Some Background on Lyme Advocacy/Activism in NS/Canada

During a Lyme Support Group gathering recently, it was hit home that there are many people now struggling with Lyme and/or Tick-borne diseases that are in the dark about the issue. Having been fully immersed in all things Lyme since 2011, I forget that not everyone is at the same stage as me. It’s time to rectify that – a bit anyway. A lot of the info will be Nova Scotia specific. Some Canada specific due to the federal government’s involvement with Lyme in Canada. The information will not be all encompassing, but will give a little background for those new to the topic.

The first reported case of Lyme in Nova Scotia was in 2002. However, Kelly Burke, was the first person to actively investigate Lyme after a bite in 1999 in New Ross, NS – https://canlyme.com/2011/10/13/kellys-story/. As her story became public, more and more people reached out to the Burke’s and CanLyme with similar stories. Kelly’s husband, Larry became the NS CanLyme Representative and dealt with many calls over the years before stepping down in 2014 (if I recall correctly). I took over as the NS CanLyme rep in late 2015. There was a bit of a gap when there was no NS rep.

Since 2002, the number of confirmed/probable cases have generally continued to climb but, of importance to note, those numbers are only a portion of the actual cases. In the last two years, two research papers were published with regard to the actual case numbers in Canada. The first one, entitled “Under-Detection of Lyme Disease in Canada” (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6315539/) was written by Vett K. Lloyd and Ralph G. Hawkins. The second one, entitled “What is the real number of Lyme disease cases in Canada?” (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6599318/) was written by N.H. Ogden, C. Bouchard, M.A. Drebot, T.F. Hatchette, … Both documents note that underreporting is an issue, but they differ as to how much is taking place. The second document notes that “We speculate that approximately one third of cases are reported in regions of emergence of Lyme disease, although prospective studies are needed to fully quantify under-reporting. In other words, when speaking about Lyme cases in Canada, one should always preface the number with the fact that these numbers are only those that were reported. In the US, the number of actual annual cases are generally considered to be at least 10x more.

In 2009, Lyme became a nationally notifiable disease in Canada. According to the “Surveillance of Lyme disease” document on the Government of Canada website (https://www.canada.ca/en/public-health/services/diseases/lyme-disease/surveillance-lyme-disease.html), in 2016 Nova Scotia reported the highest incidence in Canada at 34.4 per 100,000 population, which was 12.7 times the national average.

Bill C-442, “An Act respecting a National Lyme Disease Strategy” received First Reading on June 21, 2012. On December 16, 2014, the “Federal Framework on Lyme Disease Act” received Royal Assent and is now law. Bill C-442 was the first private members’ bill to receive unanimous support. The bill was introduced by Member of Parliament Elizabeth May after speaking to numerous constituents dealing with Lyme and Tick-borne diseases, including Nova Scotia’s very own Brenda Sterling-Goodwin, Lyme advocate extraordinaire.

in 2013, Rob Murray, DDS, joined the Board of the Canadian Lyme Disease Foundation. Since 2013, Dr. Murray has been working diligently to change conditions on the ground for present and future patients in Nova Scotia.

In May of 2016, the Conference to Develop a Federal Framework on Lyme Disease was held in Ottawa. I was fortunate to be able to attend that conference. This conference was mandated by the Federal Framework on Lyme Disease Act. The purpose of the conference was to bring together a variety of stakeholders to develop a framework that would focus on the three areas within the Act: medical surveillance; education and awareness; and guidelines and best practices. There is a considerable amount of information available on-line about the conference, including videos posted on the Canadian Lyme Disease Foundation (CanLyme) website from the three day conference.

You can find quite a bit of information at:

In May of 2017, the Federal Framework was published – https://www.canada.ca/content/dam/phac-aspc/documents/services/publications/diseases-conditions/lyme-disease-canada-federal-framework/lyme-disease-canada-federal-framework-eng.pdf – to much dismay by patient advocates. The document did not take into consideration most of the concerns expressed by patient advocates and many of the stakeholders in attendance at the conference.

On October 15, 2018, it was announced by the Honourable Ginette Petitpas Taylor, Minister of Health, that $4 million would be given to the Pan-Canadian Research Network on Lyme Disease (now called the Canadian Lyme Disease Research Network) – https://www.canada.ca/en/institutes-health-research/news/2018/10/government-of-canada-takes-action-to-address-lyme-disease.html. This also resulted in dismay by patient advocates across Canada as it appeared that the entire Lyme funding was being given to a single group whose members consisted of a number of well-known people across Canada who have been vocal about their thoughts/opinions about Lyme and whether individuals are actually dealing with Lyme and Tick-borne diseases. It was felt that any research undertaken by this group would result in more of the same. More on the Canadian Lyme Disease Research Network can be found on their website – https://www.clydrn.ca/.

