Tag: tickborne

Help Needed – Nova Scotia Lyme & Tick-Borne Diseases Association

In November of 2024 the Nova Scotia Lyme & Tick-Borne Diseases Association was officially registered. At that time we had a six member board. Due to a variety of issues, such as moving out of the province and workloads, we have had three resignations. However, we have been fortunate to have three new people joining us. Having gone through this we now realize that we need a larger board so that we can maintain a quorum when some members are unable to attend. Therefore, we need YOU!

We have been meeting for an hour the first Thursday of the month at 7pm, via Zoom; however, we are in the process of trying to ascertain if this date/time is still working for everyone. Due to vacations and a limited Agenda we took July and August off.

Along with Board members, we also have a number of Lyme advocates that attend our meetings to keep them in the loop as they help with initiatives. We could also use more advocates.

We have no specific requirements to become a Board member other than you have to reside in Nova Scotia. We would love to include people from a number of stakeholder areas such as pharmacists, naturopaths, doctors, nurses, veterinarians (or people that work in that field), those that work in fields that are considered greater risk (Search & Rescue, NSPC line technicians, surveyors, and more), etc. Some knowledge of Lyme and tick-borne diseases would be helpful, but not necessary. We can educate you in that regard.

Please reach out to me if you are interested in learning more about being on the Board OR if you would like to help out with advocacy efforts. We are presently working on a website but we need financial assistance for this to come to fruition so fundraising ideas are needed. As well, we will be commencing our awareness building initiatives for early next year very soon and could use help in this regard.

If you are unable to commit to time, perhaps you can commit to a donation OR helping to get the word out that we need financial assistance to get things moving forward. If you know of anyone that might be interested in helping us out financially, please feel free to connect us. Unfortunately, we cannot provide tax receipts at this time as we are not a registered charity (working on it).

We are not asking for a lot of time or effort, just what you feel like you can give. We understand that everyone is busy, but Nova Scotia has the highest rate of Lyme in the country and other tick-borne diseases, like Anaplasmosis, are steadily increasing as well in this province.

We need to do more to help educate the general public and health care providers.

Interested? You can respond to this post or find me on social media.

Tick-Borne Diseases in Nova Scotia/Canada – What’s Happening in 2025

It’s that time of the year when discussions are taking place regarding the various awareness initiatives that are going to occur, as well as determining what other initiatives are ongoing. In this regard, this is a good time to provide an update.

First of all, the Nova Scotia Lyme & Tick-Borne Diseases Association has now commenced regular monthly meetings. It is our intention to meet virtually the first Thursday of every month at 7pm. Unfortunately, we have had a recent resignation of a Board member who is leaving the province. If interested in being on the Board please reach out.

The NS Lyme Advocacy Group has started sitting in on the monthly meetings so that we are all working together toward common goals. As always, we are looking for help. Interested?

The Mission and Vision Statements of the Association are:

Mission Statement: To support, educate, and advocate for Nova Scotians by fostering awareness, providing resources, and promoting meaningful change in Lyme disease prevention and education through collaboration with Nova Scotia Health and other partners.”

Vision Statement: To be the trusted resource for Nova Scotians, fostering a comprehensive understanding of Lyme disease, prioritizing prevention through education, and expanding knowledge, awareness, and access to resources across the province.

Our two main initial goals are to complete a website and undertake fundraising. Funds are necessary to build/maintain the website and ensure that awareness initiatives can be undertaken. In this regard, we are looking for sponsorship/donations. If interested in helping us achieve our goals, please reach out to us. As well, if you know of groups, organizations, individuals, etc., that may be interested in helping out, please forward this information to them, or let us know who to contact.

We are now heavily involved with organizing the annual “Lyme Disease Awareness Month” proclamations and flag-raising’s for May. Four proclamations have now been received. Nova Scotia has proclaimed May as Lyme Disease Awareness Month; as well as the Town of Stellarton; the Cape Breton Regional Municipality; and the Municipality of the County of Colchester.

We have heard back from several municipal units that they will also be undertaking proclamations. As we have a more detailed list, I will continue to add the information in this document.

We also hope to have more buildings lit lime green this year to help raise awareness. If you have a building that you would like to light up green for all, or part, of May, the Pantone colour is Green: PMS 368c.

Two flag-raisings have been scheduled so far. The first one is at 9:00am, Thursday, May 1st at Halifax City Hall. The second is scheduled for 9:00 am, Saturday, May 3rd, at Province House. It would be very much appreciated if you could attend one, or both of these events. We need to show that this is an issue for many.

If you have a social media presence, even if it is a small one, please consider posting Lyme facts during the month of May. To help with that, the following is a blog entry that I did last year with enough facts about ticks and tick-borne diseases to take you through the month – https://shiningthelymelight.com/2024/05/09/lyme-disease-awareness-month-twitter-posts/.

The NS Lyme Advocacy Group helps organize and work on various initiatives. We could use a lot more hands on deck to help move things forward. Please reach out if interested in being involved. It’s not a large commitment. We could really use folks that would help out on behalf of people that are sick, rather than those that are sick trying to do too much.

The ongoing “Tick-Borne Diseases in Nova Scotia – Diagnosis, Treatment, Awareness Requirements” Petition was tabled in the NS Legislature on Wednesday, March 19th, by the Honourable Kim Masland, MLA for Liverpool, an area with a large number of people affected. The petition wording can be found in Hansard for Wednesday, March 19th – https://nslegislature.ca/legislative-business/hansard-debates/assembly-65-session-1/house_25mar19. This is a video of the tabling – https://www.youtube.com/watch?v=hF3BgwMBVTo&list=PLGn3UOvEam0vovpS9gdxnV_kAv8PSPvaD. It starts at approximately 19.23.

Now that the petition has been tabled, it would be a good time to follow up with letters/emails to your MLA requesting that they ensure that the petition Asks are undertaken. Briefly telling them your story and/or why you want to see that happen would be helpful.

