Bay Area Lyme Foundation Endorses First Recommendations of New HHS Working Group Focused on Tick-Borne Diseases

By Bay Area Lyme Foundation

FOR IMMEDIATE RELEASE

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

 

The Foundation encourages Congress to support the recommendations to fund efforts to increase scientific understanding of Lyme disease and other tick-borne infections

Portola Valley, Calif., November 14, 2018—Bay Area Lyme Foundation, a leading sponsor of Lyme disease research in the United States, offered their appreciation to the U.S. Department of Health and Human Services (HHS) in response to The Tick-Borne Disease Working Group’s recommendation for increased Federal investment focused on Lyme disease awareness, education, diagnosis and treatment. This Federal Advisory Committee was enshrined in the 21st Century Cures Act, after years of work by Lyme disease advocates and their congressional representatives to review the Federal Government’s activities on tick-borne disease.

“This document represents an important first step by the U.S. federal government to recognize the need to better address tick-borne diseases,” said Wendy Adams, Research Grant Director, Bay Area Lyme Foundation and Member, Tick-Borne Disease Working Group.  “These recommendations make the powerful point that significant increases in federal government funding for tick-borne disease research are required before we can truly diagnose and treat tick-borne infections.”

While there are nearly 10 times as many people diagnosed each year with Lyme than HIV in the U.S., Lyme disease receives approximately 1% of the public funding that is allocated for HIV/AIDS.

National Dog Day is Sunday August 26th — Keep your Pets Tick and Lyme Safe!

By Bay Area Lyme

Sunday, August 26th is NATIONAL DOG DAY and in honor of our furry four-legged friends, we wanted to share some tips and tactics for keeping you and your pet safe.

Lyme disease is on the rise — the geographic range and prevalence of Lyme-carrying ticks have expanded significantly in recent years, potentially due to climate change as well as many other factors. Here on the West Coast, temperate conditions mean that Lyme disease is almost a year-round (versus seasonal) threat.

Black-legged ticks prefer shaded, moist ground and leaf litter, but they can also be found clinging to tall grasses, brush, and shrubs. Ticks also inhabit gardens and lawns, particularly at the edge of wooded areas, around stone walls, and anywhere deer and white-footed mice (their most common animal hosts) might travel.

It is almost impossible to completely prevent an outdoor pet (or a human) from any tick encounters, there is simply too much exposure to natural tick habitats just outside our back doors. That being said, there are many simple things you can do to help reduce the risk of Lyme disease for you and your pet. Here we share some tips and some answers to the most commonly asked questions.

Citizen-Scientist Study is First to Find Ticks Capable of Carrying Lyme Disease in 83 U.S. Counties Where Previously Undetected

By Bay Area Lyme Foundation

FOR IMMEDIATE RELEASE

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

Citizen-Scientist Study is First to Find Ticks Capable of Carrying Lyme Disease in 83 U.S. Counties Where Previously Undetected

Study Validates Citizen Participation as Viable Method for Health Agencies to Evaluate Tick-borne Disease Risk

PORTOLA VALLEY, CA, July 12, 2018 — Bay Area Lyme Foundation, a leading nonprofit funder of innovative Lyme disease research in the U.S., today announced the results of the first citizen-scientist study to evaluate the prevalence of disease-carrying ticks throughout the United States. Conducted through a partnership with Northern Arizona University and Colorado State University and published in the peer-review journal PLOS ONE, the study is based on a massive sample of more than 16,000 ticks collected from 49 U.S. states and Puerto Rico. The study found ticks capable of carrying Lyme and other tick-borne diseases in 83 counties (in 24 states) where these ticks had not been previously recorded. The program received a six-fold increase in tick submissions over initial estimates, representing unprecedented national coordination of a ‘citizen science’ effort and diagnostic investigation.

“Identifying geographic patterns of tick-human contact provides valuable insight that may help public health officials, patients and physicians become more vigilant about Lyme disease, increasing early diagnosis,” stated Linda Giampa, executive director at Bay Area Lyme Foundation. “Based on these findings, it is critical that residents throughout the country take precautions and know the symptoms of tick-borne infections, even in areas where ticks have not previously been shown to cause disease.”

Bay Area Lyme Foundation Now Accepting Applications for $450,000 in Emerging Leader Award Research Grants

By Bay Area Lyme Foundation

FOR IMMEDIATE RELEASE

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

Bay Area Lyme Foundation Now Accepting Applications for $450,000 in Emerging Leader Award Research Grants

‘Emerging Leader Award’ aims to attract new scientific talent to address challenges of Lyme disease

Portola Valley, California, December 5, 2017—Bay Area Lyme Foundation, a leading sponsor of Lyme disease research in the US, today announced a call for applications for three Bay Area Lyme Foundation ‘Emerging Leader Award’ grants, one for $250,000 and the other two for $100,000. These awards will be given to promising scientists who embody the future of leadership in Lyme disease research in the US. The award recipients will be researchers in academia or the private sector who have demonstrated professional and scientific leadership in the biomedical sciences and who can offer scientific rationale for a research project that can advance diagnostics or treatments for Lyme disease.

Getting to the Heart of the Issue – Lyme Carditis: Why Early Diagnosis is Critical

By Bay Area Lyme

by Wendy Adams, Research Grant Director and Advisory Board Member, Bay Area Lyme Foundation

 

Recently, we’ve started to hear more about Lyme carditis as one potentially lethal manifestation of Lyme disease.  What exactly is it, why does it happen, and how does it cause disease?

What is Lyme Carditis?

First of all, a little Latin.  When you see the suffix “-itis”, it denotes inflammation – often caused by an infection.  So, carditis literally means inflammation of the heart.

When a Borrelia infection enters the body, we know from animal studies that it disseminates quickly.  It tries to find the tissues where it is most comfortable, and often that includes the heart.  Borrelia can infect all parts of the heart – the myocardium, the pericardium, and the endocardium, the cardiac muscle, the valves, and even the aorta itself.  The immune system senses the presence of the spirochete bacteria and induces inflammation, the first prong of the immune system’s response.

Summer Camp in Lyme Land

By Bay Area Lyme

Lia GaertnerThe following is a guest post by one of our esteemed Advisory Board members, Lia Gaertner. Lia is a scientist and also a Lyme patient who has turned her own frustrating experience with the disease into a personal mission to help create greater awareness and understanding about the illness. This year’s explosion in tick counts all over the country necessitates extra vigilance for all of us who enjoy the outdoors. Here, Lia shares some of her family’s precautions.

I am proud to serve as a member of the science team at the Bay Area Lyme Foundation (BAL).  As a survivor of two severe Lyme infections on both the East and West coasts of the USA, I know quite a bit about ticks and tick-borne infections. During my twelve-year struggle with Lyme and babesia infections, my physician husband and I had to educate ourselves about ticks and tick-borne infections by going to medical conferences, studying with doctors, reading scientific literature, and mostly by experimenting with dozens of tests and therapies (on me). Now, we both receive daily requests from desperate people who cannot find sufficient information on how to treat their tick bite or tick-borne infections.

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.

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.

——–

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.

Going Outside to Play with Abandon…

By Bay Area Lyme

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.”