Millions of Americans could be ill from toxic mold exposure

When Morgan Monahan moved into the Regal Rita Apartment complex in June 2017, she was an ambitious, healthy and high-energy junior at the University of Southern California.

“Life always came easy to me, it was always fun,” Morgan says. “I was engaged in whatever I was doing, and especially engaged in school. I never had to think twice about anything.”

Morgan Monahan prior to moving into the Regal Rita apartment.

Yet, by the time she abruptly moved out of her apartment in November 2018, she could hardly recognize herself. She still struggles with the damage her living environment caused. “Everything is a lot harder,” she says. “My day-to-day has to be consciously thought out, I feel so disconnected, so easily burnt out, and have no energy.”

Chronic fatigue, headaches, tremors, light sensitivity, stomach pain, insomnia, memory loss and brain fog. These are some of the symptoms of an undiagnosed illness caused by toxic mold exposure. The illness—often referred to as Biotoxin Illness, Mold Disease, or Chronic Inflammatory Response Syndrome (CIRS)—is difficult to diagnose. Symptoms span across multiple systems in the body which make them appear seemingly unrelated. They are all connected to the same root cause—toxic mold exposure.

Pictured above is author of this story, Nicole Farage. She has had her own experience with toxic mold illness. To read her personal story, click here!

During an initial walk-through of the apartment, it appeared clean and well-maintained, but Morgan now recalls warning signs. The vent on the air conditioning unit was completely black, the bathroom shower had what looked like mold growing around the faucet, and even after thoroughly cleaning it, it would grow back. Morgan also describes the apartment as excessively dusty even though she cleaned often, kept the windows closed and used the air conditioner instead.

During that year, Morgan developed a persistent cough and constantly had low energy. “I was really tired,” Morgan says, “but I assumed it was because of my job, starting my masters while doing undergrad and being busy.” She didn’t even consider it could be linked to her living environment.

Morgan's apartment upon move in appeared to be clean and habitable, yet had a hidden toxic mold problem.

Despite those apartment issues, Morgan decided to renew her lease after graduation in the spring of 2018. She had won a distinguished Town and Gown Scholarship to continue her education through a year-long progressive master’s degree program at USC Annenberg.

Morgan left Los Angeles for the summer and returned a week before Fall classes began. One night, Morgan and her friend were trying to wake up another friend who had fallen asleep in Morgan's bedroom with the door locked. While knocking on the wall next to the door, her friend accidentally punched a hole through the wall. This inconspicuous hole in the wall is ultimately what caused Morgan’s health to decline. It exposed one of the mold hot spots in her apartment, where a high concentration of toxic mold had been growing.

Mold expert and inspector Mark Levy conducted the mold inspection and testing in Morgan’s apartment. “Every time you would open and close the front door,” he says, “it would act like a suction cup, sucking out more and more mold from the hole in the wall, and spreading it by air throughout the apartment.”

The hole in the wall that exposed one of the numerous mold "hot-spots" in the apartment with a high concentration of toxic mold.

Soon after the wall-punching incident, and just three weeks into the academic semester, Morgan recalls feeling lonely and depressed—describing her state as “a psychological funk.” She rationalized it as an adjustment phase since most of her friends had graduated and moved away. She pushed herself to stay busy by starting an internship. “I was commuting to Santa Monica in traffic, and remember it being really hard. It was so incredibly taxing. But I kept thinking I should just keep doing it, keep plugging away.”

This symptom that Morgan describes is commonly referred to by mold patients as brain fog. “One day when I went in to the office, I was just not able to do any work. It felt like a complete brain paralysis and an out of body like experience. I was cognizant, I could see myself, but I couldn’t make myself do things.” Morgan says even getting up to get a glass of water was a task too difficult to figure out. “That was when it became apparent to me that something was really wrong.”

A sketch of Morgan's apartment and mold "hotspots."

Within a few days, Morgan had her first panic attack, which led her to seek answers from a doctor. She went to see her general practitioner, who insisted that Morgan was physically fine, but must just have a lot going on between work and school. He recommended that she go on antidepressants to help with the psychological symptoms that she was struggling with. “I started taking those but I knew in my gut of guts that it wasn't right. I knew that something else was going on. And all my symptoms just kept happening.”

