Bay Area Lyme’s November 2021 Speaker Series Event: Bringing Hope and Support to Lyme Patients in San Diego

BAL Happenings Series

Why is the human immune system so complicated? Why are Lyme and tick-borne diseases so challenging for medical scientists to understand and for doctors to treat? And what is happening in the world of Lyme disease research that may offer hope to patients suffering from the effects of Lyme and TBDs on their continually assaulted immune systems?

On November 3, Bay Area Lyme Foundation and Sanford Burnham Prebys Medical Discovery Institute jointly hosted an audience of physicians, scientists, patients, supporting family members, and medical providers in La Jolla, CA, to hear a panel of distinguished speakers address the subject of how the human immune system responds to the bacterial or viral assault of a tick-borne infection.

The San Diego event was part of Bay Area Lyme Foundation’s ongoing Distinguished Speaker Series. The Speaker Series format brings together a panel of distinguished individuals, typically including a researcher, a physician, and a Lyme patient advocate. By giving varied perspectives on topics relevant to Lyme and tick-borne diseases (TBDs), Bay Area Lyme provides a platform for the discussion of new scientific discoveries and other developments relevant to Lyme. The series also fosters community-building for patients seeking answers to the challenges of this debilitating disease.

Part of this session’s discussion explored the frustration experienced by countless Lyme patients that most medical providers and physicians are so poorly educated regarding Lyme and TBDs. “They don’t test for all types of TBDs, don’t agree on treatments, aren’t trained to recognize or treat heart problems caused by TBDs, and over-prescribe powerful immune suppressants which can be deadly for TBD patients,” criticized David Haney, PhD, biochemist, patient advocate and panelist. “San Diego physicians are under the mistaken impression that there is no Lyme disease in California, but it has been established in the state since the 1970s. People also travel, and a tick-borne infection is more than just Borrelia burgdorferi. This has been proven in multiple studies,” he added. “Academic studies show that Babesia duncani and several species of tick-borne Borrelia are more prevalent in the West than the East.”

“Traditional healthcare needs to learn to diagnose and treat tick-borne diseases,“

– David Haney, PhD

This lack of understanding and experience had tragic consequences for David Haney’s family. His son, Sean, passed away this year due to heart complications from undiagnosed TBDs. Sean was misdiagnosed for years, which is all-too common for those with Lyme and TBDs. David appealed to the practitioners in the audience: “Be on the lookout for minor cardiac issues in Lyme disease. They can lead to a deadly problem for someone with Lyme.” In summation, David’s plea was simple and to the point: “Traditional healthcare needs to learn that tick-borne diseases exist in CA and how to diagnose and treat tick-borne diseases.”

Focusing the medical science community’s attention on Lyme and TBDs, and developing accurate diagnostics and new, effective therapeutics for providers, has been a major multi-year effort of intense concentration and investment for Bay Area Lyme Foundation. Liz Horn, PhD, MBI, from the Lyme Disease Biobank was able to provide some rays of hope from the medical research community. Liz has been working in Lyme disease since 2013 and was part of the team that launched the Lyme Disease Biobank (LDB) in 2014. LDB was created to provide much-needed patient samples to researchers studying Lyme disease and other TBDs.

“We want people in the San Diego area and across the US to know that we are able to accept tissue donations from surgeries. We are also expanding our recruitment efforts for persistent/chronic Lyme in San Diego,”

– Liz Horn, PhD, MBI, Lyme Disease Biobank

“When we launched the Biobank, researchers were always telling us that they wanted to study Lyme and TBDs, but they couldn’t get well-characterized samples to use in their research. Since we founded the LDB, we’ve enrolled more than 1,000 participants from eight collection sites across the country, including one here in San Diego. Blood and urine sample donations support 70 research projects in both academia and industry, helping the development of better diagnostics and therapeutics,” Liz said. “And we’re excited to share that our Tissue Collection Program in partnership with the National Disease Research Interchange (NDRI) – launched in 2018 to help us understand how Lyme bacteria invade tissues and organs – sent the first tissue samples to researchers in 2021. We want people in the San Diego area and across the US to know that we can accept tissue donations from surgeries. We are also expanding our recruitment efforts for persistent/chronic Lyme in San Diego. By collecting samples from people with Lyme in San Diego, we hope to learn more about Lyme disease in California. And yes, there is Lyme disease in California,” she added wryly.

