Bruce Shilton’s crippling fatigue left him bedridden for six months. Sue Faber was so forgetful, she couldn’t remember her daughters’ birthdates. And Andrea Smith’s relentless aches sent her into a deep depression.
All three Canadians say they are struggling with a chronic form of Lyme disease and feel abandoned by Canada’s health-care system.
The challenge for them, and other patients with Lyme, is that the medical community is divided on how best to diagnose and treat this controversial disease.
On one side of this deep divide are mainstream doctors who say Lyme is easy to diagnose with standard testing, and the prevailing treatment — a short course of antibiotics — is enough to kill the bacteria that causes the disease. They believe patients who think they have chronic Lyme but have no evidence of infection are grappling with other illnesses and that treating for Lyme masks the real cause of their symptoms and does more harm than good.
On the other side are doctors who say this is an extremely complex disease. It is often called “The Great Imitator” because its symptoms mimic other diseases and can affect any part of the body, including the brain, heart and nervous system. They say the standard testing is flawed, resulting in missed cases and misdiagnosis, and if it’s not caught early the required treatment is longer antibiotic use.
In Canada, treatment is based on guidelines established in the United States. But several states have passed doctor-protection laws that allow physicians to treat Lyme more aggressively with longer-term antibiotics. Here, however, physicians typically refuse to treat chronic Lyme, or they do so quietly so that regulatory agencies don’t find out.
This leaves desperately ill patients with few options, which is especially troubling because research shows people with Lyme are at greater risk for suicide. They say they are met with outright disbelief from some doctors who refuse to treat it, and tell them to stop self-diagnosing with Dr. Google. With no relief for their debilitating symptoms from our health-care system, they go elsewhere — often to the U.S. — and pay big bucks for diagnosis and treatment.
It’s a polarizing issue at a time when warmer climate is facilitating the rapid spread of blacklegged ticks across Canada. Cases of Lyme disease, transmitted through the bite of an infected tick, are at record highs and expected to rise. Figures for 2018 aren’t yet available, but last year there were 2,025 confirmed and probable cases nationwide, up from 992 in 2016. By comparison, there were 144 cases in 2009. And health officials say the number affected is probably tenfold because the disease is underreported.
“Canada is a new frontier for Lyme disease,” says American investigative journalist Mary Beth Pfeiffer, the author of Lyme: The First Epidemic of Climate Change. “It is a disease that moves into an area, takes root and doesn’t leave.”
Ticks are a greater nuisance in the summer, when people are more likely to venture into brushy and wooded areas. But they’re still around in winter, hiding out in leafy litter.
“Be aware,” says entomologist Curtis Russell, a senior program specialist at Public Health Ontario. “If it’s above 0 C and there’s no snow, blacklegged ticks can still be out and active.”
Earlier this year, the Star wrote about the spike in Lyme cases and about a provincial report by the Lyme Disease and Tick-borne Illnesses Task Force. The task force was appointed by the Ministry of Health to identify ways to improve the health of those living with Lyme. It addressed how patients say the disease is going undetected, misdiagnosed and insufficiently treated. Among its key recommendations is the need to review current testing methods and treatment guidelines. That story drew close to 100 heart-wrenching messages from readers. People were too sick to work, forced into early retirement and had spent their savings on treatment. To better understand this issue, the Star spoke with people on both sides of the divide.
Bruce Shilton was cutting grass at the family cottage in the Muskoka Lakes when he suddenly felt unsteady and had to sit down.
“It was like this big cloud rolled in.”
He didn’t know it, but that cloud was the first hint of a storm brewing deep within him that would uproot his life.
It was 1998 and Shilton was 49. The father of three had always been active, coaching hockey, T-ball and soccer. But after that unusual episode, he came down with what felt like “the worst flu of my life.”
Around this time, he was appointed as a judge of the Ontario Court of Justice. It should have been a happy time in his life. But he was inexplicably growing weaker, grappling with fatigue, brain fog and headaches. At one point, he lost 20 pounds in two weeks. By 2000, he was actively searching for answers. He saw more than 25 specialists in Ontario — including infectious disease experts, neurologists, cardiologists, nephrologists, gastroenterologists, urologists and chronic fatigue specialists — and underwent a battery of tests.
