Lyme Disease Symptoms Linger


West Lebanon — Alan Eaton, a recently retired entomologist at the University of New Hampshire Cooperative Extension, tucks his pant legs into his 15-inch-tall rubber boots when he goes trout fishing.

The rubber is too slick for ticks to grab onto, he said in a phone interview last week.

The boots, along with DEET-based insect repellent and daily tick checks, are some of the precautions Eaton takes to ward off what have become increasingly common tick-borne infections, the most common of which is Lyme disease.

Those types of precautions are increasingly important for people throughout the Twin States, especially those venturing outside in the warmer weather, given that the number of cases of tick-borne diseases has grown rapidly.

“There’s been tremendous changes over the almost 30 years that I’ve been doing this,” Eaton, a Barrington, N.H., resident, said of his study of ticks in the Granite State, which he began in 1988.

Initially, ticks were hard to find, Eaton said, recalling how it took an “army” of researchers hundreds of hours to locate four ticks for an early research project. Now, ticks are living in most corners of the state, though parts of Coos County still have small populations, he said. Ticks similarly have spread throughout most of Vermont, though there still are low numbers in parts of the Northeast Kingdom, according to the Vermont Department of Health.

As the number of ticks has risen and their range has expanded, the incidence of tick-borne diseases, the most common of which is Lyme disease, has also increased.

Lyme disease, first identified in Lyme, Conn., in 1975, has become increasingly common in New England and beyond. Overall, across the U.S. the number of annual reports of tick-borne diseases more than doubled, from about 22,000 to 48,000, between 2004 and 2016, according to a recent CDC report. Lyme disease accounted for 82 percent of all such illnesses reported during that period.

Last year was the worst year so far for Lyme disease in Vermont, with nearly 1,100 confirmed and probable cases, said Bradley Tompkins, chief of the Vermont Department of Health’s tick-borne disease program. That’s a new record, he said. It’s well above the 763 recorded in 2016.

Vermont and New Hampshire both rank near the top in terms of the rate of Lyme disease. In 2016, Vermont had a rate of 78 confirmed cases per 100,000 people and New Hampshire had a rate of about 52 cases per 100,000, according to the CDC. Only Maine topped Vermont, with a rate of 86 cases per 100,000 people.

Some of the increase may be due to increased awareness and testing, but some of it also is likely due to an increase in ticks and the bacteria they carry that transmits the disease, Borrelia burgdorferi, Tompkins said.

“Our focus here is on these (tick-borne) diseases spreading into parts of Vermont where they might not have been before,” Tompkins said, noting that numbers of cases seem to be climbing in central Vermont, including Orange and Addison counties. “The last sort of spot of Vermont that is kind of uncharted territory for tick-borne disease is the Northeast Kingdom.”

Additional reasons driving the increase in Lyme disease include the fact that warmer temperatures mean that ticks are active for more of the year, said Dr. Jeffrey Parsonnet, an infectious disease specialist at Dartmouth-Hitchcock Medical Center and Geisel School of Medicine.

He never used to see new cases of Lyme until April, but in recent years he has been seeing them starting in March, he said.

“There’s no question that this is a major health problem in the Northeast,” he said.

People contract Lyme disease after being bitten by black-legged ticks that are infected with Borrelia burgdorferi, which they pick up from feeding on mammals such as white-footed mice. It typically takes at least 24 hours of being embedded in a person’s skin for a tick to transmit the disease.

Infected people exhibit symptoms such as fever, headache, joint pain, muscle aches, fatigue or a rash soon after a tick bite, according to the Vermont Department of Health. About 70 percent of people with Lyme disease report the characteristic bull’s-eye rash.

Symptoms may begin as soon as three days after a tick bite, but can appear as long as 30 days afterward.

The actual incidence of Lyme disease likely is as much as 10 times higher than the CDC’s numbers, said Parsonnet, who noted that members of his family and roughly half of his department have contracted Lyme disease.

Doctors don’t always report cases of Lyme disease, Parsonnet said. They may diagnose and treat it without sending a sample to a lab, where positive samples are tallied, and some patients recover without treatment.

“It’s a public health problem,” Parsonnet said of Lyme disease.

But, he added, “there are bigger ones,” such as smoking and obesity, and tick bites can be prevented.

