In October 1975 something very strange happened to Anne Mensch, an 8-year-old living in the small town of Old Lyme, Connecticut. It started one evening with pain in the knee but aggravated quickly, which resulted in her hospitalization the next day. First diagnosed with a serious bone infection and then with juvenile rheumatoid arthritis, Anne came home from the hospital in a wheelchair.
By the end of 1975, stories like this were becoming shockingly common in Old Lyme and environs. “On some roads, as many as one in 10 children were affected,” Douglas S. Lloyd, the commissioner of health services, wrote in a letter to the state directors of health, in 1976.
But how could so many children in the same town get rheumatoid arthritis, an uncommon, if not rare, disease? That was the question nagging Judith Mensch, Anne’s mother. Unsatisfied by her daughter’s diagnosis, she contacted medical experts at Yale University in New Haven, about 40 miles west of Old Lyme.
Mensch didn’t know it at the time, but she wasn’t the only mother trying to solve this medical mystery. Just a few miles away in the neighboring hamlet of Lyme, Polly Murray had two sons and a husband who were suffering from similar arthritis-like symptoms and desperately trying to get help. After multiple wrong diagnoses from local physicians, Murray got in touch with the state health department and then Yale University School of Medicine. “They [Judith Mensch and Polly Murray] were persistent, whereas others would have said, ‘To hell with it, the doctors are probably right,’ ” says Dr. Jonathan Edlow, a physician and author of Bull’s-Eye: Unraveling the Medical Mystery of Lyme Disease.
At the time, Dr. Allen Steere was a 33-year-old postdoctoral candidate in the rheumatology department at Yale University School of Medicine. In a recent podcast interview with the Journal of the American Medical Association, he recounted the story of Lyme disease and his role in its investigation. Before coming to Yale, Steere had traveled across the country to study outbreaks of diseases as an epidemic intelligence official with the Centers for Disease Control and Prevention (CDC).
So, when Murray came to Yale with her story, Steere was intrigued. Murray had been documenting the symptoms and keeping a record of everyone she knew who suffered from these symptoms. With those clues in hand, Steere visited public health officials and local physicians to find people who had inflammatory arthritis symptoms. By the time he was done, he’d found 51 residents in Lyme, Old Lyme and East Haddam, of which 39 were children. He called the condition “Lyme arthritis.”
Over the years, Edlow says, it became clear that the affliction was much more than arthritis, given that symptoms include skin rashes, facial palsy and heart problems. Lyme arthritis became Lyme disease.
What made medical experts suspect it was something other than juvenile rheumatoid arthritis was the clustering of cases. Often, more than one child in a home would have the disease or multiple children in the same neighborhood were affected, according to news reports at the time. Another fascinating element was the bull’s-eye rash that was associated with some cases, which ultimately helped experts make the connection that the disease might be spread by ticks. A Danish dermatologist at Yale pointed out that the rash was similar to what was described in European medical literature as erythema chronicum migrans, a skin lesion resulting from a tick bite. While Lyme disease was just getting noticed in North America, a variant had been known in Europe for decades. “It’s like two parallel stories were happening — one in Europe and the other in America — marching unbeknownst to each other,” says Edlow.
The heavily wooded areas around Lyme, Connecticut, had a sizable deer population, and hence ticks. It also made sense that cases spiked in summer and fall, when children tend to spend a lot of time outdoors. Entomologists working with the Yale researchers looked at tick populations in the Lyme area and compared them with a control area west of the Connecticut River. Sure enough, there was a significantly higher number of ticks around Lyme.
By 1975 ticks had been identified as the vector, or carrier of the disease, but what caused it remained a mystery until 1982, when Dr. Willy Burgdorfer of the Rocky Mountain Laboratories of the National Institute of Allergy and Infectious Diseases stumbled upon something unexpected while dissecting ticks: spirochetes — spiral-shaped, disease-causing bacteria. These microorganisms were also in ticks found on deer in the Lyme area and in the skin lesions of some patients. The investigation had come full circle. The hitherto unknown bacterium was named Borrelia burgdorferi after its discoverer.
According to the CDC, Lyme disease is the most commonly reported vector-borne disease in the United States. Even today southwestern Connecticut remains a hot spot for infected ticks. Lyme disease originally was considered to be a fairly recent affliction, but new research has shown that it probably existed in humans as far back as 5,300 years ago. The earliest known victim? An ice mummy nicknamed Ötzi, which was discovered in 1991 in the Eastern Alps.