Participating in Clinical Research: Another Treatment Alternative?

Lyme disease, particularly with chronic or late-stage symptoms, can be a horribly frustrating and debilitating illness. Symptoms can persist despite complicated treatment regimens; therapies that seem successful at first may become less effective over time; and medications that work for some appear to have no effect for others. Add to that the high cost of treatment, the complicating challenges of co-infections, and insufficient insurance coverage for both traditional and alternative treatment, and it quickly becomes apparent why clinical studies offer potential for patients who are still suffering.

For many patients, the promise of participating in a clinical trial is not just the hope for new discoveries but a more immediate opportunity to access treatment options they may not otherwise be able to secure or afford. But is clinical research the “holy grail” for these patients who are seeking another option? What are the pros and cons of clinical research? What do you need to know?

Teaching the Teachers: Spreading the Word about Lyme Disease

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

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.

It’s All In Your Head. …Or is it? A Physician’s Perspective

It’s All In Your Head. …Or is it?
A Physician’s Perspective

Guest post: Dr. Elena Frid, MD

This week, we feature a guest post from Dr. Elena Frid, a board-certified NYC neurologist and specialist in Lyme disease and other vector-borne diseases. Dr. Frid has been recognized by her peers and patients for her innovative diagnostic methods and treatment regiments for a wide array of complex neuro-Lyme manifestations which often mimic other illnesses including multiple sclerosis (MS), Attention Deficit Hyperactivity Disorder (ADHD), various learning disabilities, Autism, Arthritis, Lupus, Alzheimer’s, Dementia, Parkinsons, anxiety/depression, intractable headaches, dizziness, insomnia, obsessive-compulsive disorder (OCD) behavior, ticks and many more. Here, she shares her perspective on the complexities of treating these complex illnesses.

Over the years, I have seen numerous patients who complain of many neurologic and psychiatric conditions. Often, when a patient complains of more than one or two problems, many physicians can get overwhelmed. It is difficult to treat a patient who seems to have a multitude of problems that, at first glance, may not appear to be related. Part of the issue is that medicine is moving in the direction of treating symptoms, and not the underlying cause of the problem.

Going Outside to Play with Abandon…

Processed with VSCO with a6 presetSharane Dorrah is on a mission …  A passionate hiker, mountain biker, skier, and general outdoors enthusiast who suffered years of debilitating illness due to the unfortunate bite of a Lyme-infected tick, Sharane is determined to ensure that the rest of the world avoid her nightmare through greater awareness and protection.

The company she launched this past year, Peskys, offers fashionable performance activewear instilled with an EPA-approved insect repellent to ward off a wide range of “pesky” bugs that can carry serious diseases.  Sharane explains, “Sounds dramatic, I know… [but] I’m on a mission to save lives by giving a fashionable option for protection against bites from those pesky bugs that can carry not only Lyme, but also Zika, West Nile, and all those other ‘bug diseases.’ I’m opening my big mouth and creating awareness. And I’m donating protective clothing and other items to children because they are the most at risk for some of these diseases.”

Sharane’s tactics are intriguing. Certainly the spread and the number of serious diseases like Lyme, Zika, and West Nile have forced the issue into the minds of more people; and yet, apprehension or lack of enthusiasm about the preventive tools available — such as chemical sprays, seemingly excessive coverup or avoidance tactics, etc. — mean that far too many of us who love the outdoors remain at risk. Enter this new concept: “performance apparel reinvented into sophisticated style options that meet the demands of day-to-day urban and outdoor active living. Pesky’s insect repellent apparel options perform equally well on the hiking trail as they do pool-side, at the farmer’s market, or in the backyard. They’ll ward off the worst of the season’s mosquitoes and ticks, but they do it without sacrificing style.”

Tick Saliva and Borrelia Spirochetes: A Novel Approach to Lyme Diagnostics

grasperge_rev_lores-250-x-250Bay Area Lyme recognizes some of the most promising research projects and scientists in the field of Lyme Disease for its annual Emerging Leader Award. These scientists and project teams come from leading research institutions all over the country and are focused on some of the more innovative approaches to developing new diagnostics and treatments for this insidious disease. The award comes with $100,000 of project funding to help bring their research to the next stage of completion or proof-of-concept.

