Why Are Doctors Concerned About Treating Lyme?

Many doctors believe that if they don’t follow a certain set of guidelines for Lyme diagnosis and treatment they could get in trouble with their respective Colleges. Even though there are now a number of Lyme guidelines available for use, the main set of guidelines used for diagnosis and treatment around the world is that of the Infectious Diseases Society of America (IDSA) – https://www.idsociety.org/practice-guideline/lyme-disease/#Notes. What should be of interest to all is the Disclaimer under the “Notes” section in this set of guidelines. In brief, it notes that following the guidelines is voluntary; that they do not mandate any specific course of medical care; and that they are not meant to supplant physician judgement.

As several doctors in Canada have either lost their license; been forced to retire; or been forced to stop treating Lyme patients over the last few years, it does seem feasible that doctors should be concerned. However, the Disclaimer on the IDSA guidelines would suggest that physicians are able to review all guidelines that are available and make an informed decision based on their patient’s symptoms.

In Nova Scotia, the present guidelines for Lyme and tick-borne diseases is called the “Guidance for Primary Care and Emergency Medicine Providers in the Management of Lyme Disease in Nova Scotia” of – https://novascotia.ca/dhw/cdpc/documents/statement_for_managing_ld.pdf. The document was prepared by the Nova Scotia Infectious Diseases Expert Group (IDEG). In this document, the IDEG recommends that “Lyme disease should be treated in accordance with the IDSA/AAN/ACR1 and American Academy of Pediatrics14 guidelines”. The Nova Scotia guidelines do not include a link to the full IDSA guidelines, nor do they include the Disclaimer noted in the IDSA guidelines.

When the Nova Scotia College of Physicians and Surgeons was asked a few years ago whether doctors are being investigated if treating Lyme patients, a representative advised that the College does not investigate doctors, unless there is a complaint. If this is, in fact, true, then doctors have some leeway as to how they diagnose and treat Lyme and tick-borne diseases. Certainly more than they think they do anyway.

The following are some of the other Lyme guidelines now available:

  • The following document was prepared for the Canadian federal government – https://cep.health/clinical-products/early-lyme-disease/. It is for “Early” Lyme only. It’s not meant for Early or Late Disseminated Lyme. Hopefully, another set will be available soon for later stages. It is interesting to note the Clinical Working Group Team members. The Team consisted of several members from Nova Scotia; as well as a Nurse Practitioner; a Lyme advocate with lived experience; and a doctor that treats many patients with Lyme and tick-borne diseases.

There may be more; however, these provide a good starting point to attain information.

There have been doctors in Canada, and beyond, that have been successful in being able to diagnose and treat Lyme and tick-borne diseases with a variety of treatment protocols, including longer-term antibiotics – if required. Between the IDSA Disclaimer and their thorough record keeping, they were able to adequately respond to any concerns expressed.

Doctors have the ability to deal with their patients on a case by case basis. ALL patients are different, especially with respect to Lyme and tick-borne diseases. Symptoms can vary from person to person and from day to day. Symptoms can vary due to where on the body the person was bitten; what the tick was carrying; what underlying conditions the patient was already dealing with; and how much time has passed since the bite. I can’t understand why there are some that feel that the same treatment will work for everyone.

In case someone in health care actually reads this, I’m going to add a couple of facts and some information that should help you to diagnose Lyme and tick-borne diseases in your patient, even if they don’t recall a bite; didn’t have an erythema migrans rash; and/or didn’t test positive on the testing presently available.

First of all, the erythema migrans rash, which is a telltale sign of Lyme, is often overlooked or misdiagnosed. Although the bull’s-eye version of this rash is the better known, it is only seen in a small percentage of cases. Other types of rashes are more common. As well, about 20% will not get a rash and of the 80% (or so) that do get a rash, many will not see it due to its location on their body. I have heard of people being initially diagnosed with cellulitis, ringworm, and more, and eventually being diagnosed with Lyme. It is also important to note that it can be very hard to see a rash on those with darker skin.

There are three stages to Lyme – Early localized Lyme (or Acute), Early Disseminated and Late Disseminated. Symptoms can overlap and some people may only present with later stage symptoms. I am aware of at least one person that only presented with Lyme carditis. If left untreated, or under-treated, it may progress from mild, or no symptoms, to serious, long-term disabilities. Early diagnosis and sufficient treatment is key.

Because of the small size of ticks and the fact that they secrete a number of substances to keep the bite from becoming itchy, etc., many people never see the tick that bit them, or are even aware that they were bitten. Unfortunately some doctors disregard Lyme as a potential cause of their patient’s symptoms based on the fact that they were not aware of a tick bite.

