest active Lyme is not an issue. (I have not seen many NQ studies – only read about them.) I’m guessing you’ve tried all sorts of treatments over the years so who knows what the cumulative effect is in relation to typical Dr. Shoemaker statistics.
7. It’s hard to say much about ADH without osmolality. You have to do some math using both values to actually see if there is dysregulation.
8. I would definitely add some turmeric for what is quite likely to be high TGF-beta1 in your case. Turmeric is very helpful for inflammation and high TGF-beta1 among other benefits. Make sure to get the kind without a black pepper additive. The general recommendation is 1-2 grams but I think a person could easily double this when they’re symptomatic.
9. Unmasking of Lyme with the onset of CIRS due to mold exposure is an interesting question. According to Dr. Shoemaker, until a person’s genetic weakness gets triggered, they should have been able to clear biotoxins including Lyme and mold. Although, in my estimation the movement from being able to clear biotoxins 100% to finally acquiring CIRS can be a long, downhill slide. So could you have had a build up of biotoxins including Lyme prior to totally trashing your acquired immune system with a bad mold exposure? It sounds possible to me. I don’t know that I’ve read anything related to testing folks with CIRS susceptibility that are healthy to see if there isn’t some lower level of detectable inflammation and brain damage.
10. If you brought items from the moldy places you’ve lived, then you’ve unfortunately brought the biotoxins along too. I would monitor VCS to see if it worsens once you go off CSM. If it does, I’d seriously look at the possibility of being re-exposed.
11. Regarding discrepancies in VCS testing, it’s not surprising. I own the official VCS test. If you put the card under a microscope, you see that the images are made up of super tiny dots of colored pigment (blue, yellow, red, etc) in very tight patterns. You can not capture this detail even at 1,200 dpi on a scanner. The online tests images are crude approximations. Add on differences in monitors, settings, lighting, and so on, it’s not surprising that results between different VCS tests vary. I would stick with one test on the same monitor, with the same lighting, and the same settings so as to eliminate as many variables as possible.
12. Regarding your HERTSMI-2, that higher Aspergillus penicilloiodes, especially in the face of very low cladosporium and stachybotrys, is suspect in my mind. Of course I can only speak in relation to the testing I’ve done, but that’s a fairly high number for a fungi associated with indoor mold growth.
13. Other considerations would be anti-fungals for the gut and nasal colonies. Dave Asprey also believes Dr. Shoemaker is wrong in saying that those with CIRS should avoid steroids/cortisol. At the time I spoke with him, he believed small, biological dose of natural hydrocortisone could be very helpful.
14. With a serious illness that has gone on so long, you have to look at possible damage done in terms of brain mapping and your Spirit in general. This is an area that absolutely must be addressed.
15. In my experience, 3 months is very little time to realize significant symptom relief. Perhaps keeping a record that includes the symtoms on the Biotoxin Illness test along with others over a period of time might be instructive. You’ve probably heard the saying about if you’re sitting on two tacks and one is taken away, it still hurts like heck.
16. For high leptin, you may want to take a look at Dr. Jack Kruse’s Leptin Reset Diet that has other benefits for those with CIRS.
So now I have a favor to ask of you and anyone else that reads this. I’m just too busy to take on Facebook. As such, I’m hoping you could ask folks in mold groups to take the Binder Survey. I’d really like to see what binders besides Cholestyramine (CSM) and Welchol folks are finding helpful so I can share this on the site.
All the best.
This is very helpful Greg, thanks for sharing all this experience and knowledge. I’ve also been mixing my compounded CSM with charcoal – Takasumi Supreme in my case. I’ve been nervous that it may be binding to the CSM, rendering it less effective but without charcoal I get nausea after meals and lose my appetite. I’ve been wondering if adding in some red desert clay, green clay and/or zeolite would be a problem. Do you know if charcoal or the clays have ionic charges or affinities for quaternary ammonium groups?
I’m looking into this. I’d always heard CSM, charcoal, and clay could be mixed together but I haven’t found anything definitive yet saying this is the case. Maybe others know more?
