Tick Borne Disease Archives

Lyme advocates weigh-in on research priorities at HHS-LymeX workshop

Kris Newby on June 8, 2021

Invisible’s Chief Medical Officer, Dr. Nevena Zubcevik, joins other Lyme patient advocates in setting priorities for the largest public-private research initiative launched since Lyme disease was discovered.

Last October, the Steven & Alexandra Cohen Foundation announced that they would donate $25 million to the LymeX Innovation Accelerator, a research prize competition to develop better tick-borne disease diagnostics. The competition recently entered its next phase, the collection of ideas from disease stakeholders — patient representatives, the government, academic medicine, and industry — to help define the prize guidelines.

To facilitate this process, the U.S. Department of Health and Human Services (HHS) hosted a LymeX Roundtable Webinar on April 28, 2021, which featured presentations and workshops with key stakeholders.

Dr. Nevena Zubcevik, Invisible’s Chief Medical Officer, was the workshop’s first lightning talk speaker, and in her presentation (starting at minute 37:43), she succinctly summarized why these prizes are so desperately needed: Only about 1 percent of the National Institutes of Health’s Lyme disease research budget (2015 thru 2019) went towards exploring better treatments for the nearly 500,000 Americans who get Lyme disease each year. Her emphatic message to the audience — We need more patient-focused solutions to bring relief to the millions suffering from tick-borne diseases today.

Invisible is working to remedy the treatment gap by launching the Tick Bytes Clinical Data Research Platform. This multi-institutional clinical data repository will provide quality de-identified tick-borne illness patient data to researchers. Researchers can then mine this data using advanced biostatistical methods to discover symptom profiles for mixed infections and treatment regimens that work. With this precision medicine approach, more quality evidence will reach physicians, insurers, and government. This, in turn, will improve diagnostics and treatment options, leading to better outcomes, insurance coverage, and government funding. Invisible is currently raising funds to launch 10 data collection sites at research institutions, community clinics, and hospitals across the nation. To learn more about how you can help, go to: https://invisible.international/give

The Cohen’s $25 million prize fund represents a whopping 50-percent boost to the 2021 NIH Lyme-related research budget, and, most importantly, it allocates more funds to urgently needed early diagnostic tools, since in the first three weeks after infection, the standard tests only detect Lyme disease 29 to 40 percent of the time.

For an overview of the devastating impact of poor testing and treatment options on Lyme patients, read the new LymeX publication, “The Health+ Lyme Disease Human-Centered Design.” To join the LymeX online community, go to: https://lymex.crowdicity.com/

Invisible International is a 501(c)(3) nonprofit foundation dedicated to reducing the suffering associated with invisible illnesses and social marginalization through innovation, education, and change projects. To donate or to learn more about our many programs to reduce the impact of tick-borne illness, visit the website: https://invisible.international

How LymeTV is crushing those evil ticks seeking world domination

Kris Newby on May 19, 2021

Tick bites woman. Woman bites back, by launching LymeTV, a media foundation that aims to end the ignorance surrounding tick-borne diseases.

While Adina Bercowicz was applying to graduate school, she began experiencing a variety of mysterious symptoms, including crushing fatigue, joint aches, and frequent mind-blowing headaches. She thought it would go away in a few days, but it didn’t. And for the next two years, she kept visiting doctors, searching for relief from her forever illness. Her symptoms progressed into debilitating chronic pain and a significant cognitive decline, so bad that she couldn’t even recognize her own car.

She had to put her education and life on hold. That is, until a Miami-based physician recognized that Adina’s symptoms were similar to those of her daughter who was suffering with Lyme disease. To explore that possibility, her medical team extracted spinal fluid and a pathologist discovered that it was teeming with Borrelia burgdorferi, the corkscrew-shaped, tick-borne bacterium that causes Lyme disease. It was direct evidence that she had Lyme encephalitis, brain inflammation that can cause memory and concentration issues, headache, mild depression, irritability, fatigue, or excessive daytime sleepiness.

But despite years of treatment, she couldn’t get better, and she ultimately ended up in the intensive care unit to undergo allergy desensitization to ceftriaxone, the best antibiotic for treating her brain infection. Around the same time, it was discovered that the tick or ticks that bit her had also transmitted other pathogens along with Lyme, including the Rocky Mountain spotted fever bacterium, and babesia and anaplasma, two microbes that infect human blood cells.

She was left aghast with the question, why did it take five years to figure this out and get treated? Although her treatment relieved many of her major symptoms, she was left with the permanent damage caused by years of an unchecked infection.

“A tick bite can kill you,” says Adina, to those who think that these diseases are easy to diagnose, treat, and cure.

Adina’s frustration with the medical community’s lack of knowledge about tick-borne diseases inspired her to start LymeTV.org. This foundation aims to educate physicians and the public on the latest tick-borne disease science through TV commercials, a documentary, community events, and prevention resources targeting school-aged children. Yan Zelener, PhD, with degrees from MIT and Columbia University, is LymeTV’s director of science and research and Adina’s husband.

LymeTV’s latest project, the Tick Jedi School Health Program, features a fun, interactive, educational cartoon that teaches kids about tick avoidance, tick checks, and Lyme disease basics. (The animation’s screenwriters have written episodes for Disney Channel and Disney—ABC Television Group, ensuring an age-appropriate learning experience.) Designed for children from five to twelve years old, the program also comes with prevention posters and workbooks that engage kids with fun educational activities.

This project was a top-five winner of the Invisible International 2020 Hackathon, which was focused on creating education and awareness around tick-borne illness. Hackathon funding is helping LymeTV with outreach to schools and summer camps.

