My Mold Story
By Pattie Rose, MSN, FNP-BC, ABAAHP
We all have a story. Our stories in life can catapult us into having a “mission,” a “calling,” or “purpose.” As health providers, our personal medical story gives us increased compassion for patients going through similar health issues along with a tenacious determination to help them heal so they don’t have to suffer what we or our loved ones have gone through. Today, I would like to take a moment to share with you a bit of my story and how I came to treating Mold Sickness in patients.
Three and a half years ago, my husband who at the time, was 59 years old, started having a series of bizarre, transient symptoms, mostly neurological, that for two years, went undiagnosed. He was seen multiple times by our medical doctor, 2 neurologists, a neuro psychiatrist (because that’s what conventional medicine does when they can’t find the answer – they send patients to a psychiatrist because they’re either depressed or it must be psychosomatic), 1 ENT doctor, and 3 ophthalmologists, including the top 2 retinae specialists in town. Nobody could explain the symptoms or their etiology. They ruled everything out like stroke, seizures, MS, brain pathology, ALS……which we were very thankful for……but still no answers.
His symptoms started with Bell’s Palsy and left sided facial drooping which resolved in 10 days. A few months later, he developed sudden onset stuttering, he could sing perfectly, but every word he tried to speak took every muscle in his upper body to get out along with mental confusion which resolved after 2 weeks. He lost 40% of his peripheral vision in the left eye with CNS II and III involvement. He would experience a constant numbness/bruised sensation over the right temporal area of his scalp, along with ice pick headaches, sometimes as many as 5 in succession causing him to fall down. He had a chronic, dull pain sensation just over the left parietal area on the scalp. The most bazaar symptom was what he would call “like someone turning the light switch off then back on” in his head where it would go completely blank for a second. These he would have up to 10 times a day making him unable to drive. He would also describe severe brain fog, extreme debilitating fatigue, and upon waking, feeling like he was suffering from a very bad “high” or “hang over.” Sometimes lasting for days. Despite all these symptoms he was denied Disability twice because there was no diagnosis or explanation for the symptoms.
Because I did not accept not having answers from conventional medicine, I started working on him, where all Functional Medicine practitioners start……in the gut and with detoxification which brought some improvement. I continued to run tests and finally diagnosed him with Mold Sickness. I am very thankful for my background and training in FM and that I was even introduced to other possibilities for his symptoms, including Mold Sickness. After starting him on the proper treatment, I am happy to say that he has recovered 90% and continues to improve.
Now let’s look at some information about what Mold Sickness is and how it can affect your health.
What is Mold Sickness?
Multiple names have been given for this illness over the years, including “Mold illness,” Biotoxin Illness, or “Mold Sickness.” This illness is not an allergy or allergic reaction; however, many people confuse that with what is really going on and call the symptoms “allergies.” The common complaints seen are frequent bouts of sinus congestion and pressure, sore throat, cough, or runny nose.
Additional symptoms can also include: migraine headaches, ice-pick pains, red eyes, fevers, numbness in hands/legs/arms, insomnia, fatigue, anxiety, depression, joint pain/stiffness, urinary frequency, hormone imbalances, weight gain/loss, static shocks, irritability, memory loss, rashes, stomach problems, food sensitivities, chemical sensitivities, diarrhea, or constipation.
Mold Illness is a cluster of health problems stemming from an inflammatory response in the body. The inflammatory response starts when the body is exposure to something foreign like mold, fungi, candida, volatile organic compounds (VOC), or biotoxins and the exposure causes the body’s immune system to go on the defense. When the immune system has gone haywire from chronic exposure, inflammatory cytokines are released causing a multitude of symptoms which can affect any tissue or organ in the body causing many health problems.
What Happens in the Body with Mold Sickness?
Many people suffering with Mold Sickness may “not look sick.” But these people are having great difficulties with an illness that causes them to lose their quality of life. People don’t typically walk around saying “oh, my inflammation levels are up today.” They don’t realize that is what is going on. The inflammation going on in the body caused from mold illness is due to an assault by their own unregulated innate immune system. Because of exposure to the interior environment of a water-damaged building, these patients will have a series of abnormalities in immune responses that they will not be able to selfheal. These symptoms will increase in severity, left untreated, and will continue to cause illness from blood, organ, and tissue based inflammation.
