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

Free course on treatment strategies for long haul COVID and Lyme patients

A Dublin-based infectious disease doctor who’s treated both long COVID and chronic Lyme patients shares new research and treatment strategies for managing patients with these complex conditions, in a new continuing medical education course sponsored by Invisible International and the Montecalvo Foundation.

The course instructor is 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, as well as the founder of the Lyme Resource Centre in Scotland.

Dr. Lambert is also the lead author on an early, COVID-19 patient study that analyzed 155 COVID-19 patients over a year, to identify predictors and probabilities of developing post-COVID-19 syndrome. This was one of the first studies to identify severe brain-related issues, including brain fog, head pressure, sleep disturbance, memory problems, exhaustion, personality changes, and a whole host of symptoms related to inflamed nerves.

“There are clear similarities between the clinical manifestations seen in Long COVID and Long Lyme,” said Dr. Lambert.

Among the more interesting findings of the study was the prevalence of the mental health conditions associated with Long COVID:

  • 18.3% had moderate-to-severe signs of depression one year after infection
  • 13% had moderate-to-severe signs of anxiety at one year
  • 21% had findings consistent with Post-Traumatic Stress Disorder (PTSD)
  • 72% had concerning alcohol use after a year

These issues are also common among chronic Lyme patients, and for both cohorts, his most passionate plea to front-line physicians is this: “When you conduct a series of tests and find nothing wrong, don’t start prescribing psychiatric medications, suggesting that patients are just anxious, or are having trouble coping, or are having family issues that are driving their symptoms. These patients are suffering from real, inflammation-driven conditions, and we need to start by addressing these first.”

Dr. Lambert’s most important advice to medical clinics treating Long COVID and Lyme is to establish a case management process to help these very ill patients coordinate specialist visits and treatment protocols.

“Both COVID and Lyme disease can affect multiple organ systems, so case management should simultaneously address persistent infection, a deranged and disrupted immune system, and neuro-inflammation,” he said.

He admits that setting up a case management process can be challenging, even in a country like Ireland, with its free, government-sponsored health plan: “Care is fragmented, and patients are sent by their general practitioners to specialist after specialist—gastroenterology, cardiology, rheumatology, and so on. We need to do a better job of connecting and coordinating these specialists.”

As for treatment protocols, he recommends that clinicians use standard therapeutics to suppress the cascade of inflammation triggered by long COVID and to aggressively test and treat for the reactivation viruses that commonly occurs during COVID infections. He also presents study results on the use of low dose Naltrexone for symptom reduction.

This free Continuing Medical Education (CME) is brought to you by the Invisible Education Initiative and the Montecalvo Foundation. Accreditation is in-process.

Take the course here: https://learn.invisible.international/courses/long-lyme-co-infections-and-long-covid/

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.

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New CME: A roadmap for treating neuro-Lyme patients

Dr. Nevena Zubcevik, co-founder of “The Dean Center for Tick Borne Illness” at Spaulding Rehabilitation Hospital/Harvard Medical School and Invisible International’s Chief Medical Officer, has spent a decade successfully treating patients with Central Nervous System (CNS) Lyme disease, aka “neuro-Lyme.” This week she shares her best clinical advice in the first of three medical education courses covering neuro-Lyme symptoms, diagnosis, and treatment strategies.

Unfortunately, the population of chronic neuro-Lyme patients has grown steadily over the last few decades, primarily because of systemic delays in early diagnosis and inefficacy of treatments. It’s sobering to realize that the standard screening test misses up to 89% of early infections (Steere et al, 2008). And after treatment, many patients reported new-onset patient-reported symptoms that increased or plateaued over time. At 6 months, 36% of these patients reported new-onset fatigue, 20% widespread pain, and 45% neurocognitive difficulties. (Aucott, 2013)

Dr. Zubcevik’s first course describes typical neuro-Lyme clinical presentations and discusses the mechanisms of nerve injury that are caused by Lyme disease bacteria. She emphasizes that these injuries are complex but treatable.

Based on her experience as a Harvard-trained, board-certified physical medicine and rehabilitation physician, Dr. Zubcevik stresses the importance of a multidisciplinary “all hands on deck” approach for these patients, many of whom have serious deficits in memory and brain functioning. She recommends that coordination of care —appointment management, home support, physician referrals, and insurance coverage—be an integral part of any treatment plan. She says that mental health support and an anti-inflammatory diet are also key to a patient’s recovery.

The next two courses will dive deeper into how the Lyme bacteria damages the neurological system and dysregulates the immune system. It then lays out detailed diagnosis and treatment strategies for physicians.

