Category: Uncategorized

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.

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.

Lyme on Television

It has been somewhat of an exciting time lately with Lyme being mentioned on “Coronation Street”, “The Bachelor”, and even “Jeopardy”.

I don’t watch any of the above usually but have started watching “The Bachelor” because one of the contestants, Daisy Kent, is very open about her past struggles with Lyme and she also speaks about her treatment, and answers questions, via TikTok, etc. It’s always great when someone speaks up, but it’s amazing when they actually go into detail about their treatment, and where it was received. In Daisy’s case her main treatment was at Klinik St. Georg in Germany.

The “Coronation Street” storyline was developed with the help of Lyme Disease UK – https://lymediseaseuk.com/2024/01/09/coronation-streets-joseph-brown-diagnosed-with-lyme-disease/. It is wonderful when TV shows, movies, etc., include information on Lyme and Tick-Borne diseases, especially when they ensure that the information is accurate.

A recent episode of “Jeopardy” had as a question – “The Quiet Epidemic” makes the case for the existence of the chronic kind of this disease named for a New England Town. The answer is, of course, “What is Lyme disease?” That quick segment provided watchers with a name of a movie that they could watch, as well as highlight Lyme itself.

These may not seem like much, but they are all reaching different audiences and providing education and awareness. I will take it.

There have been many more mentions of ticks, Lyme and Tick-Borne diseases on a number of shows in the past. “House” had an episode with a patient presenting with Tick Paralysis and he found and extricated the tick from a very private location which, by the way, is one of the warm, moist, areas that ticks love. Shows, such as “Friends”, “Brooklyn NIne-Nine”, “New Amsterdam”, and so many more, also raised the topic. Some mentions are not great. It’s not always an overly helpful addition but, again, it does raise the topic, even if not done accurately, or done in a humorous manner.

Where I’m going with this is that anytime you have the opportunity to mention ticks and Tick-Borne diseases, please do so. As well, share what you can, where you can. The more people that have even a basic knowledge, the better. Hopefully, as awareness is raised, less people will end up with Early or Late disseminated Lyme. Cases will be reduced, and those that do end up with a bite will be treated faster and accurately. Here’s hoping anyway.

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.

What Is It Going To Take For Meaningful Change?

When you think about the tainted blood scandal in Canada the name Janet Conners quickly springs to mind (https://www.cbc.ca/news/canada/nova-scotia/aids-advocate-janet-conners-remembered-as-a-voice-impossible-to-ignore-1.6558941). When you think about HIV/AIDS activism in the US, you think about the AIDS Coalition to Unleash Power (ACT UP) (https://www.npr.org/2021/06/16/1007361916/act-up-a-history-of-aids-hiv-activism).

There are many similarities between the tainted blood scandal activism, the AIDS activism, and Lyme & Tick-Borne disease activism. You just have to read “How AIDS Activists Fought for Patients’ Rights” – https://www.history.com/news/act-up-aids-patient-rights to see some similarities. However, there are many differences as well. Unfortunately, although there are many Lyme Non-Profits; Lyme Support Groups; researchers; and more, there isn’t a cohesive group, or a person, that is known worldwide working on getting the masses together for protests and large scale events. Don’t get me wrong, there are many, many, people doing what they can but, for the most part, they are working either by themselves or with a small group. Larger organizations are doing amazing things undertaking research, holding conferences, etc., but we still have so much to do to get to a point where everyone is taking Tick-Borne diseases (TBDs) seriously and that those dealing with the effects of a tick bite receive the diagnosis and treatment that they require.

Frequently, when events are organized to raise awareness around the world, including in Nova Scotia, usually only small groups of people attend, if any at all. Organizers, such as myself, hear a number of reasons for the lack of attendance. Things like the time of day; the distance to travel; and that they are too sick to travel, are common to hear. However, I think the main reason, for many anyway, is that they are worried that if they speak up, or are seen out in public at a protest or gathering, any mainstream medical treatment that they might be receiving will be stopped and/or any future treatment required will not be provided as they are seen as causing trouble. These are all valid reasons.

