Neuropsychiatric Lyme symptoms: A new masterclass

Invisible International has just released an important medical education course on neuropsychiatric symptoms associated with Lyme disease, with treatment recommendations for specific manifestations. The course is taught by Shannon Delaney, MD, MA, an assistant professor in the Department of Psychiatry and neuropsychiatrist at Columbia University Irving Medical Center.

A key section of the course reviews the latest evidence on Lyme disease persistence after standard treatments, useful in overturning the long-held belief that Lyme disease is always easy to treat and cure.

“It’s staggering,” said Dr. Delaney. “Months to years after the initial infection of Borrelia burgdorferi, patients with Lyme disease may have chronic encephalopathy, polyneuropathy, or less commonly, leukoencephalitis,” she said.

Other topics covered in this masterclass include:

  • The definition of Post-Treatment Lyme Disease Syndrome (PTLDS), as defined by the medical community.
  • Case studies that illustrate the unreliability of testing for neurological Lyme disease.
  • Immune system biomarkers associated with neurological Lyme disease.
  • A description of how the Lyme bacteria creates disease in humans.

Dr. Delaney also reviews a cohort study that analyzed the clinical data of 12,616 Lyme disease patients over 22 years. The study, a collaboration of Columbia University and the Copenhagen Research Centre for Mental Health, is believed to be the first large, population-based study examining the relationship between Lyme disease and psychiatric outcomes. The results are a wakeup call for those who think of Lyme as a disease of mainly rashes and swollen joints; the study found that patients who received a hospital diagnosis of Lyme disease—inpatient, outpatient, or at the ER—had a 28 percent higher rate of mental disorders and were twice as likely to have attempted suicide post-infection, compared to individuals without the diagnosis.

This course reinforces the need for physicians to consider mental health symptoms when developing treatment plans for tick-borne disease patients.

The Invisible Education Initiative, funded by the Montecalvo Foundation, provides free, accredited Continuing Medical Education (CME) courses that focus on vector-borne and environmental illness within a One Health framework. These courses are available to clinicians and the public. To donate to this initiative and to learn about Invisible International, please go here http://invisible.international/give.

Watch here: https://learn.invisible.international/courses/neuropsychiatric-symptoms-with-lyme-disease-tick-borne-illness/

Why is it so hard to find a Lyme doctor? Here are some reasons.

In the first study of its kind, two Lyme disease experts gathered data on a question frequently asked by tick-borne disease patients: Why is it so hard to find a Lyme-treating physician? And how could there be such a doctor shortage, when there are 476,000 new annual Lyme cases per year reported from all 50 states?

Invisible’s new short course answers this question based on data from a survey of 155 clinicians from 30 states who treat Lyme patients. The study’s goal was to identify the problems that clinicians face when treating these patients, a first step to overcoming these obstacles.

The first point that the study’s co-author, Elizabeth L. Maloney, MD, makes is that these patients aren’t easy. Seventy-nine percent of survey respondents said that their biggest challenge was the complexity of care required for tick-borne disease patients. Because Lyme and co-infection testing is unreliable or nonexistent, clinical exams typically take longer than is reimbursed by medical insurance. This means that clinicians lose money on these patients because the economic reimbursement model in the U.S. doesn’t work for complex and/or chronic conditions.

In many cases, Lyme patients have cognitive impairments caused by brain inflammation, making it hard for patients to communicate accurate medical histories and follow treatment protocols. About half of the providers said that their Lyme patients require more handholding and calls between regular appointments than with other diseases.

One of the most surprising findings was the stigma-burden faced by Lyme-treating physicians. Three-quarters said that they had suffered from professional stigma, including:

  • 61% experienced a lack of collegial support
  • 59% faced opposition from physician organizations
  • 19% had been subject to medical board inquiries
  • 11% had been excluded from insurance networks

“We can think of professional stigma, regulatory investigations, and failed economic models as forming a wall that not only separates patients from clinicians, but produces significant disincentives for clinicians to provide care,” said Dr. Maloney. “This leads to a significant supply-and-demand mismatch, which is why patients have trouble finding a treating clinician.”

