At first no one believed the mom from Lyme. Polly Murray moved with her family to the Connecticut River town in the late 1950s and within a few years began experiencing mysterious symptoms. There were rashes, migraines, recurring fevers, and severe joint pain including a swollen knee. Over the years her children and even the family dog had similar ailments. Doctors believed it was all in her head, and she agreed to a psychiatrist’s suggestion to obtain three weeks of inpatient treatment.
By 1975 her two sons were diagnosed with juvenile rheumatoid arthritis, but neighbors had children with similar ailments, and Murray, who died last year, didn’t believe the occurrences of this rare condition in children were a coincidence. Murray and another mother reached out to the state Health Department and the Yale School of Medicine.
A few months earlier, a 33-year-old doctor named Allen Steere had started a fellowship in rheumatology at Yale School of Medicine. Steere had spent the previous two years investigating disease outbreaks as an epidemic intelligence officer with the Centers for Disease Control in Atlanta. State officials thought he would be the ideal person to investigate these cases. Steere asked Dr. Stephen Malawista, who headed the rheumatology program at the Yale School of Medicine, for permission to start.
“He said, ‘Fine, why don’t you take six months and see what you can do?’ It’s now 45 years later, and I and lots of other people are still working on this,” Steere says.
Steere, now a professor of medicine at Harvard Medical School and director of translational research in rheumatology at Massachusetts General Hospital, began contacting parents who had children with joint pain, particularly knee pain. Consulting with school nurses in Lyme and surrounding communities, Steere identified 39 children and 12 adults with this unexplained rheumatoid arthritis in Lyme, as well as neighboring Old Lyme and East Haddam. “It was clear that they had inflammatory arthritis,” he says, but the condition was occurring far too frequently in the area, particularly in children. “If you had one child in that Lyme, Connecticut, area that had inflammatory arthritis, maybe that’s what you’d expect, but not 39. Moreover, there was clustering within certain areas. There were a couple of roads where 1 in 10 children had this type of inflammatory arthritis.”
It was apparent “that this was something different than had been seen before and described in the medical literature, and we began to call it Lyme arthritis,” Steere adds.
Through contact tracing, Steere learned that most cases had occurred in the summer and early fall, and there was no evidence of person-to-person spread. Twenty-five percent of the patients remembered having a strange skin lesion shortly before they developed symptoms. Around the same time, Steere learned from a Danish dermatology resident at Yale that a similar skin lesion called erythema migrans had been known in Europe for years and was caused by a tick bite.
Residents told Steere that as recently as the 1960s there were no ticks, but that the area had been inundated with them by the 1970s. This was due to massive swaths of farmland being converted back to forests, which supported tick and wildlife habitats. By 1976 Steere and his fellow researchers put forth the belief that ticks were responsible for spreading the infection. In 1981 a researcher at Rocky Mountain Laboratories named Willy Burgdorfer identified the bacteria that causes Lyme. Meanwhile, Steere helped to research early antibiotic treatments for the disease.
Though Lyme emerged from the wilds in Connecticut in and around the 1970s, it was not a new disease, Steere says. There are descriptions of what sounds like Lyme disease in writings from the 1600s and confirmed cases of the disease found in preserved specimens in New England and Europe from the 1800s. The 2010 autopsy of Ötzi the Iceman, a 5,300-year-old frozen mummy found in the Eastern Alps in the 1990s, revealed he had Lyme disease.
Despite this historical evidence of the condition, conspiracy theories as to its origins are rampant. The most prominent holds that it was a biological warfare agent developed at Plum Island Animal Disease Center, a federal island research facility dedicated to the study of animal diseases 8 miles off the Connecticut coast. Between 1952 and 1954, the island also served as the headquarters for the Army Chemical Corps. The corps hoped to study biological weapons, but according to credible accounts, never truly pursued its work on the island. In addition, Lyme-like conditions were never studied at the island, and there would be records if they were, as the work that takes place on the island is not classified. In addition, tick specimens from 1945 from the South Fork of Long Island were also found to contain the disease, several years before the island facility opened in the 1950s.
Back in the 1970s, Steere says, “I knew nothing about Plum Island and nobody thought that Plum Island had anything to do with this.” He adds that it wasn’t until many years later that he first started hearing conspiracy theories linking Lyme disease to Plum Island.
Jane Marsh, a lifelong Old Lyme resident, recalls her father being one of the first adults to get the disease. Marsh later got the disease, as did everyone in her family. “We did not suspect that anything came floating across from there to Old Lyme,” she says. She got wind of the conspiracy theory later and, though she never bought into it, Marsh says she knows people in the area who believe it.
The theory has also stretched beyond Connecticut. Last year New Jersey Rep. Chris Smith called for an investigation into whether the Department of Defense experimented with ticks and other insects to deliver biological weapons between 1950 and 1970.
Plum Island isn’t the only controversy associated with Lyme disease. Chronic Lyme is a condition many patients believe they have but which the Centers for Disease Control does not recognize, and which Steere has said is overdiagnosed.
“Lyme disease is a complex infection, there are no two ways about it,” Steere says. “It’s an illness that without treatment can occur in stages with different manifestations at each stage. People can have neurologic involvement, they can have cardiac involvement, they can have arthritis. But it does not cause everything. There are advocacy groups that have grown up that attribute a much wider spectrum of illness to Lyme disease than is the case in mainstream medicine.”
Correction: June 29, 2020
An early version of this story misstated the name of the laboratory where the bacteria that causes Lyme was discovered. Willy Burgdorfer identified this bacteria while working at Rocky Mountain Laboratories in Montana, not the Rocky Mountain Biological Laboratory in Colorado.