To bypass these reasons we need more people involved that are not dealing with TBDs themselves. Those with family, friends, etc., dealing with TBDs, or even those that don’t know anyone presently dealing with TBDs, but are concerned about the ever increasing risk. The more “healthy” people involved, the better. The more people involved that are in health care and research would be amazing. How do we gather the troops?

When the powers that be actually start looking at the costs associated with no diagnosis, misdiagnosis, or under treatment, of TBDs, they will realize that the savings would be significant if ALL health care practitioners were adequately trained in ALL TBDs. Even better would be a clinic dedicated to TBDs such as the one we asked the provincial government for in 2022. In Nova Scotia, we have a high rate of a number of things that could be as a direct result of being the province with the highest rate of Lyme in the country, such as knee and hip replacements. We also have a very high rate of MS which can have similar symptoms as Late Disseminated Lyme. Not that long ago, when you were diagnosed with MS, it was just MS. Now there are different syndromes or disease courses – clinically isolated syndrome, relapsing-remitting MS, primary progressive MS and secondary progressive MS (https://www.nationalmssociety.org/What-is-MS/Types-of-MS). It is also interesting to note that Lyme is supposed to be one of the things to rule out prior to an MS diagnosis, yet there is no definitive, 100% accurate, test for Lyme. Nova Scotia also has fairly high rates of dementia, mental health issues, Fibromyalgia, Chronic Fatigue Syndrome, ALS, and more. Why? Could the bacteria and viruses being transmitted by ticks be causing many of our issues?

The Nova Scotia government announced in December a new clinic implementing innovative approaches for diagnosing and monitoring inflammatory Bowel Disease. The announcement mentioned that “Inflammatory Bowel Disease (IBD) is a growing concern in Nova Scotia, with one in every 80 people, or 1.25 per cent of the population, affected by the chronic conditions of Crohn’s disease or ulcerative colitis. It is interesting to note that cases of Inflammatory Bowel Disease might actually be significantly reduced in Nova Scotia if TBDs were diagnosed and effectively treated on a more timely basis – “Borrelia Burgdorferi, a Root Cause of Inflammatory Bowel Disease: A Case Report of Successful Treatment and Remission” – https://pubmed.ncbi.nlm.nih.gov/37392196/.

I have mentioned this in the past but I was told many years ago by the head of the College of Physicians and Surgeons that it generally takes 20 years for research to filter down to the actual health care providers. The research and information that has been undertaken over the last twenty years on TBDs is amazing but only those directly affected by the issue seem to be aware of all the new advancements. Trying to get this information to the necessary people is problematic. Trying to get this information to people, and have them read it, is pretty much impossible. Our Chief Public Health Officer has told me on a few occasions that health care professionals are receiving information on TBDs, yet he always prefaces that comment with the fact that he cannot force them to read it. If very busy health care professionals do not believe an issue to be that important, they will not take their valuable time to learn more. Whose responsibility is it to ensure that they realize that the topic is VERY important and that more education is required. For the most part, most health care professionals that have taken it upon themselves to learn more have a personal reason for doing so. They had a family member, friend, or even themselves, struggle to get a diagnosis and treatment due to the lack of knowledge and information.

I have been attempting to form a new Non-Profit Association in Nova Scotia to help address some of the following:

  • Development of a comprehensive website, with information on all stages of Lyme and tick-borne diseases. 
  • Providing accurate, up-to-date, information to health care professionals through podcasts, interviews, Zoom presentations, etc. 
  • Organizing 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?
  • Get the 3 Asks of the provincial government implemented. 
  • 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. 

Unfortunately, I am having considerable trouble finding people with the health, time, and energy to be involved in something like this. I do believe something more formal than my NS Lyme Support Group or the NS Lyme Advocacy Group is required. Certainly a website would be very helpful so that all information is easy to locate, but that requires funds which an Association could help obtain. If interested in being involved, please reach out to me so that we can discuss further.

