Member Q&A December 1, 20224


Member Q&A December 1, 20224

Q&As: December 1, 2024

 

 

1/ VIP and CSM replacements

 

QUESTION: Are Monolaurin and Bentonite clay suitable for natural replacements for VIP and cholestyramine?

 

ANSWER: The search for natural compounds that would serve as binders for biotoxins has been continuing for 25 years. To date, there is nothing published that shows benefit in CIRS including Monolaurin

 

2/ Zeolites/CSM replacement:

 

QUESTION: Have you investigated or heard any reports on using Zeolites instead of cholestyramine?

 

It is well established that Zeolite will bind to positive charged metals but will not bind to the negative charged ions making rings in biotoxins.

 

3/ Insomnia

 

QUESTION: I have a chronic sleep problem and looking to see if it is mold related. What test do I take?

 

ANSWER: Look for MSH (alpha melanocyte stimulating hormone).

 

4/ Dermatologic conditions & sensitivity

 

QUESTION: I am 100% certain that mold have caused me to develop a high sensitivity with constant new onset of aches, tickling sensation on my skin, itching all over my body as well as becoming so hot that when in an environment that has lack of ventilation, I have to wear summer clothing for most of the year. Could the reason be CIRS?

 

ANSWER: Your condition could be consistent with a mast cell problem but also may simply reflect an elevated C4a. Appropriate diagnostic testing is indicated.

 

5/ livedo reticulitis

 

QUESTION: I moved out of my mold-infested apartment and since then I have leg pain, rashes and swelling. The rheumatologist diagnosed fibromyalgia. The dermatologist said the rash is livedo reticulitis and it caused by fibromyalgia. Could it be mold?

 

ANSWER: Diagnosing dermatologic conditions without a photo is difficult at best. There is no published literature I am aware of that would link livedo reticulitis with fibromyalgia or CIRS.

 

6/ Ketamine infusions:

 

QUESTION: I was curious about having ketamine infusions. I understand that CIRS folks generally have issues with glutamate production. Because ketamine therapy blocks glutamate receptors in the brain, would this affect the ability to detox from mold?

 

ANSWER: We have no data showing safety of ketamine infusion in CIRS.

 

7/ Aromatase

 

QUESTION: How do aromatase and low MSH fit into fertility issues?

 

ANSWER: If we have up regulated aromatase due to inflammatory responses in CIRS, and this is incredibly common, we will see enhanced conversion of testosterone to estrone and then to estradiol. Such disruption of normal androgens can have fertility effects both on men and women.

 

MSH has a significant role in regulation of LH and FSH, the gonadotrophins that regulate production of sex steroids. If there is evidence of abnormalities of FSH or LH, correction of MSH is a desired part of treatment.

 

8/ HLA testing denied by insurance company

 

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 might be that you need a roster of medical necessity letters.

 

9/ Headaches:

 

QUESTION: Does mold cause pain and pressure in the head?

 

ANSWER: Over 70% of CIRS patients have headaches.

 

10/ Mildew/CIRS symptoms:

 

QUESTION: I was exposed to black mildew. I lived in the building for 4 years coughing up blood, and diagnosed with pneumonia. I am also allergic to mold. What is the probability of me still having mildew in my system or mold illness? Does it cause ongoing fatigue and muscle weakness?

 

The illness could involve inflammation. If you do have CIRS/mold illness due to a genetic predisposition, the biotoxins do not move out of your body, and could still be affecting you. The Shoemaker Protocol™ diagnostic testing pathway is recommended. 

 

11/ VIP

 

QUESTION: What recommendation is made for someone who has reported nasal irritation from VIP:

 

ANSWER: Use topical Vaseline before spray.

 

12/ Labs

QUESTION: Could you suggest a laboratory for molds and HLA panel?

 

ANSWER: EnviroBiomics can help with testing and LabCorp can run the HLA panel.

 

13/ Lab testing

 

QUESTION: I see on the physician order sheet posted on the Surviving Mold website that it states to get the Lyme Western Blot, Von Willebrand’s profile, C4a and C3a test only through Quest. Is Quest the best lab to use?