Looking back, Morgan recalls that she would get relief in her symptoms when she spent extended periods of time in other environments. During the first two months of the semester, she spent a few weekends with friends in San Diego. When she returned home to Regal Rita, her health would decline. “When I would get home, immediately I would be sad and cloudy. The feelings would come on pretty rapidly, but I convinced myself that it was just me being sad to be away from my friends. I really didn’t think much more of it.”

As the semester progressed, not only was Morgan’s health declining, but her academic performance suffered. Once a straight-A student, she was now struggling to pass her classes. More than halfway into the semester, one of Morgan’s professors, Colleen Keough, pulled her aside to speak with her. She asked Morgan if everything was okay at home. Shocked, Morgan responded, “What do you mean?” and her professor asked again, “Are you sure you are okay?” Morgan admitted that she was having a very tough time and not feeling like herself. Her professor pulled out a paper that Morgan had recently submitted and asked Morgan to read one of the paragraphs out loud. “It was literally jibberish and made no sense,” Morgan recalls. “The sentences did not make any sense at all. I was shocked and just started breaking down crying and then shared everything with her.”

Morgan Monahan during the time she was living in Regal Rita, exposed to toxic mold.

By November, Morgan’s psychological and physical symptoms escalated and became unbearable. She quit her internship in an attempt to take some pressure off and refocus her time. “I wasn’t sleeping at all. I was so tired and I would try to go to bed, but I would be up all night with my head spinning, constant headaches, and my skin on fire.” She ended up leaving for Thanksgiving break a few weeks early, explaining to her professors that she had a personal emergency and would be missing class. Morgan flew home to Northern California where her parents brought her to see Dr. Matthew Cook who specializes in regenerative medicine. She received some IV treatments. “They were just trying to get me to feel alive again.”

Cook also performed a series of urine and blood tests to try to uncover the root cause of her symptoms. At the visit, he said, “You know what? Just cause you're here, take a few tests for me.” One of the tests, called a Mycotoxin test, screens urine for toxins released by mold. This type of testing is largely unknown to traditional MDs, and is conducted by just a handful of labs in the entire country.

After a few weeks at home, Morgan started to feel more like herself. “I started to come back to life and feel okay. My mom even said, ‘You came back alive!’” Most of Morgan’s symptoms started to subside, except for one that continued to intensify—excessive thirst. Morgan was so chronically thirsty that she couldn’t stay asleep for more than a few hours. “It was so odd and really annoying. But I once again came up with an excuse—that it was the elevation causing me to be thirsty all of the time.” Excessive and unquenchable thirst happens to be one of the tell-tale signs of toxic-mold illness.

After the Thanksgiving break, Morgan flew back to Los Angeles to complete her last few weeks of classes before winter break. She arrived at LAX late in the evening. “When I got home, I instantly fell asleep. And when I woke up the next morning, every single symptom was back with a vengeance.” At a loss with what was going on, she called her mom, who gave her urgent advice: “I didn't want to freak you out. But I've been on the phone with mold experts all day. You need to grab a bag and leave. Your levels came back off the charts.”

SYMPTOMS ACROSS MANY SYSTEMS LEADS TO MISDIAGNOSES

Morgan’s experience with seemingly unrelated symptoms across many systems is what happens to many patients with mold illness. Dr. Neil Nathan is an expert on toxic mold exposure related illness. He’s the author of Toxic: Heal Your Body from Mold Toxicity, Lyme Disease, Multiple Chemical Sensitivities, and Chronic Environmental Illness. According to Dr. Nathan, toxic mold exposure can cause 30 or more symptoms across the body. Some of the most common symptoms include fatigue, weakness, muscle aches, headaches, abdominal pain, cognitive impairment, mood swings, night sweats, joint pain, ice-prick-like pains, among others.

The symptomatology that patients report leaves many doctors confused and unable to provide an accurate diagnosis. This is especially true in the mainstream medical community where practitioners are not well educated about environmental health issues. Despite the fact that environmental toxicity is a main contributor to chronic illness, medical school curriculums lack education and training on these associated conditions.

So when a patient like Morgan goes to the doctor describing her state and symptoms across the body, doctors aren’t trained to properly diagnose what is going on. Instead, many doctors will go as far as saying that it’s purely a psychological problem and prescribe anti-depressants. Dr. Nathan explains that this is a common experience for patients with mold toxicity. “They find themselves instantly judged as having a psychological condition, and their doctors stop listening to their descriptions.” The invisibility of this illness is a major obstacle in receiving a diagnosis.

