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

Diagnosing young children with Lyme disease, advice from a pediatrician

Lyme disease affects children more than any other age group, but the young ones are often difficult to diagnose, especially before they’ve developed the vocabulary to describe how they’re feeling. To help parents recognize symptoms and prevent serious illness, I chatted with Charlotte Mao, MD, a pediatric infectious disease physician who trained at Harvard Medical School and Boston Children’s Hospital, and practiced at The Dean Center for Tickborne Illness, Spaulding Hospital, where she treated children with complex Lyme disease. She currently serves as the Curriculum Director for Invisible International’s Medical Education Initiative. Here are some frequently asked questions that she encounters in her practice.

Q: What do I do if I find a tick on my child?

If you see a tick embedded in your child, position a fine-tipped tweezer where the tick’s head meets the skin, then swiftly pull it straight out. Do not grasp, squeeze, or twist the tick’s body. Then place it in a plastic baggie with a small piece of damp paper towel. Wash the extraction area and your hands thoroughly with soap and water.

Consider sending the the tick to a testing lab, to identify the species and what microbes are inside of it. Because the current Lyme disease screening tests are unreliable in the first few weeks after a bite (it takes this long for humans to develop antibodies that can be measured), the results might provide your physician with useful information, especially if your child later comes down with symptoms. You can also go online to identify which tick species transmit various disease agents. Lyme disease is carried by blacklegged ticks, Ixodes scapularis in the Eastern United States and Ixodes pacificus in the West.

Some experts say that it takes at least 36 hours for an attached tick to transmit Lyme bacteria to a host, because this is the minimum time it takes for these bacteria to travel from a tick’s midgut to its saliva glands. However, transmission can happen in some cases with a shorter duration of attachment, specifically when bitten by a partially fed tick that already has Lyme bacteria in its saliva from a previous attachment. This occurs in about 5 to 10 percent of infected ticks, according to the Lyme bacteria discoverer, Willy Burgdorfer. Other tick-borne microbes, such as the potentially deadly Powassan virus, can be transmitted in as little as 15 minutes after tick attachment.

Time is of the essence in preventing serious tick-borne disease. So, in Lyme endemic areas, I personally advise parents to begin preventative antibiotic treatment before tick testing results come back, within 48 to 72 hours of attachment. Over the following month, closely observe a child for symptoms, such as an expanding skin lesion at the bite site, fever, malaise, headache, mild neck stiffness, aches/pains in muscles, or joints aches. If these develop, visit your pediatrician.

Q: How can I tell if my child has Lyme disease?

Early signs of Lyme disease include flu-like symptoms, such as fever (often mild), chills, head and neck pain, body aches (muscle and joint), malaise, and fatigue. (Unfortunately, these symptoms can be mistaken for irritability or viral infections, such as the flu or COVID. Check your child for a Lyme disease rash and don’t forget to check the scalp and skin-fold areas (groin, armpits, behind the knees, and ears). Not everyone gets the classic “bulls-eye” rash; an expanding rash without central clearing is more common. You can find some sample rash images on the Internet.

Other classic Lyme manifestations that can develop include a weakness or paralysis of facial muscles (Bell’s palsy); intense headaches, numbness, tingling, or weakness in extremities (neuropathy); eye and heart issues (especially cardiac rhythm abnormalities); and joint swelling or pain. Gastrointestinal symptoms, generally underappreciated as potential Lyme manifestations, may include nausea, abdominal pain, vomiting, loss of appetite, gastroparesis (stomach paralysis), and/or constipation.

Q: What are some of the late-stage Lyme symptoms?

Physical complications can involve the joints, nervous system, and eyes. Lyme arthritis most commonly involves  one or a few large joints, especially the knee, but can also affect the jaw (temporomandibular joint or TMJ), and, occasionally, small joints of the fingers and toes. Fatigue and aches/pains are common in late and early disease. Lyme disease can also cause behavioral or mood changes in children. Some children develop neuropsychiatric manifestations such as anxiety, depression, panic attacks, or obsessive-compulsive disorders. All these symptoms can come and go, and this can be confusing to a patient, their family, and teachers. But trust that you know your child best, and if you suspect Lyme, visit your pediatrician.

Q: What are the best Lyme disease tests?

A Lyme disease diagnosis ultimately needs to be made based on a multifaceted clinical evaluation with lab work viewed as supportive (or not), but not definitive. My diagnosis is based on a comprehensive medical history, a physical exam, and diagnostic testing for other potential explanations besides Lyme disease.

