Lyme disease has arrived. Why hasn’t a reliable treatment?

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

Like soldiers in an advancing front, blacklegged ticks are today marching across Canada armed chiefly, but not solely, with a pathogen that indiscriminately sickens and disables: Lyme disease.

In 1990, ticks that carried the infection were found only in Long Point in far southern Ontario. But hitched to birds and enabled by a warmer climate, these blood-sucking arachnids have found a new and rich frontier across vast tracts of the country. They are in Ontario’s provincial parks, in Quebec’s Montérégie region, where temperatures have risen 0.8 degrees Celsius since 1970, along Manitoba’s Lake of the Woods, and in many parts of Nova Scotia, New Brunswick and British Columbia.

Climate change did not cause this scourge but it is surely abetting it. In Canada, white-footed mice that infect baby ticks when they take their first blood meal are also moving north, further setting the stage for the disease to grow.

The upshot: Canada is well into an epidemic that has exploded in the United States since the disease emerged in a small coastal town in Connecticut in the late 1970s. Today, these ticks reside in half of the continental United States’ 3,000 counties, twice the number of two decades ago. Evidence suggests that “case numbers will increase rapidly in the coming years in Canada as I. scapularis” – the blacklegged tick – “invades the most heavily populated southern parts of Canada,” according to a 2015 article in the journal Applied and Environmental Microbiology.

Of paramount concern amid this invasion is that the standard treatment for Lyme disease used in Canada and other countries – a short course of antibiotics – leaves a significant share of patients ill for weeks, months and sometimes years. This treatment is based on care guidelines developed in the United States that new research suggests are flawed. Until the medical establishment stops denying a problem exists, more people will suffer.

In the United States, authorities estimate that reported Lyme disease cases – 36,000 in 2016 – are one-10th of the actual number. Canada’s official disease count, which grew nearly sevenfold from 144 in 2009 to 992 in 2016, is also likely far below the real number. In a recent visit to Nova Scotia, the hardest-hit province, I frequently encountered people in restaurants and shops who shared stories of Lyme disease, suggesting the disease is more common than the 326 cases reported in 2016.

At this crucial juncture, Canadians would do well to learn from the mistakes of the U.S. model of Lyme disease care, which has cost patients dearly in delayed diagnoses and inadequate treatments. Since 2000, when the first treatment guidelines were issued in the United States, Lyme disease has been framed as an infection that is straightforward to both diagnose and treat. It is not.

Science has repeatedly found that the standard Lyme test fails to diagnose many infections – especially early in the disease, but later as well – leading to illness that is more difficult to treat. Moreover, some 10 per cent to 20 per cent of treated patients go on to suffer what American medicine calls “posttreatment Lyme disease syndrome,” a condition called “severe” in a recent Johns Hopkins University study. Symptoms may include muscle, bone and joint pain, memory and sleep disorders, fatigue, depression and neurological problems including numbness and tingling in hands and feet.

Beyond its early rash and flu-like symptoms, Lyme disease has also been linked to problems of balance, sight and cognition, facial palsy, meningitis, arthritic symptoms and, when the pathogen invades heart tissue, Lyme carditis.

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In Canada, Britain, the Netherlands, Sweden, Germany and many other countries with Lyme disease, the U.S. guidelines have set the standard for – have essentially dictated – management of this epidemic. Yet, at least 20 scientific publications since 2012 have reported that the way Lyme disease is treated, with 10 to 28 days of antibiotics, may not be working. The pathogen survived in infected monkeys and mice and in test tubes when exposed to an array of antibiotics used in people.

Mainstream medicine has been slow to acknowledge and accept these new findings, clinging to dogma that a bottle of antibiotics cures. Extended antibiotic courses don’t always resolve advanced cases of Lyme disease. The problem is that medicine rejects the notion that Lyme lingers, so has done little to find treatments that work.

In research for a book on the global spread of ticks, I met patients who travelled across oceans and borders in search of care for intractable Lyme disease. I spoke to a woman from Thunder Bay, Ont., who drove 14 hours to bring her son to a doctor in New York State. Others included a British man who flew to California, a young Swedish woman who went to England and a Dutch woman who went to Belgium.

These are the patients whose tests failed to diagnose them; who did not get or see the variable reddish rash that signals infection; or who were inadequately treated. To be sure, a significant share of early treated patients recover. These are the patients around whom the dogma of Lyme treatment has been fashioned.

But thousands of other patients in hundreds of Lyme disease support groups around the world are testament to the failure of a faulty model of care. Canada should listen to them.

Medicine does not have a handle on this epidemic. What is controlling it now, to a far greater extent, are the environmental forces wrought by human influence over the planet.

As temperatures rise, ticks have moved poleward – into Scandinavia, Russia, China, even Siberia and Australia. There and here, they lurk where children play and outdoor laborers work and hikers brush against the edges of trails.

Until we know better how to diagnose and cure, we must do battle with ticks. Be vigilant to check our children after spending time outdoors; avoid tall grasses and leaf litter, and even consider chemical repellents and clothing treatments. We must recognize our role in enabling an eight-legged menace and a single-celled pathogen that for eons existed quietly in nature but that today wreak havoc for many.

Source: https://www.theglobeandmail.com

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