One of those tests was for Lyme disease. It’s been around for thousands of years, but was first described in the mid-1970s, when Yale University scientists researched a mysterious outbreak of arthritis among adults and children in Lyme, Conn. A bacteria called Borrelia burgdorferi, transmitted through ticks, was the culprit. The ticks pick up the bacteria during blood meals, feeding on animals such as white-footed mice, deer and birds, then pass it on to humans. Ticks must be attached for 36 hours to transmit the bacteria to a human.
If Lyme is suspected early, a clinical diagnosis should be made based on whether the patient has a rash that sometimes resembles a bull’s-eye, flu-like symptoms, possible tick exposure and whether Lyme is endemic to the region. Antibiotics should be started immediately and this treatment usually results in a full recovery.
The only diagnostic test for Lyme recognized by Canadian, American and European public health authorities, is a two-tiered test. The first test is called an ELISA — enzyme-linked immunosorbent assay. If it’s positive, or indeterminate, then a Western Blot test is done. Both must be positive for a Lyme diagnosis. But because they test for antibodies — and antibodies take four to six weeks to develop in the body — they’re not good at picking up early infection.
Shilton didn’t remember a tick. But they are tiny — adults are the size of a sesame seed — and their bites are painless. And he didn’t remember a rash, but not everyone develops it. However, the wooded area around his cottage was ideal habitat for blacklegged ticks, which moved north from the U.S. into Canada, hitching rides on birds and deer, and are now thriving here. They were first spotted in the province in the 1990s in Long Point Provincial Park on Lake Erie, and now are found throughout most of southern and eastern Ontario.
Shilton wondered if the illness had gone undetected for years, spreading and hiding in different parts of the body, making treatment more challenging. But he tested negative. Medical experts were baffled. Shilton grew sicker.
Once a whip-smart lawyer — he was a prosecutor for 13 years and defence lawyer for 11 years — Shilton struggled as a judge, wrestling with fatigue and headaches. In 2004, he stepped down from the bench on a disability leave and couldn’t continue working so he retired. At one point, he was bedridden for six months because of fatigue.
“I couldn’t even walk to the mailbox at the end of my driveway,” he says. “It just totally overtook my life.”
In 2007, Shilton’s doctor sent his blood to a commercial lab in the U.S. This time, he tested positive.
But many in Canada’s medical community don’t accept results of foreign commercial labs because their validation data is not made public, says Tara Moriarty, an associate professor at the University of Toronto and a Lyme disease researcher.
“These companies have been found to return false-positive Lyme disease results for as many as 60 per cent of samples submitted from people who have never had Lyme disease,” says Moriarty. “(That means) at least half of the people diagnosed with Lyme disease do not actually have this infection.”
She admits there are limitations to the two-tiered test and that there are efforts underway in Canada to ensure we know the types of strains that are present. But she cautions against using for-profit commercial labs.
That’s echoed by Dr. Todd Hatchette, president of the Association of Medical Microbiology and Infectious Disease Canada (AMMI Canada), which represents physicians, clinical microbiologists and researchers specializing in medical microbiology and infectious diseases.
“I do feel for people who are suffering from chronic non-specific symptoms and looking for an answer,” says Hatchette, a medical microbiologist and infectious disease physician in Nova Scotia. “But assuming it’s Lyme disease based on nonstandardized testing and alternative methods is not necessarily the best thing for them, because it may prevent them from going on to getting diagnosed with something that can actually be treated.
“If the (two-tiered) tests are not positive, you should be looking for another cause,” he says.
But Vett Lloyd, a biology professor at Mount Allison University in New Brunswick, says most Lyme cases are missed with the standard test. She recently co-authored a study with Dr. Ralph Hawkins, a clinical associate professor at the University of Calgary. Using data from New Brunswick they found the two-tiered tests miss 90 per cent of real Lyme infections. In Ontario, she says about 80 per cent of cases are missed.
“That’s a lot of sick people who are getting negative test results who are being told it’s not Lyme disease, look elsewhere,” says Lloyd. “It’s expensive for the medical system and devastating for the health of those individuals.”
