The professionals finally able to understand the cognitive and psychiatric fallout of Lyme disease in patients' lives were the psychiatrists. One of the first was Brian Fallon, whose interest had been sparked in the late 1980s while helping a close relative overcome a serious case of Lyme. He had just finished his psychiatric residency and secured a gig as a fellow for the National Institute of Mental Health, stationed at the New York State Psychiatric Institute at Columbia University in New York City. The young doctor—whose kempt long hair, neat beard, and energetic demeanor made him look like he'd marched off the album cover of Abbey Road—specialized in anxiety disorders, with a focus on hypochondria. But news of his interest in Lyme disease had traveled through the grapevine to Lyme patients in southeast Connecticut. Some of them had developed psychiatric disorders after having Lyme disease. Could Fallon follow up?
Fallon drove out to Old Lyme, where the disease had first been recognized, and spent the day meeting with an afflicted group. Fallon was well aware of the single-case studies and series of anecdotes continually published in medical journals. One researcher had even staged the psychiatric manifestations so that they paralleled the neurological disease signs recorded before: In the first stage, mild depression could parallel a fibromyalgia-like illness. In stage two, mood and personality disorders often emerged alongside meningitis (swelling of the brain's lining) or neuropathy (tingling or numbness from damaged nerves). Finally, in stage three, with the onset of encephalomyelitis (inflammation of the brain and spinal cord), the clinical picture might include psychosis or dementia.
Conducting interviews with the Connecticut patients, Fallon learned that depression or panic could worsen after the start of antibiotic treatment, suggesting a kind of psychiatric Herxheimer reaction, an exacerbation of symptoms that can occur when bacteria are killed. Conducting formal interviews with the patients, he found that neuropsychiatric Lyme disease and regular psychiatric disease appeared much the same. This was of particular concern since so many patients failed to notice a rash or register positive on standard tests. Without a correct diagnosis, they might be treated with psychiatric drugs but not the antibiotics that could bring a cure.
Children with Lyme disease can be mislabeled with a primary psychiatric or psychological problem, while the root issue might never be addressed. Take Seth Statlender of greater Boston. At 12, he was so ill he couldn't regularly attend school. He bravely played soccer but felt so sick he threw up in front of his team. One doctor suggested bulimia. "I'm a psychologist," his mother, Sheila Statlender, said. "Throwing up in front of his team and a crowd of spectators doesn't fit the profile. Bulimics purge in private."
Seth's sister, Amy, also started getting sick. First it was a cough, something the pediatrician thought might be an allergy. But the cough continued, taking on a chronic, croup-like quality that was not relieved by nebulizers or other treatments. Finally, a pulmonary specialist suggested cognitive-behavioral therapy for the cough. But Statlender pointed out that if you cough throughout the night in your sleep, it's not a cough habit, which is what behavioral therapy would treat.
Time and again, Fallon, an expert in hypochondria, had seen frustrated doctors dismiss medically ill patients as psychiatric cases due to their own inability to diagnose the disease. With Lyme, the mistake was especially damaging since a delay in treatment could turn a curable, acute infection into a chronic, treatment-resistant disease.
The solution, Fallon knew, was to gather objective evidence of physical damage to the brain. Working with radiologists at Columbia, he found that one useful tool was the SPECT (single photon emission computed tomography) scan, which generated a moving picture of the brain. A radioactive solution was delivered intravenously, then tracked to measure blood flow through the brain. SPECT could show something amiss even when MRI scans appear normal. After treatment, many patients showed improvement on the SPECT scan.
"Doctors can destroy patients by telling them that a true, physical disease is all in the head," says psychiatrist Virginia Sherr of Holland, Pennsylvania, and suicide can be a result. In the Lyme hot zone of Bucks County, she sees a new case of Lyme encephalopathy every week. "I am a psychiatrist. These are not people who are referred to me because they have Lyme disease—they are sent because they have panic attacks, hallucinations, obsessive-compulsive disorder, and depression. They are in agony—not only neuropsychiatric pain, but physical pain as well. They have never been hypochondriacal in their lives, but that is how they are labeled. They are encephalopathic, but they have been told they are not by physicians who wouldn't know a case of encephalopathy if they fell over it. They are physically sick, but are blamed by doctors who say: 'You belong to a cult if you think you have Lyme,' or 'You look okay to me.'"
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