Mother’s Against Lyme: Congenital Lyme Disease

Isabel Rose Ticktective TRanscript

BAL Spotlights Series

 

Isabel Rose, writer, performer, and activist is interviewed by Ticktective host, Dana Parish. Rose is working on a memoir chronicling her lifelong battle against Lyme disease, which she passed on in utero to both of her children. They discuss Isabel’s experience with Lyme disease and its impact on her and her children. Isabel highlights the lack of awareness and understanding of Lyme disease among medical professionals, leading to misdiagnosis and delayed treatment. She also discusses the connection between Lyme disease and other health issues, such as depression, autism, and gender dysphoria. She champions support for congenital Lyme disease and transgender children and their families. She emphasizes the need for improved diagnostic tools, better treatment options, and increased public awareness of Lyme. Isabel also calls for further research into the connection between Lyme disease and negative health outcomes. She is on the executive board of Project Lyme and co-chair of Mothers against LymeNote: This interview has been edited for clarity.

“I was misdiagnosed for a horrifyingly long period of time—as were both my children.”

– Isabel Rose

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.

“I just took the position that these doctors were idiots, and they were wrong and that one day I would get better, and I would go on to do something with my knowledge—if I got to recover.”

– Dana Parish

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

Ticktective with Todd Maderis, ND

BAL Spotlights Series

 

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

Mold in petri dishDana 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.

Foundational Work Scores Results

John Aucott, MD

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

 

John Aucott, MDIn 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.

Research funded by Bay Area Lyme Foundation provides most comprehensive and geographically widespread whole genome sequencing of Lyme bacteria

Jacob Lemieux, MD, DPhil and Pardis Sabeti, MD, DPhil

FOR IMMEDIATE RELEASE

 

Research funded by Bay Area Lyme Foundation provides most comprehensive and geographically widespread whole genome sequencing of Lyme bacteria

Results may help inform future research and how physicians treat Lyme disease 

PORTOLA VALLEY, Calif., August 31, 2023—Bay Area Lyme Foundation, a leading sponsor of Lyme disease research in the US, today announced the results of the most comprehensive whole genome sequencing study of Borrelia burgdorferi, the bacteria that causes Lyme disease—a condition affecting nearly 500,000 new patients annually. Published in the peer-reviewed journal PLOS Pathogens, the study is the first to define the connection between genomic markers and symptom severity, confirming that RST1 OspC type A strains, which are the most common type of Borrelia bacterial strains found in the Northeast, are associated with more disseminated infection and thus more severe Lyme disease. These new discoveries will help inform physicians that different strains of the Lyme disease bacteria in the US may cause more severe Lyme disease symptoms, which may include joint swelling, debilitating fatigue, memory loss, headaches and serious inflammation of the heart and brain.

“Dissemination from the site of inoculation to organs such as the heart, brain and joints is a key step in the development of severe Lyme disease. Up until now, the bacterial genes and plasmids associated with dissemination in humans had not yet been identified,” said first author Jacob Lemieux, MD, DPhil, Bay Area Lyme Foundation Emerging Leader Award winner, an infectious disease staff physician at Massachusetts General Hospital and Assistant Professor at Harvard Medical School and an Associate Member of the Broad Institute of MIT and Harvard. “This work provides important clues into the bacterial genetic basis of dissemination and therefore suggests candidates for further study, including proteins to target for therapeutics and vaccines aimed at preventing dissemination.”

The new study also identifies the genetic changes that distinguish more virulent strains, including an enlarged genome size, a unique set of plasmids, and an expanded set of surface-exposed lipid-modified proteins called lipoproteins.

Pardis Sabeti, MD, DPhil, professor at Harvard University, Institute member of the Broad Institute of MIT and Harvard, a Howard Hughes Medical Investigator and co-lead author added, “This research will lay the foundation for developing sensitive diagnostics for Lyme disease and help physicians refine treatment plans, arming them with a better understanding of Lyme disease bacterial strains and their clinical manifestations.”

Bay Area Lyme Ambassador Shares Her Story

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.

Jessica Devine and her family
Jessica Devine and her family

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.

