Marnie Freeman is advocating for systemic change in the Canadian medical system, which she believes is failing on the Lyme disease front.
“They’re [medical doctors in Canada] not even looking for it,” said Freeman, who was diagnosed with Lyme disease in 2019 after a 10-year fight against a litany of physical-and-mental-health symptoms.
“That’s the crime. Lyme disease mimics more than 300 different illnesses. Doctors are not ruling it out in Canada before they’re giving their patients a diagnosis. That’s a crime. It’s seriously messed up.”
The disease is caused by bacteria called Borrelia and is spread by bites from infected ticks. Early diagnosis and antibiotic treatment are important because Lyme disease can lead to serious complications if left untreated, according to the B.C. Centre for Disease Control (BCCDC).
Freeman does not blame doctors, but points the finger at Infectious Disease Society of America guidelines that, if not followed by Canadian doctors, could lead to harsh criticism and negative impact on their careers.
She highlighted the case of Dr. Ernie Murakami, whose particular approach to treating Lyme disease sparked an investigation by the College of Physicians and Surgeons of B.C.
Murakami was called a zealot, according to documents from the investigation, and was encouraged to retire. He retired early in 2008, noting the scrutiny was affecting his health.
“I was consequently forced to send about 200 patients across the border to California and Washington, some to New York and some to Europe,” Murakami told CBC News.
“There are two factions in the medical world. Some [doctors] believe only a very short term of treatment — 30 days — is all you need. … Yet there’s another group that feels many cases require longer periods of time. That’s what I believe, and I have evidence for that.”
Dr. Ralph Hawkins of Calgary is among the few medical doctors in Canada who is openly diagnosing and treating chronic Lyme disease outside of Infectious Disease Society of America guidelines, although he prefers to call the disease Borellia exposure neurocognative disorder.
“You can’t get in to see him,” Freeman said.
“We have people in our community that know they were bitten by a tick and our doctors still will not recognize their symptoms could be caused by Lyme disease.”
Lyme disease is the most common tick-borne disease in B.C. and North America, but unlike in Eastern Canada, the rate of the disease has remained low in B.C., according to the BCCDC.
“We know, based on our research, that many people in our community are going misdiagnosed or undiagnosed because our doctors, our specialists and our infectious disease experts are not willing or able to rule out Lyme disease before they settle on another diagnosis,” Freeman said.
“They believe Lyme disease is not endemic in our region. That’s because people like me, the vast majority of us, we don’t count because we got tested out of country to get our diagnosis.”
In May 2019, Dr. Eleni Galanis, a physician-epidemiologist with the BCCDC, told KTW it’s hard to answer whether Lyme disease is prevalent in Kamloops.
“The ticks that carry Lyme do exist in the Kamloops area, but over 20 years of testing ticks that are submitted by doctors and through field studies where we’ve gone out to collect ticks we have never found a positive tick in the Kamloops area for the bacteria that carries Lyme,” she said at the time.
Galanis said one field trip in the Kamloops area revealed a mouse that tested positive for Lyme, so the BCCDC does believe it is present.
Galanis said the BCCDC tests about 1,000 ticks every year from doctors, vets or through field research.
“It is still possible that people have Lyme disease even if they live in areas where Lyme is rarely seen in ticks,” Galanis said, noting people could be acquiring it while travelling or locally — the latter being what she called rare cases. But, rare or not, Galanis said tick bites should be taken seriously and care sought.
The most recent year of BCCDC statistics, 2018, show eight confirmed cases of Lyme disease in the province, including two in Interior Health, one of which was in the Thompson-Cariboo-Shuswap area.
Maggie Doucette is also among the Lyme disease community in Kamloops, diagnosed in 2020 after nearly seven years of pain, chronic fatigue and general malaise.
“When I mentioned Lyme disease in 2016 to my general practitioner, his response was, ‘Nope, that’s not a thing here in B.C. and especially not in Kamloops.’” she said.
