COVID-19 Should Not Be The Only Thing In The News!

Over the last few months I have sent at least three Letters to the Editor of The Chronicle Herald regarding Lyme and Tick-borne diseases. I am also aware of others that have sent some as well, including one from a research student from Acadia University doing research on ticks, which were also not printed. Why?

At one time The Chronicle Herald printed most letters regarding ticks, Lyme and Tick-borne diseases, as long as they could verify any links included. A quick Google search came up with only three articles in 2020 re Lyme disease which included nothing about Lyme Disease Awareness Month; the number of cases in 2018 (information to that effect was released in late spring – or thereabouts – with 451 cases reported); or how COVID-19 was seriously affecting Lyme disease patients, especially those that had been going to the US for treatment.

So, with all the talk about COVID-19, and pretty much nothing else, don’t forget your tick protection if de-stressing outside.

Although ticks can be active any time of the year when temperatures permit, adults are more active this time of year and will be until temperatures are consistently below 4C (does that even happen anymore in Nova Scotia?). Therefore, when spending any time outdoors, please remember to undertake preventative measures and ensure that you are doing your daily tick checks.

One of the first things I suggest when I receive calls and emails from people wondering if they may have Lyme disease is for them to review a symptom list, either from the Canadian Lyme Disease Foundation website or from any government website that breaks down the three stages of Lyme. I then suggest that they take the Horowitz Lyme-MSIDS Questionnaire – https://www.eomega.org/article/is-it-lyme-disease which will give them an idea as to whether they may have Lyme and/or other Tick-borne diseases. As well, in December of 2019 the following research article was posted in Frontiers in Medicine – “The General Symptom Questionnaire-30 (GSQ-30): A Brief Measure of Multi-System Symptom Burden in Lyme Disease” – https://www.frontiersin.org/articles/10.3389/fmed.2019.00283/full. This is a very helpful document for health care providers when attempting to ascertain whether a patient may, or may not, have a tick-borne disease, or three.

Depending upon the Horowitz Questionnaire score, I then suggest that they go back to their doctor, if they are lucky enough to have one, and request the ELISA blood test for Lyme. However, I also advise that this test has sensitivity and specificity limitations and a negative test does not necessarily mean they do not have Lyme disease – 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

Also of importance to note, is that there are treatment guidelines for Lyme disease in this province – https://novascotia.ca/dhw/cdpc/documents/statement_for_managing_LD.pdf. Unfortunately, it appears that not all doctors are aware of this and that, although these guidelines follow the IDSA Guidelines (which are presently being updated) they do not include what I believe to be a very important caveat noted on the first page of the complete IDSA guidelines: “It is important to realize that guidelines cannot always account for individual variation among patients. They are not intended to supplant physician judgment 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.” It is my opinion that this very important caveat should be included within our Nova Scotia guidelines document and that your doctor knows that it exists. 

Another document that exists that many are not aware of is the NS “Tick Borne Diseases Response Plan –  https://novascotia.ca/dhw/cdpc/documents/Tick-Borne-Disease-Response-Plan.pdf. This plan has a lot of important information, including other potential illnesses that can potentially be transmitted. Just be aware that researchers at Dalhousie University found even more and that they found things in both the black-legged (deer) and dog (wood) ticks. Although they did not confirm that all of these potential co-infections could be transmitted to humans, there is a chance that they can be if the tick is attached for a sufficient period of time.

If you wish to learn more about Lyme and Tick-borne diseases there are now YouTube videos available for most of the presentations made at the Bridgewater Lyme Conference held on November 16 and 17, 2019 – https://www.youtube.com/channel/UCO3Bd0xDKwUcoBMGyqoDsUg. This YouTube channel also has prevention videos and so much more.
As the NS Representative of the Canadian Lyme Disease Foundation (CanLyme), you can also always reach out to me. My contact info is on the CanLyme website. I am also now a Global Lyme Alliance Lyme Education Ambassador and am willing to educate groups of any size.

On a final note, there is presently a petition making the rounds of Nova Scotia that will hopefully be presented to the Nova Scotia Legislature in the spring of 2021. There are five Asks. If you would be interested in having a copy to help obtain signatures, or are interested in signing, please let me know via donna.lugar@ns.sympatico.ca. The petition is a paper one as that is what is required for the NS Legislature. With the present circumstances, it will take some effort to get a sufficient number of signatures to make the petition worthwhile. Any help you can give would be appreciated.