This year a book was published called “Life With a Twist of Lyme – Hailey’s Story, a Mother’s Memoir” which is the true story of Hailey Kane, a young lady who shouldn’t have died at 17 years of age. This is a Nova Scotia story which should be read by everyone. It was written by Hailey’s mom, Susanne Kane. Although I knew some of the story because the Kane’s spoke in Wolfville, NS, a few years ago, the full story is truly unbelievable yet, to this day, there are people still going undiagnosed, misdiagnosed, or not adequately treated. Why?

This year also saw a death of a young man in NS who was battling “Post Treatment Lyme Disease Syndrome” or “Chronic Lyme”. Whatever you want to call it, he was originally misdiagnosed with Juvenile arthritis and eventually diagnosed with Lyme arthritis, treated, but still had lingering symptoms, as many can. Bradley Payzant died at the age of 28 from “health complications following Lyme disease” – https://www.arbormemorial.ca/en/atlantic-sackville/obituaries/bradley-a-payzant/137272.html. A little more on the misdiagnosis – https://acrjournals.onlinelibrary.wiley.com/doi/abs/10.1002/art.38498. Has much changed? Not really.

There are presently at least two Lyme/Tick-Borne Diseases surveys underway in Canada:

  1. The Canadian Lyme Coalition, a newly formed advocacy group, has prepared a Canadian Lyme Survey – https://forms.office.com/r/ywJJKXfEAF. This survey has closed and some information has been shared – https://canadianlymecoalition.ca/.
  2. The Lloyd Tick Lab at Mount Allison University is doing a study on how best to manage tick bites and Lyme disease – https://limesurvey.mta.ca/index.php/337623?land=en. I have asked why the link has “limesurvey” rather than “lymesurvey” but have not yet heard back.

There are also a number of research initiatives underway in Nova Scotia and Canada. The following may not be a complete list:

Part of the awareness initiatives undertaken by the Canadian Veterinary Medical Association includes – https://ticktalkcanada.com. This site has considerable information. As well, the CVMA’s National Tick Awareness Month initiative, that commences March 1st, ensures that discussions of ticks take place when they become more active.

I think it’s time to change Lyme Disease Awareness Month to earlier in the year, perhaps to coincide with the CVMA’s National Tick Awareness Month. Thoughts?

End of Year Review of the Lyme World – 2024

As 2024 comes to a close, I thought it would be a good time to update everyone on a few items that have been worked on this year, as well as provide some additional information.

First of all, the submission of our petition to the NS Legislature will be a few months later than intended, but it will still be happening. Our intention is to have it tabled in the spring. Therefore, if you are still helping to obtain signatures, you can send them off to me by late January, at the latest. If you would like to help obtain signatures, please reach out to me for the printable link. This time of year would be great to obtain more signatures as friends and family gather for the holiday season. As an FYI, as of December 16, 2024, I have 1,673 signatures in my possession. Way to go everyone!

I am pleased to advise that as of November, the Nova Scotia Lyme & Tick-Borne Diseases Association is an officially registered non-profit with a Board of six. We would still love to have representation from the veterinary and/or medical doctor areas so please give it some thought. The Board presently consists of: Lisa Ali Learning – President; Donna Lugar – Vice President; Alexandria Brinkhurst-Bauer – Secretary; Léna de la Loire – Treasurer; Scott Wilson – Director; and Claudette Garland – Director.

The new Association is already working on a website that will hopefully be up and running early in 2025. Please let us know if there is anything specific that you would like to see included. It will be meant for Nova Scotians, with a lot of Nova Scotia specific info; however, it will have helpful information for all.

The Association is also looking at ways to help finance all that we would like to work on so please let us know if you would like to help out, or have some insight in this regard. We could also use help with events, especially in the spring. Please let us know if interested. Many hands make light work!

The NS Lyme Support Group is still meeting monthly on the 2nd Tuesday of every month at 12pm, via Zoom. All are welcome. We are still using Zoom, which was started during the height of COVID, because people from all over the province, and elsewhere, are able to attend. It has worked very well for most. An in-person meeting in the Bedford area is still being looked into re day, time, and location.

I was recently interviewed for a CTV piece on ticks and tick-borne diseases. It’s great to see something out this time of year as many tend to forget that ticks can be active anytime temperatures allow. That includes in December, January, February, etc. Here is a link – https://www.ctvnews.ca/video/c3039531-ctv-national-news–lyme-disease-concerns-in-canada?__vfz=medium%3Dsharebar. I have been having difficulty getting it to run so you may have to Google it yourself for a better link.

During a recent NS Lyme Support Group meeting we discussed the fact that all medical school programs need to start looking at merging eastern and western medicine, or at least giving more consideration to eastern medicine. All doctors should be able to consider what is causing symptoms, rather than just looking at, and treating, all the individual symptoms. We also need to include prevention measures, such as diet, exercise, stress reduction, sleep quality/quantity, etc., within the medical school program.

We, as individuals, also need to take more control of our own health and stop totally relying on a medical professional that may have only received limited, or no, training on what is causing your ill health. Most mean well, but nobody has all the answers and they will never know as much as you do about your own body. Don’t listen if someone says that there is nothing wrong with you, that you are just getting older, you are not getting enough exercise, you are not socializing enough, you are not eating right, etc., etc., etc., especially if you have never had a conversation regarding your diet, social life, or exercise. I was told all of the above before finding out that I was dealing with tick-borne diseases.

Past blog entries include information on proper tick removal, prevention measures, boosting your immunity, etc., etc. Please take some time and educate yourself.

As the year comes to a close there is still no vaccine that would be effective for all tick-borne diseases that can potentially be transmitted; however, there are several different types of vaccines under development. An earlier post is available in this regard. In the interim, and even once available, prevention is key!

Don’t Get Complacent! Ticks Are Active!