Dr. Maloney is a retired Minnesota family physician and Invisible’s education co-director. Her co-author is Lorraine Johnson, JD, MBA, the Chief Executive Officer of LymeDisease.org and the principal investigator of its patient registry and research platform, MyLymeData.

The Invisible Education Initiative, funded by the Montecalvo Foundation, is working to educate more health-care providers on the best protocols for getting Lyme patients better faster. We do this by providing free, accredited Continuing Medical Education (CME) courses that focus on vector-borne and environmental illness within a One Health framework. These courses are available to clinicians and the public. To donate to this initiative and to learn about Invisible International, please go here http://invisible.international/give.

Watch here: https://learn.invisible.international/courses/barriers-to-lyme-disease-treatment-what-the-data-is-showing/

New course on healthy dog ownership

Invisible’s new continuing medical education course, “Zoonotic diseases and pet dogs,” discusses common diseases that can spread from dogs to humans, along with some simple prevention tips. It’s taught by Erin Lashnits, MS, DVM, PhD, DACVIM, a clinical assistant professor in small animal internal medicine at University of Wisconsin’s School of Veterinary Medicine. Her pedigree as a veterinarian and a dog lover includes an MS degree in biology from Stanford University, a DVM from Cornell University, and a PhD in comparative biomedical sciences from North Carolina State University.

It’s estimated nearly half of all U.S. households own one or more dogs (80 to 90 million total), and along with cohabitation comes additional disease risks. In this course, Dr. Lashnits covers diseases that can be transmitted from dogs, advice on how to safely import dogs from abroad, and preventative measures when introducing a new dog into a home.

Dr. Lashnits’ new dog checklist:

  • Make sure your dog is vaccinated, dewormed, and treated for fleas and ticks before taking it home.
  • Before letting a new dog roam free with other dogs, keep it separated for about a week, observing for any signs of disease.
  • Avoid feeding your dog raw food to prevent food-borne diseases.
  • Take your dog for routine veterinarian checkups.
  • Provide your dog with year-round flea, tick, and heartworm.
  • Review the CDC guidelines on importing dogs from abroad.

In Dr. Lashnits’ practice, she sees dog bites and flea- and tick-borne diseases as major disease risks. Fleas can carry Bartonella, plague, and rickettsia species. Ticks can transmit Lyme disease, Rocky Mountain spotted fever, several deadly viruses, and a host of other pathogens.

She also offers a warning about dog kisses: “Try to train your dog not to lick you on the mouth, and if it does, wash your hands and face,” said Dr. Lashnits.

Dr. Lashnits goes on to explain how dogs can serve as sentinels for human disease, citing the use of dogs for tracking the alarming spread of invasive Asian longhorned ticks across the middle Atlantic states.

The Invisible Education Initiative, funded by the Montecalvo Foundation, provides free, accredited Continuing Medical Education (CME) courses that focus on vector-borne and environmental illness within a One Health framework. These courses are available to clinicians and the public. To donate to this initiative and to learn about Invisible International, please go here http://invisible.international/give.

Watch here: https://learn.invisible.international/courses/zoonotic-disease-and-pet-dogs/

New CME course on “Diagnostic Challenges in Lyme disease”

In Invisible’s latest medical education course, Monica Embers, PhD, associate professor of microbiology and immunology at the Tulane National Primate Research Center and a leading expert in Borrelia burgdorferi (Lyme) infections in non-human primates, discusses problems with the current two-tiered Lyme testing protocol and describes a promising new diagnostic approach that her lab is working on.

Most Lyme experts agree that the 30-year-old antibody testing approach that we use needs a serious overhaul. The tests don’t work well in the first few weeks after a tick bite because the immune system hasn’t yet produced measurable antibodies. And people who have the worst infections or compromised immune systems may have antibody levels too low to measure. These “false negatives” can lead to truly sick people being denied treatment and going on to become chronically ill.

