Pharmacists Able to Prescribe a One Dose Prophylactic for Lyme

Nova Scotia is the latest of places where pharmacists are allowed to prescribe a one dose prophylactic upon a known tick bite, within 72 hours of the bite, and if there are no symptoms.

Unfortunately, many see this as a good news story, but I’m not so sure.

The following is a Canadian research document from 2019 regarding the single dose prophylactic- If I am reading this document correctly, the decision to provide this one dose prophylactic is based on limited, and outdated, data. The recommendation in the document is “Further high-quality studies are needed to confirm the results of this RCT with appropriate enrollment and follow-up of a validated outcome in a generalizable setting. Ideally this research would be conducted in Canada to inform Canadian clinical decision-making and policy making.”

So, why are we promoting it now? Before more studies/research is undertaken?

As well, there is information available that suggests this single dose prophylactic may only prevent a rash. However, it should be noted that only about 80% actually get a rash and of that 80% many don’t see it or don’t realize that there are other types of erythema migrans rashes. It’s not just a bull’s-eye rash. We also don’t know if it is effective for co-infections, of which there are many in Nova Scotia.

As well, apparently antibiotics can interfere with future Lyme testing, resulting in difficulty in getting diagnosed –

This topic is not new. In 2019, the following article was written by another Nova Scotia resident, with better credentials than I –

The use of this prophylactic has been used in other areas for quite some time now. The following is an article from Rhode Island – It’s interesting to note that it mentions that it is not 100% guaranteed to work and that people need to be aware of that. I’m not sure that this fact is being adequately communicated. I’m also not sure if any follow-up is being provided to ensure that people remain symptom free.

If this prophylactic treatment does not work, and subjective, rather than objective, symptoms appear, it may be very difficult to obtain a diagnosis as most doctors require visible, objective, symptoms prior to a diagnosis and treatment. Even some possible objective symptoms, such as bell’s palsy; swollen, inflamed joints; heart block; etc., are not always considered to potentially be the result of a tick bite, especially in areas newer to Lyme carrying ticks.

Another concern with this prophylactic treatment is that pharmacists need to see the tick and if the tick is taken in to the pharmacist it may be disposed of rather than tested for any pathogens. Although it appears that the only tick testing being undertaken in Canada at the moment is at Geneticks, which is a private lab and testing is for a fee, I highly recommend that people have ticks tested that were attached to a human, or pet, and were either removed incorrectly (body squeezed) or engorged. As there are a number of things that have been found in ticks (both blacklegged and dog) in the province, I suggest the full panel. This tests for a number of things, most, if not all, of which have been found in the province.

Please do your research prior to agreeing to the one dose prophylactic.

Evaluation of PHAC’s Activities for the Federal Framework on Lyme Disease

As some of you may know, the Office of Audit and Evaluation (OAE) at the Public Health Agency of Canada (PHAC) is undertaking an evaluation of PHAC’s activities in support of the Federal Framework on Lyme Disease and Action Plan. This evaluation will assess the effectiveness of PHAC’s activities from May 2017 until March 2021. The evaluation will identify any successes, as well as opportunities for improvements.

As a key stakeholder involved in Lyme disease activities (I run the NS Lyme Support Group), I was able to have an interview with staff of the OAE. Based on the questions provided, it seems quite evident, to me anyway, that PHAC is quite happy with what they have accomplished to date. Unfortunately, I feel quite different about that as I believe they have not been effective in getting any of their updated, or new, information out to the general public and health care providers.

Based upon responses received, the OAE has recently decided to broaden their reach and provide an open link to a survey which will now remain active until July 16, 2021 – (You may have to cut and past the link.) The interview was much better, in my opinion, than the on-line survey (I did both) as the on-line survey only has a couple of spots where you can provide additional comments. However, I believe the more that take the survey, the better. It takes approximately 10-15 minutes.

Some of the questions included in the interview, and in the on-line survey, were:

  • How familiar are you with various Lyme disease surveillance activities and products completed or supported by PHAC? (For example, surveillance through the Canadian Notifiable Disease Surveillance System (CNDSS), Lyme Disease Enhance Surveillance (LDES), risk maps, region specific products, annual reports, web postings, infographics).
  • What impacts, if any, have your members observed on health professionals capacity to address patient needs as a result of PHAC’s activities in guidelines and sharing best practices – including research.
  • How familiar are you with PHAC’s produced or supported Lyme disease education and awareness activities/resources? Specifically for
  • – Those directed at the Canadian public and produced by PHAC (i.e. social media,, posters and wallet cards for Canadians, including Indigenous peoples; awareness campaigns, children’s exhibit, etc.); and
  • – Those directed at Health Professionals and produced by other organizations with funding from PHAC (i.e. the Centre for Effective Practice tool on Lyme disease; The Society of Obstetricians and Gynaecologists of Canada; Lyme-aid for treating Pregnant women; Canadian Association of Schools of Nursing tools for nurses, etc.).

