People and Places

Ticked off — An Ottawa woman’s horrific struggle with Lyme Disease

Jenny Campbell feared she was going mad. She was a nervous wreck, suffering constant panic attacks. She was sleeping all day or not sleeping at all. Flu-like symptoms sapped her energy; her joints and muscles ached. Even her memory was failing. The outgoing 38-year-old had always been slim, but at one point, she withered down to a skeletal 95 pounds.

The scary health problems started developing about five years ago. She had wondered if it was the result of stress from a one-two punch of personal tragedies: she was reeling after a close friend and a beloved pet died. But that didn’t make sense: she’d dealt with hard times before and always bounced back.

Nowadays she is still struggling to get healthy and put on weight, but there is some good news. After years of being misdiagnosed, she finally discovered the cause of her health problems: Lyme disease.

“When I found out I had Lyme, I found out the reason for my madness,” she says. “It gave me a reason to fight harder.”
Lyme disease is transmitted by bites from ticks. The small blood-sucking arachnids infect victims with bacteria that, under a microscope, look like corkscrew worms. The disease can cause a wide variety of neurological problems as well as arthritis, weight gain, and weight loss. (Debbie Gibson, an American singer popular in the 1980s, also lost weight after getting the disease.)

This year, Ottawa was designated an at-risk area for Lyme disease. Ticks could be lurking in suburban backyards, sports fields, and overgrown ditches.

Jenny Campbell. Photo: Simon Gardener
Jenny Campbell. Photo: Simon Gardner

Over the years, Campbell has held a variety of jobs: radio station account manager, music festival stage manager and, most recently, real estate agent.

I met her earlier this year at Bushtukah in Westboro, where she works to help pay off debts incurred during periods when she was too sick to work. I had wrongly assumed her very thin, wiry body came from being an extreme fitness buff.
She says her appearance also sparks negative comments. One woman recently sneered that she was too skinny and should “eat a sandwich.” She usually responds to such comments by revealing her diagnosis and using the encounters as a way of raising awareness. “I’m really adamant about telling people if they have these symptoms to ask to get tested for Lyme.”

Campbell never saw a tick on her body. That is not unusual. A study from the United States, where Lyme is rampant, reveals that only a third of patients recall being bitten. And she never noticed the corresponding red bull’s-eye rash that usually forms around a tick bite. She believes she was infected in 2012 but says it was only last summer that anyone in the medical community suspected she might have Lyme disease.

The discovery unfolded like the climax of a television medical drama. She and her mother had gone to the final Tragically Hip concert in Kingston in August of 2016. “We danced, we cried, we had the best time all night, and then two days later I had pains in my legs and I thought it was from dancing all night with my mom.”

She says the pain kept getting worse and starting moving around her body. “It was the fourth day in, and I had a shower and that was it. I couldn’t even stand.” She ended up curling up on a towel on the bathroom floor. Fortunately, she had a phone with her and was able to call her mother.

“My mom came, helped me get dressed. She took me to the hospital. We went to Carleton Place, so we didn’t have to deal with the long waiting period [at Ottawa hospitals]. We got pulled over on the way because my mom was speeding. The cop looked at me and said, ‘You should have called her an ambulance.’ He let us go,” she says.

At the Carleton Place and District Memorial Hospital, Campbell was immediately placed on a stretcher and put on an IV drip. The staff then started testing for Lyme.

“I had no idea I had Lyme,” she says. “If you look at all the symptoms, everything is a symptom of Lyme, but it just never occurred to me.”

She was put on powerful antibiotics for a month.

“So after the antibiotic [my doctor] said to me: ‘We think we got it. For the next five to ten years, you’ll still have symptoms, but we are pretty sure we got it in time.’ Great! Thanks!” she says sarcastically.

She’s still struggling with her weight. When I sat down to interview her, she was 95 pounds; her ideal weight is 115 pounds. She is on a weight-gain plan that involves gulping down calorie-rich protein shakes.

“I guess in a way I’m lucky it was only five years of misdiagnosis. But in those five years, I really did lose everything,” she says.

Jenny’s struggle has motivated her to help raise awareness about Lyme disease. If you have questions, you can email her at tojennycampbell@gmail.com

Jenny Campbell. Photo: Simon Gardener
Jenny Campbell. Photo: Simon Gardner