Week of April 8, 2024
Frequent Community Questions & Answers
We continue to get unique and case-specific questions as well as common questions that our community friends, members, and physicians continue to have.
This week, we answer some of the most common questions we’ve received from the community recently, complete with links and resources.
Here’s a quick look at what you’ll find below:
CSM vrs binder substitutes (and why CSM is still the most effective option).
Is there a way to make the Shoemaker Protocol™ DIY?
Is the Shoemaker Protocol™ affordable for someone “without resources?”
Is there insurance coverage for CIRS/mold illness?
What are the Shoemaker Protocol™ medication options?
What is the best way to test your home?
How does HERSTMI-2 home testing work?
Finding a CIRS practitioner to manage your case
And more!
The Overarching Answer: The Shoemaker Protocol™ remains the only scientifically proven, published, peer-reviewed answer to CIRS/mold illness recovery.
When it comes to treating CIRS/mold illness, there are a lot of alternative methods “out there” and we continue to field questions about them all! Many have been tested and verified and researched. And after 25 plus years, the overarching answer remains the same…
The Shoemaker Protocol™ stands as the only published, peer-reviewed, scientifically proven method, with thousands of documented patients over decades. Each step has been rigorously tested, along with the leading possible alternatives, and the Shoemaker Protocol™ remains the only tried, true and peer-reviewed pathway to long-term recovery and thriving in life again.
1/ CSM and alternative binders
Q: Is there an alternative binder to the Shoemaker Protocol’s use of CSM or Welchol?
A: The search for natural compounds that would serve as binders for biotoxins has been continuing for 25 plus years.
To date, there is nothing scientifically proven or published that shows benefit in CIRS including clay, charcoal, chitosan, monolaurin, or any other herbal remedy.
CSM has been extensively tested in multiple clinical trials involving patients with chronic biotoxin illnesses. The benefit of using CSM has been confirmed by two double-blind, placebo-controlled crossover studies.
There has not been published, peer-reviewed scientific studies demonstrating benefit from CSM substitutes.
First, it may help to learn more about CSM (and the Protocol substitute, Welchol).
Cholestyramine (CSM) is an FDA-approved medication used in an initial stage of The Shoemaker Protocol™ because it has a unique affinity for binding with CIRS biotoxins and effectively eliminating them from the body.
CSM has been used safely for over forty years in millions of patients who have taken the medication for extended periods of time for high cholesterol. The Protocol uses CSM for shorter, limited periods of time and works well for the vast majority of patients. Welchol can be substituted, though it may take longer to achieve the desired results.
The Shoemaker Protocol™ treatment anticipates any possible uncomfortable digestive side effects (constipation or heart burn), complete with suggestions for remedies to keep on hand “just in case.” For many patients, CSM actually helps with the symptom of diarrhea.
Here’s the basic science:
The reason CSM works so well, is that it’s positive charge (+) binds tightly with biotoxins, which are (-).
From the limited findings available it’s been shown that substitutes such as charcoal, chitosan and clay have the same (-) charge as the biotoxins, therefore a strong binding bond is substantially less effective or not likely.
For the few individuals who have extreme sensitivities to CSM ingredients, the dosage of CSM can be altered to a lower dose and gradually build. Welchol has also been substituted (although it has a lesser binding effectiveness, over time and with the appropriate dosage, it still works to release the necessary biotoxins).
Another option is to find a compounding pharmacy such as Woodlands that will offer CSM in a pure resin form that allows the full treatment without additional additives or ingredients.
2/ Taking activated charcoal
QUESTION: My doctor thinks I am too ill to take cholestyramine and wants me to use activated charcoal in the middle of the night instead. Will that be as effective as cholestyramine?
ANSWER: There are a number of questions that we have answered on this website regarding alternatives to cholestyramine. We have abundant objective data showing that Welchol can perform the same duties as cholestyramine at a slower rate, for patients who prefer the option, but to date no other nostrum has been shown to be effective by publication of objective parameters before and after individual use.
