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New Lyme disease center at Spaulding treats lingering symptoms

Julie Ambrosino (left) worked with therapist Tara Cates at Spaulding Hospital.

David L Ryan/Globe Staff

Julie Ambrosino (left) worked with therapist Tara Cates at Spaulding Hospital.

Julie Ambrosino’s grinding fatigue has eased a bit, and her brain doesn’t feel quite as foggy. But when she went grocery shopping recently, she was overwhelmed by dizziness as she looked up at a shelf of soup cans.

What started six years ago as strange muscle and joint pains mushroomed into a constellation of debilitating, chronic symptoms. The once-active Dover mother and businesswoman has since traveled what she calls the “dark alley” of Lyme disease, hunting for doctors who might help.

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That odyssey led her to Spaulding Rehabilitation Hospital in Boston, where Ambrosino is among the earliest patients in a new center that focuses on residual effects of the disease, which can impair daily life long after the first symptoms arrive.

“To my knowledge, there is no other place in the country that is focused on rehabilitation of these patients,” said Dr. Brian Fallon, director of the Lyme and Tick-Borne Diseases Research Center at Columbia University Medical Center in New York.

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While the science behind chronic Lyme illness continues to splinter the medical community, Spaulding, known for its care of 2013 Boston Marathon bombing patients, quietly opened its doors in June to the new Dean Center for Tick Borne Illness. Already, 52 people have been treated, and the center’s leaders say the patients, and not the politics, will remain their focus.

The center draws on an array of specialists, including brain researchers, physical and occupational therapists, infectious disease experts, and mental health counselors, to treat patients whose illness persists long after the typical course of antibiotics.

“So many doctors don’t want to acknowledge the chronic form of this disease,” said Ambrosino, who estimates she visited 30 specialists and underwent 150 blood tests searching for answers before coming to Spaulding. “I live 24/7 in this varying state of unwellness.”

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Roughly 300,000 Americans are diagnosed with Lyme disease annually, which is spread by a bite from an infected deer tick, according to the US Centers for Disease Control and Prevention. It’s not known how many people suffer from lingering symptoms, called post-treatment Lyme disease syndrome. But some studies suggest that roughly 20 percent of patients initially treated with antibiotics may still battle chronic fatigue, muscle and joint pain, numbness or a sense of pins and needles, and balance impairment months or years later.

Yet Lyme specialists are sharply divided about the source of these lingering symptoms, not to mention how they might be treated.

There is no definitive test to diagnose post-treatment Lyme disease. Recent research from Northeastern University suggests the bacterium that causes Lyme may form dormant “persister cells” that evade antibiotics. Other researchers say antibiotics wipe out the infection, and the lingering symptoms are from an autoimmune reaction or nerve damage from the initial infection.

David L. Ryan/Globe Staff

Julie Ambrosino (left) lost her balance while keeping her eyes closed as Dr. Nevena Zubcevik led her through tests.

At Spaulding, the two specialists who direct the new center are pushing past the debate because, they say, they have encountered too many patients who simply need help.

“This is not a red-state-blue-state issue. This is a Lyme state,” said Dr. David Crandell, a rehabilitation specialist at Spaulding known for his work with patients who lost limbs in the Marathon bombings.

“I’ve come to realize Lyme patients are rehab patients,” Crandell said.

Post-treatment Lyme disease patients often have problems with memory and thinking, similar to patients who have suffered concussions or other brain injuries, said Dr. Nevena Zubcevik, a brain injury researcher and co-director of the new center. The patients may struggle with work, remembering appointments, or figuring out how to pay bills.

Occupational therapy can help teach these patients skills to piece their lives back together, the doctors said. Other types of therapy can be targeted for patients with balance, muscle, and joint problems.

“We are trying to respond in the face of an epidemic, and this is a population in dire need,” Zubcevik said.

Health insurance companies have covered most services at Spaulding for the first batch of post-treatment Lyme patients, the doctors said. But there is one service that will be offered free of charge — mental health counseling. That was the wish of Brandi and Chris Dean, whose donation allowed Spaulding to launch the center bearing their name.

Brandi Dean, a 38-year-old Wellesley mother, was diagnosed with Lyme in 2011. But Dean said she was treated horribly by many doctors who dismissed her vertigo, confusion, strange weakness, and heart palpitations as anxiety because she had just given birth to her second son.

Dean started a support group for other Lyme patients and soon realized her experience was hardly unique. She learned of two people with Lyme who committed suicide, one a mother of two children, the other a girl who had written Dean a long e-mail detailing her desperate search for help, then walked in front of a train a week later.

“I told [the Spaulding doctors] that when we opened the center, it was important for patients to have someone to talk to because they are not always being supported by their families and friends,” Dean said.

“My experience was so traumatic, having been told by so many doctors there was nothing wrong with me, I needed to talk to someone about what I was going through,” Dean said.

The Dean Center will also support research, including a pilot study enrolling 20 people to test whether use of a mild electrical current in the brain might improve the thinking problems, fatigue, and pain experienced by so many post-treatment Lyme patients. Spaulding already uses this treatment for some patients recovering from strokes and brain injuries.

Spaulding’s focus on rehabilitation is sorely needed, said Fallon of Columbia University. Johns Hopkins Medicine in May also opened a center to study post-treatment Lyme disease syndrome, but it concentrates on research, not treatments.

“I have seen patients so critically ill, they can’t get up,” Fallon said.

One patient, a 14-year-old boy, was so debilitated he was in a wheelchair and needed dark glasses and headphones to buffer the severe sensitivity he developed to light and noise.

“He spent a number of months at a rehab facility for children and got tremendous help from that,” Fallon said.

Ambrosino said she doesn’t believe she will be cured of chronic symptoms, but the therapy she has been receiving is starting to make a difference.

It has, she said, given her hope.

Kay Lazar can be reached at Kay.Lazar@globe.com. Follow her on Twitter @GlobeKayLazar.
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