Tag: tickborne

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

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

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

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

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

We feel that this petition is important because:

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

The following is the wording:

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

WE ASK THAT THE GOVERNMENT:

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

– Adequate Education for all health care providers and residents.

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

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

2. UNDERTAKE a YEAR ROUND awareness campaign, such that ALL Nova Scotians, and visitors to the province, are informed about ticks, what diseases/infections they can carry, how to prevent being bitten, how to properly remove, how to landscape to prevent, how to get diagnosed/treated, that a negative ELISA does not mean that you do not have Lyme disease or another tick-borne disease, etc.

3. INCLUDE in the “Guidance for Primary Care and Emergency Medicine Providers in the Management of Lyme Disease, Human Granulocytic Anaplasmosis, Babesiosis and Powassan virus infection in Nova Scotia”, the following disclaimer contained in the Infectious Diseases Society of America (IDSA) Lyme Guidelines, which the NS Infectious Diseases Expert Group recommends for treatment: “It is important to realize that guidelines cannot always account for individual variation among patients. They are assessments of current scientific and clinical information provided as an educational service; are not continually updated and may not reflect the most recent evidence (new evidence may emerge between the time information is developed and when it is published or read); should not be considered inclusive of all proper treatments methods of care, or as a statement of the standard of care; do not mandate any particular course of medical care; and are not intended to supplant physician judgment with respect to particular patients or special clinical situations. Whether and the extent to which to follow guidelines is voluntary, with the ultimate determination regarding their application to be made by the physician in the light of each patient’s individual circumstances.”

Although electronic petitions are not allowed, we have prepared a Change.org petition to go along with, and promote, the paper one. The ability to comment as to why you are signing is huge. Please consider adding your reason. We hope that many people will sign both the paper copy, and sign and comment on the Change.org petition. It can be found here – https://chng.it/v2q2JvcgPY.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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