WEST BATH — Elizabeth Nelson walks with a cane in case she feels lightheaded or unbalanced— chronic symptoms she’s been dealing with for more than half her life.

The 30-year-old from the small, coastal town of West Bath believes her health issues stem from a long-ago tick bite that left her with what’s known as post-treatment Lyme disease syndrome. Nelson said her symptoms, including fatigue, nausea and joint pain, have been debilitative and frequent.

Scientists estimate that 5% to 20% of those who contract Lyme disease, caused by the bite of an infected deer tick, continue to have symptoms long after the bacteria has cleared their body.

As ticks expand their range, Lyme disease has become a growing public health issue in Maine, which had a record 4,257 cases last year, and there is ongoing research into why some patients continue to have symptoms for months or years.

MaineHealth and Tufts University in Boston are currently conducting a $20.7 million study of the condition, also called chronic Lyme. They are researching whether certain strains of the Lyme bacteria — there are 15 — are more likely to cause chronic Lyme, as well as the immune response to the infection and genetics.

While scientists study the underlying causes and potential remedies, patients like Nelson are left navigating a healthcare system that currently doesn’t have a proven way to treat the condition.

While Nelson said she has never found a tick on her, she suspects she was bitten at a sleepaway camp in fall of 2009, when she was 13. After the camp, she said she developed chronic Lyme symptoms like fatigue, gastrointestinal problems and pain, that kept worsening over the next several months.

One day in July 2010, she had a 103-degree fever and was unable to walk 10 feet from the bedroom to the bathroom. Her parents brought her to the emergency room at Mid Coast Hospital in Brunswick.

Nelson shared hospital antibody test results from 2010 and 2025 with the Portland Press Herald that showed she had been previously infected with Lyme disease. The 2025 records showed she also tested positive for previously having anaplasmosis and babesiosis, which are also transmitted by the deer tick.

Nelson felt that doctors didn’t believe her until the 2010 test results confirmed her suspicions.

“I suspected it, but it was good to see those test results on paper so they would believe me,” Nelson said. “So they wouldn’t think this was some attention-seeking endeavor.”

STUDYING CHRONIC LYME

The five-year study by MaineHealth and Tufts includes following 60 Maine patients within 48 hours of them contracting Lyme disease, to see if long-term symptoms persist. The study, funded by the National Institutes of Health, aims to eventually follow 1,000 patients in Maine and Massachusetts.

Lyme disease is caused by the bite of an infected deer tick that has been attached for over 24 hours, according to the U.S. Centers for Disease Control and Prevention. While scientists have been studying chronic Lyme for decades, they have not yet pinpointed a cause or found effective treatments.

Dr. Robert Smith, a MaineHealth Institute for Research scientist who is heading up the Maine component of the research, said the goal is to develop treatments that work in easing chronic symptoms.

“We’re taking a hard look at a number of hypotheses on what causes post-treatment Lyme disease syndrome,” Smith said.

Chronic Lyme can be difficult to diagnose, experts say.

Durland Fish, a Yale University epidemiologist and CEO of the American Lyme Disease Foundation, said many patients are misdiagnosed because there are many other conditions that mimic chronic Lyme, including other autoimmune disorders. Sometimes, he said, there are no answers for why patients are experiencing symptoms.

“There’s a lot of nonspecific illnesses whose causes are unknown,” Fish said. “Not every condition can be diagnosed.”

Kerry Nelson, Elizabeth’s mother, said doctors attributed her daughter’s illness to other conditions, even offseason influenza.

“They said it was teenage angst, stress. They chalked it up to everything except Lyme,” said Kerry Nelson, 70, who believes she also has chronic Lyme disease.

Elizabeth Nelson said being not believed by doctors, especially at such a young age, was difficult for her emotionally.

“I started to think, ‘Maybe it’s all just me,'” she said.

Meghan Gorchoff, Elizabeth Nelson’s therapist, who has also suffered from chronic Lyme, said not being believed took a toll on Elizabeth’s mental health, but she has been resilient.

“She had PTSD from being shuffled around, from people denying her reality,” Gorchoff said.

Angele Rice, 48, of Bath, said she tested positive for Lyme 18 years ago, and she’s been dealing with persistent symptoms ever since.

“It feels like your body is in this constant state of where it’s fighting itself,” said Rice, formerly an activist with the now-defunct Midcoast Lyme Disease Support and Education group.

Rice said she has been having headaches, environmental and food allergies, including to pineapple, nuts and beans. Other symptoms she’s had over the years include fatigue, joint pain, a burning sensation in her legs, night sweats and poor digestion.

She said a strict, gluten-free diet and vitamins have helped, and she’s recovered to the point where she’s now able to work up to 32 hours per week.

EDUCATION AND PREVENTION

What is not effective in treating chronic Lyme symptoms, according to the CDC, is taking long-term antibiotics.

If a tick bite is discovered early on, a course of antibiotics for up to 30 days is the recommended treatment. But some patients take them for months, even years.

Fish, the Yale epidemiologist, said many people are misdiagnosed with chronic Lyme and given long-term prescriptions, which is “dangerous for public health.”

“It’s a cycle of misinformation and mistreatment, and unfortunately these patients are paying the price,” Fish said.

Taking long-term antibiotics can disrupt a patient’s gut health, according to the CDC, and lead to conditions like C. diff, a bacterial infection that causes inflammation of the colon.

Elizabeth and Kerry Nelson, and Rice all said they were prescribed antibiotics for months at a time.

Elizabeth Nelson said she was aware of the risks, and was always closely monitored by her doctors. All three said they believed the antibiotics helped them improve, although Rice said she was hospitalized once for a C. diff infection.

The women said there should be more focus on preventing tick bites.

Elizabeth Nelson said she has a hobby selling collectibles on eBay, and works to raise awareness of Lyme disease through the Nelson Family Project education campaign.

“I wanted to do something to try to make sure nobody has to go through what I’ve had to go through,” Nelson said.

The Maine CDC and the state’s major health systems operate public education campaigns to warn people about the dangers of ticks. Using repellent, wearing long clothing during hikes, doing tick inspections after being outdoors, checking pets and frequently washing clothes are some ways to prevent tickborne diseases.

“We should be doing more prevention,” Rice said. “That’s something we can all agree on.”