Week of October 1, 2024
Hello! A Member Update:
Because we can’t control the incoming flow of questions, instead of weekly updates, we will now update the Q&A portal twice a month, with double the questions! Look for them the beginning and middle of the month, plus we’ll notify you on our social media channels when they are in the portal. Be sure to keep submitting your questions in the portal, too, as they benefit everyone in the Surviving Mold Community. Thank you, and all the very best to your health journey!
Featured Member Q&As, October 1-15
1/ Presenting CIRS to your physician and others in your life
Q: As a CIRS patient just starting my journey, how do I present what CIRS is to my primary care physician, kids’ school, church and my family?
A: The first step in teaching what CIRS is, means that you must no longer be ill. Trying to help others when you need help yourself is just too much for a normal human to take.
Here are a few resources to consider in guiding you and your attending practitioner as you recover:
- Surviving Mold’s free downloadable overview guide, “Got Mold?” is a good reference to share with others to help them understand CIRS and all it entails.
- You may be interested in reading and sharing the Practitioner Shoemaker Protocol™ Essays, which explain each step of the Protocol in more depth, and are written by our certified Shoemaker Protocol™ practitioners in their own language.
- Our “Physician’s Resources” tab on the Home Page has the necessary resources for your attending physician, and you as well, to guide you through diagnosis to recovery with the Shoemaker Protocol™
- These resources are summarized in the SM featured article, “Answers to your Questions about: Practitioner Resources and Certification,” which is a good place to start.
- As you get better, and you will, the articles collated for you on Actino Central, located on the SM website, will give you more information to share with your primary physician and others.
- If you should choose to continue your learning journey, the textbook, The Art and Science of CIRS, is required reading in the practitioner programs, and may also be of interest to you. That book is available on the SM website and is sold for less than $25. It would be an invaluable investment in your journey to recover, but also teach and support the CIRS cause.
2/ CIRS and Vitamin D3
Q: Do CIRS patients tend to have poor Vitamin D3 absorption and/or difficulty maintaining a vitamin D level? If so, what is the cause.
A: There is no difference in CIRS patients compared to the normal population in regard to vitamin D-3 absorption or maintenance.
3/ Pulmonary embolism, testing
Q: Is there any correlation of CIRS to pulmonary embolism or increased ochratoxin A, gliotoxin derivative and trichothecene group.
A: Yes, CIRS is correlated with Pulmonary hypertension and hypoxia. A test, HIF1A, is routinely included in GENIE.
There is no relationship between urinary mycotoxins and human health.
4/ Livedo reticularis
Q: Is Livedo reticularis caused by CIRS, permanent?
A: We have no data showing Livedo Reticularis is caused by CIRS. And treatment of CIRS has not changed the course of Livedo Reticularis.
5/ Long COVID and CIRS testing:
Q: I have had long Covid for the past couple of years, and may have potentially contracted CIRS beforehand, since I had unidentified chronic illness before long Covid that met CIRS symptom criteria (in the years before Covid I would have met 17 symptoms across 11 CIRS categories- I now meet 25 across 12).
I completed CIRS lab tests recently and many came back positive. However, as I understand it, many of these readings can be impacted by long Covid. Are there any test results from what I’ve done that would specifically indicate (or discount) the presence of biotoxin illness, specifically mold or Lyme, separate from long Covid? Are there any other tests I should consider that would confirm or deny biotoxin illness separate from long Covid?
A: We can use GENIE testing to separate Covid from CIRS. We also can give specific causation for fungi, actinos and endotoxins separate from Lyme. Long Covid is associated with priming of specific causation to endos and actinos.
6/ CSM titration dosing:
Q: I had intensification reactions to taking both Welchol and CSM but I stopped binding because it was causing fatigue and the rental I was staying at was questionable. I was able to move to a clean house. I started the No Amylose Diet about one week ago. What dosage of CSM do you recommend that I begin binding with? Should I titrate the dose and for how long?
A: For those with intolerance to CSM who are willing to try to titrate the dose begin with ½ a teaspoon of CSM once a day for two days, on day three go to ½ tsp twice a day. On day 5 increase to ½ tsp three times a day. On day 7 ½ tsp four times a day. Continue to increase the dose every two days. You will be taking CSM or Welchol for several months.
7/ Are there weight guidelines for CSM dosing?
Q: Given the maximum dosage for cholestyramine is 24g/day, have you had any heavier patients that have increased the dosage or frequency of CSM (5-6 times a day or increase the dose to 5-6 grams, 4 times a day? Do you think this would have increased benefit or does it appear 4grams, 4 times a day is maximal benefit?
