Week of May 20, 2024
1/ Pre-CIRS state, a physician writes:
Q: I note that in medical conditions such as type 2-diabetes and hypertension there is discussion of an abnormal presentation that appears before the full expression of the disease. We hear terms like pre-diabetic and borderline hypertension often. Is there a pre-CIRS state?
A: As in my practice, there are patients with multiple system, multiple symptom illnesses and mold exposure who still are able to pass the VCS test and do not have a full blown group of abnormalities and labs. Or, you could say they have some of, or less than, the “full blown” abnormalities and lab levels required for a CIRS diagnosis. Over the years establishing what is the time course of conversion from HLA-based susceptibility and exposure to mold to presence of a CIRS has been a complex research effort.
For those with less than the full syndrome, such as what you described, it is likely that HLA will not be mold susceptible. They will not have the genetic variation. Secondly, there is clear evidence that as long as MSH and VIP levels are both normal, the full-blown syndrome does not develop despite exposure. In these patients, while we don’t use “pre-CIRS,” frequent (every three months
would be fine) testing of C4a and TGF beta-2 makes sense.
2/ Basis of CIRS
Q: General speaking, what causes symptoms? Is it ones’ inability to clear toxins or is it ones’ own immune system fighting itself that causes symptoms?
A: This remains one of the fundamental questions we deal with every day. There is no question but that use of our online visual contrast sensitivity (VCS) testing helps us to verify whether or not there still is direct effect of biotoxins. If visual contrast sensitivity is normal or corrected back to normal and symptoms persist, then we are looking at abnormalities of innate immune response alone as a source of symptoms.
Here is where our work with genomics is pertinent. We have identified a variety of genes that are inappropriately activated and others that are inappropriately suppressed in patients who have been treated adequately with the initial phases of the biotoxin pathway treatment protocol. Symptoms, therefore, are initiated by exposure as changes in the genomic basis for the illness are initiated.
With use of VIP as the final step in the treatment protocol, we are looking at restoration of normal regulation of innate immune responses with reduction of symptoms to the point that we are considering using the “cure” word for patients at this time.
3/ CIRS with osteoporosis, bone issues, and elective surgery
Q: A physician writes, I have a 56 year-old patient who is facing a repeat total hip replacement. Her mobility continues to decline despite multiple attempts at improving her quality of life. She has a TGF beta-1 of 12,000. Is the elevated TGF beta-1 associated with her ongoing bone problems?
A: TGF beta-1 plays a dual role in just about every organ system in the body including bone. We would like to know whether or not there are elevated levels of retinoic acid orphan receptor in bone to assess more carefully the role of TGF beta-1 in this case. As that assay is not even available on a research basis, all I can suggest is to treat the TGF beta-1 aggressively using the 11-step Shoemaker Protocol™ and then assess changes in bone density.
We know that osteoporosis remains an inflammatory illness with multiple variables contributing to increased activity of osteoclast activating factor. There is also evidence of suppression of osteoblast activity. This combination of increased bone resorption and
decreased bone formation is a prescription for loss of bone density.
The literature is scanty but I suspect what we are looking at here is series of abnormalities of Th17/T reg imbalance promoting tissue based inflammatory responses.
The T reg assay performed by Quest Nichols in Chantilly, Virginia is researching performance of the test using an upgraded national code to make it easier to obtain.
4/ CIRS diagnosis in Argentina
Q: My father in law has symptoms that have defied diagnosis that resemble MS or Parkinson’s disease. He is a physician but no tests have been definitively confirmed what is wrong with him. He lives in a house that has had water leaks for years. There is visible mold and musty smells.
A: Diagnosis of CIRS is made by confirming the potential for exposure to a water-damaged building, which your history says has been completed. Next, there must be presence of a multi-system, multi-symptom illness similar to that which has been shown in peer-reviewed published literature. You did not include a list of the symptoms but it is possible that such an illness is present. To check your symptoms, you can access a symptom checker and initial diagnostic steps in the Shoemaker Protocol™ Quick Start guide.
Finally, lab abnormalities in your father-in-law will need to
be shown to be similar to those in peer-reviewed published studies. If you find CIRS susceptibility, and a fail on the online Visual Contrast Sensitivity test, it becomes time to continue the Shoemaker Protocol™ diagnostic pathway, and look for the lab abnormalities that are present in cases compared to controls. That grouping of lab abnormalities is represented by the physician’s order sheet found in the Physician’s Resources section of this website. The labs are confirmatory. Finding a Shoemaker Protocol™ trained practitioner is recommended to effectively manage or oversee your case through this complex multi-symptom/system illness. Yet, as you are in another country, it will be helpful to include your attending physician or specialist from your country to aid with various specifics such as accessing the necessary medications and tests.
You may also be interested in Question #8 below for more information.
5/ CIRS in an organ transplant patient
Q: A physician writes, I have a renal transplant patient who may have CIRS. What special precautions do I need to take?
A: The same diagnostic protocol for CIRS that is done in people without renal transplants is done in those with immune suppression. Cholestyramine is not absorbed and such will have no adverse affect on medicines given to renal transplant patients provided the drugs
are not dosed at the same time. Please see the cholestyramine treatment module on this website.