I frequently hear that people have been told that their Lyme test came back negative so therefore they do not have Lyme. Unfortunately, there isn’t a test at the moment that can state with 100% certainty that you do, or do not, have Lyme. The sensitivity/specificity rates of the tests vary through the various stages of Lyme and for a number of reasons. Testing presently used in Canada, and beyond, can have false positives AND false negatives. Just because a Lyme test is negative, it does not mean you do not have Lyme and/or another tick-borne disease. For instance, Borrelia miyamotoi, which can result in a Lyme-like illness, is not picked up with the present testing utilized in Nova Scotia, but has been found in some ticks.

Because of the many overlapping symptoms attributable to Lyme and tick-borne diseases, and the concern of a possible misdiagnosis, several questionnaires were developed to help doctors determine if Lyme may be the cause of their patient’s symptoms. One of the more recently developed questionnaires was prepared by a number of doctors in the US. It is called the General Symptom Questionnaire-30 – https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6908481/. All doctors should take the time to review the information and consider using it for those presenting with multi-systemic symptoms, that come and go, and change day by day.

It’s well past time that doctors start to listen to their patients and spend enough time with them to more quickly diagnose and treat Lyme and tick-borne diseases. Although there are many issues hindering that ability, all doctors need to speak up, and out, to ensure the best quality of care for their patients.

Support Groups for Lyme – Are They Needed?

Several years ago a person attended one of my Lyme Support Group meetings and went back to her doctor with questions. Their doctor recommended that they not attend Lyme Support Group meetings anymore. They came back one more time to tell me that. I found that very concerning in that I can’t imagine any health care practitioner telling someone not to go to any other type of Support Group. Why Lyme?

I have been running the NS Lyme Support Group for many years now and I like to think it’s helpful for those that are struggling. We don’t push treatment protocols and we don’t tell everyone that they have Lyme and/or tick-borne diseases.

We listen and don’t judge. We let people vent. We provide an opportunity for those that may not have any other support system to feel like they are not alone, as dealing with Lyme and tick-borne diseases can be VERY lonely.

At our last meeting there was a “newbie” that was recently diagnosed with Lyme after 3-5 years of struggling with steadily increasing symptoms. The diagnosis was via Nova Scotia health, after the “newbie” requested a test. They had a lot of questions about the lack of awareness and knowledge in this province. They also made a lot of good points regarding what is being done poorly here, in the rest of Canada, and beyond.

I thought I would provide a synopsis of some of our discussion to give people an idea of what goes on in a Lyme Support Group and to get people thinking about what needs to be done to help those that may be dealing with tick-borne diseases or even other multi-systemic illnesses. I would also love to hear your thoughts on whether a Lyme Support Group is needed and, if so, why you think doctors are so against them.

One of the issues that arose was regarding how we can help others. It was noted that many people that may be dealing with a later stage of Lyme may not be working so funds are limited. They may also not be able to drive, especially at night. Because of memory issues, for some, they don’t remember all that doctors tell them and they don’t always remember to take notes or record the session (which some doctors don’t allow). The idea of a mobile support system was raised several years ago but never moved forward due to a number of reasons, not least of which is that many people were too sick to volunteer to help others. Getting patients to their appointments; providing them with healthy, prepared food; visiting; etc., is needed.

With many other illnesses, people not dealing with it will help raise funds; they will provide food; they will offer drives; they will jump in with both feet and help wherever they can. With Lyme, many that are not dealing with it personally cannot understand how it can impact someone. They have heard, over and over again, that it is basically a rash and flu-like symptoms. That it’s rare, hard to get, and easy to treat. They have heard that once treatment has been received, it’s eradicated. There is very little information readily available on how untreated and under-treated Lyme can result in severely debilitating symptoms, or even death in some cases. Lyme carditis is no longer as rare as it once one. Cases of Neurologic Lyme are also increasing. Even the fact that there is a fairly large percentage of people that continue to experience symptoms after treatment is unknown by many. I guess it’s fortunate that “Post Treatment Lyme Disease Syndrome”, or whatever you want to call it, is now receiving some press due to “Long Haul COVID” which has some similar symptoms. This may result in some help for Lyme patients.

Unfortunately, even those close to people that may be dealing with Lyme and/or tick-borne diseases sometime tend to back away as they don’t understand what’s happening. Those suffering may lose their friends and even their family. They can be left entirely alone and dealing with an illness that requires many layers to eradicate, especially if they have been dealing with it for awhile.

All this beg the questions – How do we get those not already personally dealing with the issue to help those that are? How do we get others to understand the possible ramifications of something as mundane as a tick bite? How do we elevate the discussion? How do we get people to take this seriously and BELIEVE what their loved ones are telling them? How do we get doctors interested and concerned enough to better educate themselves and listen to their patients?

