Looking at Lyme

In this episode Sarah talks research, Canadian research that is, with Dr. Melanie Wills. She is the Director of the G. Magnotta Lab at the University of Guelph, conducting research and studying the diagnosis, prognosis and treatment of Lyme disease. She became interested in researching Lyme disease while working on her PhD, when her own health history intersected with her research interests. When a doctor suggested she may have symptoms of Lyme disease, Dr. Wills agreed that her symptoms were similar, but she had been tested, and Lyme disease had been ruled out. At the doctor’s recommendation, she explored further into the disease and the testing for it. When she realized that the research around Lyme disease was inadequate, her career moved toward helping to fill that gap while at the same time incorporating her PhD and her lived experience with the disease. Dr. Wills recalls how conversations with fellow researcher Vett Lloyd, Jim Wilson (CanLyme President) and the G. Magnotta Foundation resulted in the collaboration behind the lab located at the University of Guelph. 

Dr. Wills talks about their research examining the different forms that Borrelia (Lyme bacteria) can adopt, including round bodies and biofilms, and what role they have in the expression of the disease. She is also looking at how a person’s genetics and the genetics of the bacteria might play a role in how the disease is expressed. Dr. Wills points out that the body’s reaction to the bacteria can cause an excessive inflammatory response, and how that may differ from person to person. She also describes their research study which looks at peoples’ experiences with Lyme disease including their interactions with the medical system.

One of the other exciting areas of research in her lab is the development of a new diagnostic tool for Lyme disease. Dr. Wills takes us into the science and history behind the current Canadian testing protocol and explains some of the shortcomings of this protocol in terms of immune response and the inability to rule out ongoing infection using these tests. 

People with chronic Lyme can’t help but notice the many similarities between Lyme disease and COVID-19. Dr. Wills has been working with researchers at Mount Allison University to study the chronic complications of COVID-19. Studying these symptoms and comparing them to Lyme disease may help to determine which systems in the body may be involved for both diseases. She tells us about other research happening now that may help us to understand what is going on with a certain population by looking at genomes. 

Dr. Wills shares a vision for advances in research in Lyme disease, including more collaboration between researchers and points out that the political landscape is currently hampering such collaboration. She is also concerned that, because Lyme disease has been inaccurately framed as a disease that is easily treated, there has been little interest in funding better treatments and research. Despite all of the challenges Dr. Wills has had to manage both personally and professionally, she believes that we are up to the challenge of finding better solutions in the future. Thank you so much Dr. Wills for all the hard work you are doing to help improve the lives of people with Lyme disease!

Show notes

G. Magnotta Research Lab

In this episode, Sarah hears from Alexis Chesney, a naturopathic physician in Vermont who specializes in Lyme disease and other tick-borne illnesses. She is also author of the book “Preventing Lyme and Other Tick-Borne Diseases”. Alexis became interested in Lyme disease when a previously healthy friend and colleague developed many mysterious symptoms which turned out to be caused by Lyme disease.

Dr. Chesney describes some of the treatments she has found effective over the years including antibiotics and herbal medicines. She also explains a Herxheimer reaction, a worsening of symptoms, which is caused by toxins that are released when bacteria die off. She describes how she treats patients who are experiencing a Herxheimer reaction, including herbal medicines, diet and hydration. Dr. Chesney examines some of the other tick-borne diseases that she sees in patients including Anaplasmosis, Babesiosis and Bartonellosis. She notes that Bartonellosis can also be caused by flea bites and cat scratches. 

Dr. Chesney shares her experience about some of the herbal treatments available for Lyme disease and other tick-borne infections, touching on the other forms that Lyme bacteria take including the round form and biofilm. She cites a book by Stephen Buhner as well as other resources available for those who are interested in herbal treatments. 

Dr. Chesney tells us why she decided to write a book about preventing Lyme disease, and how living and working in an endemic area made her more passionate about prevention. In her book she provides pictures of different kinds of ticks, so that patients and practitioners are able to correctly identify ticks and understand which diseases they may carry, and describes in detail many ways people can prevent getting a tick bite in the first place.

