P.E.I. woman finds Lyme disease diagnosis south of the border

A P.E.I. woman wants to raise awareness of her journey to find out what has been making her sick for years. 

Savannah Belsher-MacLean received a diagnosis of Lyme disease from a doctor in Maine in September after three years of testing on P.E.I. for multiple possible illnesses, including celiac, Crohn's, cancer, endometriosis and parasites.

After hearing from some women in the area with similar symptoms to hers, she decided to make an appointment with Dr. Richard Dubocq, a family physician from Maine who has been treating dozens of patients from the Maritimes.

"He looked through all of my blood work, all of the exams, the endoscopy, all of the different results that came back negative and he made the clinical diagnosis that I had Lyme disease," Belsher-MacLean said.

"Honestly it was a relief when I first found out what it was, because I had been getting so many negative results," she said. "When I found that I had a name for it and that we had an action plan, I was relieved." 

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Belsher-MacLean says being tested for Lyme was never suggested to her by her family doctor or nurse practitioner on P.E.I.

She was also concerned by stories of Islanders who tested negative for Lyme disease, but then received positive results from labs in B.C. and the United States.

"I had to decide — do I wait for an appointment with my family doctor or nurse practitioner to possibly be dismissed for suggesting Lyme and possibly get a false negative result," Belsher-MacLean said.

"After three years of feeling sick and having increasingly debilitating symptoms, I wanted specialized care, so I booked with Dr. Dubocq." 

Long-term antibiotic treatment

Since the September diagnosis, Belsher-MacLean has begun treatment with antibiotics and other medications, a treatment plan Dubocq says will take at least a year — possibly up to four years — to put her into remission.

"I've been taking them now for about five months and am starting to see some small improvements at this point," she said.

Belsher-MacLean says she will travel to Maine every three months for the first year of treatment.

"It's been a financial strain and I'm not able to work as much as I had been so that's an additional pressure financially," she said.

'Be persistent'

She says she decided to share her story after being approached by a mother who has been searching for answers for her daughter for four years. 

"That made me realize that I really needed ... to start making public my progress that I found outside of Prince Edward Island," Belsher-MacLean said, to "encourage other people to be persistent."

She would like doctors on the Island to have more treatment options for patients with Lyme disease.

"It is my hope that P.E.I. can adopt a similar policy to what Maine did in 2015," Belsher-MacLean said, "to legislate that physicians can prescribe long-term antibiotics for Lyme disease patients."

'Great deal of caution'

Dr. Greg German, infectious disease consultant for Health PEI, says he can't comment on specific cases.

But he says P.E.I. is following national guidelines when it comes to diagnosing and treating Lyme disease.

"I would have a great deal of caution regarding any tests that do not use CDC [Centers for Disease Control] or Public Health Agency of Canada criteria," said German.

"Because if they use other criteria that is not scientifically validated, it will actually say you have Lyme disease 50 per cent of the time when you don't." 

German cautions Islanders against going outside the province for a diagnosis of Lyme disease but encourages them to come and see him.

"Diagnosis of Lyme disease can be challenging, can be suspect, and just because you've gone off-Island to a private clinic or private lab to get more information does not necessarily mean you have Lyme disease," German said.

"That leads to, unfortunately, those that have those symptoms that we're trying to sort out to feel that they have Lyme disease when in fact they have another condition to explain why they're ill."

German also warns against treatment with long-term antibiotics because he says that can increase the risk of C. difficile infection and drug resistance.

"I feel that there's a message going out that we should be giving long courses of antibiotics and once again that's not supported by any scientific literature," German said. 

"We should not be treating for longer than 21 days for situations where someone feels they have Lyme disease."

Collecting ticks

German says Health PEI has a public education campaign about Lyme disease that will start in April, asking Islanders to submit any ticks they find on themselves or a family member.

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German says he wants to track where Islanders are picking up the ticks and what percentage of the ticks test positive for Lyme disease.

"We're trying to find out if we can catch really junior forms of the tick," German said.

"Which would, if we did find them, suggest that through methods that we don't quite know at this time, that there is reproduction taking place over the winter and that would be new information for us."

German says the research this summer will help health officials decide if they need to do increased surveillance for ticks in certain parts of the Island.

Sharing her story

Belsher-MacLean is pleased that the P.E.I. Health Department is paying more attention to ticks and to Lyme disease. 

She now believes she may have been carrying Lyme disease for two decades.

"I started getting sick when I was 11 years old, showing symptoms in my gut and having migraines, the reproductive pain started and it snowballed," Belsher-MacLean said. 

"I have been building up symptoms that seem unrelated and it all adds up to being the effect of Lyme disease." 

She says she will continue to share her story, in the hopes of helping other Prince Edward Islanders who may be suffering from Lyme disease and not know it.

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