It has recently come to my attention that several high level organizations to do with health care in Canada have included links on their websites that include questionable information, or entirely leave out information. For instance, the Association of Medical Microbiology and Infectious Diseases Canada (AMMI) links only two Lyme Guidelines on their website, those of the Infectious Diseases Society of America (IDSA), and the National Institute for Health and Care Excellence (NICE). They have not included the Guidelines prepared by the International Lyme and Associated Diseases Society (ILADS).

AMMI has also listed some “reliable sites that can help answer your questions” which includes that of the American Lyme Disease Foundation Inc. (ALDF). ALDF is in itself questionable (https://www.lymedisease.org/lymepolicywonk-bogus-grassroots-groups-whos-who-and-whats-what-with-the-american-lyme-disease-foundation-aldf-2/) but, of even more importance, is the fact that there is a link on the ALDF website to LymeScience.org.

LymeScience “is an independent, volunteer-run patient advocacy and science education web site with a mission of sharing reliable and helpful resources about Lyme disease.” No names, affiliations, expertise, or experience are noted anywhere on the website. The website seems to have been formed to give an outlet for all things associated with the IDSA and to malign doctors, researchers, patients, and advocacy groups associated with Lyme and tick-borne diseases. The site goes so far as to say that “The easiest way to determine if an entity is dedicated to dangerous chronic Lyme pseudoscience is if it refers patients to predatory “Lyme literate” doctors or other practitioners of unscientific medicine” and goes on to list a number of organizations that they “recommend avoiding”. This list basically includes anything with Lyme in its name (except ALDF) and any university that accepts research funding from Lyme organizations/patients. The following are just a few groups/associations LymeScience recommends avoiding:

• Global Lyme Alliance
• LivLyme Foundation
• StandforLyme
• LymeHope
• The Steven & Alexandra Cohen Foundation
• Canadian Lyme Disease Foundation (CanLyme)
• Canadian Lyme Science Alliance (CLSA) and Canadian Lyme Consortium
• Caudwell LymeCo.
• Brian Fallon’s Columbia University Lyme and Tick-Borne Diseases Research Center
• Ying Zhang’s group at Johns Hopkins University
• Eva Sapi’s University of New Haven Lyme Disease Research Group
• The Dean Center for Tick Borne Illness
• Mount Allison University Lyme Research Network
• G. Magnotta Lyme Disease Research Lab at University of Guelph
• The group at Duke University formerly associated with Neil Spector

As an FYI, the above were taken directly from the website and are typed exactly as they were. They even diminished, in my opinion, the doctors that are mentioned by not including their title.

LymeScience’s biggest “fight” appears to be with the use of “Chronic Lyme”, something which I also take some issue with. Chronic Lyme is not an actual diagnosis but is used by many to describe a number of things, such as those that are chronically ill due to an undiagnosed or misdiagnosed case of Late stage Lyme. It is also used by many with ongoing symptoms after treatment, although some would call this Post-Treatment Lyme Disease Syndrome.

There is considerable research now available to suggest that Borrelia burgdorferi can persist after treatment; however, if you listened to those responsible for LymeScience, you would not accept any of this research as funding sources for this research may include Lyme organizations/patients. Is LymeScience actually suggesting that researchers are being swayed by those that have supplied the much needed funding? I guess if you are an anonymous group you can say pretty much whatever you want, and they do.

Those of you in Nova Scotia may also recognize the name LymeScience from a retweet that our Chief Medical Officer, Dr. Robert Strang, posted in January, 2019, and the backlash that followed. Unfortunately, it’s quite common for those in the health field to belittle chronically ill patients that believe that they might have Lyme and tick-borne diseases. Where is that attitude coming from? The top?

If AMMI is ultimately linking to this group, and the federal government, as well as at least some provincial governments, are linking to AMMI, is this not something everyone should be concerned about? Shouldn’t those that are looked at as our “experts” on Lyme and tick-borne diseases in Canada be required to review all research, not just that which fits with their preconceived ideas/opinions?

