When the doctor gets sick, the journey is double-edged (Part I)
Only the doctor who has been a patient can really understand.
Posted January 9, 2009
For Part II of Virginia Sherr's story, click here
(For more on neurological Lyme disease, click here)
I speak with Holland, PA, psychiatrist Virgina Sherr one brilliant winter day on the Sun porch behind the office she maintains in her comfortable suburban home. Her office, done up entirely in red, suggests the passion that Sherr, herself, puts into almost everything she does. In the area out back, I note equipment for drawing blood. "I have a nurse come in to help," she explains. Testing psychiatric patients for tickborne disease, Sherr says, has become part of the differential diagnosis in her tick-infested neck of the woods. Incredibly, on the bench beyond her window, I note a peacock, its full regalia of colored feathers spread wide. "I have no idea where he came from, but he seems to live here now. I think he must have been a present from the Cosmos."
If Sherr possesses a special reverence for life, it might be because she, herself, has journeyed back from the depths of a once-inexplicable, truly terrifying, illness. The illness, it would turn out, was a combination of Lyme and other tickborne diseases. Sherr's experience, ultimately published in a medical journal, was so surreal it read like an anecdote right out of Oliver Sacks (the pioneering neurologist and author of Awakenings and The Man Who Mistook His Wife for a Hat.) In fact, Sherr's description of her patient experience was so compelling and precise that Sacks himself wrote an introductory note. When physicians experience disease for themselves, Sacks said, a special level of understanding and "a unique double narrative" can result.
Ginny Sherr's Lyme odyssey began when, after gardening near the wooded area surrounding her home, she noticed "a strange red ring forming perfectly" on the skin of her left leg. In the center of the ring, she observed "a glistening black spot," which soon fell away. It was the mid-1980's and Sherr, a woman of robust health, wasn't particularly worried about Lyme disease in particular or personal illness, in general. But when a local physician told her the rash had been caused by a spider bite, Sherr -the daughter in a family of biologists and entomologists-felt unease.
Perplexed because it just didn't seem like a spider bite, she put the whole thing out of her mind -for awhile. It would be a couple of years before Sherr began to feel sick, at all.
First, in 1987, she experienced a severe head cold in the midst of planning a huge event. Instead of passing, as colds are expected to do, the illness continued on in different forms. In the beginning Sherr noticed she was especially tired, but within months she was so fatigued she would find herself literally falling asleep while talking to patients in her office. Then she broke out in another rash -this one widespread across her body. She suffered relapsing remitting sinus problems and sore throats. Eventually Sherr recovered and wondered whether she had -temporarily-suffered from the newly-described chronic fatigue syndrome.
But the recovery was not to last. In 1990. she says, she noticed another red ring on the skin of her forearm. "Again," she reports, "there was a tiny, glistening black dot in the center of the bull's eye." By now having educated herself a bit on the topic of Lyme disease, Sherr understood how tiny the nymphal deer ticks could be. Keeping her forearm outstretched, she raced to the doctor. But again, she was told she had a spider bite. The doctor lifted the black dot off and, though barely examining it, glibly told Sherr it wasn't a tick. His pronouncement could not be verified, for as he spoke, the tiny critter, no larger than a poppy seed, crawled off the gauze on which he had placed it, never to be seen again.
Finally, in 1992, Sherr developed yet another another bull's eye rash -with another tiny black "pearl" at the center. A few months later the same symptoms returned, but this time she had arthritis, too. So Sherr consulted a rheumatologist. Yet he, too, felt Lyme was not a probable diagnosis -not even after learning of Sherr's gardening, and her history of bull's eye rashes centered by tiny black "dots."
And that's when Sherr really dived although, incredibly, despite her own credentials as a physician, the doctors she consulted viewed her as "a whiner:" "I tried to explain that I was in serious difficulty to one physician after the next, as I gasped for breath on exertion, had painful muscle spasms in the thighs, face, and posterior shoulders, and experienced deep, aching, burning pain." Her symptoms became so severe, in fact, that Sherr felt as if "the self I knew was dissolving."
She did not think she would be able to keep up her solo psychiatric practice for long. One day Sherr realized she even lacked the strength to open the door of her refrigerator, and that "not only my future as a physician but my life was teetering at the brink."
It was then that Sherr went to see a new famility doctor, a young man, and, amazingly, he really listened as she went through her bizarre litany of complaints. When she was done, the young doctor paused and said, "I think you have Lyme disease."
After all she had been through, Virginia Sherr was stunned. The clinical diagnosis was prelude to treatment, and despite that fact that her blood test was negative, Sherr was placed on the IV antibiotic Rocephin for six weeks.
At first Sherr got sicker. "A sense of urgency, fear and uncertainty tinged everything," she says. "Routine noises elicited startle reactions." Gradually the treatment restored her vitality, but when the IV antibiotic was stopped at week six, Sherr relapsed, experiencing a relapsing-remitting malaise with sweats that was worse in the afternoon and better at night, reminding her, somehow, of malaria. Eventually, more detailed blood tests showed she was infected with two other tickborne infections --the malarialike blood parasite, babesia, and the intracellular microbe ehrlichia (today called anaplasma in the northeast.) With treatment for all three infections, concurrently, Sherr started to get better for real.
For Part II, click here
Pamela Weintraub is senior editor at Discover Magazine and author of Cure Unknown: Inside the Lyme Epidemic, St. Martin's Press, 2008