Here, we talked with one of this year’s winners, Britton Grasperge, DVM, PhD, DACVP, Assistant Professor at Louisiana State University in Baton Rouge, LA, as he discusses his novel approach to Lyme diagnostics and also what it’s like to connect the work that’s done in the lab to the very real stories of the human patients suffering through the disease. He was the recipient of the Alexandra Cohen Emerging Leader Award. Dr. Grasperge’s project is entitled “Identification of Tick Chemoattractant(s) for Borrelia burgdorferi.” The goal, he explains, is to design better diagnostics and to improve therapeutics for post-treatment Lyme disease patients who continue to have lingering symptoms even after having been treated. 

CRISPR Technology: A New Approach to Eradicating Borrelia

courtesy Beisel Lab, NCSUDr. Chase Beisel is an Assistant Professor at North Carolina State University who was recognized earlier this year with one of Bay Area Lyme Foundation’s prestigious Emerging Leader Awards. This honor is in recognition of and support for his lab‘s novel work exploring CRISPR technology as a potential treatment for Lyme infections.

Dr. Beisel’s work integrates molecular biology, chemical engineering, and mathematical modeling and has been acknowledged with several National Science Foundation (NSF),  National Institute for Health (NIH) and other important awards. His foray into the field of Lyme is a new direction for his lab and ties directly to the Foundation’s aim of attracting some of the brightest and best minds in the country to apply innovative new approaches and methodology to accelerate the development of new diagnostics and treatments for Lyme disease. We are excited about his work and asked him to elaborate further in this recent conversation.

Had a Good Day? Call in Sick.

jordan-fisher-smith_312Wednesday evening September 14th, Jordan Fisher Smith, Lyme patient, former National Park Service (NPS) ranger and US Forest Service firefighter, narrator of the Lyme documentary Under Our Skin, freelance writer, and author of bestselling books, Nature Noir: A Park Ranger’s Patrol in the Sierra and Engineering Eden: The True Story of a Violent Death, a Trial, and the Fight Over Controlling Nature, was the latest to grace the Bay Area Lyme stage as part of the Distinguished Speaker Series. This free public series features noted scientists, health professionals, and Lyme advocates in intimate salon-style settings, where audience members can ask questions and get answers about the latest in Lyme disease research, treatments, and policy news. And sometimes, it’s just about sharing stories and insights.

This week’s presentation was just that — a moving discussion of Jordan’s personal experience and reflections battling Lyme disease, what he describes as the toughest 9 1/2 years and biggest struggle of his life (and this from a man who nearly lost his life during blizzard conditions on the top of Mt. Shasta!).

Ticks, Ticks, and More Ticks!

A Conversation with Dr. Nate Nieto, Northern Arizona University and Head of the Free Tick Testing Program


Nate Nieto_312Just six months ago, Bay Area Lyme launched a free Tick Testing Program through a partnership with Nate Nieto, PhD, Assistant Professor, Department of Biological Sciences at Northern Arizona University, and his lab.

The lab accept ticks from any state in the US and ticks are tested for several bacterial infections. The goal is to learn more about the ecological distribution of the major tick vectors and the prevalence of tick-borne pathogens that people encounter in different locations around the country ultimately to improve both prevention and diagnostic measures.

The initial response to this program far exceeded any anticipations — thousands of ticks poured in from all over the nation! Here, we sat down with Dr. Nieto to talk about what he has seen in these first few months and how the program will continue to grow and evolve. 

For more information about how to submit a sample, please refer to the Tick Testing page.

Bay Area Lyme Foundation Announces Finalists of “Lyme Innovation” Hackathon

FOR IMMEDIATE RELEASE

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

Bay Area Lyme Foundation Announces Finalists of “Lyme Innovation” Hackathon

Event brings together research from other therapeutic areas and disciplines to collaborate in development of solutions

Cambridge, MA, June 24, 2016 – Bay Area Lyme Foundation, collaborating with the Spaulding Rehabilitation Network’s Dean Center for Tick Borne Illness, Harvard Medical School Department of Physical Medicine and Rehabilitation, MIT Hacking Medicine, University of California, Berkeley, and the Veterans Affairs Center for Innovation, today announced the five finalists of Lyme Innovation, the first ever Hackathon for Lyme disease.  More than 100 scientists, clinicians, researchers, entrepreneurs, and investors from several US states registered for this event to brainstorm solutions for Lyme disease, a potentially devastating condition newly infecting 329,000 people each year.

“Collaboration is the key to solving the myriad of challenges of Lyme disease, and we were excited to have the participation of so many researchers new to Lyme research,” said Wendy Adams, Science Committee, Bay Area Lyme Foundation.  “It has been exciting to see such a wide range of expertise and enthusiasm come together to focus on solutions for this serious disease.”

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