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LDA NEWS & UPDATES
May 31, 2024
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Virtual - June 4th - 10th, 2024
DrTalks is proud to announce the upcoming Healing from Lyme Disease Summit in a significant stride toward combating tick-borne illnesses. This free virtual event, happening from June 4 to 10, 2024, invites individuals affected by these debilitating diseases to embark on a journey of hope and healing. It aims to educate attendees on the various treatment options available beyond the conventional approach.
For more information about the summit and to register, please visit: https://drtalks.com/lyme-summit-2024/
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This May Awareness Guest Blog delves into the intricacies of Lyme disease with Kenneth Liegner, MD, a Board Certified Internist with specialized training in Pathology and Critical Care Medicine. In this interview, Dr. Liegner shares his journey into the world of Lyme disease, its evolving treatment, and his ongoing efforts to improve diagnostic methods and therapeutic solutions. He discusses the critical role of thinking holistically, patient advocacy, and the importance of organizations such as the Lyme Disease Association, Inc. in raising awareness and funding research. Dr. Liegner offers valuable insights and reflections on tackling one of the most challenging and misunderstood diseases of our time. Read more. | |
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In this May Awareness Guest Blog, we share an interview with Richard Horowitz, MD, Medical Director of the Hudson Valley Healing Arts Center. As a board-certified internal medicine specialist and a key member of various tick-borne disease working groups, Dr. Horowitz has dedicated his work to understanding and treating Lyme disease and other tick-borne illnesses. His experience spans from the early days of Lyme research in the 1990s to current advancements. Dr. Horowitz shares with us his journey into the field, the evolution of Lyme disease treatment, and his hope for finally finding a solution for chronic infections. This interview delves into his motivations, breakthroughs, and the critical role of compassion in patient care. Read on to discover Dr. Horowitz’s invaluable insights driven by scientific innovation and heartfelt advocacy. Read more. | |
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The impact of the Lyme Disease Association, Inc. (LDA) has been instrumental to the Lyme Association of Greater Kansas City since 1993. We could not continue to function without their generosity of funds to assist us along the way.
We are grateful for the ability to promote our monthly support group meetings, monthly newsletters, promote billboards during May Lyme Awareness, participate in several physician conferences in our area each year that reach a multitude of doctors as well as other vendors who didn’t know much about Lyme disease, and to purchase materials for compiling tick kit removers for our audience whether they be in the Midwest or any other regions of the nation. The LDA supplies us with wonderful brochures to educate those with so many questions about their health. We provide these brochures–full of facts and helpful information on Lyme disease–to our own physicians, nurses, school administrators, and include them in our general public packets. Read more.
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Judy Campbell, President, Lyme Association of Greater Kansas City
Go to the Blog.
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(L) Luke Mears, LDAP Co-Founder, (C) Stella Boswell, Assistant Dean of Public Interest and Pro Bono; (R) Madison Pinckney, LDAP Co-Founder
Go to the Blog.
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In the summer of 2022, the Duke Law Lyme Disease Advocacy Project gained recognition as a formally recognized pro bono group within Duke University School of Law. Madison Pinckney and Luke Mears, who are now third year law students, founded the group as first year students. They wanted to help the Lyme disease community and provide with students with opportunities to work on legal, legislative, and advocacy questions centering around Lyme disease. The group partnered with the Lyme Disease Association and began researching and answering questions surrounding Lyme disease advocacy that have gone unanswered for years.
Read the May 2024 Memorandum:
The May 7, 2024 memorandum authored by members of the Lyme Disease Advocacy Project details the relationship between the Centers for Disease Control and Prevention and the Council of State and Territorial Epidemiologists. Read more.
