Mold and Mycotoxin, Illness Explained

Mold Testing Mold Remediation

By Cesar Collado

Perhaps the biggest challenge in writing about mold and mycotoxin contamination and illness associated with water damaged or moldy homes is enabling the patient to reach a common understanding of the illness with their spouses or partners.  Unless this is accomplished, misaligned beliefs can foster disputes, disbelief, and challenge faith in the relationship.  Some of the hurdles include:

  • The absence of the illness in other members of the family living in the same home;
  • The inability for trusted physicians to provide a clear diagnosis;
  • The need for concrete evidence of the illness;
  • Intolerance and resentment due to the chronic presentation of the illness and dips and peaks in its severity;
  • Frustration with the affected person’s inability to perform duties to the family and home or ability to generate an income;
  • Confusion and anger associated with the high cost of reparations needed in the home in addition to medical, nutritional, and supplement costs that may not be reimbursed by insurance the same as most other illness;
  • The fact that clear, finite estimates of costs and timelines for “curing” the illness don’t readily exist;
  • Loss of ego and pride associated with the selection or building of the home that is “moldy;”
  • Financial panic that ensues when there seems to be no end in sight of medical and environmental remediation bills.

Of all of these, it is my opinion that the most damaging element to relationships comes with the resentment and disbelief from the “well partner” that the illness is either not real or a pseudo-diagnosis that the patient is psychosomatic, depressed, “lazy,” or “crazy.” This seems to further demoralize and weaken a patient’s resolve to get to the root of their symptoms and to do what it takes to heal. When you realize this, the sobering reality that the patient will not get better if they remain in these moldy homes really hits home.  Further, mold and mycotoxin illness have been linked not only to respiratory illnesses, but cancers, organ failure, neuropsychiatric illness, and death. Thus, even the “well partner” is in danger if he/she continues to live in a toxic environment, and no one wins in the end.

In my opinion, mold and mycotoxin illness should be met with the same urgency of asbestos, lead paint, or contaminated water in the home. Fixing the home should be a top priority because not doing anything could have dire consequences for its inhabitants.  Cleaning and removing the mold should have the same vigilance as if lice contaminated your home and bodies.

In order to contribute in some positive way to this difficult situation, I thought I would write a “letter to the spouses” from the perspective of the mold sufferer that might frame or explain the issues clearly. This is simply a starting point to educate partners or spouses of the malady and some of the dangers inherent with living in a moldy home.

 

Dear Family,

It is understandable that it may be difficult for you to fully understand or “get a grip” of the nuances of my medical condition and why there is such a need for us to live in a home with safe air to breathe. My hope is that this letter will communicate my position clearly for the need to take action to identify and fix the cause of my mold illness and to explain the future risks of not taking action.

I completely realize the fact that mold is everywhere and has been here since the beginning of time. Humans have also been living with and around mold for a very long time. So, it may seem strange that I seem to be suddenly plagued by the presence of mold in a way that that doesn’t make sense or that seems out-of-proportion. The best I can do to bring you closer to understanding why mold is now affecting me on such as level as to produce chronic illness and debilitating symptoms is to say that what I am dealing with right now is my body’s inability to deal with the toxic substrates of some molds that tend to grow in indoor environments that have either had water damage or have consistently elevated humidity levels. The volatile organic compounds emitted by mold are called mycotoxins. When outside and less concentrated, these mycotoxins don’t seem to cause as many health issues, but, unfortunately, several of these species are commonly found indoors, especially in water damaged homes. These species have been found at elevated levels inside our home.  

Why? There are many reasons for mold to form indoors, but it seems to be from a combination of the materials used to build homes now–gypsum and paper made drywall absorbs moisture and provides a breeding ground for mold and retain mycotoxins—and how we build our homes—air-tight and energy efficient, so all of the VOCs are trapped and circulated throughout a home once they are present. Just “killing” the mold is not enough, though. Mycotoxins are documented poisons that can cause cancer and other debilitating illnesses.  Dried or dormant mold or mycotoxin fragments can be as dangerous as living mold.  It must be removed properly and cleaned to eliminate the risks.  Professionals do so by removing the drywall under strict safety guidelines, containment, careful cleaning with appropriate materials, and negative air pressure to avoid contaminating the home further or risk it contaminates the home ventilation system (HVAC).  When this happens, the entire home and all of its furnishings and belongings can become dangerous.    

