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.

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.

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.

Ticktective with Dana Parish: The Chronic Illness Puzzle: Mold, Metals, Toxins, Infections

Ticktective™ with Dana Parish

Todd Maderis, ND

Dr. Todd Maderis is the Founder and Medical Director of Marin Natural Medicine Clinic in the San Francisco Bay Area. He specializes in treating tickborne infections, chronic viral infections, mold illness, and other conditions associated with complex chronic illnesses such as mast cell activation disorder and myalgic encephalomyelitis/chronic fatigue syndrome. 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 illnesses, he realizes each patient is unique and requires an individualized treatment strategy.

To read the podcast transcript, click here.

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.

Ticktective with Dana Parish: On the Front Lines of Lyme Treatment—a Conversation with Pioneer Kenneth Liegner, MD

Ticktective Podcasts

Ken Liegner, MD

Dana Parish interviews Dr. Kenneth Liegner, a Board Certified Internist practicing in Pawling, New York. He has been on the front lines of treating chronic Lyme and related infections since 1988. He has published in peer-reviewed scientific journals and is the author of In the Crucible of Chronic Lyme Disease—Collected Writings & Associated Materials.

To read the podcast transcript, click here.

The Misunderstood Infection that is Wreaking Havoc

Ticktective with Dana Parish and Edward B. Breitschwerdt, DVM, DACVIM, PhD

Ticktective Podcast Transcript

 

Ticktective™ with Dana ParishIn this wide-ranging conversation, Dana Parish talks with eminent veterinarian Dr. Edward Breitschwerdt about Bartonella infections, the diseases and symptoms presentations in humans, how the bacteria are transmitted, and how doctors often miss Bartonellosis as the root causes in sudden onset of psychosis, frightening behavioral changes, and inexplicable physical deterioration in humans. 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 us at bayarealyme.org.

Hi, I’m Dana Parish, and I’m so honored to be the guest host today for the Ticktective Podcast on behalf of Bay Area Lyme Foundation, of which I am a very proud advisory board member, and we are thrilled to welcome Dr. Ed Breitschwerdt today. He is the Melanie S. Steele, Professor of Medicine and Infectious Diseases at North Carolina State University College of Veterinary Medicine. He is also an adjunct professor of medicine at Duke University Medical Center. And we could read a bio for you that goes on forever because you are so incredibly distinguished. You’re the world’s leading expert, in many people’s opinions on, Bartonella, which is one of the main reasons that we’ve been brought together to talk here today. Thank you so much for agreeing to do this podcast and for being such an incredible ally and champion for this cause and this community and such a diligent, brilliant researcher and personally a friend. I really appreciate you, Ed. Thank you for being here. How did you get into this? A world of Bartonella?

Dr. Edward Breitschwerdt: I became a member of the American Society of Rickettsiology as a veterinary internist trying to understand Rickettsia. I was welcomed by members of the organization and a Rickettsiologist at CDC, Dr. Russ Regnery, at one of the national meetings, presented an abstract.  That abstract was to tell us as an audience that they had finally found the organism that caused cat scratch disease. And that organism was a Bartonella that became Bartonella henselae, a bacteria. The thing I always liked about Dr. Regnery is he was a very basic microbiologist and Rickettsiologist, and I was a clinician trying to understand the basic concepts of these bacteria and the diseases they cause. So, the next morning we actually ended up having breakfast at the same table when I asked him how difficult Bartonella was to isolate, and he said: ‘If I could find three feral cats in Raleigh, I could come up with at least one and probably two isolates,’ which really says anybody that is very kind, very benevolent and out there feeding and getting scratched by feral cats, really needs to be careful. So, we knew that fact 30 years ago, when Bartonella henselae was first (discovered). So, the initial research in our laboratory focused on Bartonella and cats.