Ticktective with Dana Parish: Brain Bugs: A Neurologist Discusses Lyme, PANS, & PANDAS

Ticktective™ with Dana Parish

Elena Frid, MD

Dr. Elena Frid is a Neurologist and Clinical Neurophysiologist specializing in Infection Induced Autoimmune Disorders. With clinical interests in Autoimmune Neurology, she sees patients with complex cases of Lyme disease + co-infections, PANS/PANDAS, and Autoimmune conditions resulting in various neurological complaints. Using cutting-edge diagnostic tools and clinical expertise, she differentiates between idiopathic and organic causes of various neurological disorders. Her knowledge has been sought by patients from all over the United States, as well as Canada and Europe. Dr. Frid attended a coveted BA/MD program at Robert Wood Johnson Medical School (RWJMS) and went on to North Shore-LIJ Health Care Systems (currently Northwell) where she completed a residency in Neurology and a fellowship in Clinical Neurophysiology.

Principal Investigator, Dr. Felicia Chow, Talks about the New Lyme Clinical Trials Center at UCSF

UCSF Parnassus campus San Francisco

BAL Leading the Way Series

 

“I was seeing more and more patients here at UCSF who hadn’t traveled to Massachusetts, New Jersey, or other places endemic for Lyme, but rather had just been in the California Bay Area or on West Coast trips to places that we don’t consider—at least by the classic maps—as being endemic Lyme areas.”

– Felicia Chow, Associate Professor of Neurology and Medicine at University of California, San Francisco

Felicia Chow, MD

There’s been much excitement in the Lyme community regarding the founding and development of the Lyme Clinical Trials Network since it was first announced. With a $1m seminal grant from Bay Area Lyme Foundation, UCSF joined the Clinical Trials Network to further study and develop better treatments for patients with Lyme and other tick-borne diseases. The Network aims to address the need for high quality, innovative clinical trials to develop evidence-based treatments for patients with persistent Lyme symptoms following initial antibiotic treatment—a population that has grown to more than two million Americans and continues to increase. We sat down with Principal Investigator, Dr. Felicia Chow, to learn more about plans for this California Clinical Trials Network node, and her role as Director of the UCSF Neuro-Infectious Diseases Clinic

Dr. Chow is a neurologist specializing in infectious diseases. This means she’s particularly interested in how pathogens like bacteria, viruses, and parasites, invade the nervous system and cause neurological damage and/or symptoms. Her expertise is in managing conditions such as brain abscesses, neurocysticercosis (a parasitic infection of the brain), neurosyphilis, and neurological complications associated with HIV. Additionally, she is well-versed in infectious causes of meningitis, encephalitis, and myelitis.

Top Lifestyle Interventions to Aid Recovery in Tick-borne Illness: An Interactive Discussion with Concrete Takeaways

Dr Sunjya Schweig Speaker Series

BAL Spotlights Series

 

In this article transcribed from our Distinguished Speaker Series webinar, Sunjya Schweig, MD, founder and CEO of the California Center for Functional Medicine and member of Bay Area Lyme’s Scientific Advisory Board, discusses how recovering from tick-borne illnesses can be aided through carefully devised combinations of conventional and functional medicine, tailored to the individual person. Nancy Chimsky, retired interior designer and Lyme patient, who has been challenged with tick-borne infections since 1997, shares her personal Lyme story in the first part of this webinar.

Dr. Schweig discussed the top four lifestyle areas critical to aiding recovery and explains how and why optimizing each area is key to treating and managing Lyme and tick-borne disease. The lifestyle areas are:

  • Diet and nutrition
  • Stress reduction and neuroplasticity
  • Sleep
  • Detoxification

Dr. Schweig also discussed the important role that botanical and herbal medicines have in recovery. He discusses the individualized nature of treatment and testing for Lyme disease, including the use of various lab tests and the consideration of co-infections. Finally, Dr. Schweig emphasizes the importance of finding the right healthcare practitioner who can address the complexity of Lyme disease and provide appropriate treatment. The session concludes with a Q&A session about what people are doing to manage their health, and Dr. Schweig provided practical suggestions and concrete takeaways based on these questions from attendees.

