An Open Letter to All Nova Scotians from the NS Lyme Advocacy Group

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:

  1. 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.
  2. 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.
  3. 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,