When the body is faced with a foreign substance, it immediately begins to process that substance – recognize it, determine if it is good or bad, a friend or a foe, and throw it into the antigen presenting machinery that will normally generate an effective antibody response. If the body determines the substance is a enemy, it will develop antibodies to bind these substances, called antigens.
These antigens stay in the body, and our own defenses bombard our body in response to those antigens. What you now have is a person who is defenseless against new exposures and is suffering daily from inflammation. The constant exposure to the antigens produced to mold can trigger autoimmune disorders, including Hashimotto’s.
How Can I Tell If I Have Mold Sickness?
Having a medical provider trained in diagnosing and treating Mold Sickness is very important. Most people will see an average of seven to ten doctors for their symptoms before getting a correct diagnosis. The average doctor is not trained or equipped to diagnose this condition meaning you will probably be told, more than once, that there is nothing wrong with you, everything looks normal on your lab work, or you are probably depressed and need an anti-depressant when you know deep in your heart that something is just not right.
The initial screening test for Mold Sickness is the Visual Contrast Screening exam which you can do online for $10-15. This vision test was designed by Dr. Richie Shoemaker who has been treating Mold Illness in patients for years. The test looks at the blood flow to the eye and Dr. Shoemaker has found that people affected by mold exposure will fail this eye test. Sometimes, vitamin deficiencies or cataracts can also cause a failed test.
How Do You Get Mold Sickness?
There are many ways buildings become home to a toxic mix of microbes, and harmful chemicals. Buildings can host fungi, bacteria, mycobacteria, and actinomycetes as a result of construction defects like inappropriate ventilation, faulty construction of crawl spaces, inadequate building design, flat roofs, fake stucco cladding without adequate caulking, basements exposed to saturated ground water conditions, not correcting water leaks and more.
Mold illness reflects a growing societal problem: dangerous buildings. Inhaling these dangerous inflammagens is making people sick.
We live in the Era of Dangerous Buildings with 50% of our buildings (NIOSH, 2011) having water damage so the likelihood that you will be exposed to dangerous buildings is quite high.
People can also get sick from byproducts of bacteria, viruses, and fungus growing in their bodies. Candida overgrowth in the gut can cause multiple symptoms described above as well as spirochetes from Lyme disease, co-infections, and bacterial and fungal overgrowth in the gut.
How Do You Treat It?
The first thing after you have been diagnosed with Mold Sickness is to test your home. You will not be able to heal completely until you are living/working in a clean environment. Having an environmental hygienist trained and certified in environmental mold testing is very important. There are a lot of businesses claiming they know how to treat a mold problem but be very leery of someone who wants to do air sampling only and do the remediation himself. Better to have the hygienist check and then use a separate person trained in remediation.
The Environmental Relative Mold Index (ERMI) test is a swifter cloth test where dust samples are collected and sent in for analysis. You can order this test online, they will send you the cloth, you collect samples, and return the cloth to be analyzed. If you happen to be genetically susceptible or sensitive to mold you will need an ERMI score of less than 2. Even if the score is less than 2 but there are large amounts of Stachybotrys (black mold) present you may not be able to continue living in the area. The HERSMI 2 test is performed after remediation to make sure the mold scores are within a tolerable range. For mold sensitive/susceptible people, this score will need to be below 11 to tolerate.
Will I Get Better?
The toxic byproducts from mold exposure are called Mycotoxins and they are stored in fat tissue where they stay until being drawn out with the proper treatments. You will not be able to “self-heal” without pulling the toxins out with treatment. Most of my patients will see an improvement in their symptoms within the first month, however, it may take as long as a year to recover and some symptoms may be permanent.
Continual detoxification and trying to avoid toxic substances will be your new way of life. We are constantly being exposed to toxic environmental substances that can affect the quality of health and possibly cause a regression in prior symptoms. Sometimes, there are other contributing factors to your symptoms beside mold exposure that will need to be treated as well.
The good news is, Healing is Possible! It takes time but well worth the effort you put in to regain your quality of life.
Best of Health,