The “newbie” noted that they hadn’t given any thought to Lyme and tick-borne diseases and that it was all new to them. They noted that the only information available appears to be on social media and the internet and that you need to already be aware of what you are looking for to go look for information. There was nothing to suggest “Could it be?”. When this was raised, I remembered sitting in the Infectious Diseases office a few years ago waiting for my appointment with an ID doctor. There were signs in the sitting room regarding Sexually Transmitted Diseases, but that was it. There was nothing about Lyme and tick-borne diseases. There was no sign saying “Could It Be?” These are needed in all walk-in clinics, ER’s, doctor’s offices, and anywhere else people may go looking for help. They would not only help those dealing with a multi-systemic illness that could possibly be caused by a tick bite, but would also remind medical professionals to consider tick-borne diseases when presented with patients that don’t fit a specific diagnosis. They could be dealing with early or late disseminated Lyme and/or other tick-borne diseases.

The “newbie” also noted that their doctor is a pill pusher, which unfortunately seems like a fairly common problem here in Nova Scotia, and no doubt elsewhere. Rather than trying to get to the root cause of an issue, doctors tend to push symptom relief in the form of pain killers, etc. I’m aware of one new doctor to the province that took on a retiring doctor’s caseload. The new doctor had to wean most of their patient’s off of pain medications. This discussion brought up the problem with Canada’s health care system. In many places doctors are paid per patient and have a limited amount of time to spend with their patients if they want to pay their overhead, and give themselves a wage. With multi-systemic illnesses, you need to be able to spend a considerable amount of time with a patient to discuss all that is going on. A quick, or accurate, diagnosis, cannot happen over multiple appointments, over a long period of time.

During the meeting it was raised, once again, that Lyme is supposed to be a clinical diagnosis. We do not yet have any testing that will definitely tell you whether you have Lyme, or don’t. There are several good questionnaires now available to help with a diagnosis. One of them is the General Symptom Questionnaire-30, which was prepared by doctors from a number of research facilities in the United States – https://www.frontiersin.org/articles/10.3389/fmed.2019.00283/full. It was also noted that those with early or late disseminated Lyme generally have fluctuating symptoms, with every day being different than the last. If a knowledgeable doctor could take the time to go over all of the symptoms and how they are presenting, a quick and accurate diagnosis could be made. As this is not the case at the present time, a dedicated clinic, with doctors fully versed in all stages of Lyme and the various tick-borne diseases, is sorely needed. The sooner the better.

Also raised during the meeting was the issue of doctors, with only general knowledge of Lyme, who prescribe antibiotics to those that have been dealing with the issue for weeks, months, or even years, yet don’t offer any other type of help. Of significant importance is the possibility of a Jarisch-Herxheimer response to the antibiotic which can severely impact their patient in a number of ways. Here are two articles worth reading: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7667941/ and https://www.cmaj.ca/content/194/27/E939. The “newbie” noted that they became quite ill upon starting the antibiotic and located information on a “Herxheimer” reaction on the internet but their doctor had never heard of it. Providing antibiotics to someone that had dealt with the issue for a considerable period of time can result in significant issues. Yet another reason for a dedicated clinic(s), populated with health care professionals that are FULLY educated on all aspects of Lyme and tick-borne diseases.

Every meeting is like this. It jumps around and touches on many different issues. We chat about what people are doing that is helping them. We chat about different areas where help can be found, including Maple, the Holistic Health Centre, and Signature Health, which were all mentioned during our last meeting. We chat about ways people can help boost their immune system by improving their sleep quality/quantity; reducing stress; getting a little exercise; eating better; etc.

We also chat about how every single person is different when it comes to early and late disseminated Lyme. This is due to so many factors, such as: how long ago they were bitten; where the bite occurred on their body; whether more than one thing was transmitted; what other health issues they were already experiencing; and so much more. Since tick-borne diseases can affect everyone differently, doctors shouldn’t expect one treatment to help them all; but, for the most part, they do.

We have also been fortunate to have had an alternative/complementary health care practitioner sit in on our meetings on occasion. They listen to our stories and comment when, and if, appropriate. They also provide some much needed advice on occasion. This has been very helpful for many.

If you think you might be dealing with tick-borne diseases, or you are a support person for someone who does, feel free to reach out and attend one of our monthly NS Lyme Support Group meetings. We have them on the second Tuesday of every month at noon and have been holding them via Zoom since the start of COVID. At some point we will get back to in person meetings in the Bedford area, but will continue on with Zoom as well as people from throughout the province, and beyond, have been able to attend.

I think you can tell from the above that I think Lyme Support Groups are needed, but do you? Would love some feedback.

Don’t Stop Those Tick Checks!

Although thoughts of ticks tend to wane as the summer comes to an end, they shouldn’t. This time of year ticks can be very active so regular tick checks should still be a part of your daily routine.

Along with daily tick checks, there are many other things you can do to minimize a tick bite. First, and foremost, however, is to know where they are located. Unfortunately, they are no longer just in the woods like we have been told for years. Instead, they can be along golf courses, parks, in schoolyards, and in your own yard. Anywhere there is shade and moisture, they can potentially be found.

If you wear light-coloured clothing you can see any ticks before they find skin. Carrying a small lint roller helps to pick them off your clothes and skin before they have a chance to attach. When doing yardwork, or similar, you can wrap two-sided tape on boots or pants to trap them on their upward journey.

