Week of August 5, 2024

1/ Adrenal fatigue

Q: I have toxic mold disease but I am having symptoms of both mold exposure and adrenal fatigue. Will VCS separate the two?

A: In your note, you state that you can separate symptoms of “adrenal fatigue” versus mold exposure; I am unable to do that as I have not seen any standardized definition of adrenal fatigue. If you have blunted ACTH for a given cortisol then that finding would help confirm this diagnosis. I see the term adrenal fatigue bandied about often; I almost never see any satisfactory supporting data.

If you truly have a blunted adrenal response to intravenous ACTH that abnormality could possibly affect your VCS depending on the cause of the reduced ACTH or reduced adrenal response. As a side note, the most common way to be stuck with this difficult to treat condition is prior use of replacement corticosteroids for one reason or another. If MSH deficiency is present then the chances of “getting away” with even mini-dose cortisol therapy that will invariably suppress ACTH approach zero.

Even if you don’t have the level of MSH recorded (rarely do I use use Quest for MSH measurements; use LabCorp but remember the actual normal range is 35-81 pg/ml), sequential use of VCS will be your friend as you sort through problems of ACTH combined with MSH deficiency and CIRS.

2/ Disability

Q: My illness has progressed to the point I am unable to work. What diagnosis do I use in application for disability?

A: If you are speaking about Social Security disability, the diagnosis that you use are ones that are supported by the testing that you had done. The most common is to show reduction of V02 max and elevated pulmonary artery pressure. If you are applying for long term disability you will need to include a functional assessment form and have documentation of why you are unable to do particular activities. Having specific elements of our laboratory protocol as part of your

diagnostic submission will provide assistance but by themselves are not enough to guarantee disability will be granted.

There is an excellent section on disability on the SM site.

3/ Diagnosis; Cleveland Clinic

Q: I have been newly diagnosed “mold,” by the Cleveland Clinic. I am involved in a dispute with my landlord who refuses to authorize ERMI testing, relying instead on spore trap air testing. Moreover, they want to see my blood work to see that I have “mold.” What are my legal rights?

A: There is no restriction on your ability to perform ERMI testing or HERTSMI-2 to bolster your legal argument. The case definition based on the 2008 US GAO Report requires some documentation that you truly do have the potential for exposure to the interior environment of a water-damaged building. For this I would recommend HERTSMI-2 using Mycometrics in New Jersey as your best choice. Please note I have no conflict of interest to disclose with any mycology laboratory.

I am stunned that your landlord is requesting that you divulge personal health information to him. Sounds to me as if he has already been speaking to a predatory mold defense attorney. There is never any requirement to disclose any personal health information to any 3rd party short of a court order. Were you in litigation you would have to release a copy of your medical records.

I am concerned that while the Cleveland Clinic remains one of the bastions of academic American Medicine, they are inexperienced in the diagnosis of CIRS-WDB and in fact, have been less than proactive over the the years regarding patients with chronic fatiguing illnesses. I am hoping that they will have the documentation that you indeed meet the 2008 case definition for this illness. I am happy to review your records for you to confirm that your diagnosis is made in the proper fashion. Your medical records will not be disclosed to any 3rd party by me, especially information-hungry defense attorneys.

If your physician hasn’t been referred to the Surviving Mold Physician resources including the Shoemaker Protocol™ background and guidelines and lab order sheets, than it may be in your best interests to do so. Or consult with one of our Shoemaker Protocol™ trained practitioners to support your case with the proven, published, diagnosis labs and tests.

4/ Electromagnetic frequency

Q: Do EMF’s have any role in amplification in mold problems? I read an article that said that they do.

A: Part of the problems that I have in trying to assess EMF is absence of any diagnostic laboratory studies. Even here in rural Eastern Shore of Maryland, we can see a cell tower

in the distance. We drive by voltage wires every day on nearby Route 13. Yet despite those exposures that make other people ill, the vast majority of patients I see do not react adversely to EMF.

5/ Enterohepatic recirculation

Q: If cholestyramine stays in the gut, how does it remove toxins from other tissues? My brain seems to be affected so I am interested in how to remove mycotoxins from my brain.

A: The cholestyramine Learning Module I’ve created may be of interest to you. In the module, there is the PowerPoint and there is the text provided with protocols and the video itself.