To add to the encouraging news from Liz regarding the number of research projects LDB now supports, Victoria Blaho, PhD, Assistant Professor, Sanford Burnham Prebys, Immunity and Pathogenesis Program, presented important findings from her past and current research. Her studies started by examining the effect of NSAIDs (such as ibuprofen like Advil, Motrin, etc.) on the development and resolution of experimental Lyme disease in mouse models.

Victoria explained that the logical hypothesis was that as NSAIDs were used to prevent disease progression in autoimmune (rheumatoid) arthritis, they would also be beneficial in infectious arthritis caused by Borrelia burgdorferi (Lyme) infection. “What we found instead was that, depending on the protein target of the NSAID, they didn’t worsen disease, but they prolonged the duration of the inflammation in mouse ankle joints (prevented resolution), or they worsened the arthritis AND altered the Borrelia-specific antibody response. So, hypothetically,  if someone is diagnosed with autoimmune joint inflammation but actually has Lyme arthritis, taking an NSAID could do more harm than good,” Victoria explained.

“Many immunologists are now only familiar with autoimmune disease or cancer and are not used to thinking about separate independent organisms trying to set up camp inside of us. It’s a totally different way of thinking about things,”

– Victoria Blaho, PhD, Assistant Professor, Sanford Burnham Prebys, Immunity and Pathogenesis Program

As Victoria walked the audience through her slide deck, she segued briefly into the challenge of being trained in both immunology and infectious diseases. “Many immunologists are now only familiar with autoimmune disease or cancer and are not used to thinking about separate independent organisms trying to set up camp inside of us,” and she continued to explain why this is a deficit. “With autoimmune disease your goal is to completely stop whatever that response is. With cancer, you’re trying to turn on a very specific, strong response while at the same time trying to impair cell replication. And in infectious disease, you’re trying to turn on just enough of a response to be better than the bugs,” she added. “Sometimes we get the right balance, sometimes our bodies overreact and cause too much damage to ourselves while going after the bugs. But why, and is there any way to know who will react that way and who won’t? And is there any way to reverse it?”

Serendipitously, Victoria’s lab is getting ready to submit a request to the Lyme Disease Biobank for samples from patients with confirmed persistent Lyme disease. Both she and Liz are excited about her findings and the potential for Bay Area Lyme to further support Victoria’s investigations into how and why the human immune system may respond in unexpected ways when it is battling Lyme or other TBDs.

Bay Area Lyme Foundation’s mission is to make Lyme disease easy to diagnose and simple to cure. As the foundation moves into its tenth year, one thing can now be said with confidence: the foundation and extensive research community it supports is gradually and purposefully closing in on the goal. Thanks to turning on the faucet of patient samples through the Lyme Disease Biobank, and BAL’s funding of many research projects around the country, it seems that the critical inflection point may be here. Doctors and researchers sense this too—the tantalizing possibility that solid progress is finally being made. Daniel Slater, MD, a primary care physician and professor of family medicine and public health at UC San Diego Health was in the audience. He stated succinctly: “The breadth and depth of information coming out of basic research regarding TBDs is astonishing and every clinician in every field of health can’t learn about this soon enough.”

“The breadth and depth of information coming out of basic research regarding TBDs is astonishing and every clinician in every field of health can’t learn about this soon enough,”

– Daniel Slater, MD, Primary Care Physician, Professor of Family Medicine and Public Health, UC San Diego Health

Rob Reed, R&D Director, Quidel, a local San Diego company that develops diagnostic products and an underwriter of the evening’s event, echoed Dr. Slater’s observation. “From my standpoint I am happy to see that Bay Area Lyme Foundation is continuing to beat the drum of Lyme disease awareness, outreach and research as we emerge hopefully from the Covid pandemic.”

Let’s look ahead to 2022 and Bay Area Lyme’s tenth year. With these encouraging signs we may make the breakthroughs in diagnostics and therapeutics that all Lyme patients need to restore their health, rebuild their immune systems, and finally be able to move forward with their lives.

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This blog is part of the Bay Area Lyme Happenings series sharing information about BAL’s events and gatherings. For alerts about future Speaker Series events, please email  speakerseries@bayarealyme.org To support Bay Area Lyme’s mission, please click here.