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Canmore resident fighting Lyme disease for decade 'in remission'

“There were days I didn’t think I was going to wake up. I thought my life was done. I thought I was going to die,” said Candice J Bentley-Bergh, choking back tears.
Candice Bentley-Bergh, pictured in Canmore on March 18, has battled Lyme disease for about 10 years. JUNGMIN HAM RMO PHOTO

BOW VALLEY – A nasty tick bite in 2010 changed Candice Bentley-Bergh’s life as she suffered and struggled through pain and fear for more than a decade.

Soon after the tick bite near Nordegg, the Canmore resident became “tired of being tired” and started missing work because she could not stay awake, often sleeping 16 to 20 hours a day.

The mysterious illness seemingly began shutting down her body, leading to chronic fatigue that left her bedridden, debilitating pain, depression, partial face paralysis, mobility issues requiring use of a cane for five-and-a-half years, mental fog causing difficulty with memory and finding her words, and a host of other unexplained symptoms she couldn’t get answers for.

It wasn’t until seven years after being bitten for the first time by a tick in 2010 that she finally got diagnosed in July 2017 with Lyme disease, a tick-borne disease in North America that can cause serious long-term disability if left untreated.

Through years of struggles and suffering, Bentley-Bergh said she had to fight perceptions that Lyme disease-carrying ticks don’t live in Alberta, while one doctor in the initial stages of her illness told her that Lyme disease did not exist.

“There were days I didn’t think I was going to wake up. I thought my life was done. I thought I was going to die,” said Bentley-Bergh, choking back tears.

“I was so scared and I was so mentally exhausted of fighting … one doctor said Lyme doesn’t exist here, and I was just so mad but I told myself just breathe, breathe, breathe.”

As her symptoms became more varied and worse, Bentley-Bergh continued to test negative for Lyme disease in Canada, but blood samples sent to the United States and Germany for Lyme testing came back positive.

In Canada, the diagnosis of Lyme disease has been the subject of much debate. A lack of definitive blood tests and disagreement over the role of clinical diagnosis have held back progress toward consensus on effective medical treatment.

So when the Canadian healthcare system couldn’t help her, Bentley-Bergh finally decided to spend up to $60,000 out of her own pocket to get treatment in early 2020 at Klinik St. Georg in Bad Aibling, Germany, a centre that specializes in treating Lyme disease.

Known as hyperthermia treatment, infrared-A-irradiation is used gradually to increase the core body temperature to between 106.9 Fahrenheit and 107.2 F and held at that level for two to three hours. Patients are simultaneously treated with a combination of antibiotics.

“They basically cook you,” said Bentley-Bergh, noting the high temperatures actually increase the effectiveness of antibiotics and allow them to more easily penetrate cells.

“We don’t have this treatment in North America.”

The good news is Bentley-Bergh’s latest blood work in Germany following this treatment came back negative, which she said means she is essentially “in remission.”

She said she didn’t instantly feel better, noting it took time to recover and heal and to get her strength back.

“If I test negative again two years from now, in 2025, then it’s done,” she said.

Named after a cluster of cases were found in the Connecticut town of Lyme in the 1970s, Lyme is believed to have made its way to Canada in 1989. Lyme disease is caused by bacteria, viruses and parasites transmitted to humans from animals or insects.

The ticks mainly responsible for Lyme disease are the black-legged tick (Ixodes scapularis), historically found in southeastern and south-central regions of Canada, and western black-legged tick (Ixodes pacificus) in British Columbia.

Janet Sperling is an entomologist, tick researcher, and president of the Canadian Lyme Disease Foundation, and she recently gave a presentation on ticks and Lyme disease at a monthly meeting of the Bow Valley Naturalists in Banff.

Her research has shown that with cases now documented in every Canadian province, Lyme disease is emerging as a serious public health risk, suggesting physician education and better early diagnoses are needed to prevent long-term ramifications.

Sperling said an international perspective will be paramount for developing improved Canadian guidelines that recognize the complexity and diversity of Lyme.

“The more we know about ticks, the more we can learn to avoid them, and the more we can come up with inventive ways of preventing ourselves from getting the tick-borne diseases,” she said.

“Lyme disease is a really important disease that I think is only now getting the recognition that it needs.”

There are about 22 species of ticks in Alberta, but Sperling said new and different ticks are expanding their range across the country, both because of changes in how many and where people recreate as well as with climate change.

“We’ve got several things working to increase the number of tick encounters – new and different ticks are moving in and so that’s one of our big problems,” she said.

“Some of it is because of expanding the range, some of it is global climate change, and we’ve got more people going out into the backcountry and then encountering ticks.”

In addition, ticks can travel in and out of areas on people’s pets.

“For example, you might take your dog to Saskatchewan, your dog picks up a tick in Saskatchewan and you bring your dog back to Alberta, so we have ticks in Alberta that didn’t necessarily come from Alberta, but we’re finding them now in Alberta,” she said.