After a fairly hot, dry, summer, we all may have gotten a little complacent as ticks weren’t as active as they were in the spring. However, now is not the time to forget to do tick checks and undertake tick bite prevention measures. Although ticks can now be active all year long, if temperatures allow, spring and fall is generally the most active time for adult blacklegged ticks – https://ticktalkcanada.com/seasonality-of-ticks/.

Prevention is key when it comes to tick bites as it can be hard for doctors to ascertain what tick-borne diseases you might be dealing with because of the variety of symptoms. In this regard, the following are some helpful suggestions to help avoid tick bites – https://www.canada.ca/en/public-health/services/diseases/ticks-tick-borne-diseases/prevent-tick-bites.html.

Unfortunately, even the most dedicated tick prevention person can miss a tick. Ticks are small; their bites tend to be painless; and they like to hide in warm, moist areas, that are generally harder to see. Although ticks can bite anywhere on your body, there is a “Top 10” list that includes: head and hair, in and around ears, back, under the arms, waist, belly button, around the groin, legs, behind the knees, and between the toes. Another fairly common spot is under a woman’s bra. There is no spot that is off limits.

If you do find an attached tick, proper removal is VERY important. You don’t want to panic and pull it off with your fingers. This could squeeze the body of the tick and force whatever it might be carrying to be transmitted into the host. The following is a good resource for proper tick removal – https://www.canada.ca/en/public-health/services/video/lyme-disease-properly-remove-tick.html.

Even if you know what kind of tick you found on you or a loved one, it is worthwhile to send photos to https://www.etick.ca/ as they map the location of all ticks found. As well, having the tick tested if it was engorged can provide useful information. Although not a diagnostic tool, it can provide valuable information as to what, if anything, the tick was carrying if symptoms arise. I am only aware of Geneticks (https://geneticks.ca/) that does tick testing in Canada. Unfortunately, it is a private company so there is a cost associated with having a tick tested. If financially able, I do suggest testing for more than just Lyme as ticks can be carrying a variety of things and it tends to be easier to find out what this way.

I think this is also a good time to remind people that although an erythema migrans (EM) Lyme rash is indicative of Lyme, not everyone gets a rash and many people don’t realize that there are a variety of forms. Although most are aware of the bull’s-eye version of an EM rash, they don’t realize that only a small percentage of people will actually get one that looks like a bull’s-eye. Other types of EM rashes are actually more common and can frequently be misdiagnosed due to this lack of knowledge – https://www.cdc.gov/lyme/media/pdfs/Wall-poster-The-Many-Forms-of-Lyme-Disease-Rashes-Erythema-Migrans.pdf.

I’ve been writing this blog for quite awhile now so there is a lot of information available if you wish to go back and review past posts. Some is Nova Scotia specific, but a lot is not. I’m also available to respond to questions and give presentations to groups.

A NS Lyme Support Group meeting is held the second Tuesday of every month at noon, via Zoom. A NS Lyme Advocacy Group has been active for a few years now and has organized events, met with politicians, etc. We are also looking for people willing to help.

We are also actively working on a Nova Scotia Lyme & Tick-Borne Diseases Association which should hopefully be officially up and running very soon. More on that in the coming months.

Enjoy the outdoors – safely. With mental health issues at a seemingly all time high, we all need that fresh air and sunshine.

Diagnosed Anaplasmosis Cases Are Rising

We have been hearing a lot more lately about Anaplasmosis and how it has increased significantly in Nova Scotia and other areas of Canada. With many doctors still unsure about Lyme, it’s time to chat a bit about Anaplasmosis as it is now reportable in Nova Scotia (and Canada), along with Babesiosis and Powassan virus.

Anaplasmosis is a disease caused by the bacteria A. phagocytophilum. These bacteria are spread to people by tick bites primarily from the blacklegged and western blacklegged ticks. Early signs and symptoms are usually mild or moderate and may include: nausea, vomiting, diarrhea, loss of appetite, fever, chills, severe headache, muscle aches. If treatment is delayed or if someone is immune compromised, Anaplasmosis can cause severe illness. Prompt treatment can reduce your risk of developing severe illness. Signs and symptoms of severe (late stage) illness can include: death, respiratory failure, bleeding problems, organ failure.

Although I know Anaplasmosis was found in dog ticks in Nova Scotia in 2017/2018, very few cases were reported in humans until recently. Researchers at Dalhousie University presented findings to the public at Lyme Disease Conferences in Halifax in both 2017 and 2018. Unfortunately we only have a link for the 2018 presentation – “Matthew Curry – Bacteria Prevalence of I. Scapularis and D. Variabilis in NS” –https://youtu.be/RDVE3C4QAIA?si=jmzV2CYfGkRUUBuW. Interesting to watch as it also mentions other things found in ticks that might be causing issues in this province.

This article is from November, 2019 and is mostly regarding Anaplasmosis in animals, although it touches on humans – https://www.saltwire.com/nova-scotia/news/anaplasmosis-tick-borne-disease-showing-up-in-nova-scotia-382205/. Animals have been diagnosed with Anaplasmosis for awhile now in the province. “The first confirmed case of Anaplasmosis in a horse occurred in 2009 – “https://novascotia.ca/dhw/cdpc/documents/Tick-Borne-Disease-Response-Plan.pdf‘. Perhaps there have been cases in humans for awhile as well, but we were not looking for it because of lack of knowledge.

Just like Lyme, Anaplasmosis cases must fit certain criteria before being recorded as an official case – https://www.canada.ca/en/public-health/services/diseases/anaplasmosis/health-professionals/national-case-definition.html. Just like Lyme, recorded cases are no doubt considerably less than actual cases, especially as knowledge is limited regarding the disease.

The following is helpful info for NS health care practitioners from Dr. Jennifer Cram, Provincial Medical Officer of Health, NS Health and Wellness- https://physicians.nshealth.ca/sites/default/files/2024-07/OCMOH%20Memo%20-%20Tick%20Borne%20Diseases%20Program%20Update%2020230724%20Final.pdf. I have been frequently told over the years that although doctors are provided with information on Lyme and tick-borne diseases, they may not be reading it, so take this with you to your doctor, just in case.

