Patients suffering from long-term Lyme disease symptoms face difficulties

By Maine News Now Staff

WEST BATH — For more than half of her 30 years, Elizabeth Nelson has lived with symptoms that arrived unexpectedly and never fully went away. Fatigue. Nausea. Joint pain. The kind of dizziness that made her keep a cane within arm's reach, just in case.

Nelson, who lives in the small coastal town of West Bath, believes all of it traces back to a single event: a tick bite she never saw, likely picked up at a sleepaway camp in the fall of 2009, when she was 13.

What followed was a years-long journey through a medical maze that, in many ways, mirrors the experience of thousands of other Mainers dealing with what researchers call post-treatment Lyme disease syndrome, or chronic Lyme.

Nelson's symptoms began after camp and worsened steadily over the following months. In July 2010, she spiked a 103-degree fever and could not make it 10 feet from her bedroom to the bathroom. Her parents rushed her to the emergency room at Mid Coast Hospital in Brunswick.

She had never noticed a tick on her body, but hospital antibody tests from that time confirmed she had been infected with Lyme disease. More recent testing, from 2025, also showed prior exposure to anaplasmosis and babesiosis — two other illnesses carried by deer ticks.

For Nelson, the confirmation was validating in a way that went beyond a medical diagnosis. "I suspected it, but it was good to see those test results on paper so they would believe me," she said. "So they wouldn't think this was some attention-seeking endeavor."

Her mother, Kerry Nelson, 70, recalled that physicians offered other explanations before settling on Lyme. "They said it was teenage angst, stress. They chalked it up to everything except Lyme." Kerry Nelson also believes she herself is dealing with chronic Lyme.

The experience of not being believed, particularly at such a young age, left a lasting mark, Elizabeth Nelson said. "I started to think, 'Maybe it's all just me.'"

Her therapist, Meghan Gorchoff — who has also lived with chronic Lyme — said the dismissals took a serious toll. "She had PTSD from being shuffled around, from people denying her reality," Gorchoff said.

A Growing Public Health Concern

Lyme disease is caused by the bite of an infected deer tick that has been attached to the skin for more than 24 hours, according to the U.S. Centers for Disease Control and Prevention. In Maine, the disease has become an increasingly significant public health issue as tick populations expand their range.

The state recorded a record 4,257 cases last year, and scientists estimate that somewhere between 5% and 20% of those who contract Lyme continue to experience symptoms long after the initial infection has cleared their body. There are 15 known strains of the Lyme bacteria, and researchers are still working to understand why some patients remain sick while others recover fully.

To help answer those questions, MaineHealth and Tufts University in Boston launched a five-year, $20.7 million study of the condition. Funded by the National Institutes of Health, the research is following 60 Maine patients from within 48 hours of their contracting Lyme disease, with plans to eventually expand to 1,000 patients across Maine and Massachusetts. Scientists are investigating whether certain bacterial strains are more likely to cause chronic symptoms, as well as the role of the immune response and genetics.

Dr. Robert Smith, a scientist at the MaineHealth Institute for Research who is leading the Maine arm of the study, said the goal is to eventually develop treatments that work. "We're taking a hard look at a number of hypotheses on what causes post-treatment Lyme disease syndrome," Smith said.

Diagnosing the Condition

Chronic Lyme remains notoriously difficult to diagnose. Durland Fish, an epidemiologist at Yale University and CEO of the American Lyme Disease Foundation, said many patients are misdiagnosed because a wide range of other conditions can mimic chronic Lyme, including various autoimmune disorders. Sometimes, he noted, there simply are no clear answers for why a patient is suffering.

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

Angele Rice, 48, of Bath, knows that uncertainty firsthand. She tested positive for Lyme 18 years ago and has dealt with persistent symptoms ever since — headaches, fatigue, joint pain, a persistent burning sensation in her legs, night sweats, poor digestion and a growing list of environmental and food allergies, including reactions to pineapple, nuts and beans.

"It feels like your body is in this constant state of where it's fighting itself," said Rice, a former activist with the now-defunct Midcoast Lyme Disease Support and Education group. A strict gluten-free diet and vitamin regimen have helped her enough that she is now able to work up to 32 hours per week.

Treatment and Its Risks

When Lyme disease is caught early, a course of antibiotics lasting up to 30 days is the standard treatment recommended by the CDC. For chronic symptoms, however, there is no proven therapy, and the CDC specifically warns against the long-term use of antibiotics.

Fish, the Yale epidemiologist, said that misdiagnosing patients with chronic Lyme and prescribing extended antibiotic regimens is "dangerous for public health." Prolonged antibiotic use can disrupt gut health and lead to serious complications, including Clostridioides difficile, or C. diff, a bacterial infection that causes inflammation of the colon.

Despite the warnings, Elizabeth Nelson, Kerry Nelson and Rice all said they were prescribed antibiotics for months at a time. Elizabeth Nelson said she understood the risks and was closely monitored throughout. All three women said they believed the medications helped them improve, though Rice noted she was hospitalized once for a C. diff infection.

Education and Prevention

With treatment options limited and the science still evolving, the women said more attention needs to be paid to prevention.

The Maine CDC and the state's major health systems already operate public education campaigns warning about the dangers of ticks. Recommended precautions include using insect repellent, wearing long clothing during outdoor activities, performing tick checks after being outside, inspecting pets and washing clothes frequently.

Rice said prevention is an issue where everyone can find common ground. "We should be doing more prevention," she said. "That's something we can all agree on."

Elizabeth Nelson has turned her own experience into advocacy. She sells collectibles on eBay as a hobby and works to raise awareness through the Nelson Family Project, an education campaign she founded.

"I wanted to do something to try to make sure nobody has to go through what I've had to go through," she said.

As Maine's tick season gets underway and another summer brings Mainers outdoors, those working on the front lines of the disease — from researchers to patients — say the urgency of finding answers has never been greater.

This story was compiled from reporting by Maine News Now staff. Email tips to news@mainenewsnow.com.