Lloyd says the two-tiered testing is dated and ineffective because it’s based on an older strain of the Lyme disease bacteria, which has evolved and mutated over the years.
Jyotsna Shah is president and CEO of IGeneX, a California commercial laboratory that is the leading alternative Lyme disease testing lab. She says the company’s methods are better at detecting infection than the two-tiered tests recommended by the Centers for Disease Control and Prevention. She says IGeneX looks for more strains of the bacteria, so if someone was bitten in another country it will get picked up because their tests look for bacteria and antibodies. And it covers the full spectrum of disease. It is better at detecting infection early on as well as in the later chronic stage of the disease, when a person may be too sick to make the antibodies the two-tiered tests look for.
“The two-tiered misses a lot of cases,” she said. “We probably (detect) most cases.”
“The tests we have developed so far are very sensitive and very specific,” she said, adding, “We follow the strictest guidelines and we make sure our tests are properly validated.”
Shah said “the false positive is not an issue with us.”
In the summer, New York State’s health department certified the company’s latest Lyme tests for use by physicians after a rigorous process.
Dr. Maureen McShane, who runs a practice in Plattsburgh, N.Y., specializing in Lyme and other tick-borne infections, such as Bartonella and Babesia, calls the two-tiered test a “setup for failure.” She uses IGeneX. But, she says, doctors shouldn’t rely on testing to begin treatment. They should make a clinical diagnosis, which is why “all Canadian doctors, and all U.S. doctors, should be familiar with symptoms of chronic Lyme disease.”
Unable to get treatment in Canada, Shilton saw McShane in New York. But he didn’t have the energy to travel there for regular treatment. In 2011, he started seeing a naturopath in the Toronto area, who’s treated him ever since. It’s been a “a roller-coaster ride,” he says, with periods of feeling good and bad.
“I’m not anywhere near normal,” says Shilton, 69, who lives in the Town of Whitchurch-Stouffville. “But I have some quality of life now, which I haven’t had in a long time.”
He goes to gym a few times week, occasionally plays golf, and last year went on a family vacation to Florida. And, he’s much more social, accepting invitations to dinners and small gatherings.
He calls Lyme “the million-dollar bite.” That’s how much it has cost him in lost salary and treatment costs, the latter amounting to $150,000.
“I’m fortunate,” he says, adding he can afford treatment. “There are many, many, many who aren’t and they suffer in silence, with disabilities and have zero quality of life.”
In August 2015, Sue Faber hit a breaking point.
For more than a dozen years she had seen an array of specialists for unexplained unusual symptoms — fatigue, forgetfulness, eye floaters, brain fog, a racing heart and a right foot that sometimes dragged. But every blood test, electrocardiogram, ultrasound, MRI and CT scan was negative.
Weeping she begged her doctor, “Is there anything, anything, anything you can think of?’ ” the 41-year-old nurse from Burlington asked.
Her doctor handed over a requisition form for blood work and for the first time requested the lab check for Lyme.
That proved fateful.
The first of the two-tier test, the ELISA, was positive, but the Western Blot was negative.
An infectious disease specialist suspected the ELISA test was a false positive. But Faber urged the doctor to run another Western Blot test, checking for European Lyme, since she had travelled there.
The test was positive.
Finally, a diagnosis. She had late-stage disseminated chronic Lyme disease, which meant the bacteria had spread throughout her body. She was started on daily intravenous antibiotic treatment.
“Within a few days, this brain cloud of fog started to lift,” she says. “It was unbelievable.”
But it didn’t last. When the treatment ended, Faber’s symptoms returned, along with new ones, including numbness in the tongue, tingling in the hands and a buzzing sensation in her legs.
Faber wanted back on the meds. But the specialist refused. That’s because mainstream doctors typically follow the prevailing treatment guidelines developed by the Infectious Diseases Society of America (IDSA), which have been adopted in various countries, including here, where they are promoted by AMMI Canada. They recommend short-term antibiotic use of up to four weeks, with a second course needed sometimes. That should be enough to kill the Lyme bug in most cases, although an estimated 10 to 20 per cent of patients remain ill with what’s called post-treatment Lyme disease syndrome.
