“The Ugly”— “Catch 22” Situations Where Diagnostics Come Too Late for Treatment

By Cesar Collado

I received a number of questions on last week’s post, so I wanted to provide some additional information on HLA-DR testing to clarify the several perspectives I presented in last week’s newsletter.  Because the severity of mold and mycotoxin illness is accompanied by a lengthy list and variety of symptoms, misdiagnosis is not uncommon. I have written about the many disease diagnoses of exclusion. (Exclusion means that all other diagnostics for an illness have been inconclusive). There is an abundance of literature on many of those conditions, such as Chronic Fatigue Syndrome, Fibromyalgia, Depression, Lyme Disease, and others. They symptoms mirror each other. (You can read about “History of Unexplained Chronic Illness” HERE.)  Similarly, getting a mold diagnosis is also extremely complicated and the burden often falls on the patients to find physicians who regularly identify, diagnose and treat mold illness.  Further, while HLA-DR diagnostics do provide a level of genetic information as to why certain people’s health is affected by mold toxins more than others, they are far from conclusive and still leave a lot of questions unanswered .

“The Good”

Everyone wants to understand the source of their illness.  It is an obvious point of both comfort and direction to get well and avoid getting worse.  Unfortunately, modern medicine continues to evolve as biological advancement continues on a variety of true unmet medical needs.  We cling to any explanation that improves our understanding of our disease and provide clues to find a path to wellness.

In my opinion, the HLA-DR provides a piece of information that is a game changer for many mold sufferers. I have written several articles about “The Debilitating Path of a Mold Illness” (Click HERE).  One of the most painful elements of mold illness is the lack of empathy (apathy) for the ill coming from their own families.

Often family members who are not affected by the mold, do not understand why you are so sick or why aren’t you getting better.  They may believe it is psychologically triggered and label you as “mentally ill” (depression) or psychosomatic (hypochondriac), or even lazy.  They do not agree with a mold diagnosis because they are not sick and breathe the same air. These often-overlooked hardships impact relationships, marriages, and build walls or resentment with people whose bodies seems to be failing them in so many ways.  Financial insecurity and stress about medical bills are common and may limit their ability to afford day-to-day life if they can no longer work.

In these cases, the HLA-DR diagnostic has the ability to explain to families why one person can be pre-disposed to mold illness, and another is not.  Many sources estimate that 1 in 4 people in the US are genetically predisposed (HLA-DR Positive).  This can explain the important fact that some people get sick while others do not.  That is an important piece of information, as the entire family suffers from a member being chronically ill.

“The Bad”

While anyone can Google HLA-DR testing or “mold gene” and get numerous blog posts and articles referencing the 1 in 4 prevalence, all seem to lead to a single source of information from the Surviving Mold website.  You may find a table that looks like this:

I am not alone with the experience of spending countless hours looking for a published study that explains the statistics behind this chart. I’ve chased down numerous references on websites to no avail. If you look at the figures, with 28% at multiple risk factors and 24.5% (the statistic referenced by many doctors) as susceptible, 56% of patients can get sick from mold.  This suggests that most people can get sick from mold.  That information isn’t that helpful from a practicality standpoint.

Dr. Neil Nathan, environmental illness thought leader and best-selling author of “Mold and Mycotoxins” and “Toxic: Heal Your Body” takes a different position on the topic. In “Mold and Mycotoxins,” he states

My personal experience, having evaluated hundreds of patients with this test, is that I have not noted much correlation between clinical improvement and this test. This means that those with the so called ‘dreaded’ genes have often done as well, or better, then those without those genes. Accordingly, I have not found this test to be useful in determining who will respond to treatment from those who won’t.”  (You can read a very insightful interview by Catherine from MoldFreeLiving.com blog  HERE.)”

To provide further understanding I will suggest looking at this kind of genetic predisposition information for an analogous disease, alcoholism.  In this example, there are countless research efforts, and it is commonly known that that alcoholism has a genetic component, resulting in individuals being predisposed to becoming alcoholics.  A conclusion cannot be found to suggest that everyone with this genetic make-up will become an alcoholic, though.  The alternative is also not conclusive: Can someone who does not have the genetic predisposition still become an alcoholic?  Evidence suggests that predisposition or not, excessively drinking alcohol is the only true diagnostic of alcoholism.

“& The Ugly”

The most unfortunate reality is that many patients suffer for years and even decades without finding the right doctor, diagnosis, or path to wellness.  Many continue to live in the same environment and accept whatever diagnosis or syndrome they have, never knowing that mold is causing their health issues.  This is a tragedy.

A relatively new syndrome that has been published about is Dampness and Mold Hypersensitivity Syndrome (DMSS).1.   What is most interesting to me is the criteria for diagnosis:

  1. History of mold exposure in water-damaged buildings with or without any symptoms.
  2. Increased morbidity due to infections. This is an early stage of the disease.
  3. Suffering the so-called sick building syndrome. That means that a person may feel unwell when entering a water-damaged building; but the symptoms relieve or disappear when being outside the problematic building from 1 to 2 days.
  4. Development of multiple chemical sensitivity.
  5. Increased scent sensitivity compared to his/her healthy stage. The patient may report ability to smell moldy odor, e.g., from clothes of a nearby standing person.

The unfortunate reality of this “Syndrome’s) diagnosis is that many of these criteria are not clinically measurable symptoms. Several of these are actually subjective environmental diagnostics for a medical disease.  A diagnosis of DMSS is tragic as the majority of the damage done by mold and mycotoxins has already happened.  When a patient presents with these criteria, it is often too late to change the progression of the chronic illness.  This is the catch 22!

