Fungus malpractus

When the new blood test results came back, Andrea Bell of Sacramento felt an ironic sense of relief. Although another patient might feel differently if told he or she had abnormally elevated levels of toxic blood contaminants, Bell felt vindicated.

For months, she and her 10-year-old son, Andrew, had been suffering from persistent flu- and cold-like symptoms, intense aches and pains in their joints, chronic fatigue, memory lapses, difficulty concentrating, and coordination, equilibrium and respiratory problems. Andrew also had recurring nosebleeds and nodule-like growths in his throat. And Andrea said she would often stagger from room to room, choking and vomiting.

They had both been to several doctors who, Bell said, all misdiagnosed their conditions. She had been examined and her blood tested, but nothing abnormal was found.

“When they did the tests and it showed nothing, I felt like, ‘What do you mean nothing’s wrong with me?’ ” she said. Bell was told that her symptoms were essentially all in her head. “They said everything physically was OK. [They said] ‘You’re depressed’ and they wanted to put me on medication.”

One doctor prescribed the anti-depressant Zoloft, which, she said, made matters worse. Another suggested a powerful prescription sleeping pill, which Bell felt was absurd. Sleeping was not a problem. If anything, she slept too much: “It was as if I was in the [poppies] from the Wizard of Oz.”

Andrew had also been examined and tested by a number of physicians. According to Bell, she was told the growths in his throat would clear up on their own, and a skin test for allergies indicated that Andrew didn’t have any. An allergist prescribed an inhaled steroid medication for Andrew’s respiratory problems, which, Bell said, had no effect on the symptoms.

But blood testing can be done in a number of ways, and will reveal different information depending on the directions given to the lab by the treating physician. The latest tests on Bell and her son were conducted to the specifications of Dr. Vincent Marinkovich, a Redwood City-based allergy and immunology physician, recognized nationwide for his work with patients who have medical conditions stemming from exposure to toxic mold (see “When Good Mold Goes Bad,” SN&R February 7, 2002).

The testing method, originally developed at Stanford University, measures the specific antibodies produced by the immune response of the body when it has been exposed to toxic mold. The new test results indicated that Andrea and Andrew Bell had excessive, unhealthy levels of several varieties of toxic mold in their systems, levels that help to explain the array of incapacitating physical and mental symptoms they had been enduring.

The Bells had already suspected their rented duplex had a mold problem, particularly after some friends noted the musty smell in their home and suggested it could have something to do with their health problems. A lawsuit against the landlord is still pending, but the Bells say their main concern has always been with feeling better.

The identification of the cause of the Bells’ maladies has enabled seemingly effective treatment to begin, and their diminished health to slowly improve. A follow-up blood test has shown significant improvement. However, due to the severity of the condition—known as systemic fungal disease—the treatment could take a year or more to complete.

Toxic mold has emerged as a major political issue in the last year, receiving some high-profile attention. It is usually caused by construction defects that prevent proper drainage, something exacerbated by airtight, energy-efficient construction methods. The exponential growth of the toxic mold problem has affected homeowners, renters, office workers and schoolchildren.

Yet Bell’s ordeal illuminates an often-unacknowledged aspect of the toxic mold problem: the physical and psychological trauma that many toxic mold victims experience as a result of the misdiagnosis of the illnesses caused by their exposure.

Another largely unpublicized aspect of the issue relates to treatment. The same successful treatment regime that Bell is convinced is saving her life, and that has helped many of Marinkovich’s other patients, has been questioned by a health maintenance organization and other insurance companies.

Because she doesn’t have health insurance, Bell has borne the cost of her treatment. But Marinkovich said an HMO that many of his patients belong to will often deny coverage for a key aspect of his treatment, a relatively expensive anti-fungal pill known as Sporanox. The veteran mold doctor is convinced that the HMO’s refusal to authorize the treatment is motivated solely by corporate greed, and has encouraged his patients to contest the treatment denials.

The dispute escalated last year when a malpractice complaint was filed against Marinkovich with the California Medical Board. Although the board will not disclose who submitted the complaint, Marinkovich believes it originated from the same HMO that repeatedly denies its members reimbursement for his treatment. As a result of the complaint, two months ago Marinkovich was required to attend a meeting with a California Medical Board representative to defend his toxic mold treatment practices.

“They’ve got me defending myself against these allegations,” he said, “these investigators and these insurance companies that don’t know the first thing about my patients and what I’m trying to do with them here.”

In October 2000, talk radio medical authority Dr. Dean Edell made a wish: “I hope this mold issue is nipped in the bud real soon because I don’t see how anyone can prove that a moldy work space or corner of the home can cause an illness,” Edell wrote in a column for HealthCentral.com, dismissing the mold issue as over-hyped by lawyers intent on making money from mold litigation.

“[I] only hope the scientific evidence will eventually win out over lawyer scare tactics,” concluded Edell. But almost two years later, excessive levels of mold in workplaces, homes and schools have been shown to cause illnesses. And while some lawyers capable of taking on complicated and expensive toxic mold litigation have made money, blaming them for the problem is somewhat akin to shooting the messenger.

