Lyme sufferer continues battle for diagnosis
The controversy continues to rage over the diagnosis, treatment and probability of Lyme disease and while the arguments go back and forth, Nicole Bottles is stuck in a hell not of her own making.
Bottles, now 18, has been battling with the disease, and the doctors, since 2008. She has suffered through depression, incredible pain, anxiety, hallucinations, short-term memory loss and a host of other side effects believed to be caused by Lyme disease. She is better in many small ways but is confined to a wheelchair and as teenager this is not the way she wants to live her life.
Doctors in British Columbia say she does not have Lyme disease despite having 28 out of the 30 classic symptoms. They have consistently refused to acknowledge the prevalence of the disease in British Columbia.
Nicole and her mother Chris Powell have traveled across North America looking for help. They have gone close to broke spending any money they have on treatments and travel.
A report, Chronic Lyme Disease in British Columbia, A Review of Strategic and Policy Issues, written by Brian T. Schmidt for the Provincial Health Services Authority, states clearly that the current state of diagnostic methods for Chronic Lyme and other relate infections is inadequate and states that this should be the first and highest priority for B.C.
Other recommendations include a range of treatments and therapies that depart from prevailing medical practice, and no investigation of physicians who practice non-traditional therapies. More education and mandatory reporting of Lyme disease is also recommended in the report.
“It’s a national embarrassment,” said Nicole.
Report or no report, Nicole is suffering although her spirit and independence keep her positive and active. Just recently she was seen by an infectious disease doctor, who did no physical exam or medical history, but stated he had fulfilled his obligation to her and said she did not have Lyme disease and he couldn’t help her anymore. She has not been diagnosed with Lyme in Canada although US. testing confirmed the disease.
She is being treated like some sort of leper and doctors won’t touch or treat her. Her PICC line was removed due to a blood infection in March and no one will replace it. They will have to travel to the U.S. once again to get the port replaced. The port is used to deliver antibiotics. There is a risk but Nicole said, “there’s risk for every treatment that’s unorthodox.”
Chris Powell is so angry she will be filing a legal complaint. She feels Nicole’s Charter of Rights have been violated in regard to security of person.
“They didn’t do due diligence,” said Powell.
Dave Bottles, Nicole’s father, suspects he too has Lyme disease. A bulls eye rash on his leg leads him to suspect he has Lyme, as it can be passed through blood.
“I’ve been affected by stress,” he said, “and maybe Lyme disease.”
The whole family has been ripped apart by the impact of the disease and it may not survive. Their home in East Sooke was sold to pay for treatment and they now rent.
Nicole remains positive and sees no benefit to being miserable. It is not a life she said she would choose but she is making the best of a terrible situation.
“I would like to be a good doctor when I’m better. But, I haven’t met too many that are ideal role models,” she said.
She graduated with honours, teaches piano, is learning Spanish, knits, takes photographs and meets friends a couple of times a week when she feels well.
“She is definitely not a couch potato,” said Powell.
Recently Nicole dropped the puck in a 24-hour fundraiser at the Help Fill A Dream Foundation and $80,000 was raised.
At the end of March, in response to the release of a confidential government report calling for better treatment and management of Lyme disease in B.C., the government announced $2 million in funding for a provincial clinic and research study to help address Lyme disease and other complex illnesses.
“Chronic Lyme disease, fibromyalgia,and chronic fatigue syndrome can seriously affect people’s quality of life and cause immense paint and suffering. By taking a leading role, I hope that B.C. can help to positively impact patients across the country by studying these illnesses and learning ways to help patients manage their symptoms.” said Minister of Health Michael de Jong.
Interesting, said Powell, considering that the BC Centre for Disease Control (BCCDC) states repeatedly and publicly that Lyme disease is very rare in B.C.