Tag: lyme-disease

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

In November of 2024 the Nova Scotia Lyme & Tick-Borne Diseases Association was officially formed. 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. However, 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 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 presently have someone building us 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; however, depending upon the amount received, we may be able to arrange for one.

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 one of the highest rates of Lyme in the country and other tick-borne diseases, like Anaplasmosis, are steadily increasing in the 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 Google.

Food Can Impact Your Lyme Journey

Two people reached out to me recently that were being treated for Lyme disease. Both wanted to know more about what they should, and should not, be eating, especially while taking antibiotics. As I went searching for information for them, I realized that there wasn’t really a comprehensive list available on-line. There are a number of books that speak about a “Lyme diet”, talk about healing through nutrition, etc., but there wasn’t any one link that I could provide. Therefore, I thought I would provide as much information as possible here.

The following are a few links with very useful information and are also informative websites:

You can usually reduce some symptoms with diet and supplementation; however, everyone is different and what works for one may not work for another. One of my blog entries from a few years ago included some information regarding supplements that some people take, as well as other things people have tried during their journey to wellness. In case you haven’t read it, here it is again – https://shiningthelymelight.com/2021/01/14/there-is-lower-cost-help-for-the-rich-mans-illness/.

We can only do what we can do. Always! Healthy food tends to cost more and many people do not have the money to be able to purchase a lot of what is recommended. Preparing food can also take up all your energy or you may not have the energy necessary to prepare a meal.

This information is for assistance only. It’s not meant to be strictly followed.

If you can make small changes to your diet, supplementation, routine, etc., that will help build up your immune system, then do whatever you can do. We do have more control than we realize over how we deal with tick-borne diseases.

Once we take some control over what we put into our bodies, our mental health also usually improves, a least a bit. A positive mindset is also very helpful while dealing with tick-borne diseases. It can be hard to be positive when you feel awful, but once you know that you can take some control, especially if you don’t have a Lyme literate doctor, you should see some reduction in symptoms.

Baby steps.

Number of Ticks Being Seen This Year is Scary

I don’t know about you but I have been seeing a large number of posts this year regarding the number of ticks being seen; in places never seen before; and in an abundance that is terrifying to those of us that appreciate what a single tick bite can do if that one tick is carrying disease(s). Unfortunately, this increase does tend to happen after winters/springs that help ticks to survive and flourish.

Have you seen the posts, mostly by Vet Clinics, regarding ticks that have been in containers for month and then lay eggs? Thousands of eggs? Ticks are gross AND can be very dangerous.

The percentage carrying disease is also increasing with some areas having upwards of 70-80% carrying disease. Are you doing everything you can to try to prevent a tick bite? If not, please start.

Because some social media in Canada no longer allows links to news articles, many great articles are being missed unless you search for them on a regular basis. I do want to reiterate; however, some of the below mention the bull’s-eye “target” version of the erythema migrans (EM) Lyme rash. That particular version of the EM rash is seen in a minority of cases. Other rashes are actually more common. A bit more on that here – https://www.hopkinslyme.org/lyme-disease-awareness/lyme-disease-rash-presentations-may-not-be-what-you-think/.

The recent post by Justin Timberlake advising that he has Lyme disease has resulted in a lot of press as well.

Here are just a few that have been published over the last few months:

  • Makes sense to me that preventing a tick bite; reducing tick numbers; and stopping the tick from transmitting anything (not just Lyme) is the way to go. A vaccine for just one tick-borne disease might make people too lax in preventative measures, in my opinion – https://www.sciencefriday.com/articles/tick-vaccine/.

These are just a sampling. With social media algorithms, limitations, etc., we are only seeing a small amount of what is being printed/posted. We need to help get this information out to a wider public, but how?

Thoughts on the best ways to increase the knowledge of everyone? Would love to hear from folks.

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.

Nova Scotia Pharmacists Can Now Diagnose/Treat Early/Acute Lyme

As of May 1, 2024, Nova Scotia Pharmacists have been able to diagnose and treat Early/Acute Lyme disease. The following is from the Nova Scotia College of Pharmacists website under “Notices”:

“Effective May 1, 2024, pharmacists will be authorized to assess and prescribe for the treatment of early Lyme disease. For clarity, this is in addition to the existing authority to prescribe chemoprophylaxis for the prevention of Lyme disease. Of note:

  • The standards set out:
  • PANS will host an education session on assessing and prescribing for early Lyme disease with Drs. Tasha Ramsey and Emily Black at 7:00 PM on May 7, 2024. For more information and to register, please click on the appropriate link below:
  • PANS has been working with the Department of Health and Wellness on funding for this prescribing, with an expected announcement in May.”

As it is now June 24th and I have yet to see an announcement, I believe it is due to the fact that funding has not yet been finalized for all pharmacies. I have heard via two pharmacists now that some pharmacies are free for this service and some charge. The fee is fairly nominal but is apparently resulting in an announcement not yet being made.

