In this episode, Sarah speaks with Rossana Magnotta, who established the G. Magnotta Foundation in honour of her late husband, Gabe, who passed away after a courageous battle with Lyme disease. The G. Magnotta Foundation leads scientific research into Lyme disease at the University of Guelph in Ontario.
Rossana tells Sarah that Gabe was an avid outdoorsman who spent much of his life camping, hunting, and fishing. When he developed symptoms including balance issues, eye problems, and memory loss, he was tested for everything from Alzheimer’s to ALS, before finally being tested for Lyme disease. However, the Canadian Lyme tests came back negative.
This experience echoes the stories of so many other Lyme patients who are shuffled between different doctors and specialists, with no answers. Rossana emphasizes how difficult this experience can be for families as well.
“You have your loved one there suffering and you know that they’re not well…and you know them before it, and you know them when they’re suffering, and you just know that there is something wrong.”Rossana Magnotta
Even when Rossana insisted to her husband’s doctors that Gabe was an avid outdoorsman and that she believed he had Lyme disease, she was dismissed because of the negative tests. When Gabe’s blood was sent to the US for testing, the results were positive. But at that point, they had lost precious time and he never recovered.
Having worked in hematology, microbiology, and biochemistry, Rossana was able to investigate Canada’s ELISA test (a two-tiered serological test), the apparent “gold standard” test for Lyme disease. Rossana explains that when she dug into it, she realized it was faulty, as it only measures a narrow immune response rather than identifying whether the person has an active infection or not and whether Borrelia is the causative agent of the illness.
“When I got down to the bottom of it, I was horrified to find that the Canadian tests didn’t work at all. And sadly Gabe didn’t get even a positive test until we took his blood and sent it outside of the country, like many Lyme patients end up doing today…and we had lost so much time; so much precious time that Gabe ended up paying the ultimate price.”Rossana Magnotta
The test is still not a reliable indicator for doctors. With determination, Rossana set out to develop a reliable and trustworthy test to support doctors in diagnosis and consequently early treatment. From this painful experience, the G. Magnotta Foundation was born.
The G. Magnotta Foundation
Rossana started the foundation in 2012, and it became integrated into the University of Guelph as the G. Magnotta Research Lab in 2017, with $1.4 million in donations she had collected. The lab is led by Dr. Melanie Wills, who recently published an innovative paper identifying the segments of blood where Borrelia can be found. The research focused on detecting the Borrelia bacteria itself, not the immune response. The problem with current testing is that it is a two-tiered serological test, meaning that the serum is used for diagnostic testing to look for antibodies which demonstrate a host immune response. If the Borrelia bacteria is not in the serum, you won’t find it. Dr. Wills joined Sarah for an episode of Looking at Lyme season 1.
“I realized at that point that we have to do something about this test. This test is the indicator for doctors. Doctors need to have something reliable. Reliable so they can say ‘Yes with no doubt this person has Lyme disease’ and ‘Yes we’re going to treat this person like ABC”, because we’re going to learn a lot about this organism in the process of understanding how to identify it properly in a body.”Rossana Magnotta
Rossana explains that the foundation’s goal is to fuel the biomedical research that will provide answers to the most challenging Lyme questions that doctors and patients face today, from creating a reliable test to understanding symptoms and treatment. The ultimate goal and vision for the foundation is to create a comprehensive centre for critical care and research that would be a world-class facility for patient care, research, and medical education.
Rossana also explains that the lab is researching the correlation between the experiences of chronic COVID-19 patients (“long haulers”) and chronic Lyme disease patients, and the researchers are working on documenting this correlation.
Supporting the G. Magnotta Foundation
Monetary funding for the lab is important to be able to compensate researchers and attain high-end equipment. How can listeners support the foundation? Rossana says they are always collecting donations. A portion of every bottle from their Venture series of wine goes to support the foundation too and can be purchased through Magnotta Winery.
The foundation also sells tick removal kits, which Rossana points out are particularly important now that it’s springtime and people are spending more time outdoors. The kits are small and can be put in a backpack, car, or cycling bag, and can be used to carefully remove ticks to reduce transmission of Lyme. They can also make great gifts for loved ones. All of the proceeds from the tick removal kits go to the foundation.
“We need to be very cognizant of this silent pandemic that’s going on and that’s Lyme disease. And more people are spending time outdoors because you can’t stay indoors anymore too much and you want some fresh air, so you’re doing those hikes, you’re in the backyard and so forth, so the tick removal kit is so important.”Rossana Magnotta
Lyme Disease Awareness Month
With May being Lyme Disease Awareness Month, listeners can follow the foundation’s social media for promotions, fundraising, and Lyme awareness tips. The foundation is hoping to raise $5,000 this month to continue their innovative research and work towards their goal of creating a world-class centre devoted to patient care, research and medical education.
“Science is going to be our weapon, everyone. We really need to understand this organism very well. It has been so overlooked. It’s so misunderstood, it’s so controversial, and it’s underfunded.”Rossana Magnotta
Thank you so much to Rossana for your leadership and tenacity in fighting Lyme disease. “Never back down!”