Yet many doctors, like Edell, continue to be skeptical. While Marinkovich on the West Coast and Dr. Eckhardt Johanning in New York consistently and successfully treat toxic mold patients, most doctors simply are not up to speed on the issue.

“These molds can play a very vicious role in that patient’s life, and [doctors] don’t recognize it because there just isn’t enough awareness,” said Marinkovich. A diplomat of the American Board of Allergy and Clinical Immunology, Marinkovich is anxious to get the word out to other doctors and last year gave a lecture on mold hypersensitivity to the American Academy of Allergy. “There aren’t many doctors in the country who understand mold hypersensitivity, [but] I’m trying; I’d like to educate doctors about it,” he said.

But the extremely candid Marinkovich also opines that some doctors may have a somewhat less than ethical motivation to remain ignorant. In particular, he singles out his fellow allergist physicians as responsible for much of the problem of misdiagnosis. According to Marinkovich, one obstacle to accurate diagnosis is that allergists often use unreliable skin testing instead of blood tests, and utilize ineffective treatment regimes on mold patients in order to maximize profits.

“[It’s a] conspiracy the allergists of the United States have against blood testing because it’s such a lucrative paradigm that they have, where they do skin testing on everybody and they give shots twice a week,” he said. “And they earn incredible amounts of money doing that.”

Because mold doesn’t generally show up through skin testing, allergists are prone to misdiagnose mold-related problems. “So patients generally don’t have any place to go because they go see an allergist and a lot of the allergists just do skin testing and look for pollen problems and miss the mold problem completely,” he said. Which, among other things, is what happened to Andrea and Andrew Bell.

Dr. Harold Ochsner, a Long Beach allergy physician and spokesman for the California Medical Association, said he represents the viewpoint of allergists in the mainline medical community. Ochsner concedes that allergy testing can be less than accurate.

“In most cases, the allergy test doesn’t tell you what is wrong with the patient.” But he said his conclusion applies to both skin and blood testing. “Allergy testing, by any means you choose to do it, is somewhat of a shot in the dark,” he said.

Ochsner takes issue with the accusation that he is getting rich in the allergy treatment business: “I would love to have [Marinkovich] come down and show me where the money is.” Ochsner said he has not seen enough scientific and clinical studies that establish the alleged link between toxic mold exposure and serious illness. “I’m not sure that the scientific data is there, but that doesn’t mean that [Marinkovich] is wrong.”

When the mold problem is missed, other doctors will often dismiss the mold-related symptoms as psychological, prescribing an anti-depressant or offering a referral to a psychiatrist. Marinkovich said this scenario is also not uncommon: “What a lot of the doctors are trained to believe is that if you can’t fit the patient into something easy that you know of, or if the symptoms are such that you don’t understand them, then you make it a mental problem.”

Marinkovich said dismissing symptoms as psychological can be hard on the patient. “They think they’re going crazy. ‘What’s the matter with me, the doctors all say I’m going crazy?’ It’s pretty disconcerting and makes it hard on a person.” And the broader issue of trusting what a patient tells a doctor also concerns Marinkovich. “[It] surprises me, this kind of disbelief in what the patient [says]. I think it’s not becoming to those doctors who take the attitude that patients cannot be trusted, that patients are malingerers, that kind of thing.”

Ochsner concurs with Marinkovich on this point: “I think he is unquestionably correct [that we should] listen to patients better than we sometimes listen to patients. I think we as allergists can be tarred and feathered for that error on our part.”

Bell became so frustrated by the inability of her previous doctors to diagnose what was wrong with her that she prepared to die.

“I wrote my will. I knew something was wrong and I couldn’t figure out what it was,” she said.

Because the doctors said her problems were not physical, her friends and family also questioned her sanity. “They told my sister it wasn’t that big of a deal, and my sister went with that, because, you know, everyone believes the doctor,” she said.

But then she ran into an old friend who had had a similar experience with toxic mold in her home and was now under the care of Marinkovich. She called his Redwood City office and was instructed to undergo the blood test. When the test results came back, an office visit was arranged. She immediately began to feel hopeful when she was filling out the standard new patient paperwork in the lobby.

She had been through this drill before, but this time it was different. It was the questionnaire that has a list of possible symptoms and asks the patient if they have experienced any. To Bell, the list of symptoms was a revelation. “I was like YES, YES, YES! How did he know that?” she recalled.

After reviewing Bell and her son’s medical histories and prior recommended treatments, including Andrew’s allergy medicine, Bell said Marinkovich “threw out” their prescriptions, explaining the medications could actually exacerbate their conditions. He also put the mother and son on a strict diet free from any foods that could contain mold, such as certain cheeses, breads, mushrooms and anything that contains citric acid—derived from aspergillus, a strain of mold—as a preservative. And when the second blood tests done several months later showed that the treatment regime had significantly lowered the levels of toxic mold in their bodies, they were elated.

Bell says she is gradually becoming her old self, and that her son has noticed the change. As they were leaving from their last appointment from Marinkovich’s office, Bell says Andrew took the doctor aside.

“You know what? God’s got a special place for you in heaven. He’s got a chair with your name on it,” she overheard her son say. “He knew that that doctor made me better; he was so scared that I was dying and he was feeling the sickness himself. It was his way of saying ‘You’re helping me and I know it.’ ”