Tick & Tick-borne Disease Facts for Lyme Disease Awareness Month

Although this is the last day of Lyme Disease Awareness Month, awareness should be year-round as ticks can be active any month of the year in many parts of the world, including in Nova Scotia.

I posted a fact on my Twitter account for every day of May, 2022, and I’m compiling them all here for year-round information. Although some repetition, I’m including them all. I have also provided some additional info/links. Most links are not “live” for some reason so you will have to cut and paste.

Fact #1 – Although a bull’s-eye pattern is the best known Lyme rash, it is one of the least common of the erythema migrans (EM) Lyme rashes – https://www.health.com/condition/lyme-disease/lyme-disease-rashes.

Fact #2 – Proper tick removal is very important. Don’t squeeze the tick’s body, cover to smother, spin it with a Q-tip, or burn it with a match – https://www.canada.ca/en/public-health/services/video/lyme-disease-properly-remove-tick.html.

Fact #3 – Ticks do not fly or jump. They wait for a host, in a position known as “questing”, on the tips of grass or shrubs.

Fact #4 – Lyme carditis is when the Lyme bacteria, Borrelia burgdorferi, attacks the heart. If not caught in time, and appropriately treated, it can lead to death. Once thought to be very rare, cases are growing.

Fact #5 – Black-legged ticks are not the only ticks carrying diseases and Lyme isn’t the only thing we need to worry about. Educate yourself.

Fact #6 – The annual number of cases could be 10 times higher than reported – https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6315539/ & https://bmcpublichealth.biomedcentral.com/articles/10.1186/s12889-019-7219-x

Fact #7 – There are now made in Canada guidelines for Early localized/Acute Lyme. Although not 100%, they are better than the IDSA guidelines – https://cep.health/clinical-products/early-lyme-disease/.

Fact #8 – The prophylactic dose prescribed by pharmacists for a tick bite is based on limited research – https://www.ncbi.nlm.nih.gov/books/NBK545493/.

Fact #9 – Although it generally (but not always) takes some time for Lyme to be transmitted once a tick attaches, Powassan virus has been found to transmit in as quickly as 15 minutes.

Fact #10 – Without a test that can diagnose Lyme 100% of the time, this diagnostic tool should be on everyone’s radar – https://www.frontiersin.org/articles/10.3389/fmed.2019.00283/full.

Fact #11 – If not treated or treated appropriately, there can be three stages to Lyme: early localized, early disseminated and late disseminated. Symptoms can overlap.

Fact #12 – A reliance on “signs”, rather than “symptoms”, to diagnose Lyme can lead to many missed cases – https://www.columbia-lyme.org/signs-and-symptoms.

Fact #13 – Remember this? Caused quite a stir. However, many people do not realize how small a tick can be so it’s worth sharing again – https://www.prevention.com/health/a27655728/cdc-ticks-poppy-seed-muffin-photo/

Fact #14 – The annually reported confirmed/probable case #’s for Lyme are considerably less than the actual #. How less? We don’t know for sure – https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6315539/ & https://bmcpublichealth.biomedcentral.com/articles/10.1186/s12889-019-7219-x.

Fact #15 – According to Johns Hopkins, the western zone of NS has one of the highest incidence rates of Lyme in North America – https://www.saltwire.com/atlantic-canada/news/western-nova-scotias-rate-of-lyme-disease-among-highest-in-north-america-100665847/.

Facts #16 & #17 – Lyme is not just a rash and flu-like symptoms – Lyme arthritis, Lyme carditis & Neurological Lyme are all possible. Educate & Prevent!

Fact #18 – Due to their size, the fact that the tick can secrete an anesthetic so you don’t feel the bite, & their preferred locations on your body, many people don’t realize they were bitten. Knowledge of symptoms is key.

Fact #19 – There are many things you can do to your property to make it less hospitable for ticks – https://novascotia.ca/dhw/cdpc/documents/Landscape-Management-Handbook.pdf. These should reduce the number, but not totally eliminate, so prevention measures are still key.

