One of the challenges of writing blog posts that explore root causes of brain related symptoms is that what we are learning is constantly evolving. There's so much we still and will never know. Another challenge - everything is interconnected. The best I can do is to write about these root causes separately. While some contributing factors can occur in parallel, one condition is often leading to other downstream conditions that themselves contribute to things like depressed mood, anxiety, mood swings, brain fog/inattention and so forth.
Mold toxicity is a perfect example. It can contribute to Pyrrole Disorder due the stress it puts on the body. It can lead to elevated copper by overwhelming one of the antioxidants in the body that regulates copper. Because it interferes with the immune system, it can lead to a susceptibility to candida/yeast, Lyme and its co-infections. It also frequently worsens Mast Cell Activation (see my last post). I consider it a root of the roots. In my daily work, I find mold toxicity to be very common. Here’s why -
It is estimated that 50% of buildings have water damage. Where there is water damage and retained moisture, there is an ideal medium for toxic mold to grow rapidly and produce spores which carry toxins. It isn’t just the infamous black mold, or Stachybotrys that’s a problem. Aspergillus, Penicillium, Fusarium, and Chaetonium also make toxins that can be acquired through inhalation, ingestion or through the skin. Mold in buildings is often not visible. It can be in a crawl space, an attic, behind a wall, or under a sink. It can be within a component of an air conditioning system or even duct work. The spores can disseminate easily. They don’t necessarily stay, for example, in a damp basement. Outside mold has checks and balances and also isn’t concentrated in a contained space.
Once acquired, the toxins enter cells and start an inflammatory process and make it harder for the body to detoxify. There’s evidence that mold can colonize the sinuses and possibly the gastrointestinal tract. This would explain why for many people, simply getting out of a moldy environment is not enough to alleviate symptoms. Not only do they continue to have toxicity, they may also be harboring toxin producing mold. If that wasn’t enough, some will also have mold allergy.
In one water damaged home, not every family member will necessarily be impacted. Seemingly 25% of people are unable to make antibodies to mold toxins. Add to that the 50% of buildings that have water damage, and you have a lot of people who are unknowingly becoming toxic while spending time in affected homes, schools, workplaces, cars, dorms, and nurseries. When you consider the masses of people returning to water-damaged homes after floods, the implications of this evolving understanding is staggering.
In a world with so many other insurmountable challenges, I wish this weren’t true. There are many who argue that it isn’t. For me, this truth, that mold toxicity is a big part of what is making many people sick, is reinforced every day in what I do.
This type of information won’t disseminate like mold spores. Few people will ever identify mold toxicity as the source of their health problems. Fewer will be able to do what is required to heal. I remain hopeful someone out there will benefit from happening upon this information.
For the 25% of people who don’t mount a typical immune response to mold toxins, antioxidants and strategies to enhance detoxification don’t necessarily remove these toxins. Mold toxins basically go from the body, to the liver and gallbladder where they are bound to bile and sent out into the gastrointestinal tract. The bile, however, is recycled (as a means of conservation), and thus take toxins back into the body.
Symptoms of mold toxicity impact many parts of the body. Often there are many symptoms that seem unrelated, which is why many who are unknowingly dealing with this, end up seeing multiple specialists and are left feeling their doctors think it’s “all their head.” The diagnosis of anxiety or panic, depression, obsessive compulsive disorder, ADHD/ADD and conversion disorder are fairly common. I empathize with doctors who have been trained to relieve symptoms as opposed to seek deeper root causes. Still, I do think all physicians (myself included) can benefit from realizing and saying repeatedly, “There’s so much we don’t know,” or even “I don’t know why you are having your symptoms.” The lack of humility or inability to admit one doesn’t have the answer, sadly can lead to some doctors to discount symptoms as “psychiatric” or even blame their patients for feigning their symptoms.
