Week of May 13, 2024
1/ Cholestyramine, short duration not helpful; ERMI & HERTSMI2
Q: I have been taking cholestyramine now for two weeks and I feel no relief. What does this mean for me?
A: We have had a number of people over the years improve dramatically in two weeks or less. The real driving force however behind development of the 11-step Shoemaker Protocol™ is that many people will have additional problems documented with baseline
laboratory studies and nasal culture that create barriers to “instantaneous” benefit. Simply stated, when people in the past didn’t get better with CSM alone, it was time to look for what was missing in their database. When I found something, like the biofilm-forming
staphs, for example, it was time to see what would happen if the staph were eradicated first. Applying this trial and error method has resulted in the current protocols, though much of the Protocol has been in place since 2004.
By far the most common reason for lack of benefit in short course cholestyramine usage is not enough time on treatment. This may be applicable to you. Second, there may be some problems with how you are taking cholestyramine dose. The powder should be dissolved in liquid and be dissolved on an empty stomach waiting 30 minutes to let the liquid clear the stomach and get into the duodenum before eating or taking any medications. Taking cholestyramine 4x a day is the recommended dose. 3x a day is not as good. 2x a day is a maintenance dose and 1x a day is a dose to help your irritable bowel
syndrome and very little else.
Taking cholestyramine alone will not overcome the adverse affects derived from spending time in water-damaged buildings. I routinely rely on DNA measurements of fungi using settled house dust as the medium for analysis.
Both ERMI and HERTSMI-2 are available at a low cost from Mycometrics with excellent levels of detection (www.mycometrics.com). You need to know that I have no conflicts of interest to reveal regarding Mycometrics. If there is an elevated ERMI (>2) or an elevated HERTSMI-2 (>10) I strongly recommend that cleaning and remediation be initiated to speed your resolution.
When people look at the physicians’ order sheet found on this website, very often the first question is “Are all these tests necessary?” If you are one of the “two-weekers” the
testing is not all necessary. If you are still symptomatic after two months then we go back and say “Why weren’t the tests done as instructed to begin this program?” The reason here is that each one of these tests does contribute to analysis of where people are
at a given time.
The CIRS is an extraordinary complicated illness. It is not one in which you can take a few doses of penicillin or doxycycline and magically walk around feeling fine. This is a case of not only correcting dense inflammatory response systems that are interacting
adversely but also correcting differential gene activation/suppression that is the basis of this illness.
If you have not completed your database, this would be a good time to do that. Skipping steps just won’t cut it for the complex patients. Monitoring each step along the way, including doing VCS, confirms that you are making progress with each sequential intervention as shown by objective testing that is admissible in courts of law across the country.
2/ Cholestyramine aids, side effects upon stopping the Rx
Q: I took cholestyramine successfully and fortunately didn’t have constipation. However, when I stopped it I got constipated. Any suggestions for this problem with cholestyramine?
A: You are right. Constipation is often a nuisance for people taking cholestyramine. If it weren’t for the dramatic superiority of cholestyramine when compared to other medications, including Welchol, I would not use it. Having said that, if you have reached a reasonable plateau of benefit with cholestyramine, and no other
treatment steps are needed I would switch you over to Welchol. Welchol can be constipating but if your bowel is “backwards,” Welchol may help you prevent reacquisition of illness with re-exposure to buildings that you might encounter and could provide some benefit for your bowel as it is less problematic than cholestyramine.
I rely on increasing soluble (dissolves in water) fiber in the diet (as opposed to insoluble fiber). Soluble fiber includes grandma’s good friend prunes; dried apricots, and, cashews and walnuts. Insoluble fibers like psyllium might help a few but usually the soluble fibers are needed to prevent constipation Pectin has helped a number of people as well as soluble oat bran fiber. This last product is available by request in grocery stores or may be found in the health and wellness grocery stores. You have to look for it carefully as most of the oat bran fiber for sale that I see in stores is insoluble.