However, other doctors follow the competing guidelines of the International Lyme and Associated Diseases Society (ILADS), which is a multidisciplinary medical society that says long-term antibiotics are needed to fight the infection.
“Because there is so much disagreement on that one fact, it has really stymied research and put patients in a position where they can’t get care,” says Pfeiffer, who began writing about Lyme in 2012 and is the only investigative reporter to cover this issue who hasn’t had Lyme disease.
In the U.S. — an estimated 30,000 cases of Lyme are reported annually, but the real number affected may be 300,000 — patient groups have been successful in getting several states to legislate protection for Lyme doctors, letting them determine treatment. Initially, some thought the new laws would have other doctors feeling more comfortable with treating Lyme, but it’s unclear if this has been the case.
“These laws are not fully protective and doctors are still very leery of treating Lyme disease,” says Pfeiffer, who knows of at least one doctor in New York who has been sanctioned. “There are far too few doctors who are willing to treat Lyme disease (in the U.S), other than the hastily diagnosed and hastily treated case.”
Lorraine Johnson, CEO of LymeDisease.org in the U.S., says “physician-protection laws do have the effect of providing a safety net for physicians who treat and that encourages them to follow their conscience.” But she added, Americans still experience a “severe access-to-care problem.”
“We have a problem in the United States, but Canada has that problem squared.”
In Ontario, New Democrat MPP Michael Mantha, a longtime advocate for Lyme patients and part of the provincial task force on Lyme, believes thousands of Canadians have sought treatment in the U.S., some spending hundreds of thousands of dollars. He also knows of people who have gone to Belgium, France and Germany.
He says that while doctors in Ontario do benefit from physician-protection laws, they are hamstrung by the prevailing guidelines. He’d like doctors to have more flexibility in choosing treatment guidelines, adding he’s in favour of anything that will benefit patients.
“Patients are suffering and Lyme disease is real,” says Mantha (Algoma-Manitoulin), who became passionate about the issue after hearing a heartbreaking story from a constituent whose daughter was denied treatment.
Professor Lloyd, of New Brunswick, has had Lyme disease and cancer.
“Both were terrifying,” says Lloyd. “But no one ever argued with me about whether I really had cancer. I was treated with compassion.”
By comparison, Canadian doctors didn’t believe she had Lyme and refused to treat her. They suggested she had Multiple Sclerosis and that she go into a nursing home for the rest of her life because her physical abilities were degenerating. Instead, she went to the U.S., was treated with long-term antibiotics and fully recovered. Lloyd doesn’t know if the bacteria is gone or dormant, capable of flaring up again.
Faber also headed to the U.S., where a doctor in Albany, N.Y., restarted her on antibiotics. Two years later, she’s still on them. To date, she has spent about $30,000 on testing, treatment and medical appointments.
“I’m functional and able to work again,” says the mother of three, who tears up when talking about the devastating toll of Lyme. At one point, she couldn’t remember the birthdates of her children.
AMMI Canada president Hatchette says long-term antibiotic use has never been proven effective and when administered intravenously can be risky, resulting in potentially fatal bloodstream infections.
“At least five randomized controlled trials have looked at prolonged therapy, after the traditional four weeks of therapy, and none of those people in the treatment group did any better than those who received the placebo,” he says.
So how does he explain patients who say they feel better after longer treatment?
“The natural history of (chronic illness) is it tends to wax and wane. It can get worse and it can get better. And we don’t know why,” he says. “There are also anti-inflammatory effects to antibiotics that have nothing to do with treating infection that might be helping an underlying inflammatory condition. And there’s also the placebo effect.”
Last year, a study by Tulane University researchers revealed some monkeys infected with Lyme and treated with the standard four weeks of antibiotics still had the bacteria in their organs up to a year later. And a couple of monkeys actually tested negative for Lyme, but researchers then found the Lyme bacteria in their heart and bladder. The study seems to support claims by patients that the standard testing isn’t always accurate and symptoms will linger after treatment.
