One of James Godwin’s favourite pastimes is walking his dog in the woods near his Bedford home. Two years ago after one of these walks, Godwin felt a pain in his arm. “It was like a bee sting,” he says. His wife checked and noticed what she thought was a skin tag. He was also experiencing headaches, sensitivity to light, stomach pains, sleep disruptions and fatigue.
Ten days passed and the irritated area got worse. When his wife checked the spot again, a tiny tick fell off onto the floor. Godwin had heard about ticks and the Lyme disease they can carry. But after two rounds of antibiotics—one prescribed by a doctor at a walk-in clinic and another by his family physician—Godwin still wasn’t feeling better.
Now, two years later, Godwin, 62, says he has good weeks and bad weeks in his battle with Lyme disease. He has vision problems, itchy skin, nausea and fatigue. The disease, he says, has seriously affected his life. “I am more withdrawn than I used to be,” he says. “I don’t want to be around people a lot. I was into everything. I would rather stay home now.”
Lyme disease is carried by blacklegged ticks, more commonly known as deer ticks. They don’t fly or crawl, but rather latch onto people or pets that rub up against the shrubs and brush where the ticks live. The ticks are brown to reddish-orange in colour and, despite their name, they don’t always have black legs. They can be quite small; some are the size of the head of a needle. But when encouraged with blood, they are much larger.
The first confirmed case of Lyme disease in Nova Scotia was in 2002 and involved a resident of the South Shore. According to a press release at the time, that patient was treated but didn’t need hospitalization. That same press release stated that “the risk of Lyme disease is still very low,” even though the ticks responsible for carrying the disease have been present along the Eastern seaboard for several years. The first recorded case of the disease was found in Lyme, Connecticut, where the disease gets its name.
The ticks were first found in Bedford in 2006, in Admiral’s Cove Park near the Eaglewood subdivision, one of a six locations around the province where ticks carrying Lyme disease have been found (the others locations were in Pictou, Lunenburg, Queens, Shelburne and Yarmouth counties).
A plan to spray insecticide in Admiral’s Cove Park was overturned in 2010, with provincial health minister Maureen MacDonald saying there was no science to back up the plan. Later that year, a deer treatment station was set up in the park, part of a federal research study on Lyme disease and the first of its kind in Canada. A deer treatment station consists of a collar-like device that applies a pesticide when deer that carry the ticks come to feed on food.
Up until 2011, members of the public were encouraged to submit ticks they found to the Department of Natural Resources or the Museum of Natural History in Halifax, where the ticks would be tested for Lyme (Godwin says he sent his tick to the Museum and was told they lost the sample). The program ended that year, and now surveillance of ticks is done by active fieldwork, not by public submissions of ticks.
But while officials say the risk of contracting Lyme is low, not all residents in Bedford agree. Donna Lugar, whose home borders the same woods where Godwin’s house lies, is suffering from the effects of Lyme disease, too. She doesn’t recall being bitten by a tick, but says she may have got a bite from a tick in Bedford, or at her sister’s summer cottage in Gold River on the South Shore—one of the areas where Lyme-carrying ticks have been found. She says her first symptoms, which happened from 1999 to 2001 between the births of her two children, were vague: she was constantly tired, her equilibrium was off, pain in her joints and mysterious weight gain.
Her doctor diagnosed with different disorders and ailments from hypothyroidism to temporomandibular joint dysfunction (TMJ). She even saw a neurologist. But after she took treatment for those conditions, her symptoms didn’t improve. It was only when she slurred her speech that she and her family started to take notice that something was seriously wrong.
She started doing research on Lyme disease and mentioned it to her family doctor, who sent her for the enzyme-linked immunosorbent assay (ELISA test), which is used most often to detect Lyme disease. Lugar’s results came back negative for the disease. It was during that research that Lugar learned not only about Lyme, but about others suffering from it as well.
“I can name off all of these people in just doing research in the course of a week,” she says. “It’s not rare, certainly not in Bedford.” She has two clinical diagnoses from doctors; that is, a diagnosis based not on a blood test, but a big picture examination of her past and current signs and symptoms. Godwin, too, had the ELISA test, twice, and both sets of results were negative. According to a Lyme disease fact sheet from the Public Health Agency of Canada, false negatives in the tests can occur if the patient is tested too early (that is, when the bull’s eye rash is present), or if the patient has already taken antibiotics. The same fact sheet says the accuracy of blood tests increases as the disease progresses, but adds that false negatives may still occur in a small number of patients.
