As Lyme disease and other tick-borne diseases (TBDs) present a growing danger to Nova Scotians, in 2022, the NS Lyme Advocacy Group presented to the PC, NDP and Liberal Caucuses regarding this issue. The presentation included three Asks:
- Lyme Clinic – There is an urgent need for a clinic in Nova Scotia dedicated to complex Lyme and Tick-borne diseases, similar to the Tick Collaborative Care Service in Manitoba, which Manitoba Health opened to reduce the costs of misdiagnosis and delayed diagnosis.
- Education – Health care providers need accurate, up-to-date, education on TBDs so they can recognize and treat all stages of Lyme (acute, early, and late disseminated) and other TBDs.
- Non-Partisan Lyme Disease Task Force – Nova Scotia needs to form a Non-Partisan Lyme Disease Task Force that includes representation by those with lived experience of TBDs.
Our presentation to the PC Caucus was on February 16, 2022. A year has now passed. If the government is working on this issue, patients have not been consulted. Even though a contact in the Premier’s office has responded as best he can, the information that we have received to date has not been specific to our Asks.
Prior to the 2021 provincial election the NS Lyme Advocacy Group sent a list of questions to all candidates. We received a few individual responses, as well as responses from the PC, NDP and Liberal Parties. The PC Party response included good ideas that should have been acted upon after taking power. The PCs committed to establishing an all-party committee “upon forming government” and committed to implementing their Lyme Disease Strategy Act within their first year.
The PC government now says it will not implement the Lyme Disease Strategy Act as it is working with NS Public Health to address the issue. Therefore, the government no longer needs to be “forced” to act. However, part of the Lyme Disease Strategy Act was to include patient groups, who have not yet been included in any discussions.
Fixing health care appears to be a priority for this government. Figuring out how to reduce the burden that TBDs impose on our publicly funded health care system would free up much needed health care resources. It is a missed opportunity to not consult with people with lived experience as many have extensively researched how to improve the situation.
Since 2022, pharmacists can provide a single prophylactic dose of antibiotics after a tick bite. If we had been consulted, evidence would have been presented that this single dose is based upon limited research and is not 100% effective, if effective at all. Since it is not 100% effective, patients should be followed for at least a month after the treatment to ensure that no symptoms appear. This follow-up is not happening. Patient experiences that have been shared since this treatment commenced indicates that many pharmacists are not fully aware of all the criteria that must be met for the prophylactic dose to be given, nor are they aware that if symptoms are present, especially an erythema migrans rash, then treatment must be provided by a doctor.
Nova Scotians must understand that ticks in all areas of Nova Scotia can potentially be carrying disease(s) and that TBDs can cause more than a rash and flu-like symptoms. If not diagnosed and treated quickly, symptoms can multiply and become debilitating and can cause death in some instances. Symptoms vary from person to person depending upon factors such as where the bite occurred on your body, the infections carried by the tick, underlying health conditions, and the time-period between the bite and diagnosis. It is important to note, as well, that although the bull’s-eye is the more recognized version of the erythema migrans rash, it is actually seen in only a small percentage of cases. As well, many will not get, or see, a rash. It is also important to note that there is presently no Lyme test that can definitively tell whether you have Lyme, or not. A negative test does not mean that you do not have Lyme or another tick-borne disease.
Due to the small size of the ticks and their ability to produce a numbing agent in their saliva, many people do not realize that they have been bitten. The GeneralSymptom Questionnaire-30 (GSQ-30): A Brief Measure of Multi-System SymptomBurden in Lyme Disease is a valuable tool for you and your healthcare provider to explore the possibility of TBDs.
The cost to the NS health care system for the first Lyme disease test is $8.21 and the second test, to confirm, is $5.67. This cost is minimal compared to the high cost of treating patients who have a delayed diagnosis or who are misdiagnosed. Even though testing is not 100% accurate, and misses a number of cases, Lyme testing should automatically become part of the screening when doctors don’t know what is wrong with a patient. This could identify some Lyme infections.
We ask all Nova Scotians to take this issue seriously and speak to your elected representatives.
For information, please contact the NS Lyme Advocacy Group, via Donna Lugar, firstname.lastname@example.org.
3 thoughts on “An Open Letter to All Nova Scotians from the NS Lyme Advocacy Group”
I have family members and close friends with Lyme disease and had they been treated sooner instead of oh we don’t know what it possibly could be because we are not equipped to check for Lyme so let’s send you off to a specialist which will takes months and months to get into before you finally get any help or support and with minimal affectiveness I would love to see more here for those I care about who currently have their diagnosis finally both more than a yr later for 1 family member and over 5 yrs for a close friend because it took so long the best treatment for Lyme is with very quick diagnosis and medication within what a week or something….. please there is such a high chance of more of my close family and friends getting Lyme that I think it’s everyone’s right to have access to best possible diagnosis ans treatment as quickly as possible when it’s an emergency. I would also consider it to be an emergency because of the serious consequences when not treated properly ans quickly. It will be putting more strain on the government because they are both no longer able to work and require so much treatment and way to much travel time and seeking someone who can actually help them. My uncle who has traveled down to the states just for some relief has been living with it for nearly 10 yrs and cannot work and needs to spend so much money on pills and pills t9 try and get any relief his mental health is at its lowest at the moment and is at his breaking point as we all worry about him and how he can get some relief from the pain as well as the weakness.
Hi Charlotte. Thanks for your response. I thought I had responded yesterday, but I no longer see it. Sorry about that. Unfortunately, your story sounds very familiar. It is a way too common refrain by Nova Scotians, and many Canadians. Please reach out to your elected representatives and tell them this story. It’s heartbreaking and may make them take notice.
If Public Health is considered the centre of excellence for TBDs, and the NS Public Heath medical officer has publicly referred to those of us that were denied a diagnosis and go elsewhere for long term antibiotic treatment as a “cult”, how is that going to be productive? I feel for you and your efforts stalling out, but it’s the only way to change the current ignorance and prejudice by the medical community about people with late disseminated TBDs. I admire your perseverance.