Ticktective with Dana Parish: Mother’s Against Lyme: Congenital Lyme disease

Ticktective™ with Dana Parish

Isabel Rose

Isabel Rose is a writer, performer and activist. She has addressed audiences large and small urging understanding of, and support for, both congenital Lyme disease and rights for transgender children and their families. Rose is working on a memoir chronicling her lifelong battle against Lyme disease which she passed along, in utero, to both her children. Isabel is on the executive board of Project Lyme and co-chair of Mothers Against Lyme. She leads a bi-monthly support group for women coping with Lyme disease and its impact on their lives and on the lives of their children.

To read the podcast transcript, click here.

Dana Parish’s Personal Odyssey: Her Quest for the Right Diagnosis and Treatment of Lyme Disease 

BAL Spotlights Series

 

Dana Parish
Dana at The Voice where she performed her song “Broken Ones”

Dana Parish is a singer/songwriter based in New York City, signed with SonyATV. She is renowned for her captivating vocals and emotionally charged performances. Her debut single, ‘Not My Problem,’ from her album Uncrushed, reached the #23 spot on the Billboard charts, establishing her as one of the highest-charting independent artists in history.  She notably contributed two songs, ‘Thankful’ and ‘Always be Your Girl,’ to Celine Dion’s album Loved Me Back to Life. Additionally, her song ‘Someday I’ll Fly’ by G.E.M. became a #1 hit in China. Another one of her compositions, ‘Broken Ones,’ performed by Jacquie Lee, a finalist on Season 5 of The Voice, achieved chart success. A fearless advocate for the Lyme community, Dana champions the cause of individuals suffering from Lyme and tick-borne diseases. In May 2016, she delivered a heartfelt performance of ‘Pull You Through’ at LymeAid, Bay Area Lyme’s annual fundraising event, contributing to raising more than $815,000 for Lyme disease research. In 2021, she co-authored Chronic: The Hidden Cause of the Autoimmune Pandemic and How to Get Healthy Again with Steven Phillips, MD. Dana hosts the Ticktective podcast and video series for Bay Area Lyme Foundation and is a member of our advisory board.

In this interview, Dana Parish discusses her life before being diagnosed with Lyme disease and the challenges she faced in getting accurate diagnosis and correct treatment. She talks about her career in the music industry before she was bitten by a tick. Dana shares her experience with being misdiagnosed and the physical and mental symptoms she experienced. She also discusses the importance of raising awareness about Lyme disease and advocating for better treatment options.  Dana also touches on the similarities between persistent Lyme disease and Long Covid and the potential for overlap in research and treatment. She emphasizes the importance of being your own advocate and demanding proper treatment. Finally, Dana shares her thoughts on the current protocol for treating tick bites and the need for aggressive and early treatment.

Combination Antibiotic Therapies May Be Capable of Eradicating Lyme Disease, According to Investigational Study Funded by Bay Area Lyme Foundation

Monica E. Embers, PhD

FOR IMMEDIATE RELEASE

 

Combination Antibiotic Therapies May Be Capable of Eradicating Lyme Disease, According to Investigational Study Funded by Bay Area Lyme Foundation

 Study identifies persistent Lyme bacteria in tissue samples and points to need for clinical studies of combination antibiotics in persistent Lyme

PORTOLA VALLEY, Calif., November 21, 2023—Bay Area Lyme Foundation, a leading public foundation sponsor of Lyme disease research in the US, today announced results of a laboratory study published in the peer-reviewed journal Frontiers in Microbiology that identifies seven combination therapies that are superior to courses of single antibiotics for treating persistent Lyme disease in an investigational model. These combination therapies were able to eradicate the bacteria from tissue samples, and the study was conducted by Bay Area Lyme Foundation Scientific Advisory Board member Monica Embers Ph.D., along with other researchers from Tulane University.

“Our results support the experience of Lyme disease patients whose symptoms have not resolved after a standard course of antibiotics, and these new data suggest that combination therapy should be investigated in clinical studies for treating persistent human Lyme disease,” said Embers, an associate professor of microbiology and immunology and director of Vector-borne Disease Research at Tulane National Primate Research Center.

While none of the single courses of antibiotics eliminated persistent infection in this investigational study, some combinations of already FDA-approved antimicrobial treatments were able to eradicate the bacteria. Specifically, four different dual combinations of antibiotics (doxycycline and ceftriaxone; dapsone and rifampicin; dapsone and clofazimine; doxycycline and cefotaxime) and three triple combinations of antibiotics and antimicrobials (doxycycline, ceftriaxone and carbomycin; doxycycline, cefotaxime and loratadine; dapsone, rifampicin and clofazimine) eradicated persistent infections of Borrelia burgdorferi, the bacteria that causes Lyme disease.

