Air Date: Week of September 15, 2000

Lyme disease is the most common tick-borne illness in the U.S., and most people who come down with it are successfully treated with a round of antibiotics. But a small percentage of patients say ongoing infection has left them with pain, fatigue and anger at the doctors and insurance companies who say there’s no such thing as chronic lyme disease. Living On Earth’s Diane Toomey reports.

Transcript

CURWOOD: This is Living on Earth. I'm Steve Curwood.

(A crowd in the street)

CROWD: (Shouting) We want a cure! We want it now! We want a cure! We want it now!

CURWOOD: We want a cure and we want it now. That's the chant for patient activists who call themselves Lymies . They wear lime green ribbons, carry signs that read, "I'm ticked off," and they're part of a vocal and angry movement of folks who say they're afflicted by chronic Lyme Disease. Ticks transmit the increasingly common Lyme disease, which is hosted by deer and mice here in the U.S. A round of antibiotics is the standard medical protocol to treat the disorder, and it's supposed to knock out the infection for good. But as Living on Earth's Diane Toomey reports, a small percentage of patients say that even after treatment, a chronic condition sets in with debilitating symptoms.

(A chicken clucks)

TOOMEY: Rita Weeks swears by her chickens. Standing in her flower-laden back yard, the Westchester County, New York, resident says these birds, in the process of hunting and pecking, end up eating the ticks that spread Lyme Disease.

WEEKS: I work in my garden all the time and I never get any ticks on me.

TOOMEY: The prospect of creating a tick-free zone appeals to Rita's neighbor Lisa.

LISA: Personally, I think that every house in this county ought to have chickens. They work. They're cheap. They're cute. (Laughs)

TOOMEY: Lisa and Rita are in the process of rearranging fences so that the chickens can free-range on Lisa's property. Both women have had Lyme disease, but it's Lisa's family that's been hardest hit. All five members have come down with the infection, including her teenage daughter.

LISA: My daughter has fairly severe emotional difficulties that I think are, at least partially, linked to Lyme.

TOOMEY: Lisa's suspicion is controversial. That's because her daughter received what most doctors would consider an adequate dose of antibiotics. If Lyme Disease is left untreated, it can lead to neurological damage months or even years down the road. But Lisa says six months after her daughter completed her course of medication, she began to have emotional problems.

LISA: She started throwing very violent temper tantrums. She attacked me. She attacked a kid in school. It was not a pretty picture, and it was typical 13-year-old angst.

TOOMEY: When Lisa mentions the possibility that her daughter may have ongoing Lyme infection, she says doctors look at her like she's crazy. At this point, a blood test for the illness wouldn't prove anything because once a person's been infected with Lyme they'll always test positive. Lisa would like to see how her daughter would respond to stronger antibiotics, but this is how her HMO responds to that.

WOMAN: She's been treated already. She had her pills. She's done. I don't really have any idea how to break through that.

TOOMEY: But most physicians think there's good reason to discount the possibility of chronic Lyme Disease.

SHAPIRO: What some people would have you believe is that there are two different diseases.

TOOMEY: Yale physician Eugene Shapiro says first, take the obvious case of Lyme Disease that usually starts with a distinctive rash and can lead to arthritis and facial paralysis.

SHAPIRO: Somehow, for that form of the disease, antibiotics are effective. They do fine. But then there's some other form of the disease which is, you can't put your hand around it. They don't have objective findings of inflammation, which is the way bacteria cause disease.

TOOMEY: What these patients do have are symptoms that doctors call nonspecific. They span a broad spectrum. Emotional problems, as in the case of Lisa's daughter; or fatigue, muscle pains, depression. Doctor Shapiro helped write the Lyme treatment guidelines put out by the Infectious Diseases Society of America. Guidelines that state even the most advanced cases of infection can be eradicated with two months of oral or intravenous antibiotics. But for the patients with these ongoing, nonspecific symptoms, the maximum treatment didn't seem to work.

SHAPIRO: They would have you believe that form of the disease, somehow this is, the bacteria knows to act differently and it doesn't respond to antibiotics in this sense. It really doesn't make any sense.

TOOMEY: But don't tell that to Brian.

BRIAN: Both of my forearms and my hands are tingling and they're numb. I have firing pains in my fingers that feel like little firecrackers going off in my fingers. My eyeballs are still hurting, they're throbbing. I have been feeling some word loss. I've been trying to speak and just stuttering and not being able to continue in a conversation.

TOOMEY: And this is a good day. That's because Brian -- not his real name -- feels well enough to walk around New York's Central Park, where the 27-year-old demonstrates his knack for finding edible plants.

BRIAN: Here we have pokeweed, which is a very popular plant that's eaten along the south in its shoot stage. It's poisonous now….

TOOMEY: Brian says his bout with Lyme disease began four years ago, shortly after he'd gotten numerous tick bites on a camping trip in New Jersey.

BRIAN: After about two weeks, pains were happening in my fingers and my joints and my hands, and especially in my wrists.

TOOMEY: Brian didn't have the classic bull's-eye rash or flu-like symptoms that can indicate Lyme infection, and his blood test came back negative. Doctors ruled out other conditions, but after two years without a diagnosis, Brian says he was completely disabled.

