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Mycotoxin Illness - One Patient’s Story



As discussed in my previous blog, Mycotoxin Illness is not something I learned about in medical school and something that I was initially hesitant to explore with patients. Yet as is often the case when you have a medical practice like mine, you tend to see patients with multiple symptoms who have consulted with multiple providers and have not been given an explanation, diagnosis, or clear treatment plan.

Through years of working with such patients, I have become much more knowledgeable of and comfortable with treating conditions that are often dismissed by traditional Western Medicine. Mycotoxin Illness is one such condition.

In today’s blog, I am presenting the story of one patient recently diagnosed and treated for Mycotoxin Illness.

INITIAL VISIT
I first met Kathy* in August 2020. During our first visit, Kathy described symptoms that began in 2016 during a time of elevated emotional stress, life transition, and a move into a new apartment.

Her symptoms had increased over the past 4-5 years and included:

  • Chronic cough
  • A burning sensation over her chest
  • Chronic itching (head, arms, under breasts)
  • Redness of her eyes
  • Bone and joint aches, including significant pain in wrists and elbows
  • Overwhelming fatigue and brain fog
  • Night-time anxiety, often waking up feeling panicked and hot

Kathy had sought help from multiple physicians prior to our consultation including her primary care provider, two rheumatologists, an allergy specialist, and even a trip to the Mayo Clinic! Despite numerous laboratory and diagnostic tests, she was not provided with a clear diagnosis or explanation for her symptoms.

“I’ve had doctors tell me that it’s all in my head"
Kathy explained during that first visit as she described her symptoms and we discussed her past medical history. She was frustrated and visibly exhausted. Through questioning, I learned that she had been living in her current apartment for three years and had to run dehumidifiers continuously due to wet carpet.

I initiated a comprehensive laboratory workup, evaluating:

  • nutrient status
  • hormone levels
  • markers of underlying inflammation and immune system dysfunction
  • markers of underlying infection (Epstein-Barr virus, yeast, Lyme, mycoplasma)
  • urine mycotoxin testing

Mycotoxins are toxins that are released into the air from mold. Mold can grow in any wet/damp environment. In genetically susceptible individuals, mycotoxins can cause widespread inflammation, dysfunction, and tissue damage. Mycotoxins are very small and not easily detected in the blood, therefore I utilize urine mycotoxin testing when I have a strong suspicion of Mycotoxin Illness.


SECOND VISIT
Kathy and I met one month later in September 2020 to review the results of her laboratory workup, which revealed:

  • nutrient deficiencies (deficient omega-3 fats and vitamins A, D, and B12 and suboptimal glutathione and CoQ10)
  • indicators of bacteria and yeast overgrowth in the gut
  • markers of adrenal dysfunction
  • three species of elevated urine mycotoxins, including one level “off the charts” - Zearalenone

Zearalenone (ZEA) is a mycotoxin that has been shown to damage liver cells, bone marrow production, and the immune system.  Exposure to ZEA is mostly through water-damaged buildings.


I outlined a treatment plan for Kathy, which included:

  • targeted nutraceuticals to replace deficiencies (Vitamins A, D, and B12, CoQ10, and fish oil)
  • probiotics, L-glutamine, and Immunoglobulin powder for her gut
  • herbal adrenal support

We had a lengthy discussion regarding the likely role of mycotoxins in her various symptoms and the fact that her current living situation was negatively impacting her health. I encouraged her to find a way to remove herself from her apartment for a minimum two-week period to assess for change in symptoms.

A treatment protocol was outlined to address Mycotoxin Illness directly, including:

  • Intestinal binders to trap mycotoxins and prevent reabsorption
  • Supplemental Glutathione to enhance mycotoxin removal from the body
  • Adequate hydration, regular sweating, and support for regular bowel movements

 
FOUR MONTHS LATER
Kathy and I did not meet again until four months later. Rather than a two-week trial away from her apartment, Kathy had decided to immediately vacate the apartment and had moved to a new city. She had implemented all of the therapies outlined above and described her response


"It's amazing. I'm not napping all of the time anymore. I have the energy to get through the day without a nap. My bones no longer ache. My skin doesn't itch and my eyes are clear. I haven't felt this good in over four years!"