 

ANSWER: Yes, Quest is a good lab for these tests.  

 

14/ MMP9 range/code

 

QUESTION: The MMP9 test from LabCorp has a range from 0-983. The website says 85-332. Did the code change?

 

ANSWER: Yes, the codes have changed. Please check with the lab.

 

15/ Back/kidney pain

 

QUESTION: I was diagnosed with mold illness. Recently, I was in an old building and later developed pain across my back/kidney area. Any suggestions?

 

ANSWER: See your treating physician to check your TGFB1, C4a and a current visual contrast sensitivity (VCS) test.

 

You can take the online VCS TEST now from home and receive a printable report, or if you are seeing a Shoemaker Protocol™ practitioner, they will be able to test you in-office with a hand-held test.

 

16/ TGFB1

 

QUESTION: My initial CIRS diagnosis was 3/23. I just had follow up labs and was concerned. After taking CSM for 2.5 months, I finally passed my VCS. However, my latest labs showed my TGFB1 went from 5623 to 15476. Should I be concerned about my TGFB1 tripling?

 

ANSWER: Yes, TGFB is a sensitive marker for re-exposure. I am glad that CSM has helped you pass your VCS but the reason we have 11 different steps in the protocol is that for some people there are additional issues that need treatment. CSM is often only a first step in addressing symptoms.

 

 

17/ CSM vrs Welchol

 

QUESTION: Sometimes I don’t get the recommended doses of cholestyramine because of needing to take it on an empty stomach during the day. I understand you can take Welchol with food, and I can tolerate both CSM and Welchol. Are they equally good or is one better than the other?

 

ANSWER: You may find that a shared dosing schedule of CSM and Welchol suits your daily schedule better. Here is the recommended dosing schedule:

 

Take one dose of CSM 30 minutes before breakfast and at bedtime.

 

Take Welchol with food at lunch and supper. You get near-equal benefit with less hassle. 

 

18/ CSM and weight

 

QUESTION: Does cholestyramine cause weight loss?

 

ANSWER: No, CSM does not cause weight loss. Before it was used in the Shoemaker Protocol™, historically CSM was used as medication to treat high cholesterol and weight loss has not been considered a side effect.

 

19/ CSM and digestive issues

 

QUESTION: I read many patients have trouble with CSM. Specifically, does long term use cause gut problems? Can you provide tips for using CSM for those of us who tend toward

slow transit time?

 

This is a common question and concern, and typically the digestive side effects are manageable.

 

To note, the benefits of using cholestyramine in the Protocol treatment have been extensively tested in multiple clinical trials, successfully used in tens of thousands of patients, and far outweigh the possible short-term digestive side effects. The possible effects can be alleviated with various simple remedies, including:

 

 

  • Supplementing with high-dose fish oil 1-2 weeks before treatment, as well as during therapy, can minimize the side effects.

 

  • To reduce constipation, patients often simply increase their fruit and fiber products or add a product with psyllium such as Metamucil. Prunes, magnesium citrate, or Miralax can be used in stubborn cases. Drinking adequate water is also essential.

 

  • Although often these symptoms naturally resolve within a few days, to help minimize indigestion or heartburn, or to make it more pleasant to “go down,” liquids can be used. Mixing CSM with Gator-Ade and processing the mixture in a blender has helped a lot of people. Or try apple juice, cranberry juice, or it’s been found that dissolving CSM in lukewarm water then adding ice can help reduce heartburn.

 

  • If they continue to experience unmanageable digestive concerns, I would use Welchol. Though less effective, and may take longer, it may be worth it to ease any unmanageable digestive discomfort.

 

Also, keep in mind, many CIRS patients experience diarrhea or soft stools as a symptom and CSM can provide a welcome benefit.

 

For more information on CSM, refer to Dr. Shoemaker’s CSM Fact Sheet available on the Surviving Mold site.

https://www.survivingmold.com/docs/CSM_Fact_Sheet.pdf

For comprehensive information on CSM you may also be interested in Dr. Shoemaker’s CSM Learning Module, available for purchase.