Lyme disease symptoms Archives - Bay Area Lyme Foundation

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

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

By Bay Area Lyme Foundation

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

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.

Research Funded by Bay Area Lyme Foundation Identifies New Investigational Therapy Regimen Capable of Irreversibly Damaging Lyme Bacteria in Laboratory Tests

By Bay Area Lyme Foundation

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.

A Broader Definition of Health Through Ancestral Learning, Diet and Better Understanding of the Human Body

By Bay Area Lyme Foundation

Ticktective Podcast Transcript

In this podcast episode, host Lia Gaertner interviews Chris Kresser, a renowned expert in functional medicine and ancestral health. Kresser shares his personal health journey, which involved struggling with chronic illness and eventually finding his way to functional medicine. He discusses the importance of zooming in and zooming out in managing chronic illness, as well as the broader definition of health as human flourishing. Kresser also talks about his approach to diet, which involves giving himself permission to eat a variety of foods while prioritizing those that make him feel good. He emphasizes the importance of the ecosystem in managing chronic illness, focusing on factors such as gut health, lifestyle, stress management, and finding joy and fulfillment in life. Kresser concludes by offering advice to individuals with Lyme disease and chronic illness, highlighting the significance of addressing the entire ecosystem rather than solely focusing on the pathogen.

Lia Gaertner: Welcome to the Ticktective podcast and video series, 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 host, Lia Gaertner, director of Education and outreach. Lyme disease is the most common vector-borne disease in the USA and is a global issue. This show includes interviews with the researchers we fund, as well as other interesting people in the Lyme scientific community. We are a nonprofit foundation based in Silicon Valley. Thanks to a generous grant that covers all of our overhead, 100% of all donations go directly to support, research and prevention programs. You can find out more or donate@bayarealyme.org.

Lia Gaertner: Thank you, Chris Kresser, for joining me on the Ticktective™ video and podcast series.

Chris Kresser: Thanks for having me, Lia. It’s a pleasure.

Lia Gaertner: Chris Kresser is a renowned expert leading clinician and top educator in the fields of functional medicine and ancestral health. He is the author of the New York Times bestselling book, The Paleo Cure, as well as the book Unconventional Medicine. Chris is the co-founder and educational director of the California Center for Functional Medicine and the founder of the Kresser Institute. Chris regularly shares his evidence-based insights from trusted sources and world-renowned health practitioners and coaches through his blogs, webcast interviews, and his own podcast, Revolution Health Radio. So, Chris, during your decade-long struggle with chronic illness, you learned firsthand where healthcare mattered most and where it came up short. After seeking the help of more than 30 healthcare practitioners and ultimately having to learn and implement behavior changes on your own with limited support, you emerged with your health and a vision and drive for changing and improving the practice and education of functional medicine. Can you please tell us about your health journey?

Chris Kresser: I’ll be brief because it was long and arduous, but I took off to travel around the world for a couple of years in my early twenties, and I was doing a lot of surfing. I was in a little village on Sumbawa, which is an island in Indonesia, and a bunch of the people there who were surfing at that break got exposed to a waterborne pathogen, actually several pathogens. There was a stagnant pool of water near the river mouth there, and locals dug a trench to drain that pool into the river mouth. And all of that water where cows had been defecating went out into the surf break, which are often located right at the river mouth. And unbeknownst to a lot of us who were there surfing, we were exposed to it and I would say 70-80% of the people there got quite sick.

I took some antibiotics that I had in my medical kit and the acute phase of it passed relatively quickly. But as I continued to travel after that, I went to the Maldives and was there for a few months and I was in South Africa and Reunion Island, Mauritius, and Madagascar. After about six, seven months, I started feeling really sick and it became clear to me that it wasn’t something that was just temporary that was going to go away. So, I made my way back to Australia and that was where I started to seek medical care. And then when I didn’t make much progress, I decided to go back home to the US and although most of the doctors and other practitioners I saw meant very well and did their best to help me, it was pretty clear that the medical system was not set up to deal with those kinds of problems.