Of course, an insect repellent, made especially for ticks, is helpful. If it includes picaridin/icaridin, even better as it’s less harmful than DEET.

Although more for those that spend a lot of time in tick environments, permethrin treated clothing is the way to go. Mark’s sells a small assortment of pretreated clothes, with some others available on-line or in the US.

If you do find an attached tick, don’t panic and pull it off with your fingers. The following is a video by the federal government on how to properly remove a tick – https://www.canada.ca/en/public-health/services/video/lyme-disease-properly-remove-tick.html. Remember, you don’t want to squeeze it’s body, pull it out too quickly, or use any of the methods that are frequently seen on-line where you cover the tick with a substance such as Vaseline.

Take ticks seriously and stay safe!

Revisiting the Prophylactic Treatment for a Known Tick Bite

I’ve touched on the topic of the prophylactic treatment for a known tick bite before but I wanted to expand upon it just a bit as I personally feel that it could cause more harm than good.

Because I have been hearing a number of stories on the misinformation that pharmacists and doctors are giving regarding this treatment protocol, I thought I would provide some basic information here.

First of all, the following is from the NS College of Pharmacists Press Release:

“Screening will include whether the tick was a blacklegged tick, whether the tick bite occurred in the previous 72 hours and whether the tick is attached for at least 36 hours.”

I think screening should also include the question as to how the tick was removed as an improper removal method could force anything the tick was carrying into its host.

I have heard that some pharmacists, and doctors, have advised that they cannot provide the prophylactic treatment because they do not have a bull’s-eye rash. IF you have the better known, but less seen, bull’s-eye version of the erythema migrans (EM) rash then you need to go to a doctor for the full treatment. It’s too late for the prophylactic treatment.

The following is from the NS Health and Wellness News Release:

“The treatment is only recommended if it can be administered within a 72 hour window after the tick is removed. If there are any symptoms of Lyme disease, such as a rash at the bite site, people need to see a doctor or nurse practitioner for other treatment options.”

It is interesting to note that the Centre for Effective Practice (CEP) document “Early Lyme Disease Management in Primary Care” notes that:

“As post-exposure prophylaxis is not 100% effective, patients should be monitored for the development of signs and symptoms for 30 days.”

I have not seen this caveat on any of the Nova Scotia documentation on the issue of prophylactic treatment of a known tick bite. I also noted that the CEP document suggests attachment time of approximately 24 hours, rather than 36.

It is safe to say that the prophylactic treatment of a known tick bite has limited research as to its efficacy. Two meta analyses that I have read have suggested that the available evidence supports the use of a prophylactic dose for the treatment of a known tick bite, but that further confirmation/research is required.

According to the limited research this treatment MAY prevent an EM rash which is one of the easiest ways to diagnose Lyme. It is also of importance to note that antibiotic usage can affect testing for Lyme and can result in a false negative. Without one, or both, of these objective signs it can be problematic to get a proper diagnosis if the post-exposure prophylaxis is not effective.

The correct information needs to be better disseminated to all health care professionals AND the general public.

Education is key.

Tick & Tick-borne Disease Facts for Lyme Disease Awareness Month

Although this is the last day of Lyme Disease Awareness Month, awareness should be year-round as ticks can be active any month of the year in many parts of the world, including in Nova Scotia.

I posted a fact on my Twitter account for every day of May, 2022, and I’m compiling them all here for year-round information. Although some repetition, I’m including them all. I have also provided some additional info/links. Most links are not “live” for some reason so you will have to cut and paste.

Fact #1 – Although a bull’s-eye pattern is the best known Lyme rash, it is one of the least common of the erythema migrans (EM) Lyme rashes – https://www.health.com/condition/lyme-disease/lyme-disease-rashes.

Fact #2 – Proper tick removal is very important. Don’t squeeze the tick’s body, cover to smother, spin it with a Q-tip, or burn it with a match – https://www.canada.ca/en/public-health/services/video/lyme-disease-properly-remove-tick.html.

Fact #3 – Ticks do not fly or jump. They wait for a host, in a position known as “questing”, on the tips of grass or shrubs.

Fact #4 – Lyme carditis is when the Lyme bacteria, Borrelia burgdorferi, attacks the heart. If not caught in time, and appropriately treated, it can lead to death. Once thought to be very rare, cases are growing.

Fact #5 – Black-legged ticks are not the only ticks carrying diseases and Lyme isn’t the only thing we need to worry about. Educate yourself.

Fact #6 – The annual number of cases could be 10 times higher than reported – https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6315539/ & https://bmcpublichealth.biomedcentral.com/articles/10.1186/s12889-019-7219-x

Fact #7 – There are now made in Canada guidelines for Early localized/Acute Lyme. Although not 100%, they are better than the IDSA guidelines – https://cep.health/clinical-products/early-lyme-disease/.