ALL ABOUT KIDS WITH LYME, PANS, MOLD ILLNESS

DAna Parish interviews Dr Charlotte Mao

BAL Spotlights Series

 

Charlotte Mao, MDIn this conversation between Ticktective™ host Dana Parish and Harvard-trained pediatric infectious diseases specialist Charlotte Mao, MD, the discussion focuses on how Dr. Mao gradually moved away from the narrow view of Lyme disease and began to champion understanding and therapeutics for children suffering from persistent Lyme. They explore tick-borne diseases and their connection to other chronic illnesses that are often misunderstood and misdiagnosed by conventional medicine. 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 non-profit foundation 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 our prevention programs. For more information about Lyme disease, please visit us at bayarealyme.org.

Dana Parish: Hi I’m so excited to guest host the Ticktective podcast today. I want to introduce you to a very dear friend of mine, one of the most brilliant, curious, interesting, funny, and dearest people. Please welcome Dr. Charlotte Mao. She is a pediatric infectious diseases physician with a special focus on Lyme disease and associated infections. She received her medical degree at Harvard Medical School and did her pediatric and infectious diseases training at Boston Children’s Hospital. The first 25 years of her career were focused primarily on pediatric HIV clinical care and clinical research, serving as a site co-investigator for numerous NIH funded multi-center pediatric HIV clinical trials at Boston Children’s Hospital. She turned her focus to Lyme and associated diseases after gaining extensive clinical experience with pediatric Lyme patients in Boston children’s hospital’s referring ID clinic. Then she joined the Pediatric Infectious Disease Department at Mass General Hospital and Spaulding Rehab Hospital Dean Center for Tick-borne Illness, where she was the pediatric IG specialist in a multidisciplinary clinic for children with complex Lyme disease. She is currently curriculum director for Invisible International. She most recently served on a tick-borne disease working group subcommittee for prevention and treatment and co-organized a Cold Spring Harbor Laboratory Banbury Conference on perinatal transmission of Lyme Disease. She’s also on the Bay Area Lyme Foundation’s Science Committee. Welcome, Charlotte. It’s so great to see you!

Lyme With a Side—or Two—of Babesia: The Most Common Co-Infection that is Frequently Missed

Babesia parasites inside red blood cell

Written by: Wendy Adams, Research Grant Director & Advisory Board Member, Bay Area Lyme Foundation

Unless you’ve been living under a rock for the last few years, you’ll have learned that tick-borne diseases are on the rise across the United States. Many theories exist as to why this is the case. However, most scientists that study ticks and their habitats agree that a combination of reasons—including climate change and human encroachment into tick habitats—are at least partially to blame.

Although Lyme disease (caused by the bacterium Borrelia burgdorferi) is the most common disease that humans acquire from tick bites, ticks can unfortunately transmit several other bacteria, viruses, and parasites to humans. Multiple infections can even be transmitted during the same bite. The confusing and overlapping disease symptoms caused by multiple infections makes it extremely difficult for doctors to recognize, diagnose and treat the different infections.

The Connection Between Mold Illness and Lyme Disease

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.

Inadequacy in the medical field to accurately diagnose a Lyme rash

– Wendy Adams, Research Grant Director, Bay Area Lyme Foundation

Erythema migrans (EM) is the hallmark sign of infection with B. burgdorferi. An EM is defined as an expanding annular (round) lesion or rash of at least 10cm (2.5in). Most rashes occur 3–30 days after infection, however there are case reports that show EMs can appear sooner than three days post infection.

The term “Bulls-eye” rash is often used synonymously with EM. But an EM is not required to have central clearing or a target appearance. The rash can take many forms, and may have a raised bump in the middle, can be itchy or warm, and can have a bluish cast like a bruise. It can be round or even oval. Only 20% of Lyme disease with an EM have the bulls-eye presentation. That means that only 1 in 6 total Lyme cases will have a rash with a target appearance.

The rash also may not be present at all. While the Centers for Disease Control and Prevention report that 70-80% of patients may exhibit the erythema migrans, this number can vary by study. For example, a 2010 study showed that in the state of Maine only 43% of Lyme patients exhibited this rash when infected with Lyme.