Mold toxicity is a frequently misdiagnosed medical condition. Marissa—the poster child for misdiagnosis—had consulted over twenty different healthcare practitioners in Santa Fe and had received nearly twenty different explanations for her constellation of debilitating symptoms, along with multiple remedies.

By the time Marissa came to me, she had nearly depleted her retirement funds in her desperate attempt to find answers. When she called to make her initial appointment, I could detect a slight accent. Her voice sounded soft and tentative.

“Doctor, I want to make an appointment to come in and see you, but I first need to ask if you know how to treat for heavy metal toxicity.” Based on what the previous healthcare practitioner told her, she had become convinced that heavy metals were the cause of all her problems.

“Yes, I do know how to treat for heavy metal toxicity,” I reassured her. “But first I need to take a complete history and see if that is what’s really going on.”

I knew the cost of the appointment concerned her. To save time and money, I suggested she prepare for her appointment by writing a complete medical timeline, in bullet form, from the time of her birth to the present. I asked her to include any physical or emotional trauma she had experienced, and any known toxic exposures—beyond the usual toxins we are all exposed to on a daily basis. I also suggested she include a list of everything she ate and drank during a typical day—including snacks—along with a list of the supplements she took regularly. At the end of the timeline, I asked her to write a detailed description about how she felt at the present time and what she wanted me to help her with.

Marissa presented me with an impeccably written three-page summary of her medical life. She grew up in southern Spain without any major health problems. At the age of nineteen, Marissa took a slow boat to the States where she traveled around the country by herself and ended up staying in the States to go to college. In her senior year she met an American student whom she eventually married. They had no children. Marissa went on to graduate school, got her PhD, and ended up working for 25 years as a professor of Spanish studies at a small college in the Midwest.

After her husband died from an aggressive form of prostate cancer, Marissa was overcome with grief. She decided to retire early and devote the next phase of her life to spiritual pursuits.

Marissa heard about an internationally-known spiritual organization (whose name I will not mention) with a branch in Santa Fe. She felt attracted to this spiritual group and wanted to become a member.

The leader of the sect had his headquarters in London. He heard about Marissa wanting to join the group and suggested that she be given free lodging in the Santa Fe house they owned where members gather once or twice a week for ceremonies, prayers, meditations, and a group meal now and then for special occasions. In exchange for free lodging, Marissa agreed to keep the place clean, prepare for the gatherings, and make sure everything functioned properly.

By the time Marissa came for her initial appointment she had been the caretaker of the spiritual house for two years. When I asked her how long she had been feeling bad, she said the symptoms began a few months after moving to Santa Fe. Her list of symptoms filled nearly a whole page. The most serious included crippling fatigue, migraine headaches, hot flashes (unrelated to hormones since she had sailed through menopause six years earlier without a problem), chronic sinus infections (for which she had been treated with multiple courses of antibiotics), inability to concentrate, forgetfulness, poor memory, difficulty making decisions, moments of confusion and disorientation, crying spells, and chronic anxiety.

Marissa sat across from me, looking gaunt and exhausted. She had dark rings under her eyes and sallow-colored skin. Her cheeks and ears were bright red. I noticed Marissa’s eyes filled with tears throughout the appointment. Her speech was slow and labored, as though she was not able to easily turn her thoughts into words.

“Your list of symptoms, given their relatively sudden onset after coming to Santa Fe, are not likely to be related to heavy metal toxicity—even though your heavy metals are somewhat elevated. I suspect there is something more immediate we need to deal with, like something toxic in the house you are care-taking.”

I asked if there had ever been water leaks. She said there had been quite a few that happened before she began her caretaking job. She said the leaks had all been repaired and there were no signs of water damage.

Knowing that mold can grow between the internal and external walls and that the spores release mycotoxins that can pass right through the wallboard into the living space, I recommended that Marissa tell her group about my concerns and ask for funding to get the home inspected for mold, toxic chemicals, and gas leaks.

