When the doctor gets sick, the journey is double-edged (Part II)

Patients described the same bizarre disease that plagued her.

Posted Jan 16, 2009

(click here for Part I of Virginia Sherr's story)

(click here for Part III of Virginia Sherr's story)

(click here for more on neurological Lyme disease)

 

As psychiatrist Virginia Sherr recovered from the devastation of Lyme disease and its coinfections, she began to view her patients through a different lens -and "listen with a third, even a fourth, ear." Says Sherr: "I began to hear them describe the same symptoms that had bothered me: pains in their back, headache, enormous fatigue, night sweats, sinus problems that wouldn't quit."

For a fleeting millisecond the impossible notion that she, herself, might be infecting her patients flashed through her mind. But her training as a psychiatrist quickly kicked in, causing her to question, instead, whether she had been swept up in a case of reverse transference: Had she, the doctor, imposed her experience and perspective on the patients, instead of the other way around? To rule this latter possibility out, Sherr waited quite a long time before broaching the subject of tickborne disease with patients. But ultimately, she did. "They had significant clinical signs and symptoms and they needed to be worked up. I realized it had nothing to do with me."


Instead, Sherr found her personal ordeal had invested her with a special empathy for patients suffering tickborne disease, alerting her to the range of symptoms, especially the neuropsychiatric ones, that caused patients to seek her out at all. "Afflicted patients whom I see in my office often label themselves as stressed, neurotic, or hypochondriac," Sherr says. "They are slow to believe, even with positive tests, that Lyme disease could be the underlying cause of disparate symptoms stirred up by normal life events -long plane flights, stress, even joy."


One patient, Sherr reports, arrived at her office in a terrified state. Fatigued, confused, and too disoriented to leave her immediate neighborhood, she suffered largely sleepless nights punctuated by "horrific dreams of small animals she needed to kill but somehow couldn't." She'd been to a dozen prior physicians across a range of specialities, and each had confirmed the diagnosis of panic disorder. In light of her personal experience, Sherr saw something more: The woman was so sensitive to light she required sunglasses, and her neck, stiff and sore, made cracking and popping noises. Her face drooped on one side, suggestive of Bell's palsy. Sherr sent her blood out for testing -and while the Western blot was negative, PCR came back positive for the Lyme disease spirochete, Borrelia burgdorferi. A supsequent SPECT scan of her brain was judged to be consistent with a diagnosis of Lyme disease as well. If there was any question about the diagnosis, proof was in the treatment. While psychoactive medication made the panic symptoms more tolerable, only antibiotics were curative.

Another patient, also written off with panic disorder by a host of experts, was not merely panicked. She had migrating pains, severe fatigue, and weakness throughout her body. Her ribs were sore and her joints ached. She also suffered drenching sweats, requiring several changes of clothing during each 24-hour period. Sherr sent out blood work here, too, eliciting positives for Lyme, ehrlichiosis, and babesiosis. Nine months after beginning antibiotic treatment for these infections, Sherr reported, most of the patient's physical and psychiatric symptoms were gone.

Virginia Sherr has published some of her most interesting and well-documented case studies in medical journals. Writing in the Journal of Psychiatric Practice, she described panic attacks in three patients. Notable, according to Sherr, was that each patient "experienced symptoms that are not usual in panic disorder, but are typical of neurological Lyme disease, including exquisite sensitivity to light, touch and sounds, joint pain often in combination with cognitive changes including mental fogginess and loss of recent memory, and some degree of bizarre, shifting, and often excruciating neurological pain."

As Sherr's awareness and clinical experience have increased, so have her concerns. One worry revolves around young people who have gone so long without diagnosis their personalities are literally "pillaged" by Lyme disease even as they are labeled with a host of other psychiatric diagnoses and sometimes barred from normal life.

One patient, a 17-year-old girl, showed up at Sherr's office in a bright orange jumpsuit with shackles on her ankles and wrists. The girl, resident at a juvenile correctional facility, was said to have had a number of bull's eye rashes diagnosed as ringworm years before. But uncharacteristic of ringworm, she also became drastically ill, experiencing paralysis and eventually falling comatose. In the hospital, finally correctly diagnosed with Lyme encephalitis, she had been treated with just 10 days of intravenous medication and sent home. Although she seemed to recover, as time went on, the once-cheerful child had become increasingly oppositional. Now in a juvenile detention center, she experienced not just rages but also the inability to focus and the physical symptoms of multiple joint pains, rashes, headaches, chills and sweats. Since the girl had been treated for a period far shorter than even the most restrictive recommendations, her parents wanted to know if her problems were actually caused by an inadequately-treated, long-smoldering, and continually disseminating infection of Lyme.

After talking to girl and running a series of blood tests, Sherr concluded Lyme disease could, indeed, have caused her problems, from difficulty focusing to rages. The girl was ultimately treated with the standard oral antibiotic, doxycycline. "As the antibiotic therapy continued," Sherr said, "the physical symptoms and the psychiatric ones all began to fade." Based on her medical history, the girl was released from detention shortly thereafter and allowed to go home.

The problem, says Sherr, is that such children "have lost any idea of what they really are like, what they are capable of, or who they could be. They do not remember and have lost track of the person they started out to be. "

(click here for Part I of Virginia Sherr's story)

(click here for Part III of Virginia Sherr's story)

(click here for more on neurological Lyme disease)

Pamela Weintraub is senior editor at Discover Magazine and author of Cure Unknown: Inside the Lyme Epidemic, St. Martin's Press, 2008