Dr. Chesney shares with us a bit about her own practice, including collaborations over the years with an herbalist, medical doctors and currently a nurse practitioner. She points to the different roles practitioners have in a patient’s care, including primary care physicians and specialists such as neurologists and cardiologists. Finally she reiterates the importance of prevention and of adequate early treatment, to prevent the chronic symptoms of Lyme disease. Thank you Dr. Chesney for sharing your experience and expertise with us!

Dr. Alexis Chesney

Buhner Healing Lyme Q & A

Blue Crow Botanicals

Show notes

In this week’s podcast, Sarah speaks with Dr. Thomas Moorcroft, a physician from Connecticut who specializes in Lyme disease and Lyme-related infections. He explains what co-infections are and differentiates between infections that are contracted from a tick bite, and concurrent infections that people with Lyme disease may experience. During the 2020 International Lyme and Associated Diseases Society (ILADS) conference, he presented several cases of known tick bites in which individuals tested positive for 3-5 different pathogens. He explains the implications of having more than one infection on disease expression and test accuracy. 

Dr. Moorcroft talks about Bartonella, a co-infection of Lyme disease that can be transmitted not only from ticks, but also from fleas, lice and bites or scratches from cats - hence its other name “Cat scratch disease”. He explains some of the symptoms of Bartonella, including sudden behaviour changes in groups of children after a lice infection has gone through their classroom. Beyond some of the unusual symptoms of Bartonella infection such as foot pain and muscle fasciculations, Dr. Moorcroft points out the often debilitating cognitive effects of the disease. He gives some pointers on clinical signs helpful in the diagnosis of Bartonella, including characteristics of skin changes that occur due to the infection.

Finally, Dr. Moorcroft explains a mentorship program through ILADS, in which physicians, often in Lyme endemic areas, share their clinical knowledge and time with physicians who want to learn more about how to treat Lyme disease and co-infections. He also touches on some of the emerging research that was shared during the ILADS conference, including research showing persistent infection and mental health effects of Lyme disease.

Show notes and resources

Physician Training Program

Grants for healthcare professionals

In this episode Sarah talks about the effects of Lyme disease on the brain with Dr. Shea, a senior staff psychologist, professor and President of Neuropsychological Evaluation and Treatment Services in New York City and Boston. Dr. Shea starts off by explaining many of the effects that Lyme disease has on the brain including the ability to process information, changes in memory, multitasking and high level reasoning. He also explains the importance of understanding the effects on the brain and mental health in terms of what is going on physically to cause these changes. He uses neuropsychological evaluation to measure changes in a person’s cognitive, emotional and behavioural function as a result of Lyme disease. Dr. Shea also notes that results of imaging tools such as a SPECT scan often reflect findings in neuropsychological testing in patients.

We are introduced to the concept of psychoeducation: educating families, teachers, and employers to better support Lyme patients at home, in school and in returning back to work. Dr. Shea gives a few examples of how students can be supported in their learning. He talks about the added social burden that pediatric and adolescent patients experience within their peer groups, and the implications for those patients. Dr. Shea also touches on the challenge that people with dark skin have in getting a diagnosis of Lyme disease in part due to the different appearance of bites and rashes on darker skin tones.

Dr. Shea describes the preceptorship program for physicians through ILADEF, where they are mentored by physicians with many years of experience treating patients with Lyme disease. These physicians (who have treated many Lyme disease patients) have gained a wealth of knowledge and clinical experience that they are able to share. He leaves us with a reminder that much more research is needed in the area of Lyme disease and other tick-borne illnesses.

Show notes with Dr. Leo Shea

Physician training program

Grants for healthcare professionalsFunding available for physicians to attend the ILADS conference

Grants for healthcare professionals

In this episode, Sarah speaks with another champion for Canadians living with Lyme, Green MP Elizabeth May. She describes how she first learned about the severity of Lyme disease when speaking to a woman from Pictou, Nova Scotia who required a wheelchair for mobility. After moving to British Columbia, Elizabeth met others who were experiencing life-altering illness due to the tick-borne diseases. She was frustrated to learn that these patients were dismissed and told there was no Lyme disease where they lived. Elizabeth was determined to develop a Private Member’s Bill to address Lyme disease in Canada after meeting so many people who were struggling to regain their health and find treatment for Lyme disease within our borders.