It is important to remember the ticks can carry a number of pathogens at one time, or separate from Lyme. Some can be transmitted very quickly so prevention, or prompt and correct removal, is key. Some helpful information in this regard:

Do daily tick checks!

A New “NS Lyme & Tick-Borne Diseases Association” In The Works

I have mentioned the need for a nonprofit Lyme Association in Nova Scotia in past blogs but I wanted to speak about just an Association today. As the province with the highest rate of Lyme and one of only a couple of provinces without a Lyme Association at the moment, it’s time.

Although the “Lunenburg Lyme Association” was in existence for a couple of years, and organized the Bridgewater Lyme Conference which was held in 2019, it has unfortunately ceased to exist. The need for a dedicated Association, providing information to the public and health care providers, has steadily grown. With the entire province now considered high risk, more needs to be done to ensure that residents, and visitors, are adequately educated.

Although we have a NS Lyme Advocacy Group and a NS Lyme Support Group, neither of these groups are organized in an official manner. A nonprofit would require a Board, thus providing some credibility when discussing issues with health care providers, politicians, etc.

These are a few of the things we see a Board, along with subcommittees, working on:

  • Development of a comprehensive website, with information on Lyme and tick-borne diseases. 
  • Provision of accurate, up-to-date, information to health care professionals through podcasts, interviews, Zoom presentations, etc. 
  • Organization of awareness/prevention events throughout the province, including those for Lyme Disease Awareness Month.
  • Undertaking fundraising through a variety of methods including, but not limited to – requesting donations from organizations and people; selling items such as garden flags, etc.; holding events such as a walk/kite flying event that would require sponsors; undertaking presentations to businesses/organizations; having a “gala” (which is a lofty goal); and more.
  • Involvement with health & wellness events throughout the province.
  • Organizing movie/documentary screenings.
  • Tick drags – for awareness/testing?
  • Pursue the implementation of the three Asks made to the provincial government. 
  • Development of a tick testing program in Nova Scotia, for all tick-borne diseases, not just Lyme. That may involve an expansion of Geneticks into the province, but it would be great to provide a free tick testing service.
  • Assist with more research. 

We presently have six people interested in being on the Board. However, to ensure that we include as many stakeholders as possible, and can have a quorum even if one or two people cannot attend a meeting, it would be beneficial to have at least two more Board members. It would be very helpful to have someone from the Veterinary and health care areas.

I believe that a Board would only need to meet once a month for one to two hours, preferably in the evening and via Zoom, or similar program. As Board members will reside throughout the province, virtual meetings make the most sense. Hopefully we could get together, in person, at least once a year.

Board members could be involved as much, or as little, as they want over and above the regularly scheduled Board meetings as there are a number of people interested in helping out, but not wanting to sit on a Board. These people will continue to be involved via subcommittees.

If interested in being involved, either on the Board, or helping with initiatives on subcommittees, please reach out to me via this site, or by email at donna.lugar@outlook.com. We would like to see the Board up and running prior to the end of August as we hope to have our on-going petition (more info on that in another blog post) presented to the NS Legislature during their fall sitting.

I realize that everyone is very busy but this is a very important initiative and a couple of hours of your time each month is not an unrealistic goal. If you can’t become involved at this time, please pass this information along to anyone you think might be interested.

What I Know, And Don’t Know, About Lyme Vaccines

First of all, yes there was once a Lyme vaccine – https://www.aamc.org/news/lyme-disease-rise-why-there-still-no-vaccine#:~:text=LYMErix%2C%20manufactured%20by%20what%20was,FDA%20approved%20it%20in%201998 and a bit more – https://thewalrus.ca/lyme-disease-vaccine/. At present, however, your dog can be vaccinated, but you cannot. It’s interesting that a Lyme vaccine is required if it’s rare, hard to get, and easy to treat, as some doctors will still say. Fortunately, many doctors are now acknowledging that it is a bigger problem then we were once told.

There are a variety of vaccines presently being developed. Some are for humans and some are for mice.

The chatter around Lyme disease vaccines is becoming greater lately. I’m sure it has nothing to do with the fact that Valneva/Pfizer are in Phase 3 of a Lyme vaccine – https://valneva.com/research-development/lyme-disease/; https://valneva.com/press-release/pfizer-and-valneva-complete-recruitment-for-phase-3-valor-trial-for-lyme-disease-vaccine-candidate-vla15/. It looks like it will be the first to market.

From what I have read, including this – https://valneva.com/press-release/valneva-announces-publication-of-lyme-disease-phase-2-trials-in-the-lancet-infectious-diseases/, this vaccine is only for Lyme disease. If that is the case, I do have some worries. What if you are bitten by a tick carrying something instead of, or along with, Lyme? Will the vaccine help, or hinder, diagnosis and treatment of any other potential tick-borne disease? Will it be 100% effective for Lyme? If not, will doctors say you don’t have Lyme because you were vaccinated? They frequently say you don’t have Lyme because the test was negative, even though there are several reasons for a false negative test.

There are actually a number of other human vaccines also in the development stage that I think might have value – https://igenex.com/tick-talk/recent-developments-in-lyme-disease-vaccinations-what-you-need-to-know/. However, these have the same questions as the one above as they are all Lyme related, as far as I can tell.

There is also work underway to vaccinate white-footed mice, a carrier of the Lyme bacteria – https://www.sciencenews.org/article/new-lyme-vaccine-mice-protect-humans & https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3610442/#:~:text=Oral%20vaccination%20of%20white%2Dfooted,burgdorferi%20infection (this is from 2013 and begs the question as to why something hadn’t been developed before now).

This is a bit more on another? vaccine – https://news.uthsc.edu/uthsc-researchers-lyme-disease-intervention-headed-to-market/, https://www.nature.com/articles/s41541-023-00802-y, and https://pubmed.ncbi.nlm.nih.gov/38360853/. This may be one already mentioned as some are quite similar.