Fact #20 – “Lyme disease needs to be treated! If left untreated, the rash and fever will eventually go away, but infection can later spread to joints, the heart, and the nervous system.” – Stamford Health.

Fact #21 – Some people can become chronically ill due to a tick bite. We do not yet know why – https://www.columbia-lyme.org/chronic-symptoms.

Fact #22 – Lyme arthritis can be misdiagnosed as juvenile arthritis – https://www.columbiadoctors.org/childrens-health/pediatric-specialties/rheumatology/treatments-conditions/lyme-arthritis.

Fact #23 – “Untreated Lyme disease during pregnancy can lead to infection of the placenta” (CDC) – https://www.frontiersin.org/articles/10.3389/fmed.2022.816868/full.

Fact #24 – Borrelia burgdorferi can affect your bones – https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5278181/.

Fact #25 – Powassan virus can transmit very quickly. Therefore, prevention is key – https://www.columbia-lyme.org/powassan-virus.

Fact #26 – Did you know that the IDSA Lyme Guidelines have a Disclaimer, under the Notes section, advising that following the guidelines is voluntary & not intended to supplant physician judgement. All doctors should make themselves aware of the FULL Disclaimer.

Fact #27 – Tick testing is available in Canada, for a fee – https://geneticks.ca. Although not a diagnostic tool, it can provide beneficial information.

Fact #28 – Ticks can be transmitters of a number of things – https://www.canada.ca/en/public-health/services/reports-publications/canada-communicable-disease-report-ccdr/monthly-issue/2019-45/issue-4-april-4-2019/article-2-increased-risk-tick-borne-diseases-climate-change.html. This list, and no doubt more. Canada needs to do better keeping us up-to-date on what’s here.

Fact #29 – There is a very good, made in Canada, educational resource now available for nurses & other health care providers – https://vbd.casn.ca.

Fact #30 – Many Lyme patients have undertaken considerable research while stuck at home too sick to do anything else. Perhaps Doctors too busy to do research should start listening to them.

Fact #31 – On the last day of #LymeDiseaseAwarenessMonth I want to reiterate that Lyme isn’t rare; hard to get; or always easy to treat; and that it’s not always just a rash and flu-like symptoms. It’s also not just Lyme that can transmit. Prevention & Education are key!

Lyme Disease Awareness Month – May 2022

Well folks, it’s that time of year again when you actually see some awareness being raised.

I am pleased to advise that there were a couple of firsts in Nova Scotia this year:

1. We had our first ever flag-raising which took place at Halifax City Hall on Tuesday, May 3rd. The flag raising also included the reading of the Halifax Regional Municipality’s Lyme Disease Awareness Month Proclamation by Mayor Mike Savage, as well as the reading of the province’s Proclamation by Minister Steve Craig, representing Premier Tim Houston.

2. Province House was lit “lime” green this year on May 3rd for the first time in honour of Lyme Disease Awareness Month. Halifax City Hall was once again lit “lime” green on May 3rd as well.

There are a number of things happening in the province this month, including:

  • On May 5th there will be a free “Changing Lyme for Life Series” put on by FREmedica. The featured speaker is Dr. Christine Schaffner, ND. Tarin Boucher, the winner of the WAVE 1 during a presentation to our NS Lyme Support Group, will be telling her story as well. Registration is required and you could win a WAVE 1 – https://fremedica.com/.
  • Our regularly scheduled Lyme Support Group will be Tuesday, May 10th at noon. Please let me know, at donna.lugar@outlook.com, if you would like to receive a Zoom invite.
  • On Wednesday, May 11th, there will be a CBC Maritime Noon call-in show featuring Dr. Vett Lloyd and myself. It will be starting at approximately 12:10 and going until 1:00.
  • On Monday, May 16th, at 1:30 pm, Dr. Janet Sperling, an entomologist and new President of the Canadian Lyme Disease Foundation, will be giving a free Public Lecture on Lyme disease in Nova Scotia, via Zoom, put on by the Seniors’ College Association of Nova Scotia. Registration is required via www.theSCANS.org.
  • On Thursday, May 19th, we will be having the monthly meeting of the NS Lyme Advocacy Group. We are always looking for people interested in helping out with events, etc. You can reach out to me if interested.

