Shayna Dwor still remembers with horror when an infectious diseases doctor tore up her blood test results and told her that her illness was all in her head.
It was a seminal moment in her long and vexing quest for relief from debilitating symptoms that she believes are caused by Lyme disease.
The Concordia University design student believes she was bitten by a tick at Christmas 2011, while she was visiting her family in Niagara, Ont. In 2013, after experiencing unexplained symptoms like fatigue, joint and muscle pain, headaches and anxiety, she tested negative for Lyme disease. However, in 2014, she sent her blood to a California clinic, which confirmed she had the disease, she says.
Dwor, 23, is among thousands of people across the country who say they face an uphill battle when it comes to diagnosing and treating Lyme disease, the fastest growing infectious disease in Canada, with an incidence that is expected to explode by the end of decade. Public health officials say there could be 10,000 to 15,000 cases a year by 2020 thanks to climate change, dramatically up from more than 700 reported cases last year.
Many of those people were thrilled that Ottawa hosted a national conference last week that brought together government officials, medical practitioners and patients to begin establishing a federal framework on Lyme disease, focusing on ramped up surveillance, best practices, education and awareness as well as research.
Despite the good intentions offered up at the conference, it’s still not clear how quickly any changes to current protocols can be instituted, how easily doctors will adopt any new treatment protocols or how quickly relief will come for sufferers.
Lyme disease, which got its name when it was first diagnosed in Old Lyme, Conn., is caused by the bacterium Borrelia burgdorferi when transmitted by the bite of an infected tick. Only the deer tick, or black-legged tick, transmits the disease in Quebec, and most cases here have been contracted in the Eastern Townships and Montérégie.
However, infectious diseases expert Dr. Michael Libman of the McGill University Health Centre said there were a handful of cases from the West Island last summer and the number of on-island cases will likely grow this year as warming trends expand the tick population. Global warming is increasingly bringing the infected ticks into inhabited areas of Canada, he said.
One 2012 research paper predicted that more than 80 per cent of the population in eastern and central Canada could be living in areas at risk of Lyme disease by 2020 because of climate change.
Before 2013 in Quebec, most cases of Lyme disease originated outside the province, according to the Institut national de la santé publique du Québec (INSPQ), but last year 70 per cent of the cases seen here were acquired in the province.
“The risk of getting it in Quebec is very real,” said Dr. François Milord, a consulting physician for the INSPQ.
But it is a complex disease that has proven to be highly contentious as a growing lobby of people suffering from what they label chronic Lyme disease – the result of untreated Lyme disease, but a term that has not been sanctioned by doctors – has clashed with a sceptical medical community.
Still, advocacy groups have some political will on their side as the conference last week was prompted by a bill introduced by Green Party leader Elizabeth May, which notes that current guidelines in Canada “severely limit the diagnosis of acute Lyme disease and deny the existence of continuing infection, thus abandoning sick people with a treatable illness.”
Frustrated with what they claim is poor testing here, people suffering from this acute form of Lyme disease seek answers from private laboratories in the U.S., which they claim provide more accurate screening. Then they are discouraged when they are denied months of antibiotic treatment, which is not the accepted protocol in Canada or the U.S. but which they believe is the only effective remedy, despite recent medical studies which offer no evidence for that theory.
The reason there is a disconnect between the sufferers of chronic Lyme disease and the medical community, says Libman, a professor of medicine in the Division of Infectious Diseases at McGill and director of the J.D. MacLean Centre for Tropical Diseases, is that the scientific evidence for many of their claims about the illness simply isn’t there.
“The vast majority of people who have studied the science behind it believe the test is good,” Libman said in an interview. “It’s not perfect. But people who have a chronic infection will almost always have high levels of antibody that’s very easy to detect.”
He believes the people who claim to have chronic Lyme disease are usually suffering from something else. The headaches, fatigue and joint pain many complain of are common symptoms and medical science can’t always identify the cause. That often frustrates patients who demand answers.