Fact #8 – The prophylactic dose prescribed by pharmacists for a tick bite is based on limited research – https://www.ncbi.nlm.nih.gov/books/NBK545493/.

Fact #9 – Although it generally (but not always) takes some time for Lyme to be transmitted once a tick attaches, Powassan virus has been found to transmit in as quickly as 15 minutes.

Fact #10 – Without a test that can diagnose Lyme 100% of the time, this diagnostic tool should be on everyone’s radar – https://www.frontiersin.org/articles/10.3389/fmed.2019.00283/full.

Fact #11 – If not treated or treated appropriately, there can be three stages to Lyme: early localized, early disseminated and late disseminated. Symptoms can overlap.

Fact #12 – A reliance on “signs”, rather than “symptoms”, to diagnose Lyme can lead to many missed cases – https://www.columbia-lyme.org/signs-and-symptoms.

Fact #13 – Remember this? Caused quite a stir. However, many people do not realize how small a tick can be so it’s worth sharing again – https://www.prevention.com/health/a27655728/cdc-ticks-poppy-seed-muffin-photo/

Fact #14 – The annually reported confirmed/probable case #’s for Lyme are considerably less than the actual #. How less? We don’t know for sure – https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6315539/ & https://bmcpublichealth.biomedcentral.com/articles/10.1186/s12889-019-7219-x.

Fact #15 – According to Johns Hopkins, the western zone of NS has one of the highest incidence rates of Lyme in North America – https://www.saltwire.com/atlantic-canada/news/western-nova-scotias-rate-of-lyme-disease-among-highest-in-north-america-100665847/.

Facts #16 & #17 – Lyme is not just a rash and flu-like symptoms – Lyme arthritis, Lyme carditis & Neurological Lyme are all possible. Educate & Prevent!

Fact #18 – Due to their size, the fact that the tick can secrete an anesthetic so you don’t feel the bite, & their preferred locations on your body, many people don’t realize they were bitten. Knowledge of symptoms is key.

Fact #19 – There are many things you can do to your property to make it less hospitable for ticks – https://novascotia.ca/dhw/cdpc/documents/Landscape-Management-Handbook.pdf. These should reduce the number, but not totally eliminate, so prevention measures are still key.

Fact #20 – “Lyme disease needs to be treated! If left untreated, the rash and fever will eventually go away, but infection can later spread to joints, the heart, and the nervous system.” – Stamford Health.

Fact #21 – Some people can become chronically ill due to a tick bite. We do not yet know why – https://www.columbia-lyme.org/chronic-symptoms.

Fact #22 – Lyme arthritis can be misdiagnosed as juvenile arthritis – https://www.columbiadoctors.org/childrens-health/pediatric-specialties/rheumatology/treatments-conditions/lyme-arthritis.

Fact #23 – “Untreated Lyme disease during pregnancy can lead to infection of the placenta” (CDC) – https://www.frontiersin.org/articles/10.3389/fmed.2022.816868/full.

Fact #24 – Borrelia burgdorferi can affect your bones – https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5278181/.

Fact #25 – Powassan virus can transmit very quickly. Therefore, prevention is key – https://www.columbia-lyme.org/powassan-virus.

Fact #26 – Did you know that the IDSA Lyme Guidelines have a Disclaimer, under the Notes section, advising that following the guidelines is voluntary & not intended to supplant physician judgement. All doctors should make themselves aware of the FULL Disclaimer.

Fact #27 – Tick testing is available in Canada, for a fee – https://geneticks.ca. Although not a diagnostic tool, it can provide beneficial information.

Fact #28 – Ticks can be transmitters of a number of things – https://www.canada.ca/en/public-health/services/reports-publications/canada-communicable-disease-report-ccdr/monthly-issue/2019-45/issue-4-april-4-2019/article-2-increased-risk-tick-borne-diseases-climate-change.html. This list, and no doubt more. Canada needs to do better keeping us up-to-date on what’s here.

Fact #29 – There is a very good, made in Canada, educational resource now available for nurses & other health care providers – https://vbd.casn.ca.

Fact #30 – Many Lyme patients have undertaken considerable research while stuck at home too sick to do anything else. Perhaps Doctors too busy to do research should start listening to them.

Fact #31 – On the last day of #LymeDiseaseAwarenessMonth I want to reiterate that Lyme isn’t rare; hard to get; or always easy to treat; and that it’s not always just a rash and flu-like symptoms. It’s also not just Lyme that can transmit. Prevention & Education are key!

Lyme Disease Awareness Month – May 2022

Well folks, it’s that time of year again when you actually see some awareness being raised.

I am pleased to advise that there were a couple of firsts in Nova Scotia this year:

1. We had our first ever flag-raising which took place at Halifax City Hall on Tuesday, May 3rd. The flag raising also included the reading of the Halifax Regional Municipality’s Lyme Disease Awareness Month Proclamation by Mayor Mike Savage, as well as the reading of the province’s Proclamation by Minister Steve Craig, representing Premier Tim Houston.