At the follow-up appointment, Marissa let me know that her group would not pay for the home inspection. Since none of them felt any bad health effects from being in the home, they doubted that it was the cause of Marissa’s problems. They also claimed that New Mexico did not have any serious mold issues because of the dry climate and that there were no signs of mold on the walls or ceiling, and all the leaks had been repaired.

The group leader said the organization would pay for her to get counseling instead. They assumed that her many symptoms were probably a delayed grief response to the death of her husband.

Marissa believed that maybe her group was right and that she needed to see a psychologist. I said that whether she needed counseling or not, she needed to find what was making her physically sick.

I showed Marissa the results of her lab tests. Her white blood cell count was abnormally low, suggesting something was suppressing her bone marrow. Even more concerning were the elevated liver enzymes that meant her liver was inflamed. The test for the hepatitis viruses was negative, suggesting her liver was reacting to something significantly toxic.

Although Marissa was clearly cognitively impaired, I finally managed to convince her of the gravity of the situation. She gave me permission to write a letter to the leader of the group in London and request that he send payment to cover a home inspection from someone adequately trained for detection of mold, volatile organic chemicals (VOCs), and gas leaks. I made the following points:

• Although New Mexico is a dry climate, we have some serious mold problems in this state due to the construction of the homes with the flat roofs and the canales for drainage. And, precisely because of the dry climate here, many of the strains of mold produce deadly mycotoxins to compete with other molds and bacteria for limited food and water.

• The observation that there are no signs of water damage in the home does not mean that a mold problem does not exist.

• With a past history of water leaks that were not repaired immediately and the damp areas that were not dried out thoroughly, there is a high likelihood that there are mold spores between the interior and exterior wall. Mold colonies can establish themselves if the area remains moist for more than 48 hours.

• Even if the mold spores are “dead,” they can still produce mycotoxins that are so small—one-tenth of a micron—they can pass right through the wallboard into the rooms.

• The fact that no one in the group feels any symptoms does not prove there is not a mold problem. The visitors to the house come for only an hour or two, once or twice a week. Marissa lives at the house day and night.

• Marissa has a penicillin allergy. As a child she had a severe reaction when given penicillin for a cold. This fact suggests she had already become sensitized to mold even before she moved to Santa Fe. Penicillin is a mycotoxin made by Penicillium fungus that has been harnessed for use as an antibiotic that kills bacteria.

• Each person is genetically unique. It is possible that Marissa has a genetic make-up that predisposes her to have difficulties with mold, as seen in her allergic reaction to penicillin.

• Marissa’s lab results are abnormal. To assume that all her problems are of an emotional and psychological nature means that she will continue to get sicker and sicker if her physical state is not addressed properly.

The leader responded by giving his approval for the mold testing and sent a check for $1000 to cover the costs of comprehensive testing. He also gave me permission to select the person I felt was qualified to do a thorough home inspection with appropriate and up-to-date testing.

The mold report from the home inspection showed high levels of Stachybotrys, one of the most deadly strains of mold. When the inspector removed a piece of the interior wall to get an air sample, he saw a heavy growth of “black mold” that extended throughout one wall of the bedroom and throughout the bathroom.

Stachybotrys is a black-colored mold. The public often refers to all toxic molds as “black mold.” In reality, toxic molds come in various colors, including green and orange.

Stachybotrys is prevalent in water-damaged buildings. It produces a deadly mycotoxin that can affect any organ in the body, including the brain and nervous system, and can result in severe, chronic illness—sometimes fatal.

I wrote a note to the leader saying that, based on the results of testing, my patient needed to evacuate the building until the house had been properly remediated by a company trained in mold remediation. I stressed the importance of containment in the areas that are being remediated, so that the spores do not travel throughout the house.

The inspector outlined his recommendations, based on the findings, and included an estimate of the costs that a remediation company would likely charge. I sent a copy of the document to the leader in London and made copies for Marissa to give out to each member of the local group.