In testing, I prefer to use Lyme specialty labs that provide more diagnostic information than standard commercial labs. I particularly like Medical Diagnostics Laboratory (MDLab.com) for Lyme immunoblot testing. Immunoblots detect the presence of antibodies to specific proteins of a microorganism that develop  after a person has been exposed to a target infectious organism. Once detected, these antibodies  can be seen as dark bands on a blotting membrane or an imaging system. MDLab’s immunoblot reports include detection results for more than the 10 CDC-specified Lyme bands, and a photo of the patient’s actual blot with an objective optical density score grading the intensity of each detected band.  In some cases, fainter bands that do not meet the lab’s positivity threshold still might provide useful clinical information, increasing the suspicion of a past or present Lyme infection.

Q: What’s your treatment approach for young children?

As an infectious disease specialist, I typically see children who’ve already been treated by their pediatrician but have continuing symptoms after standard treatment courses. These more complex cases often require individualized management approaches.

If a child has not yet received an initial antibiotic course for Lyme disease, I start with recommended oral antibiotics—doxycycline, amoxicillin, or cefuroxime. (While doxycycline has traditionally not been prescribed for children under 8 years of age due to concerns of dental staining, studies have shown the risk of dental staining is much less with doxycycline than older tetracyclines. The American Academy of Pediatrics now says doxycycline can safely be used in children under 8 years for short durations, up to 21 days. Notably, doxycycline has long been the treatment of choice, regardless of age, for tick-borne rickettsial diseases such as Anaplasma, Ehrlichia, and Rocky Mountain Spotted Fever.

For acute central nervous system issues such as Lyme meningitis, I prescribe recommended intravenous antibiotics (typically ceftriaxone), which more effectively reaches therapeutic drug levels in the brain and central nervous system. I also use intravenous ceftriaxone for Lyme arthritis when symptoms haven’t resolved after two courses of oral antibiotics.

To avoid gut issues, I prescribe probiotics and monitor for adverse effects such as diarrhea.

Q: What if symptoms continue after treatment?

In the U.S., ticks are known to carry 18 or more disease-causing microbes, and sometimes concurrent infections can cause lingering symptoms, even after recommended Lyme disease treatment. A considerable degree of overlap exists among the nonspecific manifestations of Lyme disease and other tick-borne infections, but there are certain symptoms that are more prevalent for specific co-infections. I routinely test for Bartonella, Babesia, Anaplasma/Ehrlichia, and Borrelia miyamotoi if the child has not already had this testing done.

Bartonellosis, an under-recognized bacterial infection that can be transmitted by fleas, lice, or cat scratches/bites, can cause a multitude of symptoms, some of them overlapping with those of Lyme disease. These might include fever; swollen lymph nodes; an enlarged liver or spleen; skin “tracks” that may resemble striae or stretch marks; “evanescent” rashes that come and go; and neuropsychiatric symptoms, especially anxiety, panic attacks, anger/aggression/rage episodes, and obsessive-compulsive disorders. Other potential symptoms include tremors; jerky movements; sudden muscle weakness (e.g., “legs giving way”); a sensation of internal vibration; seizures; musculoskeletal pain, including in soles of the feet or shins (the latter is a reported feature of trench fever, caused by Bartonella quintana); abdominal pain; and eye issues (including uveitis and retinitis, both also seen with Lyme). Lab findings occasionally seen with Bartonella, all typically mild, include decreases in white blood cell count; increased eosinophils or monocytes; hemolytic anemia (rarely); increased C-reactive protein levels; and liver enzyme elevations.

Common babesiosis symptoms, caused by a parasite that infects red blood cells, include night or day sweats, fevers (can be high), chills, fatigue, malaise, hemolytic anemia and low platelets. Less common symptoms include headache, dry cough, shortness of breath (sometimes described as “air hunger”), nausea, abdominal pain, vomiting, and diarrhea.

The combination of low white blood cell and platelet counts make me suspect Anaplasma or Ehrlichia.

I always ask about factors that increase risk for repeat exposure/infection, such as outdoor hobbies (hiking, camping, gardening) and exposures to animals and blood-sucking bugs such as ticks, fleas, and lice. For the child with persistent symptoms after recommended treatment regimen(s), I also explore the possibility of nutritional/vitamin deficiencies or environmental toxic exposures, such as water-damaged buildings with mold contamination. Mold toxins or mycotoxins, produced by certain mold species, can complicate Lyme disease or co-infections by causing overlapping symptoms or negatively impacting treatment response.

