For a young woman on the threshold of fulfilling her dreams, the pain and anguish of Lyme disease is just one of the barriers to independence that Nicole Bottles has to deal with.
Her bright, optimistic attitude is serving her well — it’s made the difference between being angry and upset or enjoying what life has to offer.
In 2008 her life changed, as did the lives of those closest to her. She was living in East Sooke with her parents, Chris Powell and Dave Bottles, doing what every other teenager did. Then things began to change. Headaches, nausea, joint and muscle, pain and confusion combined with concentration issues and memory problems were followed by more excessive health issues such as heart palpitations and air hunger.
Those are just some of the health problems the then 15-year-old had to deal with. A false negative test for Lyme disease sent her and her parents on a search for answers, treatment and confirmation that she did indeed have Lyme disease. She was misdiagnosed and from there her world spiraled down.
It meant an end to so many things, but Nicole does not whine about such things. She has turned what is a desperate situation into one where she is in control as much as she can be.
“I’m doing okay,” said Nicole Bottles recently.
She is still wheelchair bound even after years of treatments with antibiotics and controversial “liberation therapy” CCSVI, a method of unblocking veins. Each has given her some relief but the biggest battle she has been fighting is the one with the medical establishment which refuses to recognize the increased occurrence of Lyme disease in British Columbia and the long-term antibiotic treatment necessary. She has been turned away for Children’s’ Hospital, ignored by doctors and refused medical treatment.
She said the medical establishment’s attitude toward Lyme disease has taken a turn for the worse.
“It’s not just ignorance anymore,” said Nicole. “It’s like a witch hunt.”
Chris Powell said that to see an infectious disease doctor was pretty much useless.
“We’re not even getting in the door. There is so much denial,” she said.
Nicole said it is “criminal” as the doctors can’t even agree on a what a diagnosis is.
Powell has become a strong advocate for people’s rights in regard to Lyme disease. She is so strong in asserting Nicole’s rights that she has even been accused of having something to do with Nicole’s illness. Powell said there was some absurd suspicion of her having Munchausen syndrome.
Some doctor’s even thought it was all in Nicole’s head because she was so happy. Despite the cost to the family in both money and emotion, they remain hopeful. Nicole is slowly getting healthier although her immune system is weak and fragile.
Today Nicole takes wheelchair yoga three times a week, sings in a choir, plays piano, reads, knits PICC covers for sale and does a host of other things with her friends. She wants to go to university and take “everything” but for now she can’t because of memory loss. Her pain is a lot better managed and the blackouts, hallucinations and seizures are alleviated.
She does have one dream though that will be fulfilled by the Help Fill a Dream Foundation and that is to go whale watching in Baja, California.
“You can choose whether you live your life or let it drag you down,” said Nicole. “Don’t focus on the bad stuff — it won’t make you feel better. It helps being positive.”
The Sooke News Mirror has been following the progress of Nicole Bottles since the first story appeared on August 20, 2008.