Tag: Anaplasmosis

Should A Cost Analysis Be Undertaken Re Lyme – YES!

A little background first.

The Federal Framework on Lyme Disease Act was Assented to on December 16, 2014 – https://laws-lois.justice.gc.ca/eng/acts/F-7.35/FullText.html

In 2016, a conference was held in Ottawa to discuss Lyme and develop a federal framework on Lyme disease – https://www.canada.ca/en/public-health/news/2016/05/minister-philpott-launches-conference-to-develop-federal-framework-on-lyme-disease.html. It was an opportunity for doctors, patients, researchers, and caregivers to be at the same table to discuss issues regarding Lyme and tick-borne diseases in Canada. Within one year of the conference, a Federal Framework on Lyme Disease was to be completed.

The Federal Framework on Lyme Disease was made public in May of 2017 – https://www.canada.ca/content/dam/phac-aspc/documents/services/publications/diseases-conditions/lyme-disease-canada-federal-framework/lyme-disease-canada-federal-framework-eng.pdf.

In May of 2022 a five year report on the effectiveness of the Federal Framework on Lyme disease was provided – https://www.canada.ca/en/public-health/services/publications/diseases-conditions/federal-framework-lyme-disease-report-parliament-may-2022.html

Although undertaking a cost analysis was included in the Federal Framework on Lyme Disease, as far as I know only Manitoba has undertaken one and, based upon the results, opened the Tick Collaborative Care Service TiCCS – https://healthproviders.sharedhealthmb.ca/services/ticcs/.

The cost for undiagnosed, misdiagnosed, under-treated, etc., Lyme and tick-borne diseases is significant. How significant is unknown.

When I speak to most people who have been dealing with tick-borne diseases, you hear about all the specialists that they gone to; the myriad number of tests that they have had; the number of surgeries that they have had due to damage that has occurred because of the bacteria and other things that the ticks have transmitted; the number of work or school days that they have missed; and so much more. You hopefully get the drift.

It’s not a stretch to suggest that the cost associated with having a comprehensive and dedicated Lyme & Tick-Borne Diseases Care Clinic developed in Nova Scotia (and every province), that included well-trained health care professionals in all aspects of Lyme & tick-borne diseases, would save the province, and country, a significant amount of money.

How can we make this happen?

As a reminder, a petition was tabled by the Nova Scotia government last year that included the following ASKS:

  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.”

If our ASKS had been completed, the province would have significantly reduced ongoing costs associated with the increasing number of ticks, tick-borne diseases, the number of annual cases, and improved the overall health of those presently suffering.

What has been done in NS since the first presentation in 2022 (which was given to all three main parties) is minimal and in some cases has gone backward – Some signage has been installed at the entrance of provincial parks, the province came up with the hash tag “BeTickAware”, they stopped updating and printing Lyme disease pamphlets, they placed ads on games for one season, and I’m having a hard time thinking of what else has occurred, that we know about that is, as who knows what might be happening behind closed doors. Maybe they are investigating how to improve the situation. We don’t know!

Undertaking a cost analysis will finally make everyone understand the actual impact that ticks are having in this province. It should have been the first thing undertaken in Canada in 2017 when the Federal Framework on Lyme Disease was completed. However, it wasn’t. Now it’s up to Nova Scotia to do the same as Manitoba.

If you want to help get this moving, please contact your local MLA and consider also reaching out to your MP and Municipal Councillor. All three levels of government have a part to play.

A New Year, A New Start

It’s hard to think about Lyme and tick-borne diseases (TBD’s), at least for me, due to everything that is happening in the world, especially to the south of us. Social media has many wonderful uses, but because of it, we all know everything that is happening, as it happens. It is not good for anyone’s mental health but especially anyone dealing with an illness. Stress can impact you in many ways. If nothing else, please do not read social media in bed. Certainly not before you go to sleep. Read a book, do a crossword, meditate, whatever works to help you get your mind off world events.

I always look forward to a new year as I always hope that this will be the year of change when it comes to Lyme and TBD’s. Every year I think that this has to be the year that we will see significant improvements made. We will have better educated health care practitioners. We will have better year-round awareness. We will see new and improved testing that can accurately tell you, at all stages, that you have Lyme so that treatment can start as quickly as possible. We will finally have the realization that one set of treatment guidelines does not work for everyone and that Lyme and tick-borne diseases need to be diagnosed and treated based on the patient, not on a standard one size fits all treatment. It doesn’t.

I had a bit of hope for this year but recent segments by CBC really angered most of us dealing with, or advocating for, Lyme and TBD’s – https://www.cbc.ca/player/play/video/9.7048962, https://www.cbc.ca/news/investigates/celebrity-chronic-lyme-industry-9.7056234, and https://www.cbc.ca/player/play/video/9.7068925. Although CBC has generally been quite good in getting accurate, up-to-date, information out to the public, as least in Nova Scotia, these three pieces have really done quite a bit of harm and made me think of articles that came out ten years ago, or more.

