The Challenges of Lyme Disease Reporting: Critical Consequences for California

By Bay Area Lyme

Wendy AdamsLyme disease is a nationally notifiable disease, recognized and tracked by the federal government Centers for Disease Control and Prevention (CDC) for surveillance purposes. Surveillance data provides important information for assessing public health risks and allocating research dollars. Per the CDC, “The goal of Lyme disease surveillance is not to capture every case, but to systematically gather and analyze public health data in a way that enables public health officials to look for trends and take actions to reduce disease and improve public health.” However, these statistics have important implications for individual patients as well.

In this post, Bay Area Lyme Research Grant Director and Advisory Board Member Wendy Adams discusses some important changes to the CDC definitions of Lyme disease and some concerning implications for patients in the state of California.

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In January, the Centers for Disease Control and Prevention (CDC) in Atlanta published an updated Lyme Disease (Borrelia burgdorferi) 2017 Case Definition. Lyme disease case definitions have been published since 1995, and the previous definition was published in 2011. The CDC actually is not responsible for this definition; instead it is the Council of State and Territorial Epidemiologists (CSTE) that is responsible for Lyme disease surveillance.  Each state has its own State Epidemiologist (see info about CA here). Despite being a federal agency, the CDC can offer input on these definitions but the CSTE is not obligated to accept those suggestions.

The case definition for Lyme disease is only intended to be used to determine cases for surveillance purposes and not to represent the full incidence of Lyme in a given area.  However, this subtlety is often confusing for doctors who see these low case numbers as proof that they do not need to consider a Lyme diagnosis in CA.  The low numbers also are convenient for insurance companies who inappropriately use this narrow definition as diagnostic criteria to deny coverage for patients whose cases don’t meet the definition.

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

By Bay Area Lyme

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.

Lyme Disease and Disability Benefits

By Bay Area Lyme

Following on our story about financial resources for Lyme patients, we received this submission from Eric Minghella, an Outreach Coordinator for the Disability Benefits Help Center, offering to help clarify the process of applying for coverage.

“I came across the Bay Area Lyme Foundation this morning and I was so impressed by the work you do for people who have been affected by Lyme Disease. The resources and awareness you provide for families in need are so valuable and very much needed. I was wondering if I could contribute to the Bay Area Lyme Foundation by writing an article on applying for Social Security benefits with Lyme Disease. I work for Disability benefits help and I know that the process can be very confusing.”

As many know, treatment for and recovery from Lyme disease can be a long and costly process for those who suffer chronic symptoms. Applying for financial support can be a perplexing and tiresome endeavor,  however, there are resources to assist you and you may find answers here.

New National Lyme Disease Biobank Aims to Accelerate Lyme Disease Research by Making Lyme Patient Samples From the East Coast, West Coast and Midwest Available to Researchers

By Bay Area Lyme Foundation

FOR IMMEDIATE RELEASE

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

New National Lyme Disease Biobank Aims to Accelerate Lyme Disease Research by Making Lyme Patient Samples From the East Coast, West Coast, and Midwest Available to Researchers 

Qualified researchers now have one-stop access to patient samples from Long Island, San Francisco Bay Area, Martha’s Vineyard, and Marshfield, Wisc.

Portola Valley, Calif., January 24, 2017 – Bay Area Lyme Foundation, a national organization funding research to make Lyme disease easy to diagnose and simple to cure, announces the launch of the Lyme Disease Biobank, which is the first program to provide researchers with blood and urine samples from people with acute Lyme disease from multiple regions across the country, including the East Coast, West Coast and Upper Midwest.

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.

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

By Bay Area Lyme

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. 

New Pathogen Discovered By Researchers Who Discovered Lyme – But Was Not Reported

By Bay Area Lyme Foundation

FOR IMMEDIATE RELEASE

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

New Pathogen Discovered By Researchers Who Discovered Lyme – But Was Not Reported

Bay Area Lyme Foundation Responds to News Related to Initial Studies of Lyme Disease

Portola Valley, CA, October 12, 2016 – Bay Area Lyme Foundation, an organization dedicated to making Lyme disease easy to diagnose and simple to cure, is deeply disturbed by the news that researchers involved in the initial discoveries of Lyme disease omitted critical information related to additional bacteria that may have contributed to illness in early cases. This information was revealed in a story today in STAT News titled “The ‘Swiss Agent’: Long forgotten research unearths new mystery about Lyme disease.”

This new development clearly points to a critical need to reexamine much of the current orthodoxy in Lyme disease.

Bay Area Lyme Foundation Increases Annual ‘Emerging Leader Award’ Grants to $350,000 for Lyme Disease Research

By Bay Area Lyme Foundation

FOR IMMEDIATE RELEASE

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

Bay Area Lyme Foundation Increases Annual ‘Emerging Leader Award’ Grants to $350,000 for Lyme Disease Research

2017 additional award invites applications from Associate Professors through Full Professors

Silicon Valley, California, October 3, 2016 – Bay Area Lyme Foundation, supporter of research aimed at making Lyme disease easy to diagnose and simple to cure, announced today that it is beginning to accept applications for a new $250,000 grant award that has been added to its existing “Emerging Leader Award” portfolio of yearly funding.  Made available to researchers through the generosity of the Steven and Alexandra Cohen Foundation and the Laurel Foundation, the portfolio also includes the $100,000 “Emerging Leader Award” which has previously been granted to researchers from Harvard, Stanford, UCSF, NC State and Louisiana State University.

Ticks, Ticks, and More Ticks!

By Bay Area Lyme

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

By Bay Area Lyme Foundation

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.”