The decision to administer additional antimicrobial therapy in patients with persistent or recurrent symptoms following standard treatment for Lyme disease is a controversial issue. According to treatment guidelines of most major medical societies, there is no good evidence that these persistent “post-treatment” symptoms are driven by an active infection that might benefit from additional antimicrobial therapy. The topic is too complex to cover here, but I’ll say simply that I do not agree with this blanket statement. The question of how best to treat this subgroup of patients is an area that requires more research and funding.

Q: I’m pregnant. Can I pass Lyme disease to my unborn child?

Borrelia infections can be transmitted from a pregnant mother to her infant. How frequently this occurs and the range of potential health risks for the infant/child have not been well-established. Studies to-date indicate significantly fewer adverse outcomes in treated compared to untreated pregnant women. This is another area that has been under-studied and requires more research attention and funding.

Q: I’m sending my kids to summer camp. Any advice on keeping them safe?

 I recommend pre-spraying clothing with permethrin to keep ticks away. This typically remains effective for six to eight washings. Have them pack insect repellents and don’t forget to teach them how to do tick checks.

Q: What resource can I give my child’s pediatrician to learn more about tick-borne illness?

Invisible International has created the first-ever continuing medical education platform that focuses on tick-borne illness. It is accredited by the American Academy of Family Physicians. Courses on this platform are available at no cost to physicians and other providers. Learn more and share this with your child’s pediatrician. Invisible’s Medical Education Initiative is supported by the Montecalvo Foundation.

###

Free CME course on neurological infections of Bartonella

Invisible International has released a new course on neurological and neuropsychiatric manifestations of Bartonella, a family of stealth bacteria best known for causing cat scratch disease and trench fever. This course discusses neurological presentations, diagnostic strategies, and emerging evidence showing a possible association between Bartonella and schizophrenia.

In the last few years, there has been a growing body of knowledge on the Bartonella family of bacteria. In this course, Edward Breitschwerdt, DVM, a leading expert on Bartonellosis in mammals, delivers the latest research and paints a disturbing picture of what can go wrong if a neurological Bartonella infection runs rampant in an immunocompromised or immunocompetent patient.

In humans, a Bartonella henselae infection (aka cat scratch disease) typically starts with a fever and swelling or lesions at the wound site, appearing three to 10 days after a bite or scratch from an infected mammal. Swollen lymph nodes show up one to two weeks later, and half of patients report headaches, lack of appetite, weight loss, vomiting, and, occasionally, a sore throat.

Five to 20 percent of those infected with cat scratch disease (i.e. an acute Bartonella henselae infection) exhibit severe symptoms, according to national insurance claims data published in the July 2020 issue of Emerging Infectious Diseases. These complications can involve the eyes, heart, liver, spleen, skin, musculoskeletal system and, the focus of this course, the nervous system.

Dr. Breitschwerdt believes that Bartonella is an underdiagnosed driver of many neurologic and neuropsychiatric diseases of unknown cause. He calls his fellow veterinarian workers “the canaries in the coal mine” for this emerging threat, citing a study that showed that 28% of the study’s veterinarian worker subjects were infected with the bacteria, based upon the detection of Bartonella DNA in their blood. He also reminds physicians to ask sick patients about their exposure to animals, bites and scratches, flea infestations and exposures to other known or suspected vectors for Bartonella transmission. Bartonella often occurs in families, infecting both pets and their human companions.

One of the most intriguing parts of this new course is the discussion of a recent study generated with his University of North Carolina research collaborators. The study found that people with schizophrenia were more likely than healthy volunteers to have Bartonella DNA in their bloodstream. In this study, 11 of 17 schizophrenia patients (65 percent, compared with 13 healthy controls) tested positive for Bartonella using the new “droplet digital enrichment blood culture PCR test” that his research team developed. Because this study was halted early due to the COVID-19 pandemic, a larger study is being planned at this time.

Edward Breitschwerdt, DVM, the course’s author, is the Melanie S. Steele professor of medicine and infectious diseases at the North Carolina State University College of Veterinary Medicine. He is also an adjunct professor of medicine at Duke University Medical Center and a diplomate in the American College of Veterinary Internal Medicine (ACVIM). As a leading expert on bartonellosis, he directs the Intracellular Pathogens Research Laboratory in the Institute for Comparative Medicine and co-directs the Vector Borne Diseases Diagnostic Laboratory at NCSU. This course is currently in review for CME credit by the American Academy of Family Physicians.