Research funded by Bay Area Lyme Foundation provides most comprehensive and geographically widespread whole genome sequencing of Lyme bacteria

Jacob Lemieux, MD, DPhil and Pardis Sabeti, MD, DPhil

By Bay Area Lyme Foundation

FOR IMMEDIATE RELEASE

Research funded by Bay Area Lyme Foundation provides most comprehensive and geographically widespread whole genome sequencing of Lyme bacteria

Results may help inform future research and how physicians treat Lyme disease

PORTOLA VALLEY, Calif., August 31, 2023—Bay Area Lyme Foundation, a leading sponsor of Lyme disease research in the US, today announced the results of the most comprehensive whole genome sequencing study of Borrelia burgdorferi, the bacteria that causes Lyme disease—a condition affecting nearly 500,000 new patients annually. Published in the peer-reviewed journal PLOS Pathogens, the study is the first to define the connection between genomic markers and symptom severity, confirming that RST1 OspC type A strains, which are the most common type of Borrelia bacterial strains found in the Northeast, are associated with more disseminated infection and thus more severe Lyme disease. These new discoveries will help inform physicians that different strains of the Lyme disease bacteria in the US may cause more severe Lyme disease symptoms, which may include joint swelling, debilitating fatigue, memory loss, headaches and serious inflammation of the heart and brain.

“Dissemination from the site of inoculation to organs such as the heart, brain and joints is a key step in the development of severe Lyme disease. Up until now, the bacterial genes and plasmids associated with dissemination in humans had not yet been identified,” said first author Jacob Lemieux, MD, DPhil, Bay Area Lyme Foundation Emerging Leader Award winner, an infectious disease staff physician at Massachusetts General Hospital and Assistant Professor at Harvard Medical School and an Associate Member of the Broad Institute of MIT and Harvard. “This work provides important clues into the bacterial genetic basis of dissemination and therefore suggests candidates for further study, including proteins to target for therapeutics and vaccines aimed at preventing dissemination.”

The new study also identifies the genetic changes that distinguish more virulent strains, including an enlarged genome size, a unique set of plasmids, and an expanded set of surface-exposed lipid-modified proteins called lipoproteins.

Pardis Sabeti, MD, DPhil, professor at Harvard University, Institute member of the Broad Institute of MIT and Harvard, a Howard Hughes Medical Investigator and co-lead author added, “This research will lay the foundation for developing sensitive diagnostics for Lyme disease and help physicians refine treatment plans, arming them with a better understanding of Lyme disease bacterial strains and their clinical manifestations.”

The Long and Winding Road: The Story of Bay Area Lyme’s Multi-Year Quest to Identify Treatments for Lyme Patients

By Bay Area Lyme Foundation

BAL Leading the Way Series

“The opening of a network of Lyme disease clinics is the culmination of many years of tireless work and the vision of a small group of determined women over 10 years ago. We are extremely optimistic that the Lyme Clinical Trials Network will accelerate the development of new treatments for patients with post-treatment and persistent Lyme disease.”

—Linda Giampa, Executive Director, Bay Area Lyme Foundation

When Bay Area Lyme Foundation (BAL) was formed a decade ago, its mission was clear: to make Lyme disease easy to diagnose and simple to cure. “And that’s still our goal,” emphasizes BAL co-founder Bonnie Crater, as she reflects on the last 10 years. However, appreciating the magnitude of the Foundation’s audacious mission requires an understanding of two complex—yet inextricably linked—medical domains: the world of diagnostics, and the world of therapeutics.

Bay Area Lyme Co-Founder Bonnie Crater

The ‘Holy Grail’ for Lyme disease is an accurate diagnostic test—or better yet a suite of specifically designed tests for the different stages of acute and persistent Lyme disease. Although great strides are being made in understanding the infection and the disease’s progression, the ‘silver bullet’ of accurate diagnostic tests continues to elude us. The current diagnostics for acute Lyme (a two-step process with an ELISA either followed by a Western blot or another ELISA) are fraught with problems. These tests may miss up to 70% of acute Lyme cases or deliver false negative results. They are unreliable for detecting acute Lyme and are ineffective indicators for anyone with a persistent/chronic tick-borne infection. (Watch or listen to our Ticktective with Brandon Jutras, PhD, to learn why the current direct detection tests for Lyme are so inaccurate.)

Add to this the fact that FDA-approved therapeutics—or ‘cures’—have not evolved much in 10 years either and foment controversy. A quick internet search on ‘How to treat Lyme disease’ will offer information from the IDSA (Infectious Diseases Society of America) stating that a 10-14-day course of oral antibiotics, such as amoxicillin or doxycycline, will do the job for someone with an EM (Erythema migrans) rash who has early/acute Lyme. But anyone who has had Lyme disease, been treated, and then experienced a continuation of symptoms knows that this recommended course of intervention often fails to clear the infection, leaving some persistent Lyme patients in limbo, and health care providers without an approved treatment protocol. Simply put, this is the continuing underlying treacherous terrain of Lyme, throwing up challenges in both diagnostics and therapeutics.