It is interesting to note that sometimes information like this gets publicized prior to a Lyme conference or event that might raise questions regarding how Lyme and tick-borne diseases are being dealt with in this country. It has happened before in 2019 when, just prior to the Bridgewater Lyme Conference, a doctor was brought in from the US to discuss Lyme with doctors at the IWK Hospital. He minimized Lyme by saying “it’s only Lyme” and actually joking about it.

The first week of February there was a conference in Gatineau, Quebec to discuss Lyme and tick-borne diseases. On February 2nd, the day before the actual conference commences, there was a one hour (yes, only an hour) panel discussion entitled – “Navigating Complications of Lyme disease: Translating Research, Practice, and Experience to Improve Patient Care”. Unfortunately, the event was in-person only, limiting the number of people that could benefit from this type of discussion. The panelists were Dr. John Aucott of Johns Hopkins University, Dr. Adrian Baranchuk of Queen’s University, Dr. Brian Fallon of Columbia University, and Dr. Ralph Hawkins of the University of Calgary. I would have loved to hear them speak as they are all very knowledgeable regarding the topic. The 2016 Lyme Conference in Ottawa allowed for people to watch and participate from their homes, ensuring that people that were unable to travel could benefit from the information shared.

On January 21st, Global News published the following article – https://globalnews.ca/news/11623135/lyme-disease-patients-care-gaps-canada/ which mentioned the panel discussion, but didn’t provide any information on how to attend. Very limited information seemed to be available other than on Facebook and perhaps other social media sites. It was not mentioned on the Agenda for the two day TickNet Conference that was taking place on February 3rd and 4th. It seems to be a stand alone event before the main event.

But back to the CBC segments. They questioned whether stars that have said that they have been diagnosed with Lyme truly have it. They questioned “Chronic Lyme”, which is more commonly know as Late Stage Lyme or Post Treatment Lyme Disease Syndrome. They mentioned the bull’s eye version of the erythema migrans (EM) rash, rather than the fact that other types of EM rashes are more common and that many people do not get, or see, a rash. They mentioned that most people can be treated with a short course of antibiotics but didn’t mention that many do not get diagnosed at the Early Localized (Acute) stage of Lyme and that as the Lyme bacteria progresses throughout the body to the Early Disseminated and Late Disseminated stages, symptoms can worsen and cause cardiac, neurologic and arthritic symptoms. They didn’t mention that ticks can carry other tick-borne diseases, such as Anaplasmosis, Babesiosis, and more, along with, or instead of Lyme, which can make a prompt, accurate, diagnosis much more difficult.

Dr. Michal Tal at the Tal Research Group at MIT is undertaking research on Long COVID and Late Lyme – https://talresearchgroup.mit.edu. They are looking at the similarities in the two and trying to determine why some people continue to have symptoms even after treatment. It’s worth reading about.

There are others that are looking at the same issue, such as Johns Hopkins – https://www.hopkinslyme.org/lyme-disease/treatment-and-prognosis-of-lyme-disease/ and Columbia University – https://news.columbia.edu/news/when-lyme-disease-doesnt-go-away, and many more. I selected these two specifically because doctors from both are part of the panel discussion in Quebec.

Lyme and tick-borne diseases can become debilitating, for a number of reasons, not least of which is that doctors are still not adequately educated on the topic. In Nova Scotia, for instance, I know of people in their third and fourth years of medical school that have advised that very little is mentioned, even though Nova Scotia has the highest rate of Lyme in Canada and one of the highest in North America.

Many doctors still think a negative ELISA blood test means you don’t have Lyme. They are unaware that there are several possible reasons why a test may be negative. Many doctors also still believe that the bull’s-eye version of the EM rash is the only type and will misdiagnose other types as Cellulitis, Ring-worm, and who knows what else. Many doctors are not aware that other tick-borne diseases, like Anaplasmosis, can alter the types of symptoms that can be seen and that children may have different symptoms.

There is so much we still need to learn but there is also a considerable amount of information available from places like Columbia University, MIT, Johns Hopkins, Mount Allison University, Acadia University, etc. Lots of research is being undertaken. Educate yourselves, preferably before you, or someone you love, is affected.

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

In November of 2024 the Nova Scotia Lyme & Tick-Borne Diseases Association was officially registered. At that time we had a six member board. Due to a variety of issues, such as moving out of the province and workloads, we have had three resignations. However, we have been fortunate to have three new people joining us. Having gone through this we now realize that we need a larger board so that we can maintain a quorum when some members are unable to attend. Therefore, we need YOU!