As those of you that have read my earlier blogs know, I frequently refer to the book “Conquering Lyme Disease” which was written by Dr. Fallon, and others, at the Columbia University Medical Center. Of the many books on Lyme that I have read, I found this one totally unbiased. It looked at all aspects of this issue and didn’t lean toward one way or the other. However, I was told by a Canadian Lyme disease “expert” that he hadn’t read the book because it was differing opinions.

Nothing about Lyme and tick-borne diseases is black and white. There are numerous shades of greys. Yes, there are many differing opinions and yes, some may be questionable; however, if you are deemed an “expert” you should at least be cognizant of all the information that is now available and you should absolutely not be linking to sites that degrade those that are suffering and trying to help others, and themselves.

During a Lyme Support Group gathering recently, it 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 a Director of the Canadian Lyme Disease Foundation and the NS CanLyme Representative. He dealt with many calls over the years before stepping down in 2012 (if I recall correctly). 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. I took over as the NS CanLyme rep in late 2015, with Dr. Murray remaining as a Director on the Board.

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 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:

• CanLyme YouTube Channel – https://www.youtube.com/channel/UCbvRlKgYPsuQuK9coZKDoiw
• Government of Canada – Lyme Disease in Canada – A Federal Framework – https://www.canada.ca/en/public-health/services/publications/diseases-conditions/lyme-disease-canada-federal-framework.html
• Synopsis: Lyme Disease in Canada – A Federal Framework – https://pubmed.ncbi.nlm.nih.gov/29770048/

The following two links give a different perspective from Lyme advocates/patients, and will give a brief look into what/who we are dealing with.

• AMMI Canada’s Position Statement – https://pubmed.ncbi.nlm.nih.gov/29770048/. I will be discussing AMMI in a bit more detail in my next post. AMMI is not a friend of Lyme advocates/patients, for a number of reasons.
• “Making Lyme Disease Law: The Role of Patient Advocacy in Health Law and Policy” – https://healthydebate.ca/opinions/role-patient-advocates-lyme-disease-policy-limited

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, we are told that Lyme disease is being dealt with appropriately.

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; many 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.”

Unfortunately, with COVID ongoing, there has been a hold on this petition. This delay has resulted in the newly updated IDSA Lyme Guidelines being posted – https://www.idsociety.org/practice-guideline/lyme-disease/ – and the wording of the caveat noted in the guidelines has changed to include some additional wording, such that our petition will no doubt have to be updated once COVID is no longer an issue. The new wording is:

“Disclaimer

It is important to realize that guidelines cannot always account for individual variation among patients. They are assessments of current scientific and clinical information provided as an educational service; are not continually updated and may not reflect the most recent evidence (new evidence may emerge between the time information is developed and when it is published or read); should not be considered inclusive of all proper treatments methods of care, or as a statement of the standard of care; do not mandate any particular course of medical care; and are not intended to supplant physician judgment with respect to particular patients or special clinical situations. Whether and the extent to which to follow guidelines is voluntary, with the ultimate determination regarding their application to be made by the physician in the light of each patient’s individual circumstances. Although IDSA, AAN, and ACR makes every effort to present accurate, complete, and reliable information, these guidelines are presented “as is” without any warranty, either express or implied. IDSA, AAN, and ACR (and its officers, directors, members, employees, and agents) assume no responsibility for any loss, damage, or claim with respect to any liabilities, including direct, special, indirect, or consequential damages, incurred in connection with these guidelines or reliance on the information presented.”

On June 25, 2020, we held the first NS Lyme Advocacy/Activism meeting (via Zoom). There were five people in attendance, with four others interested in being involved. However, more people would be helpful, especially males and youth/young adults. We need to show that this issue can affect anyone, and everyone. If anyone is interested in learning more about this group, please reach out to me. I would love to hear from you.

