Week of October 14, 2024
Q&As for Oct 15 - 31
1/ Creatine
Q: Has creatine been studied as an add-on supplement within the CIRS treatment protocol?
A: We used creatine in the mid 1990's for patients with chronic fatigue syndrome. We did not see success following creatine use in dosages that were initially low but then high at the end of the trial.
2/ TGFB1, autoimmune diseases
Q: Can you please explain the relationship between TGFB1 and ANA titers. Can it cause false positives for other autoimmune antibodies?
A: Elevated TGFB1 can adversely impact on markers of autoimmune diseases. False positive ANA is found in approximately 10% of CIRS patients.
3/ Low leptin
Q: My fasting leptin was very low. Could low leptin be due to mold illness?
A: Low leptin is found in approximately 10% of patients with CIRS.
4/ MMP-9 levels
Q: My MMP-9 just seemed extremely high to us and we didn't know if this was within expectation for CIRS.
A: An MMP9 should be done carefully by the laboratory. Specifically, the clot tube used to draw MMP9 should be chilled before drawing and spun down as soon as the specimen hits the lab. Normally, clot tubes are set up for 30-60 minutes in the lab before being run. That will distort the MMP and make the value abnormally high. I would make sure the proper protocol was followed with your MMP9 of 1300.
5/ Laundry:
Q: Our kids spend half of the time with their dad at a different house. How can we keep our new house mold free with them going back and forth?
A: Clothes can be washed with regular laundry detergent. A bigger problem regarding cross contamination will be porous materials.
Suggest you read the Q&A volumes as we go into detail regarding porous and non-porous items.
You may also be interested in the book: Mold Illness: Surviving and Thriving, which provides great information on this topic, and much more! (Written by Paula Vetter, RN and Certified Shoemaker Protocol™ Practitioner, Laurie Rossi, RN, and Cindy Edwards, CBA)
Or to get started, check out “Make it Your Season to Thrive: 2 Keys and Great Tips for Living with CIRS” (particularly the 2nd Key on managing a safe home).
6/ Borax
Q: Do you still recommend using borax to soak clothes.
A: I have never suggested using borax for clothes. Simply wash clothes in your laundry detergent like normal.
7/ MARCoNS
Q: I have been unable to cure MARCoNS. I have tried Rifaximin, BEG and Whisobax spray but nothing will cure the MARCoNS. The MARCoNS is now resistant to most antibiotics. I have severe nerve pain that has been confirmed to originate from the maxillary nerve of the maxillary sinuses, which is suspected to be caused by the MARCoNS. Not sure what else to do.
A: I am concerned that your severe nerve pain has been identified as a source of pain but at the same time MARCoNS being blamed for the pain. We have no data showing severe nerve pain related to MARCoNS. I assume that your treating physicians have considered a variety of nerve blocks; or treating the nerve pain as tic douloureux
We have seen use of probiotics lactobacilli to eradicate refractory MARCoNS. We do not see probiotics correcting nerve pain.
8/ Starting diagnostic testing for CIRS
Q: I have CIRS and MARCoNS and am using BEG spray. My provider suggested treating my husband as well since we share everything. His tests came back positive. Is a positive MARCoNS test and two mold HLA susceptible genes reason to pursue a full inflammatory work up?
A: I think your next step is for your husband to take the VCS on the SM website.
If he takes the test and it is abnormal then I would ask him to complete the symptom roster (which is part of the VCS test). If that is positive, then the labs would be worth doing.
To summarize, if he fails the VCS, consider lab work next.
9/ Prepping for knee replacement surgery
Q: I have had 4 nasal cultures in the past 5-years and 3 of 4 positive for moderate MRSA. I need bilateral knee replacements. I am trying to adequately clear nose preoperatively and want to avoid potential reactions with knee replacement. We started nasal NSAID spray. My orthopedist wants me to be culture negative preop. What would you recommend?
A: The use of EDTA for MARCoNS suppresses biofilm growth. You should be in good shape to prevent colonization from your nose to your new knees without NSAID spray.
10/ Mold Species:
Q: I had a Cladosporium herbarum score of 36,000 in my home which I am trying to understand. Is this from water damage and can it make me sick?
A: The mold that you are referring to is an outdoor dwelling organism. To date it does not make people ill.
11/ MRSA, MARCoNS:
Q: Does MRSA produce a biofilm or exotoxins? If you treat the MRSA in a patient with low MSH, will they develop MARCoNS? Should you normalize the patients MSH levels before treating the MRSA?
A: Your series of questions need clarification. Staph aureus, whether MRSA or not, can exclude MARCoNS from nasal cultures. MSH, is a guide to significance of MARCoNS or not as MSH rarely increases in value with treatment. We do not treat MRSA.
12/ Mycotoxins and Kidneys:
Q: How do the mycotoxins affect the kidneys because since 2022 my kidneys have been peeling off excess calcium and now they are finding that I have hyperparathyroidism.
A: I am uncertain what mold that you have been exposed to but nasal swabs showing some fungal species are not part of the case definition for CIRS. We do not use testing of urine for mycotoxins as part of the case definition either.
The medical, legal issues that appear to underlie your concerns are that the case definition which has been accepted in courts worldwide but mostly in the US, all require potential for exposure; symptoms the same or similar to those seen in peer reviewed, published literature; laboratory abnormalities being presence also the same or similar to those seen in published literature and response of objective parameters to treatment. We do not have any information confirming loss of calcium from kidneys due to exposure to CIRS buildings.
I agree with you having facts is your best defense.
13/ Remediation:
Q: Should one start binders before necessary remediations are performed while IEP is being contracted and remediation plans are being made?
A: Yes, starting binders’ pre-remediation is recommended.
