Lyme research Archives

Neuropsychiatric Lyme symptoms: A new masterclass

Kris Newby on March 11, 2023

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/

New CME course on “Diagnostic Challenges in Lyme disease”

Kris Newby on January 24, 2023

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.

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

Invisible’s Big Wins of 2022

Kris Newby on December 22, 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.

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

Kris Newby on October 5, 2022

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

Lyme disease heightens risk of mental disorders, suicidality

Carla Cantor, Columbia University on August 17, 2021

A Columbia-led study advises physicians and patients to be aware of psychiatric symptoms, particularly the first year after diagnosis

In a new study, U.S. and Danish researchers report 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.

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 research appears in the July 28 online edition of the American Journal of Psychiatry (link is external and opens in a new window)

“It is time to move beyond thinking of Lyme disease as a simple illness that only causes a rash,” said Brian Fallon, MD, MPH, a psychiatrist with the New York State Psychiatric Institute and Columbia University who is the lead author of the paper. “In addition to the risk of severe cardiac, rheumatologic, and neurologic problems, Lyme disease can cause severe mental health problems as well.”

Dr. Fallon, one of the foremost researchers of the neuropsychiatric effects of Lyme disease, is director of the Lyme and Tick-borne Diseases Research Center at Columbia. The team of investigators on the study includes Michael Benros MD, PhD, principal investigator; Trine Madsen, PhD, co-first author; and Annette Erlangsen, PhD, all psychiatric epidemiologists at the Research Centre for Mental Health.

Higher Rate of Death by Suicide

To conduct their study, the researchers analyzed the medical record diagnoses of nearly 7 million people living in Denmark over a 22-year period, comparing the mental health data of individuals after a hospital-based diagnosis of Lyme disease to the rest of the Danish population who had never had a Lyme diagnosis recorded in the national medical register.

Patients who had a history of mental disorder or suicidality prior to the Lyme disease diagnosis were excluded from the analysis.

The analysis revealed that in addition to patients with Lyme disease being at greater risk of mental disorders and suicide attempts, they also had a 42 percent higher rate of affective disorders, such as depression and bipolar disorder, and a 75 percent higher rate of death by suicide than those without the diagnosis.

Additionally, having more than one episode of Lyme disease was associated with a higher rate of mental disorders, affective disorders, and suicide attempts.

Half a Million People Treated for Lyme Disease Each Year

Each year nearly half a million people in the United States are diagnosed and treated for Lyme disease, also known as Lyme borreliosis, caused by a bacterium carried by deer ticks and transmitted to humans through their bite. The majority of cases have been reported in the northeastern, mid-Atlantic, and north-central states, but the geographic range where ticks and tick-borne diseases are found continues to expand.

Although most cases can be cured with a two- to four-week course of oral antibiotics, 10-20 percent of patients may suffer with symptoms of pain, fatigue, or difficulty thinking that last for months to years after treatment.

Several studies have pointed to a connection between Lyme disease and cognitive disorders months to years after antibiotic therapy or in people with untreated infections. In severe cases, individuals with late-stage Lyme disease may experience impaired concentration, irritability, memory and sleep disorders, and painful nerve dysfunction.

Dr. Michael Benros emphasizes that most people do not develop severe mental health issues after Lyme borreliosis. During the study period, only 7 percent of the nearly 13,000 individuals with a hospital diagnosis of Lyme disease followed up with hospital clinicians complaining of symptoms subsequently diagnosed as mental disorders.

Clinicians and Patients Should Be Aware of Risk

But findings of the study, the researchers said, are emblematic of a trend in Lyme disease cases that should not be overlooked. The Danish medical registry includes only psychiatric diagnosis made in a hospital setting – not by clinicians in communities – and it is likely that the number of individuals with new onset mental health problems following infection is much higher.

“This nationwide study confirms the association between Lyme disease and psychiatric disorders,” Dr. Benros said. “Treating clinicians and patients should be aware of an increased risk of mental health problems, particularly during the first year after a severe Lyme disease infection, and if mental health issues arise, patients should seek treatment and guidance. “

The study, “Lyme Borreliosis and Associations with Mental Disorders and Suicidal Behavior: A Nationwide Danish Cohort Study,” was funded by the Global Lyme Alliance, Inc.

Experts discuss strategies for fighting those Lyme symptoms that won’t go away

Kris Newby on July 6, 2021

Two tick-borne disease experts, a physician and a researcher, discuss the many ways Lyme bacteria evade the immune system and promising new strategies for fighting lingering symptoms.

People with long-haul Lyme disease symptoms are often sidelined by the medical community. In a 2019 survey of 1,900 Lyme patients, 74% reported being treated disrespectfully by a healthcare provider, and 67% said that they postponed or avoided medical treatment due to discrimination, disrespect, or difficulty obtaining care.

Many of these patients develop chronic Lyme because the latest evidence on diagnostics and treatment isn’t reaching busy frontline physicians, who misdiagnose or undertreat. Some health-care providers don’t know that about 30% of Lyme sufferers don’t see the classic Lyme rash. Or that the Lyme screening tests aren’t reliable in the first month after infection. Or that 10 to 20% of the Lyme patients fail to recover after taking the short course of antibiotics recommended by the Infectious Diseases Society of America (IDSA). And, to add insult to injury, there have been no new NIH-funded chronic Lyme treatment trials for more than 20 years — and Lyme sufferers need relief now.

Invisible International aims to fuel meaningful change for patients by accelerating the flow of new medical knowledge to treating physicians through the Bench-to-Bedside E-Colloquium, a monthly series of interactive discussions between world class researchers and boots-on-the-ground clinicians. The objective is to educate the medical and patient communities about promising new research and treatments, and to build bridges between these communities. Each colloquium will be annotated with the latest evidence from peer-reviewed journal articles.

The inaugural E-Colloquium tackles the controversial topic of “Borrelia persistence,” addressing the questions, “How does the Lyme bacterium, Borrelia burgdorferi, survive a recommended dose of antibiotics in the human body, and what treatment strategies can be used to eradicate the surviving organisms?”

The panel features Kenneth Liegner, MD, a distinguished internist who has been diagnosing and treating Lyme disease and related disorders since 1988, and Monica Embers, PhD, associate professor of microbiology and immunology and the director of the vector-borne disease research center at Tulane University School of Medicine. Embers is a leading expert in identifying treatments that can eradicate B. burgdorferi infections in primates, our closest mammalian relatives. The discussion is moderated by Christine Green, MD, a Stanford-trained and board-certified family medicine physician with 30 years of experience treating patients with tick-borne illness.

Invisible International’s Education Platform for Tick-borne Illness is funded by the Montecalvo Family Foundation, and the organization is currently seeking support to expand the E-Colloquium program. This platform currently offers more than 20 free, online Continuing Medical Education (CME) courses on the diagnostics, epidemiology, immunology, symptoms, and treatment of Lyme disease, Bartonellosis, and other tick-borne diseases.

Invisible International, a 501(c)(3) nonprofit organization, is dedicated to reducing the suffering and social marginalization associated with invisible illnesses through innovation, education, and data-driven change projects. Their core team includes board-certified health-care providers in Infectious Disease, Internal Medicine, Family Medicine, Psychiatry, Pharmacy, Pathology, and Physical Medicine and Rehabilitation, many trained at or affiliated with top-tier universities such as Harvard, Stanford, MIT, Brown, UC Berkeley, UC San Francisco, the US Air Force Academy, University of Virginia, and University of Pittsburgh.

You can sign up to receive news and updates at https://invisible.international/mission

Image credit: Happy Photon, iStock

Newsletter