“I would like to see a test that says definitely what I have,” Lugar says. “I am one of those people that like to see what I have.” But while she’d like to see a test that can conclusively confirm her diagnosis, she’d also like to see doctors take Lyme disease more seriously. “All of these doctors I have been going to don’t look at the symptoms as a whole,” she says. “It drives me crazy they focus on the individual aspects. I don’t think there are any doctors out there who have a complete understanding of it [Lyme disease] because it affects everyone differently.”
According to Dr. Richard Gould, medical officer of health for the province, doctors in Nova Scotia are constantly being given information on Lyme disease and its affects. He says there have been 120 reported cases of Lyme disease in the province between 2002 and 2011. In 2011, there were 54 confirmed cases of Lyme disease.
Dr. Gould says with early detection, Lyme disease can be easily treated with a short course of antibiotics. As for the testing, he says those tests offered in the province are “reliable and accurate.” The bull’s eye rash, he says, is the signature symptom of the disease, although he says patients may get bitten on a part of their body they don’t easily see, so such a rash can go undetected. “You don’t need to see a bull’s eye rash to say it’s Lyme disease,” he says. Other common symptoms include facial palsy, headaches and arthritis in large joints and skin manifestations. While the use of antibiotics works well in the early stage of the disease, Gould says prolonged use of antibiotics to treat Lyme is “not really a safe practice.”
“There is no evidence to show that has any benefits, and can be linked to other health problems,” he says. Gould says the problem with Lyme is both awareness and prevention. The province has guidelines for prevention that he calls “fairly intensive,” but he says a lot of people are more “blasé,” often preferring not to wear the long-sleeved clothes and pants, especially during hot months when the tick numbers are at their peak.
And early detection is key, too, especially when it comes to seeing and removing the tick. “If you get them [tick] off within 24 hours, you aren’t likely to be infected with Lyme,” Gould says.
He says he’s also concerned about those patients who have chronic symptoms, but no confirmed diagnosis of Lyme. “That’s one of the concerns,” he says. “It’s possible another serious illness is being overlooked.” One physician both Godwin and Lugar went to see about their disease was Dr. Ben Boucher, a family physician in Port Hawkesbury, who they say has helped them tremendously with treatment. Both Lugar and Godwin say Dr. Boucher gave them more hope about their treatment than they had before.
“I had a really good feeling when I left there,” says Godwin, who visited Dr. Boucher twice and received a longer-term prescription for antibiotics he says made him feel better for the first time since the tick bite. “Before I found Dr. Boucher, it was suggested it was all in my head,” Lugar says. She started treatment in the fall of 2011, and says she started feeling better.
Dr. Boucher is now on sick leave from his practice and was unavailable for comment at the time of publication.
Besides Dr. Boucher, Lugar says she’s found a lot of support online. “I am on six Facebook groups all dedicated to Lyme disease,” she adds. She also works with groups such as the Canadian Lyme Disease Foundation (CanLyme).
Another local supporter of awareness and information is Kelly Regan, MLA for Bedford-Birch Cove. While she had heard of the disease before she became MLA, it really came to the top of her agenda in 2009, when she says she was “knocking on doors.”
“It was brought home very graphically,” Regan says of the many residents affected by Lyme she met during her campaign. “I promised to do whatever I could to help combat Lyme.” Regan has help organized public meetings. The largest of those meetings attracted 150 people. That session featured Dr. Ernie Murakami, who became aware of Lyme disease while practicing rural medicine in British Columbia. He now runs a research, education and assistance society to study Lyme disease. At those meetings, residents also watched the 2008 documentary called Under Our Skin by American filmmaker Andy Abrahams Wilson, whose own sister contracted Lyme.
Regan says she believes there is a disconnect between what those with Lyme are suffering and local doctors’ understanding of the disease. “I know a lot of patients who are told they don’t have Lyme, but then they go south [to the United States] to reputable labs and companies, get tested and they do have Lyme,” she says. “Then they get treated and get better.”
She wants the province to be more proactive in getting information on Lyme disease out to the public. She recalls an ad in a local daily newspaper that was “good,” but she says wasn’t enough. “The problem is that information doesn’t go to every household, every spring,” she says. Lugar agrees that awareness and education is key in dealing with the spread of Lyme in Bedford and beyond.
“Stay away from the woods,” Godwin urges. “There are deer everywhere you go. People who have seen me go through it, well, some people understand it and others say, ‘What are my chances of getting it?’”
“People around here don’t think about it,” says Lugar. “Check yourself from top to bottom [for ticks]. People need to take responsibility for their health.”