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

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Five simple ways to save someone from developing chronic Lyme disease

Whoever saves a life, it is considered as if he saved an entire world.
—Mishnah Sanhedrin 4:5; Yerushalmi Talmud 4:9

Anyone who has lived through a serious case of Lyme disease has probably experienced true despair and hopelessness. In the eyes of the medical system, you are invisible. Your case probably wasn’t sent to the CDC’s broken disease reporting system. The record of your suffering may not be acknowledged in the electronic medical records, because there were no diagnostic codes for chronic Lyme or its complications until January 2022. And finally, the “official” sources for Lyme disease information still say that the disease is easy to diagnosis, treat, and cure—the ultimate insult to those who have personally experienced the opposite.

Invisible International’s team is dedicated to righting these wrongs, by delivering the best diagnostic and treatment evidence to the frontlines of medical care. As we learn how to break through the walls of ignorance, we humbly offer up some ideas on how individuals can save lives from the plague of chronic Lyme disease and other tick-borne diseases.

Make your case count

Enter your Lyme story into the MyLymeData patient registry and research platform. LymeDisease.org’s survey tool tracks patient progress over time. By analyzing large amounts of patient data, researchers can see patterns that help identify gaps in care and treatments that work best.

Share our education courses with physicians

Invisible currently offers 25+ accredited medical education courses on tick- and vector-borne diseases, free to all. The courses cover important topics, such as neurological manifestations of Lyme, new evidence for persistent Lyme, and best practices for treating patients. Watch our medical education courses here and share them with physicians.

Distribute prevention resources to your community

PA Lyme offers a set of tick-bite prevention resources that can be shared with local schools, churches, and camps. Its “Dare 2B Tick Aware” program includes free webinars, educational flyers, and info on tick protection and testing.

Forward our newsletter to friends and family

Invisible’s newsletter delivers a steady stream of information on emerging research, promising treatments, new educational courses, and ways you can help others who’ve been bitten seek prompt, effective treatment.

Donate to our physician education program

One of Invisible’s top priorities is to integrate the Montecalvo physician education platform into the medical school curriculums in the U.S. and abroad. All donations, big or small, will help us make sure that the next generation of physicians learn about the latest strategies for preventing serious tick-borne disease complications and how to get patients better faster.

To read more about Invisible’s medical education, research, and community empowerment programs, visit https://invisible.international

Changes to CDC’s Lyme case definition add complexity, case undercounting

In January 2022, the U.S. Council of State and Territorial Epidemiologists (CSTE) published a revision to its 2017 Lyme disease case definition. This definition will soon be integrated into the physician reporting form that is used by the Centers for Disease Control (CDC) to classify, count, and track Lyme disease cases consistently across the country.

The annual Lyme disease case count is an important metric for allocating government research dollars and staff resources. With about 476,000 new cases a year and growing, the CDC’s previous case definition and reporting requirement was already burdensome for both physicians and local health departments. (In 2016, Massachusetts modified the CDC reporting criteria because of this. In 2008, New Jersey wrote about the burdens of the surveillance criteria here.) Unfortunately, the 2022 revision and the public health burden of the COVID-19 pandemic may only make this situation worse.

The two biggest changes to the definition are the inclusion of Borrelia mayonii, a newly discovered Borrelia burgdorferi family memberin the Lyme case count, and the option for physicians to use a cheaper, simpler test in the second part of the two-tiered testing protocol. Despite a few positive changes to the 2022 revision, the new definition doesn’t fix some of the fundamental flaws of the old definition, and this could lead to the undercounting and misdiagnosis of truly ill Lyme patients.

Here is a summary of major changes and possible impacts:

Borrelia mayonii cases will be counted…sort of. 

Borrelia mayonii is a newly discovered member of the Borrelia burgdorferi sensu lato genospecies that has also been shown to cause Lyme disease. It is primarily found in the upper midwestern United States. Like B. burgdorferiB. mayonii causes fever, headache, rash, and neck pain in the days after infection and can cause arthritis after a few weeks of illness. It can also cause nausea and vomiting; large, widespread rashes; and a higher concentration of bacteria in the blood than B. burgdorferi. Unfortunately, many of these cases will be overlooked because the traditional Lyme tests only pick up about half the B. mayonii cases, and there are currently no FDA-approved B. mayonii tests on the market. (Mayo clinic, IGeneX, and Medical Diagnostics Lab, among others, offer in-house tests.) 

