Tick, Tick, Tick...

In local Lyme annals, Jill Kuschel’s story is probably neither typical nor unique. In the fall of 1997, she was bitten by a tick at the cabin near Cross Lake she shared with her husband and three daughters. The embedded tick was removed in urgent care, and a doctor prescribed ten days of doxycycline. At the time, Kuschel—a petite, trim, energetic woman—was a nurse in the burn unit of Regions Hospital in St. Paul. She was thirty-nine years old and an avid runner, and she believed the antibiotics had “taken care” of whatever threat to her otherwise healthy system the tick bite might have presented.

Then, about six months later, she says, “I felt as though I had the worst flu of my life. It hit me and never went away. I was bedridden. I started getting other symptoms—pain in my muscles and joints, a numbness and tingling, then pretty soon I couldn’t lift my arms above my shoulders.” After about a month, she was forced to take a leave of absence from her job. She was tested for MS, ALS, and lupus, among other conditions, but the tests came back negative. Her family doctor finally diagnosed fibromyalgia—another shadowy disease with many nonspecific symptoms—and told her there was nothing he could prescribe besides a sleeping aid and suggested massage therapy and a chiropractor for relief from some of her symptoms.

“I lived with that until 2006,” she says. “By that time, I was able to go back to work, though I had to take a slower-paced job and could work only very part-time. I couldn’t run anymore, and some days my joints and muscles were so sore I could hardly walk. The massages and chiropractic care helped, but, overall, things were pretty bad.” She and her husband sold their cabin and started talking about nursing-home insurance—though she was still on the sunny side of fifty, the prospect of long-term care didn’t seem remote anymore.

Then, while working at a clinic in Wyoming, closer to her home forty-five minutes north of St. Paul, Kuschel happened to connect with an old high school classmate. Elizabeth Maloney had become a family doctor, married another physician, and practiced at an Allina clinic in nearby Forest Lake. Maloney had become interested in and knowledgeable about Lyme. She urged Kuschel to get tested again and to attend a support group in Forest Lake. “I went to their next meeting and met about twenty-five people who had many of the same symptoms I had,” Kuschel recalls. “It was incredible, like a mirror image—so much of what I was going through many of the others were going through too.” Kuschel was directed to a “sympathetic” doctor in St. Paul, waited three months for an appointment, and was finally evaluated and retested positive for Lyme. She came to believe, in retrospect, that her initial Lyme infection had been undertreated and was never destroyed.

“Since then, I’ve been on antibiotics—first oral, then intravenous, now oral again—and I’m back to about 80 percent of where I was before I got sick,” she says. “Which my doctor says will probably be as good as it gets.” She says she still suffers from headaches, occasional fatigue, “word-finding problems,” seizures, and joint pain. And she and her husband have also had to deal with the overlapping conditions of all three of their daughters, who have each been diagnosed with Lyme and have battled severe headaches, fatigue, and lack of concentration, among other symptoms, which have made school and work difficult and sometimes impossible. All three have been treated with antibiotics, she says, and two of the three are now feeling good enough to resume college and get on with a career, though the third “still struggles” with her condition. Last summer, for the first time, Joe Kuschel, a sales rep for a local food distributor, displayed the bull’s-eye rash, probably having been bitten by a tick that rode into the house on the family’s golden retriever. “We got Joe to the doctor, and he was treated with antibiotics for two months,” Jill says. “Thankfully, other than the rash, there were no symptoms and he’s fine.”

Jill is currently working as many as four days a week and, despite the almost Old Testament level of her family’s travails, tries hard to maintain an upbeat and positive attitude. “We decided not to let it take over our lives,” she says, knowing, from the experience of other “Lymies” she’s met and heard from, that, like any debilitating condition, Lyme disease can ruin careers, destroy families, and foreclose a promising future. “I can’t tell you how many people have lost their homes and been financially strapped,” she says, noting that even with her husband’s “excellent” insurance coverage, the Kuschels paid about $12,000 out of pocket last year for medications, consultations, and related expenses.

Of her own cluster of Lyme symptoms, she says, “It kind of waxes and wanes,” adding with a laugh, “I’ll never run again, but I can walk.” She also says she spends an hour or two a day as president of the Minnesota Lyme Action Support Group, her current avocation.

Kuschel, Maloney, and uncounted other patients in Minnesota and across the nation would describe her condition as a chronic, or persistent, form of Lyme disease. If you have “chronic Lyme,” its believers say, the infection or pathogen lives on in your body, mutating but not dying, thus prolonging or adding to your misery long after conventionally prescribed dosages of antibiotics run their course.

Most physicians, epidemiologists, and institutional experts, here and elsewhere, however, strongly disagree.

In October, a panel of Lyme specialists from around the country published “A Critical Appraisal of ‘Chronic Lyme Disease’ ” in The New England Journal of Medicine, calling the term a “misnomer.” It describes, they said, “the latest in a series of syndromes . . . postulated in an attempt to attribute medically unexplained symptoms to particular infections.” Beyond the diagnostic rhetoric, the rub is the treatment that’s prescribed—or isn’t. So-called “Lyme doctors” (“Lyme–literate” physicians to their champions) are often willing to prescribe a course of antibiotics that extends beyond—sometimes far beyond—the thirty-day limit established by the Infectious Diseases Society of America in 2006. The journal authors argued that “the use of prolonged, dangerous, and expensive antibiotic treatments for [‘chronic Lyme’] is not warranted.” Earlier in the year, one of the article’s authors was even blunter when talking to Newsweek, saying, “The majority of patients treated for ‘chronic Lyme’ do not have post–Lyme and in fact never, ever had Lyme disease at all.”

Melissa Kemperman, an epidemiologist at the Minnesota Department of Health, says the MDH follows conventional antichronic thinking (and, for that matter, the positions of the Centers for Disease Control, National Institutes of Health, Mayo Clinic, and other mainstream institutions)—to wit, that “reputable studies” show that there’s no such thing as “chronic Lyme” and extended antibiotic use can be harmful. “In the medical community and the public health field,” Kemperman goes on to say, “it’s not really much of a controversy. The bulk of the medical evidence shows that three or four weeks of antibiotics will clear up the infection and that a lot of people who think they have chronic Lyme are actually suffering from something else and long-term antibiotic therapy is not the solution to their problem.”