With the number of Lyme disease cases in Maine this year approaching the record set in 2013, a voter-approved plan to build an $8 million laboratory to test ticks and do other research comes at a critical juncture in the fight against the debilitating disease.

More than 1,000 Lyme disease cases have been reported annually in Maine since 2011, five times the number reported a decade ago, according to the Maine Center for Disease Control and Prevention. In 2013, Maine set a record with 1,376 cases of the bacterial infection, which is spread in the Northeast by deer tick bites. The National Wildlife Foundation has said that global warming has expanded tick habitat, leading to more Lyme disease.

Additional Images

The new lab, scheduled for completion at the University of Maine in 2017, will accelerate the process of identifying infected ticks and provide information to doctors more quickly, speeding up the diagnosis and therefore the successful treatment of Lyme cases.

That’s important to people like Rebecca Nelson of Scarborough, who finally tested positive in January for Lyme, a disease she believes she contracted decades ago. Nelson wants people to recognize the severity of Lyme and to increase awareness among doctors and the public.

“It was a relief” when she was diagnosed, said Nelson, 39. “I finally knew what was wrong with me. I had gotten so tired of people thinking that I was crazy.” She described symptoms ranging from chronic fatigue, pain and insomnia to anger and short-term memory problems.

“They sound like such generic symptoms,” she said. “I don’t think people believe it’s as debilitating an illness as it really is.”

LYME CASES JUMP IN RECENT YEARS

The Maine CDC has reported 1,231 Lyme infections in the state through November, on track for this year to have the second-highest number of cases on record. The cases spike in the summer when ticks are most active – more than half of 2014’s reported infections came in July, August and September.

Lyme disease has spread across much of the eastern United States, especially the Northeast. Nationally, cases have increased exponentially over the past few years, according to the federal Centers for Disease Control and Prevention. More than 25,000 cases were reported in 2013.

Although the UMaine lab that voters approved Nov. 4 also will research animal and plant diseases and other insect-borne infections, a major component of its mission will be to identify ticks and test them for Lyme. The testing will help researchers determine the scope of the problem and get information on infected ticks more quickly to doctors, increasing the effectiveness of treatments, said James Dill, pest management specialist at the University of Maine Cooperative Extension.

The waiting period for Lyme test results – ticks are currently tested out of state – should decrease from several weeks to about 48 hours, Dill said.

Lyme is notoriously difficult to diagnose, in part because the symptoms – which include joint pain, chronic fatigue and inflammation – mimic other diseases, and many people don’t realize they’ve been bitten by a tick.

Because Lyme is often misdiagnosed, scientists believe the number of actual cases is 10 times greater than reported, said Susan Elias, a researcher with the Maine Medical Center Research Institute.

EFFECTS TAKE TOLL ON DAILY LIFE

Nelson, the Scarborough woman with Lyme, has been seeing doctors for years with complaints about various pains and problems. She tested negative for Lyme in 2007 – she said it was a false negative – and positive for Lyme this year.

The treatment and recovery have been slow, she said, with improvement over the summer but backsliding this fall.

“I don’t know what (feeling) normal is. I don’t remember normal,” Nelson said.

She said the physical effects of the disease are difficult to describe. “The feeling is like when you have the flu and you’re tired and achy and that all you want to do is go to bed. That’s the way I feel much of the time. Your best day is when you feel like you’re almost over the flu,” she said.

Nelson owns a horse stable and gives riding lessons to students, so doctors would often attribute her pain to muscle strains from working on the farm, or fatigue from having young children around the house. But Nelson said she would have pains even when she didn’t strain her muscles, and she later discovered the problem was caused by inflammation from Lyme.

DEBATE IN MEDICAL COMMUNITY

Nelson’s physician, Dr. Keelyn Wu, a Falmouth doctor who specializes in Lyme treatment, has about 50 patients with the disease and had to turn away new Lyme patients because the demand was more than he could handle.