As I was writing this post I received an email with a link to the following research paper – https://www.mdpi.com/2647394, entitled ““Small Wins” for those with Lyme Disease in Canada: Patients in an Embodied Health Movement” which actually details a lot of what I am talking about. There have been “small wins” but there hasn’t been enough significant movement to help those with a later stage of Lyme and TBDs. There is also a large number of people that are unaware that ticks carrying diseases can cause debilitating, and even deadly, issues if not diagnosed and treated early. Many still believe the old adage that they are rare, hard to get, and easy to treat. Many also believe that they just cause a rash and flu-like symptoms. The reality is so different.

Please educate yourself and help educate others.

Let’s Start 2024 With Some Tips & Food For Thought

I, for one, am very glad that 2023 is over. What a year!

Although I’m not big on New Year’s resolutions, I am going to try to make sure that 2024 is much better – in whatever way I can. My first attempt at this will be writing this post about a whole lot of things that I read about, or watched, during the last year that might strike a cord in you health wise.

Our diet has significantly impacted our health and there are many issues that people experience, especially woman, that are overlooked or undiagnosed. I’m going to touch on a few here. I will remind folks that I am not a doctor and the things I talk about are my own personal thoughts and opinions. I’m not recommending anything. I’m just throwing out information for you to investigate further, if interested.

The only magazine I usually read on a regular basis is “First for Women”. Lots of good articles about health, food, etc. Many of the articles list symptoms, potential causes, and recommended diet switches or additions. As many of those dealing with tick-borne diseases know, there are a lot of illnesses out there with very similar symptoms and there are some that suggest that some newer illnesses, like Fibromyalgia and CFS/ME, are actually as a result of tick-borne diseases. Although I’m not diving deeper into that right now, I am open to this possibility and, certainly, looking at symptom lists of a variety of illnesses, including Long COVID, many overlap.

One of the issues that I have had for many years is continual weight gain. Although I eat reasonably well and try to get a reasonable amount of exercise, my weight has continued to increase over the last few years. I recently read about nutritional yeast and how it can help with weight loss and also help if you have a sluggish thyroid. I started adding it to smoothies about a month ago and have since lost about five pounds. This may not seem like a lot to some, but when the scale has only gone up for a long time it is amazing to finally see it going down. I will also be interested to see the results of my next blood test for my thyroid. Over the last year I have gone from Hypo to Hyper and back to Hypo, with my medication changing several times. I will provide an update when I have my next blood work.

The other recent addition to my regular routine is psyllium husk powder. I just started adding that about a week or so ago after reading about it in the January 8th edition of “First for Women”. The article notes that psyllium husk provides soluble fibre. I added this to my diet because recent blood work showed an increase in my LDL cholesterol and apparently psyllium husk can help lower LDL – https://www.health.harvard.edu/heart-health/psyllium-fiber-regularity-and-healthier-lipid-levels. My doctor gave me the option to try to reduce my cholesterol before putting me on drugs. The article suggests that you seek out safe sources as there have been concerns that some psyllium supplements contact a dangerous amount of lead. Do your research!

A possible cause of a number of symptoms such as brain fog; memory lapses; blue moods; anxiety; nausea; bloat; and difficulty swallowing is apparently a tired vagus nerve. Might be something for some of you to check out. Two easy recommendations noted in “First For Women” is deep breathing and humming/singing. Very easy to try these two things that can also help with other things, like stress.

If you are fortunate enough to have a doctor, see about getting blood work for things like Vitamin D, Vitamin B-12, etc. There are a number of things that we can be deficient on and sometimes we may be taking things but they are not working the way they should because they are not being absorbed/utilized properly. I have taken a D3 supplement for many years and have added B-12 not that long ago. I have tried a number of things over the years but you have to be careful. There is such a thing as too much of a good thing, at least for some things.

