While waiting for my appointment with Dr. Boucher, I filled in my time by sending emails and generally being a bit of a pest. Emails went out to the Provincial and Federal Minister’s of Health. To the Chief Medical Officer. To the Dalhousie Infectious Disease Research Alliance (DIDRA). I wanted to ensure that the issue of tick borne diseases was being looked at with the proper amount of concern.
I advised everyone of the various cases that I had come across. I mentioned my particular case. I tried to raise awareness and, hopefully, the level of concern for the issue.
I must give credit where credit is due and note that I received two very detailed letters from the Honourable Leona Aglukkaq, the Federal Minister of Health. One in 2011 in response to the email I directed to her and one in 2013 in response to an email I directed to the Prime Minister. One thing that stood out to me in the letter in 2011 was the line “Lyme disease should be diagnosed clinically with support from, but not total reliance on, serological diagnostic tests.” The letter went on to say “Current guidelines state that laboratory results are not required for a physician to make a clinical diagnosis of Lyme disease and initiate treatment.” This was in 2011! However, the clinical diagnosis appeared to be stymied by our local College of Physicians and Surgeons. I met with Dr. Gus Grant, Registrar and CEO of CPSNS, who advised that he could not “allow” Doctors to clinically diagnose Lyme as there was too much symptom overlap and a misdiagnosis could occur. He noted that there was always a lag time between emerging diseases and the science-based medicine to adequately diagnose and treat. I didn’t want to be one of those waiting for the science-based medicine to catch up so I started an email group of Health care providers and politicians and forwarded whatever new research information I could find! Whether any of them ever reads the information I send, I will probably never know. Certainly, nobody ever gets back to me in response to the various emails that I send.
During all these emails in 2011, I decided to also start up a “Lyme Disease in Nova Scotia” facebook page to create more awareness in the province. After a few people from New Brunswick, PEI and Newfoundland & Labrador “Liked” the page I added “& the Maritime Provinces” to the title. There are now 465 “Likes” with people from all of the Maritime Provinces, but mostly Nova Scotia. Rare? I don’t believe so!
During this email campaign, I was also working on having Dr. Murakami speak in Bedford while in the province on another matter. In my capacity as Chair of the Bedford Residents Association I was working with our local MLA, Kelly Regan, to give the event more “clout”. Dr. Murakami’s presentation in Bedford resulted in over 100 in attendance. He also did a presentation in Mahone Bay which was also well attended. Most of the people at both of these events said that they had dealt with Lyme, thought they might have it, or had a family member dealing with it. Did this mean Lyme wasn’t overly rare in the province? Perhaps.
What was it going to take to elevate the issue in the province?