This vaccine is confusing me a bit as most research starts with mice – https://www.the-scientist.com/newly-developed-mrna-vaccine-protects-against-lyme-disease-71477. I think it is eventually meant for humans – https://www.cell.com/molecular-therapy-family/molecular-therapy/fulltext/S1525-0016(23)00428-8?_returnURL=https%3A%2F%2Flinkinghub.elsevier.com%2Fretrieve%2Fpii%2FS1525001623004288%3Fshowall%3Dtrue.

When I first read about this – https://www.wired.com/story/pill-kills-ticks-lyme-disease-babesiosis-anaplasmosis/ – I immediately thought that I wouldn’t take anything that would kill ticks upon feeding. It would be similar to what dogs can be given apparently. They want the treatment to kill an attached tick within 24 hours of attaching and starting to feed as that is “generally” how long it takes a tick to transmit the Lyme bacteria. Unfortunately, things like Powassan virus can transmit in 15 minutes and less is known about how long it takes other things to be transmitted. So ick re putting something into you that can kill ticks upon a bite and what about the things that can be transmitted more quickly? Lyme can also occasionally be transmitted more quickly. What then?

I’m not a doctor, researcher, etc., yet I have many, many questions. I’m sure I’m not the only one. Perhaps someone more knowledgeable than I can provide input regarding the vaccines under development.

If I read everything correctly, none of the above will have a 100% guarantee that a tick bite will not result in the transmission of tick-borne diseases. Therefore, as always, prevention will be key. We need to learn to live with ticks by undertaking daily preventative measures. It’s a year-round issue in many parts of the world now, including in Nova Scotia. We can’t continue to put our head in the sand and say that it’s no big deal. It can be. It has been for many.

PLEASE take the issue seriously. Learn about the different tick-borne diseases. Educate yourself regarding signs and symptoms. Prevention is key!

Lyme Disease Awareness Month – May 2024

I read an article recently that I found very interesting. It was an interview in Psychology Today – https://www.psychologytoday.com/ca/blog/patient-revolution/202402/how-you-can-hack-your-own-healthcare-and-upgrade-your-life. The author, Ryan Prior, interviewed Susannah Fox, who wrote “Rebel Health: A Field Guide to the Patient-led Revolution in Medical Care. Although I haven’t read the book yet, I hope it opens the eyes of people who are making health decisions without actually speaking and listening to those intimately affected. Although this has nothing, and everything, to do with Lyme Disease Awareness Month, I wanted to open with this and ask people to think about the fact that Lyme and Tick-Borne diseases seems to be an area, at least in Canada, where decisions are frequently being made without including the input of those with lived experience, and/or keeping them in the loop as to what is happening. Why?

Now on to what is happening in Nova Scotia for Lyme Disease Awareness Month. First of all, I am happy to advise that the Province has, once again, proclaimed May as Lyme Disease Awareness Month. This is great; however, there usually isn’t much fanfare about it. Since COVID, the proclamation has not been read in the Legislature. They also have not done a Press Release in the past to help get the word out. It seems to be up to myself and others personally dealing with the issue to share on social media. If you can, please help get the word out.

I am also very happy to advise that there will once again be two flag-raisings for Lyme Disease Awareness Month. Both will occur on May 2nd in Halifax. The first is at 8:30 am in Grand Parade at Halifax City Hall. The second will be at 10:00 am at Province House. Would love to see lots of people in attendance. It is very difficult to convince the powers that be that this is an important issue when only a few people attend these events. As far as I can determine, we are the only place, in the world, to have flag-raisings for Lyme Disease Awareness Month. How cool is that?

I have also started receiving responses back from municipal units throughout the province that will either be proclaiming May as Lyme Disease Awareness Month, or will at least have the topic on their Agenda for possible approval. As well, at least five properties will be lit lime green for all, or a portion of, May:

  • Province House, lime green for one night, May 2nd, to coincide with flag raising
  • Halifax City Hall, lime green for one night, May 2nd, to coincide with flag raising
  • Municipal Services Building, Municipality of the District of Lunenburg, first week of May
  • New Glasgow Town Hall will be lit for most, if not all, of the month of May
  • Town of Bridgewater Tower Window will be lit lime green the first week of May

As I hear back from more locations I will continue to update the information.

Another way I try to raise awareness during the month of May is to “dress” my house in lime green. Last year I purchased a Lyme Disease Awareness Month garden flag to ensure my neighbours know exactly why I have added lime green accents for the month. It may only reach a few people, but even if it helps just one person to remember to take the necessary precautions, then it has done its job. Please consider dressing your house, and/or yourself, with a touch of lime green for the month of May and let people know why. Share widely on social media.

I will also be tweeting daily facts about ticks and tick-borne diseases during May. If on Twitter, please like, comment, share, etc.

This time of year tends to be the time that some people, although well intentioned, will share incorrect information on tick removal, the erythema migrans (EM) rash, etc. The federal government has a good video regarding tick removal – https://www.canada.ca/en/public-health/services/video/lyme-disease-properly-remove-tick.html. This is a good infographic from the CDC regarding possible EM rashes – https://www.cdc.gov/lyme/resources/NCEZID_rash_poster3r1-508.pdf. The better known bull’s-eye version of the EM rash is actually seen in only a small percentage of cases. Other types are more common. As well, not everyone gets (or sees) a rash.

If looking for a Lyme prevention video, the Lunenburg Lyme Association had two made in 2019:

If you are out and about and see the new provincial Tick Awareness signage at provincial parks, please take a photo and share. You would be surprised how many people don’t take the issue seriously and do not undertake preventative measures when they are out and about in nature. All of Nova Scotia is considered endemic and Nova Scotia has the highest rate of Lyme in Canada. It also has one of the highest rates in all of North America. Everyone needs to take it seriously.