A second meeting of the NS Lyme Advocacy/Activism group was held on November 26, 2020. The main purpose of the meeting was to chat with Marnie LePage of Manitoba Lyme to learn about what Manitoba is doing regarding Lyme and Tick-borne diseases. It was a very informative meeting and it was great to learn about the Manitoba Lyme Clinic and how well Manitoba Lyme and the Manitoba Health Association work together.

The next meeting of the NS Lyme Advocacy/Activism group will be held on February 25, 2021. We now have 14 interested people, but hope to continue to build. More on this meeting after it happens.

In July of 2020, I became a Global Lyme Alliance Lyme Education Ambassador. Although the Global Lyme Alliance is predominately a US organization, I felt that this affiliation would help increase my knowledge and expand my networking capabilities. I hope to continue my affiliation with the Canadian Lyme Disease Foundation, with any monies that I can fundraise going to them.

Through my involvement in Lyme Disease education and awareness in Nova Scotia, I, as well as several other Lyme advocates/patients across Canada, have been asked to participate in the Patient Advocate Consultation for the Canadian Association of Schools of Nursing’s (CASN) Climate-Driven Vector-Borne Disease project. It has been an interesting undertaking to date and we are hopeful that our feedback is being heard and will be incorporated in this educational e-resource for nurses.

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!

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.

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.

Although ticks can be active any month of the year, depending upon the temperature, May is generally known as Lyme Disease Awareness Month around the world. Unfortunately, with COVID-19 filling the minds of health care professionals, and just about everyone else, very little awareness information has made its way to the public this May.

Ticks can carry a number of illnesses, some of which can be transmitted in a few of minutes. Therefore, awareness and prevention is key in order to top ticks from biting.

I have been hearing from many that it looks like a bad year for ticks, so everyone needs to remember that proper tick bite prevention methods are needed now more than ever, especially as some symptoms can be similar to those of COVID-19. Although some tick bite prevention methods are a personal choice, such as picaridin/icaridin instead of DEET, natural versus chemical, or wearing light coloured clothes with socks tucked in pants, the best defence is a multi-pronged one.

For those that spend a considerable amount of time outdoors in high risk tick areas, permethrin treated clothes should be investigated as an addition to your prevention routine. Unfortunately, we only have a small selection available in Canada thus far (at Mark’s), but some US suppliers will now ship to Canada.

Even with the use of repellents, wearing treated clothing, etc., tick checks are very important and should become a regular part of your daily routine. As ticks like to hide in warm, moist, hard to see, areas you will need help from a partner, or a handheld mirror. Preferably a magnifying mirror, as the ticks can be very small. I also have heard quite frequently from people who found them behind the ears, on the scalp, under the band of a bra or at the waist band of pants.

If you do find an attached tick, don’t panic and pull it off with your fingers. This can force it’s stomach contents into you. Instead, make sure you remove it correctly. Use fine-tipped tweezers, a proper tick removal tool, or even string. There are various YouTube videos showing the proper methods. Do not squeeze the body; spin it around with a Q-tip; smother it with vaseline; etc., as it may cause the tick to regurgitate or break off in your skin.

Once you remove a tick, clean off the bite site with soap and water or an alcohol-based sanitizer. Put the tick in a container, mark the date and the location of the bite on your body, and where you think the tick was picked up. Then put it in your freezer as you may want to have it tested or have the type verified.

Depending upon the type of tick, level of engorgement (how long it has fed), and what area you were in when bitten (high risk?), you may want to have the tick tested. If you request treatment based on any of the above, especially the level of engorgement, I have reservations about the prophylactic treatment that some doctors will prescribe. As with all things Lyme, this treatment is controversial. Some say that it may prevent a rash from forming, but there isn’t sufficient information to confirm that other symptoms will be prevented.

Although the bull’s-eye version of the erythema migrans (EM) Lyme rash is the one that is better known, other types of rashes are actually more common – https://www.cdc.gov/lyme/signs_symptoms/rashes.html. As well, apparently approximately 20% of people will not get a rash. It is also harder to see a rash if you have darker skin. The rash on darker skin may appear more like a bruise. Without any visible signs of infection, such as a rash, it can be harder to obtain a diagnosis and treatment.