In a perfect world, we would all be working with a nutritionist/dietitian adequately trained in all the different foods that can help improve our overall health. However, most of us are not, partly due to cost, but mostly due to the fact that very few people are adequately trained in this regard. This is another area that is frequently discussed in the “First for Women” magazine. For instance, there was recently an interesting article on polyphenols and how a daily varied assortment can improve your overall health. There are many articles on this topic. This is just one – https://draxe.com/nutrition/polyphenols/.

If you want some inspiration, and have access to Netflix, there are a couple of shows that I have recently watched that I found to be very informative. One is “Live to 100: Secrets of the Blue Zones”. I enjoyed this so much that I’m now following the host, Dan Buettner. Have a pen and paper next to you to jot down notes about some of the suggestions that you think you can easily incorporate. The other show was “You Are What You Eat: A Twin Experiment”. Although this includes a lot of information on why you should be vegetarian/vegan, it also includes a lot of usable info to improve your health. I have definitely decided to eat less meat and fish, partly because of this documentary; however, it is something I have been thinking about for quite some time.

There are so many little tweaks that we can do on a daily basis that are low cost and easy to do. They may not cure all that ails us, but it just might get you to a point of living a somewhat happier, healthier, life, especially as you then have some control on what is going on in your body.

As always, do your research and make sure that anything that you are adding, or subtracting, doesn’t cause any new issues. We are all different and there is very little, if anything, that affects us all the same way. Only you know your body and how it is feeling. Don’t let anyone suggest that they know what is best, including doctors.

End of Year Review(ish)

The year is coming to a close so I thought it would be a good time to provide an update and some information that has been brought forward during recent Lyme Support Group meetings. However, before I get into that, I want to wish everyone Happy Holidays. I hope you all get an opportunity to enjoy whatever you celebrate.

Christmas has always been one of my favorite times but this year it has been more of a struggle to get things done. I’m fortunate, however, to have my two adult children home for the holidays. I hope you all get a chance to spend some time with loved ones.

Although I had hoped that more would be done this year to increase awareness and education of Lyme and tick-borne diseases (TBDs), it hasn’t been a stellar year in that regard. TBDs still don’t seem to receive the concern that they should and many are still very uneducated about how to prevent, diagnose, and treat. If you are able to help in this regard, whether it’s posting on social media; talking to your neighbours; educating your health care professionals; or anything that you can; it all helps.

Unfortunately, many more people have become infected with tick-borne diseases this year. Many also have no idea that they have been infected and others have not received an appropriate treatment. These people are all dealing with health issues that many health care providers will blame on aging, stress, mental health, diet, etc.

As symptoms of TBDs can vary from person to person, and day to day, it is VERY difficult to get a quick diagnosis and appropriate treatment. It has also become much more common to acquire more than one TBD from a bite. For the most part, health care providers know very little about all of the various things that ticks can transmit. There are a few links that I like to make sure that people are aware of:

  • For Early localized (or Acute) Lyme, this federally funded document is my go to – https://cep.health/clinical-products/early-lyme-disease/.
  • For those dealing with a large assortment of symptoms, that change from day to day, or hour by hour, this document is very helpful in trying to determine if you might be dealing with TBD’s – https://restorativehealthclinic.com/wp-content/uploads/2017/11/Horowitz_LymeDiseaseQuestionnairev.pdf.
  • If your health care provider only allows short appointments, yet you have multiple health complaints, this document may be helpful for them (and you). It allows for a quicker clinical review – https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6908481/.
  • To learn more about the symptoms of all the possible TBDs that can be transmitted you may have to look at a number of places but the CDC does have some information. In Nova Scotia, Lyme, Babesiosis, Powassan virus, Anaplasmosis, and Tularemia are all reportable diseases – https://novascotia.ca/dhw/cdpc/documents/06026_itsthelawposter_en.pdf. Also found in ticks in Nova Scotia are Bartonella (Can it be transmitted?); Borrelia miyamotoi (can cause a Lyme-like illness); and Rickettsia. It has also been suggested that Alpha-gal Syndrome (https://www.cdc.gov/ticks/alpha-gal/index.html) has found its way here. There may be others.
  • If you remove a tick from a person or pet, I always suggest that you get the tick tested. Although that is not a diagnostic tool, it may help you move forward with appropriate treatment if symptoms do start. As ticks can carry more than, or just, Lyme, I always suggest testing for common TBDs via Geneticks, which I believe is the only place in Canada providing testing for ticks at this present time – https://geneticks.ca/submit-a-tick-for-testing/. Although there is a fee, knowledge of potentially transmitted diseases, or piece of mind, can be worth the price. Dealing with late stage Lyme and/or other TBDs can be very costly.