I have included a few of the questions here to give an idea of the direction in which they were going which, in my opinion, was to raise all the things that PHAC has done since the Federal Framework on Lyme Disease and Action Plan was completed. My response was that although a number of items have been completed, very few people know about it as all of the information tends to only be on their websites and/or provided to Lyme advocates to disseminate to their groups. This leaves out a significant number of Canadians totally unaware of what’s going on.

In my opinion, all levels of government need to be “in your face” when it comes to tick awareness and bite prevention so that the number of annual cases do not continue to go up. I also believe health care providers need to be required to educate themselves on Tick-borne diseases.

I advised that a cost analysis should have been the first thing undertaken. Once Canadians are aware of the actual cost of Tick-borne diseases, including the people with undiagnosed and misdiagnosed cases that are leaving their provinces for diagnosis and treatment, or going to alternative/complementary health care providers in order to get well, everyone will finally realize the significant impact our lack of knowledge is having on this country.

Manitoba is the only province that I know of that has undertaken a cost analysis. Based upon the results, they opened a Tick Collaborative Care Service (

“Given the increasing burden and challenges associated with diagnosing and managing cases of possible late Lyme and/or other emerging tick borne diseases, a provincial Tick Collaborative Care (TiCC) Service has been developed.

This service aims to:

  • streamline, coordinate and improve the care of this patient population
  • enhance collaboration between primary care and specialists
  • serve as a support and education resource for primary care providers caring for this patient population.”

This type of service should be available in every province.

Please consider responding to the survey above and ask them for a copy of the report when it is completed.

Canada needs to do better.

Update: The following is the link to the report – It’s quite a read.

Diagnosed with Fibromyalgia, Chronic Fatigue, MS, Early Onset Alzheimers, Parkinson’s, Irritable Bowel Syndrome, Juvenile Arthritis, Rheumatoid Arthritis, Raynaud’s Syndrome, AV Heart Block, etc., etc., etc.? – Could it be Lyme or another Tick-borne Disease

There is more and more research suggesting that a variety of present day illnesses could be as a direct result of bacteria. The spirochete bacteria, Borrelia burgdorferi, which was “discovered” in Lyme, Connecticut, has actually been around for a considerable period of time and has had different names. It has been found in Amber in the Dominican Republic and it was found in the Iceman, Otzi.

Could many of the present day, and fairly recently discovered, autoimmune diseases/illnesses be caused by Borrelia? Could some cases of the illnesses that Canada has a high incident rate for, such as MS, actually be as a result of tick-borne diseases? These are questions that we cannot presently answer because the testing, and knowledge, is not adequate.

Every time I receive yet another diagnosis, I immediately Google the diagnosis and Lyme to see if there could be any connection. It’s crazy how many now have research to suggest that at least some cases of a number of different illnesses could be as a result of Borrelia burgdorferi or another Tick-borne pathogen.

The following are just a few that I have found. I only linked one research article for each one but some have many more:

Lichen sclerosus – “Possible Role of Borrelia burgdorferi Sensu Lato Infection in Lichen Sclerosus –

Irritable Bowel Syndrome – “Intestinal Pseudoobstruction Caused by Chronic Lyme Neuroborreliosis. A Case Report.” –

Dementia – “Secondary dementia due to Lyme neuroborreliosis” –

Juvenile arthritis – “Clinical characteristics, treatment and outcome of children with Lyme arthritis in Nova Scotia” –

Temporomandibular joint syndrome (TMJ) – “Lyme disease misdiagnosed as TMJ Syndrome. A case report. –

ALS – “ALS mimic by neuroborreliosis – A case report.” – This is interesting in that the case discussed ended up not being deemed neuroborreliosis but the report suggests: “… it is vital to exclude potentially treatable differential diagnoses such as neuroborreliosis.”

AV Heart block –

I could go on and on but you get my drift.

