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MARY BETH PFEIFFER

Four decades after ticks sickened thousands and fomented controversy in the United States, Canada has a unique and precious opportunity.

It has the chance to get it right on Lyme disease. It can challenge the truisms that have shaped a diagnosis and treatment regimen that leaves many ill.

So far, Canada seems inclined to follow America’s dogmatic — and outdated — path.

Take the case of Sue Faber, a Burlington, Ont., mother and nurse whose belated Lyme diagnosis raised questions that no one in authority cared to answer.

Faber, it turned out, was infected not with the typical North American Lyme bug but an exotic European species. People travel to, and are bitten in, tick-riddled places, as a young Canadian girl was in 2007 in France.

But then Faber’s 11-year-old daughter also tested positive for the European species — without having travelled to Europe. The result suggested she was infected in utero, a phenomenon reported in many studies and that was briefly added last June to the World Health Organization’s updated list of diagnostic codes.

Faber’s story should have been a case study in the annals of Lyme disease literature. How was it that mother and daughter harboured a species of infection that was not even found in Canada?

But nothing was written in a medical journal — unlike the case of a European Lyme species found in ticks on seabirds in Newfoundland. That led to a 2006 science article and a 2014 warning that Lyme disease with “significantly divergent symptoms” might be coming.

The question of why seabirds draw notice when people do not is rooted in the certainty that medicine knows how to diagnose and treat Lyme disease.

“Based on the information reported for you and your daughter, the cases do not meet surveillance case definition,” the Halton Region Public Health Department wrote Faber in January of 2017. Although the tests were positive, “(t)hey cannot be counted.”

In seven years of investigating the landscape of Lyme disease, I have met many patients who faced resistant doctors, failed tests and indifferent bureaucracies.

For these hurdles to accessing care, blame a small cadre of powerful American researchers and health officials, whose treatment guidelines shape Lyme care worldwide. Doctors who treat outside them have been investigated and the risks of their protocols exaggerated. Patients who reject the prevailing wisdom are derided or told they are anxious, depressed or suffering something else.

Sometimes this is true.

But clinging doggedly to a single, static view of Lyme disease ignores a wealth of emerging science. Multiple studies, for example, show the Lyme bug, a spirochete-like syphilis, survives supposedly curative antibiotics, while it alters human and rodent immune defences. A review of 78 studies concluded tests fail, leaving people sick. And it is widely accepted that many patients remain ill, including those treated early.

In 2017, the Canadian government issued a “framework” to address Lyme disease. A petition by patient advocates, contending the plan was weak and underfunded, has garnered 80,000 signatures, but its influence is uncertain. Lyme disease patients today are forging the path of 1980s AIDS activists. They should be heard.

In November, a major scientific paper, by four researchers from the Public Health Agency of Canada, assessed the science of congenital Lyme disease. Among 59 pregnancies of infected women, 36 “adverse outcomes” were reported: 10 miscarriages, 10 deaths and 16 complications. Nine other pregnancy studies found five times the rate of complications in infected women who weren’t treated, as in treated women. As in much of science, however, other studies failed to link infection to fetal and infant harm.

When the World Health Organization dropped the congenital Lyme diagnosis, the Public Health Agency of Canada went along, citing “the need for further research.” Yet such research gets precious little funding.

In the meantime, obstetricians will be less likely to look for Lyme disease in pregnant women. More babies may be born infected, in particular with research suggesting vastly undercounted cases in Canada. This failure to meet a looming threat is the past of Lyme disease. It should not be the future.

Mary Beth Pfeiffer, an investigative journalist from New York State, is author of Lyme: The First Epidemic of Climate Change.