Issues → July/August 2007 → Feature Stories →
Lyme Disease: One Woman's Journey
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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 diease: Borrelia burgdorferi, the corkscrew-shaped bacterium that spirals its way into humans from the mouths of ticks.
Reader Comments
Comment from Donna Zuk on June 6, 2008
I have Yankee magazine emailed to me every month, but in June last year I moved back to Connecticut after spending 2 years in North Carolina near my grandchildren and missed this article until now. I have been having weird ripping pains in my hands that heal in about 4 days only to return. I could hardly hold a pen today with sharp pains shooting in my hand whenever I tried to do normal activities. After a year of this, and it not getting better today after my usual 4 days or so of healing, I decided to go to the walk-in. I have lab work that I have to get done, and I noticed a Lymes disease test.
Funny thing I thought. Many years ago (16) a doctor tested me for hypothyroidism, Lymes, and Epstein Barr/mono. The Lymes and thyroid tests were negative. The Epstein Barr titer test was positive. I was diagnosed with Chronic Epstein Barr.
Years later after getting a tetanus shot, weird things began happening. Pain, severe pain, muscle spasms and muscle jerks spread all over my body, then 2 months later burning, boiling pain. Tender pain I used to call "it feels like raw hamburg pain." Then if I did some sit ups, I would have serious tender pain between my muscles and rib bones. I'd say, it feels like someone hit me with a baseball bat multiple times. My exhaustion for years continued. I would wish for death. I would cry from the pain and exhaustion. I didn't want to be in a relationship so they wouldn't have to deal with my limited life.
After seeing multiple doctors, I was diagnosed with fibromyalgia. I always feel sick. I have a hard time getting up in the morning and a hard time falling asleep, or staying asleep. I always hurt.
I came home tonight with thoughts of the meaning of my painful hand symptoms and what they might have to do with Lymes disease? I began my internet search again. Again I was reminded of another search I had done, and the tell-tale sign of the bulls eye rash. It's a funny thing because I had that once... (27 years ago) more than one on the same leg, so I counted it out. It was more than one area so it can't be Lymes. The Lymes test was negative, and there was also more than one bulls eye area at the same time (and it didn't get better). Then I read on the net, you can have more than one even if there's only one bite.
Ok, so now I continue searching trying to find any type of bite that might have the look of my bulls eye. My bulls eye was not the red rash. I distinctly remembered mine were bruises. You can imagine after all these years of never mentioning it to a doctor. I am now a nurse, (and after 19 years of nursing at 50 years old going back to college because my repetitive 'injuries' and exhaustion is making life miserable if not impossible at times) I was not a nurse when I had these bulls eyes but niether was I taught about lymes disease in nursing... never mind atypical BRUISE-type bulls eyes! Thank you so much for this article, and please, please thank that nurse!
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