Lyme disease Archives - Bay Area Lyme Foundation

The Numbers Don’t Lie: Why the NIH Consistently Underfunds Research into Lyme Disease

By Bay Area Lyme Foundation

An In-depth Interview with Kris Newby, Author of “Bitten”

“We need to let the NIH know that we’re watching them, and we want results.”

– Kris Newby

Kris Newby, author of ‘Bitten,’ is investigating government spending on Lyme disease research, which is strongly influenced by the flawed original disease definition of Lyme disease. She summarizes the impact of the 2018 Tick-Borne Disease Working Group’s report, explains where research funding has and is currently being directed, and calls for money to be spent on better diagnostics and treatments for Lyme disease sufferers instead. Kris explores potential actions that Lyme patients can take to help direct the course of funding, such as communicating with Congress, supporting advocacy groups, and donating to research organizations.

The views and opinions expressed in this article are those of the interviewee and do not necessarily reflect the views or positions of Bay Area Lyme Foundation.

Kris Newby is watching our government, and watching quite closely. She has a lot to say about how government money is spent on a disease that, according to CDC estimates, infects almost 500,000 people annually in the US, causing untold pain, suffering, loss of livelihood, and, in extreme cases, severe mental illness, including suicidal and homicidal events.

Of course, we are talking about Lyme disease—the pariah of infection-associated chronic conditions.

Toxic Load: Healing from Tick-borne Disease and Autoimmune Illness

By Bay Area Lyme Foundation

BAL “Quick Bites” Series

“If you have an autoimmune disease, our allopathic system does not have great answers that are solution-based or root cause-based to chronic complex illness.”

– Jill Carnahan, MD

In this edition of our Ticktective video and podcast series, Dana Parish sits down with Jill Carnahan, MD, a functional medicine doctor specializing in Lyme disease, tick-borne illnesses, mold toxicity, and other complex chronic health issues. Carnahan discusses her background growing up on a farm and how it influenced her approach to medicine. She shares her experience being diagnosed with breast cancer and the potential environmental factors, such as atrazine, that may have contributed to it. Carnahan talks about her cancer treatment and her belief in finding and addressing root causes in medicine. She then discusses her expertise in Lyme and tick-borne diseases, explaining how she evaluates and treats these conditions. She emphasizes the need for a clinical diagnosis of Lyme disease due to the limitations of mainstream tests. Carnahan also sheds light on the connection between mold exposure and chronic illness, including dementia and psychiatric disorders. She provides insights into testing, detoxification, and treatment strategies for mold-related illnesses. The interview concludes with information about connecting with Dr. Carnahan’s clinic, her book, and her documentary.

Understanding Infection-associated Chronic Illness: How the Immune System Responds to Persistent Infection

Distinguished Speaker Series with Michal Tal, PhD

By Bay Area Lyme Foundation

Distinguished Speaker Series Transcript

“I want to leave you with hope. I think we’re going to be unstoppable because I think that these are solvable problems. These are answerable questions. I think that there are already a lot of existing tools in immunology that just need to be brought into the fight, and we can change this.”

– Michal Caspi Tal, PhD

Michal Caspi Tal: In the chronic illness world, I think that there is something about hope with a capital ‘H’ that is precious. I think it always has to be. I want to talk a little bit about what my lab is doing, where I think we could go in the future and the hope that I have for how we move forward, how we solve this, and how we change this for those who come after us. So, I’ll tell you a little bit about some of the recent things that have come out of the lab, what the lab is working on now, and where we want to go.

New Study Shows How Borrelia burgdorferi Evades the Immune System

Recently, we published a study in collaboration with Hanna Ollila’s lab where we compared people who’ve had Lyme and have had a diagnosis of Lyme versus people who’ve never had a diagnosis of Lyme. We found a genetic difference in a sweat protein that nobody—including me—had ever thought about before. We tested it against the bacteria in our lab, and we saw that it had a huge effect; we tested it in mice, and it had a huge effect. So that’s really exciting. We had another paper that came online yesterday that is one of these last papers from my postdoctoral work over at Stanford, where we actually managed to figure out some of how Borrelia burgdorferi, the bacteria that causes Lyme, manages to evade immune clearance.