Another Lyme research network also exists in Canada. The Canadian Lyme Consortium – http://www.clymec.ca/ – was formed to seek funding assistance from the federal government. Unfortunately, all funding went to the Canadian Lyme Disease Research Network, rather than a portion going to both groups and to others within the country undertaking research. The Consortium’s membership consists of researchers from four universities in Canada, as well as clinicians and representatives of the patient and advocacy communities.

In 2017 the “Ticking Lyme Bomb in Canada” petition (https://www.change.org/p/minister-hajdu-ticking-lyme-bomb-in-canada-fix-canada-s-lyme-action-plan-now?) was started by Sue Faber and Jennifer Kravis of LymeHope. To date, the petition has over 86,500 signatures and 14,000 comments from people all across Canada. The petition has not been closed as very little has changed since the petition was started to help those struggling with Lyme and Tick-borne diseases. If you have not done so already, please check out the petition, sign, and share. There is also a considerable amount of information on the site.

Since 2002, various members of the provincial government have stood up in the Nova Scotia Legislature and requested that Lyme be given serious consideration. To date, it appears that it is only those people not in power that speak up about the issue. History suggests that those same people stop discussing the issue once their party is in power. For instance, prior to becoming Premier, Darrell Dexter raised the issue, more than once, if I recall correctly. In particular, as Leader of the Opposition in October, 2005, he gave notice to move the adoption of Resolution No. 4916 which stated, in short, “Therefore be it resolved that the minister review how health officials address the real threat Lyme disease poses to the well-being of the people of this province, and that the Canadian Lyme Disease Foundation be included on the Lyme Disease Working Group to assist in preparing a plan of action on how this province intends to proceed to deal with the disease.” I believe the Lyme Disease Working Group he refers to is what is now known as the “NS Zoonotic Diseases Technical Working Group”. This group was responsible for developing and implementing the Tick Borne Diseases Response Plan. Although it has been requested, numerous times, to have the patient perspective represented on this Working Group, there has not been any to date. It wasn’t just the NDP though. All parties at some point have spoken about the issue when not in power. Once in power, everything’s good with Lyme disease.

In October, 2014, Bill 41, the Lyme Disease Strategy Act, received First Reading. This Bill was introduced by Tim Houston, MLA for Pictou East. Second reading of this bill was undertaken on May 6, 2015. A very interesting discussion/vote ensued. It can be found in the NS Legislature Hansard notes. I would actually suggest to everyone that you search through the Hansard notes for all discussions concerning Lyme disease. They are very enlightening. It appears that this bill did not go any further at that time.

On November 27, 2015, a petition with 2,349 signatures was tabled in the NS Legislature by Tim Houston. The petition had five Asks:

  1. Provide Nova Scotians access to Doctors trained to clinically diagnose all stages of Lyme disease, which is recommended by Health Canada, rather than relying on the ELISA test which has sensitivity and specificity limitations (https://www.canada.ca/en/health-canada/services/drugs-health-products/medeffect-canada/health-product-infowatch/canadian-adverse-reaction-newsletter-volume-22-issue-4-october-2012.html)
  2. Protect Doctors that clinically diagnose and treat patients until they are symptom free from prosecution by the College of Physicians and Surgeons. Doctor’s hands are presently tied by the College and this has been proven to be harmful, detrimental and even fatal to the residents of Nova Scotia. Many US States have enacted laws in this regard.
  3. Request that the Minister of Health meets immediately, and at least once annually thereafter, with Lyme Patient Advocates. They are the eyes and ears regarding Lyme Disease in Nova Scotia.
  4. Undertake a year round awareness campaign such that ALL Nova Scotians become knowledgeable about ticks, their locations (everywhere), what diseases/infections they can carry, how to prevent being bitten, how to properly remove, how to landscape to prevent, etc.
  5. Ensure that an Active Tick Surveillance Program is being undertaken as per the “Tick Borne Diseases Response Plan” and that residents have easy access to this information.

Unfortunately, due to Ask #2, the petition was unable to be tabled. The ruling was based upon the fact that “O’Brien and Bosc states on Page 1167 that matters that properly belong before a tribunal may not be made the subject of a petition to the House.” “The College of Physicians and Surgeons falls within the types of bodies referred to in O’Brien and Bosc.”

On April 4, 2019, Bill No. 137, “An Act Respecting a Lyme Disease Strategy for Nova Scotia” was introduced by Tim Houston, MLA for Pictou East. It appears that this bill went no further than First Reading.