Private Member’s Bill C-442 , An Act Respecting a Federal Framework on Lyme Disease, passed unanimously through the House of Commons in June, 2014 and the Senate in December, 2014. Bill C-442 was the impetus for the Conference to Develop a Federal Framework on Lyme Disease, which was hosted in May of 2016. This conference brought together patients, family members, advocates, physicians, researchers, public health officials and Lyme disease experts with the intention of creating a federal Lyme disease strategy. As a result of the Conference, 4 million dollars were set aside for Lyme disease research in Canada. Elizabeth explains that, although it was her intention to help people who have become chronically ill with Lyme disease, much of that grant money hasn’t gone in the intended direction.

Elizabeth outlines the need for physicians to become better educated about Lyme disease, so that when patients come in with symptoms of Lyme disease they can start treatment right away, avoiding further health effects from the disease. She points out that when patients cannot access the healthcare they require in Canada, they often will travel to the United States to get it there. With the expansion of ticks in Canada due to climate change, Elizabeth points out that unless needed changes take place, the problem is only going to get worse.

Elizabeth would like to see a change in attitude regarding Lyme disease, along with updated education about Lyme disease, including looking at what other countries may be doing to address the disease. She would also like to see further public health changes in response to Bill C442. She points out that there are many MP’s that are also passionate about this issue due to the overwhelming number of their constituents that come to them suffering with Lyme disease and unable to get the treatment they need. Finally, Elizabeth leaves us with a vision for the future where there is better awareness, prevention, diagnosis, treatment and breakthroughs in research that will get people out of wheelchairs and back to their full life. 

Show notes with Elizabeth May

Private Member's Bill C-442

Conference to Develop a Federal Framework on Lyme Disease

Grants for healthcare professionalsFunding available for physicians to attend the ILADS conference

Grants for healthcare professionals

In today’s episode, Sarah speaks with veterinarian Dr. Joe Bloom to find out more about Lyme disease and other tick-borne illnesses, and how they could affect our pets. Dr. Bloom works in an endemic area of the United States and sees many dogs with Lyme disease in his practice, explaining signs and symptoms that dogs might experience. He also describes the different kinds of tests he uses to diagnose Lyme and other tick-borne diseases in dogs. 

Did you know that some dogs can have Lyme disease but not show symptoms? Dr. Bloom explains how further testing can help determine how the Lyme bacteria is affecting your dog in ways that may not be visible.

Dr. Bloom mentions some of the medications currently available to repel and kill ticks on pets. He also gives his recommendation for tick removal and follow up when a tick is found embedded on your pet, highlighting areas that ticks are more likely to be found. Finally, Dr. Bloom points out that tick bites can occur during the winter, especially during warmer spells when ticks become active. Thank you Dr. Bloom for showing us how to keep our pets safe in the outdoors!

Show notes with veterinarian, Dr. Joe Bloom

Grants for healthcare professionalsFunding available for physicians to attend the ILADS conference

Grants for healthcare professionals

In this episode of Looking at Lyme, Sarah speaks with Internal Medicine Specialist and Canadian Lyme expert, Dr. Ralph Hawkins. Dr. Hawkins has been treating Lyme patients in Canada for many years, gaining a wealth of knowledge about the disease. He recounts his introduction to the shortcomings of Lyme disease testing in Canada while treating a patient with a history of multiple previous tick bites, many common symptoms of Lyme disease, but a negative Canadian Lyme test. Dr. Hawkins had the patient’s blood tested at a University Lab in New York, revealing test band patterns consistent with Lyme disease. He referred this patient to Infectious Diseases colleagues for treatment, but quickly found out that the diagnosis of late stage Lyme disease is not generally recognized by the Infectious Diseases community. He was advised to not only drop this case, but to avoid other similar cases. The recommendation to avoid such patients sparked Dr. Hawkins’ curiosity and interest, inspiring him to dive deeply into the research and history of Lyme disease. 

