Tick, Tick, Tick...

Stephan says that when he first arrived in Duluth from San Antonio, Texas—a relatively Lyme–lite zone—he had little experience with the disease and hewed closely to the profession’s guidelines, meaning a fairly narrow range of symptoms and a relatively short course of antibiotic treatment. Taking a conservative approach, he says, he turned patients away who didn’t report a positive blood test. Then a few cases began changing his mind. With increasing experience, he says, “I became more confident that perhaps some of the conventional wisdom wasn’t completely correct.”

Now, having seen several hundred Lyme cases in Minnesota, he’s willing to look at a greater range of possibilities in both diagnosis and treatment. “I’m seeing some clinical presentations that are probably a bit outside what the average physician would recognize as standard Lyme,” he says. “For instance, I think there are more neurologic symptoms that could be due to Lyme disease—some of this has to be worked out with good studies, but what I’m seeing anecdotally are patients who might have been initially diagnosed as having a tremor disorder such as Parkinson’s or a progressive disorder like MS who have strongly positive Lyme tests, and a number of them—not all of them—improve when treated for Lyme. Then there’s a whole group of patients whose predominant symptom is devastating fatigue or cognitive problems. They don’t have full-blown dementia, but they have difficulty concentrating and focusing and some of them can’t perform at work and need to sleep all the time. The traditional way to approach that is to do a bunch of tests and if you don’t find an answer say it’s chronic fatigue syndrome or fibromyalgia. But I’m finding a fair number of these patients who’ve spent a lot of time in the woods and have had tick bites and also have positive blood tests. Well, if you’ve been exposed to Lyme and you get better with Lyme treatment, I have trouble calling that fibromyalgia or chronic fatigue.

“There are so many symptoms that could apply to so many conditions—that’s the confusing part, you bet. On the other hand, if someone says he’s fatigued and hurts all over and while he used to run triathlons now he can’t climb a flight of stairs—it’s tempting to say it’s just in his head, he’s depressed, or whatever. But if he has a positive Lyme test and he responds to antibiotics, I’m tempted to call it Lyme.”

Stephan says some of his fellow infectious disease specialists have been skeptical, but makes it clear he’s board certified in both infectious disease and internal medicine and heads the infectious disease unit of a prominent clinic—in other words, he’s not a “fringe guy” or a “quack.” “I share the concern with my colleagues that the overuse of antibiotics is a bad thing,” he says, and he’s concerned that some of the more extravagant claims about Lyme transmission may damage legitimate inquiry and discussion. “I’m just trying to strike a balance between what the evidence will support and providing good medical care and keeping an open mind,” he says. “Once I had Lyme disease myself it solidified my resolve to roll up my sleeves and try to help.”

There’s little doubt in Stephan’s mind that the Lyme threat is growing, and health authorities here and elsewhere agree. Experts say the range of deer ticks is expanding as deer and mice populations increase, and, as humans push their homes farther into the woods and find more ways to have fun outdoors, their exposure to the ticks increases. Even climate change may prove a factor: Deer ticks thrive in warm, humid conditions, so the warmer and more humid our boreal weather becomes, the friendlier the environment for ticks. In the meantime, increased awareness and diagnoses of the disease add to the rising case numbers.

A human vaccine was briefly available, but the market didn’t justify its cost, so if you’re outdoors in tick country, DEET is recommended and commonsense precautions are the watchwords. [See page 113.] Nobody, not even the Lyme patients you talk to, advocates staying inside. Stephan’s backyard abuts a 700-acre nature preserve, and he and his son are enthusiastic campers. Kemperman, whose job includes dragging canvas tick-catchers through the underbrush during Lyme season, says the key is balancing caution with a “healthy enjoyment of the outdoors.” According to Betty Maloney, “None of us is saying, ‘Don’t go in the woods.’ ”

“We still live in the woods—and I wouldn’t trade that for anything,” says Jill Kuschel, who speaks from hard experience about the tradeoffs. “Ticks are a fact of life, and we take precautions, especially in the spring and summer. Before I got sick, I didn’t think twice before walking in the woods. I’ve since become very careful.”

Senior editor William Swanson has written about depression, Alzheimer’s disease, heart attacks, and other medical subjects in Mpls.St.Paul Magazine.