This project is 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/mission

Links to Bartonella courses: History of a hidden pandemic, Vectors and other modes of transmission, Reservoir hosts: Bats, cats, dogs, mice and men, Comparative infectious disease causation, Disease expression and host immunity, and Diagnosis of Bartonella species infections.

A historic case study on chronic Lyme disease

In this free medical education course, Kenneth Liegner, MD, a New York-based internist who has been treating tick-borne disease patients since 1988, discusses one of the earliest documented cases of chronic Lyme disease.

In 1987, Vicki Logan, a 39-year-old pediatric intensive-care-unit nurse from Goldens Bridge, New York, began suffering from headaches, fevers, fatigue, progressive paralysis, cognitive difficulties, and memory loss. Her doctors couldn’t figure out what was wrong, so she was left to cope with this debilitating chronic illness on her own.

Two years later, Dr. Kenneth Liegner of Pawling, NY, decided to take on Logan as a patient, in what may be one of the earliest and most scientifically validated case of chronic Lyme disease on record.

First, he tested Logan for Lyme disease, and all the tests came back negative. She had no history of tick bite or rash, but he knew that Logan lived in a hot spot for Lyme disease, so he decided to presumptively treat her with intravenous antibiotics. After three weeks of IV cefotaxime and four months of oral minocycline, he saw no improvement in her condition.

This started a long diagnostic process to figure out what was wrong with Logan. Along the way, Dr. Liegner consulted with experts in rheumatology, immunology, and neurology. Repeatedly he sent her cerebral spinal fluid (CSF) to pathologists, all of whom observed no bacterial infections. Finally, he sent a spinal fluid sample to the Centers for Disease Control (CDC), and, when the fluid was placed in a special BSK-II growth medium, spirochetes began multiplying. On Jan. 14, 1994, the CDC experts verified that this was the first “gold standard” proof that the Lyme bacterium, Borrelia burgdorferi, can survive in a patient after months of IV and oral antibiotic treatments.

Because Logan’s Lyme disease case was so well documented, her post-mortem tissues have been used in numerous research studies. These studies have shown that the Lyme bacteria had invaded her heart, liver, and brain. A more recent study suggests that Borrelia burgdorferi is able to withstand the administration of antibiotics by forming biofilm structures, protective clusters of microbes, polysaccharides, proteins, lipids, and DNA, around itself.

You can watch a first-hand account of this fascinating medical mystery story here.

***

This course is part of Invisible International’s Education Platform for Tick-borne Illness, funded by the Montecalvo Family Foundation. It currently offers more than 22 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 committed to alleviating the suffering caused by invisible illnesses, through education, research, and community empowerment.

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

Other related courses: Borrelia persistence “Bench to Bedside” E-Colloquium, Antibiotic efficacy for treatment of Lyme disease, The impact of immune responses on diagnosis and treatment of Lyme disease

Tulane researcher discusses the evidence for persistent Lyme and promising new treatment strategies

Monica Embers, PhD, director of the vector-borne disease research center at Tulane University School of Medicine, summarizes evidence that suggests that Lyme bacteria can survive long after standard treatment protocols in a new online medical education course. She also discusses promising new treatment strategies for eradicating these bacteria.

Emerging evidence from animal studies suggest 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. This begs the question—Are our current Lyme treatment protocols all wrong?

In the accredited continuing medical education course, “Antibiotic efficacy for treatment of Lyme disease,” Monica Embers, associate professor of microbiology and immunology and a leading expert in investigating B. burgdorferi infections in a nonhuman primate model, summarizes current Lyme treatment protocols, key studies on antibiotic efficacy, and new strategies aimed at curing the infection.

“It’s clear from the cumulative evidence that persistent Lyme disease is a common occurrence and that we urgently need to explore more effective treatment strategies,” said Embers.

This new 32-minute course, part of Invisible’s Montecalvo Platform for Tick-Borne Illness Education, has been approved for 0.5 CME credit by the American Academy of Family Physicians. Each CME course includes a list of studies cited in the lecture.

One of the more surprising revelations in the lecture is that doxycycline, the drug of choice for treating adults with Lyme disease, doesn’t clear all of the causative bacteria. It only slows their proliferation, disrupting cell-wall creation as each forms a copy of itself by splitting into two. When the Lyme bacteria sense doxycycline, they shapeshift into spherical, dormant forms called persister cells, so they can wait out the chemical storm.

