Young Hearts, Hidden Battles: A pediatric infectious disease physician’s perspective on Lyme disease and neuropsychiatric manifestations

Charlotte Mao, MD MPH

Distinguished Speaker Series Transcript

 

“Everything about this disease is infinitely more complex and nuanced than is taught to physicians.”

– Charlotte Mao, MD MPH

Charlotte Mao, MD MPHCharlotte Mao: Thank you Dana for that amazing introduction and Brandi too. I want to thank Brandi for so generously opening up your beautiful home for this event and Bay Area Lyme Foundation for inviting me to speak tonight about my personal perspectives as a pediatric infectious disease physician about Lyme disease in children, particularly neuropsychiatric manifestations. 

When Brandi asked if I might give a talk for this Speaker Series, I suggested this topic because, first, I hope there might be something instructive in some of my personal musings on key lessons I’ve learned about Lyme disease in the course of caring for children with this contested disease. Second, I want to highlight neuropsychiatric manifestations because I feel they generally are the least recognized by physicians as being potential manifestations of Lyme disease. Yet, taking into account all levels of severity, they are, in my view, actually quite common—certainly not uncommon—and when severe, they are among the most devastating of Lyme manifestations to the lives of children and their families.

Keeping Frontline Workers Safe: New Program Will Educate Firefighters At Risk for Lyme Disease

Functional Medicine for First Responders

BAL Leading the Way Series

 

Dr Sunjya SchweigSunjya Schweig, MD, founder of the California Center for Functional Medicine, discusses a new program he is developing with funding from Bay Area Lyme to provide education and awareness about Lyme disease and the risks of tick-borne infections for firefighters. Firefighters have a profile of unique occupational exposures, including tick bites, and there is a significant lack of education on this topic. This new program aims to create professional, engaging videos featuring firefighters sharing their experiences and providing information on tick bite prevention, checking for ticks, and what to do if bitten. The goal is to roll out the program in California first, targeting professional firefighter and first responder organizations and eventually expanding nationwide. The exact number of firefighters living with Lyme disease is unknown, but it is acknowledged that they have both occupational and recreational exposures. This new program is seen as a way to bring awareness and education to this population and beyond.

“Lyme is not really on the radar for many firefighters. They may have had tick bites either in the line of duty or out mountain biking or hiking when they’re off duty, but many don’t know that tick-borne disease is a big problem.” 

– Sunjya Schweig, MD

If Pain Had a Sound: The Hunt for Relief is Riddled with Hope and Madness

Katie Liljedahl's Lyme story

Written by: Katie Liljedahl, Lyme patient

BAL Spotlights Series

 

Katie’s journey with Lyme disease, as recounted three years ago, highlights the ongoing challenges faced by those affected by this debilitating illness. Despite her perseverance and a wonderful support system, Katie continues to grapple with intermittent flares. However, amidst these struggles, Katie has found a new home and a new love, demonstrating resilience in the face of adversity. Her story serves as a poignant reminder of the urgent need to improve Lyme disease diagnosis and treatment, ensuring that others do not endure similar hardships. By amplifying voices like Katie’s, we strive together towards a future where Lyme disease is easy to diagnose and simple to cure, allowing individuals to reclaim their lives and pursue their passions without the burden of infection-associated chronic illness. 

Spine strangled, muscles on fire, bones buzzing
I will migrate within you
I am relentless
My address is your body
This is the kind of pain that rages silently in
the caverns of marrow and suffocates hope.
It gyrates and bangs clamors and rattles
A parasite upon the soul~
it drowns out the voice of God.

– Katie’s journal; August 16, 2012

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, MD, 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.

Lyme Patient, Shellie Krick, Discusses a Better, Calmer Way to Get Through the Day

Shellie Krick Blog

BAL Spotlights Series

In her book, The Art of Living With Chronic Illness, Pain, and Disability: A Practical and Spiritual Approach Inspired by the 12-Step Recovery Model, author, and former social worker Shellie Krick, explores how she used the 12-step Al-Anon program as a template to cope with her Lyme disease. Shellie has experienced over 30 years of chronic health problems stemming from Lyme and Bartonella infections, misdiagnosis, and dangerous, unproven treatments—some of which caused serious harm. Her book stems from her personal journey, offering a step-by-step guide to developing a different way of handling daily life with a chronic illness or chronic pain.

 “I definitely wasn’t the type of person who liked sitting around doing nothing—Lyme has been really hard on me in that way. But through my book, if I can help just one person cope with their situation better, then I will feel I have accomplished a lot.”

– Shellie Krick

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.

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.”