For many years, Lyme advocates in this province have been trying to change the dialogue about Lyme and Tick-borne diseases and to engage with members of public health and government in an effort to ensure that health care professionals are better educated and that the general public is aware of the issue. They have had letter writing campaigns; have written numerous Letters to the Editor to a variety of NS publications; they have been interviewed on radio and TV and for print articles; they have met with the sitting Minister of Health (only one sitting Minister of Health has agreed to meet to date as far as I know); the Chief Medical Officer of Health; various staff members of the Department of Health and Wellness; have met with politicians and provided MLA’s, MP’s, and Senator’s with an abundance of information on ticks, Lyme and Tick-borne diseases; given presentations; held conferences; held awareness events; etc. Even with all that, very little headway has been made.

One of the reasons little headway has been made, in my opinion anyway, is that many of those that speak out are women. Most are women of a certain age. I feel that we are sometimes not listened to because it is felt that we are hysterical; menopausal; looking for attention; or bored. At one meeting I was in with the Minister of Health, we brought a 26 year old female who had been diagnosed with Lyme carditis. It felt like the interest in the room rose significantly when she spoke. It also appears that when a male occasionally speaks about the issue, they also seem to be given more credence. What this province needs, again, in my opinion, is more young people and males to start speaking up and becoming involved in Lyme advocacy and activism. We need to show a broader demographic of affected individuals. I would love to hear from you if you are interested.

There have been at least four Lyme conferences that have been held by Lyme advocates. One in New Glasgow, two in Halifax, and one in Bridgewater. All conferences had presenters from outside the province, including practicing physicians, university researchers, Lyme advocates, and authors. The 2018 Halifax Lyme Conference and the Bridgewater Lyme Conference both have videos available for viewing on YouTube at “Nova Scotia Lyme Awareness” Playlists – https://www.youtube.com/channel/UCe2yM3BPfLmlUMCM493GC1w/playlists.

Since September, 2017, Lyme advocates from across Canada have been in consultation with the Public Health Agency of Canada, about issues regarding ticks, Lyme and Tick-borne diseases. We have sat at the table, participated in webinars, and have been asked for our advice on a variety of issues. Although a few minor improvements have been made, it sometimes seems like one step forward, and then two steps back, is the norm.

In early 2020 another attempt was made on a petition to be tabled to the NS Legislature. It was felt that the petition would be tabled in the fall of 2020, given several months to obtain signatures. Of course, with the advent of COVID-19, the opportunity to obtain signatures has been severely restricted. Unless restrictions open up such that a large number of signatures can be obtained, the petition will no doubt wait until 2021. The new petition is similar to the earlier one, but no longer has the Ask that was in question.

The Asks are:

  1. Provide Nova Scotians with reasonable access to a Doctor(s) fully trained to clinically diagnose, as recommended by Health Canada, all stages of Lyme and Tick-borne diseases. At present, inadequately trained physicians, feeling unfamiliar with the range of both objective and subjective Lyme symptoms, rely on the ELISA/Western Blot tests, which misses a large number of cases annually.
  2. Undertake a year round awareness campaign, including signage, such that ALL Nova Scotians and visitors to the province have the opportunity to be informed about ticks, their locations, what diseases/infections they can carry, how to prevent being bitten, how to properly remove, how to landscape to prevent, how to get diagnosed/treated, etc.
  3. Ensure that Nova Scotia has a Tick Identification Program and a Tick Testing Program within the province and that the Tick Surveillance Program is being undertaken as per the “Tick Borne Diseases Response Plan”. Tick testing should include more than just Lyme and should include all species of ticks that bite humans/pets.
  4. Ensure that information is readily available advising Nova Scotians that a negative ELISA does not necessarily mean that you do not have Lyme disease.
  5. Include in the “Guidance for Primary Care and Emergency Medicine Providers in the Management of Lyme Disease in Nova Scotia”, the following statement contained in the Infectious Diseases Society of America (IDSA) Lyme Guidelines, which the NS Infectious Diseases Expert Group recommends for treatment: “It is important to realize that guidelines cannot always account for individual variation among patients. They are not intended to supplant physician judgment (sic) with respect to particular patients or special clinical situations. The Infectious Diseases Society of America considers adherence to these guidelines to be voluntary, with the ultimate determination regarding their application to be made by the physician in the light of each patient’s individual circumstances.”

As I do with the Lyme Information document that I wrote a few years ago, I will continue to update this one with information as I remember it or with new things that occur. This document was prepared for a couple of reasons:

  1. To bring new people somewhat up to speed on what has been happening; and
  2. To help come up with a different strategy(s) to finally move this issue forward as what we have been doing to date has not been enough.

Here’s hoping!

COVID-19 in the Lyme World

I’m sure I’m not the only Lyme advocate to be closely watching COVID-19. It appears that there are quite a few similarities between COVID-19 and Lyme disease, such as: listing only select symptoms (although symptom list is growing); only giving tests to people with certain symptoms; false negative tests; disputes on treatment; some people having the virus but not having symptoms; people with weakened immune systems having worse symptoms; lingering symptoms after treatment; and people dying of underlying issues, exacerbated by COVID-19.