In the two-tiered testing process, the western blot can now be replaced with a cheaper, sometimes less informative, enzyme immunoassay (EIA) test.

Western blots, which display an array of individual antibody bands for both present (IgM) and past (IgG) Lyme infections, are more expensive and harder to interpret than EIA tests. But doing away with the western blots eliminates useful clinical data for treating physicians. Some of the antibody protein bands can shed light on neurologic, arthritic, or late-stage manifestations of the disease. In addition, the revision states that only the IgG “late stage” antibody EIA tests need to be used, which doesn’t acknowledge the dormant and relapsing nature of Borrelia infections. The new definition also requires that the EIA tests are FDA approved, which will discourage the use of accurate, validated in-house tests developed at universities and specialty labs. (FDA approval is only required for tests that are resold to other commercial labs. )

Case reporting has been complicated with geographical requirements that may lead to underreporting.

Two case reporting decision trees are now required for low- and high-incidence case areas, overlayed with a complex matrix of confirmatory/presumptive evidence and suspect/probable/confirmed classifications. What’s more, the determination of whether a person lives in a low- or high-incidence area is based on CDC data that’s typically a year or more old. The complexity of this process will mostly likely lead to underreporting by our already overloaded health-care professionals, and it begs the question—is it really necessary? Lyme disease cases have been detected in all 50 states and the District of Columbia, and people are often infected during travel. Why not make reporting simple up front, and let epidemiologists, data from electronic medical records, and advanced informatics software on the backend of the process analyze the disease spread?

On a positive note, some changes to the new case definition are good. There’s a deemphasis on Lyme arthritis symptoms and the inclusion of other important symptoms, such as secondary rashes and neurological symptoms like headaches, fatigue, stiff necks, and nerve tingling. And kudos to the CDC for highlighting that the surveillance case definitions are not to be used by health-care providers for making clinical diagnoses or treatment decisions.

But overall, the fundamental problem with this new case definition is that the CSTE and CDC have added burdensome complexity on top of an already archaic process, without trying to streamline it and leverage new sources of data and analytical tools to make the case count more accurate. 

If there is light at the end the end of the tunnel, it is that in 2020 the CDC launched a Data Modernization Initiative, in pursuit of a disease tracking system that will bring more real-time public health data to our decision makers. We hope that Lyme disease will be included in that system.

REFERENCES:

CDC’s 2022 Lyme Case Definition:
https://ndc.services.cdc.gov/case-definitions/lyme-disease-2022/

CDC’s 2017 Lyme Case Definition:
https://ndc.services.cdc.gov/case-definitions/lyme-disease-2017/

A comparison of the 2022 and 2017 Lyme case definition:
https://www.documentcloud.org/documents/22020656-2017-vs-2022-lyme-case-definition

2009 HHS Lyme disease case report (not updated yet):
https://www.cdc.gov/lyme/resources/lymediseasecasereportform.pdf

FDA approval of EIA tests:
https://www.fda.gov/news-events/press-announcements/fda-clears-new-indications-existing-lyme-disease-tests-may-help-streamline-diagnoses

Effect of electronic laboratory reporting on the burden of lyme disease surveillance–New Jersey, 2001-2006:
https://www.cdc.gov/mmwr/preview/mmwrhtml/mm5702a4.htm

CDC “Due to the coronavirus disease 2019 (COVID-19) pandemic, [Lyme disease] data from some jurisdictions may be incomplete.”
https://www.cdc.gov/lyme/datasurveillance/recent-surveillance-data

Some good news for the Lyme disease community

This week Invisible International shines a light on recent progress in the Lyme disease world with 10 reasons to be thankful for the patient advocates and researchers dedicated to reducing the suffering of those with Lyme and other tick-borne diseases.

It’s easy to dwell on the negative with Lyme disease. Forty-seven years after discovery of the first case cluster in Lyme, Conn., there are still no reliable tests or effective vaccines on the market. Among those patients who are treated promptly, about a third go on to suffer from persistent symptoms.

But it’s important to keep things in perspective. Incremental progress is being made, albeit slowly. There’s a growing acknowledgment of the magnitude of the Lyme problem in the medical system, the government, and the media. New diagnostics, vaccines, and therapeutics are finally working their way out of basic research labs and into clinical validation studies. Invisible’s mission is to accelerate progress on all these fronts.