Testing can also be problematic. The Lyme ELISA can result in false positives AND false negatives – 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#a1. If you receive a positive ELISA, your blood is sent to the Winnipeg Microbiology Lab so that a Western Blot test can be undertaken. If your test comes back negative, typically nothing further is done. Unfortunately, at this point most doctors will tell you that you do not have Lyme. The reliance on a test, which is not 100% accurate, is very concerning and I believe results in a lot of misdiagnosed, or undiagnosed cases.

Educate yourself as many health care professionals are lacking in this regard.

Prevention is key!

 

 

 

 

 

 

 

 

 

 

It really hit home this week that I’m a terrible patient! Although I have been plugging away for years trying to get healthier, I haven’t been doing all that I could, and should, be doing.

The main thing is that I don’t follow any specific diet, even though I tell everyone else to eat clean and eliminate sugar, gluten and dairy and test for any other food sensitivities. Improving your diet will go a long way towards boosting your immune system so that your body can fight infection. That, along with reducing stress; getting good quality sleep; and doing what exercise you are able to, all should go hand in hand with any treatment protocols you are following. Even if you are not on any treatment protocols at the moment, these changes will help.

I always suggest to people to keep a daily journal so that you can scope out any issues with food fairly quickly. You don’t want to stop everything all at once as you may not have an issue with some of the things that bother others. As is the case with just about everything Tick-borne disease related, however, we are not created equal when it comes to food sensitivities. Although I always recommend it, I don’t do it myself. Numerous times I have purchased a book to do just that. I have even put it in a handy location right beside my bed so I could write in it before I go to sleep. It doesn’t seem to work.

Nothing seems to work!

Why am I such a poor patient? I don’t want to remain sick the rest of my life. I want to get better. I really do! What’s going on?

Is there something preventing me from following through on all the things I should be doing?

Perhaps that is why some of us remain ill. We are our own worst enemies. We are not following all of the great advice that is now readily available on social media, and elsewhere. We are not doing what we should be doing.

I know I am personally afraid of the dreaded “Herx”. I don’t want to feel worse before I feel better. I am able to function at a reasonable level now and don’t want to end up back in bed like I was before.

This is something I have to personally wrap my head around and maybe it’s time I chat with someone that can help me figure it all out. It’s not a bad thing to speak to a professional. Actually most of us should have someone that we can talk to as there are a lot of issues that could be holding us back.

Don’t be afraid to reach out to others. Speak about your concerns, worries, pain, and overall well-being. It will help, as long as you trust that person and that person is open to all that is going on with you. You may have to check out a few but it will be worth the effort.

Don’t bottle it up! Like I do!

Be a better patient!

And, yes, I’m speaking to myself!

There is a considerable amount of misinformation about Lyme and Tick-borne diseases but there are a few things that I hear about frequently. I thought I would try to clear some of the issues up, as much as possible.

Bull’s-eye Rash:

Although the bull’s-eye rash is a telltale sign of Lyme, many do not realize that this particular rash is only one of a variety of erythema migrans (EM) rashes possible. In actuality, only a small percentage of people will get this particular manifestation.

An EM rash may (approx. 20%, or more, do not get any rash) show up three to 30 days after a bite. The rash generally expands slowly over days and can spread to 30 centimetres across. It’s typically not itchy or painful but might feel warm to the touch. An Erythema migrans rash is one of the hallmarks of Lyme disease. (Mayo Clinic)

The EM and bull’s-eye rashes are frequently used interchangeably as if they mean the exact same thing resulting in many people (doctors and the public) thinking that they do not have Lyme because their rash is different, or they didn’t have one.

To add to the equation, those with darker skin may not see the rash, leaving even more people without the benefit of the “hallmark” of Lyme disease.