Overall, it’s been tough for researchers to explore problems with standard treatments because they can’t get their projects funded or articles published in mainstream medical journals, says Pfeiffer. However, change is coming. More online medical journals are making it easier to get published and non-profit foundations, such as Global Lyme Alliance, have the money to pay for research, she says.
McShane, of Plattsburgh, has seen the benefits of long-term antibiotic treatment in herself and her patients, some of whom she has treated for up to five years. But, she adds, you won’t read about that in major medical journals.
McShane was bitten by a tick while gardening in 2002, and developed flu-like symptoms. Doctors couldn’t explain her deteriorating health, then one of her patients, with similar symptoms, told her he had been successfully treated by Dr. Richard Horowitz, a top Lyme physician in the U.S. Horowitz put McShane on antibiotics for two years, and she recovered.
“If I had not found Dr. Horowitz, I would be in a wheelchair by now,” McShane says. “I was falling, having speech problems, stuttering, choking on my own saliva, facial twitches, weakness, chest pains, shortness of breath.”
Her experience inspired her to open her own practice in 2009. Since then, she has treated around 3,000 people with both antibiotics and herbs. About 90 per cent of her patients are Canadian, 50 per cent of whom are “very angry” with the public health system in Canada and the doctors who refuse to treat them. Her patients include entire families — the reason for that is some research shows Lyme may be transmitted sexually and in utero, she says.
“We need to do long-term studies,” she said. “We’re talking about the health of our future generation.”
Similarly, Faber’s ordeal propelled her into advocacy work. Last year, she co-founded LymeHope, a not-for-profit that provides education to the public and medical community. She has since collected 2,700 letters written by Canadians with Lyme on their struggles with the health-care system and hand-delivered them to the federal health minister’s office. She has launched an online petition that has more than 82,000 signatures calling on government to recognize the seriousness of this disease and take action. And she was the driving force behind the Registered Nurses’ Association of Ontario passing a resolution to advocate, at all levels of government, for the integration of ILADS treatment guidelines.
“What we’ve been asking for all along is action that is grounded in identified needs by patients,” says Faber. “There are massive chasms, with patients on one side and doctors on the other. We have to bridge this gap.”
STAYING IN CANADA
In August 2017, Andrea Smith walked out of a Toronto clinic feeling like a doctor finally had the tools needed to help her.
“It was a huge relief,” says Smith, who had for years bounced among specialists, doctors, naturopaths, criss-crossing between Canada and the U.S. for treatment.
The 49-year-old, who runs a microbrewery on Manitoulin Island on Lake Huron, had finally found someone equipped to deal with Lyme, which she calls “a Pandora’s Box.”
It’s a box she first opened in 2009, while visiting a friend in B.C. She developed a round, expanding rash and felt like she had the flu. Back home, the symptoms worsened. There was muscle and joint pain, extreme fatigue, tingling, headaches, gastrointestinal pain, dizziness, brain fog and her body temperature was out of whack, leading to day and night sweats.
For Smith, who was active running half-marathons, the pain and discomfort became unbearable. She grew depressed and filled with despair.
Doctors didn’t know what was wrong with Smith. None ever asked about a rash, which is characteristic of Lyme, and she never thought it important to mention.
After a two-tiered test came back negative, blood work at IGeneX suggested Lyme. Her doctor gave her the standard antibiotic treatment but wasn’t able to do more.
Jim Wilson, president of the advocacy group Canadian Lyme Disease Foundation (CanLyme), says even though some patients benefit from long-term treatment, doctors won’t go against the prevailing IDSA guidelines because they’re “afraid” of being “policed” by the regulatory colleges, he says.
“We’ve had doctors tell patients, ‘I believe you do have Lyme disease, but I cannot treat you. I have children at home, I’m putting my kids through college, I can’t afford to lose my licence,’” says Wilson.
He says there’s been a chilling effect, with some physicians refusing to treat Lyme or doing so quietly because they don’t want a target on their back.
Bruce Shilton, the retired judge, had actually found two doctors in the Toronto area who would treat Lyme. But shortly after, they were both investigated by the College of Physicians and Surgeons of Ontario (CPSO), prompting one to give up his medical licence and the other to stop seeing Lyme patients altogether.