Any respectable pathogen that can establish a persistent infection needs to figure out your immune system to the point that it can evade it. The fact that it has persisted means that it was able to evade your immune clearance. And so, I got to that from a very interesting direction working on immune regulation, trying to understand these brakes on the immune response and how they impact the response to infection. The immune system has the power to kill you and obviously, nobody has any incentive for that to happen. So, there are a lot of mechanisms in place to put brakes on the immune system and reign it in. One of the huge developments in cancer over the last two decades has been reevaluating the question: can we take those brakes off? So in my postdoc, I was studying a particular checkpoint where this was turning into an exciting immuno-oncology target, and I said, ‘I want to look at how this checkpoint is used in infection.’ I realized that this checkpoint was being used to help you survive an acute infection, but created a vulnerability for pathogens to evade immune clearance and establish chronic infection much like it allows cancer cells to evade immune clearance. In an amazing collaboration with Irv Weissman, Balyn Zaro, and Jenifer Coburn we realized that the bacteria that cause Lyme disease manipulate this brake and that’s how I became fascinated with Lyme. But I also became concerned about turning off this brake in cancer patients because I was concerned about what would happen if you used this on cancer patients during an active infection. Indeed, the clinical trials on this drug were ended due to increased death from infection, and I wish it hadn’t been tested during a worldwide pandemic.

Unlocking the Mysteries of Tick-borne Infections: Lyme Disease Biobank’s Tissue Collection Program Drives Research Momentum

Kirsten Stein and the Lyme Disease Biobank

By Bay Area Lyme Foundation

BAL Leading the Way Series

“My family knows that after I die, my tissues will be donated to Lyme Disease Biobank to provide researchers with the vital material they need to solve this horrible disease. I urge anyone with chronic/persistent Lyme to register with NDRI today. Let’s end this suffering together.”

-Kirsten Stein, Lyme Advocate

Lyme Disease Biobank^®, led by Liz Horn, PhD, MBI, is central to Bay Area Lyme Foundation’s 10-year search for answers to Lyme’s most intractable questions and is the most important program in the Foundation’s mission to make Lyme disease easy to diagnose and simple to cure.

The original Lyme Disease Biobank sample collection launched in 2014 focused on obtaining blood, urine, and serum samples from patients with early/acute Lyme disease. Once this program had been fully established, the Lyme Disease Biobank team explored adding tissue samples to the Biobank. Tissue samples could help researchers expand their investigations beyond the early stage of infection into how chronic/persistent Lyme and other tick-borne diseases impact the central nervous system, joints, and organs of Lyme patients.

With the tissue bank objectives defined, the Biobank connected with specialist organizations to provide the critical support needed to support sample collection and make the development of a tissue bank a reality.

Post-Mortem Tissue Collection Planning

Lyme Disease Biobank established a key partnership with the nonprofit National Disease Research Interchange (NDRI) to provide logistics for post-mortem tissue collection for the new tissue program. The Biobank also partnered with MyLymeData.org, allowing Lyme patients registered with the Biobank to link their MyLymeData profile to their tissue donation if desired. Bringing these two resources together provides for the organizing and recovery of post-mortem (after death) tissue. It ensures samples include redacted (removes identifying information) detailed patient medical histories—an important nuance for Lyme disease researchers.

“Although it is an emotional and difficult idea for anyone to plan to donate parts of their body to science after they have died, we believe that this decision is an important way for Lyme patients to change the course of Lyme disease research. Having access to tissues from the brain, heart, joints, and central nervous system of Lyme patients allows researchers to prove unequivocally that Lyme is present in tissue and contributes to patient suffering,” explains Linda Giampa, Executive Director, Bay Area Lyme Foundation and board member of Lyme Disease Biobank.

Young Hearts, Hidden Battles: A pediatric infectious disease physician’s perspective on Lyme disease and neuropsychiatric manifestations

By Bay Area Lyme Foundation

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: 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.

New Discovery Identifies “Don’t Eat Me” Protein that Allows Lyme Bacteria to Evade Body’s Immune Response

By Bay Area Lyme Foundation

FOR IMMEDIATE RELEASE

New Discovery Identifies “Don’t Eat Me” Protein that Allows Lyme Bacteria to Evade Body’s Immune Response

Stanford University/MIT/UCSF study funded by Bay Area Lyme Foundation offers new direction for tick-borne disease research, paving the way for potential new discoveries

Palo Alto, CA, May 7, 2024—Bay Area Lyme Foundation, a leading sponsor of Lyme disease research in the U.S., today announced a study finding a new mechanism of immune evasion used by Borrelia burgdorferi (Bb), the bacterium that causes Lyme disease. This study is the first to identify the specific Borrelia protein that acts as a “don’t eat me” signal to the body’s immune system in people with Lyme disease, offering insight into how the bacteria may persist in Lyme patients and introduces an entirely new research direction toward potential future treatments. The research was conducted at Stanford University and University of California San Francisco and funded in part by Bay Area Lyme Foundation. This groundbreaking data posted on bioRxiv on April 30, 2024, is expected to be published in a peer-review journal in the future.