My own foray into this topic, came in 2016 when I started to hear about mold toxicity from some of my functional medicine colleagues. While looking for resources, I took the VCS/Visual Contrast Sensitivity APTitude Screening Test at Dr. Ritchie Shoemaker’s website, Surviving Mold. Dr. Shoemaker is the pioneer who has brought this important problem to the world’s attention, starting with his book, “Mold Warriors.” The VCS test is a screener for biotoxicity. Other biotoxins (such as from Lyme), metal toxicity or even a gluten sensitivity can impact this test. Passing it doesn’t mean you don’t have mold toxicity, but failing would raise suspicion.
The fact that I failed the test and had a number of symptoms suggestive of mold toxicity, wasn’t enough to start me down the path of exploring mold toxicity for myself. Like many, I gladly opted for denial. What such a reality would mean for myself, my family and home was more than I wanted to consider. One year later, a colleague suggested I consider mold toxicity for my persistent low grade neurological symptoms. Fast forward 3 years and through my and my daughter’s healing processes and I’m now regularly diagnosing and treating mold toxicity in adults and children. Repeatedly, I’m surprised at just how common this is in those with brain related symptoms.
I've been fortunate to have as a mentor, Neil Nathan, MD - one of the leading experts and pioneers in this area. Because of my early joining, I’m grateful to be considered a Full Founding Member of the International Society of Environmentally Acquired Illnesses or ISEAI.
Despite the growing knowledge about mold toxicity, available testing and treatment, we still know very little. This area of medicine is in its infancy and we are collectively learning more every day. Even among the pioneers, there is debate about the testing, evaluation, treatment and whether mold colonizes in the body. The below information I share is based on my own education, as well as my personal and professional experience.
It is worth noting, many of these symptoms overlap with mast cell activation. Mold toxicity is a very common driver of mast cell activation. While there seems to be a genetic component to mast cell activation (fitting with RCCX theory), it has been the experience of many of us, that mold toxicity will take it to another level and that when you treat the mold toxicity many of the mast cell symptoms settle down.
- Highly sensitivity to a wide range of things such as scents, medications, supplements, emotional triggers, weather changes, etc. This is likely because of the mast cell activation, but also because the toxins not unlike a traumatic event, can prime the brain for danger. By this, I mean, the brain knows something is wrong and is sending danger signals, but it doesn’t know what the danger is. I have met many mold toxic patients who are exceeding vigilant, but not necessarily about mold, because that simply wasn’t on their radar. Instead, they have other contamination fears, obsessions about their health, paranoia and so forth.
- Brain fog
- In children this can look like ADHD or ADD
- Cognitive decline
- Anxiety and depression
- Mood swings
- Symptoms very specific to mold toxicity, though they don’t have to be present.
- Electric shock sensations
- Ice pick-like pains
- Vibrating or pulling sensations running up and down the spine.
- Numbness and tingling
- Balance and dizziness without other identifiable neurologic conditions
- Atypical Parkinson's Disease
- Atypical ALS
- Psychogenic seizures or pseudo-seizures
- Tics, spasms and seizure like events
- Sensitivity to bright light and light touch
- Suspected or Diagnosed PANS/Pediatric Acute-Onset Neuropsychiatric Syndrome
- Chronic sinus congestion
- Gastrointestinal symptoms
- Coughing, chest pain, shortness of breath
- Muscle weakness and pain
- Joint pain and morning stiffness
- Excessive thirst
- Frequent urination
- Appetite swings
- Rapid weight gain
- Night sweats
- Body temperature dysregulation
The diagnosis of fibromyalgia, or chronic fatigue are both common. In 2013, Dr. Joseph Brewer, an infectious disease specialist and also a pioneer, found that 93% of 112 people with Chronic Fatigue Syndrome had elevated levels of mold toxins.
While there are some inflammatory markers that can be tested, many of us instead now use urine mycotoxin testing, to identify which toxins are present. Knowing which toxins are present impacts which binders are used to remove the toxins.
