Tag: health

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.

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.