Written by: Christina P. Kantzavelos
Driven by a desire to create a centralized resource and supportive community for those impacted by Lyme and tick-borne disease, the San Diego Lyme Alliance (SDLA) was formed as an affiliate of the Bay Area Lyme Foundation in 2019. The challenges of navigating Lyme disease are vast and need not be faced alone. So following in the footsteps of past and existing local Lyme support groups, SDLA established three regional “Circle of Support” group meetings in Carlsbad, Scripps Ranch and La Jolla. Creating this safe space for open dialogue enabled Lyme patients, family and caregivers to build meaningful connections, feel supported and stay informed.
In March 2020, life changed abruptly. COVID-19 demonstrated the importance of human communication and connectedness, with a rise in feelings of isolation, depression and anxiety. While the pandemic presented the challenges of isolation, it also provided the opportunity to explore new ways of interacting and building meaningful connections. Quick to adapt to the online virtual world via Zoom, the “Empowerment Circle” (EC) was born in June 2020. Initially facilitated by Mark Guay, Christina P. Kantzavelos and Patricia Cosulich have joined as co-facilitators to round out the EC Team. Over time our group has brought together participants from San Diego and beyond, including San Francisco, the east coast, and even Canada. The pandemic presented an unexpected opportunity to bring people together more effectively, transcending time, geographical separation and physical limitations.
Monica Embers, PhD, Associate Professor of Microbiology and Immunology at Tulane University School of Medicine and Bay Area Lyme Scientific Advisory Board member
Monica Embers, PhD, Associate Professor of Microbiology and Immunology at the Tulane National Primate Research Center and Bay Area Lyme Scientific Advisory Board member discusses xenodiagnosis, Borrelia persistence, and her ongoing research in non-human primates.
Allyshia Gupta, Miss California USA and Bay Area Lyme Ambassador
Miss California USA 2020, Allyshia Gupta, shares her personal story of finding herself through hardship and loss, and the importance of service as a source of strength.
– Wendy Adams, Research Grant Director, Bay Area Lyme Foundation
Bay Area Lyme has a goal to leverage the entrepreneurial spirit and innovation of Silicon Valley in order to catalyze novel projects around the country. Our belief is that the application of cutting-edge technologies will have a dramatic impact on making Lyme disease easy to diagnose and simple to cure. We collaborate with world-class scientists focused on Lyme projects which leverage knowledge from other fields of medicine and research. We also prioritize engagement with the investment and biotech communities so that breakthroughs in the laboratory can be translated more quickly to patients. Since our inception, our scientific research funding priorities have been focused on supporting diagnostic and therapeutic projects.
It is impossible to cure Lyme disease in every case without understanding how to diagnose it accurately. There are many reasons for this disease being difficult to identify—ticks are tiny, the EM skin rash is often misdiagnosed and symptoms overlap with other acute diseases like influenza. Most importantly, the widely used two tier diagnostic testing required for Lyme disease is currently the ELISA and Western Blot, which only detects the immune response (indirect detection) and not the pathogen itself. Because it can take at least 2-4 weeks for the body to generate antibodies, these tests have been shown to miss up to 70% of acute Lyme cases. These tests also do not detect other related Borrelia species, such as Borrelia miyamotoi), and cannot determine when the infection is eradicated.
Wendy Adams, MBA, Bay Area Lyme Advisory Board Member and Research Grant Director
Wendy Adams, MBA, Bay Area Lyme Advisory Board Member and Research Grant Director, discusses Lyme research, Lyme persistence studies, and the reality of Lyme rashes.
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Tara DiMilia, 908-947-0500, tara.dimilia@TMstrat.com
Bay Area Lyme Foundation Announces Call for Entries for the 2021 Emerging Leader Awards
Grant aims to inspire new research toward overcoming the challenges of Lyme disease
PORTOLA VALLEY, Calif., November 17, 2020—Bay Area Lyme Foundation, a leading sponsor of Lyme disease research in the US, is announcing a call for entries for their 2021 Emerging Leader Awards (ELA), which are designed to encourage scientists who embody the future of Lyme disease research leadership in the US. This year, two grants, $250,000, and $100,000 will be awarded. Recipients will be researchers from academia or the private sector in the US. who have not necessarily conducted previous research in tick-borne diseases. All applicants are encouraged to bring learnings from other therapeutic areas to their research projects. Their proposal must have a defined scientific approach and rationale that can advance diagnostics or treatments for Lyme disease. Applications will be accepted through February 15, 2021, at midnight pacific. The full criteria and application for this award can be found here.
