Lyme Stories Archives - Bay Area Lyme Foundation

Dr. Scott Commins, Alpha-Gal Syndrome, and a Guide to Tick-Induced Meat Allergies

By Bay Area Lyme Foundation

Ticktective Podcast Transcript

Ticktective™ host Dana Parish interviews Scott P. Commins, MD, PhD, about the growing prevalence of alpha-gal syndrome, a food allergy condition caused by a tick bite, where people develop an allergic reaction to a sugar found in red meat and other mammalian products. Symptoms can include hives, gastrointestinal distress, and potentially life-threatening anaphylaxis, often occurring 3–6 hours after consuming specific foods. This syndrome is increasing, especially in the Southeastern United States, due to the spread of the Lone Star tick. Dr. Commins discusses the current state of research in the US and how investigators are working to develop immunotherapy approaches to help desensitize patients and potentially resolve the allergy over time.

Dana Parish: Welcome to the Ticktective Podcast, a program of the Bay Area Lyme Foundation, where our mission is to make Lyme disease easy to diagnose and simple to cure. I’m your host, Dana Parish, and I’m the co-author of the book Chronic, and I sit on the advisory board of Bay Area Lyme Foundation. This program offers insightful interviews with scientists, clinicians, patients, and other interesting people. We’re a nonprofit based in Silicon Valley, and thanks to a generous grant that covers a hundred percent of our overhead. All of your donations go directly to our research and prevention programs. For more information about Lyme disease, please visit us at bayarealyme.org.

Today, I welcome Dr. Scott Commins. He is a highly esteemed expert in the field of allergy and immunology at the University of North Carolina (UNC) and a pioneer when it comes to alpha-gal syndrome. You’ve heard about alpha-gal when a tick bite can cause a meat allergy, but there is so much more to know. So enjoy this interview. I hope you learn a lot and please share it with your doctors because there is such a lack of education about this very important syndrome, and doctors becoming aware of it will only help us patients.

Award-Winning Short-Form YouTube Series ‘Girl at a Bar’ Depicts Challenges of Living with Chronic Lyme

By Bay Area Lyme Foundation

Bay Area Lyme Spotlights Series

“I hope people with Lyme can see themselves on screen and they resonate with it.”

– Tracy Mulholland

We sat down with Tracy Mulholland, actress, writer, producer, and Lyme patient, who wrote, produced, and stars in the award-winning short-form series Girl at a Bar, made possible by a grant from Bay Area Lyme Foundation. The short-form series, now available on YouTube, aims to provide an entertaining, accessible narrative to raise awareness about Lyme. Tracy hopes it will resonate with those living with chronic conditions and spark more conversations and content about these experiences. We discuss Tracy’s personal story as the inspiration behind the show and how the series explores challenges relevant not only to people navigating chronic illness but also to life in general. Conversation topics include:

How the show is inspired by the creator’s own experiences with Lyme disease, including the social isolation and impacts on relationships that can occur during chronic illness.
An exploration around themes of identity, vulnerability, and empathy, drawing parallels to other chronic and invisible illnesses beyond Lyme.
In addition to the short-form series, Tracy is launching a related spin-off podcast series where others are challenged to push their comfort zones.
Each episode aims to humanize the Lyme experience, foster greater understanding, and inspire more diverse storytelling about chronic illnesses in media and entertainment.

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.

The Numbers Don’t Lie: Why the NIH Consistently Underfunds Research into Lyme Disease

By Bay Area Lyme Foundation

An In-depth Interview with Kris Newby, Author of “Bitten”

“We need to let the NIH know that we’re watching them, and we want results.”

– Kris Newby

Kris Newby, author of ‘Bitten,’ is investigating government spending on Lyme disease research, which is strongly influenced by the flawed original disease definition of Lyme disease. She summarizes the impact of the 2018 Tick-Borne Disease Working Group’s report, explains where research funding has and is currently being directed, and calls for money to be spent on better diagnostics and treatments for Lyme disease sufferers instead. Kris explores potential actions that Lyme patients can take to help direct the course of funding, such as communicating with Congress, supporting advocacy groups, and donating to research organizations.

The views and opinions expressed in this article are those of the interviewee and do not necessarily reflect the views or positions of Bay Area Lyme Foundation.

Kris Newby is watching our government, and watching quite closely. She has a lot to say about how government money is spent on a disease that, according to CDC estimates, infects almost 500,000 people annually in the US, causing untold pain, suffering, loss of livelihood, and, in extreme cases, severe mental illness, including suicidal and homicidal events.

Of course, we are talking about Lyme disease—the pariah of infection-associated chronic conditions.

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.