If Lyme is caught early, the treatment is straightforward, with patients taking a course of antibiotics to clear up the infection. But when not diagnosed within a few months of the tick transmitting the bacteria, diagnosis and treatment become messy.

Wu said there’s controversy in the medical community on everything from what constitutes a positive test to how to treat the disease, and even what to call a long-term Lyme diagnosis.

“There are still some doctors who do not believe chronic Lyme disease exists,” Wu said. He concluded after reviewing research that chronic Lyme is real and needs specialized treatment.

“It’s a very individualized disease. No two cases are completely alike,” he said.

Because of a lack of understanding and awareness, the medical community is mostly unprepared for the influx of Lyme cases, Wu said, noting that there are only a dozen doctors statewide with in-depth Lyme expertise.

“There are not enough physicians out there who are able to treat Lyme,” he said. “They don’t know where to start, how to address it or where to refer (patients) to. The testing is often unreliable, a lot of false negatives.”

INDIVIDUAL TREATMENT TAKES TIME

Wu said most primary care practices are not set up to treat people with a long-term Lyme illness – Lyme consultations can take up to two hours, follow-ups at least 30 minutes, and treatment plans are individualized. Compare that to the caseloads of many primary care doctors, who schedule 15 minutes for patient consultations and are dealing with diseases, such as diabetes or asthma, that have a well-known course of treatment, Wu said.

For patients who were initially not diagnosed and have long-term Lyme disease, treating with antibiotics alone is insufficient, he said. So he advocates dietary changes and over-the-counter nutritional supplements in addition to medications. It often takes a lot of mixing and matching before hitting on the correct treatment that eases symptoms.

Nelson takes five prescription medications, including anti-anxiety drugs, and six over-the-counter supplements, including dietary, detox and herbal supplements. Out-of-pocket, she pays about $4,000 to $5,000 per year to treat her symptoms. She said she felt “great” for about 10 weeks in summer and early fall, but started struggling again with pain and fatigue in recent weeks.

IDEAS FOR COMBATING LYME

Dr. Phillip Baker, executive director of the Connecticut-based American Lyme Disease Foundation, said that even in Connecticut, where Lyme disease was discovered, some doctors are not as well-versed in the disease as they could be.

Baker said the federal CDC has an effective training tool on its website about Lyme that counts toward physicians’ continuing education requirements, so promoting the site or other training would be helpful. Baker said the 10 northeastern states where Lyme disease is most common should work together on regional strategies to help combat Lyme.

He said a Lyme vaccine developed for mice “looks promising,” and could be an environmental way to control the problem and reduce the percentage of ticks carrying Lyme.

Although deer carry the ticks that transmit Lyme to humans, the ticks contract the Lyme bacteria from mice, so Baker said vaccinating mice by baiting them in the wild could prove effective. When the mice become vaccinated and produce antibodies to destroy the Lyme bacteria, fewer ticks would become carriers.

A human vaccine for Lyme was available in the late 1990s and early 2000s, but was pulled from the market after some patients complained of arthritis. Although one pharmaceutical company, Baxter International, was researching a new human vaccine, that research is now on hold.

Baker said he doesn’t have much hope that a new human vaccine will be brought to market soon.

STATE STRESSING PUBLIC EDUCATION

In addition to the UMaine bond issue, which Gov. Paul LePage supported, the Maine CDC has intensified its public education efforts about Lyme disease over the past few years, said agency spokesman John Martins.

Public health officials attend events, and the administration promotes May as Lyme Disease Awareness Month. The state also hosts an annual poster contest for students in grades K-8.

For Nelson, the goal is to get through every day with enough energy to operate her business and help around the house. Taking Wu’s advice, she has cut most processed food from her diet, her family now raises more than 50 chickens, 30 turkeys and a cow for home-grown meat, and she has doubled the size of the vegetable garden. She said eating better has helped, or it has at least slowed the progression of the disease.

“I can’t think long-term. It’s too overwhelming,” Nelson said. “I’m just taking it day by day.”

Related Stories