2. Province House was lit “lime” green this year on May 3rd for the first time in honour of Lyme Disease Awareness Month. Halifax City Hall was once again lit “lime” green on May 3rd as well.

There are a number of things happening in the province this month, including:

  • On May 5th there will be a free “Changing Lyme for Life Series” put on by FREmedica. The featured speaker is Dr. Christine Schaffner, ND. Tarin Boucher, the winner of the WAVE 1 during a presentation to our NS Lyme Support Group, will be telling her story as well. Registration is required and you could win a WAVE 1 – https://fremedica.com/.
  • Our regularly scheduled Lyme Support Group will be Tuesday, May 10th at noon. Please let me know, at donna.lugar@outlook.com, if you would like to receive a Zoom invite.
  • On Wednesday, May 11th, there will be a CBC Maritime Noon call-in show featuring Dr. Vett Lloyd and myself. It will be starting at approximately 12:10 and going until 1:00.
  • On Monday, May 16th, at 1:30 pm, Dr. Janet Sperling, an entomologist and new President of the Canadian Lyme Disease Foundation, will be giving a free Public Lecture on Lyme disease in Nova Scotia, via Zoom, put on by the Seniors’ College Association of Nova Scotia. Registration is required via www.theSCANS.org.
  • On Thursday, May 19th, we will be having the monthly meeting of the NS Lyme Advocacy Group. We are always looking for people interested in helping out with events, etc. You can reach out to me if interested.

There are also some exciting things going on elsewhere this month. For instance the movie “The Quiet Epidemic” premiered at Hot Docs in Toronto. There are still a couple of days left to purchase the ability to view – https://hotdocs.ca/whats-on/hot-docs-festival/films/2022/quiet-epidemic.

The LivLyme Foundation is hosting a free all day virtual Summit on May 7th – https://livlymefoundation.org/. Lots of amazing speakers, such as Dr. Adrian Baranchuk of Queens University; Dr. Timothy Haystead of Duke University; and many more – https://livlymefoundation.org/.

I hope you all have a chance to educate yourselves and help raise awareness this month, perhaps by decorating your homes, or yourself, in lime green for the month of May. Writing a Letter to the Editor for your local paper; telling your story on social media; or speaking to your government representatives are also great ways to help.

Stay safe folks!

Life is Not Rosy

These last couple of years have been horrendous for so many people. Many lives have been lost and many more are suffering in a variety of ways. People have lost their incomes. Mental health is at an all-time low. Education has suffered. Most health issues, other than COVID, and maybe already diagnosed Cancer, have seemed to take a back-burner, causing unknown suffering and deaths.

I know I haven’t been functioning well for quite some time. Because of my own regular health worries, COVID and worrying about the mental health of my family, my own mental health has taken a significant dive. I can’t focus and I have no interest in anything that I did before. I can spend hours, and hours, and hours, doing nothing other than perhaps playing a mindless game. Some may say it’s due to the COVID vaccine as I have had two, plus the booster. Some may say it’s due to the lockdowns and uncertainty. Others may say it’s still due to tick-borne diseases. At this point, there is probably no way to figure it out. You just have to ride the wave.

I’m seeing many family members going through their own mental and physical health issues. We don’t know what the cause of theirs are either and many doctors are so stressed and overworked due to COVID they no longer have the ability to deal with such issues.

I am afraid of COVID. I was born with many health issues and have experienced some over most of my life. My lungs are not strong and dealing with tick-borne diseases has shown me that I do not bounce back like some might. However, I also don’t like the present state of fear that many of us are living in, a lot of it with the help of mainstream media and social media. I think it’s time we learned to live with it, just like we do with the flu. The fact that there have been less cases of the flu since hand washing properly; keeping a reasonable distance from others; and staying home when sick, means, to me anyway, that many of us may not have been doing some of these things already, for whatever reason. The masks, of course, have no doubt helped as well even if it’s for no other reason than to keep people mindful of personal space.

Nova Scotia had been lucky, for the most part, during the early stages of the pandemic. Although there were many deaths, it could have been much worse. However, with the new variants, nothing we do seems to stop the spread and deaths are increasing. As well, vaccinated and unvaccinated are being pitted against one another, even when some of the unvaccinated have legitimate reasons for not wanting to take a chance with the vaccine. If in a place like Nova Scotia, where many have been vaccinated and follow restrictions, significant cases and deaths are still taking place, maybe it’s time to rethink what we are doing.

Trying to help people who are possibly dealing with tick-borne diseases prior to COVID was hard. Trying to help them during COVID is downright impossible. The majority of Lyme researchers have been absconded to COVID research. Same with many doctors, such as the doctor that was running the Winnipeg Tick Collaborative Care Service and those that were supposed to be working on Lyme disease initiatives here in Nova Scotia. Of course, people also cannot easily cross the border to obtain treatment as many Lyme patients have decided to forego the vaccine due to their ongoing health issues. Those already sick are getting sicker, and many more people are being bitten as they are being told to get outside and get fresh air, without any warnings about the hazards of ticks.