Dr. Embers backs up these claims with a series of thoughtfully designed experiments on nonhuman primates, our closest mammalian relatives. In one study, she treated five rhesus macaques with a 28-day course of doxycycline and five without. A year after the trial began, nine out of the 10 macaques, both treated and untreated, showed signs of ongoing illness and live Lyme spirochetes were isolated. In addition, those that received doxycycline had more bacteria in the brain.

The study’s conclusion: “We observed evidence of persistent, intact, metabolically-active B. burgdorferi after antibiotic treatment of disseminated infection and showed that persistence may not be reflected by maintenance of specific antibody production by the host.”

Simply put, treating with doxycycline didn’t seem to be a cure, and the Lyme bacteria appear to have ways of suppressing antibody production so that it can fly under the radar of the immune system.

Given this evidence, why does the medical establishment still recommend doxycycline as a front-line Lyme treatment? One reason is that doxycycline appears to be effective at most early infections, along with Rocky Mountain Spotted Fever and anaplasmosis, other serious tick-borne diseases that are often mistaken for Lyme disease in the early stages.

Embers also says that treatment study results may be skewed by the overuse of mice as test subjects. Mice are cheap, but they’re lousy stand-ins for humans. They’ve evolved alongside ticks to serve as a living holding tanks for the Lyme bacteria, so they don’t get as sick as humans when infected.

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. There have been no human treatment studies published in over 20 years, and only 0.30% of the National Institutes of Health Lyme research budget has been focused on human treatment studies in the last five years (2015-2019).

At the end of lecture, Dr. Embers cited several lab studies (bacteria-in-a-dish) and animal studies showing that a cocktail of three antibiotics are highly effective in eradicating the Lyme bacteria. (This study from Johns Hopkins found that a combination of daptomycin, cefoperazone and doxycycline was effective in eradicating persister cells.) But of course, clinical trials are needed to validate these findings.

One of the ways Invisible International is working to accelerate the movement of treatment evidence to patient care is by launching Tick Bytes, a centralized clinical data repository that provides quality de-identified tick-borne illness patient data to researchers nationwide. Researchers can 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 the government. This in turn will improve diagnostics and treatment options, leading to better outcomes, insurance coverage, and more sophisticated understanding of tick-borne diseases. Invisible is currently looking for funding for 10 data collection sites.

Dr. Embers’ CME course 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 on our website.

Invisible International is a 501c3 that aims to solve challenges related to tick-borne illness through research and physician education. Its core team includes health care providers and scientists specializing in Infectious Disease, Internal Medicine, Family Medicine, Pathology, Pharmacy, Psychology, and Physical Medicine and Rehabilitation, as well as innovation and healthcare leaders.

Other related courses: The impact of immune responses on diagnosis and treatment of Lyme diseaseBorrelia persistence “Bench to Bedside” E-ColloquiumPersistent Lyme disease

Image credit: Hailshadow at iStock

Harvard study identifies symptom clusters in Lyme patients with persistent symptoms after treatment

retrospective study of 270 post-treatment Lyme patients identified the most debilitating neurological symptoms, paving the way for future studies on root causes of disease and better treatments.

The largest study to-date characterizing ongoing symptoms [1] of Lyme patients after antibiotic treatment has been published by a group of investigators at Harvard-affiliated hospitals and Invisible International, a non-profit organization. They also examined the relationship between symptom severity and perceived disability, identifying five of the most debilitating symptom categories — fatigue, cognitive deficits, neuropathy (nerve numbness or weakness in the extremities), migraine headaches, and mood disorders.

The study lays a scientific foundation for future research that will help the growing ranks of post-treatment Lyme patients suffering from lingering symptoms. 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 36% [2] of those treated with antibiotics go on to experience disabling long-haul symptoms, such as severe fatigue, joint/muscle pain, cognitive problems, and neurologic symptoms.

Patient impairment was assessed through medical chart reviews of 270 individuals who had been treated for Lyme borreliosis through the Dean Center for Tick-Borne Illness at Spaulding Rehabilitation Hospital Boston, a Harvard affiliate, between 2015 and 2018. Symptom and disability data was also collected through scientifically validated questionnaires. Symptom clusters were defined as two or more symptoms occurring together, indicating that they might share the same triggering mechanism. This approach, used in other chronic conditions, such as cancer and inflammatory bowel disease, helps guide researchers in identifying root causes and better treatment strategies.

