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

David Putrino, PhD

BAL Spotlights Series

 

In this episode of Ticktective, Dana Parish interviews David Putrino, PhD, about the new Cohen Center for Recovery From Complex Chronic Illnesses at Mount Sinai which will focus on the treatment and study of Long COVID, chronic Lyme, and ME/CFS. Dr. Putrino begins by stressing the importance of complete assessment and individualized treatment for complex chronic conditions. He emphasizes the need for improved medical student and provider education to better understand and treat these illnesses.

“Death is not the only serious health outcome from COVID. An acute SARS-CoV-2 infection can absolutely rob you of your previous life as effectively as a severe infection that ends in death as anything else.”

– David Putrino

Putrino addresses the early COVID epidemic and the eventual identification of Long COVID. He discusses Long COVID’s viral persistence and inflammation and therapeutic approaches targeting endothelial dysfunction and platelet hyperactivation. The medical profession’s intractable denial and skepticism concerning these chronic diseases and the need for new diagnostic tools and research funding are also addressed.

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.

Dr. Akiko Iwasaki, Voted TIME100 Most Influential Person in Health, Discusses the Battle Against Infectious Disease

Ticktective™ with Dana Parish

Akiko Iwasaki, PhD

Akiko Iwasaki, PhD, is a Sterling Professor of Immunobiology and Molecular, Cellular, and Developmental Biology at Yale University, and an Investigator of the Howard Hughes Medical Institute. She received her Ph.D. from the University of Toronto in Canada and her postdoctoral training from the National Institutes of Health. Her research focuses on the mechanisms of immune defense against viruses at the mucosal surfaces, and the development of mucosal vaccine strategies. She is the co-Lead Investigator of the Yale COVID-19 Recovery Study, which aims to determine the changes in the immune response of people with long COVID after vaccination. Dr. Iwasaki also leads multiple other studies to interrogate the pathobiology of long COVID, both in patients, and through developing animal models of long COVID. Dr. Iwasaki was elected to the National Academy of Sciences in 2018, to the National Academy of Medicine in 2019, to the European Molecular Biology Organization in 2021, and to the American Academy of Arts and Sciences in 2021.

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.

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.

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.

Stealth Invader: Unveiling Lyme’s Hidden Past

Kris Newby

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.

Under Our SkinDana 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