We have been meeting for an hour the first Thursday of the month at 7pm, via Zoom; however, we are in the process of trying to ascertain if this date/time is still working for everyone. Due to vacations and a limited Agenda we took July and August off.

Along with Board members, we also have a number of Lyme advocates that attend our meetings to keep them in the loop as they help with initiatives. We could also use more advocates.

We have no specific requirements to become a Board member other than you have to reside in Nova Scotia. We would love to include people from a number of stakeholder areas such as pharmacists, naturopaths, doctors, nurses, veterinarians (or people that work in that field), those that work in fields that are considered greater risk (Search & Rescue, NSPC line technicians, surveyors, and more), etc. Some knowledge of Lyme and tick-borne diseases would be helpful, but not necessary. We can educate you in that regard.

Please reach out to me if you are interested in learning more about being on the Board OR if you would like to help out with advocacy efforts. We are presently working on a website but we need financial assistance for this to come to fruition so fundraising ideas are needed. As well, we will be commencing our awareness building initiatives for early next year very soon and could use help in this regard.

If you are unable to commit to time, perhaps you can commit to a donation OR helping to get the word out that we need financial assistance to get things moving forward. If you know of anyone that might be interested in helping us out financially, please feel free to connect us. Unfortunately, we cannot provide tax receipts at this time as we are not a registered charity (working on it).

We are not asking for a lot of time or effort, just what you feel like you can give. We understand that everyone is busy, but Nova Scotia has the highest rate of Lyme in the country and other tick-borne diseases, like Anaplasmosis, are steadily increasing as well in this province.

We need to do more to help educate the general public and health care providers.

Interested? You can respond to this post or find me on social media.

Diagnosed Anaplasmosis Cases Are Rising

We have been hearing a lot more lately about Anaplasmosis and how it has increased significantly in Nova Scotia and other areas of Canada. With many doctors still unsure about Lyme, it’s time to chat a bit about Anaplasmosis as it is now reportable in Nova Scotia (and Canada), along with Babesiosis and Powassan virus.

Anaplasmosis is a disease caused by the bacteria A. phagocytophilum. These bacteria are spread to people by tick bites primarily from the blacklegged and western blacklegged ticks. Early signs and symptoms are usually mild or moderate and may include: nausea, vomiting, diarrhea, loss of appetite, fever, chills, severe headache, muscle aches. If treatment is delayed or if someone is immune compromised, Anaplasmosis can cause severe illness. Prompt treatment can reduce your risk of developing severe illness. Signs and symptoms of severe (late stage) illness can include: death, respiratory failure, bleeding problems, organ failure.

Although I know Anaplasmosis was found in dog ticks in Nova Scotia in 2017/2018, very few cases were reported in humans until recently. Researchers at Dalhousie University presented findings to the public at Lyme Disease Conferences in Halifax in both 2017 and 2018. Unfortunately we only have a link for the 2018 presentation – “Matthew Curry – Bacteria Prevalence of I. Scapularis and D. Variabilis in NS” –https://youtu.be/RDVE3C4QAIA?si=jmzV2CYfGkRUUBuW. Interesting to watch as it also mentions other things found in ticks that might be causing issues in this province.

This article is from November, 2019 and is mostly regarding Anaplasmosis in animals, although it touches on humans – https://www.saltwire.com/nova-scotia/news/anaplasmosis-tick-borne-disease-showing-up-in-nova-scotia-382205/. Animals have been diagnosed with Anaplasmosis for awhile now in the province. “The first confirmed case of Anaplasmosis in a horse occurred in 2009 – “https://novascotia.ca/dhw/cdpc/documents/Tick-Borne-Disease-Response-Plan.pdf‘. Perhaps there have been cases in humans for awhile as well, but we were not looking for it because of lack of knowledge.

Just like Lyme, Anaplasmosis cases must fit certain criteria before being recorded as an official case – https://www.canada.ca/en/public-health/services/diseases/anaplasmosis/health-professionals/national-case-definition.html. Just like Lyme, recorded cases are no doubt considerably less than actual cases, especially as knowledge is limited regarding the disease.

The following is helpful info for NS health care practitioners from Dr. Jennifer Cram, Provincial Medical Officer of Health, NS Health and Wellness- https://physicians.nshealth.ca/sites/default/files/2024-07/OCMOH%20Memo%20-%20Tick%20Borne%20Diseases%20Program%20Update%2020230724%20Final.pdf. I have been frequently told over the years that although doctors are provided with information on Lyme and tick-borne diseases, they may not be reading it, so take this with you to your doctor, just in case.

It is important to remember the ticks can carry a number of pathogens at one time, or separate from Lyme. Some can be transmitted very quickly so prevention, or prompt and correct removal, is key. Some helpful information in this regard:

Do daily tick checks!