Many people reach out to me in an attempt to determine whether they might be dealing with Tick-borne diseases. Rather than recommend a blood test, I first suggest filling out one, or both, of the two following questionnaires:

The symptoms of Lyme and other Tick-borne diseases can build without proper treatment and they can be so diverse that they don’t make sense to those with them, or those trying to diagnose. The potential list of symptoms is long and, taken separately, or only a couple at a time, could be almost anything. The general rule of thumb is if you have a number of symptoms (say 20 or more) affecting multiple systems; they come and go; they migrate; and they are slowly building; consider a Tick-borne disease (or two!).

There are other areas where you can find more comprehensive symptom lists, such as on the Canadian Lyme Disease Association (CanLyme) website, but even the CDC or Health Canada have lists that show the three stages of untreated Lyme. Many still seem to believe that Lyme is just a rash and flu-like symptoms. Most of our health care providers have limited knowledge as to the early and late disseminated Lyme symptoms, or even that they exist.

How do we ensure that ALL health care providers, whether GP’s, Specialists, Nurse Practitioners, etc., are adequately trained in all stages of Lyme and Tick-borne diseases? How do we ensure that your GP looks at more than one symptom at a time and tries to reach a diagnosis, rather than just attempting to mask symptoms?

Education of Tick-borne diseases must be significantly increased in medical school and those already in the field need to be mandated to continue their education on the issue. We are way past the time to suggest that Tick-borne diseases are “emerging” and we are also dealing with too many extremely sick people to suggest that doctors are too busy to investigate Tick-borne diseases. The time is now!

Nova Scotia, and other areas, need to take a page from Manitoba, and take this issue seriously. The cost to patients and our health care system is becoming prohibitive.

Where Is The Concern About Ticks in Nova Scotia?

We are coming to the end of May which has historically been known as Lyme Disease Awareness Month, although ticks can be active any time temperatures are above freezing. May is when Proclamations are made, buildings are lit up lime green, and any marches or awareness events are usually held.

Unfortunately, due to COVID restrictions, very few events have happened around the world, but social media was abuzz during the month. However, for the most part, the information flowing on social media was from Lyme advocates, patients, and those with dogs – not from our local governments. For instance, even though the Premier of Nova Scotia signed a proclamation declaring May as Lyme Disease Awareness Month, I have seen nothing from the province advising of that fact, even after considerable prodding.

One such prod was an email I sent to both the Premier’s office and the Chief Medical Officer’s office on Friday, April 30th, which suggested that the regular COVID updates should include a mention of tick prevention as ticks seem to be quite an issue this year. With people spending more time outdoors for mental health purposes, it would have been very beneficial for the issue to be mentioned, as thousands of Nova Scotians listen to the COVID updates. Although I received responses advising that the emails were received, I never received a response from either office and I don’t believe anything has been mentioned during the COVID updates.

I’m also aware of a gentleman that sent a plea to the Premier requesting assistance in helping to raise awareness during Lyme Disease Awareness Month. The following is his first email, which was sent on April 27th (I say first as he sent subsequent ones requesting a response):

“I am sending this email to request your assistance in kicking off the Lyme+ Tick Disease Awareness Month in Nova Scotia. The Nova Scotia Lyme Support Group has purchased 3 custom made ties and we are requesting that you, your minister of health and your chief medical officer wear the ties to help promote tick awareness and to also help educate Nova Scotians of the risks of tick bites and the diseases ticks are carrying. Thank you in advance for considering this request and please provide guidance on to who and where the ties can be delivered. “Education Is Key”! Please help us educate the people of Nova Scotia. Please contact the undersigned if you have any questions or if you require additional imformation (sic).”

Although he too received an email back stating that his was received, to date he has still not received a response, even though he, and several others, have followed up on the initial request. An email was sent to the Premier on May 18th and another on May 21st, which is as follows:

“I continue to receive an email thanking me for contacting your office. You are welcome. What Is needed and expected is an actual response to my request for you and your minister of health and your chief medical officer to wear customized ties to raise awareness about Lyme+ and tick illness during Lyme disease awareness month. I keep receiving notifications that you have received my request but I have yet to receive a response. The window is closing on Lyme disease awareness month and we need our Premier to help educate and raise awareness to let Nova Scotians know the risks associated with tick bites and especially the high risk that exist here in Nova Scotia. There are many people suffering from chronic tick illness in our province and they have been suffering in isolation during the Covid (sic) pandemic. I am pleading with you to be the Premier who finally acknowledges the tick threat as well as the diseases they are carrying. By wearing a tie you could potentially save someone’s life and at the same time provide some much needed hope to Nova Scotians and Maritimers who have been afflicted by tick disease, as well as to the people who are caring for and supporting someone with tick illness. CBC radio will be conducting a Tick/Lyme+ awareness program on Wednesday the 26th of May as part of the Maritime Noon broadcast. This would be a perfect day for you and your team to wear the ties. I listened to your Covid (sic) Update today and you and Dr Strang wore ties to celebrate Cape Breton’s resilience and strength. We could use just a little bit of both of those things right now. Please provide an address or a contact person and I will send the ties to a location of your choosing.”