A: CSM is not absorbed so body weight has no impact when we are looking at binding surface on the small bowel. We have had people that weigh 600 pounds treated successfully with CSM with one scoop 4 times a day. We have no study showing advantages in extra dosing; the extra dosing will simply give extra side effects.
8/ Stages of symptoms
Q: Is biotoxin illness characterized by different stages of symptoms, systemic abnormalities, etc.?
A: We do not use symptoms or labs to stage weighted significance to differences in these parameters. Instead, we look for absolute resolution of objective parameters as one proceeds up the ladder of the treatment protocol.
9/ Environmental Testing:
Q: My ERMI score is 10.5 and the HERTSMI-2 is 30. How is the actino test related to CIRS and WDB’s?
A: Your HERTSMI-2 is significantly elevated. Actino testing should be done to rule out an additional exposure besides HERTSMI-2.
10/ Measuring the biotoxin load
Q: Is there a way to test what type of biotoxins and/or toxic load in my body? I know from the ERMI what molds cause me to become sick. Is there anything I can read that will help me?
A: There are two approaches to measuring biotoxins. One is dust sample results performed by EBI, link [https://www.survivingmold.com/legal-resources/dr.-shoemaker-essays/a-physicians-guide-to-use-of-actinobacteria-indices] found on the SM website.
It may also be helpful to refer to more information on Surviving Mold site about EnviroBiomics laboratory and their recommended testing protocols and kits. {Link to the updated EB page]
The second is GENIE. Note, there are multiple lectures available on SM including the series called Lessons from Genie that can assist you. Similarly, there are 10 papers in the Actino Central section of SM; knowing the basic science will help you make informed decisions.
11/ GENIE
Q: Does the GENIE test tell me for sure if I have CIRS?
A: Genie is not included in the case definition. It defines the physiology far better than any other test. Here’s a brief overview:
GENIE stands for “Genomic Expression: Inflammation Explained.
GENIE uses differential gene expression to tell us about abnormalities in gene functioning in illnesses characterized by chronic fatigue, and the application of transcriptomics to confirm hypometabolism. Understanding the gene expression lets us use targeted therapies based on our published, peer-reviewed work.
If you are interested in learning more about GENIE “Lessons from GENIE” are available on the site, and include 2 presentations and a downloadable paper for $10.
12/ RNA Vaccine
Q: I have been reading up on the RNA vaccine that is developed against Covid-19. I found that such a vaccine triggers the immune system to create it`s own version of the virus and then the T-cell and antibody reaction. My question is thus; What could possibly go wrong with such a vaccine in a person with CIRS?
A: One of the concerns about the RNA based vaccines is that while the vaccine triggers a specific antibody response to a specific protein, this unique and interesting availability of immune protection will fail if there is suppression of CD3D and CD38. More than HLA, these T-cell gene suppressions must be assessed to determine potential improvement with vaccine use.
13/ Cardiomyopathy
Q: I have suffered a reduction in my cardiac ejection fraction from a normal 51% to a low normal of 40%. I have been living for months in a water-damaged rental with evidence of mold growth, ongoing water leaks from the roof as well as leaky pipes.
A: From your description (you provided more information then I have included in this question) it seems clear that you have satisfied the first requirement of the case definition for a chronic inflammatory response syndrome caused by exposure to the interior environment of water-damaged buildings (CIRS-WDB) by virtue of the ongoing water and visible mold growth.
While I would like to see the organism speciated, consultants from the EPA and CDC would say the mere presence of this amount of water intrusion and visible mold obviates the need for specific testing. We have a small percentage of CIRS-WDB patients with elevated C4a who have developed cardiomyopathy in the past. The steps that you are advised to take would be to obtain the laboratory studies needed to show that you do indeed have the symptoms and lab parameters that parallel those of patients reported in peer reviewed published literature regarding CIRS-WDB. If we assume for minute that you do meet the case definition criteria, then the question has to be, “Do you have a series of possible explanations for your reduction of ejection fraction?” On this list would include coronary artery disease, pulmonary hypertension with reduced venous return to the left atrium, other sources of cardiomyopathy and then remodeling associated with elevated C4a and possibly elevated TGF beta-1 due to CIRS. There is no reason that we can discount the possibility that your ejection fraction problem could be related to your mold exposure but having said that, there is a long way to go to get to a confirmed diagnosis here.