MOLD ILLNESS IS A REAL AND ACKNOWLEDGED PROBLEM

In fact, the Center of Disease Control (CDC) had its first Fungal awareness week in August 2016 with the principle message to patients and physicians: “Think Fungus,” if you have symptoms that don’t get better with treatment.  Talk to your doctor about the possibility of fungal infections.” There is actually quite a bit of useful information on their website about causes, symptoms, and solutions. There are even remediation links that are very helpful. I encourage you to check it out because it offers scientifically-backed, well-researched, unbiased information.

 According to the CDC website, the most alarming symptom of fungal exposure is cognitive dysfunction due to mycotoxin inhalation. I am experiencing this, and it is very scary. The neuropsychological symptoms are similar to those associated with traumatic brain injury.  In addition, exposure to mycotoxins has demonstrated positive associations with asthma, wheezing, and bronchitis, as well as fatigue, musculoskeletal pain, headaches, anxiety, mood disorders, cognitive impairments, and depression. I am also under a tremendous amount of stress, because of the financial toll on our family and because of how my being ill is affecting our relationships and quality of life. I feel responsible and guilty.

IS MOLD ILLNESS JUST A MYTH EXACERBATED BY THE MEDIA?

Water Damaged Homes Mold Remediation

There have been many news articles about mold illness in recent times. Mold illness has been around since biblical times. It has only been studied closely over the past 15 years.  The reason for this is that cases of mold illness have gone undiagnosed for years.  This is because they have presented themselves to physicians randomly and the symptoms are similar to many chronic illnesses. It has only been since major catastrophic events like Hurricanes Katrina, Sandy and others have presented large populations suffering from water damaged homes.  The concentration and high populations suffering have provided valuable data for researchers to publish that haven’t been available in the past.  

WHY AM I AFFECTED AND YOU ARE NOT?

Mold inhalation or digestion causes an immediate inflammatory response in about 25% of the population. This is because a gene for biotoxin (aka mold) susceptibility has been identified. This is also well-documented in scientific literature. I have that gene, so for me, continuous inhalation of mold spores can cause chronic systemic inflammation. This is why I am always feeling sick (malaise) and constantly tired (chronic fatigue) While I have many acute physical symptoms, long-term chronic inflammation has been linked to heart disease, stroke, autoimmune diseases, gut diseases, cancer, neurological disease, and hormonal disruption. So, in addition to the detrimental effects produced by mycotoxins that are affecting everyone in our home,  I am also dealing with this inflammatory response.

LET’S JUST INVESTIGATE OUR HOME

While the lack of understanding of a medical condition may be understandable, ignoring the need to investigate our home for mold is not. It is easy, affordable, and inexcusable when someone in the household is chronically ill.  Physicians acknowledge that a mold or mycotoxin patient will not get well through medicine, medical procedures, or hospitalization if they remain in a contaminated environment. In addition, the contamination will eventually impact others in the home environment, even if it is a low level, slow accumulation of mold and mycotoxins in the system.  This is especially true with a compromised immune system or children and elderly. 

While some people will view getting a licensed and certified mold inspector as cost prohibitive, the human and financial costs over the long term will dwarf the expense.  There are a variety of things that can be done to investigate the home at little or no costs: 

  • We can take a free online evaluation together HERE to capture relevant information about my sickness and our home to examine the results
  • We can inspect for leaks, water damage, moisture, and mold. This takes little time and can easily identify problem areas that must be fixed. You can read about how to inspect a home HERE.  Cost is free.
  • We can use mold test plates to determine if there are dangerous levels of mold. These inexpensive, specially-designed Petri dishes take almost no time to test and days to see the results.  You can purchase EC3 Mold Screening Test Kits to get a simple yes or no.  These tests should be used to test all around the home, crawlspace, attic, basements, and carpets.
  • If mold is identified, we can test again with a Diagnostic Mold Test Kits by Immunolytics to be able to attain a lab diagnostic to identify the mold species present. Many mold remediators seldom test for the type of mold; however, knowing the species can provide important information as mycotoxin-producing species will provide clues for physicians as well as remediation approach when considered with patient symptoms. Cost $45-158 for 5 test kits.
  • We can then add mycotoxin testing of environmental dust to provide conclusive evidence of mycotoxins in the home. At this point, a serious mold issue is a concern. Directions are provided to collect the correct samples of dust and potential inhalants. Cost: $300-400 per sample.