Dr. Bruce Hoffman says he has also had patients with similar experiences. “Many sufferers of mold illness first endure years of misdiagnosis or are even dismissed as having an illness that’s psychosomatic,” he said. “The problem with toxic mold illness is it can feel like a phantom illness. The symptoms seem unrelated and can cause doctors to look in the wrong places for a diagnosis.”

If doctors do try to provide a diagnosis or label for their patient’s description of symptoms, it often leads to a misdiagnosis. Since symptoms overlap with the symptoms of other diseases, patients are misdiagnosed with conditions like fibromyalgia, chronic fatigue syndrome, depression, irritable bowel syndrome, and chronic sinusitis.

According to a 2013 research study by Dr. Joseph Brewer, 93 percent of patients diagnosed with chronic fatigue syndrome (CFS) had mold toxins found in their urine. And 90 percent of those patients indicated current or past exposure to water damaged buildings. This clear connection between mold exposure, mycotoxins found in the urine, and a CFS diagnosis poses the question of whether or not many of those patients are actually sick with mold toxicity rather than CFS.

Dr. Nathan describes mold toxicity as a “great masquerader,” and is the most “under-appreciated”, and “under-recognized” illness that he can think of. Some patients report seeing over 20 doctors before reaching an accurate diagnosis.

Naturopathic Dr. Jill Crista is the author of, Break the Mold: 5 Tools to Conquer Mold and Take Back Your Health. She also developed an online educational certification course for practitioners to become mold literate. Fueled by her own experience with mold-related illness, she created the course to empower more practitioners with the knowledge to identify, test, and treat mold-related illness.

In her experience, one of the primary reasons doctors are unaware of mold-caused maladies is because of the lack of clinical research studies documenting the detrimental effect of mold toxins on human health. However, plenty of animal studies show the deadly effect of mold on animals. “We’ve been losing entire stock of turkeys, chickens and hogs,” says Crista. “And we’re having trouble with cows hemorrhaging when they’re fed moldy feed. It’s a big deal in the animal world, but that’s not translating into human medical care.”

Because of this lack of research and urgency, there’s no comprehensive testing for a diagnosis. “You're trying to put together a picture, but there's no definitive and mainstream test for mold. So that makes it really complicated as a doctor.” Instead, doctors have to test for indicator markers of inflammation, or run a Mycotoxin test from an independent laboratory, which most don’t know to do.

To further complicate the situation, even if a doctor is willing to do some digging for the root cause of the symptoms that a patient complains of, standard blood panels can present as completely normal because mold toxins don’t hang out in the blood. According to Crista, the blood vessels are the one place that our bodies try to keep clean no matter what. Because mold toxins are fat soluble, they instead soak into the many fatty parts of one’s body, like the brain, extracellular matrix of cells, or visceral fat, leading to inflammation in those systems.

This is also why mold-illness manifests in so many symptoms across the body. “When you’re medically trained, when you hear fat soluble, you understand that means our brain which is mostly fat, it means our gut lining, which is mostly fat, it means our bone marrow, the lining of every cell in our body, the lining of all the mitochondria, all of our nerves, the spongy parts of our joints, the coatings of our glands,” says Crista. “So when you start to really think about what fat soluble means, now you're realizing, oh my goodness, what isn't it touching? There’s not one system that isn't using fat in some way. We are a macrocosm of our microcosms.” In short, where there’s fat, there’s a place for mycotoxin storage, which can wreak havoc on basically every system of the body.

THE SCIENCE BEHIND IT: WHY DOES MOLD MAKE YOU SICK? WHO GETS SICK?

Mold-related illness is not the same for everyone. Illness can be caused by exposure to the mold itself, called mold spores. Often times this manifests as an allergic reaction to the mold that can clear once that person is no longer exposed to the mold. “First you have the mold spores, which definitely irritate the respiratory passages throughout—the sinuses, throat, lungs,” says Dr. Crista. But most patients are not sick from the mold itself. Instead, they are sick from the toxins that the mold releases, called mycotoxins.

According to Dr. Crista, 75-80 percent of the mold-sick patients in her practice have been made more sick by the mycotoxins than the mold spores. And mycotoxins can remain a problem well-after leaving a moldy environment. Some mycotoxins are so dangerous that they have been used as chemical warfare agents.

