The number of people affected by Lyme disease in eastern PEI is growing as rapidly as the frustration over the absence of proper testing here in the province.
That same exasperation is shared by many across the province.
On January 23 Chris Robinson introduced an online petition at Change.org (Improve Access to Effective Lyme Disease Treatment in PEI) to present to Health and Wellness Minister Robert Mitchell. The petition had gathered more than 1,000 signatures within a week and calls on PEI health authorities to present accurate statistics on the prevalence of ticks in the province, (confirmed by studies conducted by Dr Vett Lloyd, Mt Allison University, New Brunswick, 2017-18) and to inform physicians and the public about Lyme disease.
Mr Robinson, who lives in Cavendish, is PEI director of the Canadian Lyme Disease Foundation. He is also affected by babesia, a malaria-like bacterial infection associated with tick bites. The petition also calls for an act similar to legislation adopted in Maine which would acknowledge and enable long-term antibiotic use, which Mr Robinson said is each province’s prerogative.
Health and Wellness PEI supplied links to the federal study which concludes: “The Government of Canada has a national leadership role to play in the prevention and control of Lyme disease in Canada.”
One woman, whose husband remains undiagnosed is currently hospitalized with symptoms of suspected Lyme disease.
“There needs to be proper testing, treatment and diagnosis in our province,” said Charmayne MacFadyen, from White Sands.
Her husband Chris started getting sick two years ago, just after Ms MacFadyen discovered a blood-engorged tick on the floor by his side of the bed.
Ms MacFadyen bagged the tick and took it to their vet, who sent it off for testing. The results showed the tick had recently fed and tested positive for the bacterium associated with Lyme disease.
Like 90 per cent of the people who become infected, Mr MacFadyen didn’t develop the telltale bullseye rash and the Elisa test used to detect Lyme was negative. The smoking gun, the positive test results from the dead tick, wasn’t enough evidence to begin treatments, since the tick was not attached to him when it was discovered.
“Until you’re in it, you won’t know you’re in the fight of your life,” Ms MacFadyen said.
Health PEI now supports a federal strategy to improve identification, prevention and treatment of tick-borne illnesses, but several Kings County residents who are already sick were unable to receive diagnosis or treatment here.
Four individuals, all from the same area in and around White Sands, paid for medical testing in British Columbia and Maine to confirm they have Lyme disease or associated viral and bacterial infections. Each had endured months or even years of illness and tests that failed to determine a cause.
Without a diagnosis for Lyme, they were denied effective treatment for the curable illness. All the while, the viruses and bacteria hiding in their bodies were gaining strength, jeopardizing their health, their finances and basically their quality of life.
The effectiveness of the Elisa test has been questioned by CanLyme, and its weakness as a reliable detector of the bacterium causing Lyme disease is noted in the Federal Action Plan on Lyme disease (https://www.canada.ca/en/public-health/services/publications/diseases-conditions/lyme-disease-canada-federal-framework.html)
The test indicates the presence of antibodies in human blood samples. Testing performed before a patient’s body has produced antibodies, or after the bacteria have camouflaged themselves from the patient’s immune system, often result in false negative results.
Lyme is curable, especially in early stages before tissue and organ damage occurs, with antibiotic use lasting beyond the usual course of 21 days. To prevent either bacterium or a patient from developing antibiotic resistance, several different antibiotics are administered in sequence. The end date for treatment comes with a cure but few Island doctors are willing to prescribe months of antibiotic treatment.
Ms MacFadyen questions provincial medical guidelines which discourage long-term antibiotic use for tick-borne illness, especially when it is permitted for other conditions.
The Canadian Dermatology Association recommends oral antibiotics, the same ones used to treat Lyme disease, “for moderate to severe acne of the chest, back and shoulders,” with the disclaimer: “Treatment should be restricted to a few months to prevent antibiotic resistance developing.”
“The legislation needs to change,” Ms MacFadyen said.
She said it’s fortunate some of the people in her area have been diagnosed and are now receiving treatment. However, the associated costs and physical hardship of having to travel when they are so sick point to the need for the same supports here.
“Health PEI is putting people into financial hardship.
“These are people who are so sick, they would do anything to get better,” Ms MacFadyen said.
Couple travels to BC for diagnosis
Amanda Millar, who lives a short distance from the MacFadyens, was diagnosed with Lyme last year after travelling to a clinic in British Columbia. She received further testing, proving her to be positive for the Lyme bacterium, and immediately began treatment. The travelling was a nightmare for the wife and mother of two young children. She had been forced to give up commercial fishing with her husband Jeremy and was so sick her son thought she was dying. The couple has paid for her diagnosis and continuing treatment from their own pocket. A year later she still requires antibiotics and while she isn’t cured yet her health is improving.
“Some days are good and some days are not good,” she said.
Years of painful struggle
Savannah Belsher-MacLean grew up in neighbouring Guernsey Cove. She enlisted the services of Dr Richard Dubocq, a ‘Lyme literate’ medical doctor in Maine in October to determine the cause of health issues plaguing her since she was about 10-years old.
Today, having received a confirmed diagnosis of Lyme disease, she suspects 20 years of tests for irritable bowel, digestion disorders, reproductive and muscular disorders can be traced back to a bite from an infected tick. It was a time when most Islanders believed the absence of deer in PEI equated with the absence of deer ticks, considered the most likely to transmit Lyme disease. The young woman did not even suspect ticks could be at the root of her medical issues.
“I don’t remember a tick bite. I never had the bullseye rash. The doctor has been tracking deterioration of my health since I was 11.
“The last 15 years have been a constant struggle with health issues. The past three years have been really hard.”
Last year Ms Belsher-MacLean got aggressive about finding a cause so she could hope for a cure, enduring an endoscopy and routine exams “for everything.”
Every test came back clear but rather than relief, each failure to produce a diagnosis drove her to tears.
Then she randomly came across an article about Ms Millar and another woman formerly from the area, Heather Hume. She knew Amanda and after talking to her she too decided to seek help off Island.
Dr Dubocq pieced her 20-year medical history together.
“I’m not that old and I really felt as though I was dying. I was rapidly getting worse and started to have some vision loss, joint pain and memory loss. Anxiety was a product of not knowing what was going on with my body. Once I talked to Dr Dubocq I felt very vindicated and validated.”
Ms Belsher-MacLean has been on medications prescribed by Dr Dubocq since October 1. She built her body up through diet and probiotics to prepare for the antibiotics, which were introduced one at a time to determine if she was allergic to any of them. She knows the cure will be slow and difficult.
“It takes over every aspect of your life. You have to have more rest and less stress. You can’t work.”
She has had some help from her local Lions Club, which contributed to gas and bridge fees.
“If I have to invest into my health that’s what I’ll do but I really would have preferred to have learned about this a long time ago.”
To anyone facing Lyme disease Ms Belsher-MacLean advises learning all they can about it and becoming determined self-advocates until someone listens and to reach out for support from others who have it.
“I feel really angry it took this long but I understand. There’s nothing uncomplicated with Lyme. Five patients can have five different sets of symptoms from the same illness. It all has to be linked together some way. It should have been puzzle pieced a long time ago.”