Tag: Ticks

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.

Where Is The Concern About Ticks in Nova Scotia?

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

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

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

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

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

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

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

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

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

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

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

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