Tick-borne illness expert Dr. Timothy Lepore demystifies Lyme disease.
When it comes to island treasures, there is the Great Point Lighthouse, the Old Mill, the Nantucket Whaling Museum—and Dr. Timothy Lepore. An enduring icon on Nantucket, Lepore was the subject of a critically acclaimed book titled Island Practice and has earned a following on the island like no other doctor. Beyond Nantucket, Lepore has developed a national reputation for his expertise in Lyme disease and other tick-borne illnesses. Patients suffering from these diseases venture from all over the world to see him. N Magazine sat down with Lepore to help demystify the confusion around Lyme disease, how it is treated, how serious an illness it is and ways in which it could be managed or eradicated on Nantucket.
LEPORE: Lyme disease is an infection with a spirochete [a type of bacterium] of which the vector is the tick and the reservoir [or carrier] is probably the white-footed mouse, deer mouse and vole. That’s what Lyme disease is. Now, Lyme disease has a series of several different stages.
N MAGAZINE: What are those stages?
LEPORE: If a person finds a tick on themselves and it has been present for less than twenty-four to thirty-six hours, the risk of transmission of Lyme disease is pretty small. If you miss the tick and it falls off, and then you notice a rash, a bull’s-eye, or what we call cellulitis behind the knee that is expanding in nature (greater than five centimeters), then you most likely have Lyme disease. You might also have multiple areas of rash because the spirochete gets into the blood and may show up in other areas. But typically, the place you get the rash is where the bite was. After a period of time, the rash goes away. If you’re treated with either amoxicillin, doxycycline, Ceftin or Rocephin, that’s the end of the story.
N MAGAZINE: What if it goes untreated?
LEPORE: If it goes untreated, you may present with second stage Lyme disease, which is classically a facial palsy and a heart block where your heart may go from, say, seventy or eighty down to thirty beats per minute. This is also treatable with antibiotics.
LEPORE: Third stage Lyme disease can most often be referred to as “Lyme arthritis.” I classically see these patients in November or December because they have been bitten in the spring or in the early fall and it was missed, and now they come in with a big, red swollen knee. Lyme arthritis is typically in one joint. They’re big joints: hips, knees, ankles. Then there’s also Lyme meningitis, which is uncommon. And another late stage is Lyme radiculitis. Again, these are treatable in all stages.
N MAGAZINE: If Lyme disease is so treatable, why the panic? When people get Lyme disease, they jump to a conclusion that this is a lifelong affliction.
LEPORE: Lyme disease treated early— cured. Lyme disease treated later— cured, but there’s a subset of patients that will have persistent symptoms. Lyme disease scares people in part because it has several stages. People hear these stories that it’s not curable. And because of the way we test for it—an antibody test— it takes four to six weeks to turn positive. Even after you’re treated, the test may show positive for months to years.
N MAGAZINE: Is it possible that for patients who complain of having long-term symptoms that the Lyme disease may have triggered some kind of autoimmune disorder?
LEPORE: Why do some people have persistent symptoms? One idea is that if you look at the bell curve of people, a lot of these complaints fall inside the bell curve, but some of these people complaining of long-term symptoms fall outside the bell curve of the population. They may have an immune dysregulation relating to the spirochete. This is something that Allen Steere is working on up at Mass General. There’s a real possibility of that.
N MAGAZINE: Does Nantucket have the highest concentration of people who have had Lyme disease?
LEPORE: It depends on whether you’re talking about numbers or percentages. If you talk percentages, Nantucket is up there.
N MAGAZINE: Why is it so high?
LEPORE: Because people don’t do the simple things. The simple things are tick checks. It’s cheap; it’s easy. All you need is a good friend, a significant other, a partner, a wife or a husband to look at those places where you can get a tick that you can’t see. One of my nurse practitioners thought her son had a little bit of chocolate on his lip and it turned out to be an imbedded tick.
N MAGAZINE: What else can you do?
LEPORE: Tuck your pants into your socks. Wear light-colored clothes. Take your clothes and throw them in the dryer for ten or fifteen minutes, which kills the ticks. Cut down your risk areas by avoiding what I call “the edge.” I use the golf course analogy: If you’re in the fairway, you’re all set. But if you get into that edge property, that’s where the ticks live.
N MAGAZINE: Why was the Lyme vaccine not successful?
LEPORE: The Lyme vaccine was successful. I was part of the trials. I used the Lyme vaccine on a number of patients and it was very effective. The problem is that we’re surrounded by lawyers. With any vaccine, it gets expensive, because anybody that gets a hangnail blames the vaccine. I immunized probably four hundred people total. The worst thing I saw in the trial itself was with my administrative secretary, who I signed up for an injection and she had a reaction.
N MAGAZINE: Do you wish that particular vaccine was still on the market?
LEPORE: Oh, yes, because it was safe and effective.
N MAGAZINE: Are you close enough to the pharmaceutical world to know if there’s something else in the works?
LEPORE: Yes, there are attempts out there to recreate that vaccine.
N MAGAZINE: Does Lyme disease pose any different risk components to children?
LEPORE: No. We treat Lyme disease in children the same. Children handle Babesia very well because they’ re immunologically very in-tune, whereas when you get into the geezer ages, you’ re not quite as immunologically competent.
N MAGAZINE: Tick-borne illnesses are not limited to Lyme. How serious are the other range of tick-borne diseases that we see here?
LEPORE: They are all much more serious than Lyme disease. The original tick-borne disease described on Nantucket around 1970 was Babesiosis. Babesiosis is very much a malarial-type illness. It breaks down red blood cells and you look like Humphrey Bogart in The African Queen with bed-shaking chills. People don’t come to me and say, “I think I have babesiosis.” They come to me and say, “I’m awfully sick.” Babesiosis is a potentially dangerous disease. I’ve had two adults that had to be on ventilators for a month and six weeks. Another young man had to have five units of blood transfused because babesiosis breaks down your red blood cells. The treatment was pioneered out of this hospital with Dr. Peter Krause from Yale and myself using azithromycin (Zithromax), which is the standard of care right now. You get treated for a week and you get better. You get cured.
N MAGAZINE: How prevalent is babesiosis on Nantucket?
LEPORE: It’s less common than Lyme disease, but it’s in about second place. I’ve had about twelve cases this year. Some years we’ve seen as many as fifty, but that just depends on whether I can go around the emergency room and hunt them out.
LEPORE: There’s Anaplasma, which was described by Sam Telford and myself in 1995. Same tick, same vector, same reservoir and the treatment is with doxycycline. People get better very quickly. Better than with the more significant Lyme disease or babesiosis.
N MAGAZINE: If you had unlimited resources, how would you fight the tick-borne illnesses on Nantucket?
LEPORE: The perhaps simplest but most controversial way is to wipe out the deer. Our deer herds number fifty per square mile. If you get them down to fifteen per square mile, these diseases go away. This has been done at Great Island, a privately-owned island that had a very high rate of tick-borne illnesses every year. They killed all the deer, and after two years, the numbers went down dramatically. That was also done around Crane Beach in Ipswich, where they had a hundred deer per square mile. When they culled the herd way down, the instances of diseases went away. That’s one way to control it, but there’s no political will do it.