Mold Illness, Debilitating Symptoms, and Explaining Why Doctors Aren’t Listening
This week, I spoke directly with two normally healthy individuals seeking guidance about where to get help for illness brought on by mold exposure. Both have seen multiple physicians, spent significant amounts of money, and are at their “wits’ end.” Both have been trying to find solutions to their declining health for some time. Both are in their thirties and describe themselves as active and healthy prior to instances of mold exposure.
The first person was a former athlete in excellent physical shape who described his symptoms as “pulverizing”. He discussed multiple instances where he was exposed to moldy environments that instantly crippled him. Severe neurological and motor function symptoms were experienced; he felt like he had “dementia”. He currently lives separately from his wife and children. He has done extensive internet research on his symptoms and has read about several syndromes that may be the cause. He has not had luck with physicians. His core issue is finding a physician who will listen and explain his condition so that he can get the proper help with treatment. That led him to my newsletters and to reaching out to me. We discussed his situation at length. His objective is to feel healthy again and be able to return to living with his family.
The second person is an active professional who also exercises and eats healthy. She described a constant “brain fog” and the feeling of pain like “there are rubber bands around her sinuses” and headaches. She recalls that her sinus issues began when some water damage was repaired in her relatively new home. She has seen an ENT and had a CT scan that showed that her sinuses were clear. The ENT’s conclusion was that her issues were not in her sinuses, and she was sent along. She has since seen a “functional medicine” doctor who took numerous diagnostics at a big expense. She is very concerned with the potential financial stress and wants to know how to get well.
Since I am not a physician, I can only provide insight and explanations focused on helping them find a path to the right medical professionals who will listen to and treat them. Both people also need advice on exploring what they can do in their home environments to mitigate further mold exposure.
I try to not lead people toward a path of expensive speculative solutions, endless doctor visits, and other professional interventions. This usually overwhelms individuals and can leave them “turned off”. If I do so, they feel like my advice is more of the same and another dead end.
Bedside Manner Counts
There are several reasons why integrative approaches are more successful with mold patients. First and most obvious, these physicians spend significantly more time with the patients and ask about their environment. They look at the entire body with all of its systems as a whole. A detailed medical history, including the history of mold exposure and water-damaged buildings exposure is explored in detail. Valid diagnostics by certified labs exist to identify evidence of mold allergy, mycotoxin exposure, and other causes of illness, such as heavy metals.
The desire and ability to provide medical attention and listen to the patient is essential for forming a relationship of shared responsibility. When a doctor and patient work together, there is better adherence to a treatment plan, and patients are more likely to adopt the behavior changes required to get well. There must also be trust and guidance from the physician towards having a patient’s home environment examined and made clean and safe; this is critical to getting better. Without a safe environment, the body will not heal with any medical interventions, because breathing in mold and toxins will perpetuate the inflammatory response.
Recent Recognition of Other Factors
While mold sickness has been around for ages, there are also other elements to healthy living that have changed over recent times. The impact of diet has immense importance. The introduction of processed foods as predominant components of the modern diet is finally becoming concerning, because obesity, metabolic diseases, and diabetes are skyrocketing. Read more about diet and gut health HERE.
In addition, the importance of indoor air quality for the masses is relatively recent. The continuous efforts to develop more energy-efficient and less costly homes have changed the building materials used for most homes. Homes have become tighter, but this has created moisture issues. In addition, standard drywall and particle boards used today absorb moisture, increase water damage, and contain organic matter that is conducive to mycotoxin-producing molds.
My Advice to the Readers Mentioned Above
I recognize that it is a ‘brain overload’ to learn about environmental illness. I do my best to inform people to take one step at a time. Acting on every possible solution without evidence can waste significant energy and financial resources. It is important to learn what they can about their illness prior to visiting professionals for treatment or service. These are the suggestions I made to these people. I try to focus my advice on inexpensive steps to provide direction to the patient initially.
- Begin gathering information prior to visiting a physician.
