MaineHealth Lyme disease researcher Dr. Robert Smith. Derek Davis/Staff Photographer

MaineHealth is partnering with Tufts University on a new $20.7 million study that will research post-treatment Lyme disease syndrome – often called chronic Lyme – a condition that has puzzled scientists, doctors and patients for decades.

Chronic Lyme, which is estimated to occur in 5% to 20% of Lyme disease cases, can persist for months, even years, after the patient becomes infected with Lyme disease.  Symptoms include fatigue, body aches, joint pain, lightheadedness, insomnia, depression and anxiety.

About 1,000 patients who become infected with Lyme disease, including hundreds of Maine patients, will be enrolled in the five-year study to help scientists determine what is causing symptoms to continue long after the infection has run its course.

Patients will be recruited for the study through their primary care practices starting in the spring. That is the only way a patient can be enrolled. People who currently have Lyme disease will not be able to enroll in the study by contacting MaineHealth.

Lyme is a bacterial infection transmitted by the deer tick, and causes thousands of cases per year in Maine, including a record 2,943 cases last year and 2,544 through Oct. 14 of this year, according to the Maine Center for Disease Control and Prevention.

Dr. Robert Smith, director of the Vector-Borne Disease Lab at the MaineHealth Institute of Research, said the aim of the research is to learn what is the root cause of chronic Lyme disease, which could lead to effective treatments.

“We don’t currently have much in the way of tools to treat this,” Smith said.

Some patients have undergone extensive, long-term courses of antibiotics, but Smith said there isn’t sufficient evidence for that treatment, or others. The U.S. Centers for Disease Control and Prevention says there is no evidence that long-term antibiotic treatment helps with chronic Lyme.

Smith said one of the benefits of the study is that scientists will know for sure that the patients have contracted Lyme disease, because they will do skin biopsies within a day of symptoms, often a bulls-eye rash.

The symptoms of post-treatment Lyme disease syndrome can mimic other, similar conditions, such as chronic fatigue syndrome, caused by other infections or diseases. Sometimes patients believe they have chronic Lyme disease, but there is no way to be sure without biopsies and other testing to determine whether someone has contracted the bacteria from a tick bite.

Smith said there is much that scientists do not know about post-treatment Lyme disease syndrome.

“Is there something about the immune response that is not turned off after an infection?” Smith said. “We see this occurring in a whole array of different infections.”

MaineHealth is also participating in a study of Long COVID, which is when symptoms persist after the coronavirus has cleared from the body.

Smith said that they will also be looking at whether different strains of the bacteria that causes Lyme disease are more likely to result in chronic Lyme.

Meanwhile, the University of Maine’s Cooperative Extension tick lab is continuing its pilot program of establishing tick monitoring sites at 15 locations across the state, including Wells, Orono and Bar Harbor.

Griffin Dill, integrated pest management specialist at the cooperative extension, said the sites were set up this summer and are currently collecting data that measures tick density, soil temperature, soil moisture, air humidity, presence of wildlife and other factors. The goal of the program – which will run for at least five years – is to determine what conditions cause ticks to thrive.

“We want to see the changes in tick abundance at these sites year-over-year,” Dill said.