THE MEDICAL DIAGNOSTICS ARE NEEDED

While medicine advances, the ability to definitively detect and diagnose mold illness is still early in its evolution. Existing diagnostics can provide important circumstantial evidence of mold allergy, the presence of mycotoxins, and my genetic predisposition to this illness. Here is a little more information about some of this testing:

  • Mold Allergy Testing – When a foreign antigen enters the body, the body responds by deploying immunoglobulins.  Proteins present in the serum and cells of the immune system function as antibodies.  These antibodies can be detected by testing the blood for them.  An IgG blood test will identify the number of antibodies present for allergens and several common molds.  Positive tests for these antibodies are indicative of tissue destructive reaction with immune system rupturing,  causing the pitting in mucosa.
  • Mycotoxin testing is a very important consideration if someone is chronically ill with neurological/cognitive symptoms or other serious body system functions. Mycotoxins have been linked to cancer, organ failure, neuropsychiatric illness and Alzheimer’s and several others.  Patients suffering from mycotoxin poisoning may experience the same level of misery as patients diagnosed with the most serious diseases such as cancer, rheumatoid arthritis, Crohn’s Disease Parkinson’s, and Alzheimer’s. Mycotoxin testing in urine is conclusive evidence that the patient is in a dangerous environment.  In this case, the mycotoxins have been absorbed, metabolized, and excreted through the organ systems.  The test will only measure what is excreted, this may not capture mycotoxins being absorbed in fat, joints, and tissues. Cost approximately $300. If mycotoxins are found, detoxification under medical supervision is critical.  However, they may not capture mycotoxins in the brain as the brain clears its toxins via cerebral spinal system while sleeping through the glymphatic system.  This is more common than one would realize since most mycotoxins enter the body through the sinuses adjacent to the blood-brain barrier. 
  • Genetic Testing – It is estimated that 1 out of 4 people in the US have a genetic predisposition to mold sensitivity. HLA-DR, “The Mold Gene”.  When a patient is severely ill, HLA DR testing is positive in over 90% of these patients.  This limits the utility for this diagnostic which can be expensive.  However, it provides an explanation of why one person in a home can get severely ill with mold and mycotoxins, while others remain healthy.  For the overly skeptic, this test can provide a conclusive understanding of the test is administered to people in the household who are not severely ill to explain the differences amongst family members.

ABOUT MOLD REMEDIATION FOR CHRONICALLY ILL

Remediating mold and mycotoxins can be done by a DIYer on a small scale if identified in a specific area and proper safety precautions are taken. Larger jobs should be done by a licensed mold remediator.  In the case where a person is severely ill, employing an expert is likely a necessity.  In these cases, the mold and mycotoxins must be carefully removed and appropriately cleaned.  Chemical solutions to kill mold will not address the chemical mycotoxins and remaining fragments. Learn about the  Importance of bau-biologists and indoor air quality experts and the importance of hiring someone who understands environmental illness disease physiology and the ability to speak to your physician.

IN SUMMARY

Mold and Mycotoxin illness is very real and a path to wellness is possible. In other words, this isn’t forever, if we do the right things. While treatment of the illness may fall outside of traditional insurance coverage, there are physicians who specialize in treating environmental illness.  The most important component is to immediately get out of the exposure causing the illness and to be careful about not taking items from the contaminated environment until they are properly cleaned.  Then, taking steps to properly detox and to remove the mold toxins and rebuild my immune, digestive, and pituitary systems must be addressed under the care of a mold-literate doctor. I want to start healing with your help and support. I realize that skepticism and frugal living are successful strategies to survive economically, but, when it comes to environmental illness, it is possible to be “penny smart and pound foolish.”  The human costs (pain and suffering), opportunity costs of (inability to work), financial costs (medical expenses), risks to children, and relationship costs will remain very high!

Sincerely,

Your Mold-Suffering Family Member

If you would like to share your story or ask a question, please comment on this post.  For personal question, you can email them to me at Cesarcollado@icloud.com.