“This year has given us all the opportunity to consider the great importance of medical research and the devastation that can arise when a pathogen is not well-understood by the medical and scientific community,” said Wendy Adams, research grant director, Bay Area Lyme Foundation. “We clearly need novel approaches to make Lyme disease easy to diagnose and simple to cure, and we hope these awards offer the support that innovative researchers require.”
Many experts agree that if you are a patient being treated for chronic Lyme disease, but are not getting better, underlying mold toxicity could be at fault. Mold illnesses and Lyme Disease share many symptoms and if all treatments have been exhausted for Lyme with no result, mold could be the hidden offender. According to the book New Paradigms in Lyme Disease Treatment, “mold toxicity causes patients to develop symptoms from Lyme infections and vice versa, and people with weakened immune systems are far more susceptible to sickness from mold…and doctors are just beginning to understand and explore it, and like Lyme disease, many conventional physicians are not even aware of it.”
Many people know that black mold poses a huge threat, but are unfamiliar with other types of mold causing health issues. Mold illness causes extreme inflammation, called chronic inflammatory response syndrome (CIRS) and when coupled with Lyme disease, symptoms such as fever, headache, and fatigue are exacerbated. Often, mold-related allergies are misdiagnosed or worse, many doctors assume the problems are psychosomatic. Because of this, many people are not aware they are suffering from CIRS plus Lyme disease simultaneously.
Richard Horowitz, MD, Bay Area Lyme Advisory Board Member and Director of the Hudson Valley Healing Arts Center
Bay Area Lyme Foundation Advisory Board Member, Richard Horowitz, MD and author of “Why Can’t I Get Better?” speaks about his experience and novel research on Tick-borne Diseases, Fire/Smoke Exposure, Covid19, and Multiple Systemic Infectious Disease Syndrome (MSIDS).
FOR IMMEDIATE RELEASE
Tara DiMilia, 908-947-0500, tara.dimilia@TMstrat.com
Bay Area Lyme Foundation Launches Ticktective™ Podcast
PORTOLA VALLEY, Calif., September 30, 2020 — Bay Area Lyme Foundation, a leading sponsor of Lyme disease research in the US, announces the launch of the Ticktective podcast and video series. Ticktective is a Bay Area Lyme Foundation program designed to investigate the latest scientific knowledge and advances in Lyme and tick-borne diseases. The podcast offers insightful discussion with researchers, physicians, patients, and thought leaders in the field.
“Because the science surrounding tick-borne disease is so complex and there are so many unanswered questions, Ticktective aims to share firsthand perspectives about the challenges of Lyme in ways that will intrigue more scientists, physicians and patients to join our battle towards making Lyme disease easy to diagnose and simple to cure,” said Linda Giampa, executive director, Bay Area Lyme Foundation.
There are more than 400,000 people diagnosed with Lyme disease each year in the US, and millions of Americans live with persistent Lyme disease (PLD) caused by an ongoing bacterial infection. The current “gold standard” diagnostic for Lyme disease misses up to 60% of cases of early stage Lyme disease, and if not treated promptly, Lyme may progress to a debilitating stage, becoming difficult, or impossible, to cure. Bay Area Lyme Foundation has funded over 100 research projects at 37 institutions across the US in a mission to find solutions for these patients.
Dana Parish, Bay Area Lyme Advisory Board Member (Co-author of "Chronic" and SonyATV singer/ songwriter)
Bay Area Lyme Foundation Advisory Board Member, “Chronic” co-author and SonyATV singer/songwriter, Dana Parish, shares her perspective on chronic diseases, autoimmunity, COVID-19, and speaking out in the face of adversity. “Chronic: The Hidden Cause of the Autoimmune Pandemic and How to Get Healthy Again” is available for purchase on Amazon here.