I am aware that a number of people value use of activated charcoal, particularly since it is not a prescription item. If you are going to use activated charcoal, proceed with due diligence and track the effects – or lack of effect.
First, be sure to collect a database on inflammatory mediators before you start the medication and after one month to see where you are. You can also take a VCS test prior to beginning and after 30 days to see if there is a change.
Also, please don’t use multiple simultaneous interventions. Other interventions can skew the effects and results.
Finally, I am uncertain as to why you would take activated charcoal in the middle of the night if you have a chronic fatiguing illness where restorative restless sleep is compromised.
As always, of course, your physician has a duty to answer your questions with proven fact-based answers, and if your physician has verification and/or case-specific reasons for taking charcoal in the middle of the night, then by all means listen to your doctor.
3/ ERMI and HERTSMI-2 testing
Q: If you have CIRS or are affected by mold, what is the recommended way to test your home for mold and the offending agents?
A: The recommended test for those affected by water-damaged buildings is the Health Effects Roster of Types Specific formers of mycotoxins and inflammagens (HERTSMI-2).
While the EPA does offer a broader mold test, the Environmental Relative Mold Index (ERMI), this test alone does not tell you if a building is safe for a CIRS affected patient to inhabit. The HERTSMI-2 scoring system was developed to go beyond what the ERMI test doesn’t show.
Specifically, it’s an index designed to predict safety of CIRS patients with re-exposure. HERTSMI-2, like the ERMI uses dust sample mold testing to assess the health of a building.
The HERTSMI-2 test pinpoints and quantifies five of the most common, and CIRS-applicable species of toxic mold known as “The Big 5”:
• Aspergillus penicillioides
• Aspergillus versicolor
• Chaetomium globosum
• Stachybotrys chartarum
• Wallemia sebi
This test is offered by EnviroBiomics ($130-$277) and Mycometrics ($155) You'll receive a test kit containing a cloth for wiping of various surfaces, sampling instructions, and a mailer for submitting the sampled dust for lab analysis. These labs also offer vacuum canisters to collect the dust samples. When you have your lab results, use the HERTSMI-2 scoring system on Surviving Mold’s site.
When you have your report, the downloadable HERTSMI-2 scorecard offered at Surviving Mold is designed to help those affected by water-damaged buildings. Follow the steps outlined on Surviving Mold's HERTSMI page.
Your results can be tallied and compared with the following interpretation:
- Under 10 - Safe
- 11-15 - Borderline; clean and re-test
- Over 15 - Dangerous for those with CIRS.
When you’ve done the HERTSMI-2 test and have confirmation of exposure, you can plan an organized approach to treatment of water intrusion and removal of the conditions that created the eco system that is hurting you.
If you are still seeking valid confirmation, call in a qualified mold inspector. Look for someone who will do a visual inspection and is armed with specific tools such as an infrared camera. They will be able to actually measure the dryness or wetness of drywall (and put a small hole through drywall if you suspect mold or moisture behind the wall). The inspector often begins the examination of your home in the attic, looking at the insulation and factor in condensation potential or humidity levels.
Be very careful if your inspector does not use HERTSMI-2 or wants to do air sampling as these two features identify someone who is not up to speed in what mold is and what actinomycetes are. If you hear from the mold inspector that you need to kill species, thank him for his time but don’t pay him a nickel. 99% of the particulates that make people sick in water damaged buildings are fragments of living organisms. They are dead. They are not alive. Killing what is dead will make no difference but removal of those particulates is absolutely essential for regaining health.
Also consider your work or school environments. It’s not uncommon for people to become sick from environmentally toxic workplaces or any place they spend a lot of time in. If you’ve ruled out your home, and suspect an environment you patronize is affected, assess how likely it is to get cooperation in running a HERTSMI-2 test. Some agencies and owners may be open to it, others may do their best to avoid the inquiry. Proceed as best you can with the information you have. If you are diagnosed with mold illness, you’ll need to remove yourself from any possible mold exposure, so ruling out the home is the first crucial step.
