Lyme Disease Treatment | One Woman's Quest for Answers
She wasted away to 94 pounds and could hardly walk: “I was so scared. I would see it in people’s faces; I’d be hanging on to my husband’s arm, hanging on to the grocery cart. Me, who was always on a bike or running up a mountain. By that time, there was so much wrong with me, I felt I was dying.”
Lauren was tested for Lyme half a dozen times. The results were negative — but Lyme blood tests are widely known for both false positives and false negatives. In New York, finally, a “Lyme literate” physician, or “LLMD,” determined that she had advanced Lyme disease and put her on a doxycycline derivative. “I was on it a year and a half,” she says. “The medication made me sick to my stomach, and I had to go off it sometimes. But I’m so much better now. Now I’m off the antibiotic and seeing a Vietnamese practitioner in addition to my doctor in Portsmouth. I’m not all the way there yet, but I’m back to work part-time.”
Lauren wasn’t the only Lyme patient I met who has wandered helplessly through the narrow, darkened hallways of conventional and alternative medicine, seeking relief from their myriad symptoms. It turned out to be a rather common story, in fact — one that stretches back in time some 50 years. During my research, I came across a book called The Widening Circle, by Polly Murray. Published in 1996, it tells the story of the early history of Lyme disease.
In 1956, Polly Murray, an artist and housewife in Essex, Connecticut, began to suffer an array of inexplicable health problems. Doctors couldn’t find a cause. While she was pregnant with their second child, she and her husband, Gil, moved across the Connecticut River to Lyme, a pastoral place with views of the big river and of Long Island Sound.
A precise person, Polly kept a record of her family’s complaints. By 1964, they had four children, all suffering from rashes, fevers, aching and swollen joints, and diarrhea. Visits to the doctor were frequent; relief was rare. In fact, thumbing through the symptoms Polly recorded throughout the 1960s, you might think you were looking at the notes of a severe hypochondriac — except that her entire family was suffering from these complaints.
Eventually, doctors suggested a complete workup, including a psychiatric evaluation, at New England Medical Center in Boston. After three weeks of tests and observation, Polly came home with sleeping pills and antidepressants. But she continued recording all that was happening to her. And what was happening to her didn’t stop.
She discovered that other people in the shore area were experiencing the same ailments. She compared notes with Judith Mensch, who lived in Old Lyme, and in October 1975 they called the state health department to report the plethora of symptoms that were plaguing them, their families, and now their neighbors. Polly asked for an investigation. When she told her doctor what she’d done, he was furious and accused her of “stirring up trouble.”
Nevertheless, on November 20, 1975, she was referred to Yale University to consult Allen Steere — a rheumatologist who had spent his first two years out of medical school working for the Epidemic Intelligence Service (EIS), an arm of the CDC. Steere showed a deep interest in her case and wanted all her notes. She also gave him the names of other people she knew who were suffering as well.
By early in the new year, Steere had recorded 39 children and 12 adults from the Lyme area who were experiencing these symptoms — all of which he connected to the bite of a tick, and which he collectively called “Lyme arthritis,” a term that was later broadened to “Lyme disease.”
On a national television news show, Steere explained the epidemic. Irate that their town was now on the map for unwelcome reasons, Lyme residents accosted Polly again and again. Fear spread that the town’s real estate values would plummet.
From that small circle grew an epidemic of similar stories — people with elusive symptoms that could not be conclusively diagnosed. Doctors surmised that they had fibromyalgia, multiple sclerosis, amyotrophic lateral sclerosis (ALS, or Lou Gehrig’s disease), lupus, and sometimes Parkinson’s. Yet this mystifying tick-borne illness was little known outside the growing number of Connecticut and Long Island shoreline communities where it was prevalent.
In April 1979, a dramatic increase in the number of ticks was recorded in Lyme and its environs. The Connecticut Agricultural Experiment Station, however, was inexplicably quoted as saying that ticks were “new to the state.” They certainly were not new to Polly and her neighbors. By then, they had been plagued by ticks for more than 20 years.
Polly’s experience sounded alarmingly like Lauren Lemay’s. But I had to remind myself that a half century had passed in the meantime. I shook myself back into the present and drove to New Haven to see a tick specialist.
Kirby C. Stafford III, Ph.D., the Connecticut state entomologist, sits in his office at the Agricultural Experiment Station in New Haven, more than willing to talk about his favorite subject. A picture of a deer tick (Ixodes scapularis, also known as I. dammini, or the black-legged tick), blown up to almost human proportions, adorns his wall. Under magnification, the creature looks powerful and indestructible, like a prehistoric tank. It is, he tells me with almost paternal glee, “the ideal parasite.”
Stafford gestures to his wall of filing cabinets: “Ticks, Lyme disease — I’ve been in it 19 years. The Polly Murray thing happened in the mid-’70s. Allen Steere published his first paper in 1977, and the organism itself was discovered in 1982. After that, things proceeded rapidly.” He’s telling me about the cause of the disease: Borrelia burgdorferi, the corkscrew-shaped bacterium that spirals its way into humans from the mouths of ticks.