Long Covid: What We Have Learned About Chronic Illness from the Front Lines

Ticktective™ with Dana Parish

David Putrino, PhD

David Putrino is a physical therapist with a PhD in Neuroscience. He is currently the Director of Rehabilitation Innovation for the Mount Sinai Health System, and a Professor of Rehabilitation and Human Performance at the Icahn School of Medicine at Mount Sinai. He develops innovative rehabilitation solutions for adults and children in need of better healthcare accessibility, and in 2019, he was named “Global Australian of the Year” for his contributions to healthcare. Since the beginning of the COVID-19 pandemic in 2020, David has been recognized globally as a leading expert in the assessment, treatment, and underlying physiology of Long COVID. His team has managed the care of over 3000 people with Long COVID and published multiple peer-reviewed scientific papers on the topic.

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.

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.

“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

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 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.

Dr. Liz Horn Explains How Lyme Disease Biobank Samples are Foundational to the LymeX Diagnostics Prize 

Lyme Disease Biobank

BAL Spotlight Series

 

In this interview, the LymeX Diagnostic Prize talked with Liz Horn, PhD/MDI, Principal Investigator for Bay Area Lyme Foundation’s Lyme Disease Biobank (LDB), about her work in Lyme disease, the challenges researchers face, how the LymeX Diagnostics Prize could help further our understanding of the disease and how Lyme patient samples from our biobank are critical to the competition’s success.

This interview has been edited from the original

“What’s exciting about the LymeX Diagnostics Prize is that you have a lot of different people with good ideas and different teams with a lot of different technologies trying to solve this problem.”

– Liz Horn, PhD/MDI

Lyme Disease BiobankThe LymeX Diagnostics Prize is a multiphase competition funded by the US Department of Health and Human Services (HHS) and the Steven & Alexandra Cohen Foundation to accelerate the development of Lyme disease diagnostics. Through October 2023, the 10 teams selected to be part of Phase 2 of the LymeX Diagnostics Prize are participating in a virtual accelerator designed to help them refine their concepts for detecting active Lyme disease infections in people. As the Phase 2 accelerator cohort continues to develop their diagnostics, the teams have access to scientific advisors who provide valuable insight and feedback from their extensive experience in Lyme disease diagnostics, one of whom is Dr. Horn. The Phase 2 cohort also has access to the blood and urine samples donated to LDB by Lyme patients.

A cancer biologist by training, Dr. Horn has spent her career working with nonprofit research organizations to help build research programs, registries, and biorepositories. She joined Bay Area Lyme Foundation in 2013 to lead the creation of a Lyme disease biorepository. As a scientific advisor for the LymeX Diagnostics Prize, Dr. Horn is mentoring participating teams through office hours and webinars.

LymeX: As the principal investigator for the Bay Area Lyme Foundation’s Lyme Disease Biobank, you have extensive experience in Lyme disease research. How did you first start working in the field, and what are you focusing on now with the biorepository?

Ticktective with Dana Parish: From Harvard MD to MS Patient: Wisdom from Both Sides

Ticktective Podcast: a Bay Area Lyme Foundation Program

Annie Brewster, MD

Annie Brewster is an Assistant Professor of medicine at Harvard Medical School, a practicing physician at Massachusetts General Hospital, in Boston, a writer and a storyteller. She is also a patient, diagnosed with Multiple Sclerosis in 2001. In response to the disconnection she experienced in healthcare, both as a patient and a provider, and motivated by her belief in the power of stories, she started recording patient narratives in 2010. Integrating her personal experiences with the research supporting the health benefits of narrative, she founded Health Story Collaborative (HSC) in 2013. HSC is dedicated to helping individuals navigating health challenges find meaning, and ultimately heal, through storytelling. She is excited by interdisciplinary, cross-institutional collaborations that break through resistance to change. She is widely published in the press and is author of The Healing Power of Storytelling: Using Personal Narrative to Navigate Illness, Trauma, and Loss (2022).

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.