It’s that time of the year when discussions are taking place regarding the various awareness initiatives that are going to occur, as well as determining what other initiatives are ongoing. In this regard, this is a good time to provide an update.

First of all, the Nova Scotia Lyme & Tick-Borne Diseases Association has now commenced regular monthly meetings. It is our intention to meet virtually the first Thursday of every month at 7pm. Unfortunately, we have had a recent resignation of a Board member who is leaving the province. If interested in being on the Board please reach out.

The NS Lyme Advocacy Group has started sitting in on the monthly meetings so that we are all working together toward common goals. As always, we are looking for help. Interested?

The Mission and Vision Statements of the Association are:

Mission Statement: To support, educate, and advocate for Nova Scotians by fostering awareness, providing resources, and promoting meaningful change in Lyme disease prevention and education through collaboration with Nova Scotia Health and other partners.”

Vision Statement: To be the trusted resource for Nova Scotians, fostering a comprehensive understanding of Lyme disease, prioritizing prevention through education, and expanding knowledge, awareness, and access to resources across the province.

Our two main initial goals are to complete a website and undertake fundraising. Funds are necessary to build/maintain the website and ensure that awareness initiatives can be undertaken. In this regard, we are looking for sponsorship/donations. If interested in helping us achieve our goals, please reach out to us. As well, if you know of groups, organizations, individuals, etc., that may be interested in helping out, please forward this information to them, or let us know who to contact.

We are now heavily involved with organizing the annual “Lyme Disease Awareness Month” proclamations and flag-raising’s for May. Four proclamations have now been received. Nova Scotia has proclaimed May as Lyme Disease Awareness Month; as well as the Town of Stellarton; the Cape Breton Regional Municipality; and the Municipality of the County of Colchester.

We have heard back from several municipal units that they will also be undertaking proclamations. As we have a more detailed list, I will continue to add the information in this document.

We also hope to have more buildings lit lime green this year to help raise awareness. If you have a building that you would like to light up green for all, or part, of May, the Pantone colour is Green: PMS 368c.

Two flag-raisings have been scheduled so far. The first one is at 9:00am, Thursday, May 1st at Halifax City Hall. The second is scheduled for 9:00 am, Saturday, May 3rd, at Province House. It would be very much appreciated if you could attend one, or both of these events. We need to show that this is an issue for many.

If you have a social media presence, even if it is a small one, please consider posting Lyme facts during the month of May. To help with that, the following is a blog entry that I did last year with enough facts about ticks and tick-borne diseases to take you through the month – https://shiningthelymelight.com/2024/05/09/lyme-disease-awareness-month-twitter-posts/.

The NS Lyme Advocacy Group helps organize and work on various initiatives. We could use a lot more hands on deck to help move things forward. Please reach out if interested in being involved. It’s not a large commitment. We could really use folks that would help out on behalf of people that are sick, rather than those that are sick trying to do too much.

The ongoing “Tick-Borne Diseases in Nova Scotia – Diagnosis, Treatment, Awareness Requirements” Petition was tabled in the NS Legislature on Wednesday, March 19th, by the Honourable Kim Masland, MLA for Liverpool, an area with a large number of people affected. The petition wording can be found in Hansard for Wednesday, March 19th – https://nslegislature.ca/legislative-business/hansard-debates/assembly-65-session-1/house_25mar19. This is a video of the tabling – https://www.youtube.com/watch?v=hF3BgwMBVTo&list=PLGn3UOvEam0vovpS9gdxnV_kAv8PSPvaD. It starts at approximately 19.23.

Now that the petition has been tabled, it would be a good time to follow up with letters/emails to your MLA requesting that they ensure that the petition Asks are undertaken. Briefly telling them your story and/or why you want to see that happen would be helpful.

This year a book was published called “Life With a Twist of Lyme – Hailey’s Story, a Mother’s Memoir” which is the true story of Hailey Kane, a young lady who shouldn’t have died at 17 years of age. This is a Nova Scotia story which should be read by everyone. It was written by Hailey’s mom, Susanne Kane. Although I knew some of the story because the Kane’s spoke in Wolfville, NS, a few years ago, the full story is truly unbelievable yet, to this day, there are people still going undiagnosed, misdiagnosed, or not adequately treated. Why?

This year also saw a death of a young man in NS who was battling “Post Treatment Lyme Disease Syndrome” or “Chronic Lyme”. Whatever you want to call it, he was originally misdiagnosed with Juvenile arthritis and eventually diagnosed with Lyme arthritis, treated, but still had lingering symptoms, as many can. Bradley Payzant died at the age of 28 from “health complications following Lyme disease” – https://www.arbormemorial.ca/en/atlantic-sackville/obituaries/bradley-a-payzant/137272.html. A little more on the misdiagnosis – https://acrjournals.onlinelibrary.wiley.com/doi/abs/10.1002/art.38498. Has much changed? Not really.

There are presently at least two Lyme/Tick-Borne Diseases surveys underway in Canada:

1. The Canadian Lyme Coalition, a newly formed advocacy group, has prepared a Canadian Lyme Survey – https://forms.office.com/r/ywJJKXfEAF. This survey has closed and some information has been shared – https://canadianlymecoalition.ca/.
2. The Lloyd Tick Lab at Mount Allison University is doing a study on how best to manage tick bites and Lyme disease – https://limesurvey.mta.ca/index.php/337623?land=en. I have asked why the link has “limesurvey” rather than “lymesurvey” but have not yet heard back.

There are also a number of research initiatives underway in Nova Scotia and Canada. The following may not be a complete list:

• Acadia University is undertaking tick-killing fungus research – https://www.cbc.ca/news/canada/nova-scotia/tick-killing-fungus-research-acadia-university
• Ongoing tick research is being undertaken via eTick.ca with Acadia University monitoring ticks in all of Atlantic Canada – https://www2.acadiau.ca/about-acadia/newsroom/news-reader-page/acadia-to-monitor-ticks-in-all-of-atlantic-canada.html
• Dalhousie and Acadia were looking into balsam fir needles/oil killing off ticks in cold temperatures. Although a paper was published on this, it hopefully will continue to be investigated and, from this interview, it sounds like research/development is continuing – https://www.globallymealliance.org/videos/balsam_fir.
• The Bacterial Amplicon Tick Test (BATT), Canada’s first publicly available laboratory test allowing for the identification of all tick-borne pathogens at once, including unknown ones. – https://www.queensu.ca/gazette/stories/technological-advancements-tick-research.
• The Canadian Lyme Disease Research Network was formed in 2018. Although I am not aware of any research being undertaken right now, it is something to keep an eye on – https://cihr-irsc.gc.ca/e/53463.html#.
• The G. Magnotta Research Lab is another group to watch – https://www.gmagnottaresearch.com.
• The Lloyd Tick Lab has been doing considerable research on the topic of ticks and tick-borne diseases and were mentioned above re a survey that they are presently undertaking – https://www.lloydticklab.ca.

Part of the awareness initiatives undertaken by the Canadian Veterinary Medical Association includes – https://ticktalkcanada.com. This site has considerable information. As well, the CVMA’s National Tick Awareness Month initiative, that commences March 1st, ensures that discussions of ticks take place when they become more active.

I think it’s time to change Lyme Disease Awareness Month to earlier in the year, perhaps to coincide with the CVMA’s National Tick Awareness Month. Thoughts?