I am given to understand that a person needs to have an erythema migrans (EM) rash for diagnosis so this will continue to eliminate a certain percentage of the population that do not get, or see, a rash, from receiving a prompt diagnosis. As well, I hope that pharmacists have been adequately trained on what constitutes an EM Lyme rash. Some helpful information – https://www.aad.org/public/diseases/a-z/lyme-disease-signs; https://www.cdc.gov/lyme/signs-symptoms/lyme-disease-rashes.html; and https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9687974/.

Pharmacists are also required to utilize the NS Lyme Guidelines as prepared by the NS Infectious Disease Expert Group – https://novascotia.ca/dhw/cdpc/documents/statement-management-ld-hga-b-pvi.pdf. Unfortunately, these guidelines recommend following the IDSA Lyme Guidelines – https://www.idsociety.org/practice-guideline/lyme-disease/ – even though the IDSA Lyme Guidelines include a disclaimer under the Notes section that they are guidelines only, are voluntary, and do not supplant physician judgement. The fact that there are at least three other Lyme guidelines available for use is not mentioned.

The three other Lyme guidelines are:

The other issue, of significant note, is that ticks can transmit other things along with, or instead of, Lyme. Hopefully people receiving a diagnosis and treatment of Lyme will be adequately educated on the fact that they should keep note of any new symptoms that might occur and to ensure follow-up if they do have some.

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 Twitter Posts

I have used a variety of ways to help get the word out about ticks and tick-borne diseases. One of the ways is via Twitter. For the month of May I am, once again, posting a daily post on Twitter. I am going to post them all on here as I post them on Twitter, in case anyone wants to use them on their social media.

Day 1 – Do you know how to properly remove a tick? If not, check out this video – https://www.canada.ca/en/public-health/services/video/lyme-disease-properly-remove-tick.html.

Day 2 – The erythema migrans (EM) Lyme rash can have many forms. It doesn’t always look like a bull’s-eye – https://www.cdc.gov/lyme/resources/NCEZID_rash_poster3r1-508.pdf. (Since this post, I received info from Johns Hopkins about the erythema migrans rash – https://www.hopkinslyme.org/lyme-disease-awareness/lyme-disease-rash-presentations-may-not-be-what-you-think/.

Day 3 – Due to tests that are not 100% accurate, Lyme is supposed to be a clinical diagnosis, with testing supplemental – https://www.canada.ca/en/public-health/services/diseases/lyme-disease.html. This tool is also helpful – https://cep.health/clinical-products/early-lyme-disease/.

Day 4 – Prevention is key when it comes to tick bites. Do you know what to do? Here are some helpful “Tick Bite Prevention” suggestions – https://youtu.be/IorSOPnAnZw?si=umTWcR-8QbIoL6XW.

Day 5 – Lyme carditis is when the Lyme bacteria, Borrelia burgdorferi, attacks the heart. Cases increasing. Dr. Adrian Baranchuk has been trying to raise the alarm – https://www.sciencedirect.com/science/article/pii/S0735109718394427?via%3Dihub; https://www.lookingatlyme.ca/2021/10/41-looking-at-lyme-carditis-with-dr-adrian-baranchuk/.

Day 6 – “Because neurologic involvement in Lyme disease is so common, recognition and timely treatment should be encouraged.” – https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10146759/.

Day 7 – “Individuals diagnosed with Lyme borreliosis in the hospital setting had an increased risk of mental disorders, affective disorders, suicide attempts, and suicide.” – https://ajp.psychiatryonline.org/doi/10.1176/appi.ajp.2021.20091347?url_ver=Z39.88-2003&rfr_id=ori:rid:crossref.org&rfr_dat=cr_pub%20%200pubmed.

Day 8 – The Canadian Association of Schools of Nursing (CASN) has created a Vector-Borne Diseases E-Resource – https://vbd.casn.ca/. It’s free & can be used by anyone who wishes to learn more.

Day 9 – Why? “The newly revised Nova Scotia Lyme disease provincial case definition is no longer aligned with the 2016 Lyme disease national case definition.” – https://www.canada.ca/en/public-health/services/diseases/lyme-disease/surveillance-lyme-disease.html.

Day 10 – Canada has one of the highest rates of MS in the world. Lyme disease is supposed to be one of the things to rule out. How, when tests are not 100% accurate? https://mscanada.ca/intro-to-ms/diagnosing-multiple-sclerosis#toc–conditions-to-rule-out-.

Day 11 – Lyme & Fibromyalgia can have very similar symptoms. One doesn’t have a test & one has a test that isn’t 100% accurate. Hmmmm! https://www.cdc.gov/lyme/signs_symptoms/index.html, https://www.cdc.gov/arthritis/types/fibromyalgia.htm

Day 12 – Did you know that it’s not just blacklegged ticks, and not just Lyme, that you need to worry about – https://www.cdc.gov/ticks/about/index.html.