After initiating gut support, her cough had significantly improved, almost immediately. Other symptoms continued to improve and resolve. By the time we met:

  • she no longer had pain in her wrists and elbows
  • her energy had dramatically improved  
  • her memory and brain fog had significantly improved
  • her skin no longer itched
  • her eyes had cleared

I look forward to seeing how Kathy continues to improve over the coming year!

Since the onset of the COVID-19 pandemic in March 2020, many of us have been spending far more time in our homes than we had in the past. Not surprising, then, that I have seen an uptake in Mycotoxin Illness over the past year. Even Kathy noted that her symptoms had worsened with the onset of the pandemic and more time in her apartment.

This is just one patient’s story, but it is consistent with what I have been seeing in my practice over the past several years. While the response to treatment varies per individual, I have been amazed by the rapid and significant improvement in symptoms witnessed in those diagnosed and treated for Mycotoxin Illness. For those who have developed Chronic Inflammatory Response Syndrome (CIRS), testing and treatment protocols are often more complex.

You can learn more about Mycotoxin Illness in my previous blog What you need to know about Mold & Mycotoxin Illness.

Concerned that you may be experiencing symptoms related to mold exposure?  Contact our office to schedule an appointment!  231-638-5585



*This patient has read and approved this blog, however, her name has been changed to maintain privacy/patient confidentiality.



Carin Nielsen, MD Integrative Medicine I use an Integrative/Functional Medicine approach with my patients to treat a variety of chronic medical conditions. During the COVID-19 pandemic I continue to see both new and returning patients using our secure, easy video-visit format. If you are interested in learning more or if you would like to schedule a consultation, please contact our office This email address is being protected from spambots. You need JavaScript enabled to view it. or 231-638-5585.

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What you need to know about Mold & Mycotoxin Illness

 Mycotoxin Illness is not something I learned about in medical school. In fact, even in my early years of practicing Integrative and Functional Medicine, I was reluctant to explore the concept of Mycotoxin Illness with my patients. Similar to conditions like Lyme disease (which I also now treat frequently), Mycotoxin Illness seemed “taboo” and dismissed by traditional Western Medicine.

Yet as is often the case when you have a medical practice like mine, you tend to see patients with multiple symptoms who have consulted with multiple providers and have not been given an explanation, diagnosis or clear treatment plan.

I was not looking to treat Mycotoxins…they came and found me!

WHAT ARE MYCOTOXINS?
Mold is a fungus that can grow in any wet environment. Mycotoxins are very small toxins that are released from mold into the air. Mycotoxins are considered as a type of Biotoxin - and can cause injury to and dysfunction of multiple organs and systems, including the:

  • Respiratory system
  • Immune system
  • Neurological system
  • Hematological (blood) system

Mycotoxins are tricky! They are difficult to detect in your blood. They are very small and can move into and out of your cells with ease. Mycotoxins are secreted by the liver into bile and can be reabsorbed back into the body unless “tagged: by your immune system for removal.

GENETICS PLAY A BIG ROLE IN MYCOTOXIN ILLNESS
In genetically susceptible individuals, the immune system is unable to “tag” mycotoxins for removal, and they are resorbed back into the body. This may lead to chronic stimulation of the immune system, and in some, to the development of Chronic Inflammatory Response Syndrome (CIRS) that causes injury and dysfunction throughout the body.

Certain gene variants can make you more likely to develop Mycotoxin Illness. These gene variants are associated with poor clearance of mycotoxins and increased inflammation and tissue damage.

This is why four people can be living in a water-damaged home, yet only one is significantly ill! Only those with certain gene variants are likely to be affected.

WHO IS AT RISK FOR MYCOTOXIN ILLNESS?
For those who are genetically susceptible, any mycotoxin exposure is a potential risk. Suspicion is raised for those who live or work in a building that has a history of flood or known water damage, leaks or a damp basement.

Buildings with flat roofs are more at risk. Signs of water intrusion may include a musty odor, condensation on windows, discoloration of vents or ceiling tiles and/or a need to constantly run dehumidifiers.

SYMPTOMS OF MYCOTOXIN ILLNESS
Symptoms of Mycotoxin Illness may vary from person to person. Individuals will also vary in how severe symptoms are in relation to the degree of mold to which they are exposed.