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Challenges Associated with Tick-Borne Disease Data: Navigating tick-borne diseases (TBDs) in the United States is analogous to traversing a labyrinth, filled with obscure pathways and blind alleys. These complex passageways found throughout state public health websites fail to provide researchers, public health officials, and medical practitioners with a quick reference to assess locally-acquired disease risk. Additionally, the Centers for Disease Control and Prevention generally do not provide county-level data on tick-borne diseases in the U.S., other than Lyme disease.[1] State public health departments offer limited TBD data, while the presentation of data is typically unhelpful at best. State reporting skips years; is inconsistently presented; or is presented in formats that make it very difficult to build a dataset, even for just one state. Read more. | |
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Lyme disease is the most common vector-borne disease in the United States. School nurses are in a prime position to assist with educational efforts for staff, students and families as children are at the highest risk for acquiring Lyme disease. However, in order to educate others and instill preventative efforts against Lyme disease, school nurses themselves must be informed on the topic.
School nurses need to know the symptoms of Lyme disease. Early signs and symptoms occurring 3 to 30 days after the tick bite, can include fever, chills, headache, fatigue, muscle and joint aches, and swollen lymph nodes may occur in the absence of a rash. Read more.
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Cureus (Brackett, M., et al.) 04.15.2024 published a review article, “Neuropsychiatric Manifestations and Cognitive Decline in Patients With Long-Standing Lyme Disease: A Scoping Review.” Researchers utilized the electronic databases Embase, Ovid Medical Literature Analysis and Retrieval System Online (MEDLINE), and Web of Science to conduct a review of articles regarding neuropsychiatric manifestations and cognitive dysfunction in patients with Long-Standing Lyme Disease (LSLD). For this review, the acronym LSLD is used to include all definitions of chronic and/or late stage Lyme disease, including post-treatment Lyme disease syndrome (PTLDS). Read more. | |
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Heliyon (Bransfield, R.C., et al.) 5.13.2024 published a case report “Late-stage borreliosis and substance abuse.” According to the article, many infectious diseases are known to contribute to substance abuse. Increased risk of substance abuse and addictive disorders can be associated with multiple symptoms of late-stage borreliosis. This case report describes, an adult male patient with a history of tick-bites and tick-borne diseases since childhood with delayed diagnosis and treatment for Lyme disease and increasing multisystem symptoms (including problems with memory and cognition, mood and psychiatric issues, pain, cardiovascular and metabolic issues, sleep issues, and fatigue) resulting in substance abuse. Read more. | |
Time.com (Jamie Ducharme) 05.16.24, published the article “Long Dismissed, Chronic Lyme Disease Is Finally Getting Its Moment.” Ducharme highlights that while acute Lyme disease cases have established diagnostic and treatment guidelines, the same clarity does not extend to cases where symptoms persist long after the initial antibiotic treatment. The medical community far less accepts these cases, known as chronic Lyme disease or Post-Treatment Lyme Disease Syndrome (PTLDS). Many medical professionals dismiss chronic Lyme, but the debilitating symptoms, including severe fatigue, musculoskeletal pain, neurological issues, cognitive difficulties, mood changes, and digestive problems, are very real for those suffering. Read more. | |
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Helmhotlz Centre for Infection Research, Nicole Silbermann (05.13.24) reports in a news release, “Lyme disease: Probability of developing the disease is genetically predisposed.” A team of researchers from the Centre for Individualized Infection Medicine (CiiM), a joint institution of the Helmholtz Centre for Infection Research (HZI) and Hannover Medical School (MHH), discovered a gene variant responsible for increased susceptibility to development of persistent Lyme disease and the immune parameters involved. This research was conducted in cooperation with two medical centers in the Netherlands, Radboud University Hospital and Amsterdam UMC. The findings of this research are published in two studies found in Nature Communications and BMC Infectious Diseases. Read more. | |
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QUESTIONS PRESENTED
- Where does the Council of State and Territorial Epidemiologists (CSTE) get its authority to create disease surveillance case definitions?
- Where does CSTE get its authority to create Lyme disease guidelines?
- Does the Centers for Disease Control and Prevention (CDC) accept CSTE guidelines for other diseases, including controversial diseases?