I run a NS Lyme Support Group that meets the 2nd Tuesday of every month at 12:00 noon, via Zoom. Meetings generally run for 1-2 hours, depending upon the number of people in attendance and the number of topics discussed. Attendees can arrive, and leave, when they want. I have an email list that I send a reminder out to every month and people then let me know if they want the Zoom link. I also post a notice in three of my Facebook pages/groups. The group is my closed “Lyme Support Group – Atlantic Provinces” which is helpful for those that can’t attend Support Group meetings. As it is a closed group you need to get approved by me to join. Usually quick and easy. However, if you have requested to join, and you haven’t heard from me in a reasonable period of time, check you “hidden” Facebook messages from non-friends.

We discuss anything and everything during these meetings. The last few have resulted in some interesting topics:

  • Pepto Bismal (Bismuth) – this is an interesting potential Lyme treatment that has recently been raised by someone that has tried it, with some success. Not a lot of information on it and if done incorrectly it can be harmful to your health (has caused death in at least one case). It can apparently also cause kidney issues. You have to do your own research and make an informed decision. Pepto Bismal has been around for a very long time and many people, including my Mother, used it for an assortment of stomach issues, etc. There are now groups on social media full of people that are trying it to see if it helps with their symptoms.
  • As most know, deer are a preferred feeding and breeding ground for ticks. However, deer apparently do not get, or transmit, Lyme. Why? This question was asked, and answered – https://www.umass.edu/news/article/white-tailed-deer-blood-kills-bacteria-causes-lyme-disease. This finding could eventually result in treatments for humans and suggests that deer can actually be valuable to have around.
  • Many of our discussions are regarding the things people are doing to help improve their immune system so it can prevent or fight health issues. There is a Netflix show about Blue Zones around the world that investigated how and why residents were living to old age more healthy and happy than people in other areas. Lots of good advice on food, exercise, companionship, etc. If you don’t have Netflix, there are a variety of articles, books, etc., on the topic. Airdrie, in Alberta, was going to be the first “Blue Zone” community in Canada but, unfortunately, COVID struck and things changed. This is a good article about Blue Zone communities – https://seniorsbulletin.ca/blue-zone-communities/. We can all put some, or all, of the suggestions to use.

As you can see, we talk about anything and everything, and because of that we sometimes get off track, but that is occasionally when interesting tidbits of information are discussed. It is a time for those dealing with a health issue that is relatively unknown and misunderstood to talk to others that get it. Used frequently is the statement “You don’t get it until you get it.” All of us have friends and family that don’t understand so the support is very important. Anyone dealing with TBDs, either themselves, or as a support person for someone that does, are welcome to attend. We also do not exclude anyone from other provinces. It is hoped that an in person Support Group meeting will start up again in 2024 for those in the Bedford area; however, the monthly Zoom meeting will continue as there are people from all over the province, and elsewhere, that attend.

As always, feel free to reach out to me with questions, comments, concerns, AND any suggestions for a blog topic. I could use the help!

Happy Holidays!

It Has Been Awhile – Update Required

As with many people during these trying times – COVID, drought, fires, floods, storms, etc. – my mental health has taken a beating. I haven’t been able to get out of my own way for several months now. However, it’s time to give some updates on what’s happening in the Lyme world (or at least Nova Scotia).

First of all, NS Public Health has been using the hashtag “BeTickAware” on social media posts about ticks and tick-borne diseases since mid-May, or thereabouts. Unfortunately, there are not a lot of posts, but please do what you can to help get the word out by sharing. NS Health has also paid for short, five second “ads” on games, etc. Prevention is key, yet many still do not undertake preventative measures due to lack of knowledge, or concern.