Here are 10 signs of progress for the Lyme disease community:

⁕ The CDC ups the annual Lyme disease cases to 476,000
After analyzing medical insurance claims data on Lyme disease in 2021, the U.S. Centers for Disease Control and Prevention upped their public-facing estimate of 300,000 annual cases to 476,000 per year. “Our results underscore the need for accurate diagnosis and improved prevention,” says the CDC. This updated estimate provides a larger “market size” that may incentivize commercial interests to develop better diagnostics, vaccines, and therapeutics.

⁕ New WHO ICD-11 Lyme disease diagnostics codes
The World Health Organization (WHO) added 15 new medical diagnostic codes for Lyme disease (aka borreliosis) complications, effective on January 1, 2022. Over time, these codes will provide patients with more avenues for medical insurance reimbursement and will enable researchers to better track and analyze Lyme disease complications, treatments, and outcomes. On the international front, the European Union is now requiring mandatory reporting of neuroborreliosis, a move that will help with research funding, prevention, and disease tracking.

⁕ More patient participation in the U.S. research agenda
Patients’ voices are starting to be heard. Since 2017, patient advocates in the HHS Tick-Borne Disease Working Group (TBDWG) have been effective in educating Congress and researchers on the urgent need for better diagnostics and treatments. MyLymeData, a patient information database managed by LymeDisease.org, has quantified time-to-diagnosis, common symptoms, and treatment outcomes, providing a big-data window into the needs of patients. Lastly, the Center for Lyme Action, founded in 2019, organized educational sessions within the US federal government to facilitate the passage of a new appropriations bill that nearly doubled the federal funding for Lyme Disease to $108M in FY21.

⁕ Strong evidence of active Lyme infections after treatment
A recent spate of research studies show that Lyme disease symptoms can persist after recommended treatment protocols, challenging the widely held belief that Lyme disease can always be cured with a short course of antibiotics. Acknowledgement that chronic Lyme is a real medical condition is the first step in justifying the development of more effective treatments for both early and late stages of the disease. A summary of this evidence can be found in here.

⁕ Recognition of the dangers of mixed tick-borne infections
When several university labs started gene sequencing and cataloging all the disease-causing microbes inside ticks, they discovered that polymicrobial infections transmitted through a single tick bite are far more common than previously thought. In the U.S., there are at least 18 disease-causing bacteria and viruses carried by ticks. And new studies have found that the standard U.S. Lyme testing doesn’t detect the newly recognized Lyme-like bacterial species spreading in the West and Midwest. This new information is another reason to design better screening tests and treatment guidelines for mixed tick-borne diseases. Read more here, here, and here.

⁕ Invisible International’s free medical education courses on tick- and vector-borne diseases
Invisible International’s physician education platform is the world’s first accredited curriculum focused on tick- and vector-borne diseases. These virtual courses are available at no cost to medical professionals and patients. Taught by leading experts in tick/vector-borne diseases, this platform is accelerating the movement of the latest diagnostics and treatment advice to the frontlines of medical care. New courses are added monthly and are accredited by the American Academy of Family Physicians for AMA credit. This effort is funded by the Montecalvo Family Foundation. To help Invisible integrate these courses into medical school curriculums across the U.S. and abroad, click here.

⁕ New therapeutic/treatment options on the horizon
A relatively new technology called “high throughput drug screening” enables researchers to place Lyme bacteria in an array of tiny wells and expose them to thousands of FDA-approved chemical compounds and drugs to see which ones are best at killing the microbes. The best and safest drug candidates are then retested in live mice, and, eventually, in humans. This process saves the time and money associated with large human clinical trials and speeds up the regulatory approval process. 
 
⁕ The LymeX Diagnostics Prize
The weak link in reducing the public health burden of tick-borne illnesses is the lack of fast, cheap, and accurate diagnostics. Lyme treatment is often delayed because the screening tests aren’t reliable in the first month after infection and not everyone produces or notices a bullseye rash. In the later stages of the disease, antibody testing can be unreliable in the sickest patients, those whose antibody production may be hobbled by concurrent infections or a weak immune system. LymeX, a public-private partnership, will be offering large prizes to incentivize the development of better Lyme diagnostics. This effort is part of the $25 million public-private partnership between the  U.S. Department of Health and Human Services (HHS) and the Steven & Alexandra Cohen Foundation. Invisible is joining the field-wide effort to support new diagnostic development by organizing a “Tick-borne Illness Diagnostics Development Incubator”, a yearlong collaborative forum designed to help bring these diagnostics solutions to the market faster. This effort is funded by the Lovell Family Healthcare Foundation.