Remember – ticks can be active all year, depending upon temperatures; bites are usually painless and many are missed; not everyone gets an erythema migrans rash, of which the bull’s eye is just one manifestation; and a negative test does not mean you do not have Lyme or another Lyme-like illness. 

Prevention is key, but even the most vigilant can miss a tick so please make yourself knowledgeable and stay safe. 

Is It COVID-19, Influenza or Tick-borne Diseases? Oh My!

After a relatively quiet summer for tick bites due to the heat and dry weather, the calls and emails have started to increase.

If we weren’t all stressed and confused already, we are now heading into a season with the potential for COVID-19, the flu, and/or tick-borne diseases. There is also nothing to prevent a combination of two or more!

With a few overlapping symptoms it can be problematic to obtain a quick diagnosis so you need to educate yourself a bit on the differences, and the similarities. There is a lot of information available, but not all sites are created equal, so do your research.

First of all, I would like thank all those doing your part in keeping our Nova Scotia COVID-19 numbers down. I see the masks, the hand sanitizing and social distancing taking place all over the province. On a positive note, since both Influenza and COVID-19 are defined as contagious respiratory illnesses, we should be able to keep the flu numbers down this year as well if everyone continues to do their part. Here’s hoping anyway!

Rather than list all the similarities between the three main illnesses, I will list some of the differences, in an effort to help direct people towards the correct diagnosis in a more timely manner.

Lyme:  Signs of early stage Lyme can include an erythema migrans (EM) rash; however, only about 80% will get a rash and many will not see it due to it’s location or the person’s skin colour. According to the CDC, an EM rash gradually expands over several days and may feel warm to the touch, but is rarely itchy or painful. As the EM rash expands, it may have central clearing, which might end up looking like a bull’s eye. However, only a small percentage of EM rashes will look like a bull’s-eye. Other types of EM rashes are more common. 

Other early symptoms that differ from COVID-19 and the flu could be swollen lymph nodes, or neck and joint pain. According to the book “Conquering Lyme Disease” by researchers at the Columbia University Medical Centre “Flu-like symptoms in the absence of cough, runny nose, vomiting, or diarrhea, should raise suspicion for possible Lyme disease.”

COVID-19 and Influenza (flu): As mentioned above, and according to the CDC, both COVID-19 and influenza are contagious respiratory illnesses, so defining symptoms are most often respiratory, with a cough, and shortness of breath or difficulty breathing. A sudden change in, or loss of, taste or smell can be a symptom of COVID-19 which is generally not seen in the flu or Lyme. 

As you can see from the above, there can be quite a bit of difficulty in quickly determining which of the three that you may be dealing with as symptoms can differ from person to person. Fortunately, testing for COVID-19 is fairly quick. However, testing for Lyme is problematic in the early stage as it can take several weeks for the antibodies to build enough to show up in a test.

Ensuring that you wear your mask; undertake proper hand washing measures, which is better than hand sanitizer; and ensuring that you socially distance in situations where there are people not in your bubble; should help you to reduce your risk of both COVID-19 and Influenza.

Since Lyme is a bacterial infection, generally caused by the bite of an infected tick, which can be found anywhere in the province, you should undertake different precautions. Three that I highly recommend are to stay out of tall grasses; shower shortly after getting home; and undertake a thorough tick check, especially in warm, moist areas. However, there are a number of other things you can also do to reduce your chances of getting bitten by a tick, such as wearing permethrin-treated clothes; tucking your pants into your socks and your shirt into your pants; wearing light coloured clothes so that you can spot any ticks before they get to your skin; carrying a lint removal brush to roll over your clothes while outside; etc. Do your research and find what works best for you and your lifestyle. You can also undertake some changes to your landscaping in an effort to reduce the number of ticks that are in your yard.

To add to the problem with tick bites is the fact that a number of illnesses have been found in ticks in Nova Scotia and there is a chance that more than, or something other than, Lyme can be transmitted. Since very little is known at this time about these potential co-infections, prevention is key!

Here are a few helpful sites to obtain additional information on your search for answers:

Please feel free to reach out to me if you have any questions about Lyme and Tick-borne diseases and I will try to help out any way that I can.

Stay safe!

Do The Websites You Link to Define You?

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.

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 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.

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:

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.

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; 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.”

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.

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!

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.

Lyme Disease Awareness Month – Prevention is Key

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!

 

 

 

 

 

 

 

 

 

 

Do As I Say, Not As I Do!

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!

Lyme Disease Misinformation

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.

Bridgewater Lyme Conference

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:

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!