It’s hard to think about Lyme and tick-borne diseases (TBD’s), at least for me, due to everything that is happening in the world, especially to the south of us. Social media has many wonderful uses, but because of it, we all know everything that is happening, as it happens. It is not good for anyone’s mental health but especially anyone dealing with an illness. Stress can impact you in many ways. If nothing else, please do not read social media in bed. Certainly not before you go to sleep. Read a book, do a crossword, meditate, whatever works to help you get your mind off world events.

I always look forward to a new year as I always hope that this will be the year of change when it comes to Lyme and TBD’s. Every year I think that this has to be the year that we will see significant improvements made. We will have better educated health care practitioners. We will have better year-round awareness. We will see new and improved testing that can accurately tell you, at all stages, that you have Lyme so that treatment can start as quickly as possible. We will finally have the realization that one set of treatment guidelines does not work for everyone and that Lyme and tick-borne diseases need to be diagnosed and treated based on the patient, not on a standard one size fits all treatment. It doesn’t.

I had a bit of hope for this year but recent segments by CBC really angered most of us dealing with, or advocating for, Lyme and TBD’s – https://www.cbc.ca/player/play/video/9.7048962, https://www.cbc.ca/news/investigates/celebrity-chronic-lyme-industry-9.7056234, and https://www.cbc.ca/player/play/video/9.7068925. Although CBC has generally been quite good in getting accurate, up-to-date, information out to the public, as least in Nova Scotia, these three pieces have really done quite a bit of harm and made me think of articles that came out ten years ago, or more.

It is interesting to note that sometimes information like this gets publicized prior to a Lyme conference or event that might raise questions regarding how Lyme and tick-borne diseases are being dealt with in this country. It has happened before in 2019 when, just prior to the Bridgewater Lyme Conference, a doctor was brought in from the US to discuss Lyme with doctors at the IWK Hospital. He minimized Lyme by saying “it’s only Lyme” and actually joking about it.

The first week of February there was a conference in Gatineau, Quebec to discuss Lyme and tick-borne diseases. On February 2nd, the day before the actual conference commences, there was a one hour (yes, only an hour) panel discussion entitled – “Navigating Complications of Lyme disease: Translating Research, Practice, and Experience to Improve Patient Care”. Unfortunately, the event was in-person only, limiting the number of people that could benefit from this type of discussion. The panelists were Dr. John Aucott of Johns Hopkins University, Dr. Adrian Baranchuk of Queen’s University, Dr. Brian Fallon of Columbia University, and Dr. Ralph Hawkins of the University of Calgary. I would have loved to hear them speak as they are all very knowledgeable regarding the topic. The 2016 Lyme Conference in Ottawa allowed for people to watch and participate from their homes, ensuring that people that were unable to travel could benefit from the information shared.

On January 21st, Global News published the following article – https://globalnews.ca/news/11623135/lyme-disease-patients-care-gaps-canada/ which mentioned the panel discussion, but didn’t provide any information on how to attend. Very limited information seemed to be available other than on Facebook and perhaps other social media sites. It was not mentioned on the Agenda for the two day TickNet Conference that was taking place on February 3rd and 4th. It seems to be a stand alone event before the main event.

But back to the CBC segments. They questioned whether stars that have said that they have been diagnosed with Lyme truly have it. They questioned “Chronic Lyme”, which is more commonly know as Late Stage Lyme or Post Treatment Lyme Disease Syndrome. They mentioned the bull’s eye version of the erythema migrans (EM) rash, rather than the fact that other types of EM rashes are more common and that many people do not get, or see, a rash. They mentioned that most people can be treated with a short course of antibiotics but didn’t mention that many do not get diagnosed at the Early Localized (Acute) stage of Lyme and that as the Lyme bacteria progresses throughout the body to the Early Disseminated and Late Disseminated stages, symptoms can worsen and cause cardiac, neurologic and arthritic symptoms. They didn’t mention that ticks can carry other tick-borne diseases, such as Anaplasmosis, Babesiosis, and more, along with, or instead of Lyme, which can make a prompt, accurate, diagnosis much more difficult.

Dr. Michal Tal at the Tal Research Group at MIT is undertaking research on Long COVID and Late Lyme – https://talresearchgroup.mit.edu. They are looking at the similarities in the two and trying to determine why some people continue to have symptoms even after treatment. It’s worth reading about.

There are others that are looking at the same issue, such as Johns Hopkins – https://www.hopkinslyme.org/lyme-disease/treatment-and-prognosis-of-lyme-disease/ and Columbia University – https://news.columbia.edu/news/when-lyme-disease-doesnt-go-away, and many more. I selected these two specifically because doctors from both are part of the panel discussion in Quebec.

Lyme and tick-borne diseases can become debilitating, for a number of reasons, not least of which is that doctors are still not adequately educated on the topic. In Nova Scotia, for instance, I know of people in their third and fourth years of medical school that have advised that very little is mentioned, even though Nova Scotia has the highest rate of Lyme in Canada and one of the highest in North America.

Many doctors still think a negative ELISA blood test means you don’t have Lyme. They are unaware that there are several possible reasons why a test may be negative. Many doctors also still believe that the bull’s-eye version of the EM rash is the only type and will misdiagnose other types as Cellulitis, Ring-worm, and who knows what else. Many doctors are not aware that other tick-borne diseases, like Anaplasmosis, can alter the types of symptoms that can be seen and that children may have different symptoms.

There is so much we still need to learn but there is also a considerable amount of information available from places like Columbia University, MIT, Johns Hopkins, Mount Allison University, Acadia University, etc. Lots of research is being undertaken. Educate yourselves, preferably before you, or someone you love, is affected.

In November of 2024 the Nova Scotia Lyme & Tick-Borne Diseases Association was officially registered. At that time we had a six member board. Due to a variety of issues, such as moving out of the province and workloads, we have had three resignations. However, we have been fortunate to have three new people joining us. Having gone through this we now realize that we need a larger board so that we can maintain a quorum when some members are unable to attend. Therefore, we need YOU!

We have been meeting for an hour the first Thursday of the month at 7pm, via Zoom; however, we are in the process of trying to ascertain if this date/time is still working for everyone. Due to vacations and a limited Agenda we took July and August off.

Along with Board members, we also have a number of Lyme advocates that attend our meetings to keep them in the loop as they help with initiatives. We could also use more advocates.

We have no specific requirements to become a Board member other than you have to reside in Nova Scotia. We would love to include people from a number of stakeholder areas such as pharmacists, naturopaths, doctors, nurses, veterinarians (or people that work in that field), those that work in fields that are considered greater risk (Search & Rescue, NSPC line technicians, surveyors, and more), etc. Some knowledge of Lyme and tick-borne diseases would be helpful, but not necessary. We can educate you in that regard.

Please reach out to me if you are interested in learning more about being on the Board OR if you would like to help out with advocacy efforts. We are presently working on a website but we need financial assistance for this to come to fruition so fundraising ideas are needed. As well, we will be commencing our awareness building initiatives for early next year very soon and could use help in this regard.

If you are unable to commit to time, perhaps you can commit to a donation OR helping to get the word out that we need financial assistance to get things moving forward. If you know of anyone that might be interested in helping us out financially, please feel free to connect us. Unfortunately, we cannot provide tax receipts at this time as we are not a registered charity (working on it).

We are not asking for a lot of time or effort, just what you feel like you can give. We understand that everyone is busy, but Nova Scotia has the highest rate of Lyme in the country and other tick-borne diseases, like Anaplasmosis, are steadily increasing as well in this province.

We need to do more to help educate the general public and health care providers.

Interested? You can respond to this post or find me on social media.