It’s summer in North America and that means more people are outside enjoying the great outdoors. But, for some, simply heading out for a summer hike could make them sick.
There’s an increasing number of people across North America and around the world contracting Lyme disease. Lyme used to be considered an isolated disease found in North America and parts of Europe but it’s now found in 80 countries worldwide.
Its rise in North America has been particularly alarming. In the U.S. alone, the Centers for Disease Control says there are some 30,000 cases a year, but the CDC concedes the number is likely significantly higher than that. The Lyme Disease Association estimates the number is closer to a staggering 400,000 a year.
Some experts are sounding the alarm, calling it a pandemic.
“There are many countries around the world that are struggling with Lyme disease. It is a pandemic… There’s little doubt about that because it is so widely spread,” said Mary Beth Pfeiffer, an award-winning investigative journalist from upstate New York.
Pfeiffer began investigating Lyme disease when so many people in her community began getting sick and her initial research for the Poughkeepsie Journal eventually turned into a book, Lyme: The first Epidemic of Climate Change.
Health effects of Lyme
Lyme disease is caused by a bacteria called Borrelia burgdorferi that the tick contracts from hosts like deer or rodents. It’s then passed on to humans after a walk in tall grass or a hike in the wilderness.
“The bacteria is called a spirochete because of its spiral shape, and that gives it a great amount of motility so it’s able to move around in your system and throughout your tissue quite readily,” said Jim Wilson, the founder of the Canadian Lyme Disease Foundation (CanLyme).
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The good news is that if a tick bite is caught early, within the first few hours or weeks, a course of antibiotics can pretty much eliminate the disease. But if it isn’t, that spirochete can wreak havoc on the body.
“Once you miss the opportunity to treat it acutely, the bacteria can disseminate from the site of tick bite,” said Dr. Kieran Moore, the principal investigator with the Canadian Institute of Health Research-funded Canadian Lyme Disease Research Network.
“It can be spread to your joints and cause rheumatological Lyme or it can spread into nerve tissue and cause nerve tissue damage, or it can attach to the muscle of the heart and the nerve conduction system of the heart and cause all types of different cardiac presentations.”
Unfortunately, many cases of Lyme aren’t caught early enough and patients continue to deteriorate without knowing why.
“I just kept deteriorating with really weird heart palpitations and cognitive issues like unable to concentrate, slurred speech, trouble swallowing, light sensitivity, sound sensitivity and just a rapid deterioration to the point where I had to come home from work,” said Barry Philpott, a Lyme disease patient.
Why it’s so hard to get treatment
Philpott isn’t the only patient who describes a decline in health without any explanation before finally getting a Lyme disease diagnosis. It’s virtually never the first thing a doctor looks for and Moore says that’s part of the problem.
“We need significant work to educate physicians both in the front lines — emergency medicine and primary care — as well as our specialist colleagues regarding the myriad of signs and symptoms that Lyme disease can present as,” said Moore.
The other issue: there is still no completely reliable test for Lyme.
“We know that the current diagnostic tests for Lyme disease are insensitive,” said Moore.
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These diagnostic tests are particularly insensitive in the early stages of the disease, which means people could be going undiagnosed or misdiagnosed, leaving them vulnerable. Physicians and advocates for patients say this is the time to be especially vigilant.
“If someone presents in June, July or August just with undifferentiated fever, chills, muscle aches, headaches, neck stiffness… think Lyme disease,” said Moore.
Lyme and why it isn’t going away
Lyme isn’t going away. If anything, it’s getting worse.
“It has spread very quickly from the early ’80s onwards and we think that’s associated with climate change,” said Moore.
Pfeiffer, the investigative journalist, agrees.
“There are a number of things that are driving this epidemic and climate is one of the prime ones,” Pfeiffer said. “We’re certainly seeing that it’s warmer and it’s more humid in many places, especially in Canada, in the U.S., in the northeast and the midwest England.”
In her research, Pfeiffer also found a general lack of alarm over the disease, which she says is part of the reason Lyme has gone under-diagnosed and under-treated, especially in North America.
“We don’t have a handle and we need to do the work that we haven’t done,” she said. “I often compare Lyme disease to AIDS. The AIDS virus was identified in 1983. The Lyme disease bacterium was identified in 1981.
“The number of clinical trials that have been done for AIDS number about 11,000. You look at clinical trials for Lyme disease, there’s about 60. When I looked up those numbers it amazed me. Sixty trials for Lyme disease, 11,000 for AIDS.
“I’m not saying that AIDS did not deserve the attention it got, but Lyme disease is not getting the attention it deserves.”
Solutions to combating Lyme disease
Experts agree that it’s incumbent upon the medical community to start treating Lyme disease with more urgency. Since 2017 there has been a slight increase in funding for research in Canada. But other countries, including the U.S. are slower. Canada has also started educating physicians on recognizing signs and symptoms. However, it’s also important for people to educate themselves.
“Number one, educating people about the risk. Wherever you are going camping this year you should know, are ticks present and is the agent that causes Lyme disease present in those ticks, and you should be taking the appropriate precautions,” Dr. Moore said.
“Wear light-coloured clothing so you can see the ticks if they drop off the leaves or grasses and fall on to you. Use a repellant like DEET or Picaridin to repel the ticks off your clothing or skin.”
The message: until there is more research and more treatment available, prevention is the best medicine.
— With files from Ely Bahhadi
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