⁕ Studies revealing the suicide/mental health risks of Lyme and co-infections
In a large retrospective study of nearly 7 million subjects, 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. Studies like these show that undertreated Lyme disease can lead to serious mental illness, and that it should be a differential diagnosis for certain patients with sudden-onset depression, suicidal thoughts, and other mental disorders. Read more here, here, and here.

⁕ A breakthrough in public awareness of the tick-borne disease problem
A growing number of mainstream journalists, writers, and professionals have gone public with their personal stories on the emotional, financial, and societal toll of tick-borne illnesses. This is an essential step in mitigating the social stigma, medical gaslighting, and myth that Lyme disease is easy to diagnose, treat, and cure. Notable new additions to this genre include “Chronic,” “The Invisible Kingdom,” “The Deep Places,” “What Lurks in the Woods,” and “Bitten” (my book). Invisible’s “Storytelling for Change” initiative aims to continue this momentum with a team of clinicians, researchers, and writers collaborating to produce mass media stories that explain emerging science and promote understanding of the suffering and social injustices laid on families dealing with invisible illness.

Help Invisible International do more to create positive change and scientific advancement for the Lyme disease community. Make a gift today.

For weekly updates on all things related to Lyme disease and other invisible vector-borne diseases, sign up for Invisible International’s newsletter here: https://invisible.international/newsletter/

Tulane researcher asks, “Could chronic Lyme contribute to Alzheimer’s dementia?”

In 2019, the late-great-science-writer Sharon Begley wrote an insightful article, “The maddening saga of how an Alzheimer’s ‘cabal’ thwarted progress toward a cure for decades.”

Begley’s reporting described how a powerful group of researchers became fixated on one theory of Alzheimer’s causation at the expense of all others. Their hypothesis: that Alzheimer’s cognitive decline was caused by neuron-killing, beta-amyloid protein clumps in the brain, and that if you dissolved the clumps, the disease process would stop.

As this theory hit a brick wall, Begley showed how the actions of the cabal harmed patients: “…for decades, believers in the dominant hypothesis suppressed research on alternative ideas: They influenced what studies got published in top journals, which scientists got funded, who got tenure, and who got speaking slots at reputation-buffing scientific conferences.”

Decades later, with no cure or effective drugs for Alzheimer’s dementia, some researchers are gathering evidence on a different causation theory — that dementia could be triggered by any number of chronic infectious diseases, and that amyloid plaques are a byproduct of an active infection, not the cause.

One of these researchers is Monica Embers, PhD, an associate professor of microbiology and immunology at the Tulane National Primate Research Center. She’s also the leading expert in identifying treatments that can eradicate Lyme bacteria infections in nonhuman primates, our closest mammalian relatives. In her new continuing medical education course, “Chronic Infection and the Etiology of Dementia,” she lays out the evidence that the Lyme bacteria could be one possible cause of dementia.

Her theory is this: When pathogens like the Lyme bacteria sneak past the blood-brain barrier, the immune system doesn’t allow protective killer cells from the entering the inflexible brain cavity, because resulting brain inflammation and swelling could lead to death. Instead, it encapsulates invading microbes with protein clumps, called beta-amyloid plaques or Lewy bodies, to stop the infection. As a person ages, the bodily processes that clean up this “brain gunk” slows, resulting in protein accumulation that impedes brain signaling and kills neurons.

In her 31-minute course, Dr. Embers describes the clinical symptoms of Alzheimer’s and Lewy body dementia, the impact on public health, genetic risks, and the list of infections associated with dementia-like symptoms.

The course also reviews a well-documented case study about a 54-year-old woman who was treated for the Lyme bacteria (Borrelia burgdorferi), developed dementia, then died 15 years after the initial infection. After death, B. burgdorferi was identified by PCR (DNA detection) in her brain and central nervous system (CNS) tissues, and by immunofluorescent staining of the bacteria in the spinal cord. (For more, read this peer-reviewed study.)

Dr. Embers and her study’s co-authors conclude, “These studies offer proof of the principle that persistent infection with the Lyme disease spirochete may have lingering consequences on the CNS. Published in postmortem brain autopsy images and extensive pathology tests are a compelling reason to pursue this line of scientific inquiry.”

You can watch this free CME here

To help us launch our CME curriculum in hospitals and medical schools, donate here.

Invisible International’s Education Platform for Tick-borne Illness is funded by the Montecalvo Family Foundation. This platform currently offers 24 free, online Continuing Medical Education (CME) courses on the diagnostics, epidemiology, immunology, symptoms, and treatment of Lyme disease, Bartonellosis, and other vector-borne diseases. 

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