While some of the tick-borne diseases are changing and the ranges of ticks are expanding, Sperling said ticks are an increasingly important part of Canadian ecosystems and have significant effects on their hosts.

“They’re actually a part of our biodiversity. There’s a lot of negative things to be said about ticks, but we also have to realize they have been here for a very long time,” she said.

“Ticks are very old, they predate the humans here in the Bow Valley, so we have to respect that they’ve been able to live for so long. They are obviously a very successful form of life.”

Ticks become infected with Lyme disease bacteria by feeding on infected wild animals, such as birds and rodents. Once infected, ticks can spread the bacteria to people and pets by attaching and feeding.

Sperling notes people tend to be more familiar with the workings of mosquitoes – which she calls “very elegant, high-tech blood feeders” that bite, suck blood and leave quickly.

Ticks, on the other hand, unlike most other bugs that bite, typically remain attached to a person long after they bite.

“A tick is going to call crawl along you for a while, it’s going to spend a certain amount of time finding a good place to attach, it then cuts its mouth parts in, and then it cements its mouth parts in because it’s going to be there for a very long time, so over days,” said Sperling.

“Once it’s made this nice cut, and cemented its mouth parts in, it makes an eating tomb, so it’s going to inject saliva and, of course, if you have a virus in the salivary gland it can transit within minutes,” she added.

“It’s going to pull the blood back out… it’s going to concentrate it and spit it all back into you. That makes it an especially bad transmitter of diseases because you can get the disease the first time they push the saliva in, and then you can get it repeatedly over days as they concentrate the fluid and send it back in.”

Of all the ticks species in Alberta, Sperling said there are six that are most commonly encountered – Rocky Mountain wood tick, moose or winter tick, American dog tick, rabbit tick, black-legged tick and Ixodes Angustus.

She said the structure of ticks is quite fascinating, with no proper head and one big body part.

“Ticks are really odd things, they really don’t have a proper head so that makes them just a little spooky,” she said, adding they are more closely related to mites than spiders.

“They’re generally small and flat when they’re walking on you.”

On people, ticks like to burrow into moist and sweaty areas, such as in hair and the hairline, behind ears, back of neck, armpits, elbows, around the waist, groin, back of knees and between toes.

“If you’re all by yourself, it’s actually a lot harder than you might think, so you might have to ask a friend to help you with a tick check,” said Sperling.

“The easiest thing to do after you’ve been out hiking is to jump in the shower and maybe you can wash the tick off before it’s cemented its mouth part.”

For those who find a tick, Sperling suggests putting it in a Ziploc bag in the freezer so it can later be identified if any symptoms show up.

“You can get the tick tested … but it would also help guide your doctors,” she said.

Sperling said a common misconception is a bullseye rash is the only diagnostic manifestation of Lyme disease, which continues to mislead both patients and health practitioners.

She also said some people that get bitten don’t seem to show symptoms or get sick.

“There’s a lot of variability in the people and the ticks,” she said.

Sperling said the controversy surrounding Lyme disease comes down to imperfect diagnostics, meaning clinical diagnosis is critical.

“We don’t have blood tests that can say absolutely you have Lyme disease or absolutely you do not have Lyme disease,” she said.

“The doctors were all worried about false positives but, of course, as a person with Lyme disease you’re really worried about a false negative.”

According to Sperling, there is a history of minimizing the seriousness of the disease to reduce public concern.

“Often people would go to the doctor and say, ‘I think I have Lyme disease’ and the doctor would say ‘oh, don’t worry … if you haven’t been in the U.S. you don’t have to worry about Lyme disease,’” she said.

“They would even go as far as to say it’s the aches and pains of daily living, which I think anybody who knows anybody with Lyme disease, that’s really quite insulting.”

Bentley-Bergh can relate to this history and controversy with Lyme disease.

While the risk of getting Lyme disease from a tick bite in Alberta is considered low, she was frustrated that no one believed her.

Before discovering the tick behind her ear two days after, she had done a tick check and had a shower immediately after her outdoor adventure near Nordegg.

“Back then, I had no idea. All I knew was these things can carry stuff, but not knowing anything about it, I just killed it,” she said.

In 2019, Bentley-Bergh was bitten by a tick again, this time near North Saanich on Vancouver Island, and this time she had the bullseye rash.

“It crashed my system more,” she said.

“I could hardly handle solid foods. I literally lived off meal replacement shakes and vitamins. That’s pretty much what I lived on for six months before I went to Germany.”

After years of going between doctors in Canmore, Calgary and Edmonton, along with naturopaths, pharmacists, physiotherapists, osteopaths, and Lyme disease specialists, Bentley-Bergh now feels she has a new chance at life following her treatment in Germany.

She doesn't want people to shy away from the great outdoors for fear of getting bitten by a tick, but prefers to educate people, push for better testing in Canada, and encourage people with Lyme disease to never give up hope even when it seems hopeless.

“It causes so many issues mentally, emotionally and physically…and if we keep quiet it will never get better in Canada,” she said.