As soon as she woke up, Sue Coombs knew something was wrong. “I couldn’t put my left leg down. There was so much pain in my knee, I couldn’t walk." The date was June 23, 2006. Doctors couldn’t give the Standish Shore resident a clear diagnosis –– she was told she might have everything from Lupus to Fibromyalgia to Chronic Fatigue Syndrome.

When Lyme disease was suggested, Coombs’ primary care doctor was skeptical because she didn’t have the telltale signs –– a bull’s-eye shaped rash, with a red dot the bite site. An early blood test also turned up negative.

“They said it was in my head, you’ll be fine, just rest,” she said. Even her own brother, a doctor himself, didn’t believe she had Lyme Disease.

Through it all, the pain persisted.

The entire ordeal was a long, painful, frustrating journey. And as Coombs discovered, it’s a journey she shared with many of her neighbors in the Standish Shore neighborhood and other parts of Duxbury.

“I was kept awake at night by spasms,” she said. “You wanted to shriek with pain.”

Eventually, Coombs found a Cape Cod-based doctor who put her on a course of high-dose antibiotics, and she began to heal. After being a slave to the disease many wouldn’t acknowledge she had, Coombs took her last pill this year on July 4.

The entire ordeal was a long, painful, frustrating journey. And as Coombs discovered, it’s a journey she shared with many of her neighbors in the Standish Shore neighborhood and other parts of Duxbury.

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As soon as she woke up, Sue Coombs knew something was wrong. “I couldn’t put my left leg down. There was so much pain in my knee, I couldn’t walk."

The date was June 23, 2006. Doctors couldn’t give the Standish Shore resident a clear diagnosis –– she was told she might have everything from Lupus to Fibromyalgia to Chronic Fatigue Syndrome. When Lyme disease was suggested, Coombs’ primary care doctor was skeptical because she didn’t have the telltale signs –– a bull’s-eye shaped rash, with a red dot the bite site. An early blood test also turned up negative.

“They said it was in my head, you’ll be fine, just rest,” she said. Even her own brother, a doctor himself, didn’t believe she had Lyme Disease.

Through it all, the pain persisted.

“I was kept awake at night by spasms,” she said. “You wanted to shriek with pain.”

Eventually, Coombs found a Cape Cod-based doctor who put her on a course of high-dose antibiotics, and she began to heal. After being a slave to the disease many wouldn’t acknowledge she had, Coombs took her last pill this year on July 4.

The entire ordeal was a long, painful, frustrating journey. And as Coombs discovered, it’s a journey she shared with many of her neighbors in the Standish Shore neighborhood and other parts of Duxbury.

Many residents in more wooded areas of Duxbury have contracted the disease –– and that number is growing. In 2001, there was only one reported case of Lyme Disease in Duxbury, according to statistics kept by the Duxbury  Board of Health. The numbers grew at an alarming rate from there: eight cases in 2003, 16 in 2004, and 33 in 2005. So far in 2008, there have been 23 reported cases –– and July is typically the month with the highest incidence of Lyme, according to the CDC.

In 2005, there were 331 cases of Lyme reported in Plymouth County, according to statistics from the Department of Health. The county-wide average incidence rate per 100,000 people is 70. Duxbury’s incidence rate is 228.

The problem is concrete enough that Duxbury town officials put out feelers to the State Department of Health.

Will Lapsley is an intern with the Duxbury Board of Health, and when he applied for the job he knew Duxbury was looking to try to disseminate more information about Lyme Disease.  Lapsley, a public health graduate student from UMass-Amherst (originally from Plymouth) has been working with the town to increase awareness.

Lapsley pointed out that since ticks cannot be controlled with pesticides the way that the Plymouth County sprays for mosquitoes, prevention is really the only way to control the diseases they spread.

“What I’m trying to get across most is the idea of personal prevention.”

Lapsley has been putting up information posters on hiking trails and on the golf courses in town. Duxbury held a forum on Lyme Disease last fall at the Duxbury Free Library that was attended by local residents, and state and county officials. Lapsley is planning two more forums this summer: one at the senior center at 10:30 a.m. on Aug. 5, and another at the library Aug. 7 at 6 p.m.

Diagnosis: Difficult

Marie Gill of Allen’s Lane and her four children all contracted Lyme disease four years ago.

The black-legged deer tick carries the bacteria that causes Lyme, usually picked up from the tick’s larval forms biting mice, which are the originally carriers. The female of the species, shown here, is more apt to bite humans and is about the size of a poppy seed.

“Definitely, the issue was the diagnosis of it,” she said. “It’s difficult getting a diagnosis for kids, and doctors are not aware that they might not test positive. You’ll test positive six month later, but in the meantime you’re sick.”

She’s not sure how the children contracted the disease, as they were young at the time and they never saw the ticks (neither did Coombs.)

“People need to be constantly aware,” she said.

Although no fatalities have been linked to Lyme Disease, the effects of the disease can linger after the bacteria is gone. One of Gill’s children was left partially blind by the disease.