The Future of Lyme Diagnostics: How Wearable Technology May Lead to Fast, Accurate and Reliable Lyme Disease Detection

By Bay Area Lyme Foundation

BAL Leading the Way Series

Remember when we used to watch Captain Kirk talk into his chirping communicator and order Scotty to beam him up? And what about that handy medical scanner the size of a pack of cards that Dr. McCoy waved around to assess and diagnose his patients in the starship’s sick bay? We may now all have smartphones to stay in constant touch with each other, but outside of a state-of-the-art hospital with multi-million-dollar scanners and MRI machines, we are still some years away from the Star Fleet’s instantaneous medical technology, right?

Wrong.

Advances in our ability to gather real-time information on the human body are poised to revolutionize not just how we diagnose diseases, but make dramatic, life-altering, positive impacts on the critical timeline for diagnosis and treatment by detecting a disease event before symptoms occur. And Bay Area Lyme is leading the way by investing in research that will further illuminate our understanding of how—in real time—a Lyme infection impacts the human body through the data collected by wearable technologies.

The Connection Between Mold Illness and Lyme Disease

By Bay Area Lyme Foundation

Many experts agree that if you are a patient being treated for chronic Lyme disease, but are not getting better, underlying mold toxicity could be at fault. Mold illnesses and Lyme Disease share many symptoms and if all treatments have been exhausted for Lyme with no result, mold could be the hidden offender. According to the book New Paradigms in Lyme Disease Treatment, “mold toxicity causes patients to develop symptoms from Lyme infections and vice versa, and people with weakened immune systems are far more susceptible to sickness from mold…and doctors are just beginning to understand and explore it, and like Lyme disease, many conventional physicians are not even aware of it.”

Many people know that black mold poses a huge threat, but are unfamiliar with other types of mold causing health issues. Mold illness causes extreme inflammation, called chronic inflammatory response syndrome (CIRS) and when coupled with Lyme disease, symptoms such as fever, headache, and fatigue are exacerbated. Often, mold-related allergies are misdiagnosed or worse, many doctors assume the problems are psychosomatic. Because of this, many people are not aware they are suffering from CIRS plus Lyme disease simultaneously.

Santa Clara County Declares Lyme Disease Awareness

By Bay Area Lyme Foundation

SAN JOSE, Calif., Aug. 13, 2020 (GLOBE NEWSWIRE) — The Santa Clara County Board of Supervisors unanimously declared Lyme Disease Awareness in the County. The proposal, put forward by Supervisor Dave Cortese, brings a heightened and renewed focus on a growing public health crisis in the County.

On May 13, the Santa Clara County also promoted National Lyme Disease Awareness Month and the Center for Disease Control’s “Tick Lunch and Learn Series” on the County’s social media presence.

“With our belief that being outside is safer than being inside in preventing COVID-19 transmissions, it is important that we call attention to Lyme Disease, which is also a significant public health threat,” said Supervisor Dave Cortese. “Thank you to the Bay Area Lyme Foundation for bringing awareness to this tick-borne disease and the precautions we can take to prevent it.”

Lyme Disease and its co-infections represent the fastest-growing vector-borne disease in the country. Representing a significant public health threat, Lyme is an infectious disease transmitted to humans by the bite of an infected blacklegged tick, found in 56 out of 58 counties in California—or 97 percent. Early detection is key for a quick recovery, and that is where awareness can be life-altering.

Inadequacy in the medical field to accurately diagnose a Lyme rash

By Bay Area Lyme Foundation

– Wendy Adams, Research Grant Director, Bay Area Lyme Foundation

Erythema migrans (EM) is the hallmark sign of infection with B. burgdorferi. An EM is defined as an expanding annular (round) lesion or rash of at least 10cm (2.5in). Most rashes occur 3–30 days after infection, however there are case reports that show EMs can appear sooner than three days post infection.

The term “bullseye” rash is often used synonymously with EM. But an EM is not required to have central clearing or a target appearance. The rash can take many forms, and may have a raised bump in the middle, can be itchy or warm, and can have a bluish cast like a bruise. It can be round or even oval. Only 20% of Lyme disease with an EM have the bullseye presentation. That means that only 1 in 6 total Lyme cases will have a rash with a target appearance.

The rash also may not be present at all. While the Centers for Disease Control and Prevention report that 70-80% of patients may exhibit the erythema migrans, this number can vary by study. For example, a 2010 study showed that in the state of Maine only 43% of Lyme patients exhibited this rash when infected with Lyme.