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Lyme Epicenter

For decades, Massachusetts has held the unfortunate distinction of having some of the highest rates of Lyme Disease in the country. And Cape Cod and the Islands is at the epicenter of the problem. In the fourth installment of our series, WCAI's Sean Corcoran reports on the debate surrounding treatment and diagnosis of Lyme disease.

Part 4 of 5

Janice Walk kept the tick that bit her a few weeks ago. She takes it out of the crumpled envelope and puts it on her work bench.

"Can you see it? I'll put it against the light. Yup, there it is," she said. "Adult deer tick."

Walk doesn't know how long the tick was attached to her leg, but she said it took a lot of effort to get off. She then took it to the Emergency Room at Cape Cod Hospital.

"And they said, 'Sure enough, that's a tick bite.' And they gave me a dose of doxycycline and said, 'If this becomes rashy or symptomatic, come back and we'll give you more doxycycline.'"

A single, preventative dose of Doxycycline is the standard treatment for a patient who presents with a recent black-legged tick bite. Doctors say it's enough to kill the Lyme disease bacteria before it can establish itself in the body. In Walk's case, she said about two days later she developed a red rash about two inches in diameter. This time she went to her doctor's walk-in clinic, on guard for some trouble. She's been bitten before.

"I had found a tick on me a year before that," she said, "and knowing about ticks, I took it to the doctor as well. And it was a doctor at the same place and she said, 'I can't really give you any antibiotics.' And I just looked at her and I said, 'What would you do if this tick had been on you?' And she just wrote the prescription right then and there and handed it to me."

That didn't happen this time. At the walk-in clinic, she saw a nurse practitioner who looked at the wound.

"She looked at it and told me that it was not infected. And I said, 'It looks infected to me,' and she said, 'Well it doesn't to me.' And I said, 'Well I would feel a lot more comfortable if you would give me more Doxycycline so that I do not get lyme disease from this because I am not liking how it looks.' And she said, "No.' She was not going to give me doxycycline."

Dotted across Cape Cod, the Islands and the South Coast are dozens of people who say they suffer years later because Lyme disease went either misdiagnosed or mistreated. Walk's partner, Janis Sommers was one of them. Twenty years after a tick bite in Provincetown, she still has complications.

Walk wasn't going to let that happen to her. She went to the Black Market for Doxycycline.

"I'm not disclosing where, but I had gotten some Doxycycline," she said. "So I just took it on my own."

Misdiagnosis still happens, people say. Symptoms vary from person to person, and if enough time goes by before treatment with antibiotics, Lyme can become well-entrenched in the body and much more difficult to kill. In fact, that's where the Lyme debate gets really ugly. Just as there's controversy about how to initially treat tick bites, there's considerably more disagreement among patients and even doctors themselves about how best to treat long-term Lyme disease.

"Certainly in the filed of infectious disease its the most contentious debate, I don't know about other fields of medicine," said Dr. David Pombo, director of Infectious Disease Prevention at Cape Cod Healthcare. "The story is complicated because it is the type of bacterium that can persist in the body, and there are animal models showing that standard therapy that we use for humans doesn't always irradiate the bacterium. Whether that is true in humans is not clear."

Dr. Paul Auwaerter is the clinical director for the division of infectious diseases at the Johns Hopkins University School of Medicine in Maryland. He said he does believe that when left untreated, Lyme does not respond well to antibiotics and can levee patients with persistent symptoms, such as chronic muscle aches, fatigue, and what's called 'brain fog,' when patients don't feel as sharp mentally as they once did.

Sometimes these people are misdiagnosed, he said, but his primary disagreement comes with the treatment.

"Myself, I like to practice what I hope is the best recommendations for my patients," Auwaeter said, "and if I thought long-term antibiotics worked because of compelling evidence, then you can be sure I would adopt it. But I don't think that's the case."

Credit Sean Corcoran
27-year-old Bryony Scudder has been suffering from Lyme Disease for more than 10 years. She says it's preventing her from having children because her bones are so fragile.

27-year-old Bryony Scudder of Centerville is convinced she contracted Lyme 10 years ago and it didn't go away. She was treated with antibiotics at the time, and at first she felt fine.

"I didn't have any symptoms," she said. "I wasn't tired. Nothing. And they then became this neurological stuff where I was feeling dizzy and I was having trouble processing. Like I was working in Osterville, and I got lost in Osterville.  And this is a road that I took every day to and from work."

Scudder said she's pushed for intravenous antibiotics treatment -- with some success -- but doctors continue to tell her they don't know why she is sick.

"I went to the doctor's this past week for a check-up after my IV, and my doctor said, 'How are you feeling?' And I said, 'I'm still kind of feeling like crap. My hip's hurting me. This and that.' And he said, 'Oh, well, it's not Lyme.' And I said, 'Oh, okay, well then what is it? What is it? If it's not Lyme, what could it be?' And he said, 'It must be in your head.' And I said, 'Okay', and I held it together until I left the office and I burst into tears cause it's just constantly what we're hearing."

Scudder said said the disease has made its way into her hips, and her orthopedic doctor said she needs a hip transplant. She knows that among the network of people who suffer from Lyme in the region, there's a closely-guarded list of what are considered Lyme-friendly doctors -- physicians who believe in long-term Lyme and are wiling to treat it with long-term antibiotics. But for Scudder, they're not an option.

"I'm 27," she said, "and I'm trying to make it here on Cape Cod. The majority of those doctors that are Lyme friendly and are Lyme literate don't take health insurance. And sometimes their visits alone are 400 dollars a visit. And I can't afford that."

Mashpee resident Kim Costa is a registered nurse who at first thought she was bitten by a spider last year. But she soon came down with debilitating migraine headaches, and an ER physician recommended she get a Lyme test, so she went to her primary care doctor.

"He looked at my thing and he said 'Ah, it's healing. You don't need any antibiotics'. And he said 'That's not lyme. You don't need to have a lyme titer.' So I left there and he told me to take extra-strength Excedrin. I left with no antibiotics and I left with no order to get a lyme test."

It was a homeopathic doctor who later ordered Costa a Lyme test.

"And she sent the test out and by the beginning of September I was positive. So I had gone from June to September with Lyme and it was actually my homeopath, the nurse practitioner, who actually give me the first prescription for Doxycycline."

Costa doesn't know how you prevent misdiagnosis and lack of treatment. Better, more accurate testing would help. But one thing she does advocate is bringing in ecologists -- people aware of how ticks live and how they get on us -- in order to take the fight directly to the tick.

"I think there would be a way to sort of try to help to curb the amount of ticks that we've got," she said. "Manipulate the environment for a few years and help bring down the level of ticks but I don't see that happening."

Researchers are thinking about ways to manipulate the environment. In fact the EPA is working through several years of data gathered on the Cape and Islands at what are called 4-poster deer feeding stations, where the animals are dosed with insecticide when they come to eat corn. Because as the medical and Lyme communities remain at odds over diagnosis and treatment, one solution to the Lyme problem may be found in the woods and marsh grasses surrounding us.