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

Psychiatrist Virginia Sherr of Holland PA spent years sliding through the hell of undiagnosed illness with Lyme and other tick-borne disease. After she was finally diagnosed and treated, she recognized the signs and symptoms --some psychiatric, but many more of them physical-- in her patients. This is part III of her story.

Read part I here

Read part II here

Read more about neurological Lyme disease here

Sherr is perturbed by something described to her behind closed doors, in therapy sessions, almost every day: Physician abuse of patients who broach the possibility of Lyme disease. In one instance, a woman very sick with what she suspected was Lyme disease, went for a consultation at the University of Pennsylvania. The doctor didn't think much of the woman's quest for a Lyme diagnosis, and responded with her husband there in the room: "Look at you, just look at you. Ever since you've thought you've had Lyme you've been a wreck. You look terrible. I bet you were an attractive woman at one time, but now I wouldn't blame your husband if he went out and had an affair."

"This woman went to the doctor very sick, very vulnerable, very desperate," Sherr says. "She was devastated -but not destroyed. She was a nurse, and she knew that what the doctor said was horrible, unprofessional, and emotionally ‘off,' so she felt empowered to go elsewhere for a diagnosis and help." She was ultimately diagnosed with Lyme disease by another doctor, and treated until she returned to health. "

Other patients are not so lucky. "Doctors can destroy patients by telling them that a true, physical disease is all in the head," she says, and suicide is one possible result. In the hyperendemic area of Bucks County, PA, Sherr says, she sees a new case of Lyme encephalitis every week and, sometimes, almost every day. "And 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, depression. They are in agony -not only neuropsychiatric pain, but physical pain as well. These are people who have never been hypochondriacal in their lives, but that is how they have been labeled before they come to me. 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 they are blamed for their illness by those doctors who say things like, ‘You belong to a cult if you think you have Lyme disease,' or ‘you look okay, to me.'"

"What has happened to the medical profession I loved so much? What has happened to make physicians step out of the role of healer into the role of destroyer?" Sherr asks. One cause of such behavior, on the part of some physicians, suggests Sherr, may be the widespread belief that anxiety about Lyme disease is the cause of all the pain.

To Ginny Sherr, the theory is harmful, and downright wrong. "When I have a patient who has no notion of what might be wrong and I tell him he's tested positive for Lyme or another tickborne disease, that patient is so happy he lights up like a Christmas tree. Now at last he has a disease that is treatable, now he has hope. The news alone typically makes the patient feel better, not worse." On the other hand, she says, "a lot of people who don't know their true diagnosis commit suicide because they feel they have nowhere to turn, and because they have been led to believe, by doctors, that all hope is gone."

Postscript: Since her interview with me, Virginia Sherr has been reinfected with Lyme disease and a host of its coinfections through another tick bite. The illness was signalled by another classic Lyme disease rash, the erythema migrans. She has been aggressively treated but as with so many patients who have been infected multiple times (my family included), recovery is more difficult each time out. At this writing, she is struggling to regain her health. Despite it all, her practice remains open. "My conscience will not allow me to go forth pretending these patients are not in agony, as if they are not mislabeled, ignored or abused," she says. "As long as they are on my radar screen, I will keep my hand in."

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