Another positive is that tick awareness signage has finally been developed and installation has started in provincial parks in the province. If you see one, please snap a photo and share on social media as every little bit of awareness helps. If you are in a provincial park, and do not see signage, please put a request in to the park management.

Although I’m not yet sure if there is much value in this new Tick Service by NS Health – https://www.nshealth.ca/service-details/Nova%20Scotia%20Health%20Tick%20Service – at least some attempt is being made. Please let me know if you use the service and how it goes. Unfortunately, a quick dive into the site wasn’t that helpful. We absolutely need a dedicated Lyme clinic, especially for those dealing with Early or Late Disseminated Lyme and/or other Tick-Borne Diseases.

Early this year NS Health added Anaplasmosis, Babesiosis and Powassan virus to the list of reportable diseases. I have been hearing about an increase in the number of Anaplasmosis cases that are being diagnosed, but I haven’t heard anything about Babesiosis or Powassan virus. Hopefully, the addition of these three potential co-infections to the list of reportable diseases will finally get doctors to take a closer look at their patients when symptoms don’t line up with the symptoms of Lyme disease.

Attempt is being made to have a “Nova Scotia Lyme & Tick-Borne Diseases Association”. Unfortunately, however, we are having difficulty in finding people interested in sitting on a Board. Please reach out to me if you are interested and would like more information.

Although still in the early stages of development, the following are some things we would like to see an Association work on and towards:

  • Development of a comprehensive website, with information on all stages of Lyme and tick-borne diseases. 
  • Providing accurate, up-to-date, information to health care professionals through podcasts, interviews, Zoom presentations, etc. 
  • Organizing awareness/prevention events throughout the province, including those for Lyme Disease Awareness Month.
  • Continuing to work towards the three ASKS of the provincial government, made by the NS Lyme Advocacy Group. These ASKS were:
    • – Lyme Clinic – There is an urgent need for a clinic in Nova Scotia dedicated to complex Lyme and Tick-borne diseases, similar to the Tick Collaborative Care Service in Manitoba.
      – Education – Health care providers need accurate, up-to-date, education on TBDs so that they can recognize and treat all stages of Lyme and other TBDs.
      – Non-Partisan Lyme Disease Task Force – including representation by all political parties, as well as those with lived experience.
  • 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?
  • Development of a tick testing program in Nova Scotia, for all tick-borne diseases, not just Lyme. That may just be an expansion of Geneticks into the province, but it would be great to provide a free tick testing service.
  • More local research. 

Our hope at the moment is to have our first meeting early in 2024, via Zoom, with all those that are interested in being involved. Some will be those interested in being on the Board and others would be those interested in helping with initiatives. The NS Lyme Advocacy Group presently meets once a month on a Thursday evening, usually in the 2nd or 3rd week, but we are open to changing days/times, if required. Would love to hear from you!

I’m sure that I am missing things so you may hear from me sooner than usual. In the meantime, stay safe! Ticks are still active and COVID numbers are increasing once again.

Lyme Disease Awareness Month 2023

We are back to some in-person events! Lots of things being organized for Lyme Disease Awareness Month in Nova Scotia. Some are still in the organizing stage and have to be firmed up but I will put a “TBD” (locations/dates to be determined) on any that are yet to be finalized and I will update this post as they are.

May 1st & 2nd – Halifax City Hall to be lit “Lyme” green

May 2nd – Flag-raising at Halifax City Hall – 8:30 am

May 15th – Flag-raising at Province House – 9:00 am (revised)

May 15th-19th – Province House lit “Lyme” green

First week of May – MODL’s Municipal Services Building at 10 Allée Champlain Dr, Cookville, to be “Lyme” green

May 1st – 11th – Victoria Park, Amherst, to be “Lyme” green

May 1st – 31st – Truro Civic Square Library to be “Lyme” green, with possible exceptions

May 23rd – Hike Nova Scotia, Tick Prevention Webinar, 7pm – https://www.hikenovascotia.ca/courses-tick-prevention/

May 29th – 6-8:00pm – A discussion with Dr. Richard Dubocq and others, Lunenburg Legion, 34 Duke Street, Lunenburg. Dr. Dubocq is a retired Lyme doctor from Maine who treated many in the Atlantic Provinces. The founder of Atlantick will also speak, as will Dr. Claudia Schmiemann of the Holistic Health Centre/Keliza Holistic Living.