Prevention

During the warmer months, people can protect themselves by wearing long sleeves and long pants when they go outside, Tompkins said. Light-colored clothing makes ticks easier to spot, he said. In addition, Tompkins recommends that people tuck their pants into their socks.

He also suggests an EPA-recommended insect repellant, a list of which can be found online at epa.gov/insect-repellents/find-repellent-right-you.

People also can coat their clothing and, hunting and camping gear in permethrin, which repels and kills ticks, Tompkins said.

Homeowners can discourage ticks from inhabiting their yards by removing leaf litter, fencing out deer and eliminating small mammals — such as white-footed mice, the primary hosts of the Lyme disease bacteria. This, however, has not been shown to reduce people’s risk of Lyme disease because people typically do not restrict their movements to their own yards, Tompkins said.

None of these methods are fool-proof, which means that people should follow up a visit to the outdoors with a shower and a tick check. And, even if people don’t find a tick biting them, they should monitor themselves for symptoms.

Should one surface, Tompkins suggests a visit to a health care provider.

There is no vaccine for Lyme disease on the market currently, but Tompkins said there is one under development.

Treatment

If prevention doesn’t work, prompt treatment with antibiotics, which typically involves a few weeks of an antibiotic such as Doxycycline, Cefuroximeaxetil or Amoxicillin, cures most people, Parsonnet said.

Less common, but more challenging cases occur when people are not treated properly initially, Parsonnet said. In those cases, they may develop late complications, which fall into three categories: heart, joint or neurological problems, he said.

Treatment for these late complications, which the CDC calls “Post-treatment Lyme Disease Syndrome,” is less clear cut. Most doctors still begin with antibiotics. Some advocate for long-term antibiotics, while others point to studies that show that long-term use of antibiotics is not effective and may be harmful.

“I don’t believe in endless courses of antibiotics,” Parsonnet said. “I would never knowingly give a patient a treatment if it hadn’t been proven.”

Once a patient has tried conventional therapy, Parsonnet said he is open to patients trying non-harmful alternative therapies such as acupuncture, aromatherapy, essential oils and dietary manipulations.

“We don’t know why people have these symptoms,” Parsonnet said. “It’s not all in your head.”

About 10 to 20 percent of people have symptoms that persist after treatment, Tompkins said.

Experts are “not sure what the cause of that is,” he said.

Parsonnet drew a parallel between lingering Lyme disease symptoms and back pain, for which conventional medicine often doesn’t offer an easy solution and patients might find relief through therapies such as yoga or acupuncture.

“Doctors are not very good at symptom therapy,” he said.

Seeking Support

To support people struggling with symptoms lingering from Lyme disease and other tick-borne illnesses — such as Babesiosis, Powassan Virus, Anaplasmosis, Borrelia miyamotoi — two new support groups in the Upper Valley have been established in the past year.

Emily Marsh, a mother of two who studied ticks in college, started a Bradford, Vt., support group in April.

Marsh, who said she has Lyme disease and three other related viral infections, said the goal of the group is to find other people like her who may look fine, but “basically feel horrible all the time.”

“People do not understand it,” she said.

As a result of her illness, which she believes she contracted from a tick while hiking the Appalachian Trail, she can’t work a full-time job. She now works two days a week as a landscape gardener.

She has some good days and some bad days. At her worst, she said it’s too much effort to get up to turn off her alarm clock. The fatigue keeps her from her previously active lifestyle, which included playing with her kids and long hikes each week.

“It’s been a struggle mentally more than physically,” Marsh said.

Her other symptoms have included anxiety, panic attacks, diminished cognitive abilities, headaches and body aches.

Marsh and her 8-year-old daughter, who also has Lyme disease, saw four or five doctors before being diagnosed.

She said she gradually is healing with the assistance of an herbalist, a naturopathic physician and diet changes.

“It’s pretty clear that this is super complex and we need to do lots of different things to get people well,” Marsh said.

Randolph Center resident Marilyn Lambert, 34, was diagnosed with Lyme disease more than eight years ago, but has struggled with a variety of health problems for most of her life. Her symptoms have included facial twitches, insomnia, joint pain, digestive problems, back pain, anxiety and depression.

She grew up on a dairy farm. As a kid, she worked and went to school, but didn’t have much fun.

“I didn’t know what was wrong with me,” she said in a recent phone interview.

She was halfway through a master’s degree in psychology when all of her symptoms worsened. She wasn’t able to see well, was having trouble walking, sitting and remembering things.