The Chronic Illness Puzzle: Mold, Metals, Toxins, Infections

By Bay Area Lyme Foundation

Ticktective Podcast Transcript

In this conversation with Dana Parish, Todd Maderis, ND, talks about his extensive experience treating tick-borne infections, chronic viral infections, mold illness, and other conditions associated with complex chronic illness. He underscores the significance of identifying the root causes of symptoms and how tailoring individualized treatment approaches is key to healing. Dr. Maderis also delves into the role of trauma in chronic illnesses and emphasizes the importance of gut healing and inflammation reduction through dietary choices. Dr. Maderis acknowledges the challenges involved in addressing chronic diseases and stresses the importance of a personalized, patient-centric approach.

“I think a lot of times in conventional medicine, we don’t think beyond the room that we’re sitting in with a patient, we have to ask about the environment. We have to look at more than just the symptoms the person’s presenting with in the office.”

– Todd Maderis

Dana Parish: I am so excited today because I’m here with Dr. Todd Maderis. Thank you so much for being here today. I’m thrilled to talk to you. Let me tell you a little about Dr. Maderis. He’s the founder and medical director of Marin Natural Medicine Clinic in the San Francisco Bay Area. He specializes in treating tick-borne infections, chronic viral infections, mold illness, and other conditions associated with complex chronic illness such as Mast Cell Activation Disorder, and ME/CFS. His approach to treating chronic illness is to identify all underlying causes of symptoms to provide a clear direction for treatment. With over a decade of experience treating Lyme disease and complex chronic illness, he knows that every patient is unique and requires individualized treatment therapy. Welcome! It’s great to see you!

Todd Maderis: Thank you for having me. It’s great to be here.

Dana Parish: How’d you get into this mess?

Todd Maderis: Gosh, that’s always a great question. You start going down a rabbit hole and sometimes you wonder, but I wouldn’t change a thing. My first five years of practice, I was treating people with common complaints: digestive issues, fatigue issues, thyroid issues, etc. I’m a naturopathic doctor, so we tend to see people that come with common complaints that maybe they’re not getting resolved in conventional medicine. Then one visit, I had a patient that brought in a Lyme disease test result. It was an iGenex test, but back then the results were pretty hard to interpret.

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.

Foundational Work Scores Results

By Bay Area Lyme Foundation

BAL 10-year Anniversary Series

10 Years of Collaboration Bringing Hope: How Dr. John Aucott’s Relationship with Bay Area Lyme Helped Get Groundbreaking Biobanks Launched to Fuel the Research Engine of Lyme Disease Investigations

In this blog, part of our 10-year anniversary blog series, we talk with John Aucott, MD, Associate Professor of Medicine at Johns Hopkins University, Director of the Lyme Disease Research Center, about his work and how his investigations are helping us understand persistent/chronic Lyme infections. A long-term collaborator and grant recipient of Bay Area Lyme Foundation, Dr. Aucott reflects on his history with our organization, the ongoing plight of Lyme disease patients, and the slow growth in government funding for investigations into the disease. He talks about the early days of identifying the need for well-characterized samples from Lyme patients and his role in helping launch biobank programs, including his own SLICE Study Biorepository and BAL’s Lyme Disease Biobank.

Bay Area Lyme: I want to take you right back to the very beginning of your relationship with Bay Area Lyme (BAL), the founding of your SLICE study and our Lyme Disease Biobank (LDB) and talk about everything that was happening 10 years ago. People talk about the “norming, storming and forming” stages of organizations, and there was an awful lot of activity going on 10 years ago in the world of Lyme disease. And so, please share your thoughts on what was happening around that time, your part in it, and how you came into the picture with BAL and our biobank.

SLICE Studies — The Study of Lyme disease Immunology and Clinical Events (SLICE), Johns Hopkins University Lyme Disease Research Center

John Aucott: My first memory is that I flew out to California and my agenda at that time was getting people interested in research. There was very little funding for Lyme disease research, and to some extent there still isn’t a great amount of funding for Lyme disease, especially the kind of research I do, which is clinical translational research. I’m an MD, so my research involves bridging basic science to human beings to patients. So, to be very candid about it, I was interested in getting BAL interested in my work. I pitched what we were doing. We had already set up the Johns Hopkins SLICE study, the Study of Lyme disease Immunology and Clinical Events. And at that point it was one of only two large scale biobanks collecting for Lyme disease. The other one is Dr. Gary Wormser’s, who still has a biobank in Valhalla, New York.