There are a variety of inflammatory mediators that can be accentuated in patients who have had renal transplants. Before jumping into treatment before cholestyramine it would be reasonable to discuss the issue with the renal transplant physician, particularly if
elevated TGF beta-1 is found.
6/ CIRS, medical community acceptance
Q: My question could be considered more political than medical. Given the incontrovertible evidence that you helped create in existence of illness acquired following exposure to interior environments of water-damaged buildings, how long will it take to be accepted by the medical community?
A: The term “medical community” has been defined very differently from one courtroom to another. Medical community could include all health care practitioners or it could be
defined as those providers working in the field. If we say the medical community for WDB is the community of treating physicians, then we have near universal acceptance. If we start to include toxicologists and allergists, practitioners possibly with no basic clue about CIRS, then “general” acceptance is reduced. If we add pulmonologists and
neurologists who have never identified anyone with CIRS, but because their field of specialization might include an organ involved in CIRS, then acceptance is even less. So to answer your question, we must have education of the general medical community such
that the pediatrician and gynecologist will know something about CIRS, just like the dermatologist and proctologist.
The presence of high level publications from the World Health Organization and from the U.S. GAO, together with the thousands of papers referenced on PubMed (TGF beta-1 has over 70,000 alone) says the acceptance of CIRS in academic circles is here. Whether a
med school chooses to teach students something that could affect 25% of the world’s population is a separate issue. I can remember that at Duke Med School from 1973-1977 about 10 minutes of teaching time was devoted to toxicology and zero minutes devoted to
exposures to biotoxins. Certainly the goal of working through legal communities to introduce CIRS is far ahead of working through medical communities. With over 45 decisions (Frye and Daubert
admissibility issues) agreeing that CIRS is generally accepted, but nine decisions not agreeing (testimony not accepted), we still have some work to do.
Sadly, continuing education for physicians, a condition for re-licensure, often is sullied by external factors. Frankly, some docs just don’t read much about what is new in inflammation, despite its ubiquitous presence in medical journals. What will the average
gynecologist, pediatrician or family doc do for the required CME? Audio-Digest is a huge provider of CME. They tape lectures by physicians and then offer tests to listeners which count as CME to see what they know about a given subject after the talk. CME
used to be granted for reading or publishing, but no longer. But cynically, does anyone think that the how about the CME courses given in tropical resorts or on a cruise with mornings devoted to several lectures and afternoons to golf, buffets and bars is the same
as writing a peer reviewed paper? CME can mean a tax write off for a nice vacation. But publishing a paper means no CME. Until the approach to CME changes, there may be some delays in getting physicians interested to read more than what they learned in
medical school.
Finally, let’s face it: some medical schools are making lots of money by controlling what goes on in their class rooms. Will alumni contributions increase by being controversial? I offered a short course at Duke on CIRS several years ago. I was told by one contact that
the subject was too hot to handle. Maybe later. Or maybe never.
7/ CIRS, mold in blood stream
Q: We found black mold in our home. How long will it remain in our blood stream?
A: There never has been any convincing data presented showing that individuals with inflammatory response syndromes have ongoing carriage of fungi in blood. The problem is inflammation that is initiated by exposure to antigens found in a water-damaged building in which fungi are a small cohort.
Blood work should focus on inflammatory responses to C4a, TGF beta-1 and MMP-9 and regulatory neuropeptides to get started.
The Practioner’s Lab Order Sheet accessible on this site includes the Shoemaker Protocol™ roster of lab tests required for CIRS/mold illness diagnosis and treatment.
Other considerations are determining if you are in fact adversely ffected by the mold, and if you have the HLA/gene susceptibility that can lead to a full-blown case of CIRS. If you have “the dreaded gene” the offending biotoxins and bacterias are typically not released from the body by natural processes and functions. If you do not have the gene, your body may very will naturally process and release the biotoxins.
You can get started with diagnosis with the Shoemaker Protocol™ Quick Start Guide.
8/ CIRS, protocols in Norway
Q: I am having trouble finding a physician in Norway to continue treating me with cholestyramine and now doxycycline. I am improved significantly with both. How could I convince Norwegian health authorities that the protocols make sense?
A: There is no governmental agency in the U.S. that approves protocols so I can’t send you government approval of cholestyramine.
I would recommend that you submit the World Health Organization report to the Norwegian health authorities together with the Expert
Treating Physician Consensus Report of 2010 to those authorities as well.
If you do some digging, it’s possible that there are specialists who are familiar with the Shoemaker Protocol™ in your country. While Shoemaker Protocol™ trained practitioners are not yet in every country, the Protocol has an expanded network of influence. At one time Dr. DeMeilier was working with Dr. Metta Johnsgaard in Norway. Later Dr. Johnsgaard was working independently with patients with CFS, Lyme and mold. I would suggest that your physician reach out to a physician in Norway who has used elements of my protocols or the complete protocols, of course.
You can also refer your physician to the many Practitioner Resources on this site, or you or your physician may be interested in Dr. Shoemaker’s telephone consult service .
