Calgary family shares dire tale to raise awareness of Lyme disease

May is National Lyme Disease Awareness Month.

Until three years ago, it wasn’t something to which Jordan Bentz or her mother, Julie, ever gave much thought.

But in September 2020, Jordan, then 10 years old, developed a strange bulls-eye-shaped rash on her leg, after a summer of playing outside and taking camping trips.

"It was just like, oh, you know, I have a rash. It's not really a big deal," Jordan said.

Jordan’s mother took her to a walk-in clinic in Calgary.

“I Googled it, and a bulls-eye rash came up, which is the hallmark of Lyme disease. I didn’t know a lot about Lyme, but I knew that wasn't good. And so we took her to a walk-in clinic," Julie said.

"Because we didn't see a tick, (they) said oh, there's no way that she could have Lyme (disease)."

The doctor prescribed Benadryl and the pair headed home.

Within days, Jordan developed a persistent cough, and over the next few months, her symptoms worsened dramatically.

"She was just becoming increasingly ill. By February 2022, she completely lost her ability to walk. She was in incredible pain. In her feet, burning pain. We would take her to emergency. We couldn't get any answers," Julie said.

"Then, by March 2022, she started having seizure-like episodes that turned into hundreds a day. She lost her memory. She was completely wheelchair-bound. It was devastating."

The Bentz family went from doctor to doctor hoping to find someone to identify the cause of Jordan's decline and offer treatment, but the physicians they saw in Calgary couldn’t agree on the cause or a course of action.

Eventually, they started looking outside the country.

Tests run in labs in both Germany and the United States of America showed the presence of the bacteria causing Lyme disease, as well as other tick-borne bacteria in Jordan's system.

The treatments that followed those tests have cost the family more than $150,000.

Lyme disease is caused by the Borrelia bacteria.

Four strains cause the disease.

Two of them, Borrelia burgdorferi and Borrelia mayonii, are the primary vectors in North America.

The bacteria is carried from host animals, often birds or small rodents, to humans through black-legged ticks.

Borrelia bacteria (green) escaping a blood vessel (red) and infecting a body.

In his lab at the University of Calgary's Cumming School of Medicine, George Chaconas researches the Borrelia bacteria.

"I call it a stranger from another planet," Chaconas said.

"Not literally, but it is very different.

"It changes its coat and constantly puts on new disguises as time goes by so that your immune system is unable to clear it because a new set of variants has popped up. By the time you get antibodies and clear those, yet another set of variants has appeared."

Chaconas says current tests for Lyme disease are imperfect at the onset of the disease as they look for antibodies, not the actual bacteria.

"And it can take many weeks before you develop a positive response because it requires your system to build up antibodies against the infecting organism," he said.

In his lab at the University of Calgary's Cumming School of Medicine, George Chaconas researched the Borrelia bacteria.

CanLyme, The Canadian Lyme Disease Foundation, says there is no universally accepted test for detecting Lyme Disease.

It also maintains that Canadian testing for the disease is fraught with problems, writing on its website, "Overall, Lyme tests in Canada are largely flawed. Other labs recommended by CanLyme are all certified and accredited, run by PhDs who simply refuse to follow flawed testing protocol ... Canada has no mechanism for better testing due to bureaucratic controls that are influenced by for-profit players, and not victims and their experts."

On its website, CanLyme recommends two testing facilities, Armin Labs in Germany and Ingenex Inc. in California.

Chaconas also says the way the bacteria causes immune reactions can lead to a long-term autoimmune disease known as Post-Treatment Lyme Disease, often referred to as chronic Lyme disease.

"About seven per cent of people who are diagnosed and treated can end up with long-term persistent symptoms," Chaconas said.

"At this point, those are believed to come from an immunological response, rather than a continuing infection."

Jordan's condition is improving.

She is no longer bedridden and now can get herself around with the use of crutches.

She is hopeful that one day she will return to playing competitive softball.

Her mom wants people to pay attention to Lyme disease, not just through May, but the whole year, and says Calgarians need to be aware that just because the disease is not endemic to Alberta does not mean it cannot be contracted here.

"(What) I would want people to hear is don't underestimate the possibility of contracting Lyme in Alberta, in Calgary, in your own backyard," Julie said.

"And if you feel like something's wrong, keep fighting. Keep looking for answers. If you don't agree with the diagnosis, keep looking."

Julie Bentz and her family went from doctor to doctor hoping to find someone to identify the cause of Jordan's decline and offer treatment.

General information:

• https://www.canada.ca/en/public-health/services/diseases/lyme-disease.html
• https://www.canada.ca/en/public-health/services/diseases/lyme-disease/lyme-disease-awareness-resources.html

As well, if you discover a tick and want to have it identified to see if it is one of the types that carry Lyme disease, you can submit an image of it to https://www.etick.ca/.

That site also offers a mobile app for both Android and iOS phones.