Growing rates of Lyme disease in the Hamptons and across the U.S. necessitate better diagnostics and treatments
East Hampton Family Medicine has announced a call to action aimed at accelerating medical breakthroughs for Lyme disease. People experiencing symptoms of early-stage Lyme disease are asked to donate a small sample of blood and fill out forms reporting their symptoms. These will become part of the Bay Area Lyme Foundation’s Lyme Disease Biobank, which provides biological samples to researchers exploring new diagnostics and potential treatments for this devastating disease. Patients will be offered a $50 Amazon gift card as a thank-you for their participation.
“Because Lyme disease is a large and growing problem here in the Hamptons, we knew we needed to be part of the solution,” said George P. Dempsey, MD, East Hampton Family Medicine, which has been pioneering medical research in a community setting since 2008. “In 2014, our East Hampton practice was the very first collection site in the US for the Lyme Disease Biobank, because we believed local people would be glad to participate in such an important effort in the battle against Lyme. And they certainly have, making us the first collection site and the largest contributor of samples to the biobank.”
“These small blood donations have gone a long way toward supporting researchers who are working to find solutions,” continued Dr. Dempsey.
In striving to develop and test better diagnostics for tick-borne diseases, researchers require verified blood, urine, and tissue samples to use in their studies. Lyme Disease Biobank is able to provide these verified samples thanks to the collections at East Hampton Family Medicine, among other locations across the country. When patients provide additional health information about their experiences with Lyme disease, this is very helpful to researchers as well.
“If researchers don’t have access to reliable blood samples that are connected to symptoms and other health information, they can’t build the necessary research projects to develop better diagnostics for this complex disease,” said Liz Horn, PhD, MBI, Principal Investigator, Lyme Disease Biobank.
Much research into tick-borne infections is needed, as current diagnostics are inaccurate for more than half of early-stage Lyme disease cases, and late-stage or persistent Lyme disease can become debilitating. In fact, the current standard diagnostic test for Lyme disease could not confirm the diagnosis of 71% of blood samples from individuals in endemic areas presenting with a Lyme rash, according to a study using samples collected by the Lyme Disease Biobank and published in the Journal of Clinical Microbiology.
Currently, more than 1,000 participants have been enrolled across multiple sites, and there are more than 65 research projects that rely on Lyme Disease Biobank samples. These include research efforts in academia as well as diagnostics companies, small biotech companies and non-profit research organizations. So far, five scientific papers have been published in the field of Lyme diagnostics and more are in development. A generous grant in 2016 enabled the biobank to expand to multiple sites across the country.
“We are making access to biological samples easier for investigators so that, together, we can move closer to understanding how humans’ immune systems respond to this infection and how we might develop tools to fight it,” added Dr. Dempsey.
“These samples, combined with the efforts of the tick-borne disease scientific community, have made progress in diagnostics for early detection of Lyme disease. Progress is also being made in other infectious diseases, with samples collected in East Hampton contributing to new diagnostic assays on COVID-19. Our collective understanding of tick-borne disease and the science of immunology increases with every volunteer who contributes.”
Anyone experiencing early-stage symptoms of Lyme disease is invited to call East Hampton Family Medicine (http://www.easthamptonfamilymedicine.com) at 631-324-9200 to get involved in the Biobank. Symptoms of early-stage Lyme disease include flu-like ailments, such as fever or chills, muscle and/or joint pain, headaches, fatigue and sometimes a skin rash, commonly—but not always—a circular or expanding bullseye rash that spreads from around the original bite area.
ABOUT LYME DISEASE: The most common vector-borne infectious disease in the country, Lyme disease is a potentially disabling infection caused by the Borrelia burgdorferi bacteria transmitted through the bite of an infected tick to people and pets. If caught early, most cases of Lyme disease can be effectively treated, but it is commonly misdiagnosed due to lack of awareness and unreliable diagnostic tests. According to the CDC, there are approximately 476,000 new cases of Lyme disease each year. As a result of the difficulty in diagnosing and treating Lyme disease, more than one million Americans may be suffering from the impact of its debilitating long-term symptoms and complications, according to Bay Area Lyme Foundation estimates.
ABOUT LYME DISEASE BIOBANK: The Lyme Disease Biobank (LDB), a program of the Bay Area Lyme Foundation, is a non-profit organization working to accelerate research of Lyme disease and other tick-borne infections. With a collection of biological samples from more than 1,000 participants, including serum, blood, urine and tissue, LDB provides much-needed samples to researchers working to better understand tick-borne diseases and develop improved tests and therapeutics. Blood and urine samples are collected from the Northeast, Upper Midwest and West Coast areas of the US, and tissue samples are collected throughout the country.
Healthcare providers looking to get involved, and patients interested in donating blood, urine or tissue samples can learn more here. Researchers interested in obtaining samples should visit www.lymebiobank.org or contact firstname.lastname@example.org.
ABOUT BAY AREA LYME FOUNDATION: Bay Area Lyme Foundation, a national organization committed to making Lyme disease easy to diagnose and simple to cure, is a leading public charity sponsor of innovative Lyme disease research in the country. A 501c3 non-profit organization based in Silicon Valley, Bay Area Lyme Foundation collaborates with world-class scientists and institutions to accelerate medical breakthroughs for Lyme disease. It is also dedicated to providing reliable, fact-based information so that prevention and the importance of early treatment are common knowledge. A pivotal donation from The LaureL STEM Fund covers overhead costs and allows for 100% of all donor contributions to Bay Area Lyme Foundation to go directly to research and prevention programs. For more information about Lyme disease or to get involved, visit www.bayarealyme.org or call us at 650-530-2439.
TIPS TO PREVENT TICK BITES FROM BAY AREA LYME FOUNDATION:
- Wear light-colored clothes. It’s easier to see ticks
- Walk in the center of the path when hiking. Avoid sitting in high grasses or on fallen logs.
- Consider using tick repellent. Use Lemon-eucalyptus oil or DEET as a tick repellent and apply permethrin insecticide to your clothes.
- Put clothes in a hot dryer for 10 minutes after being in woods
- Check common places to which ticks might latch-on – under the arms, in and around the ears, inside the belly button, behind the knees, between the legs, around the waist and especially in the hair. Check carefully and use a magnifying glass or smartphone magnifier as necessary.
- Redo tick checks 3 days after being in woods. If you’ve missed any ticks the first time around and they’ve had a chance to feed on you, they will be bigger and easier to spot
- Shower immediately after playing or hiking in tick-infested areas (showers can wash away hard to spot ticks that have not yet latched on or become engorged)
- And don’t forget to check any camping gear. Ticks often come into the house on a ride. Check coats and daypacks
- Consider DEET for skin and permethrin for your clothes. A single application of permethrin to your clothing can provide up to six weeks of protection, even after repeated washings