There are also some exciting things going on elsewhere this month. For instance the movie “The Quiet Epidemic” premiered at Hot Docs in Toronto. There are still a couple of days left to purchase the ability to view – https://hotdocs.ca/whats-on/hot-docs-festival/films/2022/quiet-epidemic.

The LivLyme Foundation is hosting a free all day virtual Summit on May 7th – https://livlymefoundation.org/. Lots of amazing speakers, such as Dr. Adrian Baranchuk of Queens University; Dr. Timothy Haystead of Duke University; and many more – https://livlymefoundation.org/.

I hope you all have a chance to educate yourselves and help raise awareness this month, perhaps by decorating your homes, or yourself, in lime green for the month of May. Writing a Letter to the Editor for your local paper; telling your story on social media; or speaking to your government representatives are also great ways to help.

Stay safe folks!

Life is Not Rosy

These last couple of years have been horrendous for so many people. Many lives have been lost and many more are suffering in a variety of ways. People have lost their incomes. Mental health is at an all-time low. Education has suffered. Most health issues, other than COVID, and maybe already diagnosed Cancer, have seemed to take a back-burner, causing unknown suffering and deaths.

I know I haven’t been functioning well for quite some time. Because of my own regular health worries, COVID and worrying about the mental health of my family, my own mental health has taken a significant dive. I can’t focus and I have no interest in anything that I did before. I can spend hours, and hours, and hours, doing nothing other than perhaps playing a mindless game. Some may say it’s due to the COVID vaccine as I have had two, plus the booster. Some may say it’s due to the lockdowns and uncertainty. Others may say it’s still due to tick-borne diseases. At this point, there is probably no way to figure it out. You just have to ride the wave.

I’m seeing many family members going through their own mental and physical health issues. We don’t know what the cause of theirs are either and many doctors are so stressed and overworked due to COVID they no longer have the ability to deal with such issues.

I am afraid of COVID. I was born with many health issues and have experienced some over most of my life. My lungs are not strong and dealing with tick-borne diseases has shown me that I do not bounce back like some might. However, I also don’t like the present state of fear that many of us are living in, a lot of it with the help of mainstream media and social media. I think it’s time we learned to live with it, just like we do with the flu. The fact that there have been less cases of the flu since hand washing properly; keeping a reasonable distance from others; and staying home when sick, means, to me anyway, that many of us may not have been doing some of these things already, for whatever reason. The masks, of course, have no doubt helped as well even if it’s for no other reason than to keep people mindful of personal space.

Nova Scotia had been lucky, for the most part, during the early stages of the pandemic. Although there were many deaths, it could have been much worse. However, with the new variants, nothing we do seems to stop the spread and deaths are increasing. As well, vaccinated and unvaccinated are being pitted against one another, even when some of the unvaccinated have legitimate reasons for not wanting to take a chance with the vaccine. If in a place like Nova Scotia, where many have been vaccinated and follow restrictions, significant cases and deaths are still taking place, maybe it’s time to rethink what we are doing.

Trying to help people who are possibly dealing with tick-borne diseases prior to COVID was hard. Trying to help them during COVID is downright impossible. The majority of Lyme researchers have been absconded to COVID research. Same with many doctors, such as the doctor that was running the Winnipeg Tick Collaborative Care Service and those that were supposed to be working on Lyme disease initiatives here in Nova Scotia. Of course, people also cannot easily cross the border to obtain treatment as many Lyme patients have decided to forego the vaccine due to their ongoing health issues. Those already sick are getting sicker, and many more people are being bitten as they are being told to get outside and get fresh air, without any warnings about the hazards of ticks.

I apologize for rambling, without saying much at all, but that’s were my head is these days. Hopefully, as weather starts to improve, and I can get outside more, things will be better. Here’s hoping!

Stay safe folks, and keep an eye on your mental health.

Lyme Carditis – When Lyme Affects Your Heart

There are many people that believe that Lyme is no big deal. It’s just a rash and flu-like symptoms. No worries. Why should they care.

