tick-borne illness Archives - Bay Area Lyme Foundation

UCSF’s New Lyme Clinical Trials Center: Addressing the Need for Evidence-Based Treatments for Lyme & TBD Patients

By Bay Area Lyme Foundation

Bay Area Lyme Happenings Series

UCSF has joined the Cohen Foundation’s nationwide Lyme Clinical Trials Network (CTN) for Lyme and tick-borne diseases. The new Lyme Clinical Trials Center (CTC) at UCSF was funded by a $1m grant from Bay Area Lyme Foundation and is led by Charles Chiu, MD, PhD, and Felicia Chow, MD, as co-principal investigators. As the West Coast ‘node’ in the network, UCSF’s new Lyme Clinical Trials Center will focus on interventional trials and diagnostic studies to improve diagnosis and treatment of Lyme disease.

In this presentation to patients with Lyme disease in Marin County just north of San Francisco, Dr. Chow explains how the CTC allows for a more diverse patient population to participate in Lyme clinical trials, which is critical for developing therapies that can help a wider range of patients. UCSF’s involvement also aims to help Bay Area Lyme raise awareness that Lyme disease is prevalent year-round in almost all California counties.

Dr. Chow discusses an upcoming trial at UCSF that will evaluate the use of transcranial direct current stimulation (tDCS) to improve cognitive symptoms in patients with chronic Lyme disease. Additionally, UCSF researchers are exploring the use of metagenomic sequencing and machine learning to develop more accurate diagnostic tests for Lyme and other tick-borne infections.

Note: This transcript of Dr. Chow’s presentation has been edited for length and clarity.

“I hope that through these clinical trials, we’ll be able to identify therapies that are helpful to patients and that, as a result, have an impact on clinically meaningful outcomes—from day-to-day function, quality of life, and all of those important measures that indicate that a treatment is successful.”

– Felicia Chow, MD

Lyme Patient Releases Smooth Jazz Album: Easing the Pain with Approachable Melodies

By Bay Area Lyme Foundation

Bay Area Lyme Spotlight Series

“My goal was to create happy, melodic, and approachable music that everyone in the Lyme community can enjoy during infusions, when they are feeling down, or just need a distraction of their own.”

– Steve Ehrlich, Lyme patient

Steve Ehrlich emigrated to the Bay Area from South Africa in 1989. Chronic Lyme Disease cut his career in the software industry short, and he turned to writing music. His virtual band, The Inter Section, released its debut album, Jazz and All That, in November 2024. He spends his days on his sofa writing music with his dog, Teddy, making sure the notes are correct.

Toxic Load: Healing from Tick-borne Disease, Long Covid, Mold, & Bad Food

By Bay Area Lyme Foundation

Jill Carnahan, MD

Jill Carnahan, MD, is a functional medicine doctor with a huge media presence, board-certified in Family Medicine and Integrative Holistic Medicine. She is the Medical Director of Flatiron Functional Medicine, a sought-after practice with a broad range of clinical services. As a survivor of breast cancer, Crohn’s disease, and toxic mold illness she brings a unique perspective to treating patients in the midst of complex and chronic illness. Her clinic specializes in searching for the underlying triggers that contribute to illness through cutting-edge lab testing and tailoring the intervention to specific needs.

Featured in People magazine, Shape, Parade, Forbes, MindBodyGreen, First for Women, Townsend Newsletter, and The Huffington Post as well as seen on NBC News and Health segments with Joan Lunden, Dr. Jill is a media must-have. Her YouTube channel and podcast features live interviews with the healthcare world’s most respected names.

Watch Now

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

By Bay Area Lyme Foundation

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

By Bay Area Lyme Foundation

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.

Watch Now

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

By Bay Area Lyme Foundation

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.

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

By Bay Area Lyme Foundation

BAL Spotlights Series

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.

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

Emerging Leader Award Call for Entries 2023

By Bay Area Lyme Foundation

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.”

Stealth Invader: Unveiling Lyme’s Hidden Past

By Bay Area Lyme Foundation

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.

Dana 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.

Infectious Minds: Unraveling the Link Between Infections & Psychiatric Disorders

By Bay Area Lyme Foundation

Ticktective Podcast Transcript

In this interview, psychiatrist Dr. Robert Bransfield explains the links between neuropsychiatric disorders and infections. He recounts his successes treating patients who repeatedly fail to respond to conventional interventions. Dr. Bransfield describes how clinical diagnoses of infection, along with correct administration and interpretation of testing, plus treating patients with antibiotics can, in many cases, lead to an abatement of a variety of psychiatric disorders, from psychosis to depression and anxiety. He also explores the connection between tick-borne diseases in maternal-fetal transfer of infections and the rise in autism in children.

Note: This interview has been edited for clarity. Bibliography and references are posted below.

“What are people in the future going to say about the Lyme crisis? I’m sure this will be judged by history as a great failure of our healthcare system, that we didn’t move quickly enough with this, and that people were holding back progress.”

—Dr. Robert Bransfield

Dana Parish: Hi, I am Dana Parish, and I am hosting the Ticktective podcast on behalf of Bay Area Lyme Foundation. I am here today with a wonderful psychiatrist, Dr. Robert C. Bransfield, MD, DLF APA. He is a graduate of Rutgers College and George Washington University School of Medicine. He completed his psychiatric residency training at Sheppard and Enoch Pratt Hospital. He’s board certified by the American Board of Psychiatry and Neurology in psychiatry and is a distinguished life fellow of the American Psychiatric Association. He’s a clinical associate professor of Psychiatry at Rutgers Robert Wood Johnson Medical School and the Hackensack Meridian School of Medicine, and he is well published in the peer reviewed literature. Welcome Dr. Bransfield. Thank you so much for talking to me today. How are you?

Robert Bransfield: Thank you for inviting me.

Dana Parish: It’s my pleasure. I’ve learned so much from you over the years about microbes and mental illness. You’ve blown my mind a million times and I cannot wait to share your knowledge today with everybody who’s going to watch and listen to this podcast. So, my first question is, does psychiatry pay enough attention and does medicine pay enough attention to microbes in infections and pathogens in mental illness? And if not, what is going on with the brain when we get neurologic infections?

Robert Bransfield: Well, not enough. If you look at the old views of what caused psychiatric issues, it was thought to be demonic possession. Then we blamed our mothers, and then we blamed serotonin. It doesn’t quite make sense (to people) that there’s something that causes psychiatric illness. But these illnesses don’t just come out of nowhere.

The problem is that nothing in the known universe for its size is more complex than the human brain. So, understanding the pathophysiology of the human brain is very challenging, especially the part involving psychiatric illness. That is much more complicated than general neurological illness where the circuits are not as complex as the circuits that impact psychiatric functioning. So, this causes a problem. When we look at all the possibilities, there are many things that contribute to mental illness—microbes are just one of them. But I think they are a very significant one and when you look long and hard enough, this does explain many psychiatric illnesses.