“It took six months to get my youngest diagnosed,” she said. “By that point her eyes were a mess, and she had to go to the retina institute.”

She said some of the symptoms her children displayed were muscle aches, soreness and sensitivity to light.

“It’s not going to go away,” she said. “We have tons of deer in Duxbury and the weather isn’t going to change. Year round people can be at risk.”

Gill’s family is healing, and they are focusing on spreading awareness to others. “I’m grateful that we made it out of the illness and are now on the other side,” she said. But some of her neighbors aren’t so lucky.

“People have called me, saying they’re depressed, paralyzed,” she said. “They used to run and now can’t walk.”

Kate Eldredge of Goosepoint Lane’s  two children contracted the disease four years ago. One, 2 1/2 years old at the time, had the tell-tale bull’s-eye rash and was treated immediately.

“People have called me, saying they’re depressed, paralyzed,” she said. “They used to run and now can’t walk.”

Her four-year-old, however, was a different story. Since she didn’t have the rash, doctors wouldn’t give her a clear diagnosis and she became very sick. She was eventually admitted to Children’s Hospital in Boston.

“We had a rotten experience with doctors,” Eldredge said.

Her daughter spent four months in and out of doctors’ offices, missing school.

“She was an unhappy child,” Eldredge said. “She lost 10 pounds and on a 50 pound kid, that’s a lot.”

Eventually, they found a doctor in Western Massachusetts who would treat her for Lyme. The antibiotics worked, but they’ll never know for sure because there was never a positive test.

Diagnosis for Lyme Disease can be excruciatingly difficult. Often called “the great imitator,” symptoms from the disease can be extremely varied, said Lapsley. There can be neurological symptoms like memory loss, mimicking Alzheimer’s. There can be joint pain like arthritis, facial spasms like Bell’s Palsy and severe fatigue as in chronic fatigue.

“There’s a blood test, but it’s not perfect,” he said. Also, not every patient has the tell-tale bull’s eye rash. Lapsley said he’s heard anywhere from 50 percent to 90 percent of Lyme patients display the rash.

“Nobody really knows the numbers,” he said. Doctors need to use a combination of the symptoms, patient history, and the ticks themselves if they’re caught, to make a firm diagnosis.

“It’s not just a cut and dry thing,” he said.


A controversy over treatment

This can lead to difficulty when there is some doubt as to whether or not a patient has Lyme. In Coomb’s case, she was told she had Lupus and Fibromyalgia. Her primary care doctor couldn’t help her. It wasn’t until she found a doctor on the Cape who had been able to help several of her neighbors on Standish Shore cope with the disease.

Dr. Sam Donta, who has offices in Falmouth and Boston, has been working with infectious diseases his entire career. For the last 10 years, he has been working at Boston University Hospital.

He opened a Lyme clinic in the late 80s, when the disease was really exploding in rural Connecticut,. He realized there was a group of patients whose Lyme symptoms lingered even after the initial antibiotic treatments.

He said he sees many patients from towns like Duxbury on the South Shore.

“It’s to be expected, where you have deer and mice that’s what happens.”

Patients who have either been misdiagnosed or who have not gotten better after an initial round of treatment often wind up in Donta’s office.

“The test doesn’t tell you if you still have it, just that you’ve been exposed,” said Donta. “If it’s negative  it doesn’t prove you don’t have Lyme –– it’s circular reasoning."

He said the test for Lyme isn’t a detection of the disease itself, it’s a test for antibodies, which can be slow to build up in a person’s body. That’s why, he said, many people –– like Sue Coombs –– test negative for the disease if the test is taken too early.

“The test doesn’t tell you if you still have it, just that you’ve been exposed,” said Donta. “If it’s negative  it doesn’t prove you don’t have Lyme –– it’s circular reasoning.

“We don’t want people to stay on antibiotics for longer than they need to,” he said, “but we’ve learned certain antibiotics do help and others don’t.”

He said the only research that’s been done was one trial with a month of IV antibiotics and a two months of oral antibiotics and it didn’t work.

“It’s like doing one cancer trial and saying it doesn’t work, so stop there,” he said. “National Institute of Health never wanted to fund additional treatment trials.”

The issue of antibiotics is at the heart of a controversy over the treatment of Lyme Disease.

Donta is one of a group of doctors Lapsley called “Lyme literate.” Many of these doctors believe that people whose original Lyme diagnosis goes untreated can develop a more persistent, more severe form of “chronic” Lyme disease.

The problem with aggressive antibiotic treatment for Lyme disease, said Lapsley, is that high-dose antibiotics can sometimes make patients sicker, or even contribute to some bacteria becoming resistant.

The controversy is even the subject of a documentary film, “Under Our Skin,” which depicts doctors having their licenses revoked for aggressive Lyme treatments.

Dr. Bela Matyas, medical director of the epidemiology program for the state health department, acknowledged the controversy but said the state’s position is not to get involved.