This is an important question. Here’s what I’ve learned regarding mixing Cholestyramine (CSM), activated charcoal, and Bentonite clay.
I started by calling Hopkinton Drug and presenting the question via my SurvivingMold Membership. Neither the Pharmacist at Hopkinton Drug nor Dr. Shoemaker knew whether it was OK to mix these binders.
As such, I’ve tried to do a little research myself. We know from Dr. Shoemaker that Cholestyramine (CSM) and Welchol have positive sites that attract the negative charged Biotoxins and that it’s not a good idea to mix CSM or Welchol with liquid medications with a lot of negatively charged ions (atoms). Given that I was of the impression that it was OK to mix CSM, activated charcoal and Bentonite clay together, I was surprised to read numerous statements about charcoal and clay having negative charges that allow them to bind positively charged toxins. We don’t want our expensive CSM electrically binding onto the charcoal and clay – opposite charges attract.
Digging a little more, it appears that on a chemical level when activated charcoal and clay are mixed with water, they take on a positive charge by absorbing hydrogen (H+) ions. If this is the case, then it seems like it’s best to keep these binders in separate containers for storage but it’s OK to mix them together in water – as they will all have a positive charge in water and won’t bind to each other.
Here are three sources that corroborate the notion that they can be mixed together.
ILADS 2013 – San Diego Conference Takeaways
“You can give cholestyramine and charcoal together. It has been suggested that these may bind different types of mycotoxins.”
Common Toxins in Our Homes, Schools and Workplaces
“Dr. Shoemaker’s sequestration approach uses cholestyramine 3-4 times a day while Dr. Gray uses up to three sequestering agents (bentonite or zeolite clay, charcoal and cholestyramine) twice daily. The clay and cholestyramine are mixed together in a liter of water and drunk over the course of the morning/afternoon and then again after dinner. The charcoal is taken as pills or capsules.”
Mold Exposure Treatment Options
“Activated charcoal and bentonite clay are two natural binding agents and often taken with CSM.”
Thank you Greg, it’s a relief to know I’m not undermining the effectiveness of my expensive compounded pure CSM by mixing it with these other binders.
I have to have my CSM 2 hours either side of food because I can’t tolerate an amylose free diet – can’t keep warm, can’t sleep and lose weight. I’m hoping this is because of mold damage to my system and that it will improve after a time on CSM.
I recently ran out of CSM and used a combination of DE, Red desert clay, zeolite and Takasumi supreme 4 times daily. I had also just had a mold exposure, so it was bad timing. What I noticed was the whites of my eyes became bloodshot, energy and motivation disappeared and brain fog was terrible for the 2 weeks I was on this mix. After 2 days back on CSM my brain came back, energy and interest in life returned and the bloodshot eyes went too. I’m convinced from this experience that Shoemaker is right about CSM being more effective than the other binders.
That’s very interesting about CSM versus other binders. If a person can tolerate CSM or Welchol, it sure seems to be the way to go. By the way, I’m not 100% certain about mixing binders but it sure seems like its OK.
You can lose weight on CSM. I hesitate to say this because I don’t want you to stop CSM. It’s just that I think everyone deserves to know the facts. I lost weight taking 4 doses of CSM. I pounded high quality fats and meat (grass fed) along with safe carbs. In spite of what conventional medicine says, we need those fats! Think of it this way, it’s your chance to indulge and not feel guilty about it 🙂
I have read up on urine mycotoxin testing, and it is controversial. DONs (Vomitoxin, also known as DON, is a type B trichothecene) in foods can elevate Trichothecenes in the report, in an article that I read. DONs can be from grains, or kidney, liver, milk or eggs. I only have eggs from this group of foods. I am wondering if this could explain the elevation in this group. My elevation is “only” double the limit, not high from the other reports that I have seen.
Urine Testing For Mycotoxins Junk Science or Not?
I/We are more concerned by the persistent elevation of IgG immunoglobulins in the recent bloodwork. I have read a lot of studies on this, and most of them give some value to IgG, IgM, and IgEs for mold panels. The values are so high, that the doctor believes that the mold is being held in my body. The traditional knowledge is that IgGs, if high, indicate high sensitivity to a large mold hit in the past.