He wrote two more in an attempt to receive a response prior to the end of May. They are as follows:

“I am following up yesterday’s email to request a response from your office. Some people who are  included with this email traffic have also written to you to request that you respond to me. Another day has passed and I have yet to receive a response to my initial request dated the 27th of April. I’ve attached a picture of the map that was used to create the customized ties. The map hangs in Albion Maine where many Nova Scotians and Maritimers have had to travel to seek treatment for Lyme+/Tick Illness. Each tack on the map/tie represents someone who had to leave our country for a diagnoses and treatment. It was my hope that you would be the political leader who would finally provide some help and some hope. If you are not willing to wear the tie that is an acceptable position, but to not respond to my requests is unacceptable to me. I’ve included a photo of the map that I took when I travelled to Maine for treatment as well as a photo of the customized ties. Please save these photos for your reference and it is my hope that you will share them with your leadership team as well as health authority personnel. Those tacks on the map represent people and so do you. Ignoring this disease has cause a lot of unnecessary pain and suffering, help us end the denial.”

“Lyme disease awareness month is coming to an end but Lyme disease and ticks don’t pay attention to a calendar. I am disappointed that you weren’t able to even find the time to reply to the numerous emails that were sent to you, I am more disappointed that the opportunity to educate Nova Scotians of the risks that ticks pose in our province was ignored. Education is crucial to ensure this zoonotic disease doesn’t destroy one more person or family. Lyme+ And Tick Illness advocates and activist are trying our best to raise awareness. All of our efforts to engage the NS medical authority and your government has been futile. The result of this denial will mean that there will be more tacks added to a map in another country. These people that can leave for help are the lucky ones, Imagine if this was you or your child, being very sick and having to leave our province our country for health care, or worse, not having the means to do so. This migration has been going on for years now. What is it going to take to get your government engaged? Please let us know, and we will do it. As I write this I am listening to your CBC radio briefing, It is enraging that you and your health authority have used all of your bandwidth to ignore us in both official languages.”

In a province that has the highest rate of Lyme in Canada you would expect more from our politicians and health care leaders. Unfortunately, there is a wall that has been built and we are unable to scale it on our own. I ask all of you that read this to voice your concern regarding the total disregard for Tick-borne diseases in this province. Yes, COVID is of utmost concern at the moment, but it shouldn’t be at the detriment of all. It is worrisome to think how many more people have gotten a Tick-borne disease over the last 14 or so months while being told to go outdoors, but not being reminded to prevent tick bites.

As one of the first Canadian provinces to deal with disease carrying ticks, we should have a handle on this issue and although our Chief Medical Officer actually thinks that we do, I, and hundreds (if not thousands) of other Nova Scotians, would beg to differ.

Lyme Disease Awareness Month Suggestions

We are once again coming up to May which has historically been known as Lyme Disease Awareness Month, although ticks can be active any time temperatures are above freezing. May is generally when Proclamations are made, buildings are lit up lime green, and any marches or awareness events are usually held.

This May, a suggestion has been made to tie a lime green ribbon around a tree (or post) fronting your property, that would be visible from the street. This is an easy way to raise awareness and show how many people are either dealing with Tick-borne diseases, or are concerned about them. Your local Dollar Store probably has lime green ribbon and merchandise that you can display for the month of May. You may also be able to find green outdoor lighting at your local hardware store that would help set the scene. Photos should be taken and posted on whatever social media platforms that you are on. For areas with a high concentration of cases, and hopefully showing a lot of lime green, a Facebook live video, or a call to local news organizations, would also help show the level of concern and provide much needed awareness.

Unfortunately, there has been very little press/awareness in Canada about ticks and Tick-borne diseases over the last year, or so. This is probably due to COVID, but could also be due to any number of things, such as health groups in Canada still believing that Lyme is rare, hard to get, and easy to treat.

