Treating Complex Chronic Diseases: Novel Therapeutic Options for Lyme Patients

Bay Area Lyme Speaker Series with Steven Harris

BAL Happenings Series

 

Bay Area Lyme Speaker Series San Jose 2022
Dr Steven Harris speaking at the Bay Area Lyme Speaker Series in San Jose, September 29, 2022

Dr. Steven Harris, a physician specializing in Lyme at Pacific Frontier Medical, was guest speaker as part of our Distinguished Speaker Series. His presentation on the complexity of tick-borne diseases is transcribed below to share his invaluable insights into novel treatment options for those living with chronic/persistent Lyme and other intractable infections that severely curtail patients’ quality of life, bringing hope and restoring health to many. Note: This transcribed presentation has been edited for clarity.

What is “Precision Medicine”?

“The concept of precision medicine, which is a growing area, is where we look at an individual and try to create a tailored plan for that person. I think many doctors wish that we could have a ‘cookbook’ approach to medicine that would work for our patients. But unfortunately, that approach doesn’t work. Luckily, here in the San Francisco Bay Area, there are doctors offering precision medicine including Dr. Sunjya Schweig in Berkeley, Dr. Christine Green, with us at Pacific Frontier Medical, and Dr. Eric Gordon, at Gordon Medical Associates in Marin and others. And thankfully, we have Stanford and UCSF (our local medical centers) that we work peripherally with. In addition, the Open Medicine Foundation is making great strides in understanding illness and Dr. Mike Snyder’s group at Stanford who are working on multi omics for chronic fatigue that track an individual patient’s data.

Mike Snyder, PhD
Mike Snyder, PhD, Stanford University

“These doctors are working in their own fields, not necessarily just tick-borne diseases, but our work overlaps. For example, the Snyder Lab multi-omic study involves genomics, epigenomics, metabolomics, where they are looking at tons of data and assimilating a lot of this different data to try to create treatment plans that work for the individual, because of the fact that a ‘cookbook’ approach doesn’t work for this group of chronic complex patients. For example, we look at someone’s multi-ome and the parts that make them up, including their microbiome, epigenome among many others, which is becoming a bigger and more exciting field. One of the practical aspects we try to determine is how to address an individual’s level of inflammation, the diversity of their personal bacterial flora, and how to help compensate for any deficiencies—or over abundances—that help contribute to disease.

From Long Covid to Long Lyme: Persistent Infections Drive Chronic Illness

Ticktective interview with Dana Parish and Amy Proal, PhD

Ticktective Podcast Transcript

 

Ticktective™ with Dana Parish

In this insightful conversation between Ticktective™ guest host Dana Parish and microbiologist Amy Proal, PhD, we investigate persistent pathogens, how they remain in the body after treatment often leading to chronic illness, and how they can be reactivated by new infections, including Covid-19. 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 www.bayarealyme.org.

Amy Proal, PhD

Today, on behalf of Bay Area Lyme Foundation, I am here with brilliant microbiologist Dr. Amy Proal. I have a little bio for her. I’m going to read right now. Dr. Proal serves as president and CEO of PolyBio Research Foundation, and she’s the chief scientific officer of the Long Covid Research Initiative, LCRI. She went to Georgetown, she has a PhD in microbiology from Murdoch University in Australia, and she is a rockstar in the field and a leader in the field of persistent pathogens. She has just come off of a huge press tour for her incredible work and the enormous grant that she just received for her Long Covid research, and I’m so excited to be one of the first people to talk to you after all this.

Amy Proal, PhD: Of course, Dana, thanks so much for having me. That was an amazing intro. I appreciate all of that. It’s great to be interviewed by you. It’s mostly just a friendly conversation, which is fun.

Dana Parish: So, congratulations on your grant. I found out about it all coming together because I saw it in Forbes and then in the LA Times, and then I saw it in the Financial Times and I was like, “Oh my God. This is front page news!” Can you talk a little bit about the work you’re doing in Long Covid?

Ticktective with Dana Parish: All About Kids with Lyme, PANS, Mold Illness

Ticktective™ with Dana Parish

Charlotte Mao, MD

Dr. Charlotte Mao is a pediatric infectious diseases (ID) physician with special focus on Lyme disease and associated infections. She received her medical degree at Harvard Medical School and did her pediatric and infectious disease training at Boston Children’s Hospital. Ticktective Video and Podcast Editor: Kiva Schweig.

To read the podcast transcript, click here.

