On this week’s Love, Hope, Lyme podcast, I asked Global Lyme Alliance CEO and past chief scientific officer Dr. Tim Sellati to give us an update on the state of Lyme disease around the globe, new diagnostic and treatment initiatives they are supporting, and the rise of Alpha-gal syndrome.
When I was doing the research for my popular book “Love, Hope, Lyme: What Family Members, Partners, and Friends Who Love a Chronic Lyme Survivor Need to Know,” I was unaware of how much hard work is being done at universities and research institutions to find better testing and treatment capabilities for tick-borne diseases.
The work GLA is doing to help Lyme disease survivors and their families is remarkable.
I was pleased to feature Ms. MacNeill and Dr. Sellati on the latest episode of my “Love, Hope, Lyme” podcast.
The Growing Threat of Lyme Disease
The prevalence of Lyme disease is rapidly increasing, a trend exacerbated by factors such as climate change and increased domestic and international travel. “The disease is rapidly increasing in its prevalence and spreading in ways that we just haven’t seen before,” said Ms. MacNeill.
She highlighted that Lyme disease can often be misdiagnosed due to its ability to mimic other illnesses, earning it the moniker “the great mimic.” MacNeill emphasized, “The estimation is about 500,000 new cases a year, but everybody knows that that is way short of the actual number.”
The increasing tick population and their extended activity periods contribute to the rising number of cases. Ticks are not experiencing the deep freezes that once kept their numbers in check. “Ticks' prevalence is increasing. They stay awake longer throughout the year. We’re not getting the deep freeze in the northeast that we’re used to,” MacNeill explained.
In addition to Lyme disease, other tick-borne illnesses, such as coinfections like bartonella and those caused by the Lone Star tick, pose significant health risks. Sellati explained the dangers of red meat allergy, which can be triggered by a bite from the Lone Star tick. This condition, also known as Alpha-gal syndrome, causes severe allergic reactions to red meat. “With successive exposure to red meat, you can get a more and more severe allergic reaction,” Sellati warned.
The Critical Need for Direct Diagnostics
A significant challenge in managing Lyme disease is the current reliance on indirect diagnostic methods, which detect antibodies rather than the Lyme bacteria itself. This approach can delay diagnosis, as antibody production takes time. Sellati underscored the necessity of direct diagnostic tests, which would identify the presence of the bacteria directly. “We need to look for the Lyme bacteria itself, either the proteins or the DNA or the RNA or other molecules that make up the Lyme bacteria and use that as a basis for early detection,” he asserted.
The development of direct diagnostic tests is crucial for both timely diagnosis and effective treatment. As Sellati elaborated, “If you go looking for the antibodies before your body has actually made them, you’re going to have a negative test result, which doesn’t mean you don’t have Lyme disease—you just looked too early for the indirect evidence for it.”
Research and Innovation in Lyme Disease
Advancing Lyme disease research involves supporting leading scientists and innovative projects worldwide. “We were born a 501(c)(3) to start raising money to fund research and help patients that are sick today,” MacNeill explained. “The organization is dedicated to fostering basic research, developing diagnostics, and exploring new treatment options.
One of the most promising areas of research is the work of Dr. Brandon Jutras, who is developing a direct diagnostic test for Lyme disease at Northwestern University. His innovative approach involves detecting a specific structural protein of the Lyme bacteria. “He can actually detect Lyme bacterial protein in blood and urine. You don’t have to wait for the patient’s immune system to develop antibodies,” Sellati explained. This research not only aims to improve diagnostics but also explores strategies to eliminate the inflammatory triggers causing persistent symptoms in chronic Lyme patients.
Despite significant advancements, the battle against Lyme disease is far from over. One of the greatest challenges remains the development of effective treatments, particularly for chronic Lyme disease. Sellati emphasized the need for innovative treatment options and clinical trials to validate these approaches. “The overarching goal of our three-year research strategic plan is to drive discovery of effective treatments for chronic Lyme patients,” he stated.
Moreover, the lack of direct diagnostic tests hampers clinical trials and the approval of new treatments. MacNeill pointed out, “With that very exciting project, they run into a challenge that all prospective biotech and researchers run into when they’re going to host a human clinical trial here: if you don’t have that direct diagnostic test to be able to know for sure someone who’s had maybe a long-term antibody reaction to the infection or they have an acute new case, you can’t discern what’s really happening.”
A Call to Action
The fight against Lyme disease requires a multifaceted approach, involving research, patient support, and public awareness. Listening to the patient’s voice is essential in driving the development of effective treatments and strategies. “What drove the development of the research strategic plan was asking the patients, ‘What do you need?’ We’re listening to the patient’s voice,” said Sellati.
As Lyme disease continues to spread, efforts to combat it become increasingly critical. These efforts not only aim to improve the lives of those affected by Lyme disease but also to prevent future cases through better diagnostics, treatments, and public awareness. “We funded that because it had such promise,” MacNeill concluded, highlighting the proactive approach to funding innovative research.
The ongoing battle against Lyme disease involves relentless research, strategic collaboration, and unwavering dedication to find a cure and improve patient outcomes. Through these efforts, the hope is to transform Lyme disease from a formidable threat to a manageable and curable condition.
The research strategy is guided by the needs and voices of Lyme disease patients. Emphasizing basic research to understand the bacteria's mechanisms and interactions with the human immune system is crucial. Sellati noted, “We’re focused on basic research, we’re focused on diagnostics, and when we can make true significant advances in those areas, we start to explore treatment options.”
The organization’s role extends beyond funding research; it acts as a catalyst for collaboration and innovation in essence playing the role of Scientific Cupid. GLA connects researchers and physicians and patients across the spectrum to try and get just the right group of individuals together with diverse skill sets, diverse tools, diverse perspectives on how to solve problems.
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