When you think about the tainted blood scandal in Canada the name Janet Conners quickly springs to mind (https://www.cbc.ca/news/canada/nova-scotia/aids-advocate-janet-conners-remembered-as-a-voice-impossible-to-ignore-1.6558941). When you think about HIV/AIDS activism in the US, you think about the AIDS Coalition to Unleash Power (ACT UP) (https://www.npr.org/2021/06/16/1007361916/act-up-a-history-of-aids-hiv-activism).

There are many similarities between the tainted blood scandal activism, the AIDS activism, and Lyme & Tick-Borne disease activism. You just have to read “How AIDS Activists Fought for Patients’ Rights” – https://www.history.com/news/act-up-aids-patient-rights to see some similarities. However, there are many differences as well. Unfortunately, although there are many Lyme Non-Profits; Lyme Support Groups; researchers; and more, there isn’t a cohesive group, or a person, that is known worldwide working on getting the masses together for protests and large scale events. Don’t get me wrong, there are many, many, people doing what they can but, for the most part, they are working either by themselves or with a small group. Larger organizations are doing amazing things undertaking research, holding conferences, etc., but we still have so much to do to get to a point where everyone is taking Tick-Borne diseases (TBDs) seriously and that those dealing with the effects of a tick bite receive the diagnosis and treatment that they require.

Frequently, when events are organized to raise awareness around the world, including in Nova Scotia, usually only small groups of people attend, if any at all. Organizers, such as myself, hear a number of reasons for the lack of attendance. Things like the time of day; the distance to travel; and that they are too sick to travel, are common to hear. However, I think the main reason, for many anyway, is that they are worried that if they speak up, or are seen out in public at a protest or gathering, any mainstream medical treatment that they might be receiving will be stopped and/or any future treatment required will not be provided as they are seen as causing trouble. These are all valid reasons.

To bypass these reasons we need more people involved that are not dealing with TBDs themselves. Those with family, friends, etc., dealing with TBDs, or even those that don’t know anyone presently dealing with TBDs, but are concerned about the ever increasing risk. The more “healthy” people involved, the better. The more people involved that are in health care and research would be amazing. How do we gather the troops?

When the powers that be actually start looking at the costs associated with no diagnosis, misdiagnosis, or under treatment, of TBDs, they will realize that the savings would be significant if ALL health care practitioners were adequately trained in ALL TBDs. Even better would be a clinic dedicated to TBDs such as the one we asked the provincial government for in 2022. In Nova Scotia, we have a high rate of a number of things that could be as a direct result of being the province with the highest rate of Lyme in the country, such as knee and hip replacements. We also have a very high rate of MS which can have similar symptoms as Late Disseminated Lyme. Not that long ago, when you were diagnosed with MS, it was just MS. Now there are different syndromes or disease courses – clinically isolated syndrome, relapsing-remitting MS, primary progressive MS and secondary progressive MS (https://www.nationalmssociety.org/What-is-MS/Types-of-MS). It is also interesting to note that Lyme is supposed to be one of the things to rule out prior to an MS diagnosis, yet there is no definitive, 100% accurate, test for Lyme. Nova Scotia also has fairly high rates of dementia, mental health issues, Fibromyalgia, Chronic Fatigue Syndrome, ALS, and more. Why? Could the bacteria and viruses being transmitted by ticks be causing many of our issues?

The Nova Scotia government announced in December a new clinic implementing innovative approaches for diagnosing and monitoring inflammatory Bowel Disease. The announcement mentioned that “Inflammatory Bowel Disease (IBD) is a growing concern in Nova Scotia, with one in every 80 people, or 1.25 per cent of the population, affected by the chronic conditions of Crohn’s disease or ulcerative colitis. It is interesting to note that cases of Inflammatory Bowel Disease might actually be significantly reduced in Nova Scotia if TBDs were diagnosed and effectively treated on a more timely basis – “Borrelia Burgdorferi, a Root Cause of Inflammatory Bowel Disease: A Case Report of Successful Treatment and Remission” – https://pubmed.ncbi.nlm.nih.gov/37392196/.

I have mentioned this in the past but I was told many years ago by the head of the College of Physicians and Surgeons that it generally takes 20 years for research to filter down to the actual health care providers. The research and information that has been undertaken over the last twenty years on TBDs is amazing but only those directly affected by the issue seem to be aware of all the new advancements. Trying to get this information to the necessary people is problematic. Trying to get this information to people, and have them read it, is pretty much impossible. Our Chief Public Health Officer has told me on a few occasions that health care professionals are receiving information on TBDs, yet he always prefaces that comment with the fact that he cannot force them to read it. If very busy health care professionals do not believe an issue to be that important, they will not take their valuable time to learn more. Whose responsibility is it to ensure that they realize that the topic is VERY important and that more education is required. For the most part, most health care professionals that have taken it upon themselves to learn more have a personal reason for doing so. They had a family member, friend, or even themselves, struggle to get a diagnosis and treatment due to the lack of knowledge and information.

I have been attempting to form a new Non-Profit Association in Nova Scotia to help address some of the following:

• Development of a comprehensive website, with information on all stages of Lyme and tick-borne diseases. 
• Providing accurate, up-to-date, information to health care professionals through podcasts, interviews, Zoom presentations, etc. 
• Organizing awareness/prevention events throughout the province, including those for Lyme Disease Awareness Month.
• Undertaking fundraising through a variety of methods including, but not limited to – requesting donations from organizations and people; selling items such as garden flags, etc.; holding events such as a walk/kite flying event that would require sponsors; undertaking presentations to businesses/organizations; having a “gala” (which is a lofty goal); and more.
• Involvement with health & wellness events throughout the province.
• Organizing movie/documentary screenings.
• Tick drags – for awareness/testing?
• Get the 3 Asks of the provincial government implemented. 
• Development of a tick testing program in Nova Scotia, for all tick-borne diseases, not just Lyme. That may involve an expansion of Geneticks into the province, but it would be great to provide a free tick testing service.
• Assist with more research. 

Unfortunately, I am having considerable trouble finding people with the health, time, and energy to be involved in something like this. I do believe something more formal than my NS Lyme Support Group or the NS Lyme Advocacy Group is required. Certainly a website would be very helpful so that all information is easy to locate, but that requires funds which an Association could help obtain. If interested in being involved, please reach out to me so that we can discuss further.

As I was writing this post I received an email with a link to the following research paper – https://www.mdpi.com/2647394, entitled ““Small Wins” for those with Lyme Disease in Canada: Patients in an Embodied Health Movement” which actually details a lot of what I am talking about. There have been “small wins” but there hasn’t been enough significant movement to help those with a later stage of Lyme and TBDs. There is also a large number of people that are unaware that ticks carrying diseases can cause debilitating, and even deadly, issues if not diagnosed and treated early. Many still believe the old adage that they are rare, hard to get, and easy to treat. Many also believe that they just cause a rash and flu-like symptoms. The reality is so different.

Please educate yourself and help educate others.