“The fact my general practitioner was extremely dismissive to the idea and didn’t care to do some research was ridiculous. It could have been caught a lot earlier. I’m turning 26 this year. I kind of lost the first half of my 20s.“
Doucette said she was diagnosed last July by a Lyme-literate naturopathic doctor in Salmon Arm. By September, the treatment — which includes biophoton light therapy, exercise and essential oils — had her feeling the best she had felt in seven years, she said.
“I had seen every kind of specialist, you name it, in the Canadian medical system and nobody could figure anything out and nobody cared to dig deep into the things I was experiencing,” Doucette said.
Lyme disease is easier to diagnose if a large bull’s-eye rash appears a few days after the tick bite, but rashes show up in about 70 per cent to 80 per cent of cases, according to the BCCDC.
Neither Freeman nor Doucette recall having a rash.
Freeman suspects she was bitten while trail running in Kamloops in 2008, as that is when symptoms first showed and she did not travel that year. Doucette’s best guess is she was infected while hiking in the Kamloops grasslands.
Freeman’s early symptoms included a metal taste in her mouth, iron deficiency, anemia and digestive issues that mimicked acid reflux. She was instructed to manage the problems through improving her diet. Balance issues and dizziness began to surface and her energy level plummeted.
Later, Freeman had discomfort with her gums, but dentists could find no problem. Freeman thought eyesight issues could be leading to vertigo and leaving her off-balance, but optometrists could not confirm her theory. Then came another terrible taste in her mouth, separate from the earlier metal taste, one that lasted for more than two years. Freeman also began to experience numbness and tingling in her face, hands, lower arms, feet and lower legs.
The mental-health symptoms were harder to live with, she said. They included depression and anxiety that she could not get under control.
“I’ve since found out they’re symptoms of the disease,” Freeman said. “It didn’t matter that I was taking an active approach in my health, in general, and that I was exercising regularly and ate well and lived a balance lifestyle with sleep.”
In the last two years before her Lyme diagnosis, Freeman could not fall into deep sleep, never seeming to escape her anxious state.
Multiple sclerosis was ruled out by a brain MRI.
“But I did have white matter lesions on my brain, which since I have found out are from Lyme disease,” she said.
In the final year before diagnosis, Freeman, who had passed through menopause, tried bio-identical hormone replacement therapy. She was also diagnosed with an autoimmune condition called Hashimoto’s disease.
Freeman said her naturopath was not trained to diagnose Lyme disease.
“If you’re not trained to look for it, it’s certainly not in your toolbox of diagnoses,” she said. “It just got missed completely.”
Freeman found a Lyme-literate naturopath who sent a blood test to Germany to confirm her Lyme disease diagnosis.
“The Canadian lab test is outdated and doesn’t work because we have immune systems that are no longer functioning,” Freeman said, noting she is fighting two other co-infections. “It gives a false negative because it’s looking for antibodies and our bodies are no longer producing antibodies.”
Treatment for Freeman included long-term pulsing of antibiotics, herbal tinctures, supplements, probiotics and diet restrictions.
“When someone has Lyme disease for as long as I have, the best I can hope for is remission,” Freeman said. “If I get to 80 per cent of heath, I’ll be happy. I’m at least able to work and I’m sleeping again for the first time in a long time. My body has come back into a more normal balance. I have more energy. But I still have really hard days and am still actively treating the disease with herbals.”
• The fourth annual Kamloops Lyme Disease Awareness Walk is scheduled to be held virtually on Saturday, May 1.
Participants are asked to wear green, go for a walk in their own neighbourhood and take selfies that can be posted on the walk’s Facebook or Instagram pages, or emailed to kamloopslyme.ca.
Those who submit photos will be eligible for prizes from Bliss Float Centre, Real Deals, Wild Birds Unlimited Kamloops and Kamloops Hyperbaric Oxygen Therapy.