A patient’s situation should never come to this.  These published cases are tragic because they divert medical emphasis from the core issue—mold—to the worst-case scenario and present a preventable and unacceptable outcome. This introduction to another new diagnosis, such as DMSS, exacerbates the mold issue as it is only recognized after it is too late.  For clarity, when mold is removed from the equation, almost all patients will improve their diagnosis.  However, when it takes the disease to be completely debilitating for physicians to recognize and probe the patient’s environment, that line of questioning comes too late. Taking mold off the table early in the diagnosis has so many benefits when you find a physician who knows who addresses mold to start.

What You Can Do!

It is never too late to start.  If you believe mold is the cause of your illness, you must address your environment and find the right physician.  These two steps are essential to finding the path to wellness.  Removing the immediate threat of mold will need to occur ASAP, regardless of whether you have found the right physician or not.  Further, if you find relief following any of these suggestions, you will have an important conclusive piece of information for you, your family, and your physicians.

Steps to Take to Safeguard Your “Mold Health,” Regardless of Your Genetics:

  • Test your home for mold. While not covered by health insurance, is a wise investment due to the relatively low cost and the impact the information can provide. Positive results can lead to identifying the source of mold, remediation, HVAC servicing, and air purification.  One or a combination of all are requirements to get better.  Continued mold and mycotoxin exposure will not allow the body to heal.
  • Identify environmental illness physicians in your area that treat mold and mycotoxin illness. These professionals understand mold and can help you find a path to wellness. The path to wellness requires holistic treatment of your body’s systems and includes supplements and a diet to starve fungi living and reproducing in your body.
  • Fog regularly with the EC3 SANI+TIZER fogger and EC3 Mold Solution Concentrate to reduce the fungal air count to near zero levels.Clean air is essential to healing.
  • Wash your clothes and bed linens with EC3 Laundry Additive since mold can follow you around.
  • BurnEC3 Air Purification Candles to remove mold spores and mycotoxins from your immediate air.
  • Help your bodies second line of defense against mold with Sinus Defense. Your first lines of defense are the skin, the sinuses and lungs, because they are your body’s natural HEPA filters. The immediate immune system is the function of white blood cells (T-cells, T-Helper Cells, and Cytotoxic “Killer” T-cells, and macrophages).  Sinus Defense is transfer factor similar to Transfer Factor or colostrum (bovine) capsules that can be purchased at a Nutritional store.  The difference is that Sinus defense is a fast absorbing sublingual spray, and it is specifically programmed to identify most common mold antigens and other antigens and infections that occur secondarily and are often ignited by mold antigens.  Transfer factor is cultivated to tag the antigens, so that they can be identified by your immediate immune system, destroyed, and removed efficiently from your system.  Learn more about Sinus Defense HERE.

 

1.    Valtonin, Ville. “Clinical Diagnosis of the Dampness and Mold Hypersensitivity Syndrome: Review of the Literature and Suggested Diagnostic Criteria”. Frontiers of Immunology” August 10, 2017

 

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About the Author:

Cesar Collado is a former pharmaceutical R&D executive, venture capitalist, and seasoned strategy consultant in biotechnology and technology industries in general. He currently works as an advisor to multiple technology start-ups and advises several companies that provide healthcare and other services for environmental illness. Read More

4 Comments

  1. Jacques prevert February 5, 2019 at 6:49 pm - Reply

    Are you saying that once we are cirs activated with hla-dr it is impossible to come back to your former self?

    • Cesar Collado February 12, 2019 at 10:43 pm - Reply

      CIRS is the result of severe exposure to mold and mycotoxins. FYI Technically, CIRS is a term coined by Dr. Ritchie Shoemaker. There are many doctors who treat mold and mycotoxin poisoning that call it other things. These patients have reached their toxic load and are very sensitive. Most patients with CIRS/ mold sensitive have positive HLA-DR (estimated to be 90%). However, if someone is HLA-dr positive, it doesn’t mean that they will get CIRS. It means they could be sensitive. The immune system is very complex with many chemical messengers acting when stimulated. They may not get CIRS if they avoid severe mold exposure and maintain good mold hygienist’s in their homes and eat well. People with a negative HLA-DR test can still get very sick if they have a severe exposure or mild exposure over time. In summary, the test is not conclusive. It provides some circumstantial evidence for the treating physician. I find it most helpful in explaining to family members living in the same home ; but they are not getting sick.

      I have seen many patients who were severely mold sick get better with the proper detox and diet. They will always have to avoid mold; but they can live normal lives if they breath clean air.

  2. Danny Gough February 5, 2019 at 12:27 pm - Reply

    Most excellent as usual Cesar. Is there an underlying theme here that suggests you can get sick from mold with or without the “dirty gene”? If so, then I am not sure why it matters. Dr Nathan’s book has a chapter talking about genetics and how sometimes a patient becomes depressed, loosing heart, when the HLA-DR test is positive. He also says seldom changes the treatment path.

    • Cesar Collado February 11, 2019 at 5:19 pm - Reply

      Thank you for your comment. You are correct in your statement. Anyone can get sick from mold and/or mycotoxin exposures. Many physicians do not use the diagnostic for this reason. It is helpful in explaining why one person in a home can get severely ill while others do not. While that is not diagnostic information, it is the cause if much anxiety and dysfunction on some households.

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