Research Funded by Bay Area Lyme Foundation Identifies New Investigational Therapy Regimen Capable of Irreversibly Damaging Lyme Bacteria in Laboratory Tests 

Tim Haystead, PhD

FOR IMMEDIATE RELEASE

 

Research Funded by Bay Area Lyme Foundation Identifies New Investigational Therapy Regimen Capable of Irreversibly Damaging Lyme Bacteria in Laboratory Tests  

Inspired by research that targets cancer tumors, these new findings in Lyme could also lead to novel R&D strategies for other diseases 

PORTOLA VALLEY, Calif. November 1, 2023—Bay Area Lyme Foundation, a leading sponsor of Lyme disease research in the US, today announced the development of a potential new drug, HS-291, that targets and destroys Borrelia burgdorferi, the bacterium that causes Lyme disease. Published in the peer-reviewed journal Cell Chemical Biology, this laboratory study represents a novel paradigm shift for anti-microbial treatment research as it is the first to target and inhibit Borrelia burgdorferi HtpG (high temperature protein G), a specific type of enzyme within the bacteria that causes Lyme disease— a condition affecting nearly 500,000 new patients annually. The research was conducted at Duke University School of Medicine, with collaboration from University of North Carolina, Tulane University, and Stanford University, and HS-291 is currently in preclinical stage testing at UC Davis. 

“As Lyme disease is currently treated with broad spectrum antibiotics and there are no targeted treatments, we are particularly excited about this discovery, and hopeful that our novel Lyme disease therapeutic HS-291 will specifically destroy the Lyme bacterium without off-target effects or antibiotic resistance,” said Timothy Haystead, PhD, professor of Pharmacology and Cancer Biology, Duke University School of Medicine, Bay Area Lyme Foundation grantee, and co-lead author. “This research has been an incredible opportunity to leverage knowledge from oncology to Lyme disease in order to design an investigational therapeutic that could one day benefit hundreds of thousands of patients with Lyme.” 

This new discovery has implications beyond Lyme disease as it demonstrates that using the drug HS-291 to deliver cellular toxins to HtpG, a type of non-essential enzyme that assists the folding or unfolding of large and complex proteins, greatly expands what can be considered druggable within any pathogen and opens a whole new area of infectious disease research.  

Bay Area Lyme Foundation Now Accepting Applications for 2024 Emerging Leader Award and Grant 

Emerging Leader Award Call for Entries 2023

FOR IMMEDIATE RELEASE

 

Bay Area Lyme Foundation Now Accepting Applications for 2024 Emerging Leader Award and Grant 

Annual grant seeks to attract innovative researchers with a new approach for diagnosing and treating tick-borne diseases

PORTOLA VALLEY, Calif., October 26, 2023—Bay Area Lyme Foundation, a leading sponsor of Lyme disease research in the US, is announcing a call for entries for their 2024 Emerging Leader Awards (ELA), which aim to recognize U.S. researchers from academia or the private sector who bring new approaches to the field of Lyme disease and embody the future of Lyme disease research leadership. This year, the Foundation ELA will present a $150,000 award for a researcher who is at the post-doctoral level through associate professor level. 

While applicants must have a defined scientific approach to advancing diagnostics and/or therapeutics for Lyme disease, the grants are open to researchers from other therapeutic areas as well as those who have previously worked in Lyme disease research. Applications will be accepted through March 1, 2024 at 11:59pm, Pacific Time. The full criteria and application for this award can be found here. 

“The world is seeing firsthand the damage that infections can cause – both in acute and chronic forms –and Lyme is no exception. Even today, it presents a significant hurdle for the scientific research community,” said Wendy Adams, research grant director Bay Area Lyme Foundation. “We intend for our Emerging Leader Award to encourage creative, driven scientists to embrace the challenge of developing accurate diagnostic tests and effective therapeutics for various stages of tick-borne diseases.”