Oh, and a vaccine Is being developed, yet we are still learning more about the virus and we cannot yet say, with certainty, who isn’t already carrying COVID-19. It has been suggested that the virus has already mutated in some areas so we also do not know if a vaccine would work for future mutations.

As well, the use of “confirmed and probable” cases raises a red flag. We know that with Lyme a significant number of cases are being missed. This is even more concerning with COVID-19 because it can apparently be transmitted to others quite easily so those with a false negative or asymptomatic could be infecting many others while under the mistaken belief that they are fine.

However, the parallels end there. With COVID-19, doctors seem to have some flexibility regarding treatment, dependent upon symptoms. If a patient is symptomatic, yet the test is negative, doctors can, and will, treat. If one treatment isn’t working, another can be tried. A significant amount of money has been designated to find better, quicker, testing methods and appropriate treatments.

With Lyme, doctors are expected to follow the same treatment guidelines, no matter what symptoms, or what stage. If the test comes back negative, patients are told they do not have Lyme, even if symptoms would suggest otherwise. If treatment doesn’t eliminate symptoms, patients are told they have Post Treatment Lyme Disease Syndrome and that their Lyme is gone.

Most are concerned about COVID-19 and will do what is necessary to prevent transmission, although there are those that seem to believe it’s not an issue. It seems that the only people worried about Lyme and Tick-borne diseases are those dealing with them. Many, including some doctors, believe Lyme doesn’t exist, is a scam, or is nothing more than a rash and flu-like symptoms. Nothing could be further from the truth.

Many deaths are being attributed to COVID-19 with any underlying health issues not being noted. This skews the numbers for COVID-19 and the underlying illnesses. With Lyme disease, the exact opposite is frequently happening. The resultant illnesses, caused due to the ongoing effects of Lyme and Tick-borne diseases on the body, are considered the cause of death.


It’s time to take a serious look at Lyme and Tick-borne diseases in Canada. Patients need to be listened to, not ridiculed and told that their symptoms are all in their head. Doctors willing to help their patients need to be allowed some flexibility in how they diagnose and treat. A standard set of guidelines for an illness that can affect everyone differently, with some experiencing only minor issues, and others being severely debilitated – does not make sense.

On a final note, also of considerable concern to the Lyme community is that COVID-19 has affected the ability for those affected by a tick bite to be diagnosed and treated. As well, those undergoing treatment are frequently seeing medical professionals outside their province/country, or seeing alternative/complementary health care professionals. During COVID-19, many have been unable to continue treatment and are left to their own resources. Others are finding it difficult to obtain a diagnosis because the focus is entirely on COVID-19. With a few similar symptoms, there can also be confusion as to whether you have COVID-19, Lyme, or other Tick-borne diseases. This can delay treatment.

COVID-19 is serious, but Lyme can be as well. We cannot afford to continue to ignore all else while dealing with this present pandemic.

The Lyme World Has Lost A Hero

Yesterday afternoon I learned that the Lyme, and Cancer, world lost a true hero and advocate. When I opened up my computer all my social media was ablaze with the news. It was like a kick in the gut to read that Dr. Neil Spector lost his valiant battle with complications due to Epstein-Barr Virus.

Dr. Spector was the author of “Gone in a Heartbeat: A Physician’s Search for True Healing” which is an excellent book about his search for answers to his health issues and subsequent heart transplant due to misdiagnosed Lyme disease. Those struggling with health issues, and all health care professionals, should read his book. The perspective of a well-respected doctor dealing with Lyme should be eye-opening to all.

The book review states:

“As he recounts his own unorthodox approach to medicine and physician/patient relationships, Dr. Spector encourages readers to never surrender their power to a third party. He tells of courageous patients who served as role models, he conceded that doctors do a disservice to patients when ‘we treat them like statistics,’ and he advocates for educated patients who can make informed decisions collaboratively and not simply follow instructions.”

Having been ignored, minimized, criticized, and thought of as a middle aged, menopausal woman, rather than someone dealing with actual health issues, I can say with certainty that Dr. Spector’s book and he, himself, made me truly understand what I was up against.

I had the opportunity to hear Dr. Spector speak several years ago at a Lyme Conference in Augusta, Maine. I was able to speak to him briefly and have him autograph his book for me. I took the trip to Augusta to specifically hear him speak. It was worth the trip. He was an amazing speaker and human being who worked tirelessly to help others.

Over the last few years I reached out to him a few times with questions which he quickly answered, with detailed information. Reading some of the posts over the last day I realize he did this for many, even though he was still working, researching, speaking, and dealing with his own health issues. Not many people would do that.

I’m still having difficulty processing that he is actually gone and coming up with the appropriate words. Therefore, I’m going to end with a video of one of his interviews that was undertaken three years ago by Fox5NY for their series Lyme and Reason – https://youtu.be/Ja9iflckw-Y.