- Get out of the home and find a safe place to stay for several days to see if they feel better, think better, or sleep better. This is a critical hypothesis to test and provides valuable information to both the patient and doctor.
- Do some research about mold illness and mycotoxins. I often refer to past articles I have written because the approach and audience targeted are normal people just like them. There are obviously numerous blogs, websites, and articles that offer significant expertise and experiences beyond my understanding. However, I am sensitive to their condition and try to keep it short and simple.
- Test their homes with mold test plates. These are relatively inexpensive and easy to perform and will help to determine if the home tests positive or negative for mold.
- Document every exposure to mold, water-damaged buildings, and symptoms you have experienced that you believe are due to mold exposure. Be prepared to share this with your physician as they may be accustomed to asking very few questions and spending little time with patients, especially in regards to their history or environment.
- Do some research to find physicians who treat mold and mycotoxin illness.
- There are several online databases that will direct patients to physicians who treat mold illness in their area. You can learn about “How to Find a Mold Doctor or Environmental Illness Doctor” by Catherine at moldfreeliving.com.
- Call the doctors’ offices and explain your symptoms to see if the physicians you are selecting specifically treat your illness. Do this prior to spending time and money on an office visit.
- In the event the visual mold test plates reveal potential problems, consider additional lab testing or hiring an accredited environmental inspector or Bau Biologist (HERE is my article on Bau Biology—I thought that might be a good place for an additional link) to validate your results.
- You can purchase a Mold Diagnostic Test Kit. The mold plates will be directly sent to you by Immunolytics with directions and materials to send the plates back to the lab. Access to the lab results is included and will be emailed to you with valuable supporting information in approximately 7-10 days.
- A more conclusive environmental test for mold and mycotoxins called the EMMA Test can be done through Real time Labs.
- There are some medical diagnostics that can be done at the doctor or on your own by ordering the tests on the internet. I caution this approach only because reading the diagnostic results can be confusing and overwhelming. Going through a doctor or a lab who can help you go over your results in detail is always the best approach.
- An IgG test for mold antigens will determine if your body has antibodies for specific molds. This can indicate an allergy to mold.
- A Mycotoxin urine test is done by Real Time Labs or Great Plains Laboratory. While not foolproof or definitive, if you are actively secreting mycotoxins in your urine, it is a good indication of current or past mold exposure.
The Most Significant Challenge We All Face: Getting the Right Doctor to Treat for Mold
Since the majority of mold is inhaled, the largest concentration of mycotoxins exists in the sinus mucosal tissue. Currently, there are no diagnostics to test for mycotoxins in the sinuses. Because the sinuses reside adjacent to the cerebral spinal fluid around the brain, direct exposure to the brain can cause significant neurological symptoms without being detected in a urine test for mycotoxins. I know of few cases where ENTs have removed damaged tissue from the sinuses during surgery and have tested that tissue for mycotoxins after the procedure (similar to a cancer biopsy). This is NOT the norm for most ENTs I have encountered, though. In fact, I only know of one who has embraced this practice. Most ENTs refer patients with neurological symptoms to a neurologist.
It is a significant challenge to even find ENTs who treat fungal sinusitis other than surgical removal of “fungal balls.” I receive numerous accounts of patients seeing ENTs for mold without success or frustrated with the outcome. It is also rare for an ENT or any specific specialist to treat the body in an integrative manner. This is no fault of theirs as the specialty that they are licensed to practice is very focused. The burden to find such doctors falls on the patients.
I would be grateful to anyone who would share their experience of being treated for mold by their ENT. I know there are ENTs out there that treat sinuses for mold and mycotoxins. I would love to be able to direct suffering patients to see them. It is frustrating to attempt to find a local ENT that treats both fungal infections and mycotoxins in the sinuses. Knowledge of these ENTs successfully treating sinuses for mold and mycotoxins could be life-changing for people to know of their existence. Please feel free to comment on your experiences.