Lyme disease research, funding falling behind in Canada

When I got sick in May 2016 with what I suspected was Lyme disease, I learned fast about tick-borne illnesses in Canada.

What I learned was that out-of-date lab tests mean many people may altogether miss a diagnosis of Lyme — an infectious disease spread through the bite of infected ticks that can produce symptoms ranging from fever to death.

They get sicker without treatment. The health-care system spends much more to treat them when they have a chronic illness.

Yes, Canadians need to avoid tick bites in the first place — we need to strengthen public education about ticks. However, doctors don't follow the health provider protocols that already exist.

The 2015 Manitoba Health protocol indicates that if a doctor thinks a person might have Lyme, the patient should be offered antibiotic treatment immediately, without waiting for a test to confirm it.

Instead, a doctor tested me twice for Lyme with ELISA, or an enzyme-linked immunosorbent assay — a blood test that is the sometimes-unreliable first part of the two-step Lyme test. I tested negative both times.

Over time, I saw four separate Manitoba doctors (a family doctor, two specialists, and an ER doctor) who didn't think my symptoms could be Lyme disease. I waited eight months to get a prescription for antibiotics.

Waiting for this disease to escalate can result in serious, irreversible damage.

Current Canadian tests not up-to-date

When I got too sick to wait longer, I sought help from a naturopath. In December 2016, I paid for an expensive but thorough Lyme test done by a U.S. lab. That lab test indicated I was positive for Lyme according to the U.S. Centers for Disease Control standards. A walk-in clinic doctor reviewed the lab results and prescribed antibiotics.

Yet, according to a third Canadian ELISA done over a year after I got sick — when I was finally seen by an infectious diseases specialist — my results were still negative.

How could I be positive on the U.S. lab tests and negative here?

According to the Canadian Lyme Disease Foundation website and experts I consulted, the current Canadian tests for Lyme don't test for multiple strains of the disease, nor do they test for co-infections. These tests evaluate whether one is positive for Lyme disease based on the disease strain found in the 1970s in Lyme, Conn.

These tests don't evaluate whether Canadians are sick with Lyme strains that are recently or consistently found in their local provinces.

Why aren't Manitoba doctors treating Lyme at the first suspicion of illness?  Doctors say they should prescribe fewer antibiotics so as to avoid antibiotic resistance. The first line of treatment for Lyme is doxycycline, an inexpensive antibiotic often prescribed for months to teenagers with acne.

Are pimples worth antibiotics, but not a progressive illness? This is a cheap, effective way of getting rid of infection before it becomes serious.

$4M for research, education from feds

If a doctor treats Lyme promptly, most people get better with three weeks of antibiotics. When no one treats the illness, it becomes chronic — as in my case. Doctors must prescribe longer antibiotic courses — sometimes requiring IV or even malarial drugs, for co-infections.

The good news is that the federal government just announced it will fund an additional $4 million dollars to support Lyme research and public education about tick-borne diseases. Is it too little, too late?

Lyme disease isn't new. Since it was first diagnosed in Connecticut in 1975, it's spread quickly. In the 40 years since, the ailment has been linked to the black-legged tick (also called the deer tick), which transmits the disease.

Flash forward to the late 1990s in North Carolina — Lyme disease was a "northern thing." The state public health authority didn't believe it was in North Carolina. Public health officials and insurance companies refused to pay for the unreliable diagnostic ELISA testing.

Around that time, a friend, who was a Duke University graduate student in biology, brought her dog, Gina — a large Bouvier — to the veterinarian because the dog was ill. The vet suspected Lyme disease. Gina tested positive and was treated.

Gina's owner suspected she had the same illness as her dog. She'd hiked in the woods often with Gina and pulled off many ticks. She asked the vet what to do. Her advice? See a doctor immediately.

That doctor wouldn't prescribe antibiotics. He believed "Lyme doesn't exist in North Carolina." On a second visit, that smart vet helped out. She provided Gina the dog two antibiotics prescriptions instead of one. Both grad student and Bouvier got well.

Climate change brings disease to Canada

For Canadians with Lyme, these stories sound familiar. Until recently, Lyme wasn't present in many parts of Canada. But with global warming, black-legged ticks and tick-borne illness came here.

In terms of public health policy we're now in the same place that North Carolina was 20 years ago.

More funding must go into both field research and lab work. The government should fund scientists to continue studying what tick-borne illnesses exist in Canada.

How? Scientists can catch rodents in traps, pull ticks off those rodents, and analyze data from those ticks. If Manitoban scientists know which Lyme strains and co-infections are present in ticks here, it's much easier for labs to create and run reliable diagnostic tests to detect those infections in humans.

Only a small amount of funding goes to this research area. None of it actually ends up benefiting medical diagnoses or patient health yet.

One biology professor's preliminary, pre-publication evaluation of the 2016 tick field season indicated that in some parts of Manitoba, over 60 per cent of the black-legged ticks tested positive for at least one of three known tick-borne diseases, including Lyme. (Individual ticks often have more than one infectious disease. One tick can transmit up to three infectious diseases to humans simultaneously.)

Funding just a drop in the bucket

Without a substantial and sustained funding increase on both a provincial and federal level, Lyme and tick-borne illness research in Canada won't keep pace with the diseases' encroachment into Canada due to climate change.

Will $4 million do the trick? Experts I've spoken with rolled their eyes, smiled and said "It's better than nothing."

Until federal and provincial governments implement up-to-date research, better physician education, and improved testing and treatment options, this funding is just a drop in the bucket. Lyme disease costs substantially more as the disease advances untreated, with expenses due to health care, disability and time off work.

Doctors and politicians: the ticks aren't going away. They're advancing north as our climate warms.

Let's pour resources into offering Canadians a research-based strategy to stay healthy — as we explore our amazing landscapes for the next 150 years.

This column is part of CBC's Opinion section. For more information about this section, please read this editor's blog and our FAQ.