Lyme can affect people in different ways; with different symptoms; and yes, it can cause death. There are three stages to Lyme: Acute Lyme, Early Disseminated and Late Disseminated. The bacteria, Borrelia burgdorferi (Bb), can affect any system in your body. Although Neurological Lyme is a big issue and more people now know about it, very few people know about Lyme carditis.

There is a doctor in Canada who has been trying to raise awareness of Lyme carditis for quite some time now. Dr. Adrian Baranchuk is a Professor at Queen’s University and a Clinician-scientist at Kingston General Hospital. He has written papers regarding the subject and has been interviewed numerous times. However, what he has been saying has, for the most part, fallen on deaf ears.

Lyme carditis is when Bb attacks the heart. According to the UPMC Heart and Vascular Institute, “The bacteria hinders your heart’s electrical system, as it enters the heart tissue and can interfere with electrical signals, causing a condition called heart block.” (https://www.upmc.com/services/heart-vascular/conditions-treatments/lyme-carditis). According to the CDC, “Between 1985 and 2019, eleven cases of fatal Lyme carditis were reported worldwide.” (https://www.cdc.gov/lyme/treatment/lymecarditis.html)

Dr. Baranchuk wrote a blog post for the Lyme Disease Association, Inc. in May of 2021 – https://lymediseaseassociation.org/blogs/lda-guest-blogs/adrian-baranchuk-md-guest-blog/ – in which he notes that “Other cardiovascular manifestations include alterations of the ‘motor’ of the heart (sinus node disease) (3), a disorganization of the cardiac rhythm that increases the risk of stroke (atrial fibrillation) (2), lesion in the distal cables of the heart (bundle branch blocks) (4), and different degrees of inflammation of the layers of the cardiac walls (myocarditis, pericarditis, and endocarditis) (2).”

Dr. Baranchuk also notes in the blog entry that “Decision for permanent pacemaker implantation should wait until completion of antibiotics as heart block in LC is often reversible.” Unfortunately, very few doctors are aware of Lyme carditis and even more will not consider it as they don’t believe it is common.

Although Lyme carditis may not be as common as the erythema migrans rash, and some other more objective symptoms, I do believe it is much more common than known. For instance, since 2011, I have spoken to several people just in Nova Scotia whose hearts were affected by Bb. In some cases they received IV antibiotics and in others they received a pacemaker. In one case, a young gentleman received a pacemaker but a curious doctor started to ask questions due to his age and how his heart was affected. This resulted in testing for Lyme, which came back positive. Unfortunately, curious doctors seem to be few and far between these days, for a number of reasons.

If you are having light-headedness, fainting, shortness of breath, heart palpitations, and/or chest pain (CDC) and a specific cause has not been determined, please give Lyme carditis some consideration. If you spend any time outdoors or have pets that do, please raise the issue with your doctor. It is better to be safe, than sorry, and it is treatable.

The following articles/interviews regarding Lyme carditis should provide enough information to investigate further. There are many more documents regarding this issue so I don’t understand why it still seems like an unknown issue by many health care providers. Please educate yourself, and your medical team, if necessary:

I’m not trying to terrify people with the articles I write. I don’t want to keep people from going outside. I do, however, want people to take the issue more seriously and undertake appropriate preventative measures when heading outdoors and to make sure pets that go outside are checked carefully.

Stay safe!

Ticks Can be Active All Year – But Especially in the Spring and Fall

Due to the limited awareness/information campaign undertaken by Nova Scotia Health regarding risks associated with tick bites many people seem to think that they are only a problem in the spring and summer, if that. In Nova Scotia, and many other areas, temperatures allow for ticks to be active any month of the year. They have been found on people and pets in December, January and every other month when temperatures rise above freezing.

