Chautauqua Conversations: The Chautauquan who identified Lyme Disease

The weather reporters called it a July polar vortex, but by any name the weather was unseasonably cold and drove us inside from a capacious porch. Comfortably settled, we reviewed the remarkable career of long-term Chautauquan Allen Steere, who played the violin with Itzhak Perlman and is credited with identifying Lyme disease.

The major remaining insect-borne illness in the United States, Lyme disease afflicts an estimated 25,000 Americans annually. Allen Steere identified Lyme more than 30 years ago, and has led efforts to diagnose the disease and develop antibiotic treatment for it.

His wife of 45 years, Margie, joined our conversation.   

Allen: I guess my involvement with Lyme disease really began when I went to the Centers for Disease Control after my medical residency. I was a member of the Epidemic Intelligence Service, and I had become interested in epidemiology because of an experience near the end of my medical school. I had gone to Africa — to Liberia. I spent two months there and found it to be a life-altering experience. It was just so different.

Vector-borne diseases from insect bites were such a problem in Liberia. It seemed that everyone had malaria, transmitted by mosquitoes. Schistosomiasis was common. It took such a toll. I had originally intended to go to CDC to do overseas work, but by that time Margie and I were married and we had a young child. All of my CDC jobs were in the U.S.

I did go around the country evaluating outbreaks of disease where it wasn’t known what was going on. After CDC, I got a fellowship at Yale in rheumatology, and later, a staff position at their medical school.

Four months after getting to New Haven, I heard about a group of people in Lyme, Connecticut, who had arthritis. Back in medical school, I had been interested in rheumatology, the study of rheumatic diseases like arthritis. I had worked particularly on autoimmune diseases in which arthritis is a manifestation. There were so many cases that the experts felt something unusual must be happening there.

Lyme is 25 miles from Yale. Here I was sitting practically on top of an arthritis outbreak. I went to Lyme and saw several of these children. I saw several whose condition was compatible with juvenile rheumatoid arthritis. But as we worked on it, the striking finding was the clustering within specific small areas. Clustering has provided clues to the identification of many infectious diseases over the years.

There were areas where as many as 1 in 10 children were afflicted. One would expect an incidence of one affected child in a town the size of Lyme. We found 39.

And parents were complaining of similar symptoms.

So I proposed to drop what I had been doing and focus on these clusters of victims in Lyme. This was in the fall of 1975. I have been working on this disease ever since.

Our investigation in Lyme took on aspects of medical detective work. In Europe, earlier research had linked similar lesions to tick bites, so we were able to establish the transmission method.

By 1983, we proved that Lyme disease had a bacterial cause. After the eradication of malaria in the late 1950s, vector-borne disease was thought to no longer exist in the U.S. Now, Lyme is recognized as the most common vector-borne disease in America.

Once the cause of a disease is known, diagnostic tests can be developed, and we developed them for Lyme. Antibiotic treatment studies were also underway, and, by the early 1990s, we were moving toward a vaccine. A Lyme vaccine was actually on the market commercially from 1998 to 2002, but it was withdrawn because of the risk of lawsuits and the manufacturer deciding the market wasn’t big enough to justify the risk. I was intimately involved in all of this.

In 2002, after a period of time at Tufts Medical School, I moved to Harvard Medical School and Massachusetts General Hospital. My research on Lyme continued.

The possibilities of medical research seem almost limitless, so part of my efforts now are directed toward building and nurturing a cadre of young medical scientists and researchers who will carry on after my career concludes. We even have a couple of very advanced high school students with us at Massachusetts General this summer.

As with my medical research, I am constantly reminded here at Chautauqua of the importance of developing the future. As I visit some of the performing arts schools and witness the fantastic tutoring and mentoring of the next generation, it is clear that the Institution shares the passion to inspire those who will follow us.

My wife and I take an active interest in summer students here, in the performing arts and especially the voice program. We are part of the Connections program here on the grounds. And, sometimes, we get involved in unexpected ways.

Earlier this summer, for instance, one of our Connections students asked about my work. I briefly explained, and she said she knew someone here who had been diagnosed with Lyme disease. The person was in the Voice Program.

It was understandably overwhelming for this student. She gets here, feels badly, is diagnosed with Lyme, starts treatment and finds that someone with my background is on the grounds. There was so much that was initially unbelievable for her.

My Chautauqua adventure began 45 years ago. I married into Chautauqua. Margie’s family had been coming here for many years.

Margie: I was able to trace some family presence back to 1909 by researching old copies of The Chautauquan Daily at the Chautauqua Archives. They used to run articles that announced which family was coming to Chautauqua, when and for how long. Our house here has been in my family since 1925.

Allen: I think it is worth noting that Margie is the third Margaret — and fourth successive woman — in her family who has owned this particular house.

Margie: We are both from Fort Wayne, Indiana. We knew each other as kids. We met in the seventh grade. Both of our fathers were physicians in Fort Wayne, moving there from Pittsburgh and Texas, respectively. There were many financial opportunities in Fort Wayne at that time. Allen played the violin at the Presbyterian church that I attended.

We would visit Chautauqua after we married, but usually only around the Fourth of July since that was close to my grandmother’s birthday. My father used to ring the bells down at Miller Bell Tower before they electrified the system there. He said he had done just about every job on the grounds at one time or another.

When we began visiting, my aunts were in control of the environment. It was very traditional. We were short-term visitors, and there was a heavy formality. My aunts were over 70 by then, born before 1900.

When we had children, we got disinvited from the house. My aunts had difficulties with the unpredictability of small children. Our son used to scream whenever my aunt would try to take him for a walk. Spilled milk was not easily tolerated.

So we rented a house from my sister and stayed the last week of the season. Then we took a break from Chautauqua for several years, and moved around with Allen’s jobs. But in 1984 we stayed for a month and the children were old enough to go to Boys’ and Girls’ Club and things looked up for us at Chautauqua.

Allen: We have four children and, for them, this seems as much or more like home as anywhere. That had an effect on me. And my parents began to enjoy coming here. I started to have strong feelings for this place.

We inherited this house in 2000 and added our changes and renovations as earlier generations had done. We added porches. It’s a different house now.

Our kids do try to get back here every year. Chautauqua is always for the next generation. We have six grandchildren now, maybe more — who knows?

I want to talk some more about music, which is so central to Chautauqua and to me. I went to college and medical school at Columbia University, but the truth is that I went to New York for music. I studied violin with the director of violin at Juilliard. He used to take his students with him to a summer music school in upstate New York. What we have here in Chautauqua reminds me of that. We had about 100 students. We would eat meals together and live together, as students do here.

At the summer music school, I was assigned to the same string quartet as Itzhak Perlman. I was 18, and he was 15. Music was hugely important in my life; I thought, at that time, that I might do it professionally. I continued to study at Juilliard throughout the four years of medical school. I faced a choice: medicine or music?

I chose medicine. My father pushed for the medical career. He lived through the Depression. I have no regrets about my choice, but music has remained important to me.

It is the major way I connect to Chautauqua. I always attend orchestra and other musical performances when I am here.

My choice of medicine also proved fortuitous, because at age 26 I developed focal dystonia. This means I have a movement in my hand that I cannot control. When I developed this, virtually nothing was known about it. Now, we know it affects about 1 in every 200 musicians. It is generally career ending.

Music has remained vital to me despite this condition. I moved from violin to piano, and I can generally compensate well enough to play the piano.

I’d have to say things worked out for the best.