Q&A panel FAQ summary – The Quiet Epidemic

The Quiet Epidemic and panel information.

I’ve heard of using ant spray with permethrin to keep ticks off socks and clothing when hiking. Does this work and is it advisable? (Janet Sperling)

Ant spray can be used but it’s important to be careful when using it. Never spray permethrin on your skin because it won’t work. Take your permethrin treated clothing off when you get home. Despite some risk, many people believe that there is no safer way to protect yourself from ticks.  It’s not one or the other. Protection requires avoiding the ticks, wearing proper permethrin treated clothing with long sleeves and pant legs tucked into socks, a repellent, and thorough prompt tick checks.

Bill C-442, An Act respecting a Federal Framework on Lyme Disease, was passed in 2014. That’s nearly 10 years ago. The act included a  mandate for new guidelines for treatment of Lyme disease to be developed. However, the result ended up being a re-endorsement of the same American guidelines that were noted in the preamble of the bill as being  the cause of needless patient suffering! What lessons did you learn in trying to make change, especially for people suffering from chronic Lyme disease? (Elizabeth May)

We got through a private members bill, which is a very rare thing. We created a Federal strategy on Lyme and a requirement that various entities fulfill their responsibilities under the Federal Lyme strategy. The National Health Officer, who started out very skeptical, became very convinced this was a very serious and significant issue after attending the full 3-day conference. After he left (the position), an interim Public Health Officer was appointed who did not seem as convinced. The experience at the 3-day forum with so many experts speaking and so many Lyme patients and Lyme literate doctors speaking changed where we were going with the strategy but then it disappeared to another group of people. Unfortunately the change in personnel at the government level took everything off track.  

The main lesson in terms of success is in the work that all of you  (CanLyme panelists) are able to do and the fact that people in this story who are the most exhausted, the least able to cope, dealing with a health crisis, dealing daily with the impacts of Lyme, were able to collect so many petitions and take them to so many MPs, so many senators to really educate people is just phenomenal.  Now that we are coming out of the fixation on the pandemic, we are getting media interest again. We are picking up where we left off. We have a tremendous amount of public support. We have a lot of media support. We have a tremendous amount of people who think ‘shouldn’t this be solved by now? Didn’t we get a bill passed?’ We have to keep on with what we’ve been doing, recognizing that there is a professional group who are rightly questioning  the current thinking on Lyme. We need to help get them working towards solutions for people dealing with Lyme.

The documentary highlighted a vaccine that didn’t succeed.  We now hear about a vaccine being developed by the French and Americans.  What is the viability of a vaccine?  When might we see something in Canada? (Jim Wilson)

Although vaccines are an important tool, it’s too early to say that we have our silver bullet. While we may end up with an effective vaccine, ticks carry more than just Lyme disease. All vaccines have their limitations and in a lower risk region of Canada, it’s likely that the very difficult diagnosis of Lyme disease would be even harder to get for someone who had been vaccinated. We need better testing. 

Chronic Lyme was the focus of this documentary.  What should patients do when they hit a wall and can’t get proper treatment or answers?  (Dr. Sarah Keating)

Chronic Lyme is still not accepted as a diagnosis by many doctors, especially infectious diseases doctors in Canada who rely on the flawed and outdated IDSA (Infectious Diseases Society of America) guidelines. If you can find an ILADS (International Lyme and Associated Diseases Society) trained doctor, you are much more likely to receive treatment.  

Some impressive diagnostic imaging to find Lyme spirochetes in the body was featured in the documentary developed by Dr. Spector.  Is that something we’ll be able to do in Canada? (Janet Sperling)

Dr. Neil Spector and now his colleagues, Dr. TImothy Haystead at Duke University and Dr. Matthew Redinbo at North Carolina Chapel Hill are developing small proteins that can attach to Lyme spirochetes. With a fluorophore attached to these proteins you could have a CT scan that would show that you do indeed have chronic Lyme disease. This is an area of active research with promising initial results so we’re definitely keeping an eye on the developments.