When there’s mold in an indoor living environment, these powerful toxins can become airborne. The toxins are microscopic, invisible to the naked eye, and so tiny that they can flow freely through building materials. If there’s a mold problem hidden behind drywall, or under floorboards, the mycotoxins can still pass through, invisibly infiltrating the air supply. They can then enter the body by inhalation, absorption through the skin or eyes, or by unconsciously touching surfaces that they land on. Once absorbed, a body’s reaction to the toxins is different based on that person’s genetic makeup.

Enough mold exposure could make anyone sick, but 25 percent of the population have a higher susceptibility to illness from mold toxins due to a genetic predisposition called HLA-DR genes. Their bodies lack the signaling response that would normally flag the toxins, causing their detoxification systems to bind and eliminate them. Instead, the toxins are absorbed and move freely throughout the body, residing in tissues and fat. When the toxins enter those cells, they set off a systemic and severe inflammatory response often referred to as a “cytokine storm.” Immune “messengers” in the body activate to try to rid the foreign invader, but because the body can’t detox the toxins, it’s left in a chronic inflammatory state.

According to Dr. Nathan, most cases of mold illness come down to whether or not that person is genetically blessed with genes that enable his or her body to detox mold toxins. “One or two individuals in a home or workplace can be profoundly affected by mold toxins while others in the same environment are perfectly fine,” says Dr. Nathan. “You can understand how people might assume incorrectly that this reaction must be psychological.” A family living in a moldy environment can have completely different experiences depending on their genetic makeup.

For those who are genetically predisposed to get sick from mold and are living or working in a moldy environment, the toxins will continuously build up internally leading to that chronic inflammatory state. According to Dr. Nathan, “Chronic inflammation is the cardinal issue creating the myriad of symptoms that complicated patients are wrestling with.” The inflammation directly impacts immune regulation, hormonal balance, thyroid function, adrenal levels, brain, nerve, and gut function, and more. Battling this condition after diagnosis includes removing the toxins from the body and then repairing all of the associated secondary conditions. But before you can do any of that though, you have to get rid of the mold source.

TREATING MOLD-RELATED ILLNESS

The first step for healing from mold-related illness is leaving the moldy environment. This is one of the most difficult realities for patients to come to terms with after getting a diagnosis because it often means selling your home, or spending hundreds of thousands of dollars on mold remediation with no guarantee that the environment will be clean enough for the sick person to live in again.

Not only is moving a priority, but getting rid of belongings is another necessary step for most sensitive individuals. Airborne toxins land on all surfaces, contaminating them. While some surfaces like glass can be cleaned, anything porous like couches, beds, and carpets are impossible to fully decontaminate. Dr. Crista says, “If you think about every time you sit down on upholstered furniture, that foam pushes out air and then every time you stand up it sucks in air from the environment. And so that's really hard to get mycotoxins out of that depth of a spongy material.”

Some mold experts recommend that sensitive patients treat their home as if there was a fire, getting rid of everything including electronics, clothing and family heirlooms. “When they told me I’d have to get rid of the contents of my apartment it was like the words didn’t even hit me. They went in one ear and out the other,” says Morgan. “It wasn’t until my mom texted me pictures of my things in the alley by the dumpster that the gravity of my new reality set in and it dawned on me that I wouldn’t be going back to the apartment I had so many memories in and I was losing almost everything. I completely lost it. For the first time, I felt truly helpless.”

Dr. Crista describes this as heartbreaking for her patients. “All they see is loss, because they’re in the midst of loss of health, and then they have to lose their homes and then lose their stuff.” The financial burden is also suffocating. Which is then made even worse because most of mold treatment is not covered by health insurance policies, leaving patients responsible to pay out of pocket for treatment.

Once a patient is out of the moldy environment, the next step in many treatment protocols is to start binding the mycotoxins with medications and supplements that grab onto them for excretion. Some of these include the old-school pharmaceutical cholesterol medication Cholestyramine, or natural options like activated charcoal and zeolite clay.

Patients then need to treat all of the additional conditions and illnesses that the mold-exposure triggered and reduce their levels of systemic inflammation. It’s common for mold patients to have activated autoimmune diseases, viruses, chronic Lyme disease, thyroid disorders, all as a result of the mold exposure.

