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Lyme disease: as cases rise, author details prevention, diagnosis and treatment

Cases of Lyme disease have grown exponentially in Ontario in the last decade, especially in the Kingston and Thousand Islands region. In 2010, only 88 cases were reported in all of Ontario, but that increased to 1159 reported cases in 2019 (the last year for which data is available), with 285 of those cases reported to KFL&A Public Health.

According to Brian Owens, author of the new book Lyme Disease in Canada: The tick-borne epidemic you need to know about now!, Lyme disease has only been recognized in Canada for the last 20 to 30 years. “There were sporadic cases in Canada for that time, but certainly in the last 20 years or so, it’s become much more established. And so, part of what’s driving that is climate change. Basically, the suitable habitat for the ticks that carry the disease has been expanding, and the ticks are moving north by about 30 kilometres per year,” he explained.

Brian Owen’s book was published by Formac Publishing Company Limited. Submitted image.

Blacklegged ticks, also known as deer ticks, can carry a bacteria called Borrelia burgdorferi, which causes Lyme disease infection in humans and other animals they bite. They live in woodlands, tall grasses and bushes, and are found throughout Ontario. Climate change and increased land use have contributed to the northern spread of the ticks.

Simply speaking, he explained, “They [ticks] need to get transported, through rides on birds or dogs or whatever and dropped off in new areas where they can survive the winter. They can create new endemic populations and that’s more or less what’s been happening. It’s really more complicated than that, but climate change is certainly one of the big drivers.”

The warmer and longer springs, summers, and autumns in previously-colder northern climates allow the ticks to reproduce more quickly, according to Owens. Migratory birds and other animals bring the ticks north from warmer areas in North America.

Not every tick bite results in Lyme, but when a person is bitten by an infected tick it is important to seek treatment as soon as possible. This is problematic when new populations take hold in areas that haven’t had the disease before, Owens said, because, ”when it goes into new areas where doctors aren’t used to seeing it, they don’t necessarily think of it when someone presents with these symptoms that can be pretty general.”

A typical case of Lyme disease

The early symptoms of the disease can present much like the flu: fatigue, fever, headache, and muscle and joint pain. This can confuse doctors and patients, and cause delayed treatment.

This was the case last month when normally active 8-year-old, Markus Thompson of Enterprise, fell ill. “He complained of pain in his legs. He said he felt really dizzy, that the room was spinning and he didn’t want to get out of bed or eat anything,” said Markus’ mother, Krista.

“He slept night and day pretty much for four or five days,” added Mark, Markus’ dad. “And then we start noticing those rashes, those circle rashes with spots in the middle and took him to the hospital.”

Markus developed several large “bullseye” rashes on his back and chest at the sites of the bites. Photo submitted.

The rashes developed rapidly all over. “They were really good with him and knew right away what it was (Lyme disease) and prescribed him antibiotics at the hospital,” said Krista, thankfully.

Though the family never saw any ticks, which can be smaller than a poppy seed, Markus had been bitten multiple times by ticks that carried Borrelia burgdorferi, probably when they were visiting their camper trailer.

This is a good example of fast identification and treatment of Lyme disease, but unfortunately, it isn’t always that simple. The “bullseye rash” that is indicative of the disease doesn’t appear in all cases. Sometimes the rash presents without the bullseye pattern and sometimes it doesn’t appear at all.

Difficult to diagnose

Owens said sometimes a lack of experience with the disease on the part of doctors in areas where the disease is new can lead to problems getting a proper diagnosis. “If they haven’t seen a lot of it, even when they went to medical school, they may not even have learned anything about it because just wasn’t an issue,” he said.

“For a long time, the guidance from public health agencies kind of downplayed it,” he continued. “It was only in the last 20 years or so that a lot of the provinces started admitting that it was endemic. A lot of times they would only really consider it if you had travelled to an area where it was prevalent, you know, if you come from visiting the States or someplace that had it.”  