After a brief overview on the clinical stages of Lyme disease and the two-tiered testing protocol, Dr. Embers goes deep on how immune system responses change during an infection and after treatment. Her strong recommendation: Start over with Lyme testing criteria using next-generation molecular detection equipment to define antibody profiles for all stages of Lyme disease, guided by a more statistically valid study design—because every positive Lyme case missed could result in a life lost to chronic disease.

Another must-see course from Dr. Embers is “Antibiotic efficacy for treatment of Lyme disease,” which presents emerging evidence from animal studies suggesting that the Lyme disease bacterium, Borrelia burgdorferi, is a clever trickster that uses multiple strategies to evade the immune system and survive long after an onslaught of the recommended course of antibiotics. And in her third course, “Chronic Infection and the Etiology of Dementia,” she lays out the evidence that the Lyme bacteria could be one possible cause of dementia.

The Invisible Education Initiative, funded by the Montecalvo Foundation, provides free, accredited Continuing Medical Education (CME) courses that focus on vector-borne and environmental illness within a One Health framework. These courses are available to clinicians and the public. To donate to this initiative and to learn about Invisible International, please go here http://invisible.international/give.

Watch here: https://learn.invisible.international/courses/diagnostic-challenges-in-lyme-disease/

The tick-borne disease epidemic in Ireland: A call for more research

In our newly released medical education course, a Dublin-based infectious disease physician-researcher raises the alarm about the undercounting and under-treatment of tick-borne diseases in Ireland, as well as the risk that this poses to the country’s blood supply.

This course, “Call for international collaboration and data sharing from the clinical trenches,” is taught by Jack Lambert, MD, PhD, a Professor of Medicine and Infectious Diseases at Mater and Rotunda hospitals, and University College of Dublin School of Medicine in Dublin, Ireland. He is also the founder of the Lyme Resource Centre in Scotland and a member of Invisible’s Scientific Advisory Board.

In the course, Dr. Lambert cites studies that have found that:

  • The standard two-tiered antibody tests miss more than 50% of verifiable Lyme patients.
  • One-in-five serum samples from the Irish blood bank showed the presence of antibodies to the Lyme disease bacterium, Borrelia burgdorferi. [Source: Irish Surveillance Center data from high prevalence areas]
  • The overall rate of borrelial infection in ticks collected at six sites in Ireland was 5%, with a range from 2% to 12%, depending on the locations of tick collection. The most prevalent species detected were garinii (70%) followed by B. valaisiana (20%) and B. miyamotoi (10%). All of these Borrelia species cause human disease, and this is the first time that Bmiyamotoihas been detected in Ireland.

“Most people don’t remember a tick, many don’t get the bullseye rash, and many are not offered a Lyme test. For those truly infected, the Lyme antibody test is insensitive. Until we have enhanced surveillance of clinical cases and improved sensitivity of the diagnostic testing, numbers of cases of Lyme disease and coinfections will be underreported,” said Dr. Lambert.

Dr. Lambert also highlights a major flaw in the Lyme disease tracking in Ireland: Reporting is only required for the most serious neurological manifestations of the disease, i.e., patients who have been admitted to a hospital and have had a lumbar puncture that shows specific abnormalities in the cerebral spinal fluid.

Other topics covered include the undercounting of Lyme cases in Canada and the United Kingdom, the geographic spread of Lyme in Europe, and the need to treat patients according to symptoms, not one-size-fits-all guidelines. He goes on to cite evidence that treating with longer courses of combinations of antibiotic yields better patient results.

This free, accredited Continuing Medical Education (CME) is brought to you by the Invisible Education Initiative, funded by the Montecalvo Foundation.