According to Dr. Crista, mycotoxins are immunotoxic in a number of ways, which means that they are toxic to the immune system. The inflammatory state of mold and mycotoxins triggers bad gene expression, allowing a previously dormant autoimmune issue to activate. Mycotoxins are also extremely smart and can rewire the DNA of our immune system making us more susceptible to them. “As a consequence, we also become more susceptible to any chronic low-lying infection or any new infection that we might come across,” says Dr. Crista. “Your immune system is running on such low resources.” While every patient’s timeframe is different, it can take some patients years to fully heal. Some will go on to have life-long sensitivity to mold, while others are able to reset those pathways.

How common is indoor mold toxicity?

While it’s easy to associate mold toxicity and water damage to houses affected by hurricanes or a flooded basement, what many don’t realize is that toxic mold can grow in indoor environments that appear to be perfectly clean. It’s often the slow and hidden water leaks that can cause a significant toxic mold problem.

The source of indoor molds is moisture, and discovering the source of the moisture is the first step to resolving any mold growth. This must happen swiftly as mold starts growing within 24-48 hours of water intrusion. Yet, if the source of the mold is hidden behind drywall or under floorboards, for example, it is almost impossible to catch in time. A slow-drip leak under the sink that goes unnoticed can contaminate an entire living environment.

Morgan's bedroom upon move in appeared extremely clean.

Andrea Fabry is a former journalist and certified Building Biology Practitioner. She has become an expert after her own experience with toxic mold illness. She is the author of Is Your House Making You Sick? Fabry says, “This is one of the most overlooked aspects of wellness, despite the World Health Organization’s estimate that one in eight deaths globally can be attributed to air pollution—with more than half of those deaths resulting from exposure to household air pollutants.” Fabry goes on to say, “Since many of us spend up to 90 percent of our time indoors, it’s imperative that we remain vigilant when it comes to our indoor environments.”

According to the United States Occupational Safety and Health Administration (OSHA), approximately one in four buildings have had enough water damage to grow mold that disrupts human health. Yet, internationally recognized expert in integrative medicine, Dr. Andrew Heyman, argues that this number is even higher. He estimates that at least 50 percent of buildings in the U.S. have a mold problem.

With 25 percent of the population having a genetic predisposition to getting sick from mold toxins, that could equate to tens of millions of possible cases. “Mold toxicity is more common than is currently recognized,” Nathan said. “Those who are knowledgeable in the field estimate that millions of people are wrestling with this problem but are entirely unaware of its existence.”

While homeowners are responsible for addressing and preventing mold growth, stressful situations arise when landlords in rental units do not take this problem seriously, putting their tenants in harm’s way. Landlords are responsible for upholding habitable living environments. An apartment infested with toxic mold would clearly violate this standard. Yet in many cases, landlords will try to conceal the problem, painting over signs of water intrusion and re-renting units to new tenants without disclosing past issues.

In Morgan’s case, her mold inspector told her that there were obvious signs that Regal Rita's property owners had continuously repainted over mold growth. He could see that, “The mold was growing through the walls.” According to Morgan, “We don't know if the property owners remediated, but I have friends that live in the building and said they haven't. And that sets me off the most because we let them know it was an unsafe place to be and they still let new tenants move in.” Morgan is in legal proceedings with the property owners who haven’t yet shared their defense and explanation for what happened. “My personal guess is that they knew, and are trapped in a way,” says Morgan. “I didn’t want to get into a lawsuit, but I ultimately had to. Almost none of my treatment is covered by insurance, and I really want them to fix the problem in the apartment so that this doesn’t happen to anyone else.”

Morgan is now two years into her health journey, and still treating her illnesses. Since her initial diagnosis, she has had improvements as well as setbacks. “After seeing six doctors I still didn’t feel better,” says Morgan. “I went through a lot more low points than I would have expected. Then I got in touch with you and you connected me with your doctor. Right now is the best I have felt mentally and physically.” She attributes much of her recent improvement to a treatment plan from her current practitioner, Dr. Erica Lehman, an integrative physician in Los Angeles.

Morgan still has days where her symptoms will come on, seemingly for no reason. She also has an intense sensitivity to any mold exposure. “Immediately when I walk into a room, I will know if there is mold. I will get headaches, my eyes get itchy and within a few minutes I start to get foggy.” This super-woman like ability to detect mold instantly is a warning sign that helps Morgan protect herself from any future additional exposures. "It's like I have a dog's nose. I can sniff it out instantly."

Morgan's Apartment Visual Inspection Report

Morgan's visual mold inspection showed several areas with water intrusion issues and apparent mold growth. Later, air and sample tests would confirm the toxic mold growth throughout the apartment.