Lyme Disease Awareness Month is also a good time to obtain signatures on our petition (previous post). In this regard, someone much more computer savvy than I has been able to provide a link to the petition to make it a bit easier to print it off – https://drive.google.com/file/d/101FpHegvu5OoHZCriuFS0pwl–UUmzLE/view. Please do not alter it in any way. Alternatively, you can email me at donna.lugar@outlook.com and I can mail you some copies or the link. Once you have obtained as many signatures as you can you can contact me to make arrangements for me to receive them.

Please don’t forget, as well, that we have a Change.org petition (https://chng.it/6GJj52y2ts) as well in order to obtain comments on why people are signing. Although the online petition cannot be submitted, the comments will be very helpful.

We will hopefully be having other events over the next little while so I will keep updating this post.

A New Nova Scotia Lyme Petition – Tick-Borne Diseases in Nova Scotia: Diagnosis, Treatment, Awareness Requirements

In early 2020 the NS Lyme Advocacy Group prepared a petition to be submitted to the NS Legislature. Unfortunately, the onset of COVID resulted in the demise of that petition. However, it has recently been restarted, with a few necessary updates.

Unfortunately, the NS Legislature does not permit electronic petitions. All petitions must bear original signatures of Nova Scotians and each page must include the full wording of the request for action. Our petition is quite wordy so only five signatures are possible on each page. This will hopefully result in a large stack of pages being provided to the NS Legislature.

Although our original intention was to have it tabled during the Fall sitting of the NS Legislature, we were unable to do so due to the early start and short length. Therefore, we are now hoping to table it during the next sitting, if at all possible. This delay allows us to continue to obtain signatures on the petition. As of October 8, 2024, I have over 1,000 signatures in my possession, with many more already obtained, but not received by myself. If you haven’t had a chance to sign the petition and/or want to help obtain signatures, please reach out to me. Contact info is below.

Although the requirement for original signatures does make it harder to obtain a large number of names, it is doable if we have a lot of help. People can go door to door; ask local businesses to have one available for signing; attend local markets/events; or just get friends and family to sign. If located in Nova Scotia and interested in helping to obtain signatures you can either print the petition – https://drive.google.com/file/d/101FpHegvu5OoHZCriuFS0pwl–UUmzLE/view or you can email me at donna.lugar@outlook.com with your address and I can send you copies of the petition. If you print them off yourself to drop off at local businesses, we have made a “poster” that can go with them. Let me know if you would like to receive a copy by email or mail.

We feel that this petition is important because:

  • many people are struggling in this province with a later stage of Lyme;
  • there are many people that reach out that tell us that their doctor told them that they don’t know much about Lyme and Tick-Borne diseases;
  • some things are being done by the government/NS Health without consulting those with lived experience resulting in concerns;
  • many doctors still believe that they must follow the IDSA Lyme Guidelines, rather than review all guidelines available and work with their patient;
  • information is generally only provided by NS Health on social media during May and sometimes sporadically at other times, even though ticks can be active any month of the year;
  • when government changes, politicians that spoke out a lot about the issue before they were in power become weirdly quiet.

The following is the wording:

We, the undersigned residents of Nova Scotia, hereby petition the Nova Scotia Legislative Assembly to act upon our concerns with regard to tick-borne infections in this province.

WE ASK THAT THE GOVERNMENT:

  1. COMPLETE the three ASKS of the NS Lyme Disease Advocacy Group as presented to the PC Caucus in February of 2022. The three ASKS were:

– Adequate Education for all health care providers and residents.

– Development of a Dedicated Tick-Borne Diseases Care Clinic.

– Formation of a Non-Partisan Task Force, including those with lived experience.

2. UNDERTAKE a YEAR ROUND awareness campaign, such that ALL Nova Scotians, and visitors to the province, are informed about ticks, 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, that a negative ELISA does not mean that you do not have Lyme disease or another tick-borne disease, etc.

3. INCLUDE in the “Guidance for Primary Care and Emergency Medicine Providers in the Management of Lyme Disease, Human Granulocytic Anaplasmosis, Babesiosis and Powassan virus infection in Nova Scotia”, the following disclaimer 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 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 electronic petitions are not allowed, we have prepared a Change.org petition to go along with, and promote, the paper one. The ability to comment as to why you are signing is huge. Please consider adding your reason. We hope that many people will sign both the paper copy, and sign and comment on the Change.org petition. It can be found here – https://chng.it/v2q2JvcgPY.

If you are unable to help obtain signatures, please consider sharing this info as the more people involved, the better. We need to finally show the NS government that this issue is of concern to many.

Could It Be Lyme And/Or Other Tick-Borne Diseases?

For those of us that have been dealing with Lyme and Tick-Borne Diseases (TBDs) for a long time, we usually see similarities in others all the time. Whether their symptoms are TBD related, or not, is sometimes hard to determine because of all the symptom overlaps. As well, present testing for TBDs is not 100% accurate and can result in false negatives. In this regard, I thought I would post a few diagnoses and symptoms that can be TBD related, with some research/info for people to read, if interested.

TBDs have been around for a VERY long time now and could very well be a direct cause of a lot of present day things. The Lyme bacteria, Borrelia burgdorferi (Bb), was found in Otzi the Iceman (“U of T researchers find that ancient Iceman’s infection helps Lyme disease bone loss discovery” - https://www.utoronto.ca/news/u-t-researchers-find-ancient-iceman-s-infection-helps-lyme-disease-bone-loss-discovery#:~:text=Named%20after%20the%20%C3%96tzal%20Alps,resided%20deep%20in%20%C3%96tzi’s%20bones.) and in Amber (“Amber discovery indicates Lyme disease is older than human race” – https://today.oregonstate.edu/archives/2014/may/amber-discovery-indicates-lyme-disease-older-human-race).

If you are dealing with one, or more, of the following issues, and they vary from day to day (which is common in TBDs), you may want to do some further research on whether TBDs could be the root cause.