Watch here: https://learn.invisible.international/courses/call-for-international-data-sharing-from-the-clinical-trenches-in-ireland/

Invisible’s Big Wins of 2022

As 2022 comes to an end, the team at Invisible International is taking a moment to reflect on and celebrate our top five achievements of the last year. Invisible was founded only three years ago by a team of passionate and experienced physicians and scientists who recognized the need for a unique approach to solving the challenges of tick-borne illness. This dynamic team remains united around a common mission: To solve the persistent problem of vector- and tick-borne diseases with collaborative, creative educational approaches. In 2022, Invisible officially adopted the One Health framework, which positions its mission within the nexus of climate, human, and animal health. With this change, Invisible has many more collaborators and tools to engage new partners on the challenges of tick-borne disease. Invisible has a lot more in store for 2023, but let’s take a moment to celebrate the wins of 2022!

Our 30+ medical education courses had 7,000 views and received industry accreditation

The Invisible Education Initiative, funded by the Montecalvo Foundation, received accreditation from the prestigious Accreditation Council for Continuing Medical Education (ACCME) for its library of 30-plus continuing medical education courses. (Individual courses are accredited by the American Academy of Family Physicians.) These free courses serve up the latest in research and clinical advice on vector-borne illness, delivered by some of the most knowledgeable experts in their respective fields.

Why it matters: There’s a shortage of experienced tick-borne disease clinicians, with many patients having to wait months and travel long distances for appointments. Our free, on-demand courses—which have been viewed by 7,000+ health-care providers, medical schools, and patients—will increase the number of informed health-care providers. The education platform’s ACCME validation will encourage more physicians to take these courses for credit and will make it easier to integrate these courses into medical school curriculums. These courses will save lives.

Our storytelling team launched a Bartonella education campaign that reached millions

Swamp Boy” — an article, video, and TikTok — tells the dramatic tale of a 14-year-old boy who suddenly experiences sudden-onset psychosis. The story follows his parent’s hellish journey into the medical system as they struggle to save their oldest son from permanent residency in a psychiatric ward. At the root of the teen’s medical problems was Bartonella henselae, a poorly understood stealth bacterium that causes cat scratch disease and disseminated Bartonellosis. This story was published through NowThis, which reaches 115+ million people and 60% of millennials (18-34) each month in the U.S. It was their #2 most read story in 2022 and was lauded by New York Times columnist Ross Douthat. The online story is backed up by a peer-reviewed case study and seven new medical education courses on Bartonellosis developed by members of our “Storytelling for Change” team.

Why it matters: This story is educating the public on common symptoms, testing strategies, and effective treatments for this misunderstood pathogen. It will help many sufferers shed the stigma associated with the mental health symptoms associated with these infections to seek treatment from Bartonella-aware physicians.

Our first “One Health” course is now featured on a CDC training website

Invisible is using the One Health problem-solving framework to reduce the impact of tick- and vector-borne diseases, which have worsened with climate change, ecosystem imbalances, and funding inequities. This year we released a new course taught by Cheryl Stroud, DVM, PhD, “One Health for Human Health Clinicians,” which helps clinicians view their most difficult patient diagnostic challenges through the eyes of a veterinarian and an academic researcher focused on environmental toxins. This course is featured on the CDC’s “Southeastern Center of Excellence in Vector Borne Diseases” training website.

Why it matters: The rise in vector-borne diseases is harming both humans and animals, yet veterinarians and physicians rarely share clinical wisdom on these common foes. Human clinicians can learn a lot from veterinarians on disease pattern recognition, diagnostic strategies, and prevention, and we’re trying to facilitate this transfer of knowledge through our courses.

Our online Hackathon brought global innovators together to propose solutions for connecting animal and human health experts

This year our Innovation Hackathon, funded by the Lovell Family Foundation, focused on enhancing communication between animal and human clinicians. During this One Health Day event, four winning teams received funding for proposals to develop 1) A social network for animal and human health professionals; 2) A comprehensive national review of childhood tick prevention education; 3) An AI-powered surveillance system for vector-borne diseases; 4) A novel tick-borne illness detection device

Why it matters: There are no easy ways for veterinarians, physicians, and public health officials from different countries to share emerging disease data and best practices. Yet diseases and epidemics don’t respect borders. We use our annual hackathons to encourage multidisciplinary teams from around the world to solve our toughest challenges in inventive, technology-driven ways.

