37. Navigating Lyme disease with scientist and author Dr. Shelley Ball

Episode 37 cover image: a house on a rocky shore in Antarctica, with a snowy mountain in the background.

This week Sarah is joined by Dr. Shelley Ball, an evolutionary ecologist, fellow of the Royal Canadian Geographical Society, and Founder and President of Biosphere Environmental Education, a social enterprise focused on connecting people with nature. She was also a founding member of the inaugural Homeward Bound Women In Science Leadership Expedition to Antarctica. In this episode, Sarah and Dr. Ball discuss her newly-published book: Lyme Disease, Ticks and You: A Guide To Navigating Tick Bites, Lyme Disease And Other Tick-borne Infections

Dr. Ball became involved with Lyme disease as a person suffering from Lyme and other tick-borne illnesses. Dr. Ball did as much research into Lyme as she could…she is a former research scientist, university professor and self-proclaimed “knowledge sponge.” Self-education and advocacy is vital due to the current lack of support from the public health care system for Lyme disease patients.

“I think my way of dealing with problems is just to gain as much knowledge on a topic as possible and what I have learned the unfortunate and very hard way with Lyme is that you need to self-educate and do your research because we don’t get the help from our public health care system that we need. So you very much have to self-educate and become a very vocal advocate for your care.”

Dr. Shelley Ball

Understanding the science of Lyme

Dr. Ball’s new book gives the Canadian scientific perspective on Lyme disease. She explains that, given her experience with Lyme disease and two other tick-borne illnesses, she wanted to help others navigate this disease. Although she is not a Lyme researcher, Dr. Ball has the ability to read the peer-reviewed science that is out there with a critical eye and learn as much as she possibly can, and translate it for others. 

Dr. Ball tells Sarah that she had to fight for a Lyme diagnosis after getting an initial negative Lyme disease test. She had to rely on her research into peer-reviewed scholarly articles about Lyme in order to show her GP why she could have Lyme disease with a negative test, and why Lyme could not be ruled out as a differential diagnosis. In this way, it can feel like science and medicine are speaking different languages when it comes to Lyme disease…so much can be lost in translation.

As a science communicator, Dr. Ball says she is focused on taking complicated science — like the scientific research into Lyme disease — and distilling it down in a way that the general public can understand. While there are many great books about Lyme, Dr. Ball explains that some of them can be quite technical and, for those who are having trouble with short-term memory and processing information, it can be tough to comprehend the information. She wanted to use her science background to help others navigate Lyme. Her goal with the book was to create a primer of the fundamentals that people with Lyme need to know to help and advocate for themselves.

“As many, if not most of us, with Lyme disease and other tick-borne illnesses go through, it’s other Lyme sufferers, or those close to Lyme sufferers, who become your biggest support and biggest help and I’ve had massive support from other people and for me the book is kind of a way to pay it forward.”

Dr. Shelley Ball

The taxonomy of Borrelia

In her book, Dr. Ball discusses the genetic diversity of Borrelia, which can be linked to why testing is not yet accurate at detecting Lyme in Canada. Dr. Ball notes that with the movement of migratory birds and people travelling around the world, testing for just certain species and strains will mean missing a large part of the picture. She also emphasizes the point that scientists still don’t know about the genetic diversity of Borrelia at the species and strain levels.

Peer-reviewed science

The bibliography of Lyme Disease, Ticks and You is full of peer-reviewed articles. Dr. Ball says that one of the papers that is the most important to her is a meta-analysis that evaluated the efficacy of two-tiered testing for Lyme disease. It found that the two-tiered tests for Lyme here in Canada only have a 54% chance of detecting Lyme disease. 