The following research memo is prepared by Duke Law student members of the Duke Law Lyme Disease Advocacy Project. The LDA has been working with this group for several years to help research difficult questions regarding Lyme disease policy. Read more.
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Prepared by:
Sam Graber-Hahn, JD ‘24, Lucas Lynn, JD ‘25, Sean Prestegord, JD ‘24, Sammy Sawyer, JD ‘25, and Benjamin Spencer, JD/MA ‘24
May 7, 2024
Read the article.
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Presented By:
Congressman Christopher Smith (NJ), Charles Ben Beard, MS, PhD – CDC, Susanna Visser, DrPH, MS – CDC, and Timothy Lynagh, MBA – LDA
Watch the video.
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In this video, the Lyme Disease Association presents a Lyme Disease Awareness Month Program: National Public Health Strategy to Prevent and Control Vector-Borne Diseases in People With a Focus on Lyme & Ticks featuring LDA Board Member Timothy Lynagh, Congressman Christopher Smith, and CDC experts Susanna Visser and Charles Ben Beard. They discuss advocacy, research, and public health strategies to combat Lyme and other tick-borne diseases. Read more. | |
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The US Department of Health and Human Services (HHS) has announced a “Tick-Borne Diseases & Associated Illnesses: National Community Engagement Initiative.” HHS is inviting all interested parties to join in one of the engagement meetings to discuss the serious public health problem of tick-borne diseases. All meetings will take place in San Francisco, CA and Portland, ME.
Topics to be discussed:
- Learn about relevant initiatives and developments.
- Hear updates from federal agencies.
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Submit questions and provide input about patient concerns and priorities. Read more.
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Infection (Pizzuti, M., et al.) 02.01.2024, ahead of publication online, “Epidemiology and treatment of invasive Bartonella spp. infections in the United States.” In this retrospective observational multicenter study, investigators describe the incidence of disseminated Bartonella spp. infections and the treatment-related outcomes. Patient data was collected January 1, 2014, through September 1, 2021. Patients included in the study had a diagnosis of bartonellosis via a diagnosis code. Patients had either positive serology or polymerase chain reaction (PCR) blood tests, 16/18S tests of blood or tissue, cultures of blood or tissue, or cell-free DNA of blood or tissue. Read more. | |
In the Federal Register, (05.06.24), the Centers for Disease Control and Prevention (CDC), within the Department of Health and Human Services (HHS), is announcing a closed meeting and public webinar. This webinar will share information on the National Public Health Strategy for the Prevention and Control of Vector-Borne Diseases in People (VBD National Strategy). The full meeting will be by invitation only to ensure representation and inclusion of researchers, clinicians, public health officials, vector control officials, and patient advocates. However, the public is invited to listen virtually to the opening and closing sessions. Attendance via livestream is unlimited. Read more. | | |
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GLOBE NEWSWIRE (05.07.2024) published an announcement by Bay Area Lyme Foundation regarding groundbreaking data posted on bioRxiv on April 30, 2024. Researchers found a new mechanism of immune evasion used by the bacteria that causes Lyme disease, Borrelia burgdorferi (Bb). Investigators report that bacterial pathogens can evade clearance by macrophages through ‘mimicry’ at the mammalian anti-phagocytic signaling axis between CD47 (ligand) and SIRPα (receptor). Read more. | |
Fox5 News, Washington DC, covers the recent efforts of Lyme advocates calling for a congressional hearing to bring the problem of Lyme disease into the spotlight. Actor Chris Meloni, who has a personal connection with chronic Lyme disease in his family, has teamed up with Lindsay Keys, the director of The Quiet Epidemic, a documentary film about the real impact of Lyme disease. These two advocates state that they hope to influence lawmakers to get the recognition, diagnosis, treatment options, and research that chronic Lyme disease deserves. Read more. | |
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The Lyme Disease Association Inc. (LDA) does not charge any membership fees. Most of our materials are free to download and most of our videos are free on YouTube. Our nationwide doctor referral system is free to access. Printed brochures can be ordered for the cost of S&H. | |
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