We expanded our educational partnerships to Europe and are sharing content with other Lyme nonprofits and wellness websites

This year our curriculum team added our first international CME instructor, Jack Lambert, MD, PhD, a Professor of Medicine and Infectious Diseases at Mater and Rotunda hospitals, a University College of Dublin School of Medicine in Dublin, Ireland, and the founder of the Lyme Resource Centre in Scotland. As we release new courses, our storytelling team works to maximize visibility through content-sharing with the Lyme community and popular wellness websites. For example, this year, MindBodyGreen and LymeDisease.org co-published two important articles on diagnosing tick-borne diseases in adults and young children, reaching millions.

Why this matters: The rise of tick-borne diseases is an international problem that is getting worse with climate change and global travel. After we invest in the development of evidence-based courses, we strive to share this information as widely as possible through strategic partnerships. We will continue to grow our international outreach in the coming year.

If you’d like to see more of these types of projects, please consider making a donation, no matter the size, to Invisible International. With your donation we will be able to continue to pursue medical education, research, and community empowerment programs, all with the mission of alleviating the suffering caused by invisible illnesses.

Wishing you all a healthy holiday and a prosperous new year. We know that our success wouldn’t be possible without your support, and we look forward to improving the health of all in the coming year.

Swamp Boy: A story about Bartonella and mental illness

“Swamp Boy” tells the tale of a bright 14-year-old boy who suddenly hears demonic voices and experiences sudden-onset psychosis—He thinks he’s turning into Swamp Thing, a green, plant-covered monster. The story follows his parent’s hellish journey into the medical system as they struggle to save their oldest son from permanent residency in a psychiatric ward. His psychiatrists are convinced he has schizophrenia—until his determined father solves the mystery behind his delusions, offering the family hope and a cure.

Spoiler alert: For the full dramatic effect, read the full story here first.

This story provides readers with a window into the suffering, stigma, and barriers that this family faced in looking for reasons behind their son’s sudden-onset mental illness. It also illuminates the fault lines in our current medical system, especially the ease with which doctors prescribe symptom-masking drugs over the difficult process of exploring possible infectious causes behind a mystery illness.

At the root of the teen’s medical problems was Bartonella henselae, the tiny stealth bacterium that causes cat scratch disease and disseminated Bartonellosis.

This story, two years in the making, couldn’t have been written without the family who made the courageous decision to share their painful experience for the benefit of others. And a sincere thanks to the team of experts who served as technical advisors—Drs. Edward Breitschwerdt, Rosalie Greenberg, Robert Mozayeni, and Allen Lewis—all co-authors on the original case study behind the story, as well as draft reviewers from Invisible’s “Team GOAT”—Robert Bransfield, MD; Charlotte Mao, MD, MPH; Shari O’Connor, PharmD, MBA; Amanda Elam, PhD, Nev Zubccevik, DO/Invisible’s CMO, and Laura Lott, MBA/Invisible’s CEO.

Team GOAT was a winning team in Invisible International’s 2020 hackathon, which focused on education and awareness projects for tick-borne illness. This team of scientists, clinicians, and writers meets weekly to share research, discuss emerging science, and write articles and case studies about tick- and vector-borne diseases.

Read Swamp Boy here: https://nowthisnews.com/swamp-boy

To learn more about Bartonella history, diagnosis, and treatments, watch the medical education courses on Invisible International’s Montecalvo Tick-borne Disease Education Platform here: https://learn.invisible.international

To help fund more stories, hackathons, and medical education courses like this, go to https://invisible.international/give/

 

Join our One Health Innovation Hackathon on Nov. 5th

Bridging the Knowledge Gap Between Human and Animal Clinicians

Register: https://tinyurl.com/y3285t6m

When: Nov. 5, 2022
—9am to 12:30pm: Lightning Talks on One Health Challenges
—12:30 to 4pm: Med-Vet Innovation Hackathon

What: Learn about the One Health challenges faced by animal and human clinicians in addressing tick- and vector-borne diseases, which have worsened with climate change, ecosystem imbalances, and public health funding inequities. An afternoon innovation hackathon will follow the presentations.

