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.

Principal Investigator, Dr. Felicia Chow, Talks about the New Lyme Clinical Trials Center at UCSF

UCSF Parnassus campus San Francisco

BAL Leading the Way Series

 

“I was seeing more and more patients here at UCSF who hadn’t traveled to Massachusetts, New Jersey, or other places endemic for Lyme, but rather had just been in the California Bay Area or on West Coast trips to places that we don’t consider—at least by the classic maps—as being endemic Lyme areas.”

– Felicia Chow, MD, Associate Professor of Neurology and Medicine at University of California, San Francisco

Felicia Chow, MD

There’s been much excitement in the Lyme community regarding the founding and development of the Lyme Clinical Trials Network since it was first announced. With a $1m seminal grant from Bay Area Lyme Foundation, UCSF joined the Clinical Trials Network to further study and develop better treatments for patients with Lyme and other tick-borne diseases. The Network aims to address the need for high quality, innovative clinical trials to develop evidence-based treatments for patients with persistent Lyme symptoms following initial antibiotic treatment—a population that has grown to more than two million Americans and continues to increase. We sat down with Principal Investigator, Dr. Felicia Chow, to learn more about plans for this California Clinical Trials Network node, and her role as Director of the UCSF Neuro-Infectious Diseases Clinic

Dr. Chow is a neurologist specializing in infectious diseases. This means she’s particularly interested in how pathogens like bacteria, viruses, and parasites, invade the nervous system and cause neurological damage and/or symptoms. Her expertise is in managing conditions such as brain abscesses, neurocysticercosis (a parasitic infection of the brain), neurosyphilis, and neurological complications associated with HIV. Additionally, she is well-versed in infectious causes of meningitis, encephalitis, and myelitis.

Ticktective with Dana Parish: 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.

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.

Mother’s Against Lyme: Congenital Lyme Disease

Isabel Rose Ticktective TRanscript

Ticktective Podcast Transcript

 

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

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.

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.

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

Ticktective with Todd Maderis, ND

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

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.