Nicole Bottles’ mother Chris Powell provided this update on the young woman still fighting Lyme disease.
Life is good here in Saanich other than continued controversy around Lyme disease.
Nicole is singing with two choirs, knitting up a storm for her online business (www.ivcomfycovers.com), plus teaching knitting at various libraries. She spins raw fibre as well and has been building websites for people around the world in exchange for raw fibre or fabric from as far away as India. She has also advanced from ‘wheelchair’ yoga to floor practice with the help of three amazing, generous teachers! Nicole will be auditing a Roman history course at UVIC next semester and has been working through a Latin course on her own that began at the ‘Latin for Teens’ course at the library last fall and winter.
Medically speaking, Nicole has had some one-hour ‘short’ term memories (one this summer at a friends on the Sooke River) but obviously still has a long road ahead. She is still on meds, still battling this insidious disease and winning on some fronts. Her pain is considerably better and miraculously she is finally able to accept hugs after five long years!
The Chronic Disease Program that opened in September in Vancouver has turned out to be deeply disappointing after promises made and now broken by the government. The program has no intention to actually ‘treat’ people with Lyme disease beyond merely giving people some meditation strategies, pacing, diet info and things of that nature which do absolutely nothing to kill the bacteria. Nicole already does all of the above! Lyme disease sufferers need a team of Canadian doctors willing to listen to the wider body of science that says long term antibiotics DO help alleviate symptoms much like meds given to those with TB or even those with acne who are routinely given up to two years of antibiotics with no questions asked. Why are Lyme lepers any different?
CanLyme withdrew their support for the clinic a few weeks before the opening. Nicole and I decided we needed to show our displeasure of the program’s direction and lead a group of about 35 from Victoria and Vancouver to the open house on September 12 in Vancouver. Lana Popham had a brilliant idea to have each of us carry a U.S. flag to indicate our positive test for Lyme in the states, yet the continued negligence on the part of the Canadian medical profession to acknowledge any of us. They definitely caught the eye of staff and the media. After a big fanfare by the director and other dignitaries touting their marvelous program, we were able to ask questions and finally after much repetition of the same question, Dr. Bested admitted that long-term antibiotics were not part of the protocol, nor were IV antibiotics because they ‘didn’t have the facility’ to offer them to patients. So, once again Lyme disease sufferers have been shoved out of a program that was supposed to help them. Nicole was interviewed by Global News with the anchor commenting that ‘there was another side to the story.’
Elizabeth May MP, has a private member’s bill calling for a National Lyme Disease Strategy. It is number four up for debate when the house resumes Oct 16. Nicole and I spent two weeks in Ottawa last May visiting many MP and Senators’ offices asking for their support of the bill. We received 100 per cent support from all parties and were amazed and encouraged. Many MPs either knew a constituent with Lyme or a personal connection. A group of senators from both parties want an inquiry. Senator Nancy Greene-Raine has a relative battling Lyme. I believe once the bill is passed a lot of hard work must be done to ensure Canadians get the help they need if they are bitten by a tick. We can do this. We must.
So, lots happening in our lives. We continue to try and get care for Nicole and advocate with/for others who suffer from this disease. The US Center for Disease Control recently announced 300,000 new cases of Lyme Disease, a 10-fold increase versus the absurd 258 cases reported in Canada. We know Canadians can do the math and with thousands of kilometers of our borders touching this just doesn’t add up. Inaccurate reporting, deeply flawed testing and improperly trained doctors are just a few of the causes. When will the suffering end?