Where: This is a free online event. Zoom info will be sent prior to the event.

Who: Animal and human health professionals, students, hackers, creators and others invested in One Health are welcome. For the afternoon hackathon, participants are invited to form teams of up to 4 people. If you don’t have a team, you can find collaborators during the hackathon.

Awards: Four winning teams will be awarded $1,000 each. Winning teams will be eligible for future solution implementation funding.

Award criteria: Awards will go to four teams with the best pitch deck solution proposals for enhancing communication between animal and human clinicians, improving health for all.

Vet/MD student honorariums: $300 will be awarded to each of the first 10 veterinary and 10 medical students who register and participate in the hackathon. Eligibility is based on date of registration, all-day participation, and proof of enrollment as a vet or medical student.

Speakers: One Health leaders from MassGen/Harvard Medical School, HHS, One Health Commission, University College Dublin School of Medicine, Tulane University School of Medicine, University of Wisconsin School of Veterinary Medicine, North Carolina State College of Veterinary Medicine/Duke University, and more.

Register at https://tinyurl.com/y3285t6m

ABOUT
One Health is a problem-solving framework that strives to improve the health of all living things on the planet through collaborations between animal, plant, environmental, and human health experts.

During this event, participants will learn about and brainstorm on ways to reduce the impact of tick- and vector-borne diseases, which have worsened with climate change, ecosystem imbalances, and public health funding inequities.

The morning will include lightning talks that inform and define the challenges in tackling these problems. The afternoon will feature a hackathon where participant-defined teams and challenge topics will be organized. Teams will hold initial meetings to discuss how they will tackle their hacks and present them to judges later in the year. Awards will be based on solutions presented in team pitch decks at the end of the day.

AGENDA (Subject to change)

9:00am WELCOME REMARKS
Nev Zubcevik DO
Chief Medical Officer, Invisible International

Laura Lott, MBA
Chief Executive Officer, Invisible International

9:15am LIGHTNING TALKS: Why One Health is Important

  • Kristen Honey, PhD*
    Chief Data Scientist and LymeX Co-Founder, Office of the Assist. Secretary for Health,
    US Dept of Health & Human Services *Invited, not confirmed
    “The Importance of One Health InnovationX to HHS”
  • Cheryl Stroud, PhD, DVM
    Exec. Director, One Health Commission
    “One Health for Human & Animal Clinicians”
  • John Lambert, MD, PhD
    Consultant in Infectious Diseases and Genitourinary Medicine at Mater Misericordiae University Hospital; Full Clinical Professor at University College Dublin School of Medicine; Advisory Board Member, Invisible International
    “Call for international collaboration and data sharing from the clinical trenches”
  • Elizabeth Lee-Lewandrowski, PhD, MPH
    Assist. Professor of Pathology, Harvard Medical School; Research Faculty and Clinical Laboratory Scientist, Massachusetts General Hospital, Department of Pathology; Research Director, Invisible International
    “Why You Should Care about Zoonotic Diseases”

10:00am LIGHTNING TALKS: Diagnostic & Treatment Challenges and Solutions

  • Monica Embers, PhD
    Assoc. Professor of Microbiology and Immunology, Tulane University School of Medicine
    “Diagnostic Challenges”
  • Elizabeth Maloney, MD
    Education Co-director, Invisible International
    “Barriers to human treatment: Results from a survey of clinicians”
  • Erin Lashnits, DVM, PhD, MS, DACVIM
    Clinical Assist. Professor, Univ. of Wisconsin School of Veterinary Medicine
    “One Health Clinical Model”