Another suggestion that was made for May is to fly a kite for Lyme. Many of us feel like our health care professionals want to say “Go Fly a Kite” because they don’t want to deal with us. Now it’s time to do so. Make, or buy, a lime green kite and get ready to fly it somewhere near you. Again, make sure you take a photo, video, or whatever to share far and wide on social media. Hopefully, once COVID restrictions allow in Nova Scotia, we can have a “gathering” of sorts on a beach or in a large park, but we would still want others to participate wherever they are located. We are presently investigating a bulk purchase of lime green kites so once I have more information I will let folks know. This may be something that waits until next year when, hopefully, COVID has gone.

We need to start being seen and these are two fairly easy ways to do so, but any show of support during May, whether it is wearing lime green, posting awareness information, or anything, is helpful. If even one person is educated, that is one less that has to go through what thousands of Canadians are going through.

I also want to note that, in Nova Scotia, there will be a number of municipal units proclaiming May as Lyme Disease Awareness Month and providing information on ticks and tick-borne diseases. If you see something on-line, please make a positive comment of thanks. We need everyone to realize that in many places ticks are not rare, tick-borne diseases are easy to get, and treatment can be VERY problematic.

The chatter that I have seen on social media so far this year indicates a very bad year for ticks, at least in Nova Scotia. Awareness and prevention are key!

Stay safe!

#Ticks #Lymedisease #Lymediseaseawareness #Tickbornediseases #Stopthebite #Preventioniskey

There Is Lower Cost Help for the “Rich Man’s” Illness

The last few Lyme Support Group meetings that I have held via Zoom reminded me how many people are suffering in this province. There were new people at the last three and listening to their stories made me want to cry. I don’t know how any health care professional can listen to these people and not want to help, in any way that they can. I only wish I could do more to help but we are at a standstill right now due to COVID. They cannot leave the province for treatment and there are very few health care practitioners in this province (or country) with a good handle on Tick-borne diseases. As far as I know, none of them are accepting new patients.

Unfortunately, many cannot afford most of the “alternative” treatments for Lyme and Tick-borne diseases that are presently available. The alternative/complementary health care field is not cheap and is generally out of pocket. Although there is some financial assistance available, most of the people without hefty savings accounts, or other means, are left to their own devices. Most are getting steadily sicker and losing hope.

Fortunately, there are a few things people can do that do not cost a lot and should help build up the immune system to help fight any illness:

  • Dietary Changes – It is generally recommended to eat as “clean” as possible. No processed foods. Limit or remove sugar. No artificial sweeteners. Gluten may become an issue. Limit or remove dairy. Red meat may cause gastrointestinal issues for some. Caffeine and alcohol should be avoided. 
  • Garlic – Rumour has it that ticks don’t like the smell of garlic. It has actually been used by pest control companies by spraying it on the perimeters of lawns in an effort to keep them off. I have been told by some that eat garlic regularly that they have never found a tick on themselves, even when they spend a considerable amount of time outdoors. Hmmm  –  “Garlic Can Fight Chronic Infections” –
  • Vitamin D Supplementation – There is mixed info regarding this one. Although nobody seems to be against supplementation, there is a lot of variety regarding how much, and who needs it. Do your research and consider getting your levels checked by your doctor prior to adding.
  • Thymus Tapping – I go to an Energy Healer who recently told me about this. She said if you do it just as you are starting to feel a cold coming on you can stop it in its tracks. It actually worked for me. You can do it other times as well. She suggested you tap counter clockwise around the Thymus area and then tap clockwise.
  • Energy Healing – I have tried this myself over the last few years with varying results. I have always gone to the same Energy Healer as she came highly recommended and I have experienced improvements each time, some visits more than others. As is the case with just about every alternative/complementary health care provider, Energy Healers are not created equal. They all have different training and some may not be as reputable as others. Always do your research.

There are many more things out there that people have tried. Something that works for one, may not work for another. Some may interact with other things that you are doing so do your research and ask questions.

Lyme and tick-borne diseases seems to be a very individualized illness. There doesn’t seem to be anything that works for everybody. Listen to your body and only do what YOU can do. Please don’t compare yourself with anyone. We are all different.

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 – 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” – 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 –

Also of importance to note, is that there are treatment guidelines for Lyme disease in this province – 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 – 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 – 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 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 ( but, of even more importance, is the fact that there is a link on the ALDF website to

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 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 – 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” ( 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?” ( 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 (, 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 – – 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) – 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 –

Another Lyme research network also exists in Canada. The Canadian Lyme Consortium – – 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 ( 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 (
  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 –

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 – – 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:


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!