I apologize for rambling, without saying much at all, but that’s were my head is these days. Hopefully, as weather starts to improve, and I can get outside more, things will be better. Here’s hoping!

Stay safe folks, and keep an eye on your mental health.

Lyme Carditis – When Lyme Affects Your Heart

There are many people that believe that Lyme is no big deal. It’s just a rash and flu-like symptoms. No worries. Why should they care.

Lyme can affect people in different ways; with different symptoms; and yes, it can cause death. There are three stages to Lyme: Acute Lyme, Early Disseminated and Late Disseminated. The bacteria, Borrelia burgdorferi (Bb), can affect any system in your body. Although Neurological Lyme is a big issue and more people now know about it, very few people know about Lyme carditis.

There is a doctor in Canada who has been trying to raise awareness of Lyme carditis for quite some time now. Dr. Adrian Baranchuk is a Professor at Queen’s University and a Clinician-scientist at Kingston General Hospital. He has written papers regarding the subject and has been interviewed numerous times. However, what he has been saying has, for the most part, fallen on deaf ears.

Lyme carditis is when Bb attacks the heart. According to the UPMC Heart and Vascular Institute, “The bacteria hinders your heart’s electrical system, as it enters the heart tissue and can interfere with electrical signals, causing a condition called heart block.” (https://www.upmc.com/services/heart-vascular/conditions-treatments/lyme-carditis). According to the CDC, “Between 1985 and 2019, eleven cases of fatal Lyme carditis were reported worldwide.” (https://www.cdc.gov/lyme/treatment/lymecarditis.html)

Dr. Baranchuk wrote a blog post for the Lyme Disease Association, Inc. in May of 2021 – https://lymediseaseassociation.org/blogs/lda-guest-blogs/adrian-baranchuk-md-guest-blog/ – in which he notes that “Other cardiovascular manifestations include alterations of the ‘motor’ of the heart (sinus node disease) (3), a disorganization of the cardiac rhythm that increases the risk of stroke (atrial fibrillation) (2), lesion in the distal cables of the heart (bundle branch blocks) (4), and different degrees of inflammation of the layers of the cardiac walls (myocarditis, pericarditis, and endocarditis) (2).”

Dr. Baranchuk also notes in the blog entry that “Decision for permanent pacemaker implantation should wait until completion of antibiotics as heart block in LC is often reversible.” Unfortunately, very few doctors are aware of Lyme carditis and even more will not consider it as they don’t believe it is common.

Although Lyme carditis may not be as common as the erythema migrans rash, and some other more objective symptoms, I do believe it is much more common than known. For instance, since 2011, I have spoken to several people just in Nova Scotia whose hearts were affected by Bb. In some cases they received IV antibiotics and in others they received a pacemaker. In one case, a young gentleman received a pacemaker but a curious doctor started to ask questions due to his age and how his heart was affected. This resulted in testing for Lyme, which came back positive. Unfortunately, curious doctors seem to be few and far between these days, for a number of reasons.

If you are having light-headedness, fainting, shortness of breath, heart palpitations, and/or chest pain (CDC) and a specific cause has not been determined, please give Lyme carditis some consideration. If you spend any time outdoors or have pets that do, please raise the issue with your doctor. It is better to be safe, than sorry, and it is treatable.

The following articles/interviews regarding Lyme carditis should provide enough information to investigate further. There are many more documents regarding this issue so I don’t understand why it still seems like an unknown issue by many health care providers. Please educate yourself, and your medical team, if necessary:

I’m not trying to terrify people with the articles I write. I don’t want to keep people from going outside. I do, however, want people to take the issue more seriously and undertake appropriate preventative measures when heading outdoors and to make sure pets that go outside are checked carefully.

Stay safe!

Ticks Can be Active All Year – But Especially in the Spring and Fall

Due to the limited awareness/information campaign undertaken by Nova Scotia Health regarding risks associated with tick bites many people seem to think that they are only a problem in the spring and summer, if that. In Nova Scotia, and many other areas, temperatures allow for ticks to be active any month of the year. They have been found on people and pets in December, January and every other month when temperatures rise above freezing.

With this being the time of year where people are putting their yards to bed for the winter; hiking to see the beautiful fall foliage; hunting; and just enjoying the outdoors prior to the winter months; appropriate tick bite prevention measures need to still be undertaken. There are a lot of things you can do to help prevent a tick bite, but here are a few easy ones:

  • tuck your pants into your socks and your shirt into your pants to extend time for you to check for ticks before they find skin;
  • wear light coloured clothing to ensure that you will see any crawling ticks before they reach your skin;
  • carry a lint roller or sticky tape with you to pick off any unattached ticks;
  • use permethrin treated clothing (available at Marks and on-line) and either DEET or Icaridin on your skin;
  • stay out of long grass;
  • don’t jump in leaf piles;
  • toss clothing into a hot dryer for 15 minutes when you get home to kill any hitchhiking ticks;
  • shower shortly after getting home to wash off any unattached ticks;
  • do a thorough tick check, especially in warm, moist areas;
  • if you find an attached tick, ensure that you remove it correctly – DON’T squeeze it’s body (here is a good tick removal video put out by the federal government – https://www.canada.ca/en/public-health/services/video/lyme-disease-properly-remove-tick.html.

