Week of May 1, 2023
1/ Toxic black mold, testing
QUESTION: If I am exposed and infected by toxic black mold, am I going to be ill forever?
ANSWER: This is complex question.
First, exposure to water-damaged buildings (WDB) and potentially “moldy enviroments” will mean exposure to other infectious organisms besides mold. Routinely found in WDB are bacteria, actinomycetes and mycobacteria, among others. Focusing on mold is not particularly helpful when it appears that mold exposure is a very small portion of what biotoxin or “mold illness” involves. We need to focus on the physiology of what is wrong and not necessarily guessing at the identity of organism, one
out of a mixture or organism that each could be harming you, to be causative. What this means is that the illness is treatable once an adequate data base has been accumulated and the 11 step protocol is initiated.
I would request that the idea of a toxic black mold (or yellow or green for that matter) be deleted from your lexicon. The color of the organisms makes no difference; focusing on black mold alone ignores the vast role of inflammagens that can be present in the indoor air of a WDB.
Second, we can look to the testing process to pinpoint infection and whether it’s by biotoxins, bacterias, or by a mold. The mold culprit, usually the Aspergillus species, is shown by a culture; without such a culture you can’t conclude infection. I am aware that many docs use antibiotics (antifungals) based on antibody testing. I disagree. Such testing, even if done in labs that are unquestioned simply show prior exposure and not necessarily active infection. There are effective protocols used to treat active fungal infection. Finding a single colony of a fungus in a sputum sample won’t cut it either. Colonization is common for reasons unrelated to infection. Finally, a nasal swab also isn’t good enough as we need to show evidence that the specimen came from a given sinus cavity. Fungal infection is a serious problem; the hurdles to obtaining a validated diagnosis are not simple to clear.
I recommend following the Shoemaker Protocol diagnosis and testing process, starting with an ERMI/HERSTMI2 evaluation of any WDB in consideration, and also an online Visual Contrast Screening (VCS) to check your symptoms and possibility of mold infection. You will receive a printable report to review with your physician and/or your Shoemaker Protocol Practitioner. It’s highly advantageous to have a Shoemaker Practitioner on your team when dealing with this complex illness.
2/ Diagnosis, minimum number of laboratory studies.
QUESTION: Our adult son has multiple complex health issues possibly related to his HLA DR and a mold exposure. His IgE is quite high and he has extreme eczema. What is the fewest number of test needed to confirm presence of CIRS?
ANSWER: Understanding that diagnosis of CIRS is a process involving much more than just laboratory testing, for those who have the potential for exposure and a multisystem, multisymptom illness, what we look for in laboratory studies includes HLA, MSH, TGF beta-1, C4a, MMP-9, VEGF and a T regulatory cell assay. I further will add ACTH/cortisol and ADH/osmolality if MSH is less than 35pg/ml.
Use of this testing should be done in close collaboration with your attending physician or with a Shoemaker Practitioner. Skipping steps in a complex case is never a good idea.
OVERVIEW OF THE SHOEMAKER DIAGNOSIS PROCESS
1/ Show that there has been exposure to water-damaged buildings with an ERMI and/or HERTSMI2 Tests
2/ Show presence of symptoms and visual contrast sensitivity deficits (please use the VCS online test on this website to accomplish this task quickly
3) You need to have a series of laboratory studies done to show that there has been adequate differential diagnosis performed and that no other explanation for your illness is found. No one test, lab, or medicine can diagnose or heal this complex multi-symptom illness.
There are 11 separate steps to the published, peer-reviewed Shoemaker Protocol. There are labs and testing at each step, used to improve the health of patients with a CIRS. Many people will have significant improvement with an early step using cholestyramine (CSM). Most will have more steps to go to deal with other abnormalities throughout their systems. The reason that there are 11 steps is because the illness is quite complex and has multi-symptoms throughout the body’s systems, and so one test or one medication alone can not adequately satisfy all physiologic impairments.
For further information on the Protocol Process you can get an overview in our Free Downloadable Guide, or you may be interested in reading Shoemaker Practitioner Protocol Essays, documenting the process in their voices.
3. Diagnosis, labs and testing process, in more detail
QUESTION: How can I be sure that I am suffering from mold illness based on my lab results showing mold susceptible HLA; MSH too low at 18; TGF slightly elevated at 2920 and normal VEGF? I was given hydrocortisone for a putative diagnosis of adrenal insufficiency and I have not been able to wean off.
ANSWER: The diagnosis of CIRS is based on satisfying multiple elements before we get to lab diagnosis. Specifically, we look for the potential for exposure; presence of typical symptoms as found in patients reported in peer-reviewed literature; positive Visual Contrast Screening, VCS, (showing a deficit) and differential diagnosis showing no other explanation. Lab findings typically will include (1) evidence of lack of regulation of inflammation in a given person with HLA susceptibility and (2) evidence of out of control inflammatory markers. Your labs are consistent with a diagnosis of CIRS; I would suggest looking for a deep nasal culture; C4a (not done at LabCorp); ADH and osmolality; and ACTH and cortisol. Given the apparent complexity of your case, these additional studies are not ones that can be skipped.
4. Diagnosis, ordering tests
QUESTION: I have what I believe is a possible biotoxin related illness. I am seeking assistance here in Oregon where my attending physician suggested urine mold testing. The physician does not have interest in pursuing well-established diagnostic and treatment protocols. May I order the tests myself?
ANSWER: Yes, a physician’s order is required to order laboratory testing. I would recommend you work directly with a Shoemaker Practitioner, or at minimum, find an attending physician who will work with the peer-reviewed, published, and proven, Protocol process. You or your physician may also be interested in my own phone consultation service. If you would like to first try and communicate with your current provider about the Protocol, here are a few talking points for consideration:
What will a putative urinary test for mycotoxins show?
Does the test show a multi-symptom illness or does it simply show what foods you have eaten?
Does it show location of exposure?
Does it distinguish between inhalation and ingestion?
Does the test show consistent results with repeated sampling?
Is the test affordable?
Does the testing and proposed interventions have documentation in peer-reviewed literature showing any benefit?
Then, if you proceed, be watchful for if you do or do not have before and after results that show benefit from these interventions.
If your physician feels the test is essential in the diagnostic process, please remember that exposure to mycotoxins is a trivially small part of the entire inflammatory processed involved with a CIRS diagnosis. There are various inflammagens to consider, creating multi-symptoms across multi-systems in the body.