A key feature in Mycotoxin Illness if the onset of symptoms after a move or job change.

I use the following bullet-points when evaluating the possibility of Mycotoxin illness in my patients. For adults, symptoms in 8/13 bullet-points raises high suspicion.

  • Fatigue
  • Cough, increased thirst, confusion
  • Appetite swings, body temperature dysregulation, urinary frequency/urgency
  • Memory changes, problem finding words
  • Weakness, achiness, headaches, difficult new knowledge assimilation, light sensitivity
  • Concentration problems
  • Joint pain, morning stiffness, muscle cramps
  • Red eyes, blurred vision, excessive sweating or night sweats, mood swings, unusual pain (especially sharp stabbing “icepick” pain)
  • Abdominal tenderness or pain, diarrhea/loose stools
  • Unusual skin sensations, tingling, numbness
  • Eyes tearing up, disorientation, metallic taste in mouth
  • Shortness of breath, sinus congestion or nasal drainage
  • Vertigo, static electric shocks

TESTING FOR MYCOTOXINS
I test for mycotoxins in patient’s urine, most often using Great Plains Laboratory Urine Mycotoxin kit. Cyrex Labs offers mycotoxin blood antibody testing that can be very helpful, however the cost of these tests for some is prohibitive (over $500) and they are often not covered by insurance.

TREATING MYCOTOXIN ILLNESS
Treating Mycotoxin Illness begins with a first, most important step - the patient needs to be removed from the mycotoxin exposure. This is generally the most difficult part of the process. If the exposure if through a work place there may be fear of job loss. One’s home is typically one of their most important life investments, and the decision to sell or leave is often difficult. In addition, mold remediation/clean up can be expensive and does not always solve the problem 100%.

I have had this conversation with many patients over the years and it is never an easy one, however I have seen dramatic improvement and resolution of symptoms once those affected are removed from their source of exposure.

Other steps involved in treating Mycotoxin Illness include:

  • Thorough cleaning of the home or work space with consideration for air filters
  • Avoiding toxin exposure from other sources by choosing clean, non-toxic cleaning supplies, home furnishings and self-care products. This helps to reduce the overall toxic burden.
  • For some, a low-mold diet is helpful.

To promote the clearing of Mycotoxins from the body I recommend:
Intestinal Binders
Intestinal binders of various forms are taken by mouth to bind Mycotoxins in the gut, preventing reabsorption back into the body. Examples of intestinal binders include activated charcoal, chlorella, zeolite and bentonite clays, and prescription WelChol (most often prescribed to lower cholesterol).

Glutathione
Glutathione is an antioxidant “powerhouse” which aids the detoxification of Mycotoxins from the body. Glutathione levels are often reduced in those suffering from Mycotoxin Illness and Glutathione supplementation plays a key role in the treatment process.

Sweat, Hydration and Regular Bowel Movements
Sweat, urine and stool are the three primary paths Myctoxins take to leave the body. Many of my patients incorporate regular sauna use (staring with very short sessions and working up slowly) into their treatment plans. Adequate hydration is important not only to encourage the “flushing” of toxins through urine, but also to prevent tissue damage throughout the body. Intestinal binders can be constipating, so I often add extra magnesium to promote regular daily bowel movements.

For those who have developed CIRS, testing and treatment protocols are often more complex. While response to treatment varies per individual, I have been amazed by the rapid and significant improvement in symptoms witnessed in those diagnosed and treated for Mycotoxin Illness.

Much of the information in this blog was learned from Dr. Jill Carnahan through educational training with the Institute for Functional Medicine. Dr. Jill is a nationally-recognized mold illness expert and I encourage you to check out her website for more information.



Carin Nielsen, MD Integrative Medicine I use an Integrative/Functional Medicine approach with my patients to treat a variety of chronic medical conditions, including those conditions often dismissed by Western Medicine like Mold/Mycotoxin Illness and Lyme disease.  During the COVID-19 pandemic I continue to see both new and returning clients using our secure, easy video-visit format.  If you are interested in learning more or if you would like to schedule a consultation, please contact our office This email address is being protected from spambots. You need JavaScript enabled to view it. or 231-638-5585.

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