Woman's 'summer flu' turned out to be a 2-year battle with Lyme disease: 'I was very debilitated'

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Catherine Kinsella thought she had developed a "summer flu" when she became ill in the summer of 2013. Ten days after enjoying a hike, the then 50-year-old developed a high fever, a headache, sore throat and body aches.

“It was severe fatigue that I couldn’t get out of bed," Kinsella tells Yahoo Canada. Over the next few days, the mother-of-two began developing "strange" symptoms that set off alarm bells for the accomplished registered nurse. "I couldn’t think straight. I couldn’t process information and I had tingling in my fingers and toes. Those were two symptoms that I think were a real sign that something wasn’t right."

Kinsella developed Bell's palsy, a neurological disorder that causes weakness or paralysis on one side of the face. “I kept getting vision problems, hearing problems. With my Bell's palsy, I could hardly swallow. I couldn’t eat. I ended up in the hospital."

Despite the extensive list of symptoms, it was months before a blood test revealed that Kinsella had tested positive for Lyme disease.

"I was at work one day and in bed the next," says Kinsella, who did not recall ever being bitten by a tick during her hike. Eventually, she would learn she had neurologic Lyme disease, a condition that impacts less than 15 per cent of people with untreated Lyme. The "Looking At Lyme" podcast host says she feels "fortunate" that she developed such an unusual case of Lyme disease that made her symptoms hard to ignore.

"Some people can just get through their day and then it’s really hard to figure out when people aren’t that sick," she explains. "I was very debilitated."

What is Lyme disease?

Lyme disease is an infection caused by spirochetes (corkscrew shaped bacteria) called Borrelia burgdorferi, spread through bites from infected ticks.

There are three stages of Lyme disease:

Stage 1 (Early Lyme:) The first few days after infection, when Lyme disease is most treatable.

Stage 2: The infection spreads throughout the bloodstream in the weeks following infection, usually marked by worsening symptoms.

Stage 3 (Chronic Lyme): The weeks, months or years following infection if left undetected or properly treated.

What are the symptoms of Lyme disease?

According to Dr. Janet Sperling, an entomologist, researcher and president of the Canadian Lyme Disease Foundation (CanLyme), symptoms of Lyme disease vary on where the spirochetes travel throughout the body. The direction the bacteria takes also effects how quickly symptoms will appear. Neurologic Lyme disease, the kind that impacted Kinsella, is caused by spirochetes infecting the central nervous system, including the brain and spinal cord.

According to CanLyme, there are more than 100 symptoms linked to Lyme disease, ranging in severity from flu-like symptoms such as headache, fevers, fatigue, upset stomach and diarrhea, to symptoms such as numbness/tingling, mood swings, unexplained weight loss, hair loss, shortness of breath, muscle aches and difficulty with speech and mobility.

One of the common misconceptions with Lyme disease is that you'll feel a tick bite — or that you'll develop a "bullseye rash." According to research, only approximately 9 per cent of cases will develop erythema migrans (EM), a “bullseye rash” that's a unique marker of stage 1 disease. Now, research supports a “red plaque or patch” that occurs in more than 50 per cent of cases as a marker for Lyme disease.

“If you get a tick bite and you have a non-specific flu within a month, go straight to your doctor and make sure they know that you had a tick bite," Sperling tells Yahoo Canada.

If see the tick on your body, remove it and put it in a plastic baggy with the date and where you think you were bitten and put it in the freezer. If you start developing symptoms, you'll be able to send the tick away for testing. Companies like Geneticks can test the tick to see if it carried Lyme or other tick-borne illnesses that could compromise your health.

While the tick may test positive for Lyme, Sperling says there is no "perfect" blood test for Lyme disease in humans. A tick positive for Lyme disease should be enough to receive antibiotics, however it can be more difficult if you don't have the tick with you or if you don't recall ever being bitten, since it takes time for the body to develop an antibody response for Lyme.

"Early on, there are a lot of false negatives," she says. "Then you reach kind of a sweet point where you’re probably going to get a good antibody response, but that could happen after six weeks up until about a year."

Treating Lyme disease in Canada

Lyme disease is often treated with lengthy doses of antibiotics, typically lasting 4-6 weeks. Treatment varies depending on when diagnosis occurs. However, there is some controversy over patients' ability to access treatment in Canada.

Canadian physicians are required to follow the Infectious Diseases Society of America (IDSA) for diagnosing and treating Lyme disease. The IDSA relies heavily on lab tests (a two-tier testing system) and strict treatment guidelines.

There have been multiple physicians in Canada who either gave up their licences or lost their licences to practice medicine after being investigated for going against IDSA guidelines and administering antibiotics — even though some patients reported that their symptoms improved.

In Sperling's opinion, the IDSA's guidelines and the close monitoring of physicians have caused some doctors to be overly cautious when it comes to treating Lyme disease.

"Canadian doctors are worried. They’ve got a tough, tough job and they’ve got more patients than they really know what to do with. They’re not going to risk their medical license because we can’t guarantee that any one person is going to get better," she speculated. “I firmly believe we have to go back to the idea that Lyme disease is a clinical diagnosis."

Yahoo Canada reached out to the IDSA and Association of Medical Microbiology and Infectious Disease Canada for comment but did not receive a response at the time of publishing.

Travelling abroad for treatment

Although there are risks to being on antibiotics for long periods of time (including bowel infections and allergic reactions), some countries, like the United States have a different approach to treating Lyme disease. The United States follows the International Lyme Disease and Society guidelines (ILADS), which allows for physicians to use "clinical judgement" when assessing cases devising a treatment plan. Without the emphasis on positive lab tests, patients can receive antibiotics based on their presenting symptoms.

"There’s no single answer for any one person," Sperling, who supports ILADS model over the IDSA, says. "You always have to look at the individual and say, ‘what is the risk of the antibiotic for that person sitting in front of you?’ And sometimes the risk of the antibiotic is so minor compared to the potential for curing that person and having them go back to work."

Kinsella turned to a naturopath for help after taking antibiotics for her neurologic Lyme disease — but eventually sought treatment options in the United States. The road to recovery was long; she was off work for a year due to Lyme disease, and it took another year before she could resume her duties full time.

The financial impact and impact to her ability to parent her two children was also great. She wonders if the severity of the illness could have been avoided if she had access to a longer course of antibiotics earlier on.

"When I look back at it and I think — a few more weeks of antibiotics at the beginning might have prevented a lot," she speculates. "A proper treatment might have prevented further problems down the road — I can’t say for sure, but it’s possible.”

When asked how her health is now, Kinsella is wary to give a definitive answer. "My answer is, I don’t know. I’m pretty healthy now," she says. "I’m active and healthy and I’m doing all this work. So, it’s possible to get better but people that have Lyme disease have to really take care with their diet and their lifestyle as part of staying better.”

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