Leslie Johnson struggles with migraines and memory issues. Her joints ache and she's suffered problems with her heart, bowels and eyes.
Ailments that had plagued her since college intensified in 2005 following the birth of her second child. Johnson's mother, who at the time had recently been diagnosed with Lyme disease, saw some parallels with her own condition.
"And so my mom said, 'You know what? I'm going to take you to my Lyme doctor.'"
That doctor tested Johnson's blood for antibodies to the bacterium that causes Lyme disease. It came back positive, as did tests on her kids and husband. The doctor prescribed antibiotics for the whole family.
Johnson began six months of intravenous antibiotics but started feeling worse again once it ended. She is on oral antibiotics now. "It's working," said Johnson, 39, of St. Louis Park. "It's a slow process." Her 9-year-old daughter is done with antibiotics. Her husband and 10-year-old son are not.
Minnesota is entering its peak period for Lyme disease diagnoses. As common as the tick-borne disease is, there's still a lot unknown about it. A debate has raged for many years over how to treat it, especially for people with suspected chronic Lyme disease.
Even the existence of that condition is disputed.
Dr. Johan S. Bakken, an infectious disease doctor at St. Luke's Hospital in Duluth, believes some physicians are treating an infection that doesn't exist. He helped write the latest guidance on treating Lyme disease.
The treatment debate, he said, is "to a large extent driven by emotions that are not supported by scientific evidence."
Johnson's most recent round of antibiotic treatment has continued for more than two-and-a-half years. That's unusual.
Lyme disease treatment guidelines, created by the Infectious Diseases Society of America, recommend a short course of antibiotics to treat Lyme disease infections. Typically, that means three weeks or less. If the disease has already been treated once with antibiotics, the guidelines do not recommend further antimicrobial treatment.
Antibody tests, like the one Johnson had, are just a tool to see if a patient has been exposed to the bacterium that causes Lyme disease, Bakken said. He says they should not be viewed as proof that a patient has a persistent infection, just as antibodies to a flu virus don't suggest that person has ongoing flu months or years after their illness.
"I don't think anyone believes that patients are making this up," he added. "But we have an absence in documenting that their symptom is driven by a persistently active infection."
Bakken estimates that at least 95 percent of the patients who are referred to him for Lyme disease do not have it. Instead, he says many are suffering from conditions such as lupus, multiple sclerosis and chronic fibromyalgia syndrome.
He says treating them inappropriately with long-term antibiotic therapy can be dangerous.
In Minnesota there have been two published cases in which patients died after receiving extended doses of antibiotics to treat suspected chronic Lyme disease. One patient contracted an antibiotic-resistant infection. The other died from an infected blood clot caused by the IV port in her skin.
No one disputes the risks of long-term antibiotic use, said Dr. Betty Maloney, medical advisor for the Minnesota Lyme Association, a group that supports more treatment options for patients with suspected chronic Lyme disease. Maloney teaches courses to health professionals on the science of Lyme disease.
But doctors prescribe extended antibiotic therapy for many other conditions, Maloney said, including tuberculosis and some bladder and bowel infections. For those patients, she added, the treatment is worth the risk, just as it is for people suffering from chronic Lyme disease.
"At some point," she said, "physicians are responsible for looking beyond guidelines, if the guidelines don't seem to be working."
As for the evidence of effectiveness, Maloney contends there is no proof that long-term antibiotics work for patients because there haven't been enough patient trials exploring treatment alternatives.
While the debate rages on over the best way to treat patients with chronic Lyme symptoms, Minnesota physicians are operating in a sort of Lyme limbo.
In 2010, the Minnesota Legislature took up a bill that would have protected doctors who prescribe long-term antibiotic therapy to treat chronic Lyme disease, even though the practice goes against professional treatment guidelines. As a compromise, the Minnesota Board of Medical Practice agreed to a five-year moratorium on sanctions against doctors who deviate from the treatment guidelines.
The moratorium will expire in 2015, but it appears that probably won't be enough time to settle the Lyme debate.