“This is a disease where there are differences of opinion,” he said. “It’s not our place to tell doctors how to treat patients.”

“This is a disease where there are differences of opinion,” he said. “It’s not our place to tell doctors how to treat patients.”

He did acknowledge that the state is trying to get the information out to physicians that Lyme patients don’t always present the classic bull’s-eye rash or other symptoms.

“It still comes down to the doctors own feelings about something,” he said. Some of this is philosophical, some of it is what people’s own experience.  If someone sees a lot of cases they can get a better idea of the range.”

Where there are deer, the ticks will follow

Why has Duxbury seemed to have such a high incidence of Lyme? It’s no mystery, according to Dr.  Matyas.

“Standish Forest has lots and lots of deer ticks,” he said.

For Lyme disease to be a problem in the community, Matyas said, three things need to be present. Deer, deer ticks, and the mice that carry the bacteria that causes Lyme. Mice are actually the original carriers: they are bitten by the tick’s larval and nymph forms, which then grow to adults that bite deer and sometimes humans, Matyas said.

“Mice and deer are found everywhere,” he said. “The problem is that more and more of those three things are coming together” in areas where humans live.

“As we develop more, we’re encroaching on their area,” said Lapsley of the deer population.

In addition to forested areas, deer ticks can live in the dune grasses on places like Duxbury Beach. Matyas said the ticks are more prevalent in areas with new-growth forest.

“It’s driven by the ecology of it,” he said.

Tracking the disease from a statistical standpoint can be tricky, said Matyas. Because the symptoms of Lyme Disease can be easily mistaken for other diseases, or ignored for long periods of time, it’s difficult to say when the infection was first contracted.

“One of the problems is that the incubation period is so variable,” he said, noting that it can be anywhere from a few days to a few years. Although it might seem that certain areas of Duxbury are “hotspots” for the disease, Matyas said the state doesn’t track incidents that way.

“There’s no guarantee that they got it in that community.”

 

‘We haven’t done enough’

Both Matyas at the state level and Lapsely in Duxbury are working to raise awareness of Lyme disease in general. There are some other things in motion in regards to getting the word out on Lyme disease.

Duxbury’s state representative Daniel Webster has been involved in several initiatives to make it easier for doctors to get information on Lyme disease. He sponsored a bill, currently working its way through the House of Representatives, aimed at increasing education about the disease. Eldredge called him “a great advocate.”

“These programs would be aimed at tick borne diseases overall, and would require DPH to establish programs with doctor and nursing programs to include Lyme diagnosing information,” he said.

He pointed out that patients who suffer from Lyme long term can run into trouble with their insurance companies.

In addition to the bill, Webster worked to secure money to fund a state Lyme Disease commission and to study, among other things, the possibility of setting up a Lyme disease research center in Massachusetts. He feels other states, such as Connecticut and New York,  are further along in their efforts to fight the disease.

“There’s no one answer to this,” he said. “This is kind of a two-prong problem: prevention, and if somebody had Lyme disease, we’ve got to learn how to diagnose and treat it early.”

Dr. Donta believes there is little push from the medical community to do more for those who suffer from Lyme.

“There is no leadership,” he said. “There is a bill before Congress and it’s been there for years. Lyme doesn’t command attention as much as AIDS, war, heart disease, cancer. Everything else gets a higher priority because Lyme is not killing anyone, but people are still suffering.”
“We need a better test,” he added.

Back on Standish Shore, the residents who have battled Lyme disease are working to ensure it won’t happen to anyone else. Gill said Duxbury School Superintendent Susan Skeiber has been good about disseminating information during outdoor sports seasons, and sending home information with younger students.

“We dealt with it four years ago and it has only gotten worse,” Gill said “Hopefully people are more educated.”

“People don’t recognize the problem in this area and it’s all over Plymouth County,” said Eldredge.

With more awareness, even if a tick bite occurs, if the disease is caught early enough, the treatment is easier. Gill’s disease was mild compared to her children’s case.

“Be as persistent and adamant as you can ... if you think you have Lyme,” she said. “You have to be your biggest advocate.”

“It’s like a chronic flu,” she said. “I was on vacation and started to get sick, my body felt like flu and as soon as I had antibiotics, within 24 to 48 hours I felt different.”

Gill’s advice for those who think they have the disease is to keep pushing back against the doctors until a clear diagnosis is given.

“Be as persistent and adamant as you can ... if you think you have Lyme,” she said. “You have to be your biggest advocate.”

In the meantime, Coombs, Gill and Eldredge hope that those in the community will continue to get educated about the disease.

“We haven’t done enough,” said Eldredge.

 

This special report was written by Justin Graeber with additional reporting by Autumn Gould. Editing and layout by Josh Cutler. Special thanks to Janet Whittmore, Will Lapsley and the Duxbury Board of Health for assistance. Sources referenced include the Center for Disease Control, Mass. Department of Public Health and the Lyme Disease Association Inc.