“This study is an important first step in figuring out why these patients aren’t getting better,” said Dr. Nevena Zubcevik, DO, the first author on the study and the former co-director of the Dean Center for Tick Borne Illness. “Going forward, we’re taking what we’ve learned to set up a multi-institutional clinical data repository that will provide high quality, de-identified tick-borne illness patient data to any interested researcher.”

To expedite the discovery of clinical treatments for patients suffering with chronic tick-borne illness, Dr. Zubcevik is now leading the Tick Bytes Clinical Data Research Platform through Invisible International, in her role as Chief Medical Officer. The resulting open-source data would enable researchers to access prospectively acquired clinical and laboratory data, as well as possible biorepository specimens, on a large group of well-defined pediatric and adult patients with complex Lyme disease. This repository would also collect data on mixed infections and/or environmental/toxic exposures, influences that often worsen the outcomes of these patients. Using 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.

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. Invisible’s 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 are 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.

This study and Invisible International’s Change Platform for Tick-borne Illness were funded by generous donations from Mark and Eileen Lovell. The organization is currently seeking additional support to expand its TickBytes data collection sites. To learn more about how you can help, go to: https://invisible.international/give

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

 ###

Other related courses: Persistent Lyme diseaseNeurologic complications of Lyme diseaseBorrelia persistence “Bench to Bedside” E-Colloquium

Photo credit: francescoch/iStock

End Notes

[1]

Marques A. Chronic Lyme disease: a review. Infect Dis Clin North Am. 2008;22(2):341-viii. doi:10.1016/j.idc.2007.12.011

Asch ES, Bujak DI, Weiss M, Peterson MG, Weinstein A. Lyme disease: an infectious and postinfectious syndrome. J Rheumatol. 1994 Mar;21(3):454-61. PMID: 8006888. [Retrospective evaluation of 215 Lyme patients who were diagnosed and treated > 1 year prior.  Found/described persistent symptoms in 114 (53%).]

Clarissou J, Song A, Bernede C, et al. Efficacy of a long-term antibiotic treatment in patients with a chronic Tick Associated Poly-organic Syndrome (TAPOS). Med Mal Infect. 2009;39(2):108-115. doi:10.1016/j.medmal.2008.11.012. [Open-label prospective study of 100 patients after treatment for chronic TAPOS (Tick Associated Poly-Organic Syndrome), evaluating their evolution on prolonged antibiotics.]

Horowitz RI, Freeman PR. Precision Medicine: The Role of the MSIDS Model in Defining, Diagnosing, and Treating Chronic Lyme Disease/Post Treatment Lyme Disease Syndrome and Other Chronic Illness: Part 2. Healthcare. 2018; 6(4):129. https://doi.org/10.3390/healthcare6040129. [Patient symptom survey and retrospective chart review of 200 patients with chronic Lyme/PTLDS.]

[2]

Strle, F., Cimperman, J., Maraspin, V. et al. Azithromycin versus doxycycline for treatment of erythema migrans: Clinical and microbiological findings. Infection 21, 83–88 (1993). https://doi.org/10.1007/BF01710737. [“Minor” symptoms in 15/52 (29%) who received doxycycline and 10/55 (18%) who received azithromycin.]

Dattwyler, R.J.; Luft, B.J.; Kunkel, M.J.; Finkel, M.F.; Wormser, G.P.; Rush, T.J.; Grunwaldt, E.; Agger, W.A.; Franklin, M.; Oswald, D.; et al. Ceftriaxone compared with doxycycline for the treatment of acute disseminated Lyme disease. N. Engl. J. Med. 1997, 337, 289–294. [Persistent symptoms at last follow-up visit in 18/68 (26%) Ceftriaxone vs 10/72 (13.9%) doxycycline.]

Aucott JN, Rebman AW, Crowder LA, Kortte KB. Post-treatment Lyme disease syndrome symptomatology and the impact on life functioning: is there something here?. Qual Life Res. 2013;22(1):75-84. doi:10.1007/s11136-012-0126-6. [Prospective cohort study of 63 patients with EM rash and systemic symptoms treated with doxycycline reported a 36% rate of PTLDS.]

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

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

Other related courses: Basic principles of diagnostic testingAntibiotic efficacy for treatment of Lyme diseaseThe impact of immune responses on diagnosis and treatment of Lyme disease

Image credit: Happy Photon, iStock

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

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

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

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

Sign up for our

Newsletter

For health news, free courses, Invisible updates, resources, and more