A Twin Lakes couple is warning others about how devastating Lyme disease can be, after one of them fell ill last year and has been dealing with unbearable fatigue, muscle pain, nausea and dizziness.
Brandi Johnstone said her husband, David Johnstone, has been battling Lyme disease and multiple co-infections for the past year and a half.
Last year, around the end of April, Brandi said David had come home from working in the oil fields in Alberta and was more exhausted than usual.
"It's not unusual for him to come home after working nights for a couple of weeks and just feel exhausted. Normally, when he's off for two weeks at a time, his body can kick it, and he'll start to feel the shift come back around and feel normal again," she explained.
"But this time he just couldn't kick it, and then he went back to work, and things just got progressively worse."
David started experiencing growing fatigue, along with heavy muscle pain and joint pain.
"There are days on end where he's been completely bedridden," Brandi said, noting he has had dramatic weight loss, with over 30 pounds lost.
Before the sickness, Brandi said her husband was in the best shape of his life and was very active. He was getting to spend more time at home with two weeks off at a time.
At the beginning, David started seeing doctors at home and while travelling for work, but the couple said they couldn't get any clear answers. Most of the time, they would tell him it was burnout from work.
"It just got progressively worse. And then finally, we did actually have a doctor who did test him for Lyme, and it was through the Alberta health-care system, and it came back negative," Brandi said, noting that she feels that Canada's testing model is outdated and doesn't test for the numerous species of ticks.
The couple also didn't find a tick on David or have the rash that commonly appears, which is associated with Lyme disease. The Public Health Agency of Canada notes that some people may not develop a rash.
Fight for diagnosis
As David kept getting worse and showed symptoms still matching of Lyme disease, doctors were unable to come up with other answers.
Eventually, the couple found a naturopath out of Vancouver who specializes in Lyme disease, and has been working with her since last August.
"So when we first went to her, we did almost $4,000 worth of testing out of our own pockets, because Germany and the U.S. are the most advanced for it," Brandi said.
But now the local doctors won't recognize the positive tests for Lyme disease, since they come from a private clinic.
This story isn't uncommon. One woman in Kelowna shared her struggle with Castanet this past spring when she sent bloodwork from the same clinic the Johnstones used — ArminLabs in Germany — and she struggled to get doctors in Kelowna to acknowledge it.
The BC Centre for Disease Control reported that 17 confirmed Lyme disease cases were recorded in 2024; however, only three cases appear to have been acquired locally, based on available exposure information.
David has also since gone to an internal medicine specialist, who thinks he has fibromyalgia but didn't do any testing.
Because of his state of sickness and injuries, David was placed on disability by his work and has been off since July 2024.
His mental health has deteriorated, not able to do the things he loves like biking, boating and camping.
The couple continues to work with the naturopath, who also practices Western medicine.
"He was on antibiotics for about 10 months, and then he got to the point where he said, 'I don't think I can anymore,' because it's destroying his gut," Brandi added.
"We're treating it all naturally at this point; we've seen brief periods of improvement."
A long road ahead
David is seeing a small improvement in health overall since last summer, but is still nowhere near well enough to go back to work.
"I'm working as much as possible on top, because realistically, his disability [payment] is not that much to keep us afloat," Brandi added. "The costs of ongoing treatments, specialists, and supportive therapies are overwhelming and not covered by insurance."
"As much as we didn't want to start a GoFundMe, it finally got to a point where just the outside support would mean a lot."
The couple also hopes their story will spread awareness that Lyme disease is very serious and to take precautions to protect against ticks.
If you suspect you have been bitten, you can submit a tick for testing. BCCDC recommends you put it in a container with a tight-fitting top and take it to a doctor who can submit it through the Public Health Laboratory.
People can also download the eTick app or visit www.eTick.ca to submit a picture to an expert for identification.
To help donate to the Johnstones, visit the GoFundMe.