DIGESTIVE ISSUES – TBDs can cause a lot of digestive issues – “The many manifestations of a single disease: neuroborreliosis” – https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7850350/; “The Spectrum Of Gastrointestinal Manifestations In Lyme Disease” –https://journals.lww.com/jpgn/fulltext/1999/10000/the_spectrum_of_gastrointestinal_manifestations_in.50.aspx; and “Gastrointestinal and Hepatic Manifestations of Tickborne Diseases in the United States” – https://academic.oup.com/cid/article/34/9/1206/462641l_manifestations_in.50.aspx; “Lyme disease, a Root Cause of Inflammatory Bowel Disease: A Case Report of Successful Treatment and Remission” – https://www.elliotdinetz.com/post/the-borrelia-species-is-recognized-to-cause-a-myriad-of-non-specific-symptoms-among-lyme-patients-it-has-also-been-documented-in-the-literature-to-have-the-ability-to-incite-autoimmune-responses.

MENTAL HEALTH ISSUES – a number of mental health issues have now been recognized as potentially having TBDs as a root cause. Here is just a bit of info – “Unraveling the mystery of Lyme disease” – https://www.apa.org/monitor/2022/06/feature-lyme-disease; “Lyme Disease Heightens Risk of Mental Disorders, Suicidality” –https://www.columbiapsychiatry.org/news/lyme-disease-heightens-risk-mental-disorders-suicidality; “Lyme Borreliosis and Associations With Mental Disorders and Suicidal Behavior: A Nationwide Danish Cohort Study” –https://ajp.psychiatryonline.org/doi/10.1176/appi.ajp.2021.20091347. Dr. Brian Fallon is one of the foremost doctors on this topic and speaks about the issue openly.

FACIAL/BELL’S PALSY – Although Bell’s Palsy can be caused by other issues, it can be a fairly frequent symptom of Lyme disease – “Characteristics and outcome of facial nerve palsy from Lyme neuroborreliosis in the United States” – https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8791801/; “Lyme Disease and Facial Paralysis” – https://www.facialparalysisinstitute.com/conditions/lyme-disease/#:~:text=In%20certain%20cases%2C%20Lyme%20disease,Swollen%20lymph%20nodes.

OTHER NEUROLOGICAL ISSUES – Although Facial Paralysis/Bell’s Palsy is one of the more common neurological issues that can be caused by the Lyme bacteria, other issues are also possible – “Lyme Neuroborreliosis: Mechanisms of B. burgdorferi Infection of the Nervous System” – https://www.mdpi.com/2076-3425/11/6/789; “Common Neurologic Features of Lyme Disease That May Present to a Rheumatologist” – https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10146759/.

HEART ISSUES – Lyme carditis is getting much more common than it was in the past, or perhaps it’s just being diagnosed correctly more now. Dr. Adrian Baranchuk in Kingston, Ontario, is one of the best known for his knowledge on Lyme carditis. He has written papers, a book, and speaks frequently on the issue. Here is just a bit of the information available – “GLA Podcast: Interview With Leading Expert on Lyme Carditis, Dr. Adrian Baranchuk” – https://www.globallymealliance.org/blog/interview-with-leading-expert-on-lyme-carditis-dr.-adrian-baranchuk; “Diagnosis and Treatment of Lyme Carditis: JACC Review Topic of the Week” – https://www.sciencedirect.com/science/article/pii/S0735109718394427?via%3Dihub; “Lyme carditis and atrioventricular block” – https://www.cmaj.ca/content/190/20/E622.full; “Fatal Lyme carditis presenting as fluctuating high-grade atrioventricular block” –https://www.cmaj.ca/content/192/21/E574%20; “Looking at Lyme carditis with Dr. Adrian Baranchuk” – https://www.lookingatlyme.ca/2021/10/41-looking-at-lyme-carditis-with-dr-adrian-baranchuk/.

JOINT ISSUES – Lyme arthritis can be misdiagnosed as Juvenile arthritis, and more. Lots of information available, but a lot of it is older. More research and information is needed. Here is a small sample of what is available – “The Importance of Differentiating Oligoarticular Juvenile Idiopathic Arthritis From Lyme Arthritis in Pediatric Patients” –https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9856232/; “Treatment of Lyme Arthritis” – https://www.jrheum.org/content/46/8/871 (it is interesting to note that this was written in 2019 and there were still many unanswered questions regarding treatment); “Clinical characteristics, treatment and outcome of children with Lyme arthritis in Nova Scotia” –https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4614091/ (it is interesting, and unfortunate, to note that at least one of the misdiagnosed children has since had a knee replacement in their teens).

EYE ISSUES – “Did you know that Lyme disease can affect your eyes?” – https://www.hopkinslyme.org/lyme-disease-awareness/did-you-know-that-lyme-disease-can-affect-your-eyes/; “Ocular Involvement in Lyme Disease” – https://www.aao.org/education/current-insight/ocular-involvement-in-lyme-disease

DENTAL ISSUES – “Why dental professionals should know about the signs and symptoms of Lyme disease” – https://www.dal.ca/news/2021/02/19/-why-dental-professionals-should-know-about-the-signs-and-sympto.html; “Orofacial Manifestations of Lyme Disease: A systematic review” – https://jdh.adha.org/content/95/4/23.

HEARING ISSUES – “Study finds hearing loss and Tinnitus common in patients with Tick-Borne Diseases” – https://danielcameronmd.com/study-finds-hearing-loss-tinnitus-common-patients-lyme-disease/; “Association between Sudden Sensorineural Hearing Loss and Lyme Disease” – https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7962810/.

BLADDER ISSUES – “Urinary Dysfunction in Lyme Disease” – https://www.sciencedirect.com/science/article/abs/pii/S002253471735989X#:~:text=We%20observed%20that%20the%20urinary,spirochete%20was%20documented%20on%20biopsy; “Lyme Disease and Interstitial Cystitis” – https://www.ic-network.com/lyme-disease-interstitial-cystitis/.

