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Lyme disease community pushing for local awareness

Very few cases of Lyme disease reported, and no Kamloops area ticks have been found carrying the bacteria
ixodes tick lyme disease

Years of health issues had Kamloops woman Marnie Freeman looking for answers.

After seemingly endless searching, she found out in January she had Lyme disease — and was surprised to learn of other locals who have it, thinking it was rare in the region.

Freeman said she doesn’t recall being bitten by a tick or developing the rash that comes with the bite, but her health issues have lingered for a decade.

In the last four years her mental health began deteriorating. She also had numbness and extreme fatigue.

“I realized I would not be able to continue working, I didn’t know how I would be able to take care of my grandchildren once that time came because I had no energy,” Freeman said.

She said she was misdiagnosed with other illnesses but, after a naturopath sent a blood sample to a lab in Germany, she discovered she had Lyme disease.

Lyme disease is caused by the bacterium Borrelia, which is transmitted to humans through the bite of Ixodes ticks.

While most cases of Lyme disease can be treated within a few weeks with antibiotics, if left untreated, infection can lead to serious long-term disabilities.

Some people develop a bull’s-eye rash and initial symptoms are flu-like, including fever, headache, nausea, light sensitivity and muscle aches. The infection can spread within the body, leading to skin rashes, arthritis-like pain, cognitive impairment and vision and hearing problems.

Lyme disease is often misdiagnosed, as symptoms can mimic neurological disorders like multiple sclerosis, amyotrophic lateral sclerosis (ALS), Alzheimer’s or Parkinson’s disease.

Lyme-carrying ticks are distributed throughout B.C. but are generally believed to be at low levels in the Kamloops area, according to the BC Centre for Disease Control.

Those that carry the bacteria are more common in the Lower Mainland and on Vancouver Island.

In B.C., less than one per cent of ticks tested carry the bacteria that causes Lyme disease.

Members of the local Lyme community are organizing the second annual Lyme Awareness Walk in Kamloops in Riverside Park this Saturday. Organizer Jen Marie, who did not wish to give her last name, said they want people to be aware there is a risk of contracting Lyme disease in Kamloops and to check for symptoms, noting the illness can be challenging to detect.

Ixodes ticks can be as small as poppy seeds and symptoms can mimic other illnesses.

Being referred for testing in Canada is also not an easy process, Marie said.

She said she was diagnosed with early Parkinson’s, in her mid-20s, which led her to ask a naturopath to test for Lyme disease after two medical doctors had refused, telling her there was no need because Lyme disease isn’t present in Kamloops.

“I knew I was not getting the right answers, nothing was helping,” Jen said. “It [Lyme] was basically the only thing that was matching all my symptoms.”

A blood sample sent for testing to a lab in California returned a positive result.

The diagnosis brought her relief and two years ago she started a support group on Facebook that now has 72 members, and Jen has come to know many locals, like Freeman, who suffer from Lyme disease.

A common story amongst them, she said, is difficulty getting tested for the disease with doctors suggesting there is no Lyme disease in Kamloops.

Jen said she’s been dealing with Lyme for 18 years, believing she contracted it in her early teens in Kamloops.

“I was outdoors all the time. I basically lived in the bush,” the 30-year-old told KTW.

Her health issues persisted and she developed chronic pain, allergies and then neurological symptoms over time.

She said she tested positive for Lyme disease again in 2017 after going on a hike near McQueen Lake in December and discovering a bull’s eye rash.

Dr. Eleni Galanis, a physician-epidemiologist with the BCCDC, said it’s hard to answer whether Lyme disease is prevalent in Kamloops.

“The ticks that carry Lyme do exist in the Kamloops area, but over 20 years of testing ticks that are submitted by doctors and through field studies where we’ve gone out to collect ticks we have never found a positive tick in the Kamloops area for the bacteria that carries Lyme,” she said.

Galanis said one field trip in this area revealed a mouse that tested positive for Lyme, so the BCCDC does believe it’s present.

She said the BCCDC tests about 1,000 ticks are tested every year from doctors, vets or through field research.

“It is still possible that people have Lyme disease even if they live in areas where Lyme is rarely seen in ticks,” Galanis said.

She said people could be acquiring it while travelling or locally — the latter being a rare case.

“In B.C. we have among the lowest prevalence of Lyme in Canada,” she said.

Only one in eight to 10 cases of Lyme disease are reported to public health authorities, but there may be hundreds of additional cases, according to Galanis.

Rare or not, Galanis said tick bites should be taken seriously and care sought.

For Jen, it’s important Kamloopsians know there is a risk and to take precautions.

“Everyone keeps getting turned away by doctors and the hospital saying there’s no Lyme here, but they can’t say that cause there’s no way to test every tick,” Marie said.