4/ How do you do the HERTSMI-2 test?
QUESTION: One of our children is having body rash issues that came on after we moved into our house 6 months ago. She has been treated with an antifungal but it is not clearing quickly. Our functional medicine doctor suggests that we look into mold and do a HERTMSI-2 test. How do I do this?
ANSWER: HERTMSI-2 testing is either performed on dust that you have obtained by vacuuming an area 3x6 for 5 minutes using a special cassette obtained through Mycometrics. There is a protocol in the instructions from that excellent lab that will tell you exactly what to do.
The paper that Dr. David Lark and I showed that use of Swiffer cloth testing was equivalent to doing vacuum sampling for dust provided a single Swiffer cloth is wiped in one direction at least over 10 horizontal surfaces that are not routinely vacuumed at home. You will not skew the HERTSMI-2 result from a Swiffer cloth if you have more than 10 surfaces but if you do less than 10 surfaces there could be a problem. Also, avoid areas of visible microbial growth when you do the sampling as we don’t want to overload the cloth with visible organisms.
5/ Self-treating
QUESTION: Is it possible to self-treat using your protocol?
ANSWER: The Shoemaker Protocol™ employs lab tests and diagnostic procedures that must be ordered by a licensed health care professional. I do not agree that it is safe or effective for an individual to take on this task without a comprehensive medical understanding of the illness and the Shoemaker Protocol™. A trained expert offers invaluable methodology to specifically and strategically treat the multi-symptoms and systems affected in the individual. There are multiple Shoemaker Protocol™ trained and certified physicians and practitioners listed on this website.
The next best way to go is to point your attending physician to the Physician Resources, including specific labs and tests, listed on this site. There is no one pat test or medication that conquers this illness. Step one is removal from the unsafe environment, and/or remediating it.
Learn more about the step-by-step Shoemaker Protocol™ in our downloadable guide, “Got Mold?”
If you think mold could be affecting you, check your symptoms and get started on the diagnosis pathway right now with The Shoemaker Protocol™ Quick Start guide.
6/ Obtaining VIP or CSM
QUESTION: Is it possible for individuals to purchase CSM or VIP or do you need a prescription?
ANSWER: Pharmacies can purchase either CSM or VIP in bulk for compounding in the U.S. As your question appears to be coming from Sweden I do not know what the regulations are for your country. These medications are available by prescription only to private patients.
7/ Cost and availability of treatment resources
I have had multiple health symptoms since I was sickened following a Hurricane. My home developed very high levels of Aspergillus and Penicillium. I moved out and still remain ill. I have multiple lab abnormalities but as I am on disability this time, I do not have resources needed to access care.
ANSWER: The treatment protocols that I use are not expensive once you have been confirmed to be removed from exposure.
Most insurance companies will cover costs of cholestyramine or
Welchol.
I would suggest that you discuss your lab abnormalities with one of the Shoemaker Protocol™ physicians (see home page). I do not agree that avoiding treatment because of financial terms at this time is justified as your disability is bad enough; you do not need ongoing progression of CIRS to add more injury.
If you cannot physically go to a medical facility and get your labs done, look into your insured, disabled, or subsidized home health care options. You will need to have your labs drawn. Some tests such as a NeuroQuant must be done in a medical facility.
You can take the first diagnostic test and affordably check your progress from home with the online VCS screening.
Once you have found a way to have the necessary medical tests and labs administered, it’s possible to consult with most of the Shoemaker Protocol™ practitioners via telemedicine options.
You can also point your attending physician to the Shoemaker Protocol™ Physician Resources for reference.
Get started on the Shoemaker Protocol™ Pathway with the Quick Start Guide from home right now.
8/ Insurance coverage
QUESTION: I have had my first patient that insurance refused to pay for the HLA DR by PCR. They are charging her $536 dollars, which is a lot for her. Does this happen often?
ANSWER: I would ask for the reason for denial of claim. Often a code isn’t transcribed right. It could be that you need a roster of medical necessity letters.
