The Challenges of Lyme Disease Reporting: Critical Consequences for California

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

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.”

Bay Area Lyme Foundation Announces Winners of “Lyme Innovation” Hackathon at White House Event

FOR IMMEDIATE RELEASE

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

Bay Area Lyme Foundation Announces Winners of “Lyme Innovation” Hackathon at White House Event

White House Acknowledges Contributions of Program Organizers
Toward Solving Challenges of Lyme Disease

(Cambridge, MA,) October 5, 2016 — As part of the White House Open Data Innovation Summit, 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, announces the winning teams of Lyme Innovation.  Lyme Innovation is the first ever Hackathon for Lyme disease, which provided a forum for more than 100 scientists, clinicians, researchers, entrepreneurs, and investors from a variety of disciplines to brainstorm solutions for this potentially devastating disease.

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

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!

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.”

Pets and People: More than Companions

Michael Yabsley with petThe following is a post from a guest author, Dr. Michael J. Yabsley, MS, PhD, Associate Professor, Department of Population Health at the College of Veterinary Medicine, University of Georgia and Board of Directors, Companion Animal Parasite Council.

He shares some important observations on the relationship between our pets and their people, especially in the context of vector-borne pathogens like Lyme disease.

Pets are our companions. They share our lives, our homes and our family time. We often share the mutual love of activities such as hiking or simply playing fetch in the backyard. While companionship is clearly why we have pets, our bond with them is often far greater than we appreciate — we share the same environment and more often than not, the same health concerns. At the top of this list are several vector-borne diseases.

Beware the Questing Tick!

May is Lyme Awareness month. And it is indeed time to be aware. Thanks to El Niño, it’s a wetter Spring than we’ve had in several years. That means we have lots of green grass, damp leaf litter, and overgrown trails and paths. It also means the ticks are out. And early spring means nymph season — these nymphs are young ticks, not much bigger than a poppy seed … the kind that are easy to miss with a quick glance.

Anna Perez This photograph depicts a deer tick, or blacklegged tick, Ixodes scapularis, as it was questing on a blade of grass.The Lyme disease bacterium, Borrelia burgdorferi, is spread through the bite of infected ticks. The blacklegged tick (or deer tick, Ixodes scapularis) spreads the disease in the northeastern, mid-Atlantic, and north-central United States, and the western blacklegged tick, Ixodes pacificus, spreads the disease on the Pacific Coast. Ticks can attach to any part of the human body but are often found in hard-to-see areas such as the groin, armpits, and scalp. In most cases, the tick must be attached for 36-48 hours or more before the Lyme disease bacterium can be transmitted.Most humans are infected through the bites of immature ticks called nymphs. Nymphs are tiny (less than 2mm) and difficult to see; they feed during the spring and summer months. Adult ticks can also transmit Lyme disease bacteria, but they are much larger and may be more likely to be discovered and removed before they have had time to transmit the bacteria. Adult Ixodes ticks are most active during the cooler months of the year.
Adult Ixodes tick questing. Photo by Anna Perez, courtesy of CDC (Centers for Disease Control and Prevention)

The good news is that ticks can’t fly, jump, or even run. But they do “quest” — they hang out on leaves, blades of grass, and branches, tiny legs poised to grab onto a warm body passing by. Ticks need to feed in order to progress to the next life stage and perching ready to grab a free ride (and meal!) on an unwitting passerby is how they ensure their survival.

When hiking or biking in the woods, if you keep to the center of the trail and avoid bushwhacking and brushing up against high grasses or other vegetation, your risk of picking up a parasitic passenger is pretty low. Once you leave the trail for a pit stop, however, the risk rises exponentially. Ticks are carried by deer and other small mammals that also like to use the trails so the highest concentration of ticks is often close to trails.