In Ontario, the CPSO says since 2011 there have been 10 Lyme-related investigations. Eight were launched after patients, or their families, complained doctors did not properly diagnose or treat their Lyme and did not take their concerns seriously. Two investigations were for doctors who treated Lyme.
In general, Wilson says, about 2 per cent of all Canadian doctors face some kind of investigation by their provincial medical colleges. But when it comes to Lyme disease, nearly all doctors known to diagnose and treat Lyme outside the prevailing guidelines have come under scrutiny.
Dr. Ben Boucher is one of them. He was questioned by the College of Physicians and Surgeons of Nova Scotia after two specialists complained that he interfered in the care of their patients. He maintains he just provided a second opinion, but says regulators threatened him with a competency assessment. So after 35 years he closed his Port Hawkesbury practice in 2013. Between 2006 and 2013, he estimates that he treated about 200 Canadians with long-term antibiotics who had travelled there to see him. When he closed his doors, there were about 100 Canadians on the wait list to see him for Lyme treatment.
The way he was treated served as a warning to other doctors, he says.
“It was a signal that you should be very careful treating Lyme and that you should follow their antiquated (IDSA) guidelines,” says Boucher.
When it comes to other infections that require antibiotics, such as pneumonia, acne or cellulitis, patients are treated until the condition improves. So, he questions, why isn’t it the same for Lyme?
Wilson and Boucher are part of an international group that has taken its concerns to the United Nations, alleging that Lyme patients are denied proper care and treatment, which is a human rights violation. And that medical and scientific experts trying to help patients access long-term antibiotics have become the targets of investigations and sanctions.
Mantha, the New Democrat MPP, knows of four Canadian doctors who were treating chronic Lyme here and moved their practices to the U.S. to avoid any hassles from the regulatory colleges.
“They just got frustrated with the system and picked up their practice and moved away,” he says. “They firmly believed people were suffering and went to a jurisdiction where they have the freedom and ability to treat people as they see fit.”
In Smith’s case, she couldn’t find a doctor who would treat her, so like many patients she turned to a naturopath and began herbal medication. But it didn’t help. The naturopath recommended more antibiotics, but Smith didn’t know a doctor who would prescribe them. Rather than go to B.C. — the only province where naturopaths can write prescriptions and where many patients travel for long-term antibiotic treatment — she went to Mount Kisco, N.Y., where a doctor treated her with several rounds of antibiotics.
A year later, many symptoms had improved, but not all of them. As she was unable to pay the costs of continuing treatment in the U.S., Smith’s naturopath had a new idea. She suggested a Toronto clinic that was taking patients with chronic Lyme and co-infections. There, doctors, naturopaths, osteopaths and nutritionists work together to treat the whole patient, not just the Lyme disease. Some services are covered by OHIP, such as doctor visits, but lab tests and medication are paid privately or through supplemental insurance.
Smith has been treated there since the summer of 2017 with a combination of herbal and antibiotic treatment. Blood work done there — testing is done in a Public Health Ontario lab — was negative for Lyme, but positive for Rocky Mountain Spotted Fever, another tick-borne disease.
Her doctor there, a family physician trained in emergency medicine, spoke with the Star on the condition that neither he nor the clinic be named. He says diagnosis needs to be a clinical decision, based on patient history. And while tests are helpful, they’re not definitive. He follows ILADS guidelines, and will prescribe long-term antibiotics, often more than one drug at a time.
“Many doctors and patients are uncomfortable with uncertainty, and unfortunately there is a lot of uncertainty with Lyme disease,” he says. “I will go through all the potential risks with long-term antibiotic therapy and if (patients) are in agreement we will go and start on a trial of therapy. And we monitor them closely and try to mitigate the risk as much as possible.”
To date, Smith has spent about $20,000 on treatment and drugs, in total. In the spring and summer, she was feeling better than she had in a long time, even getting her exercise bike and rowing machine out of the garage where they had been stored for years.
“I felt truly amazing, but some symptoms have slowly returned,” says Smith, whose health started declining in the fall. “It’s frustrating, but I remain optimistic ... This will get figured out.”
Isabel Teotonio is a Toronto-based reporter covering education. Follow her on Twitter: @Izzy74