Postponed – New Date Yet to be Determined – 1st Annual Walk/Fly a Kite for Lyme Disease Awareness – This year we will be remembering and honouring Hailey Kane who died tragically from Lyme complications in 2018 at 17 years of age. Volunteers needed – Brian Milligan – 902-848-6286.

June 17th – Registration required – Woodlawn Public Library – “Ticked Off! Protect Yourself From Lyme Disease” – a screening of “Faces of Lyme” and Q&A. – https://halifax.bibliocommons.com/events/6441818a11597f2505a403a7.

Public screenings of “The Quiet Epidemic” (trailer – https://youtu.be/cwIi7Y37Nnk)

The province has proclaimed May as Lyme Disease Awareness Month. As well, all NS municipal units were contacted requesting they proclaim May as Lyme Disease Awareness Month and light facilities green for all, or a portion, of the month. Many municipal units do not undertake proclamations but a few of those will be posting about tick prevention on their social media.

The following municipal units have agreed to proclaim:

Halifax Regional Municipality

Cape Breton Regional Municipality

Municipality of the County of Annapolis

Municipality of the County of Colchester

Municipality of the County of Kings

Municipality of the County of Pictou

Municipality of the District of Chester

Municipality of the District of Guysborough

Municipality of the District of Lunenburg

Municipality of the District of Shelburne

Town of Amherst

Town of Antigonish

Town of Bridgewater

Town of Lunenburg

Town of Middleton

Town of New Glasgow

Town of Pictou

Town of Port Hawkesbury

Town of Shelburne

Town of Stellarton

Town of Trenton

Town of Westville

We ask that everyone decorate their homes in lime green for the month of May to help raise awareness. Would love to see how you go lime green for Lyme. Share photos on social media with the hashtag “LymeDiseaseAwarenessMonth” and/or “Stopthebite”.

If those on social media want to post about Lyme Disease Awareness Month on their personal pages as well as on any of their local community pages that allow posts, it’s a good time to remind people of the proper way to remove ticks (the federal government video is helpful – https://www.canada.ca/en/public-health/services/video/lyme-disease-properly-remove-tick.html). Also mentioning the variety of erythema migrans Lyme rashes (https://www.cdc.gov/lyme/resources/NCEZID_rash_poster3r1-508.pdf) is important as the bull’s-eye version is only seen in a small minority of cases AND not everyone gets a rash. The fact that both blacklegged and dog ticks can carry a variety of illnesses is also frequently overlooked. Also not mentioned enough is the fact that present testing is not 100% accurate so a negative test does not necessarily mean that you do not have Lyme and/or other tick-borne disease.

Although dog ticks have not yet been found to carry Lyme, as far as I know anyway, they can carry other things that can be transmitted to humans. No attached tick is a good tick!

The eTick tool (https://www.etick.ca/) is helpful for tick identification and determining approximately how long the tick may have been attached to a host.

Geneticks (https://www.geneticks.ca/) is a private tick testing company in Canada, with labs in Ontario and New Brunswick. Although there is a fee, it can be worth it to have an engorged tick tested if removed from a human or pet. It’s not a diagnostic tool, but can be a life-saver if symptoms arise. As well, if you can afford it, I highly recommend the common panel rather than just Lyme as ticks can be carrying more than Lyme or things instead of and it’s almost impossible to have those diagnosed by health care practitioners in Nova Scotia.

Here are some additional links for sharing/information:

Please do what you can to help raise awareness.

Thank you.