BRIAN: I could barely make it up and down the stairs to my apartment. And, at that point, I had a terribly stiff neck. And terrible headaches, and nerve pains running, now, through my arms and up and down my spine.

TOOMEY: Again he was tested for Lyme Disease, and again the result was negative. But Lyme Disease activists and some doctors say the test isn't reliable. They contend there are a lot of false negatives, something that most Lyme researchers dispute. However, by this time Brian had finally found a doctor who was Lyme literate, as activists put it. So, based on the fact that Brian got his tick bites in an area known to have lots of infected ticks, his doctor put him on antibiotics. Brian says he got better.

BRIAN: After about four weeks on the antibiotics, I was to a point where I could begin to go out and about and actually consider possibly working again.

TOOMEY: Brian's doctor told him he'd need to be on antibiotics a long time because he went so long without treatment. But when he tried to go off the drugs after six months --

BRIAN: I was miserably ill with nerve pains all over my body, cognitive difficulties. I was slurring my speech. And I went back to the doctor, and he said you know, I think you need to go back on antibiotics.

TOOMEY: Experiences like Brian's are what Dr. Joseph Burrascano points to as proof of ongoing Lyme infection. The Long Island internist has a reputation as the doctor of last resort for people who, as the saying goes, have gone chronic.

BURRASCANO: To date, I have patients from 11 countries and 41 different states. You know, I have a very strange office. We keep ferry schedules and train schedules and taxis and hotel listings (laughs) -- not the average medical practice.

TOOMEY: Dr. Burrascano says many of his patients are chronically ill because they weren't diagnosed properly or their infection wasn't treated aggressively, giving the bacteria time to replicate and disperse. So it's important, Dr. Burrascano says, to treat even early stage Lyme disease with a long and strong dose of antibiotics.

BURRASCANO: The doctor might say "oh, it's a simple case of Lyme. You're not too sick; I'll give you a small dose of medication." What happens? Well, the more superficial germs may be eradicated, but the deeper ones remain deep. So you leave the patient with a deeper, more difficult to control infection.

TOOMEY: Hence, the months or even years of antibiotic treatment some patients require. But for other physicians, there's a big problem with this theory. Dr. Leonard Sigal is a rheumatologist at the University of Medicine and Dentistry of New Jersey. He explains if Lyme bacteria are being treated with ineffective dosages of antibiotics, then we should be seeing the emergence of antibiotic-resistant Lyme microbes. But in the case of Borrelia burgdorferi , as the Lyme bacterium is known...

SIGAL: Nobody has ever found a Borrelia Burgdorfer that is resistant to the standard antibiotics that are used in the treatment of Lyme Disease. Which I think really pokes a major league hole in the theory that what you've got is you need more antibiotics because you've made a super-bug.

TOOMEY: There is preliminary evidence that Lyme bacteria can trigger an auto-immune response that might lead to rheumatoid arthritis or fibromyalgia. But doctors say this isn't considered Lyme disease, because by that point the bacteria are long gone. So antibiotics would be useless. If patients do feel better on long-term antibiotics, Dr. Sigal says, that could be chalked up to the placebo effect. Except these antibiotics are not placebos.

SIGAL: Are these drugs benign? No. Are these drugs very toxic? Sometimes. This is not distilled water that we're talking about. This is potentially very toxic poisonous material.

(Crinkling)

GRANT: So I take my alcohol swab, remove the bandage that stays over the site. Clean off the tube, so that it's bacteria free...

TOOMEY: Every morning for the last three weeks, Cathy Grant has sat at her kitchen table and set up an intravenous line into her arm. She hooks a tube into a container that looks like a lemon juice ball.

GRANT: Open up the tube, and it starts going.

TOOMEY: A potent intravenous antibiotic is the treatment of choice for people like Cathy, who believe they have chronic Lyme Disease.

(Chimes)

TOOMEY: Speaking on her back porch, Cathy says she went undiagnosed for two years until a blood test confirmed she had Lyme disease. After months of antibiotics, she says she's still not cured.

GRANT: I've had memory problems. Just can't get words out of my head. I know they're there, but I can't get them out.

TOOMEY: So Cathy Grant is participating in a federally-funded study. The research is designed to gauge the effectiveness of long-term antibiotic treatment for people with cognitive problems that might be due to chronic Lyme. But because it's a controlled study, the medication that's dripping into her arm right now may actually be the IV equivalent of a sugar pill. But Cathy says she's willing to take that chance.

GRANT: I've known people that have all of a sudden, they got on intravenous or they, you know, all of a sudden something works for them. And that's why I'm in this research project, so that we can all try to find out why and why I'm chronic versus in somebody else that isn't chronic.

TOOMEY: The results of this study are four years away. In the meantime, the rhetoric surrounding Lyme disease has turned less than collegial. Activists accuse nay-saying doctors of being in the pocket of insurance companies who don't want to pay the one thousand dollars a week it can cost for IV antibiotics. Those doctors, in turn, accuse physicians in the opposing camp of feeding off the desperation of sick people. And the controversy has been notched up a level. A number of doctors who treat chronic Lyme patients, including Long Island internist Joseph Burrascano , are being investigated by their state's medical boards. In turn, a patient has brought charges against a doctor who discounts chronic Lyme Disease. For Living on Earth, I'm Diane Toomey.