Lyme stories Archives - Bay Area Lyme Foundation

Dana Parish’s Personal Odyssey: Her Quest for the Right Diagnosis and Treatment of Lyme Disease

By Bay Area Lyme Foundation

BAL Spotlights Series

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.

Gain Strength and Inspiration through the SDLA Empowerment Circle

By Bay Area Lyme Foundation

Written by: Christina P. Kantzavelos

Driven by a desire to create a centralized resource and supportive community for those impacted by Lyme and tick-borne disease, the San Diego Lyme Alliance (SDLA) was formed as an affiliate of the Bay Area Lyme Foundation in 2019. The challenges of navigating Lyme disease are vast and need not be faced alone. So following in the footsteps of past and existing local Lyme support groups, SDLA established three regional “Circle of Support” group meetings in Carlsbad, Scripps Ranch and La Jolla. Creating this safe space for open dialogue enabled Lyme patients, family and caregivers to build meaningful connections, feel supported and stay informed.

In March 2020, life changed abruptly. COVID-19 demonstrated the importance of human communication and connectedness, with a rise in feelings of isolation, depression and anxiety. While the pandemic presented the challenges of isolation, it also provided the opportunity to explore new ways of interacting and building meaningful connections. Quick to adapt to the online virtual world via Zoom, the “Empowerment Circle” (EC) was born in June 2020. Initially facilitated by Mark Guay, Christina P. Kantzavelos and Patricia Cosulich have joined as co-facilitators to round out the EC Team. Over time our group has brought together participants from San Diego and beyond, including San Francisco, the east coast, and even Canada. The pandemic presented an unexpected opportunity to bring people together more effectively, transcending time, geographical separation and physical limitations.

Laure Woods: Empowering Women in Science

By Bay Area Lyme Foundation

Laure Woods (Photo – Drew Altizer Photography)

“Empowering Women in Science” featuring Laure Woods, Class of ’80

from the Santa Catalina Spring/Summer Bulletin 2020

After obtaining a B.S. in Animal Science from UC Davis, Laure Woods ’80 went on to a career in clinical research, working with pharmaceutical companies such as Matrix Pharmaceutical and Genelabs Technologies. She also founded her own consulting business to advise companies that test the safety and efficacy of medications, devices, diagnostic products, and treatment regimens intended for human use. Laure also formed a private foundation focused on the education, health, and welfare of children, and founded the LaureL STEM Fund, which led to her work with Santa Catalina’s robotics team.

HOW DID YOU HELP START THE PROJECT AT SANTA CATALINA? In 2017, I contacted the school with my desire to help fund an all-girls robotics team. This decision was driven by my experience at the FIRST Robotics competitions I attended with my daughter’s team. There were more boys than girls and one or no all-girls teams at the competitions. So of course I contacted my alma mater! I was so excited to learn that a group of students, led by Madison Gong ’18, had already formed a team and were using a room for their robotics lab in the Sister Claire and Sister Christine Mathematics and Science Center. I had recently started the LaureL STEM Fund as part of my family foundation, and one of our goals is to create more opportunities for young women in STEM. We were excited to partner with the Catalina robotics team—entirely driven by students.

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.

Evaluating the Success of Hyperthermia Treatment in Chronic Lyme Disease

By Bay Area Lyme

Guest Post from
Michelle McKeon, MS
President, Lyme and Cancer Services

Bay Area Lyme is happy to share the editorial contributions of care providers, patients, caregivers, and others in the community who are eager to share their knowledge for the benefit of others suffering from Lyme and related tick-borne illnesses. There is still so much we don’t know and so much we are just learning. It is critical that we keep an active dialogue and share and collaborate to continue to move our understanding forward. What follows is an article written by a guest contributor and practicing care provider who shares that view and her personal and professional experience in hopes that it can help others with their healing journeys.

In Search of a Cure for Lyme Disease: The Disulfiram Story

By Bay Area Lyme Foundation

– Bonnie Crater, founder and vice-chair of the Board of Directors, Bay Area Lyme Foundation

What does an anti-alcoholism drug have to do with Lyme disease? Nothing—until a 2016 study funded by Bay Area Lyme Foundation found a link. From around 2014 through 2017, two labs on opposite coasts—one at Johns Hopkins University and one at Stanford—were testing thousands of FDA-approved drugs to identify an existing drug that worked against “persister” forms of Borrelia burgdorferi (Bb), the bacteria that causes Lyme disease(1,2,3,4). Why were they doing this?