So many symptoms can be attributed to TBDs that it is impossible to mention them all here. With all the overlap with other possible illnesses one can see how difficult it is to determine whether you are dealing with TBDs or something else entirely, or both. Remember, a negative Lyme test does not mean you do not have Lyme and/or other TBDs. Only you know your body and how it is feeling. While doctors tend to diagnose based upon objective symptoms, TBDs can cause a huge assortment of subjective symptoms. With limited time available to discuss an assortment of symptoms, it can be almost impossible to obtain a correct diagnosis. Since early treatment is key, we need to trust ourselves. As a helpful tool for medical professionals, Dr. Brian Fallon, and others, prepared an excellent diagnostic tool. The General Symptom Questionnaire-30 (GSQ-30) – https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6908481/. If your doctor is open to the topic of Lyme, let them know about this tool.

I’m going to also dive into a few things, with similar symptoms, that could be as a direct result of TBD’s and/or a misdiagnosis. There are many more.

FIBROMYALGIA – Could Fibromyalgia actually be TBDs? When you look at the symptom lists on the CDC website for both Fibromyalgia and Lyme Disease, the similarities are quite substantial – https://www.cdc.gov/arthritis/types/fibromyalgia.htm and https://www.cdc.gov/ticks/tickbornediseases/lyme.html#:~:text=Signs%20and%20Symptoms&text=Fever%2C%20chills%2C%20malaise%2C%20fatigue,Lymphadenopathy. Better testing would help resolve this question.

ME/CFS – “Could ME/CFS be caused by undiagnosed Lyme disease or other bacterial infections?” – https://www.meresearch.org.uk/could-me-cfs-be-caused-by-undiagnosed-lyme-disease-or-other-bacterial-infections/; “Posttreatment Lyme disease syndrome and myalgic encephalomyelitis/chronic fatigue syndrome: A systematic review and comparison of pathogenesis” – https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10497844/; “Is There A Link Between Lyme Disease and Chronic Fatigue Syndrome?” –https://www.contagionlive.com/view/is-there-a-link-between-lyme-disease-and-chronic-fatigue-syndrome.

MS – It is interesting to note that Lyme disease is one of the conditions to rule out prior to a diagnosis of MS, yet there is no definitive test for Lyme – “Lyme Disease Versus Multiple Sclerosis” – https://www.nationalmssociety.org/Symptoms-Diagnosis/Other-Conditions-to-Rule-Out/Lyme-Disease#:~:text=Difference%20in%20the%20causes%20of,result%20of%20a%20tick%20bite; ’Lyme Disease or Multiple Sclerosis? Two cases with overlapping features.” –https://jicna.org/index.php/journal/article/view/jicna-2018-112. At one time an MS diagnosis was an MS diagnosis. Now, there are several different syndromes – “Types of Multiple Sclerosis” – https://www.nationalmssociety.org/What-is-MS/Types-of-MS#:~:text=Four%20disease%20courses%20have%20been,secondary%20progressive%20MS%20(SPMS). Perhaps this is because some are actually TBDs. More research is required.

SARCOIDOSIS – Apparently, the exact cause of sarcoidosis is unknown. A type of autoimmune disease? Could Borrelia burgdorferi be a trigger? Here is some reading: “Systemic Sarcoidosis Associated with Exposure to Borrelia burgdorferi in a 21-Year-Old Man” – https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6346892/; “Concomitant Lyme Disease and Sarcoidosis in a Patient With Advanced Degree Heart Block” – https://www.jacc.org/doi/10.1016/S0735-1097%2822%2903439-8#cestitle40; “Treating Left Ventricular Hypertrophy With Antibiotics:Disseminated Lyme Disease as a Sarcoidosis Mimic” – https://www.jacc.org/doi/10.1016/S0735-1097%2823%2902950-9; “Lingering Questions About Lyme Disease” – https://sarcoidosisnews.com/columns/lyme-disease-connection-questions/.

THYROID DISEASE(S) – As someone that was diagnosed with Hypothyroidism back in 2020, with no resolve of symptoms although having been prescribed Synthroid, I do believe that my symptoms could be attributable to Lyme and/or TBD’s. We will probably never know at this point. Here is some reading on the issue: “Coexisting Thyroiditis and Carditis in a Patient With Lyme Disease: Looking for a Unifying Diagnosis” – https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9363512/; “It’s Tricky-How to Diagnose & Treat Low Thyroid” – https://www.treatlyme.net/guide/hypothyroidism-lyme-disease. There is a lot more but it’s mostly by doctors that treat. Worth investigating if you have been diagnosed with a thyroid disorder and medication isn’t helping with symptoms.

LICHEN SCLEROSUS – yet another diagnosis with unknown etiology. Here is some info: “Possible Role of Borrelia burgdorferi Sensu Lato Infection in Lichen Sclerosus” – https://jamanetwork.com/journals/jamadermatology/fullarticle/419698; “Lichen sclerosus et atrophicans, scleroderma en coup de sabre and Lyme borreliosis” – https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4211521/; “Link between Lichen Sclerosus and Borrelia burgdorferi infection” – https://www.bmj.com/rapid-response/2011/11/02/link-between-lichen-sclerosus-and-borrelia-burgdorferi-infection. There are also articles suggesting that there is no correlation so it’s worth reading more than what’s noted above.

As you can see, Lyme is not always just a rash and flu-like symptoms. Many cases are not diagnosed until the Late Disseminated stage, if diagnosed at all. There are a number of reasons why many people do not get diagnosed and treated appropriately. I won’t go into them all here but have touched on many in past blog posts. I have also touched on some of the above in past posts as well; however, I thought it was a good time to pull this information together.

Doctors are not infallible. Many know a little about a lot, but most do not know everything about anything. With TBDs, new information is coming out on a daily basis and can frequently contradict earlier research. Just because your doctor(s) say something, it may not necessarily be correct. Remember that.