Mycotoxins comprise only a small amount of the total inflammatory burden patients have with exposure to interior environments of water-damaged buildings. Focusing on mycotoxins is like looking at one foot of the elephant and ignoring the rest of the beast.

NeuroQuant brain imaging clearly shows us that the main source of brain abnormalities is inflammatory and not a direct toxic effect.

There are references to mycotoxin effects on a variety of tissues but in the human, we must consider other elements such as bacteria toxins, actinomycetes toxins and the huge host of inflammagens.

Fortunately, the mycotoxin research panel used at ProgeneDx shows differential gene activation caused by inhaled mycotoxins but will not show activation from simple ingestion of mycotoxins.

6/ Expert witnesses

Q: Is there anyone in the Rhode Island area that could review the mold reports and support us in litigation?

A: We have a panel of physicians who have experience in medical/legal aspects of CIRS. I would suggest that you contact the individual physicians in the certified physicians section for assistance. The short notice before trial may end up being a hurdle that is insurmountable. If you can obtain a delay and postpone your trial initiation then your new expert can possibly help you but with less than two weeks’ notice I see no chance that anyone can assist you in this endeavor.

7/ Sauna

Q: Will an infrared sauna help with the CSM detox process during that initial step?

A: Directly, no. CSM continues to be the all star in the detoxification phase as it works to physically bind with the opposite charged biotoxins and offenders in the system and directly remove them, typically within weeks. Welchol continues to come in second place as a weaker charged, but still effective substitute that tends to take a bit longer for desired results.

That being said, traditional and infrared saunas usually make people feel great and they feel they’ve had a certain level of cleansing relief, whether through sweating, relaxing, or other functions, and so I have no qualms about use of saunas. I see no harm with interference of treatment, provided you avoid dehydration.

I am aware there are many claims, primarily from environmental medical physicians, that infrared saunas do a magical thing. As you might expect, I asked to see confirmatory before and after data. None has ever been produced.

8/ Suicidal thoughts

Q: I have been diagnosed with biotoxin illness and am trying to live on my disability check of $750 per month. My TGF beta-1 is 13,000; I am homeless and feel that I cannot longer care for myself. Do you have any suggestions? I feel no choice but to kill myself.

A: I see hope in that you are reaching out to share your situation and commend you for doing so. I also hope it offers some relief to note that with this illness, deep depression and affected mental health can be one of the symptoms. Many, many CIRS patients have had despairing thoughts and situations. At the very darkest hour of this illness with seemingly no hope, the shining light at the end of the tunnel are the life-changing responses to our treatment protocols.

I urge you to seek counseling and support right now as there are now many mental health resources available to all income levels through local or state resources, as well as organizations that provide help. You do not need to go this alone, and there is help and assistance for you.

I hope it helps to know that more than 95% of people with biotoxin illnesses have felt that there was no help and no use in going on. Yet, they have found the support they needed physically and mentally, and they are surviving and even thriving with this illness.

I also urge you to seek assistance from a primary care physician regard to the matter ASAP. Point them to the physician resources on the Surviving Mold site. There are lab order sheets and a diagnostic process, as well as the well-documented Shoemaker Protocol™ steps to get them started.

There are also emergency crisis line call centers to reach out to especially if you need help off hours. Please do not hesitate to reach out. There are many local and state resources available unknown to you now.

And/or reach out to a trusted friend, family member, or advisor/mentor in your life without delay. While this person may not be trained in helping you with the illness, ask them to help you in assisting you in finding the help and support you need, both physically, mentally, and to find a living situation and assistance for you.

9/ Supplements

Q: I take a lot of supplements five times a day. I have reviewed some of your concerns about supplements and would be pleased to stop them. Please advise.

A: Supplement use must be accompanied by documentation of benefit of such use. Many people will take an enormous number of additives to the diet, including supplements, based on faith or suggestion that “substance X” may be of benefit. Science would not permit making multiple interventions at a given time so any conclusion regarding benefit or adversity cannot possibly be drawn. If you were on oodles of supplements, I would discuss with your physician the possibility of going off one at a time, assessing benefit or not, after one week. Use of symptoms is a very crude approach to measuring benefit but maybe the only cost effective approach for you.