3/ Cholestyramine treatment before database.
Q: I have been ill since 2006. I have an appointment with a mold literate physician in 6 months. What should I do until then? My decline is rapid and I feel I need a more aggressive plan than waiting.
A: I would suggest you discuss your situation with the practitioner who is scheduled to see you. If that appointment cannot be moved up, I would discuss with that doctor the possibility of having your labs done through one of the participating Shoemaker Protocol™ practitioners listed on this website. I would suggest complete openness in any discussion so that all physicians that are involved are aware of what their role would be. In that way you can have your database collected when you see your appointed physician later. If they are open to it, you can also point your attending physician to the physician resources on this site, including test and lab order sheets.
Starting treatment without the required database is never a good idea, nor is delaying treatment. The CIRS illness can be extraordinarily complex. Guessing about what to do is a terrible idea.
For more information and to get started on the Shoemaker Protocol™ diagnosis and treatment path, read the Quick Start Guide on the site.
4. Cholestyramine treatment without a data base
Q: I am diagnosed with Lyme and toxic mold. My doctor did a gene test and then started me on cholestyramine. I live in Hawaii.
A: The differential diagnosis of Lyme and mold is quite complex. I don’t feel that making a diagnosis of mold makes sense if the case definition is not met. You should have the potential for exposure as well as a multi-symptom, multi-system illness. Finally, there needs to be evidence of labs that are typical of those found in patients with illness caused by water-damaged buildings exposure.
Please understand that the symptoms of Lyme and mold overlap nearly 100%. In years gone by when I had no access to labs and did not know of the lab abnormalities that typify patients with mold illness, I used cholestyramine as a “shot gun” approach. All I had to follow way back then was clinical improvement (or worsening) or visual contrast sensitivity testing. I urge you to have a proper data base collected (which can be done in Hawaii) and follow the visual contrast screening. Please don’t think that skipping steps in the Shoemaker Protocol™ is a good idea. It isn’t. Trial and error in over 10,000 patients has been a good teacher.
5/ Cholestyramine, use in re-exposure
Q: What is the proper dose of cholestyramine to be used following unexpected re-exposure?
A: If a previously affected patient goes into a new building and sees evidence of water intrusion and fungal growth, the patient should vacate immediately. I routinely recommend that people keep Welchol with them in the glove compartment of their vehicle so that they can use something for treatment on an urgent basis.
If only cholestyramine is available, please initiate one scoop of cholestyramine taken four times a day for at least three days, and usually one week, to assist in prevention of illness.
Should there be persistent symptoms, I would recommend that visual contrast sensitivity be performed as well as measurement of C4a and TGF beta-1.
6/ Taking Cholestyramine with bio-identical hormones (or medications)
Q: If I take bio-identical hormones is that an issue with taking CSM?
A: Taking cholestyramine on an empty stomach, waiting 30 minutes (at least) before taking other medicines will not create an issue with other medications, including bio-identical hormones. If you are uncomfortable with just the 30 minute window of time after
cholestyramine, there is no reason you couldn’t wait two hours to have an additional confirmation that you stomach truly is empty after CSM.
7/ Cholestyramine, used with fatty foods
Q: My physician has recommended small amounts of avocado or coconut oil to be used 15 minutes following a dose of cholestyramine. The idea is to stimulate bile flow. If this is reasonable should I wait longer than 15 minutes before using the oil based materials?
A: In my initial cholestyramine protocol I included an attempt to stimulate bile flow into the duodenum as cholestyramine was making its way through the stomach. The initial approach to use alternating doses of olive oil and milk of magnesia. This protocol worked very nicely but as time went by we found there was no difference in rate of healing whether a patient used a compound that was a cholecystagogue (stimulating gallbladder contraction) or was a fat-containing liquid.
I have no objection to you using fatty materials 30 minutes after cholestyramine but I would wait that long. Any presumed benefit of stimulating bile flow diminishes beyond 60 minutes after CSM.