- Evaluating one’s current environment is essential. Many people have learned the hard way that they’re unable to heal if they stay in a moldy environment. There are some ways to start to evaluate indoor environments using plates and/or ERMI testing. My preference, however, if at all possible, is to have a certified environmental consultant visually inspect, and do air sampling or swab testing if indicated. They will also have the ability to identify temperature gradients behind walls and under flooring using infrared light, which can point to contained moisture and thus likely mold. In consultant who is independent from a remediation company (and thus does not have a conflict of interest), can give direction to a remediation company of one’s choosing if needed. They can direct how to contain the space as the mold source is removed so that exposure isn’t increased, as well as indicate which areas of the home and contents that have been exposed. Likely they will retest after the remediation is done. The door to my previous office didn’t have a good seal between the door jam and the concrete below. When it rained, water made its way into the sub flooring. Water damage wasn’t evident nor considered until the hardwood eventually started to buckle. Prior to this, however, every time someone walked across the threshold, an invisible “poof” of mold spores carrying toxins was released into the air.
- Binders are chosen based on the mold toxins that show up on the urine test. Examples include bentonite clay, activated charcoal, chlorella, cholestyramine, and colesevelam HCI. The doses are determined one at a time. For some very sensitive people, only tiny amounts are tolerated, though still effective. The duration of binders can go beyond one year. This is not a quick fix. It takes time and patience, but for most people there is steady improvement. “ I’m now able to read again and remember what I read,” I’m exercising again,” or “I can eat a wider range of foods without reacting,” are the types of initial observations that reflect the beginning of the healing process. For some people, the binders help move them toward healing, while for others who seem to have had colonization, such as in the sinuses, antifungal treatment steps may need to be added.
- Antifungal treatment when necessary in the form of nasal sprays and/or antifungals for the gastrointestinal tract to address candida which is also frequently present.
- Diet - As with candida/yeast, mold will thrive on a sugar and a high carbohydrate diet. Though there is a great deal of individuality when it comes to food, most people with mold toxicity seem to do best with a whole foods diet of lean protein and vegetables along with an avoidance of sugar and limited carbohydrates. Of those who also have mast cell activation, some will benefit from a low high histamine diet
- There are many other potential pieces, such as treatment for mast cell activation and other down stream effects (mentioned earlier), as well as strategies to address the acute danger response (limbic system dysfunction) that mold toxicity can cause.
The duration of treatment depends on a number of factors, including age, severity of symptoms, sensitivity, and the presence of other conditions such as Lyme, Bartonella, Candida and even methylation imbalances. For some the treatment can be 1-2 years, though again, the improvement usually starts long before this. Children tend to have quicker responses and may only need 6 months of treatment.
Anyone who makes this journey will tell you, “It’s a process” - one that can start out with a mix of relief and overwhelm. Relief to finally be finding answers and overwhelm about the larger implications for one’s family, home and the items in their home. Over time, however, through education, and hopefully improved mental clarity and energy, a new reality starts to set in.
I once wondered how I would feel safe in future homes or offices, given how common indoor mold is. Part of my concern likely lessened by removing the toxins which would diminish the danger response. Also, I've found (as have others) that if we pay attention, our bodies will tell us when there's a problem. The environmental consultant, with whom I work closely, knows that if I walk into a home or office and say, "There's mold here," that even if it's not visible, when he runs air samples, there will be elevated spore counts. For me the cues are increased heart rate, very mild nausea and a subtle buzzing sensation in my body.
Indoor mold has taught me many things, but none more powerful than this - if we pay close attention, our bodies will tell us much of what we need to know. We can call it intuition, or we can call it an acute inflammatory response to an environmental exposure. Perhaps they're the same thing. For me it doesn’t matter. At this point, I simply trust it.
For more information on this topic or to find a physician in your area, see the International Society For Environmentally Acquired Illnesses / ISEAI website, or google “Mold Literate Doctors (or Practitioners)”
If there is one book that clearly, comprehensively and compassionately covers what is being learned about this complicated area, it is -
“Toxic - Heal Your Body from Mold Toxicity, Lyme Disease, Multiple Chemical Sensitivity and Chronic Environmental Illness” by Neil Nathan, MD
I would also recommend Jill Carnahan, MD’s Definitive Mold Clean Up Guide