What are the biggest barriers to better diagnoses and treatments in Canada? (Dr. Sarah Keating)

1. The biggest barrier to diagnosis is lack of an accurate blood test. The current tests are prone to false negative results and only very rarely false positive results. For Canadians, a positive test result almost certainly means you have Lyme disease.  We require more research to develop tests with high sensitivity and specificity since very few spirochetes can create many and complicated symptoms.
2. Acceptance of clinical diagnoses by doctors who are trained to recognize symptoms of Lyme disease remains rare in Canada. Most doctors rely on the flawed blood tests since they are still unfamiliar with making the diagnosis on symptoms alone.  Education of doctors in how to make the clinical diagnosis is critically important. 
3. Tick testing can  guide a doctor. It is far easier to identify  pathogens found in a tick using PCR  than it is to test a human for those same pathogens. Although some doctors are willing to treat based on tick testing results others remain unconvinced. We need to better understand how best to use tick testing results as supportive information for human diagnosis.

What will it take to make changes to our health care system to support Lyme diagnosis and treatment? (Janet Sperling)

Committed people who are willing to devote a lot of emotional energy. We know that there is a lot of burnout among the Lyme advocates. People like Jim have spent decades working to see change. 

1. Make sure we don’t lose momentum. The things that CanLyme has been saying for decades are now considered mainstream by National Geographic and Canadian Geographic so stay focussed.
2. Long COVID is a huge problem. Make sure that infectious diseases doctors recognize that ‘long Lyme’ is equally important. 
3. Broadening our understanding that a single disease is bad but two or more diseases can be worse. For example, people with coinfections such as Babesia can be even sicker than those people who have ‘pure Lyme’.
4. From the point of view of the health system – accept clinical diagnoses by ILADS trained doctors
5. We need to change our approach – Family doctors desperately need more education – we need more research to know which treatments are most effective – CanLyme can help to provide this

What percentage of ticks carry the bacteria that cause disease? (Justin Wood)

The percentage of ticks infected with Lyme disease depends on the region and is highly variable, even from one year to the next. In Canada, anywhere from 15% to 50% of Ixodes scapularis ticks can carry Lyme disease https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4466818/ and/or other co-infections. https://ncceh.ca/documents/evidence-review/review-ticks-canada-and-health-risks-exposure.   

If someone found an embedded tick, what should they do first?

1. First, follow the guidelines for safe tick removal: https://canlyme.com/lyme-basics/tick-removal/ ) then go to your doctor. Lyme disease is easiest to treat in the early stages, so it’s crucial to seek immediate attention if you suspect you may be infected.  Keep in mind that blood tests done on a patient with an early infection will usually provide a false negative as it takes time for antibodies to appear in the blood, so monitor your symptoms. (Justin Wood)
2. When possible you should also submit the removed tick for testing to help identify any pathogens it is carrying. Geneticks.ca is a good option as it provides results quickly. (Justin Wood )
3. Chronic Lyme can present with numerous different symptoms and patients can be misdiagnosed and treated for a variety of other very serious illnesses such as Arthritis, Crohn’s disease, Lupus, psychiatric disorders, MS and Alzheimer’s. (Jim Wilson)

What is the most neglected area of diagnosis and treatment of Lyme disease right now?   (Dr. Sarah Keating)

1. Most current Lyme treatment recommendations are based on a limited set of data from patients that were easy to diagnose and treated early in the disease. We believe more research and physician training are required. 
2. In addition, there is evidence that a single dose of antibiotics may just mask the rash associated with Lyme but does not effectively treat the disease, which could lead to persistent infection. Given that Pharmacists in Ontario and Nova Scotia can now prescribe single-dose treatment for those with a tick bite we firmly believe that further study is required. 

CanLyme has an outdoor education program. Can you fill us in on how well it is being adopted and where. Are children’s camps picking up on the program? (Janet Sperling)

The outdoor education program is being run by Canlyme director Suzanna Wong in BC. She’s presenting to teacher groups and it’s well received by individual teachers. Unfortunately, it’s not part of the curriculum in any province  that I know of. Right now we’re relying on individual teachers. Anyone who would like to promote this in their province is welcome to contact CanLyme education: education [at] lookingatlyme [dot] ca.