CANMORE— Five years ago Candice “C.J.” Bentley-Bergh was an active outdoor enthusiast who embodied the Canmore lifestyle.
She had been living in Canmore for 13 years, loved the mountains, the Bow Valley hiking trails and was working on becoming an EMT.
However, her life came crashing down as her body slowly began to turn on her with an unknown illness.
Bentley-Bergh was officially diagnosed with chronic Lyme disease two years ago after displaying symptoms for almost three years.
“The symptoms hit within a week,” Bentley-Bergh said. “I had weird illnesses that doctors couldn’t figure out — my body is in flight or fight mode 24-7.”
She has undergone countless tests since the first tick-bite that infected her with the disease.
“When I’m not on medication, my system crashes and everything hurts.”
The disease has been life-changing, she said. Over the last five years she has learned to roll with the punches and keep on fighting to get healthy.
“Lyme can corkscrew and anywhere in your body can be effected – my memory, my ability to talk and form sentences,” Bentley-Bergh said. “Good days you get out, bad days you're bedridden. Every day is a surprise ... it’s scary.”
For now, she said she is grateful that she still has her mobility and her symptoms have not gotten worse.
It is an exhausting way to live, especially because before her diagnosis she was active – hiking in the Rockies and working out at the gym.
“My life just completely crashed … right now a flight of stairs exhausts me,” she said. “I lost my purpose. I got depressed.”
It has been a frustrating experience because she could not understand what was happening to her body, she said, and she was unable to find an answer in Canada.
Bentley-Bergh received negative results for Lyme disease in tests administered in Canada, but was concerned it was incorrect. So she had tests done in the United States and Germany.
Both tested positive for Lyme disease.
Medical officer of health Calgary zone Jia Hu said that currently there are no known cases of Lyme disease that have been contracted locally in the province. However, he added Albertans who travel to other provinces or parts of the United States have contracted the disease.
Diagnosing Lyme can be “tricky on a number of levels,” he said, because the tests for the disease do not become positive until after the initial symptoms start.
“If you do a test too early, the results will be negative even if you do have Lyme."
Another aspect that can make diagnoses difficult is that physicians are not always aware of the symptoms of the disease.
“I’m quite confident of the diagnostic tests in Alberta,” Hu said. “It’s just the way the tests work, they won’t necessarily catch early Lyme.”
Hu was unable to comment on testing results from other countries.
Bentley-Bergh said she experiences chronic fatigue and pain because of the disease. As well, her doctor continues to study if she has any other health issues that need to be treated.
She works with doctors in Canmore, Calgary and Edmonton to manage her Lyme disease, along with a naturopath and pharmacist.
After numerous blood tests, symptom reports and exploring if she is a good candidate, Bentley-Bergh was accepted to Klinik St. Georg in Bad Aibling, Germany, that specializes in treating Lyme. She will be travelling for treatment in 2020.
“Unfortunately, the treatments right here in Canada aren’t helping me enough,” Bentley-Bergh said. “It’s really hard to get diagnosed in Canada with Lyme disease, the test really needs to improve.”
Because the diagnosis did not come from Canada she is unable to receive treatment for the disease from a doctor in this country.
It costs approximately $60,000 to receive the treatment in Germany, none of which is covered by health care because she tested negative in Canada.
“Nothing is covered,” Bentley-Bergh said. “I pay it all on my own – it comes out of my pocket.”
This price tag comes after she said she has been paying between $250 and $500 a month in supplements and medication to manage her disease.
The community has rallied to support her, with a fundraising concert at the Drake in Canmore being held at the beginning of November.
Klinik St. Georg is world-renowned for treating Lyme disease, she said, and has one of the highest success rates of treating its chronic symptoms.
Bentley-Bergh said she is nervous about going to Germany because the treatment, while effective, “sounds like torture.”
The procedure uses hyperthermia and she will have her body temperature raised to almost 107 degrees over two hours and lowered again to a normal temperature over two hours.
After receiving the treatment, Bentley-Bergh will return home for six months and adhere to a strict diet of supplements and medication and then make another trip to Kilinik St. Georg for a further week of procedures.
“I’m excited for that second trip,” Bentley-Bergh said with a laugh. “Because I’ll have the energy to travel.”
She said she wants people to learn from her story and be aware of the danger of ticks without scaring them away from hiking and enjoying the great outdoors.
“I can enjoy life, but I’m more conscious,” Bentley-Bergh said. “A tick can be the size of a poppy seed.”
Roughly 30 per cent of deer ticks and blackleg ticks in Canada carry Lyme disease.
Hu said that Lyme is becoming more common as a result of the effects of climate change.
“The main thing to really prevent getting Lyme in the first place is wearing long pants, covering yourself up and staying away from shrubs and woody areas where the tick that carries Lyme lives,” Hu said. “After a day hike, check to see if you have any ticks on you.”
To contract Lyme disease, a tick carrying Lyme has to be attached to your skin for 24 to 36 hours. Hu added that people should keep an eye out for the “bullet-eye” rash, he added, but that symptom is not always present.
If you find a tick attached to your body, it can be taken to a family doctor to be sent for testing. If an unattached tick is found it can be dropped off at an AHS Environmental Public Health Office.
In Alberta some ticks carry Lyme disease, Hu said, but they are very few in number.
“You're unlikely to get Lyme disease in Alberta right now,” Hu said. “The risk is pretty low – but it’s not impossible.”
