Dancing was Jean Marie Hart’s first love. “Dance was everything for me in my life," says the 62-year-old from Hull. "That’s how I identified myself.”

But now, “I see myself as a stick figure," she says. "Very two-dimensional. Because I have a lot of pain.”

First bitten by a tick as a newlywed on Nantucket in the late 1980s, Hart has been struggling ever since with bouts of joint pain, and cognitive difficulties like brain fog and word searching. She sought help from countless doctors over 17 years until, in 2005, she was diagnosed with Lyme disease by a positive blood test.

The diagnosis did not solve her problems. Despite trying a number of homeopathic therapies and extended antibiotic treatments, Hart still suffered repeated relapses of her symptoms.

So last year, she turned to the Dean Center for Tick Borne Illness. Based at the Spaulding Rehabilitation Hospital in Boston, the Dean Center sees patients who complain of long-term symptoms linked to Lyme disease as needing rehabilitation, much as patients with concussions do.

Instead of focusing on the most contentious Lyme disease questions -- diagnostic labels, long-term antibiotics -- physicians at the Dean Center sidestep the controversy and focus on treating patients’ symptoms.

“Because when people present with impairment, we certainly feel like we should be doing something about it,” says Dr. David Crandell, the clinic’s co-director, who favors the term “tick-borne impairment” to describe what afflicts its patients.

A Yearlong Waiting List

So when Hart came to the clinic, Crandell listened to her for 90 minutes, sorting through reams of old medical files and blood tests, and referring her to various specialists. Among her treatments: speech and language therapy, aqua therapy, a coping skills group, and one-on-one psychological counseling. Most are covered by her insurance; the counseling is free.

Hart had to wait five months to see Dr. Crandell, but she says it was worth it.

“He really understood what patients with Lyme disease go through and how we suffer,” she says. “That was such a breakthrough for me, because it’s so hard to find a doctor that understands this disease.”

Hart is among the 650 patients who have been treated by Crandell and clinic co-director Dr. Nevena Zubcevik in the two years since the Dean Center opened. Patient demand for care there remains overwhelming, to the point that in recent months, the waitlist reached a year long.

Currently, the clinic has stopped putting patients on the waitlist; it hopes to expand clinical services for more appointments next year.

As it expands, the clinic will face the high demand for care and also a challenge unique to Lyme disease: Can it maintain a neutral position in possibly the most contentious field in medicine?

The Lyme Wars

The Lyme Wars is the common term for the rancorous debate over Lyme disease.

On one hand, I’ve heard frustrated physicians express their disbelief in “chronic Lyme,” and concern that patients are being taken advantage of by doctors seeking to make money by over-diagnosing Lyme and offering expensive treatments like long-term antibiotics.

On the other, I’ve heard from suffering patients who felt their symptoms were dismissed by many previous doctors as “all in your head,” yet they desperately seek a diagnosis and treatment to help them get back to normal.

In my training and now in practice, I’ve seen controversies in medicine, but nothing else quite like this. The Lyme Wars have led to distrust, dividing lines and code words like LLMD — “Lyme-literate MD,” often shorthand for physicians willing to deviate from guidelines on the prescription of long-term antibiotics — if you’re on one side, and IDSA — Infectious Disease Society of America -- guidelines if you’re on the other.

The heat of the conflict has alienated patients from the medical system, and physicians from patients suffering with symptoms like fatigue or brain fog that don’t lend themselves to a clear, easy diagnosis.

Adding to the controversy, there are no official numbers on how many people are affected; the distrust runs so deep that no official study has been done. While an estimated 40,000 to 50,000 people get Lyme yearly in Massachusetts and over 300,000 nationwide, we only have estimates that suggest anywhere from a “small percentage” to 40 percent can end up with chronic symptoms.

Amid all this controversy, every Lyme clinic faces one particularly thorny question: whether doctors should prescribe long-term antibiotics.

The IDSA, the leading national group of infectious disease specialists, issued guidelines in 2006 saying antibiotic treatment should stop at four weeks, max. The smaller International Lyme and Associated Diseases Society developed different guidelines suggesting longer treatment with antibiotics is sometimes necessary.

But the long-term antibiotics question has been looked at in high-quality, randomized studies with placebo controls, says Dr. Paul Auwaerter, a Johns Hopkins professor and president-elect of the Infectious Disease Society of America.

“And in these prospective studies, it's been determined that there really isn't a significant or durable benefit to additional antibiotics,” he says.

As a result, the American Academy of Pediatrics, American College of Neurology, American College of Rheumatology and the Infectious Disease Society of America all recommend against long-term treatment with oral or intravenous antibiotics for post-treatment Lyme disease syndrome. So do equivalent physician societies from Switzerland, the United Kingdom, France, Canada and the European CDC.

Against that backdrop, the Dean Center does not currently prescribe antibiotics — except, Dr. Crandell says, in rare, clear-cut cases of acute Lyme disease.

Crandell says that policy is the clinic’s attempt to steer clear of the swirling antibiotics debate. “We tried to position ourselves not on either side, but on the side of the patient and caring," he says.