ELISA/Western Blot Lyme tests:

I frequently hear that if a Lyme test comes back negative, people are told by their doctors that they do not have Lyme. According to a Canadian Adverse Reaction Newsletter (Volume 2 – Issue 4), published by the Government of Canada in October 2012 (and verified to be accurate as of May, 2019), the Lyme disease test kits have sensitivity and specificity limitations and should not be the primary basis for making diagnostic or treatment decisions – 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#a1.

The Newsletter goes on to state that there are at least three reasons for a false-negative: (a) a slow antibody response early in the course of the disease, (b) genetic diversity of Borrelia burgdoferi and (c) treatment with antibiotics.

In the book “Conquering Lyme Disease”, by doctors at Columbia University Medical Centre, other reasons for a possible false-negative are noted.

In other words, just because your test is negative does not mean you do not have Lyme or a Lyme-like illness.

Case Numbers:

The confirmed/probable case numbers used in Nova Scotia, and Canada, are thought of as being fairly low and therefore many are not overly concerned about the possibility of contracting Lyme or Tick-borne diseases. However, research has recently been undertaken on what the true numbers may be in this country. Of course, as is the case in all things Lyme, there is conflicting information. However, both research documents do agree that there are more annual cases than the confirmed/probable case numbers would suggest.

The first research published – https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6315539/  suggested that only 1 in 10 cases are reported. After this research was published, another document was prepared in response that suggested that although the “precise degree of under-reporting is unknown”, it is not as high as the first research document would suggest – https://bmcpublichealth.biomedcentral.com/articles/10.1186/s12889-019-7219-x.

From my own personal experience, I know that many cases are not included in the confirmed/probable case numbers, mine included, because many people are clinically diagnosed but may have had more subjective clinical evidence rather than objective clinical evidence. With my over 40 symptoms, except for an erythema migrans rash (at least I didn’t see one), swollen knees or other visible, easily confirmed symptoms, my doctor still clinically diagnosed me with Tick-borne diseases. I had a multitude of symptoms, affecting numerous systems, and lived and traveled in a highly endemic area. That is the way Lyme and Tick-borne diseases is supposed to be diagnosed.

Whether the true annual numbers are three times higher, 10 times higher, or more, there are enough cases that those in known endemic areas, and elsewhere, should undertake regular preventative measures and consider Lyme and Tick-borne diseases when health issues arise that are not easily diagnosable. Even then there is a risk of a misdiagnosis as many symptoms overlap and if you have a number of symptoms that do not fit under your particular diagnosis, or you have been diagnosed with a number of auto-immune illnesses, consider the possibility of a Tick-borne disease, or two.

Educate yourself as many health care professionals are lacking in this regard.

The first Bridgewater Lyme Conference has come and gone. Hundreds attended the two day event held on November 16 and 17, 2019, in the Bridgewater Cineplex, Bridgewater, Nova Scotia.

The Conference was the first of its kind in Nova Scotia. All stakeholders were invited to participate and there were presentations by doctors, researchers, patients and alternative/complementary health care providers.

The Conference was developed to seek common ground among patients, the medical community, and the research community. It provided diverse perspectives on the prevention, diagnosis, and treatment of Lyme and Tick-borne diseases.

The mandate for the newly formed not for profit society, the Lunenburg Lyme Association (LLA), is to build awareness about the prevention, symptoms, diagnosis and treatment of Lyme and Tick-borne diseases, with a focus on the needs of Lyme patients. The ability for physicians, Lyme researchers, scientists and others to share and respond to diverse perspectives on the complexity of the disease; and to seek common ground among Lyme disease patients and the medical community is a key component of their mandate.

The two-day event included a morning just for health care professionals and a morning for the general public. Providing two sessions, with minor changes in presenters/presentations, was seen to be beneficial for all.