Libman has also seen cases where the focus on Lyme has resulted in the true diagnosis being missed, as well as cases where the unnecessary use of antibiotics has resulted in serious side effects, including death.
“Generally speaking, we have tests that are good and reliable and we have treatments that are good and reliable and take care of the overwhelming majority of people who are infected,” Libman said. “If your symptoms go on for months and years and you get tested multiple times and there’s nothing typical about your symptoms and the tests all come back negative – then it’s probably not Lyme disease.”
Still, about 100 sufferers told heartbreaking stories at a public forum on the first night of the national conference, highlighting their similarly maddening battles to get diagnosed and treated.
Montrealer Marguerite Glazer was one of those who spoke, describing her 15-year battle with Lyme disease, which began when she was 19. She says there are 400 Quebecers in her Facebook group who all believe they have Lyme disease and tell of being “ridiculed and insulted” by doctors here.
“The present medical system in Canada is relying on outdated and flawed information, masqueraded as science, causing thousands undue suffering,” said Glazer, vice-president of the Quebec association for Lyme disease. She “felt toxic” for 12 years before her diagnosis and treatment for Lyme disease, she said.
Glazer couldn’t hold down a job and could barely get out of the house when she started a six-month therapy of antibiotics three years ago, which she says gave her her life back. Many sufferers say they have symptoms mimicking arthritis, MS or other chronic conditions.
Glazer said doctors who stray from the accepted protocols in Quebec are investigated by the Collège des médecins du Québec, but spokesperson Caroline Langis said investigations are kept confidential and can’t be confirmed. Jim Wilson, president of the Canadian Lyme Disease Foundation, said he knows of two doctors in Quebec who had to stop prescribing longer therapies recently because they faced sanctions, and that doctors across the country are targeted by their respective governing associations for treating Lyme disease aggressively.
The stories at the conference were “very compelling” and an indication “we need to do better,” said Canada’s chief public health officer, Dr. Gregory Taylor. “It makes you realize the difficult journey these patients have,” Milord said in an interview.
Taylor said there is willingness to improve the protocols for Lyme disease, and that clinicians have been encouraged for years not to base their decision to treat solely on laboratory results.
However, he said, all the scientific evidence about Lyme disease must be studied to decide if there’s a reason to modify the current protocols, which follow recommendations from the Infectious Diseases Society of America and the Centres for Disease Control and Prevention.
“There is controversy on diagnostics,” Taylor said. “The blood test we have is very difficult to interpret … There’s agreement we need better testing.”
Canada is way too dependent on “inaccurate testing,” said Wilson of the Lyme disease foundation. Our two-tier serologic testing system doesn’t test for enough strains, he said, which is why people seek screening at private U.S. labs.
Libman said the tests could be wrong for a “minuscule” percentage of people, although he agrees that the test isn’t that effective right after the infection. But he is worried that patients who go to private U.S. labs for testing, and then insist on longer antibiotic therapies based on those results, are being misled.
An article in the Canadian Medical Association Journal last November said that a negative control group of 40 patients without Lyme disease were included in a study on testing practices which showed false-positive results from three of the four private labs studied. One lab had false-positive results in 57 per cent of the samples in the negative control group, leading to the conclusion that this “dispels the myth” that U.S. specialty labs offer more accurate screening.
“Patients with chronic subjective symptoms without a diagnosis can be vulnerable and desperate for an answer as to the cause of their illness,” said the article. “Giving them a false diagnosis based on flawed testing is misleading.”
Equally controversial is the prescribed treatment. “That was a hot topic at the conference,” said Milord. “Everyone agreed we should do more studies on the usefulness of long-term therapies.” Patients insist they need months of antibiotics to combat the infection, but Taylor said the evidence around the effectiveness of that has been questioned.
Libman had stronger words. “The notion of just giving more and more antibiotics flies in the face of what we know about almost all infectious disease,” he said. “There can be post-infectious complications but the antibiotics aren’t going to help because the infection itself is no longer present.”