“One of the big mysteries of Lyme disease has been how Borrelia is able to evade and survive the immune system – and this study helps answer that question. We’ve unlocked a critical door to understanding how this bacteria, and possibly other pathogens, manage to trick the immune system to evade clearance,” said lead author Michal Tal, PhD, principal scientist, Massachusetts Institute of Technology, and a Bay Area Lyme Foundation 2018 Emerging Leader Award winner who has received additional funding from the organization for this project.

In this study, researchers found that P66, a known Borrelia surface protein and one of the IgG Western Blot testing “bands” used for diagnosis, can inhibit an important portion of the immune response.

Keeping Frontline Workers Safe: New Program Will Educate Firefighters At Risk for Lyme Disease

Functional Medicine for First Responders

By Bay Area Lyme Foundation

BAL Leading the Way Series

Sunjya Schweig, MD, founder of the California Center for Functional Medicine, discusses a new program he is developing with funding from Bay Area Lyme to provide education and awareness about Lyme disease and the risks of tick-borne infections for firefighters. Firefighters have a profile of unique occupational exposures, including tick bites, and there is a significant lack of education on this topic. This new program aims to create professional, engaging videos featuring firefighters sharing their experiences and providing information on tick bite prevention, checking for ticks, and what to do if bitten. The goal is to roll out the program in California first, targeting professional firefighter and first responder organizations and eventually expanding nationwide. The exact number of firefighters living with Lyme disease is unknown, but it is acknowledged that they have both occupational and recreational exposures. This new program is seen as a way to bring awareness and education to this population and beyond.

“Lyme is not really on the radar for many firefighters. They may have had tick bites either in the line of duty or out mountain biking or hiking when they’re off duty, but many don’t know that tick-borne disease is a big problem.”

– Sunjya Schweig, MD

New Study Reveals Potential Treatment for Neurologic Lyme Disease

By Bay Area Lyme Foundation

FOR IMMEDIATE RELEASE

New Study Reveals Potential Treatment for Neurologic Lyme Disease

Blocking certain fibroblast growth factor receptors is shown to be effective in reducing inflammation and cell death caused by neurologic Lyme infection in laboratory studies

PORTOLA VALLEY, Calif. April 18, 2024—Bay Area Lyme Foundation, a leading sponsor of Lyme disease research in the US, recently announced the publication of a laboratory study showing that fibroblast growth factor receptor (FGFR) inhibitors may be appropriate as an anti-inflammatory supplementary treatment for neurologic Lyme disease, for which there are no universally effective treatments. Published in the peer-reviewed journal Frontiers in Immunology, this study shows FGFRs are activated in response to both live and non-viable Lyme bacteria in preclinical brain tissue models. Further, inhibition of FGFR1, FGFR2, and FGFR3 may help mitigate the neuroinflammatory and neuropathogenic effects of infection by the bacteria that causes Lyme disease, Borrelia burgdorferi.

“Our research shows a potential connection between neurological Lyme disease and several other neurological conditions, and this common pathway may explain why Lyme can be confused with many other conditions. Increasing our knowledge of FGFRs and their effect on the brain will help us understand the common mechanisms that may underlie Lyme disease and other neurological diseases,” said Geetha Parthasarathy, PhD, assistant professor at Tulane National Primate Research Center, Tulane School of Medicine, and a Bay Area Lyme Foundation 2019 Emerging Leader Award winner. “This data shows that FGFRs can be novel targets of anti-inflammatory therapeutics in Lyme patients with persistent neuroinflammation.”

“Our findings from this and our previous studies also offer important insight that may help to explain why some patients still experience chronic neurological symptoms even after a short course of antibiotics,” added Dr. Parthasarathy.

If Pain Had a Sound: The Hunt for Relief is Riddled with Hope and Madness

By Bay Area Lyme Foundation

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

By Bay Area Lyme Foundation

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.

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