She reiterates that these antibody tests were designed as surveillance tests, not diagnostic tests, and that they shouldn’t be relied upon by physicians. In Canada, the insensitive ELISA test is used as the first or two tiers of testing…if it is negative (and it frequently is because you have not produced antibodies yet), then you cannot get the second western blot test. If you recall our interview with Dr. Ralph Hawkins in episode 7, he described the two-tiered test using a metaphor about security screening at airports. Physicians need better diagnostic tests to support patient care…and patients require better care and early diagnosis, either clinical or ideally supported by improved laboratory testing.

 “I think it just sort of underpins a really important message which is that these antibody tests were never designed as diagnostic tests, they were surveillance tests, so the fact that doctors rely on them far far too much, you know we should be relying on a clinical diagnosis.”

Dr. Shelley Ball

Dr. Ball says she also recently read a paper that found that the iconic bullseye rash associated with Lyme was only present in about 9% of those with the disease, although doctors and public health officials continue to focus on it as a key indicator.

Sarah reminds listeners that the Canadian Lyme Disease Foundation is offering grants to physicians who want to get more training in Lyme disease and other tick-borne diseases. Dr. Betty Maloney was on the podcast in Season 1 and she discussed the LymeCME program, a continuing medical education for physicians.

Dr. Ball reiterates that while there has been an increase in peer-reviewed science about Lyme and tick-borne diseases, there is still a disconnect between how the medical profession views Lyme and what the science proves.

“I think one of the biggest frustrations for me is that the body of peer-reviewed science for Lyme and tick-borne diseases has literally exploded in recent years, and yet the way that our medical profession in Canada and I think in general in North America, treats Lyme disease is they basically ignore all of that science. We really need to force the issue to say ‘Look, it’s time to play catchup, it’s time to utilize the current information so that we keep people safe’ because a lot of the information that doctors and public health will tell you, unfortunately lead to a lack of a diagnosis which means that critical window for treatment right after a bite is missed.”

Dr. Shelley Ball

Advocating for yourself

Sarah tells listeners to advocate for themselves and remember that they can ask their doctors to get Lyme disease training. Having a great relationship with your GP is important, as is being able to challenge them in a respectful way.

Sarah adds that it also never hurts to get a second opinion. After a year of ongoing illness, Sarah ended up going to the US to get diagnosed and receive treatment…she was so relieved to finally see a specialized doctor who understood Lyme disease and had treated numerous cases. For Dr. Ball, she was ready to go to the US but was able to get into a private clinic in Ontario. She and her doctor are able to have conversations about Lyme and she is able to ask questions.

Sarah notes that there is a new project in Ontario called TickMD, a virtual healthcare program where you can book an appointment with a physician who is knowledgeable about tick-borne diseases.

Checking for ticks

When it comes to checking for ticks, Dr. Ball says we must develop new habits. She lives in an endemic area and from the beginning of March to December, she checks for ticks daily. When learning about Lyme disease, some people become scared to venture outside again, but there are countless physical and mental health benefits to spending time in nature and it is important to learn how to keep yourself safe. For Dr. Ball, the goal is finding easy solutions and habits people can adopt, like the use of insect repellent and regularly checking for ticks. 

She explains that she does tick checks after being outside, before bed, and even when she wakes up in the morning for anything she may have missed. 

What does Dr. Ball hope readers will get from her book? She says she would like readers to understand the science of Lyme disease and tick-borne illnesses so that they know how to protect and advocate for themselves. She also wants people to understand the truth of Lyme, with so much outdated information being shared by doctors and public health. In sharing her personal story, she hopes readers will see that those with chronic Lyme face discimination in the healthcare system here in Canada.

“There’s a lot of wonderful people who have been advocating for Lyme patients for many years and have made great inroads, but I think it’s time now that the general public understand what’s going on and to help us advocate for change in a positive and collaborative way.”

Dr. Shelley Ball

Thank you so much Dr. Ball for your expertise, research, and for this fabulous book! 

This is our final episode for season 2 of Looking at Lyme. Have a great summer and remember to stay safe!

Related resources

Episode 37 cover image: a house on a rocky shore in Antarctica, with a snowy mountain in the background.

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