Bay Area Lyme Foundation ELA Winner Uses Metabolic Modeling to Predict 77 Unique Drug Targets in Lyme Disease Bacterium

Peter Gwynne, PhD

FOR IMMEDIATE RELEASE

 

Bay Area Lyme Foundation ELA Winner Uses Metabolic Modeling to Predict 77 Unique Drug Targets in Lyme Disease Bacterium

Results will help inform future research and development of new Lyme disease therapeutics

PORTOLA VALLEY, Calif., October 19, 2023—Bay Area Lyme Foundation, a leading sponsor of Lyme disease research in the US, today announced the findings of a study identifying new essential gene and enzyme drug targets in Lyme disease bacterium, which resulted, in-part, from a grant provided to Peter Gwynne, one of Bay Area Lyme Foundation’s 2022 Emerging Leader Award (ELA) winners. Published in the peer-reviewed journal mSystems, the study uses the most comprehensive metabolic modeling to date to predict 77 unique drug targets in Borrelia burgdorferi, the bacterium that causes Lyme disease—a condition affecting nearly 500,000 new patients annually.

“Lyme disease is often treated using long courses of antibiotics, which can cause side effects for patients and risks the evolution of antimicrobial resistance. Our research supplies the blueprint and scaffolding to build better Lyme disease therapeutics that do not have off-target effects for patients,” said Peter Gwynne, PhD, lead author on the study, research assistant professor at Tufts University School of Medicine, and Emerging Leader Award winner of the Bay Area Lyme Foundation. “Many of the 77 genes and enzymes predicted as essential represent candidate targets for the development of novel antiborrelial drug development.”

Current clinical guidelines recommend treatment of Lyme borreliosis with broad-spectrum antibiotics, which can pose risks to the patient’s microbiome. The bacterium that causes Lyme disease is extremely host-dependent, with a small genome and limited metabolism—making it an excellent candidate for the development of targeted, narrow-spectrum antimicrobials.

In the study, the researchers used in silico genome-scale metabolic computer modeling to construct a map of B. burgdorferi metabolism. This map was used to predict essential genes and enzymes that can be used as drug targets. Gwynne and the Tufts University School of Medicine research team validated these targets by repurposing existing drugs that kill B. burgdorferi in culture. While these drugs are not viable treatment options themselves, they provide a blueprint for future novel drug development.

Stealth Invader: Unveiling Lyme’s Hidden Past

Kris Newby

Ticktective Podcast Transcript

 

In this interview, author/filmmaker, Kris Newby, explains the murky history behind the US government’s involvement with Lyme disease and continued efforts to hide how the military’s bioweapons programs caused the spread of tick-borne pathogens. She explains how alliances between pharmaceutical companies, insurance companies, university-based research teams, and the government led to inaccurate testing and denials of care, causing untold suffering to millions. Kris draws parallels between Long Covid and chronic Lyme and shines a light on how we are being dismissed, misinformed, and deliberately misled by the very institutions that should be protecting us.

Under Our SkinDana Parish: I’m so excited to welcome Kris Newby. Kris is an award-winning medical science writer and a senior producer of the Lyme documentary Under Our Skin, which premiered at the Tribeca Film Festival and was a 2010 Oscar Semifinalist. Her book Bitten: The Secret History of Lyme Disease and Biological Weapons has won three international book awards. I loved your book so much for journalism and narrative nonfiction. Kris has two engineering degrees and has worked as a science technology writer for Stanford Medical School, Apple Computer, and other Silicon Valley companies. Welcome Kris! 

Kris Newby: Thanks Dana, and thanks for having me on the podcast. 

Dana Parish: I’m so excited because you are one of the greatest historians of Lyme and you were so helpful to Steve Phillips and me when we wrote our book, Chronic. We loved your book. And Under Our Skin is the film that informed my view of what was really happening with Lyme disease. You’ve been working on Lyme education for 20 years. You’ve done a film, you’ve written a great book, you’ve published articles, you’ve worked in nonprofits, and you recovered from your own tick-borne diseases. How big is the Lyme problem? 

Kris Newby: Ginormous and growing. The CDC’s latest estimate is half a million new cases of Lyme disease a year, and I’m sure everyone remembers when Covid hit a half a million. It was like, “Oh no, we have a problem here.” But for some reason, Lyme disease hasn’t bubbled up as a problem. 500,000 cases a year is an average of 1,300 a day. And, obviously, that mostly happened in the summer, so it’s huge. I am often frustrated because I’ve been working in this field for 20 years and not much has gotten better. The disease—this tick-borne disease—if it’s caught early, it can be cured. But we have a test that isn’t reliable in the first month, and later on it’s no better than a coin flip. About 10-30% of the people who are treated with a recommended treatment—according to what study you read—go on to become chronically ill. And the establishment has invested very little in new treatment protocols. I did an analysis with another Bay Area Lyme person of the NIH grants for the last five years, and less than 1% of the Lyme disease NIH budget is spent on treatments