Day 13 – The annually reported Canadian confirmed/probable Lyme case numbers are not a true representation of total cases. What is the actual #? We don’t know. Read – https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6315539/ & https://bmcpublichealth.biomedcentral.com/articles/10.1186/s12889-019-7219-x.

Day 14 – It truly is and I wish I knew why – “I realized that there’s this public health debacle around Lyme, and it’s, for lack of a better word, obscene,” Tal says. – https://www.technologyreview.com/2024/02/28/1087617/tackling-long-haul-diseases/.

Day 15 – Multidisciplinary health centres have opened in several locations in Europe for Tick-borne diseases. Needed elsewhere – as long as drs. adequately trained in the topic. This is interesting – https://bmcinfectdis.biomedcentral.com/articles/10.1186/s12879-024-09194-3#:~:text=Most%20of%20the%20patients%20(84.8,accepted%20their%20diagnoses%20%5B16%5D.

Day 16 – Consider landscaping to reduce the number of ticks in your yard – https://novascotia.ca/dhw/cdpc/documents/Landscape-Management-Handbook.pdf.

Day 17 – If struggling with symptoms, look at your diet. It can play a huge part in causing/reducing symptoms – https://rawlsmd.com/health-articles/best-diet-lyme-disease; https://www.globallymealliance.org/blog/the-lyme-diet.

Day 18 – “Ongoing surveillance, increased awareness, and education should be encouraged to better define and understand the changing epidemiology of tickborne diseases in Atlantic Canada.” – https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9155882/.

Day 19 – If you have a # of symptoms, affecting multiple systems, that come & go, & vary day by day, you might be dealing with tick-borne diseases. These are worth checking out – https://restorativehealthclinic.com/wp-content/uploads/2017/11/Horowitz_LymeDiseaseQuestionnairev.pdf; https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6908481/.

Day 20 – If you want to know tick type, there are several reputable places to find out. In Canada, https://www.etick.ca/ is a great resource. Different ticks can carry different things. Not just Lyme. Not just blacklegged ticks.

Day 21 – The IDSA Lyme Guidelines, which doctors are frequently told to follow, have a Note advising that following the Guidelines is voluntary – https://www.idsociety.org/practice-guideline/lyme-disease/#Notes.

Day 22 – Tick testing is only available in Canada via a private company (I think) – https://geneticks.ca/. I highly recommend testing for more than Lyme as TBD’s increasing. Although not a diagnostic tool, it can be helpful.

Day 23 – “Chronic Lyme” – Is it real? – https://www.columbia-lyme.org/chronic-symptoms; and https://www.technologyreview.com/2024/02/28/1087617/tackling-long-haul-diseases/. (There is more.)

Day 24 – There may come a time when employees blame their employer for their illness due to lack of information/protection. FYI – Permethrin uniforms/gear help – https://cupe.ca/ticks-and-tick-borne-illnesses.

Day 25 – Anaplasmosis cases are steadily rising, do you know what it is? – https://nccid.ca/debrief/anaplasmosis/; https://www.cdc.gov/anaplasmosis/about/index.html; https://www.canada.ca/en/public-health/services/diseases/anaplasmosis/health-professionals/national-case-definition.html.

Day 26 – Although still fairly rare, as far as we know, Powassan virus is a potential tick-borne illness, that can transmit quickly. Learn about it – https://www.cdc.gov/powassan/about/index.html#:~:text=Powassan%20virus%20is%20spread%20to,to%20treat%20Powassan%20virus%20disease; and https://www.canada.ca/en/public-health/services/diseases/powassan-virus/risks.html.

Day 27 – Although Bartonella has been found in ticks, debate continues as to whether it transmits – https://www.columbia-lyme.org/bartonellosis, https://www.cdc.gov/bartonella/about/index.html. The photo is from a 2018 slide presentation in Halifax by researchers at Dalhousie.

Day 28 – Babesiosis is a nationally notifiable disease in Canada. Learn about symptoms & treatment – https://www.canada.ca/en/public-health/services/diseases/babesiosis/health-professionals/national-case-definition.html; https://globalnews.ca/news/9601467/ticks-babesiosis-disease-canada/; & https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9155882/.

Day 29 – Bell’s Palsy/facial palsy can be a sign of Lyme disease – https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5729143/; https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8791801/.

Day 30 – Lyme Arthritis can be misdiagnosed as Juvenile Arthritis & other types of arthritis. This is from almost 10 years ago – https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4614091/. Why is knowledge still lacking – https://www.cdc.gov/lyme/hcp/clinical-care/lyme-arthritis.html.

Day 31 – This is the last day of May, but tick awareness/prevention needs to continue. It should be year-round. Don’t be complacent. As other tick-borne illnesses continue to grow, diagnosis & treatment may become even more problematic.

Lots of info in the above. Any help with sharing the word would be very much appreciated. Who knows who you might help. Even one person is worth it.

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.