There was a considerable amount of press prior to and after the event which can be found in a number of places, including on the Lunenburg Lyme Association Facebook page. The following are just a few:

• https://globalnews.ca/video/6172278/newly-formed-not-for-profit-seeks-common-ground-on-lyme-disease
• https://www.cbc.ca/listen/live-radio/1-27-information-morning-ns/clip/15746640-we-shouldnt-take-a-watch-and-wait-approach-to-tick-bites-says-lyme-expert
• https://atlantic.ctvnews.ca/lyme-disease-conference-held-in-bridgewater-1.4689797

The Conference was taped and the videos of some of the presentations can be found on the “Faces of Lyme Lunenburg” YouTube channel – https://www.youtube.com/channel/UCO3Bd0xDKwUcoBMGyqoDsUg.  A few of the presentations are still not posted as the presenters have not yet given approval to do so.

Attendees were also asked to complete a short survey after the event and the responses have, for the most part, been very positive.

I am very happy to be a part of the Lunenburg Lyme Association as an Advisor. This Association will be ensuring that there will be legacy pieces as part of the conference, including two videos on prevention which are also available on the “Faces of Lyme Lunenburg” YouTube channel.

There is also already discussion on whether another event will take place. Here’s hoping!

What is “Chronic” Lyme? This is a question that many people have asked, yet there isn’t just one answer. It means many things, to many people.

When I think of “Chronic” Lyme, I think of people that have gone weeks, months, or years, without a diagnosis, or any treatment, and are chronically ill. I also think of those that were treated, but still have considerable symptoms that make them chronically ill. We don’t yet know why these people are still ill but it could be because the treatment started too late, there are other issues at play such as co-infections, or the immune system has been impacted. Many of these people are so ill that they can no longer go to school, work, or sustain any quality of life. When one is chronically ill, and has been for a long period of time, one does not care what it is called, yet many doctors fixate on the name.

Some would refer to people as having Post Treatment Lyme Disease Syndrome but considerable research has determined that Borrelia burgdorferi can survive antibiotic treatment. More research is required in this regard but without the proper funding to be designated for this research, many questions will continue to remain unanswered.

The focus on the name of what chronically ill people have seems to overshadow actually trying to find out how to treat these people and get them well. Many doctors ridicule those that say that they have “Chronic” Lyme. They call them “Lyme Loonies”, members of the “Lyme Cult” and basically treat them with disrespect and show a lack of compassion, or interest, in helping these people. Many patients actually have PTSD because of how doctors have treated them. Many will stop going to doctors or stop mentioning anything about Lyme when they go to a new doctor which can result in procedures or treatments that actually make them sicker.

Here in Nova Scotia, our Chief Medical Officer recently Retweeted a Tweet that said:

“As a former victim of the chronic Lyme cult, I feel it’s pretty important that they stop controlling the narrative around Lyme disease with their pseudoscience and misinformation. They’ve been called a threat to public health for good reason. But it would help to remember not everyone who falls for it is an idiot. The cult is well-funded and only growing. I’d hope most people can see more needs to be done to stop this anti-science movement.”

When this was brought to my attention my blood began to boil as I initially couldn’t believe that the Chief Medical Officer would so blatantly show his disdain for those that try to educate others to the fact that Lyme isn’t just a rash and flu-like symptoms. However, I unfortunately fairly quickly realized that, yes, I could believe he would be this inconsiderate of hundreds, if not thousands, of chronically ill people in this province, as he has been a thorn in our side for many years. Although he has advised that his knowledge of Lyme comes from the “experts”, it is concerning how little he actually knows about Lyme and Tick-borne diseases, yet he appears not open to learning anything from anyone other than his “experts”. Even when Zoologists, Biologists, Doctors, Researchers, Patient Representatives, etc., try to provide him with more up-to-date, science-based, information on the issue.

This same doctor also steadfastly denies that ticks can be active all year if temperatures are favorable. He still refers to “Tick season” as starting in April or May and ending in early Fall. There is considerable research to now suggest otherwise.