An article published in the New England Journal of Medicine in March concluded that, for patients with persistent symptoms attributed to Lyme disease, “longer-term antibiotic treatment did not have additional beneficial effects on health-related quality of life beyond those with shorter-term treatment.”
The U.S. National Institute of Allergy and Infectious Diseases says that in “patients who have non-specific symptoms after being treated for Lyme disease and who have no evidence of active infection (patients with post-treatment Lyme disease syndrome, or PTLDS), studies have shown that more antibiotic therapy is not helpful and can be dangerous.”
Dwor said that prolonged antibiotics didn’t seem to help her, which is why she is going to Germany next month.
With about $12,000 of the required funding raised, she has secured a loan for the rest. “I just want to feel my age again,” she said with a sorrowful sigh, as way of explanation for why a 23-year-old would go to such extremes to seek therapy for an illness most doctors tell her doesn’t exist or can’t be treated.
Saying it’s in her head, she reasoned, doesn’t explain why she wakes up after a 10-hour sleep feeling exhausted, or the agonizing inflammation that leaves her in pain 70 per cent of the time, or why the cartilage around her rib cage has depleted, forcing her to constantly go through the unpleasant exercise of popping her ribs into place.
Dwor says she struggles with symptoms every day.
“With all due respect to the health care offered in Canada, it has been, for me, a complete nightmare,” she said. “There is no treatment available in Canada other than 30 days of antibiotics, which has never been proven to cure the disease. Doctors are not trained or informed about the disease and patients suffer with misdiagnoses for years.”
Wilson says patients like Dwor are being “abused” by the current policies regarding Lyme disease and he is hopeful the conference last week will be a turning point in terms of improving protocols related to Lyme disease. Meanwhile, he estimates there are already 10,000 cases a year of Lyme disease in Canada.
So while Wilson is pleased the government is now open to at least examining the policies surrounding Lyme disease, it’s anybody’s guess as to how long it could take to effect meaningful change.
Glazer just hopes doctors will be open to the evidence brought forward by victims of Lyme disease.
“We are seen as gullible people drawn to a quacky diagnosis of chronic Lyme disease that we stumbled upon on the Internet,” she said. “Sadly, we are faced with doctors … showing savage disregard for our suffering.”
Taylor acknowledged that “untreated Lyme disease can cause severe symptoms” and that the government is trying to move as quickly as possible on establishing a new framework.
He promised that patients would be involved in the process moving forward. But modifications must require scientific evidence, he said.
The ins and outs of lyme disease in Quebec
Before 2010, there were fewer than 14 cases a year of Lyme disease reported in Quebec. There were 32 cases in 2011, 43 in 2012 and 144 in 2013.
The first reported cases were contracted outside of the province but in 2014 54 per cent of cases were acquired in Quebec, and last year it had increased to 70 per cent.
In 2014, the majority of cases acquired in Quebec (about 85 per cent) were contracted during outdoor activities in Montérégie. Tick populations are also found in the Eastern Townships and the southwestern region of Mauricie-et-Centre-du-Québec.
It is estimated that less than 20 per cent of the ticks here are infected with Lyme disease (the Borrelia burgdorferi bacterium). -The tick activity period begins in April and ends in late November.
Symptoms can include: Fatigue, fever or chills, headache, muscle and joint pain, numbness or tingling, swollen lymph nodes, skin rash, cognitive dysfunction or dizziness, nervous disorders, arthritis, heart palpitations.
Symptoms can appear three days to a month after infection.
It is not known how many people get what is considered the signature “bull’s eye” rash, often looking like a target, that may accompany the infection. But you can definitely be infected without getting a rash, or even any symptoms.
The risk of contracting Lyme disease is very low if the tick remains attached to the skin for less than 24 hours.
Prevention: In areas where the ticks are common, it is advised to wear long-sleeved shirts, tuck pants into socks and wear closed shoes. Conduct regular tick checks and remove any ticks that are found. Use insect repellent with 20 per cent DEET or higher on your skin and clothing. Stay on trails and try to avoid wooded, leafy areas.