No action was taken.

Marissa continued to get sicker and sicker. She heard from the group that the leader felt the remediation was too costly and unnecessary. He insisted that Marissa needed to focus more on her spiritual life and take her mind off her symptoms.

Marissa, in her impaired state, was not able to advocate for herself and easily succumbed to the beliefs of the group about her spiritual deficiencies. She did not want to consider evacuating the house because she said she needed the emotional support of her group. “And besides, where would I go? I think I’m going to just stay in the house and try to do what my spiritual advisor is telling me and focus more on my spiritual life.”

I shared with her something that author and speaker Larry Dossey, MD, had said. I remembered it from a talk he gave at our hospital in 1992—one of the only interesting talks I ever heard during those noontime continuing medical education talks that were mostly sponsored by the pharmaceutical companies. He said, Even saints get appendicitis and cancer.” His talk addressed the potential harm of some of the New Age thinking so prevalent in Santa Fe during those years.

It broke my heart to helplessly watch Marissa sink further and further into chronic illness. As the months passed, she became totally disabled. She stayed in bed most of the day, with the mold-infested wall behind her bed.

Eventually I reached a point of outrage and took it upon myself—without anyone’s permission—to write the leader in London. I did not mince my words. I told him that if something was not done immediately, Marissa would die from lack of intervention. I said that I imagined he would not want her death to be on his conscience.

A few days later, Marissa left a message on my answering machine saying that she had received an airline ticket to London from the leader of the organization, along with a note inviting her to live with his group. He also sent tickets for two women in the group to accompany her, given how sick she was.

The following week I got an email that Marissa had dictated while a friend wrote her words on the computer. She said when she got to London, she reacted to the mold in the building, having become hyper-sensitized to all molds by this time. The leader suggested she camp in the orchard next to the building. Given the frequent amount of rain, the orchard was damp and moldy, but she stayed there anyway because she had no other place to go. She continued to feel terrible. Members of the group brought her food for each meal and they placed a portable outhouse at the edge of the orchard for her to use.

In the last email I got from her, she said she thought she was going to die. She had no energy and had intense pains in her abdomen. The leader said he wanted her to participate in a very important spiritual celebration that included a big feast in the moldy building. She asked my advice. I suggested she not force herself to do anything that didn’t feel right. That was the last I heard from Marissa.

A few days later I got a phone call from a man who said he was a representative from a travel insurance company. He said I was the beneficiary of $30,000. “What??? What exactly do you mean? Is this some kind of scam?”

He said Marissa had bought travel insurance before her trip to London and had named me as her beneficiary. My mind went into a tailspin. I asked for details. The agent said the cause of death was unknown. He asked for my mailing address so he could FedEx the check to me.

As I sat in my office in a state of shock, the agent called again and said there would be no check mailed to me because the cause of her death had not been accidental. The agent had contacted the hospital in London where Marissa had been taken by ambulance. He learned that the cause of Marissa’s death was liver failure. Since her death was the result of a longstanding problem, there would be no payout.

I cried from grief and anger, knowing she could have been helped if intervention had happened sooner. At that point, the spiritual challenge I faced was acceptance of the fact that Marissa was on her own path which led to her premature death. No amount of effort I made could change that. Now I had to let go and rejoice that Marissa was free of suffering at last.

Although I was unable to change the trajectory of Marissa’s life, I want to compost her suffering and turn it into something valuable for all of us. Consider her story to be a cautionary tale.

Mysterious symptoms you or your loved ones might be experiencing are not always from unresolved childhood issues or other psychological and emotional causes. The emotional/psychological factors may certainly be playing a role, but don’t forget to consider underlying physiological causes of abnormal behavior and puzzling symptoms.

When we are desperately seeking answers to our problems, it’s easy to give up our own internal guidance and surrender to “the experts.” In Marissa’s case, she surrendered to her spiritual leader and let him call the shots for her. At some point, we need to trust our own inner wisdom.

Amen.