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Fighting for treatment and recovery

She may still be breathing, but Judi Kimmerly says she lost her life three years ago.
Judi Kimmerly
Struggle: Judi Kimmerly has been suffering from Lyme disease for more than three years but remains hopeful she will get better.

She may still be breathing, but Judi Kimmerly says she lost her life three years ago.

Diagnosed with Lyme disease, the once-vibrant Kimmerly says some days all she can do is sit staring at the carpet and cry because no one is helping her.

“I have neurological symptoms – head pressure, terrible ear-ringing, head aches, heart palpitations, electrical jolts, panic, anxiety. It’s just like you’re not in your body, it’s brain fog,” she says, cradling her head in her hands and struggling to describe her symptoms. “Some days you think you’re going to die and that’s very difficult. But I am not living, I am existing.”

Kimmerly has no recollection of getting a tick bite, but says she became desperately ill in March, 2012, developing a nasty rash on her chest where bedbugs had previously bitten her during a stay at a New York hotel.

Prior to being told she had Lyme disease, Kimmerly began a desperate search for a diagnosis and, more importantly, a cure.

Praying a debilitating case of sinusitis was the cause, she paid $8,000 to have surgery privately after being told she would have to wait for at least two years in the publicly funded system.

Following the operation, her doctor, reputed to be tops in his field, assured Kimmerly she would feel great within weeks. But six weeks later, her symptoms persisted and her doctor said “it’s not your sinuses.”

Because of unbearable pain, Kimmerly has been a frequent visitor to the emergency department at Shuswap Lake General Hospital, where doctors did their best to find out what was wrong.

As time went on with no positive results, Kimmerly says she was told it was all in her head and that ER staff began giving her an “oh, she’s here again” look.

“I was 53, had my own business and raised three kids,” she says adamantly. “I did not go crazy overnight.”

Taking up her own cause, Kimmerly had a blood sample tested at IGeneX, a California lab specializing in clinical and research testing for Lyme disease and associated tick-borne diseases.

When the results proved positive for Lyme disease, Kimmerly headed to a Lyme-literate naturopath on the Coast, who told her she has the disease and several related infections.

But Kimmerly says he was forced to retire because of his efforts to treat people with Lyme disease.

“I don’t understand in 2015 why we are shoving this under the rug,” she says of the medical establishment’s unwillingness to deal with the disease. “I am already a burden on the health-care system; I am not working. Physically, this has been devastating for me.”

Kimmerly headed to the U.S. for alternative health care, but the disease kept recurring.

“I used to be so vibrant. I love my job, I love to be with people, to interact and help people, and now I am always alone,” she says sadly. “I have already spent $20,000, so financially and emotionally it’s been devastating.”

Kimmerly recently discovered another Lyme-literate naturopath, but says if he is unable to help her, she will try to find the $30,000 to $50,000 required to get to the Klinghardt Academy in Seattle.

In the meantime, her daughter drives from Kelowna to take her to Vernon for treatment, brings her back to Salmon Arm and then drives back to Kelowna.

Kimmerly says a complex chronic disease clinic attached to the BC Centre For Disease Control has accepted her but there is a long waiting list.

“I’m supposed to live like this for another year? Give me a break,” she says, pointing out her naturopath is getting very busy as “Lymers” hear about him. She is aware of at least 12 people with Lyme disease in Salmon Arm.

As well as her own losses, Kimmerly says that in the face of 80 per cent of relationships that don’t make it through Lyme, she is lucky husband Jim supports her so well.

“I don’t want people to feel sorry for me, I want to alert other people that you need to listen to your body,” she says. “I just knew something was wrong, but they said no and I trusted the medical profession. I don’t understand why they won’t help.”

Two men have embarked on an 8,000-kilomtere bicycle journey across Canada to bring attention to the thousands of Canadians with Lyme Disease who are misdiagnosed, denied the proper treatment and have to go out of country and pay hundreds of thousands of dollars for proper care.

The Ride For Lyme arrives in Salmon Arm Friday, May 15. To find out more about the disease and the ride, visit www.rideforlyme.ca.