Dr. Hawkins walks us through the current testing protocols for Lyme disease in Canada, explaining why some patients with Lyme disease receive a negative test result. He explains the difference between current testing in Canada and tests done in other parts of the world, highlighting a test done in Germany that he often relies on when diagnosing patients, and touching on the approval process for such tests by Health Canada. Without better testing, Canadians with Lyme disease continue to fall through the cracks of the healthcare system. Dr. Hawkins refers to a recent analysis of Lyme diagnosis in Canada in which researchers speculate that in some areas, two thirds of Lyme cases go unreported. With this in mind he points out that, in light of the severity of untreated Lyme disease, a trial period of treatment for Lyme disease would be valid for certain patients with negative Canadian serology. Thank you Dr. Hawkins for walking with us down the bumpy road of Lyme disease testing and treatment in Canada!

Article by Health Canada researchers regarding under-reporting of Lyme disease in Canada

Article by Ralph Hawkins and Vett Lloyd regarding under-detection of Lyme disease in Canada (PDF)

Funding available for physicians to attend the ILADS conference

Grants for healthcare professionals

Show notes and additional resources

In this episode, Sarah interviews an Infectious Disease Physician who has treated Lyme patients in the US state where Lyme disease was first identified - Connecticut. Dr. Sam Donta has gained a wealth of knowledge and expertise treating Lyme patients for almost 40 years. As a result of his expertise, he was appointed as one of 14 members of the Tick-Borne Disease Working Group, established by the US Congress in 2016. 

Dr. Sam Donta emphasizes the importance of early treatment for Lyme disease, noting that as time passes, the disease becomes much more difficult to treat. He discusses some of the challenges with diagnosing the disease in the absence of a typical bullseye rash. Due to limitations of the current testing protocol, patients can have a negative Lyme disease test but still have the disease. Dr. Donta emphasizes the importance of doing an in-depth patient history in order to make a clinical diagnosis and shares some of the insights he has gained through decades of treating Lyme patients. He cautions that stopping treatment before patients are fully recovered may lead to problems later on. 

Finally, Dr. Donta looks to the future, pointing out the need for more research to improve testing and guide treatment. Thank you Dr. Donta for spending time with us and sharing your expertise on Lyme disease!

Funding available for physicians to attend the ILADS conference

Grants for healthcare professionals

Show notes and additional resources

In today’s podcast, we start to explore Lyme disease in children. Sarah welcomes her father, Dr. Ted Cormode, to the podcast. He understands Lyme disease both as a pediatrician and as a parent supporting and advocating for his child. Dr. Cormode talks about his experience as a parent when Sarah first became ill. In medical school, he did not learn about Lyme disease so he spent the next years digging deeper into medical research.

Dr. Cormode walks us through some of the unique challenges of understanding Lyme disease in children. He describes an interesting case study of a child who became ill following a camping trip. The child had not received a diagnosis or treatment for Lyme disease, but her symptoms cleared up after being given antibiotics after the surgical removal of her tonsils. When the short course of antibiotics was completed, the child’s symptoms returned. Another course of antibiotic treatment was ordered and Dr. Cormode is happy to report that many years later, the patient has remained in good health. 

For children and adults alike, knowing a patient over time can help a family physician determine when symptoms are out of the ordinary for that individual. Dr. Cormode also discusses three case studies recently published in the Canadian Medical Association Journal in which three patients with signs and symptoms of Lyme disease did not receive an early diagnosis and developed serious complications. 

Finally Dr. Cormode gives us a few tips on how to prevent Lyme disease to keep ourselves and our children safe in the outdoors. Thanks for sharing your insights with us Dr. Cormode!

Funding available for physicians to attend the ILADS conference

Grants for healthcare professionals

Show notes

In this episode, Sarah speaks with Dr. Bruce Hoffman, a Functional Medicine physician from Calgary. Dr. Hoffman describes Functional Medicine and explains how numerous factors influence a patient’s health. He highlights the importance of taking an in-depth patient history to understand and document symptoms. This helps determine whether a patient might have other underlying health concerns that may need to be addressed. 

Dr. Hoffman explains that there are several approaches to treating Lyme disease. He gives us insight into why there is such a variety of symptoms amongst patients with Lyme disease and describes how symptoms often wax and wane over time. 

Did you know that many Lyme patients experience a phenomenon called mast cell activation syndrome? Dr. Hoffman explores some of the triggers for mast cell activation and emphasizes the importance of looking out for this syndrome especially in patients with chronic illness. He also explains the importance of addressing other underlying issues.

Funding available for physicians to attend ILADS Conference

Grants for healthcare professionals

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