10:45am PANEL: Fostering Animal & Human Health Collaborations
Moderator: Christine Green MD, Education Co-director, Invisible International

  • Edward Breitschwerdt, DVM, DACVIM
    Professor of Medicine and Infectious Diseases, North Carolina State University College of Veterinary Medicine; Adjunct Professor of Medicine at Duke University Medical Center
  • Steven Phillips, MD
    Internal Medicine; Private Practice, author of bestselling book, CHRONIC
  • Charlotte Mao, MD, MPH
    Curriculum Director, Invisible International
    Pediatric Infectious Disease, formerly Dean Center for Tickborne Illness, Spaulding Rehabilitation Hospital; Pediatric Infectious Disease Division, Massachusetts General Hospital
  • Elizabeth Lee-Lewandrowski, PhD, MPH
    Assist. Professor of Pathology, Harvard Medical School; Research Faculty and Clinical Laboratory Scientist, Massachusetts General Hospital
    Research Director, Invisible International
  • 11:30am – 12:30pm Live Q&A

12:30-1:00pm HACKATHON: Idea Pitches

1:00-3:00pm Med-Vet Innovation Hackathon breakout sessions

3:00pm Presentations

3:30-4:00pm Concluding Remarks/Judging/Awards

THANK YOU

Sponsors
The Lovell Family Foundation, The Montecalvo Foundation, The Xefos Family, The Hewson Family

Collaborators
One Health Commission, Louisiana One Health in Action, Galaxy Advanced Microbial Diagnostics

Faculty Affiliations
MassGen/Harvard Medical School, University College Dublin School of Medicine/Mater Misericordiae University Hospital, Tulane University School of Medicine, University of Wisconsin School of Veterinary Medicine, North Carolina State College of Veterinary Medicine/Duke University

When a loved one dies of Lyme: Donating to BAL’s Research Biorepository

Donating the tissues of a loved one who dies of Lyme disease is one of the best ways to accelerate research into better diagnostics and treatments for tick-borne diseases, because sample acquisition is often the most expensive and time-consuming part of a research study. There are very few sources of prescreened human tissue available to researchers.

The Lyme Disease Biobank (LDB), run by Bay Area Lyme Foundation (BAL), offers the best program for facilitating tissue donations and for delivering these samples to qualified researchers. LDB works in partnership with two non-profits, the National Disease Research Interchange (NDRI) and MyLymeData.

The process goes like this: NDRI works with families on the completion of authorization/consent forms and medical histories, then manages the tissue collection. LDB funds the collection and sample storage, and qualifies researchers to receive samples. Families can also link donations to the deceased’s MyLymeData profile, providing researchers with valuable information on a person’s medical history and Lyme or tick-borne disease diagnoses and treatments.

Since the tissue bank was launched in 2018, more than 10 families have donated tissue from deceased loved ones, and over 1,100 blood and urine samples have been collected. Thus far, more than 70 projects have been approved to receive samples. These tissues are being sent to researchers to study infection and inflammation processes and markers, which will provide insights for improving future diagnostics and treatments.

To make this process less stressful on families, NDRI can work with families to create a donation plan. LDB recommends that the NDRI forms be completed as soon as possible in advance of an expected death by requesting them through NDRI’s website at https://ndriresource.org/lyme-disease.

There is someone at NDRI available 24/7/365 to answer questions and assist with shorter timelines. NDRI will determine if a collection site is nearby or will help families locate a pathologist through a mortuary or a nearby medical institution. You can donate from anywhere in the continental U.S.

For more information about tissue or organ donation, visit NDRI’s Lyme registration page, or call 800-222-NDRI (6374), option 5. If the donation is imminent, or if you need immediate assistance, please call the number above.

For general questions that are not time-dependent for collection, please email Liz Horn, PhD, MBI, Principal Investigator, Lyme Disease Biobank at info@lymebiobank.org.

For more information:

Lyme Disease Biobank

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