“I consider myself a very strong and capable person,” she said. “There comes a point when it’s not a choice anymore.”

She dropped out of school and moved back to Vermont to be with her family.

She underwent three years of intensive antibiotic therapy, has found some relief in herbs and bounced from doctor to doctor. She has become a nutritional therapist and believes in the power of food and healthy habits.

The process of healing is daily for her. She wakes up and goes to bed at the same times every day. Each morning, she follows a two-hour routine, which includes stretching, walking her dog, taking supplements, reading her Bible and cooking breakfast.

“I don’t love to cook,” she said. But, “preparing myself healthy food that is therapy. That hands-on approach is very healing.”

Her diet is high in healthy fats, low in carbohydrates and high in vegetables.

She currently works as an administrator in a naturopathic office, but hopes to help people through nutritional therapy and through the Lyme support group she started in Randolph last year.

“The best thing I can offer is that of a person in the same sinking boat, who has found a better way of reaching shore than is commonly known,” she wrote in an email she sent after the phone interview. “I want to empower people with the knowledge of this illness that is required when they are seeking treatment.”

Amanda Narowski, a 29-year-old landscape gardener, has joined the Bradford support group as a way to discuss the challenges of having Lyme disease.

Narowski began experiencing symptoms, primarily fatigue, over a year ago. She also has trouble focusing, depression, anxiety and rage. She has some pain and had a headache linger for a month.

After seeing six or seven different doctors, Narowski eventually learned she had Lyme disease. She has found a naturopathic physician who listened to her and is addressing her symptoms through herbs and supplements. She also is undergoing magnetic therapy, which uses magnets in an effort to clear the body of disease.

It’s hard to say at this point whether she’s getting better. She still has good and bad days, she said.

As a result of her illness she has reduced the hours she works.

One thing she hasn’t changed is her attitude toward ticks. She has days when she pulls off nine ticks after landscaping. She’s tried putting her clothes in the dryer after coming inside from a day outdoors, but has found live ticks can survive the heat.

“I have to take it sort of casually because otherwise I will freak out,” she said.

Despite her knowledge of the risks of tick-borne illnesses, Narowski often wears shorts while she’s working.

“On the one hand, yes prevention is important,” she said. “At the same time you have to live your life and not be afraid to go outside without your socks over your pants.”

Next Steps

In addition to taking steps to avoid ticks and the illnesses they carry, Vermont Department of Health officials are asking members of the public to keep their eyes out for another kind of tick, the lone star tick, which has been found in all of Vermont’s neighboring states, but has not yet been confirmed in the Green Mountains.

The lone star tick can carry ehrlichiosis, a bacterial infection which can cause symptoms such as fever, headache, fatigue and muscle aches. Symptoms usually appear within a couple of weeks after a person is bitten by an infected tick.

Vermonters who think they’ve found a lone star tick — the females have a distinctive white spot — are asked to mail a specimen and a form found online at healthvermont.gov/disease-control/tickborne-diseases/project-lone-star to the Department of Health: Project Lone Star, 108 Cherry Street, Suite 304, Burlington, VT 05401.

The form and photos of the tick also can be emailed to AHS.VDHProjectLoneStar@vermont.gov.

Researchers are also investigating ways to genetically modify ticks and white-footed mice to prevent them from transmitting the bacteria, Eaton said.

But, Eaton said, researchers need to be cautious when they are genetically modifying organisms.

They “want to be really sure that we’re not opening Pandora’s box,” he said.

Because of the tremendous changes in the spread of ticks over the past three decades, Eaton said, “who knows what else is going to happen?”

More information about Lyme disease and ticks in the Twin States can be found online at healthvermont.gov/disease-control/tickborne-diseases or dhhs.nh.gov/dphs/cdcs/lyme/publications.htm.

The Bradford, Vt., Lyme support group will meet next at noon on Wednesday, May 16, at the Bradford Public Library on Main Street and at 6 p.m. on Monday, May 21, at the Bradford Elementary School. For more information, contact emilyrmarsh@yahoo.com. The Randolph group meets at 6 p.m. on the last Monday of every month at 106 Hebard Hill Rd. For more information, visit the Central VT Lyme Disease Support Group on Facebook.

Nora Doyle-Burr can be reached at ndoyleburr@vnews.com or 603-727-3213.



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