There are some psychological aspects to the misdiagnosis of Lyme Disease as well, Owens explained. “Some doctors don’t like having patients coming in with a Google search and saying ‘I think this is what I have,’ so they get a bit defensive to the point where they don’t really want to be told,” he said.

What Jennifer Hughes of Napanee thought was a mosquito bite reaction from August. Photo taken Sep 11, 2013. Submitted photo.

Jennifer Hughes from Napanee said this was a very frustrating part of getting her diagnosis. “I’m pretty sure that I was initially bitten by a tick in August of 2013. I never found the tick or anything; I just had a spot on my forearm that looked really similar to a mosquito bite. And it just kind of lingered there, it didn’t really do anything. But between August and October of 2013, I just became really, really tired. I was sleeping all the time, my body was sore as if I had the flu, but I didn’t have any other symptoms. I didn’t have a headache or anything. I was just really sore, but mostly tired — I could sleep like 20 hours a day,” she shared.

“The week before Thanksgiving weekend is when the rash started,” Hughes continued. “And then, thankfully, I actually worked at a hospital. So I just wandered down to our emergency department, showed them, and they told me they thought it was ringworm.” Unfortunately, the medication she was prescribed for ringworm “made it so much worse that, the next day, I went back to the emergency room and then they told me they thought it was impetigo. So, I was given prednisone and other drugs and creams.”

Suddenly, two months after Hughes noticed the bite, a rash took over her arm, neck and chest. Four different doctors misdiagnosed it, according to Hughes. Submitted photo.

In 2013, Lyme disease was much less prevalent in the region, but over the course of four different ER visits and one visit to a family doctor, Hughes finally met with Doctor Jeffery Sloan, who said, “You definitely have Lyme disease.” She was given proper medication and her symptoms went away quickly.

“I actually started crying when he told me what it was. He was very confident and genuine. It really made a difference because I thought I was going crazy,” Hughes said. “I really could never thank him enough for his compassion and answers.”

Unfortunately, the first inconveniences of misdiagnosis weren’t the last. Hughes developed the symptoms again about a year later. “I had a different family doctor then, and I went in with my photos and tried to explain this is exactly what happened last time, I’m feeling sick like I did last time, and it was like pulling teeth to try to get them to prescribe me the antibiotics again,” she said.

Hughes gave birth to a son in December 2020. “In the last week of my pregnancy, and after delivering him, my Lyme disease flared up again,” she told Kingstonist. “And again, it was really hard to get it diagnosed because they were thinking that it was a postpartum rash. Then they thought it was some type of infection because I had a C section.”

Luckily, her husband noticed that the rash was familiar, despite the fact that the rash was on her legs now and not her arm. “He said this rash looks really similar to the last time you had your Lyme disease. My family doctor prescribed me the antibiotic again and instantly again, within two days of taking it, it was cleared right up,” Hughes said.

Complicating this, as occurred with Hughes at the outset of her illness, the blood test for Lyme disease isn’t always reliable. Owens explained, “It looks for antibodies. It doesn’t tell you if you are currently infected, it doesn’t tell you how long you’ve been infected, it just says that you have antibodies to the bacteria. And then there’s a lot of discussion of whether it’s sensitive enough, whether it’s looking for the right things, and whether there are too many false negatives.”

“That was something that I wanted to get to the bottom of when I started writing the book… Yeah, forget it,” he quipped, noting it was just not possible.

Chronic Lyme

Further, Hughes said that she is very thankful that so far her recurring Lyme is mild compared to others who have had undiagnosed Lyme disease that becomes chronic. Symptoms of Lyme like fever, fatigue and joint pain can be accompanied by light sensitivity, numbness in the face, teeth or limbs, and gastrointestinal pain/disturbance.