So, I was pitching the idea of a Lyme disease biobank to BAL, and this was a whole new concept. A biobank is a hard concept to sell initially because people don’t understand that setting up a biobank is like being Levi Strauss: It’s selling the Levis and the picks, and the shovels—not selling them the actual gold in your pocket. And it’s a hard pitch because people don’t understand that somebody has to supply the foundational work so that other people can mine for the gold. But BAL caught on to the idea that the biobank that we had at Hopkins was a crucial resource that would enable collaboration with other researchers to advance the scientific understanding of disease mechanisms and potentially identify and validate biomarkers for improving diagnostics and treatments.

LymeAid 2013 — LymeAid 2014 Scientific Panel (from left): Wendy Adams, John Aucott, MD, Carin Rollins, and Bill Robinson, MD, PhD

Bay Area Lyme bought into the importance of this idea. The first thing that happened was you asked me to be on the BAL Scientific Advisory Board soon thereafter. BAL expressed support for the SLICE study’s biobank at Hopkins and you actually gave us one of our first grants to help support our biobank work. So, that was the first thing that happened. We applied for a grant, and we got a grant from BAL to help us because we had not yet gotten federal funding for it. So, that was one of the first grants to support it, and now in 2023 we are finally receiving our first NIH funding.

Bay Area Lyme Ambassador Shares Her Story

By Bay Area Lyme Foundation

Guest Blog by Jessica Devine

Bay Area Lyme Foundation is one of the first sources of information I found when I was finally diagnosed. I realized through the years that only a few resources could always be relied upon for accurate information based on scientific research. I also feel connected to BAL because I was bit in California by a tick that carried Lyme, Babesia, Bartonella, Erhlichia, Rocky Mountain Spotted Fever and more. I have always trusted their information for over a decade now. What they do and continue to do to help this community is something I will always be grateful for.

Creating an uplifting space for Lyme patients has been my dream since my first TV interview when a local station asked me to come on and share my story. Once on camera, I was filled with passion when given the chance to speak about my story, the injustices of Lyme disease treatment and getting a late diagnosis.

From there, people started reaching out to me needing help. I had kind of lost myself in my illness and slowly, through advocacy work, I gained a feeling that I can only describe as finding your true purpose. When I help someone, I have peace.

I found groups to be depressing and I knew the only way to have the group that best served a patient in the ways I needed was to create it myself. I wanted a solution based group that required all of its members to act with kindness. Alongside my own Lyme doctor’s methods, member polls and an accumulation of top resources, I finally was able to create the first Lyme Disease and Co-Infections Directory to cover almost any topic related to these diseases. An easy way for a patient to find the information quickly and learn. I feel the more we understand about these diseases, why we have the symptoms we have and how to help ourselves heal, we become more hopeful and empowered.

From Long Covid to Long Lyme: Persistent Infections Drive Chronic Illness

Ticktective interview with Dana Parish and Amy Proal, PhD

By Bay Area Lyme Foundation

Ticktective Podcast Transcript

In this insightful conversation between Ticktective™ guest host Dana Parish and microbiologist Amy Proal, PhD, we investigate persistent pathogens, how they remain in the body after treatment often leading to chronic illness, and how they can be reactivated by new infections, including Covid-19. Note: This transcribed podcast has been edited for clarity.

Dana Parish: Welcome to the Ticktective Podcast, a program of the Bay Area Lyme Foundation, where our mission is to make Lyme disease easy to diagnose and simple to cure. I’m your guest host today, Dana Parish. I’m the co-author of the book Chronic, and I’m on the advisory board of Bay Area Lyme Foundation. This program offers insightful interviews with clinicians, scientists, patients, and other interesting people. We’re a nonprofit foundation based in Silicon Valley, and thanks to a generous grant that covers a hundred percent of our overhead, all your donations go directly to our research and our prevention programs. For more information about Lyme disease, please visit us at www.bayarealyme.org.

Today, on behalf of Bay Area Lyme Foundation, I am here with brilliant microbiologist Dr. Amy Proal. I have a little bio for her. I’m going to read right now. Dr. Proal serves as president and CEO of PolyBio Research Foundation, and she’s the chief scientific officer of the Long Covid Research Initiative, LCRI. She went to Georgetown, she has a PhD in microbiology from Murdoch University in Australia, and she is a rockstar in the field and a leader in the field of persistent pathogens. She has just come off of a huge press tour for her incredible work and the enormous grant that she just received for her Long Covid research, and I’m so excited to be one of the first people to talk to you after all this.

Amy Proal, PhD: Of course, Dana, thanks so much for having me. That was an amazing intro. I appreciate all of that. It’s great to be interviewed by you. It’s mostly just a friendly conversation, which is fun.

Dana Parish: So, congratulations on your grant. I found out about it all coming together because I saw it in Forbes and then in the LA Times, and then I saw it in the Financial Times and I was like, “Oh my God. This is front page news!” Can you talk a little bit about the work you’re doing in Long Covid?