New Study Finds American Dog Tick Populations Expanding into Colorado, and Identifies Rocky Mountain Wood Ticks in 5 More Counties Than Documented by CDC

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New Study Finds American Dog Tick Populations Expanding into Colorado, and Identifies Rocky Mountain Wood Ticks in 5 More Counties Than Documented by CDC

Citizen scientists contributing to Bay Area Lyme Foundation’s Free Tick Testing program assist in identifying ticks capable of carrying disease in Colorado

Portola Valley, CA, October 25, 2022—Bay Area Lyme Foundation, a leading sponsor of Lyme disease research in the US, today announced results of a study published in the November issue of the peer-reviewed journal Ticks and Tick-borne Diseases demonstrating that ticks capable of carrying diseases, including Rocky Mountain spotted fever, Colorado tick fever and the neurotoxin that causes tick-borne paralysis, pose an emerging threat in Colorado. The results show American dog ticks are very much present in 16 counties in Colorado, where they were not previously identified by the CDC, and Rocky Mountain wood ticks are found in 38 of the 64 Colorado counties, whereas they had only been identified in 33 previously. The study leveraged several sources for the study, including ticks collected by citizen scientists as part of a free tick testing program offered by the Bay Area Lyme Foundation.

“The critical takeaway from this study is that Coloradans need to take preventative measures against ticks when outdoors, such as tick checks, and doctors should be more vigilant for symptoms of tick-borne diseases including those carried by Rocky Mountain wood ticks and American dog ticks,” said Linda Giampa, executive director, Bay Area Lyme Foundation. “This ecology study illustrates the power of leveraging citizen science, and we are grateful for the more than 20,000 ticks that were submitted to our national program and made this study possible.” 

Conducted by researchers from Colorado State University and funded by the Bay Area Lyme Foundation, the study aimed to quantify the current county-level distribution of Rocky Mountain wood ticks, Dermacentor andersoni, and American dog ticks, Dermacentor variabilis.  The study evaluated data from ticks collected by citizen scientists and evaluated  at Northern Arizona University as part of Bay Area Lyme Foundation’s Free Tick Testing program, distribution data from the Colorado Department of Public Health and the Environment,  veterinary surveillance at Oklahoma State University, and literature data.

Bay Area Lyme Foundation Offers $150,000 Grant for Emerging Leaders in Lyme Disease Research

2021 Emerging Leader Awards

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Bay Area Lyme Foundation Offers $150,000 Grant for Emerging Leaders in Lyme Disease Research

Annual award seeks to attract innovative researchers with a new approach to overcome the challenges of tick-borne diseases

PORTOLA VALLEY, Calif., October 19, 2022—Bay Area Lyme Foundation, a leading sponsor of Lyme disease research in the US, is announcing a call for entries for their 2023 Emerging Leader Awards (ELA), which aim to recognize both established and up-and-coming researchers bringing new approaches and creative thinking to the field of Lyme disease. This year, the Foundation has increased the ELA award to $150,000 for researchers in academia or the private sector who are at the post-doctoral level through associate professor level. 

While applicants must have a defined approach to improving diagnostics and therapeutics for Lyme disease, the grants are open to those who have previously worked in Lyme disease research as well as researchers from other therapeutic areas. Applications will be accepted through February 15, 2023 at 11:59pm, Pacific Time. The full criteria and application for this award can be found at https://www.bayarealyme.org/our-research/emerging-leader-award/. 

“Despite modest increases in government funding, there is still a significant need for ‘out of the box’ ideas pulled from proven scientific approaches in other therapeutic areas,” said Wendy Adams, research grant director Bay Area Lyme Foundation. “We fund innovative scientifically-sound research and are seeking driven, rigorous scientists who can help make progress towards developing accurate diagnostic tests and effective therapeutics for various stages of the disease.”

The Emerging Leader Award is designed to support research that will increase the scope of investigation in Lyme disease and help develop better diagnostics and treatments. Bay Area Lyme Foundation encourages researchers to explore novel, scientifically well-founded concepts with potential utility toward that goal. Many ELA recipients have subsequently received grants from other groups including the NIH, as well as continued support from Bay Area Lyme Foundation. The efforts funded by this award are required to generate initial proof of concept within 12-24 months and requires applicants to demonstrate professional and scientific leadership in the biomedical sciences and a strong supporting scientific rationale. 

Ticktective with Dana Parish: The Misunderstood Infection That Is Wreaking Havoc

Ticktective™ with Dana Parish

Edward B. Breitschwerdt, DVM, DACVIM, PhD

Dr. Edward B. Breitschwerdt 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 Diplomate, American College of Veterinary Internal Medicine. Ticktective Video and Podcast Editor: Kiva Schweig.  Click here for this podcast transcript. 

