For those suffering from Lyme disease, finding relief for a long list of symptoms can be a struggle.
More than 120 people, many suffering from Lyme disease, attended a public meeting on Thursday evening at Cascade Community Church to learn more about the disease from experts and activists.
When asked by presenters who at the meeting had Lyme disease, about 40 people raised their hands. Many more indicated that they were the friends or families of those affected.
Gwen Barlee, a Lyme disease activist, told the crowd that the number of Lyme cases is under-reported by Health Canada.
In 2011, Health Canada reported 258 cases of Lyme disease across the country. At that time, the Centre for Disease Control (CDC) in the United States reported 30,000 cases.
In August of this year, the CDC raised its predictions of yearly diagnoses from 30,000 to 300,000.
Barlee said that as the disease is borderless, the CDC’s new prediction means the numbers reported in Canada should be much higher.
Canadians still struggle to find treatment, and many head south to find proper care for their symptoms.
Lyme disease is controversial in the medical community, with some doctors believing it isn’t found in B.C. Doctors and their governing bodies cannot agree on appropriate treatment – or whether chronic Lyme, where symptoms last long after the initial infection – even exists.
Spread through tick bites, Lyme disease can cause symptoms ranging from flu-like feelings, chronic pain, respiratory issues, neurological and cognitive issues and more.
Patients say that false negatives are common in tests for Lyme disease, and a source of frustration for those looking for an explanation for their symptoms.
Barlee described Lyme disease as a “complex multi-stage, multi-system inflammatory disease,” that affects all parts of the body."
But even after she matched 54 of the 75 listed symptoms of Lyme disease, Barlee couldn’t get treatment. She was clinically diagnosed in the U.S. with a different test than used in Canada, but was “laughed out of the office” after going back to Canadian doctors with the results.
“Even though I had a clinical diagnosis, I couldn’t get treatment.”
Then she found Dr. Ernie Murakami.
Murakami spoke at the meeting, telling the crowd he had been forced into retirement following his extensive treatment of Lyme patients. Murakami, who is based in Hope, explained that the B.C. College of Physicians and Surgeons investigated how he was treating his patients and did not renew his medical licence, saying, “they thought I was an incompetent zealot” for believing in the prevalence of Lyme disease in B.C.
Doctors often treat those bitten by infected ticks with a two- to four-week course of antibiotics, but Murakami said a much longer treatment is needed – often a three-month treatment or longer.
Since then, Murakami has started the Dr. E. Murakami Centre for Lyme, where he continues to research and treat patients.
He also speaks at public meetings to help raise awareness about Lyme disease and help people find proper treatment.
Murakami said the provincial government and many physicians still fail to recognize the seriousness of the prob
lem, which he says will only get worse with time.
He said that numerous doctors “have their minds made up that there is no Lyme disease in B.C.”
Murakami helps to train “Lyme literate doctors,” but many must be careful about how they treat patients to avoid investigation.
For many Lyme disease sufferers, visiting a naturopath is a better option, as they can prescribe antibiotics but do not fall under the B.C. College of Physicians and Surgeons. However, much of that treatment doesn’t fall under health care coverage.
Many Lyme disease patients say they are bankrupted by their treatment after visiting American doctors or paying out-of-pocket for naturopathic treatment.
Murakami told the crowd that after his licence was not renewed, two former patients who could no longer get treatment took their own lives.
He said the depression some sufferers experience is not a symptom of Lyme disease, but stems from the continual strain of being told by doctors that they are not sick, and not having access to treatment.
Murakami and Barlee said it is important for those affected by Lyme disease to help raise awareness. Attendees were encouraged to write to their MLAs and MPs about the issue.
Elizabeth May, leader of the federal Green Party and MP for Saanich-Gulf Islands, has drafted a private member’s bill calling for a national Lyme disease strategy. Audience members were encouraged to ask their MPs to endorse the bill.
Barlee said those who know the suffering Lyme disease can cause must continue to push the government and the medical community to treat Lyme properly.
“We have to continue to apply pressure.”