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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

7 Comments

  1. Erik Johnson May 26, 2019 at 4:10 pm - Reply

    Excellent article.

    As told in Dr Shoemaker’s books Mold Warriors and Surviving Mold, it is documented that toxic mold is actually what
    the famous 1988 Holmes “Chronic Fatigue Syndrome” was coined to solve.

    Many in the mold community know about it.
    About the only people who remain unaware, ironically, are “CFS researchers”

    ———————————————————————————————————

    Mold Warriors by Dr Ritchie Shoemaker
    Gateway Press 2005

    Chapt. 23
    Mold at Ground Zero for CFS

    The history of Chronic Fatigue Syndrome (CFS) begins in Incline Village, Nevada in 1985. In the medical history of CFS, each of the concepts applies–failed theories and failed criticism.
    One victim, Erik Johnson, told everyone who would listen that mold was a cause of CFS. He came up with his theory at the wrong time in the politics of medical opinion, as a unknown viral cause was blamed instead. Johnson tried repeatedly to get the attention of leading CFS researchers then and now to look at what he knew about mold sensitivity. None of the heralded CFS researchers would listen.

    Johnson tried to tell all that mold avoidance helped him return to a normal life after repeated bouts with mold illness. No one in an authoritative role listened.

    We now know the mold connection to CFS is incredibly strong. The resistance to that idea is also incredibly strong, as the longstanding idea about CFS said often enough and loud enough and supported by the CDC, are believed by many, And if there’s a tragedy of the CFS story, it’s that Erik was right from the start. No one listened.

    Mold hurts us. Until now, few have listened.

    • Cesar Collado May 27, 2019 at 4:18 am - Reply

      Thank you for sharing this. These comments help many people!

  2. Deanna Tuinhof May 23, 2019 at 8:50 pm - Reply

    Thank you Cesar for being our advocate. Your article is once again, incredibly timely as my in-laws just told me three days ago that everything my husband and i are going through (pertaining to my mold-related illness) is MY FAULT. They proceeded to tell me that my husband needs a “normal wife” and a “normal life” It was incredibly painful to hear. Reading your article was validating for me and much appreciated. I noticed however, that you didn’t write anything about chemical sensitivities and how/why they’re associated with mold/mycotoxin illnesses. Would you mind focusing on this topic in one of upcoming articles?
    Thanks,
    Deanna :)

    • Cesar Collado May 24, 2019 at 3:49 am - Reply

      Thank you for sharing. I will be glad to in the next couple weeks.

  3. Kelly Bishop-Fulton May 23, 2019 at 2:13 pm - Reply

    Thank you for writing this. It is spot on. We have been living this nightmare for 2 years. Four of our 5 kids are sick from the mold in our home. The expenses we have faced from this are never-ending. We have done testing, remediation and the medical testing too. Our kids live in a tent in the backyard. They are all getting better through treatments to detox and are seeing a functional medicine doctor to help us survive this terrible illness. The mold illness has presented itself differently in each one of us. We are planning to sell the house and move to Mexico where the homes are constructed with concrete and tile and the windows can be open year round without ever using an HVAC system that blows spores throughout the entire living space of our family. We live in Ohio. My husband and I are both doing ok in the home – except that I am certain is has caused him severe brain fog. We both acknowledge its affect on our entire family and he has worked so hard to try to get us out of this mess. It is extremely hard on our relationship as we never seem to make progress. I can only imagine having this illness and having my partner not believe in its power to destroy. We do have lots of friends and family members that do not understand this battle we have been fighting. And so many medical professionals that missed it and do not believe in this diagnosis. They are no longer our doctors. We just kept searching for someone who could tell us the TRUTH about why we were all so ill. It is terrible to see your children sick for so long and even get to the point of them not being able to walk. I believe we will make it to a better place and we are set to sell and leave EVERYTHING we have behind for fear of contaminating our new space with the mold in our belongings. I have purchased the products from MicroBalance and us them for our laundry and cleaning, as well as the candles for the air. But I have to tell you….. I am so scared I will take the spores with us that I am not confident I can bring anything we have. Can you comment on this please? Can anything REALLY be SAFELY saved? The LAST thing I want to do is take this problem with us when we go. Thanks in advance for your reply. I appreciate what you are doing to educate the world on mold and mycotoxins.

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