With this being the time of year where people are putting their yards to bed for the winter; hiking to see the beautiful fall foliage; hunting; and just enjoying the outdoors prior to the winter months; appropriate tick bite prevention measures need to still be undertaken. There are a lot of things you can do to help prevent a tick bite, but here are a few easy ones:

  • tuck your pants into your socks and your shirt into your pants to extend time for you to check for ticks before they find skin;
  • wear light coloured clothing to ensure that you will see any crawling ticks before they reach your skin;
  • carry a lint roller or sticky tape with you to pick off any unattached ticks;
  • use permethrin treated clothing (available at Marks and on-line) and either DEET or Icaridin on your skin;
  • stay out of long grass;
  • don’t jump in leaf piles;
  • toss clothing into a hot dryer for 15 minutes when you get home to kill any hitchhiking ticks;
  • shower shortly after getting home to wash off any unattached ticks;
  • do a thorough tick check, especially in warm, moist areas;
  • if you find an attached tick, ensure that you remove it correctly – DON’T squeeze it’s body (here is a good tick removal video put out by the federal government – https://www.canada.ca/en/public-health/services/video/lyme-disease-properly-remove-tick.html.

Although we do not yet know how many confirmed/probable cases of Lyme there were in Nova Scotia in 2020, we do know that in 2019 there were 830 confirmed/probable cases, which was a substantial increase over the 454 cases in 2018. We also know that the confirmed/probable case numbers are not the actual annual number due to under-reporting, etc. Although there presently isn’t agreement as to how many cases are being missed annually in Canada, and Nova Scotia, it is agreed that cases are being missed. Therefore, the number of annual cases are no doubt much higher.

The following are two publications regarding how many cases we may be missing in Canada:

Whether we should multiply the case number by 2, 5, 10, or more, to get the actual number of cases, the annual numbers are higher than what is frequently quoted in the media, resulting in many not giving Lyme and Tick-borne diseases much thought. It is time to change that perception so that everyone undertakes appropriate preventative measures.

From the calls, emails, social media posts, etc., in 2020 and 2021, the number of people bitten by ticks has again increased.

Please take the issue seriously and do what you can to protect yourself from ticks. They are not going anywhere; they are going to increase; the number carrying diseases will no doubt continue to increase; so we need to learn to live with them, but have a healthy fear of them. Fresh air and sunshine is imperative for good health so we cannot stay in our homes afraid of ticks.

Stay safe!

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- https://www.ncbi.nlm.nih.gov/books/NBK545493/. 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 – https://www.canada.ca/content/dam/hc-sc/migration/hc-sc/dhp-mps/alt_formats/pdf/medeff/bulletin/carn-bcei_v22n4-eng.pdf.

This topic is not new. In 2019, the following article was written by another Nova Scotia resident, with better credentials than I – https://www.saltwire.com/nova-scotia/opinion/counterpoint-theres-no-evidence-quick-dose-of-antibiotics-will-stave-off-lyme-309057/.

The use of this prophylactic has been used in other areas for quite some time now. The following is an article from Rhode Island – https://www.pharmacytoday.org/article/S1042-0991(17)31328-2/fulltext?. 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 – https://ca1se.voxco.com/SE/79/Lymedisease_MaladieLyme. (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, Canada.ca/Lymedisease, 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 (https://wrha.mb.ca/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.

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 – https://jamanetwork.com/journals/jamadermatology/fullarticle/419698

Irritable Bowel Syndrome – “Intestinal Pseudoobstruction Caused by Chronic Lyme Neuroborreliosis. A Case Report.” – https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4496901/

Dementia – “Secondary dementia due to Lyme neuroborreliosis” – https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6096534/

Juvenile arthritis – “Clinical characteristics, treatment and outcome of children with Lyme arthritis in Nova Scotia” – https://academic.oup.com/pch/article/20/7/377/2281049

Temporomandibular joint syndrome (TMJ) – “Lyme disease misdiagnosed as TMJ Syndrome. A case report. – https://pubmed.ncbi.nlm.nih.gov/2812630/

ALS – “ALS mimic by neuroborreliosis – A case report.” – https://onlinelibrary.wiley.com/doi/full/10.1002/ccr3.2569. 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 – https://onlinelibrary.wiley.com/doi/epdf/10.1111/anec.12599

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