My questions are:
1. In reading your site, it looks like sinus fungal growths won’t cause elevation in urinary mycotoxins, but would they provoke an immune response in the form of immunoglobulins and cytokine production?
2. I have been on cholestyramine for several months. I am an 11-3-52B. I am getting the house physically checked next week for mold. If that comes out clean, what would explain the persistence of very very high IgGs in the mold panel. I know that there are other indicators (Shoemaker’s immune markers) to indicate how much one’s immune system is overreacting, but I have not had those tests redone in quite a while. When I had them done MMP-9 was ok, TGF-b2 was high but “just” around 3100. MSH was very low at 11. VIP was borderline low at 23. They did not take the all important C4a and C3a. I do have Lyme and Babesia as well.
Do IgGs fluctuate in accordance to the “threat” antigens that the body is encountering. My understanding of this is yes. The IgGs are produced for a reason, and don’t stick around at very high levels if there is no threat.
1. Dr. Brewer argues that fungi in the sinuses can produce mycotoxins – that when they treated the sinuses with antifungals, the mycotoxin counts went down and people felt better. Dr. Shoemaker has argued that there simply isn’t enough water in the sinuses for mold to make mycotoxins. Personally, I’ve discovered that treating with antifungals can be very helpful although my suspicion is that the reason folks get better and mycotoxin counts drop with nasal sprays is more complicated than simply knocking out nasal fungi.
If a person has a fungal colonization in their body, it can wreck all kinds of havoc that may very well involve elevated cytokines or an antibody response. Just look at what Candida alone can do.
2. The article, Neuroinflammation-Ignited by Toxic Burden or Immune Reactivity?, by Datis Kharrazian ties into this question nicely. Basically, Dr. Kharrazian and Dr. Vojdani are finding that antibody responses to triggers like chemicals and foods can cause autoimmune responses (antibodies to self) too. Once activated, it may take very little of any given trigger to produce large antibody responses across the board. By finding and then making lifestyle changes that eliminate these triggers, other over zealous antibody responses can be quieted down too. I think you’re right in deciding to make absolutely sure you’re not being exposed to mold. If not, then perhaps it’s about continuing to following Dr. Shoemaker’s protocol along with removing as many inflammatory triggers that you can find. By the way, commercially raised chicken are fed all sorts of nasty foodstuffs that includes GMO grain and arsenic.
I quote, “So, the environment that we live in is very important to us. What we are realizing now is that it’s beyond just mercury and mercury fillings. All of these other chemicals have huge impacts on inflammatory reactions. … In the immune-reactive model, we could have trace amounts of the compound causing reaction. … We are looking at antibodies to brain tissue and then we are looking at other triggers through antibody testing – whether it is foods, chemicals, or antigens. We try to decrease the immune reactivity to see if we can calm down the neuroinflammatory reaction.”
I looked for the Shoemaker reference regarding worsening pointing to possible Lyme but I could not find it. If you have a URL to a Shoemaker article, my doctor wanted to see that.
What I have read is that C3a high at any time can suggest Lyme. Mold is more typically C3a low and C4a high.
1. Encourage your doctor to read Dr. Shoemaker’s FAQs and watch his DVDs.
Dr. Shoemaker’s FAQs
“A patient has several exposures to WDB, history of asthma, allergies, Lyme, disabling daily migraines, fatigue, weight gain, body aches…”
“If there is an intensification reaction to CSM, the VCS score will show a fall in Column E followed by a fall in column D. MMP9 will rise the Day of intensification which usually occurs after 6-10 doses of CSM (need time for cytokine release and transcription for MMP9)…”
Dr. Shoemaker’s CSM DVD
At 20:50 minutes, “… but oh my, CSM made Lyme patients 10 times worse. Visual contrast fell; MMP9 rose. This was a massive storm of cytokine response compressed in time…”
By the way, an intensification reaction may be indicative of either active or treated Lyme.
2. You have to interpret C3a in conjunction with C4a as outlined in the Binder article.