Ticktective with Dana Parish: From Long Covid to Long Lyme: Persistent Infections Drive Chronic Illness

Ticktective™ with Dana Parish

Amy Proal, PhD

Microbiologist Amy Proal, PhD, serves as President/CEO of PolyBio Research Foundation and Chief Scientific Officer of the Long Covid Research Initiative (LCRI). Her work examines the molecular mechanisms by which viral, bacterial, and fungal pathogens dysregulate human gene expression, immunity, and metabolism. Ticktective Video and Podcast Editor: Kiva Schweig. Click here for this podcast transcript. 

Making a Contribution and Feeling Heard—One Lyme Patient’s Experience of Participating in the Lyme Disease Biobank

Lyme Disease Biobank Collection

BAL Spotlights Series

 

In June of this year, Lyme Disease Biobank (LDB), led by Principal Investigator Liz Horn, PhD, MBI, conducted sample collection days at our partner site, Gordon Medical Associates, in San Rafael, CA. During the two-day event, we took the opportunity to sit down and talk with participants, hear their Lyme disease stories, and learn what motivated them to donate blood and urine samples to LDB.

Sarah Reid’s Lyme story is not dissimilar to the stories of many Lyme patients in California. She never saw a tick; she never had a rash; and for a very long time—despite countless doctors’ appointments, interventions, tests, and hours of research—she had absolutely no diagnosis for her bewildering kaleidoscope of symptoms. When she finally received confirmation from lab tests ordered by Gordon Medical Associates that she indeed had Lyme and Bartonella, the news was a massive relief initially. She finally had answers. However, as the diagnosis sunk in, it sparked reflection on her lifelong health struggles and launched her into a new world of confusion, frustration, and decision-making as she learned to navigate and manage her Lyme.

Patient Participation is the Key to Research Gains

Biobank collection at Gordon Medical Associates

BAL Leading the Way Series

 

“With the lack of government initiative to make Lyme and tick-borne diseases easy to diagnose and simple to cure, it’s up to organizations like Bay Area Lyme and Lyme Disease Biobank to expand our understanding of tick-borne diseases.”  –Harrison S., LDB participant

“I participated in the Biobank program because I want to support legitimate science—it’s the compass pointing us in the direction that will lead to better diagnostics and therapeutics for Lyme patients. I am grateful that BAL is funding this critical research which is so sorely needed, and doing it expeditiously. It goes a long way to make up for the five decades of inaction by the CDC and HHS.”  – Rebecca W., LDB participant

Over three days in June, the Lyme Disease Biobank (LDB) welcomed participants to Gordon Medical Associates, our LDB collection site in San Rafael, CA. Persistent/chronic Lyme patients traveled from as far away as Sacramento, CA, and Reno, NV, to donate blood and urine samples to the Biobank. LDB, a program of Bay Area Lyme Foundation, was founded to ensure an adequate number of samples for researchers investigating Lyme and tick-borne diseases.

Bay Area Lyme Foundation Selects National Winners of the 2022 Emerging Leader Awards Aimed at Making Lyme Disease Easy to Diagnose and Simple to Cure

2021 Emerging Leader Awards

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Bay Area Lyme Foundation Selects National Winners of the 2022 Emerging Leader Awards Aimed at Making Lyme Disease Easy to Diagnose and Simple to Cure

Winners Nichole Pedowitz PhD, of Stanford University and Peter Gwynne PhD, of Tufts University will focus on developing novel diagnostic tests that can identify patients with Lyme disease

PORTOLA VALLEY, Calif., August 9, 2022—Bay Area Lyme Foundation, a leading sponsor of Lyme disease research in the US, announces the recipients of the 2022 Emerging Leader Awards (ELA), which are designed to support promising scientists who are advancing development of accurate and effective diagnostic tests. Both awardees this year are focused on diagnostics, which is particularly important as the current gold standard diagnostic test has been shown to be insensitive in up to 60% of early-stage disease. 

This year’s winners are Nichole Pedowitz, PhD, of Stanford University, who will receive $100,000 for her work to develop a new rapid diagnostic to directly test for the bacteria that causes Lyme disease and Peter Gwynne, PhD, of Tufts University, who will receive $100,000 to further identify antibodies which may be markers of persistent Lyme disease infection.

“The lack of a reliable test for Lyme disease makes it not only impossible to ensure that patients receive prompt, appropriate care but also challenging for scientists and clinicians to evaluate emerging treatments,” said Linda Giampa, executive director, Bay Area Lyme Foundation. “Our hope is that Drs. Pedowitz and Gwynne will make strides toward the development of diagnostic tests that will be effective in identifying Lyme patients at various stages of the disease.”