Tick-borne illnesses like Lyme disease affect children more than any other age group, yet only about 1 in 10 check for ticks after playing outside. Lyme disease is the fastest growing vector-borne illness in the United States, with an estimated 476,000 new cases a year, according to the Centers for Disease Control. If ticks take a blood meal undetected, they can transmit other dangerous bacteria and viruses to humans and pets, including the Babesia parasite, the Rocky Mountain spotted fever bacterium, and the Powassan virus. Prevention through tick checks and avoidance is the best way to stay safe.

LymeTV is a 501(c)(3) a nonprofit foundation based in Portland, Maine, focused on reducing the incidence of dangerous tick-borne diseases. Learn more about the Tick Jedi program and try out their interactive cartoon here: https://tickjedi.com

Schools, camp, and other organizations can register here for the program’s complete set of educational resources.

Invisible International is a 501(c)(3) nonprofit foundation dedicated to reducing the suffering associated with invisible illnesses and social marginalization through innovation, education, and change projects, such as the Lovell family-sponsored Hackathon that helped fund the Tick Jedi program. To donate or to learn more about our many programs to reduce the impact of tick-borne illness, visit the website: https://invisible.international

Infectious new dance helps kids check for Lyme-infected ticks

Kris Newby on May 1, 2021

A children’s songwriting duo has created a catchy new dance-jingle that makes tick checks fun and easy, potentially reducing the incidence of dangerous tick-borne diseases in kids.

Tick-borne illnesses like Lyme disease affect children more than any other age group, yet only about 1 in 10 check for ticks after playing outside. To encourage kids to do more and better tick checks, comedic songwriters “Louis and Dan and the Invisible Band” created a “viral” song-and-dance routine to help kids remember to check for creepy-crawly ticks in their favorite hiding places.

Sponsors of this project, PA Lyme Resource Network and Invisible International, have also organized an educational campaign around the dance called the #TickCheckChallenge. (This project was developed for the Invisible International 2020 Hackathon, which was focused on creating education and awareness around tick-borne illness.) To help spread the word about the importance of tick checks, they’re encouraging people to record their own TikTok-style interpretations of the dance, then share them on social media, following the instructions at https://palyme.org/tick-check-challenge/

Lyme disease is the fastest growing vector-borne illness in the United States, with an estimated 476,000 new cases a year, according to the Centers for Disease Control. If ticks take a blood meal undetected, they can transmit other dangerous bacteria and viruses to humans and their pets, including the Babesia parasite, Rocky Mountain spotted fever, and the Powassan virus. Initial symptoms are often hard to detect, mimicking those of the flu or Covid-19 — fever, chills, headache, and aches. Prevention through tick checks is the best way to stay safe.

PA Lyme Resource Network is a 501(c)(3) nonprofit foundation with a mission to reduce the suffering of Lyme and tick-borne disease patients via education, prevention, patient support, and advocacy. Their signature “Dare 2B Tick Aware Program” has provided 300+ tick education seminars to date, as well as an informative suite of prevention materials made available to the public.

Invisible International is a 501(c)(3) nonprofit foundation dedicated to reducing the suffering associated with invisible illnesses and social marginalization through innovation, education, and change projects, such as the Lovell family Hackathon that funded the Tick Check Challenge. To donate or to learn more about our many programs to reduce the impact of tick-borne illness, visit the website: https://invisible.international

How to post your videos:

Learn how to create your own video here: https://palyme.org/tick-check-challenge/

Post your video to your social media channels, tagging three friends, and put #TickCheckChallenge on every post so that we can share your efforts to raise awareness.

To listen to more health-education songs by Louis & Dan and the Invisible Band, go to www.louisdaninvisibleband.com.

Image: kohei_hara @iStock, Video: Chris Flicek

Free online medical education course on early Lyme disease

Kris Newby on April 21, 2021

Three patient case studies guide physicians on how to diagnose and treat early Lyme disease. This online course summarizes the latest research on disease risk, symptoms, and treatment options.

Diagnosing early Lyme disease cases can be notoriously difficult. Initial symptoms mimic those of the flu or Covid-19 — fever, chills, headache, and aches. The recommended antibody testing isn’t reliable in the first month. And many of those infected by a tick never see the tick or the most helpful diagnostic sign — an expanding erythema migrans rash at the bite site.

In the meantime, it’s more important than ever for physicians to keep up with clinically relevant information that will enhance their Lyme disease diagnostic and case management skills. Lyme disease is the fastest vector-borne illness in the United States, with an estimated 476,000 new cases a year, according to the Centers for Disease Control. Approximately 10 to 20% of those treated with antibiotics go on to experience disabling long-haul symptoms, such as severe fatigue, joint/muscle pain, brain fog, and neurologic symptoms. Prompt diagnosis and treatment of early Lyme disease results in better outcomes.

“Case studies in early Lyme disease” is an online continuing medical education course that discusses disease risk in geographic regions, Lyme disease rashes, NIH-funded treatment trials, the basics on how Lyme bacteria evade the immune system, and the pros and cons of various patient treatment options. Participants’ diagnostic skills are tested with three real-life patient case studies. This course has been approved for 1.0 CME credit by the American Academy of Family Physicians.

Elizabeth L. Maloney, MD, the course’s author, is a Minnesota family physician focused on tick-borne disease education and policy. She is also the education director of Invisible International; the founder/president of the Partnership for Tick-borne Diseases Education; a former subcommittee member of the HHS Tick-borne Diseases Working group; and a peer reviewer for the Canadian Institutes of Health Research.

This project was funded by the Montecalvo Platform for Tick-Borne Illness Education, through Invisible International, a 501(c)(3) nonprofit foundation dedicated to reducing the suffering associated with invisible illnesses and social marginalization through innovation, education, and data-driven change projects. You can sign up to receive news and updates at https://invisible.international/newsletter

Image credit: Tricia Shears 2009, Lyme rash on a 5-yr-old