While she has learned to “roll” with it, a woman in the Williams Lake area with Lyme disease is hoping to raise awareness for others.
May is Lyme disease Awareness Month and Karly Brown is speaking out.
“There are some people who are bed-ridden with it,” she said from her home in 150 Mile House. “I am not, but I feel I need to speak for the people that can’t speak.”
She encouraged other people with chronic illness who don’t have a diagnosis, like she did for years because doctors could not figure it out, to get tested.
Lyme disease is the common tick-borne disease in B.C., caused by black-legged ticks, most commonly found in southwestern B.C., including Vancouver Island, the Gulf Islands, Sunshine Coast, Greater Vancouver and the Fraser Valley.
The B.C. Centre for Disease Control website states between 2013 and 2022, six to 39 cases of Lyme disease were reported each year; most related to out-of-province travel. Locally acquired cases range from one to 14 cases per year.
Brown’s initial lab tests in B.C. resulted in a negative diagnosis, but a blood test sent to Germany came back positive, which she said is due to Germany having more detailed information about a person’s immunity response.
Brown described the symptoms of Lyme disease like having the flu.
“The big ones I have had for years are body aches in my muscle joints, stomach issues like a lot of food sensitivities, pain and nausea.”
She has also had chest pains, heart palpitations and brain fog.
Once she had her diagnosis and was seeing a doctor, the doctor told her one of the biggest symptoms is pain throughout the body but it moves around from one area to another.
“It migrates around randomly. That is a typical Lyme symptom.”
Since being diagnosed, Brown said she been told by the doctors she has seen that ticks can be as small as the size of a poppy seed and sometimes people do not get a rash from being bitten.
She has always had horses, and remembers pulling ticks off her horse when she was a teenager and wonders if that’s how she got Lyme disease.
“I had to put him down two or three years ago and he had symptoms that I really wonder if he had Lyme disease, but it’s so hard to diagnose in people let alone in animals.”
Before moving to the Cariboo she lived in the communities of Armstrong, Kelowna and Vernon.
For 20 years, the Canadian Lyme disease Foundation has been promoting advocacy, education and research in Canada about the disease.
“Canadians were not being informed about the complexity and scope of tick-borne illnesses in Canada, leading to confusion and frustration for many patients and their health-care providers,” notes the foundation’s website. “Although there have been small wins over the years, there’s still a lot of work to be done.”
Brown relies on the foundation’s website for current information and said her own journey has been frustrating.
“You get diagnosed then you look online and there are two different medical opinions as to whether it is real or not.”
Brown has been treated with antibiotics to try and reduce symptoms and finds when she is off them she feels worse.
“Every person is different and there is not just one way that will work for everyone. It’s kind of mine field and quite often I feel really terrible.”
Similar to others in the Williams Lake area, Brown does not have a doctor locally. She continues to meet over the phone with a doctor in Vernon and a naturalpath physician in Castlegar.
Previously Brown worked at Cariboo Memorial Hospital in the lab, but these days works from home a bit on computer so she can control her hours.
“It’s really up and down,” she said. “Every time you change medications you feel terrible. I always hope when I’m feeling terrible that I’ll feel better the next day.”
The biggest thing with Lyme is getting an early diagnosis and treatment early, she added.
READ MORE: Justin Bieber announces he has Lyme disease
READ MORE: Online map tracks B.C.’s high-risk Lyme disease zones
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