Although we do not yet know how many confirmed/probable cases of Lyme there were in Nova Scotia in 2020, we do know that in 2019 there were 830 confirmed/probable cases, which was a substantial increase over the 454 cases in 2018. We also know that the confirmed/probable case numbers are not the actual annual number due to under-reporting, etc. Although there presently isn’t agreement as to how many cases are being missed annually in Canada, and Nova Scotia, it is agreed that cases are being missed. Therefore, the number of annual cases are no doubt much higher.

The following are two publications regarding how many cases we may be missing in Canada:

Whether we should multiply the case number by 2, 5, 10, or more, to get the actual number of cases, the annual numbers are higher than what is frequently quoted in the media, resulting in many not giving Lyme and Tick-borne diseases much thought. It is time to change that perception so that everyone undertakes appropriate preventative measures.

From the calls, emails, social media posts, etc., in 2020 and 2021, the number of people bitten by ticks has again increased.

Please take the issue seriously and do what you can to protect yourself from ticks. They are not going anywhere; they are going to increase; the number carrying diseases will no doubt continue to increase; so we need to learn to live with them, but have a healthy fear of them. Fresh air and sunshine is imperative for good health so we cannot stay in our homes afraid of ticks.

Stay safe!

Pharmacists Able to Prescribe a One Dose Prophylactic for Lyme

Nova Scotia is the latest of places where pharmacists are allowed to prescribe a one dose prophylactic upon a known tick bite, within 72 hours of the bite, and if there are no symptoms.

Unfortunately, many see this as a good news story, but I’m not so sure.

The following is a Canadian research document from 2019 regarding the single dose prophylactic- https://www.ncbi.nlm.nih.gov/books/NBK545493/. If I am reading this document correctly, the decision to provide this one dose prophylactic is based on limited, and outdated, data. The recommendation in the document is “Further high-quality studies are needed to confirm the results of this RCT with appropriate enrollment and follow-up of a validated outcome in a generalizable setting. Ideally this research would be conducted in Canada to inform Canadian clinical decision-making and policy making.”

So, why are we promoting it now? Before more studies/research is undertaken?

As well, there is information available that suggests this single dose prophylactic may only prevent a rash. However, it should be noted that only about 80% actually get a rash and of that 80% many don’t see it or don’t realize that there are other types of erythema migrans rashes. It’s not just a bull’s-eye rash. We also don’t know if it is effective for co-infections, of which there are many in Nova Scotia.

As well, apparently antibiotics can interfere with future Lyme testing, resulting in difficulty in getting diagnosed – https://www.canada.ca/content/dam/hc-sc/migration/hc-sc/dhp-mps/alt_formats/pdf/medeff/bulletin/carn-bcei_v22n4-eng.pdf.

This topic is not new. In 2019, the following article was written by another Nova Scotia resident, with better credentials than I – https://www.saltwire.com/nova-scotia/opinion/counterpoint-theres-no-evidence-quick-dose-of-antibiotics-will-stave-off-lyme-309057/.

The use of this prophylactic has been used in other areas for quite some time now. The following is an article from Rhode Island – https://www.pharmacytoday.org/article/S1042-0991(17)31328-2/fulltext?. It’s interesting to note that it mentions that it is not 100% guaranteed to work and that people need to be aware of that. I’m not sure that this fact is being adequately communicated. I’m also not sure if any follow-up is being provided to ensure that people remain symptom free.

If this prophylactic treatment does not work, and subjective, rather than objective, symptoms appear, it may be very difficult to obtain a diagnosis as most doctors require visible, objective, symptoms prior to a diagnosis and treatment. Even some possible objective symptoms, such as bell’s palsy; swollen, inflamed joints; heart block; etc., are not always considered to potentially be the result of a tick bite, especially in areas newer to Lyme carrying ticks.

Another concern with this prophylactic treatment is that pharmacists need to see the tick and if the tick is taken in to the pharmacist it may be disposed of rather than tested for any pathogens. Although it appears that the only tick testing being undertaken in Canada at the moment is at Geneticks, which is a private lab and testing is for a fee, I highly recommend that people have ticks tested that were attached to a human, or pet, and were either removed incorrectly (body squeezed) or engorged. As there are a number of things that have been found in ticks (both blacklegged and dog) in the province, I suggest the full panel. This tests for a number of things, most, if not all, of which have been found in the province.

Please do your research prior to agreeing to the one dose prophylactic.