I was recently made aware of a Neurologist in this province that asked his patient if he was a member of the “Lyme Cult” when he was asked if all the symptoms that this person has been experiencing for over a year could be attributable to Lyme. The patient didn’t say anything about “Chronic” Lyme. He just wondered if his symptoms could be a result of the tick bite that he had received a year before. Another doctor once said that he wasn’t “convincingly convinced” that Lyme was anything more than a rash and flu-like symptoms, yet it is quite clearly described on the CDC website and the Health Canada website that Lyme can have three stages: Acute, Early disseminated and Late disseminated.

At a recent presentation by two NS doctors about Lyme and an upcoming research project I inquired as to what one doctor thought of the book “Conquering Lyme Disease” by doctors at the Columbia University Medical Centre. He advised that he hadn’t read it and that it had differing opinions. However, when it comes to past research done by one of the co-authors, Dr. Brian Fallon, regarding Lyme testing at private labs, this same doctor refers to the research quite frequently, even though there have been improvements to at least one lab referred to since that research was undertaken. There are a considerable number of “differing opinions” when it comes to Lyme and Tick-borne diseases, that’s why you need to read more than one article or peruse more than one website.

This same doctor that noted “differing opinions” has advised that there are over a million people in Canada with Medically Unexplained Symptoms (MUS). How many of these people could be chronically ill because of a tick bite which was never seen and subsequently never diagnosed? Testing is not 100% accurate for Lyme and doesn’t cover other Tick-borne diseases. What are we missing?

It’s time for people to really look into the issue. There is research being published on a regular basis that questions the status quo. There are groups of researchers in the US, Canada, Europe, and elsewhere, working together in an effort to come up with better tests and treatments and trying to answer the many questions that are, even after all these years, still unanswered like can Lyme be “chronic”.

In the meantime, prevention is key!

 

 

 

Around the world, May is generally known as Lyme Disease Awareness Month. The information starts flying fast and furious at this time of year and, sometimes, it can be incorrect, especially as it pertains to tick removal. This is the time of year when a variety of different recommendations make the rounds on social media, and elsewhere, some of which can actually result in any pathogens that the tick is carrying being transmitted to whomever, or whatever, the tick is attached to.

Therefore, one should stay with the tried and true, safe, methods, such as utilizing fine-tipped tweezers, or a proper tick removal tool, and getting as close to the skin as possible, without squeezing the body of the tick, slowly pulling straight out allowing time for the tick to retract its barbs. The tick has also secreted a cement like substance to help hold it in place so if you pull it out too quickly, you will pull out a lot of skin. There are other safe methods as well which can be found on the Canadian Lyme Disease Foundation (CanLyme) website –  https://canlyme.com/lyme-prevention/tick-removal/.

A lot of information also tends to go around showing the bull’s eye rash, which is the better known Lyme rash. However, only a small percentage of people actually get this type of rash. Other types of erythema migrans (EM) rashes are more common and it’s also possible not to have a rash at all. If you are one of the “lucky” ones though, a growing bull’s eye rash is a definitive sign of Lyme, no testing required, and treatment should start immediately. Don’t let anyone tell you otherwise!

Another piece of info that you may hear is that a Negative ELISA means you don’t have Lyme. This is incorrect! There can be several reasons for a False Negative ELISA. Most doctors are aware that if the test is given too soon after the bite, there is a good chance the test will result in a False Negative because antibodies have not had a chance to build. However, they may not know that antibiotic use after the bite, or a different strain of Borrelia, can also result in a False Negative. There is some indication that later stages can also result in False Negatives. Do not take a Negative test to mean you don’t have Lyme!

Unfortunately, many in the health care field are still lacking in even the most basic of information on Lyme and Tick-borne diseases so one must do their own research and take information with you for appointments. There is a lot of evidence-based literature now available and more research, Case Reports, and information is being posted daily. Know where to look for the best quality information and understand that there is quite a bit of misinformation out there.

You know your own body and when it comes to Lyme and Tick-borne diseases, you have to be your own advocate.