Here’s a little background. Borrelia burgdorferi, a spirochete, when cultured in a lab has roughly 3 different forms: a) a culture with predominantly long or corkscrew forms, b) a culture with predominantly round forms and some microcolonies, and c) a culture with predominantly microcolonies (2). Most laboratory studies regarding the effectiveness of antibiotics are conducted in cultures on long forms. In this long form, the spirochete is motile and can divide (although very slowly) and consequently, some antibiotics work much better on the long form. However, after exposure to antibiotics such as doxycycline, the spirochete curls up into a round form and some clump together with other spirochetes to form a few microcolonies. These round-body and microcolony forms are understood to be a defensive posture for the bacteria.

Why Is Lyme Disease Not Covered by Insurance?

By Bay Area Lyme

by Daniel Lynch, Founder & President, Medical Bill Gurus

This week, we have a guest post from Daniel Lynch. Daniel Lynch is the founder of Medical Bill Gurus, a patient and physician advocacy company that specializes in navigating the complex issues associated with healthcare and medical bills. His mission, he explains is to “utilize our wealth of information to ‘pay it forward’ to those who need assistance! … Although most claims for Lyme disease are typically at cash-only medical providers and not covered by insurance companies, we at Medical Bill Gurus have put together a process of breaking down bills, and identifying components of treatment that are covered by PPO insurance plans.”

Here he shares his perspective and some tips. Bay Area Lyme Foundation has no connection with Medical Bill Gurus and this post is not an endorsement of their services. At Bay Area Lyme, we are committed to supporting the community by ensuring access to information and resources to help them deal with Lyme disease.

Teaching the Teachers: Spreading the Word about Lyme Disease

By Bay Area Lyme

Bay Area Lyme at 2017 Association of Environmental and Outdoor Educators Annual Conference in La Honda, CA

Spreading awareness about Lyme and tick-borne infections among high-risk groups has been a key objective for our growing education outreach program at Bay Area Lyme Foundation and the Association for Environmental and Outdoor Educators (AEOE) has been part of our overall education outreach strategy. For the last three years, Bay Area Lyme has attended AEOE’s annual spring conference, raising awareness about Lyme and teaching professional naturalists, outdoor educators, and science teachers how to protect both themselves and the children they serve against Lyme and other tick-borne diseases.

Treating Lyme Disease: A Functional and Integrative Medicine Approach

By Bay Area Lyme

On Wednesday, March 8, Dr. Sunjya Schweig and his wife, Lia Gaertner, together gave a deeply affecting and informative presentation sharing their personal and professional experiences with Lyme disease. The talk was part of the ongoing Distinguished Speaker Series. What follows is a synopsis of some of the highlights.

*Lia Gaertner sharing her story with a full room at the speaker series event in Berkeley, CA.*

Lia Gaertner, a member of the Bay Area Lyme Foundation Science Committee, and Dr. Schweig, who is on the foundation’s Advisory Board, bring a wealth of professional expertise and knowledge to the table. But their story starts on a personal note, for it was just one month after Dr. Schweig started working in private practice that Lia — after 10 years of battling serious illness, unexplained symptoms, and debilitating physical and mental challenges — was finally diagnosed with Lyme disease. Together, the couple took what they describe wryly as a “rapid descent together down a rabbit hole” – a deep dive into Lyme, trying to learn as much as possible for their survival.

Bay Area Lyme Foundation Highlights Growth of Scientific Lyme Community in 2016

By Bay Area Lyme Foundation

FOR IMMEDIATE RELEASE

Media Contact:
Tara DiMilia, 908-947-0500, tara.dimilia@TMstrat.com

Bay Area Lyme Foundation Highlights Growth of Scientific Lyme Community in 2016

Foundation demonstrates recruitment of new scientific talent through innovative programs

SILICON VALLEY, Calif., November 28, 2016—Bay Area Lyme Foundation, a leading public nonprofit funder of Lyme disease research in the US, today announced that the organization granted $1.75 million in 2016 for Lyme research and education. Over the year, the Foundation continued to demonstrate success in bringing new scientific talent to the fight against tick-borne diseases. The organization highlights the recipients of the 2016 grant cycle, outlines the benefits of the Foundation’s contributions to Lyme Innovation, and announces their national Lyme Disease Biobank.