Owens explained that more severe neurological symptoms associated with late-stage tick-borne infection can include dementia, seizure disorders, strokes, motor neuron disease similar to ALS, Guillain-Barre-like syndrome, a Multiple Sclerosis-like syndrome, and visual disturbances or loss. Emotional/Behavioral difficulties like depression, anxiety, rage, hallucinations and processing difficulties can also occur.  

While it is very important to get an early diagnosis, that often doesn’t happen. The disease presents like so many other illnesses that it can take a toll on frustrated patients who can’t get a proper diagnosis. 

“There is something going on with these people, whether it is that the bacteria is hiding from their system or, some people believe, it is more likely a sort of post-infection syndrome where you have cleared the bacteria but there’s still something going on with your body and we just don’t really know how to treat very well,” said Owens. “People with chronic Lyme disease will often try lots of different things because they are desperate. Naturopaths tend to have success because they are treated fairly holistically: I mean, you actually get to talk to them for like an hour or something instead of 15 minutes at your [physician] appointment. And even something like that can kind of just help with symptoms, if you feel like you’re being paid attention to and taken seriously. There’s a lot to be learned, I think, from that kind of treatment.”

Simple precautions

Brian Owens grew up in Kingston and now lives in New Brunswick. His book is an introduction to Lyme disease, focusing particularly on the situation in Canada. It looks at the conflicts that exist in recognizing, diagnosing, and treating Lyme disease, and the failed human vaccine. He tells the stories of the politicians and patient advocates who have worked to raise awareness of the disease in Canada, and covers the latest developments in science and medicine. Photo submitted.

Owens said it is important to know about the risks of Lyme Disease, but that we shouldn’t let it prevent us from enjoying normal activities. “You just need to take the right precautions. For decades, tick bites were not something that was on the list of things you were concerned about. If you were going out you’d bring bug spray for mosquitoes or sunscreen. As long as you take the right precautions: spray some bug spray around your ankles, tuck your pants into your socks, stay on the path, things like that. And then when you get home, do a check for ticks,” he suggested.

“If you know you’ve been bitten by a tick, that’s very important information to get across. You’re more likely to get a faster response from a doctor that way than if you’re going in saying ‘Oh, I’ve got all these general symptoms that I think might be Lyme disease.’ That’s when you end up taking a long time to get a real diagnosis,” he continued. “So, keeping an eye out for the symptoms and being aware that if you’ve been somewhere ticks are present is important.”

If you find a tick, he said, “Remove it quickly, as quickly as you can. When they initially bite you, it will take a little while, about 24 to 48 hours [for the bacteria to take hold]. So, it’s best to move quickly, and then you can get the tick tested through Public Health or your doctor.”

If you have been in a grassy or wooded area, there are ways to check for ticks. Carefully inspect all outer layers of clothing and gear for ticks. To kill any ticks found on clothing, you can put them in the dryer for 10-15 minutes, and the heat should kill them. Wash dirty clothes in hot water because cold or lukewarm water might not kill the ticks, Owens advised.

Owens also shared that Ticks are good hiders. They can be the size of a poppy seed, to begin with, and they travel up the body looking for warm humid nooks to hide. Make sure to check between joints (behind the knees, elbows, armpits), behind your ears and anywhere covered in hair. Taking a shower immediately after you return from outdoor activities is an easy way to wash off any unnoticed ticks, and a perfect time to do a tick check. Be sure to check your pets regularly, if they go outside.

Lyme Disease in Canada: The tick-borne epidemic you need to know about now! by Brian Owens is available at Indigo Books and online. He explained, “It goes through the history of the disease’s discovery in Connecticut in the 1970s, and further back into the evolutionary history of the bacteria that causes it. And then talks about some of the basic things like prevention, diagnosis and treatment, which has become somewhat controversial, and also talks about the kind of people who are the activists, the politicians, researchers and scientists who have been working on this to get it more into the public eye these last few years.”

For more information about Lyme Disease in KFL&A you can visit the KFL&A Public Health website.

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