New Massachusetts General Hospital study on important heart issues in Lyme disease patients

A Massachusetts General Hospital study that raises the awareness of possible cardiac involvement in early Lyme patients was recently published. This small study is the first to use data that measures a complex protein (troponin) to detect possible cardiac involvement in patients with early Lyme disease and with subclinical, or non-noticeable cardiac symptoms. Overall, 14.6% of the study subjects had elevated troponin T levels above the normal range. These findings were published in the March 2022 issue of Annals of Clinical & Laboratory Science and are explained in a new course from Invisible International, taught by first author Elizabeth Lee Lewandrowski, PhD, MPH, an Assistant Professor of Pathology at Harvard Medical School, a Faculty Researcher and Clinical Laboratory Scientist in Pathology at Massachusetts General Hospital, and Invisible International’s Research Director.

Troponin is a complex of three proteins (troponin T, I, and C) that regulate muscle contractions in the heart. When the heart is damaged, these proteins are released into the bloodstream, allowing clinicians to measure levels to determine the extent of heart damage. Both troponin T and I are detected and elevated in the blood  when the heart is negatively impacted by various conditions, including  infection, inflammation, or muscle damage. Therefore, this is potentially an important test for doctors to follow in the event of suspected cardiac involvement including subclinical cardiac involvement in patients with Lyme disease.

Previously, the Centers for Disease Control and Prevention reported that Lyme carditis occurs only in about 1% of Lyme disease cases (2008 to 2017). This newer study of 41 early Lyme patients used the high sensitivity troponin T test and found that 14.6% had elevated troponin T levels, suggesting that the heart is damaged in more early Lyme disease cases than previously realized. This finding should be brought to the attention of healthcare providers as it suggests cardiac involvement in early Lyme disease may be more common than previously realized. While there are many explanations for elevated troponin levels in these patients, including a systemic inflammatory response, this result raises the question that subclinical cardiac involvement may be more common than previously recognized. Further investigation is necessary to explore and validate the significance of this finding. 

Some of the heart conditions that troponin T tests can detect include electrical disruptions (AV block, most common in Lyme carditis), inflammation (myocarditis), swelling of the heart sac (pericarditis), inflammation of the inner lining and valves (endocarditis), problems with the pumping action (cardiomyopathy), and heart attacks (myocardial infarctions). Some of these conditions can be fatal, emphasizing the need for rapid diagnosis and treatment when Lyme carditis is suspected.

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

Watch here: https://learn.invisible.international/courses/measurement-of-high-sensitivity-troponin-t-in-patients-with-early-stage-lyme-disease-possible-evidence-for-subclinical-cardiac-involvement/

New course on One Health strategies for diagnosing Lyme disease

If you’re a clinician looking for new evidence-based insights into diagnosing Lyme disease, this course is a good starting place. It begins with a brief overview of the One Health approach to combating vector-borne diseases. Then it applies this framework to Lyme disease, which accounted for 60% of all vector-borne diseases in the U.S. from 2004 to 2016.

Early Lyme diagnostic strategies are addressed by Elizabeth Maloney, MD, the Education Co-director at Invisible, a Minnesota family physician, and the founder/president of Partnership for Tick-borne Diseases Education, a nonprofit providing evidence-based education on tick-borne diseases. Dr. Malone reviews four cases that highlight symptom patterns to look for in diagnosing early Lyme, Lyme carditis, and cranial neuritis, which often presents as facial Bell’s Palsy. She also discusses the flaws inherent in current Lyme diagnostic tests.

Late-stage Lyme disease rehabilitation is covered by Nevena Zubcevik, DO, Chief Medical Officer of Invisible International, previously co-founder and co-director of the Dean Center for Tick Borne Illness at the Spaulding Rehabilitation Hospital, an affiliate of Harvard Medical School. Dr. Zubcevik emphasizes that Lyme diagnostics aren’t always reliable for late-stage Lyme, so she presents evidence-based symptom clusters that may help clinicians with diagnoses. To assess the nervous system inflammation that is characteristic of late Lyme, she recommends taking a punch biopsy to test for small fiber neuropathy, and PET brain scans to confirm the inflammation that is at the root of the memory deficits found in 74% of these patients.

In addition to this course, Invisible offers resources to help in clinicians in the diagnostic process. These include a General Symptom Questionnaire (GSQ-30) for assessing patient impairment; a health risk assessment tool that helps patients think about exposures to environmental, animal, and travel-related diseases that might be contributing to ill health; and an evidence-based symptom list for babesiosis, bartonellosis and (Lyme) borreliosis, all common tick-borne diseases.

Invisible International is developing courses and clinician tools like these to accelerate the movement of new research to frontline clinicians. We hope these anytime, anywhere courses will grow the pool of health-care providers who are experienced in the diagnosis and treatment of tick- and other vector-borne diseases. This means fewer patients will have to travel long distances and wait months for an initial appointment. Education heals.

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

How education can bend the curve in the tick-borne disease epidemic

There’s a dire shortage of health-care providers who are experienced in the diagnosis and treatment of tick- and other vector-borne diseases. This means many suffering patients must travel long distances and wait months for an initial appointment, leading to worse patient outcomes. [1]

There are immense insurance and logistical barriers that discourage providers from taking on patients with tick-borne diseases. Some of these were identified in a 2022 survey-study of 155 clinicians from 30 states who treat Lyme patients. They included complexity of care (79%), the cognitive impairment of patients (57%), and frequent patient calls between scheduled appointments (49%). [1]

This shortage of trained providers is getting worse as the incidence of vector-borne diseases rises. The Centers for Disease Control reports that:

  • Diseases spread by mosquitoes, ticks, & fleas tripled in the U.S., 2004-2016.
  • Since 2004, 9 new pathogens spread by mosquitoes & ticks have been discovered.
  • 476,000 Americans are diagnosed with Lyme disease each year, in all 50 states.

Despite the alarming rise in these diseases, a 2023 study led by Cornell University, “Review of Continuing Medical Education in Tick-Borne Disease for Front-Line Providers,” found a “limited availability of continuing education for multiple life-threatening tick-borne diseases of increasing importance in the United States.” [2]

Invisible International is filling this educational gap by producing best-in-class Continuing Medical Education (CME) courses on vector-borne and environmental disease, available to anyone online for no cost. These courses cover prevention, diagnosis, and treatment of these disease.

What is CME?

Continuing Medical Education (CME) educational activities are classes, workshops, or conferences that increase the knowledge and skills of health-care providers, ensuring that they stay current on the latest medical research and best medical practices. Some states require that doctors, nurses, and other health professionals accrue a certain number of CME course credits each year to keep their medical licenses active.

 What is unique about its CME offerings?

Invisible has one of the largest online CME collections of vector-borne diseases available. The courses are delivered by some of the most knowledgeable experts in their respective fields, featuring topics like persistent Lyme disease, the Bartonelloses, Lyme disease treatment, and neuropsychiatric symptoms of tick-borne diseases. Our courses incorporate the One Health concept, a recognition that the health of humans, pets, and the environment are all intertwined.

What is CME accreditation?

CME courses can be developed by medical societies, universities, companies, or nonprofits such as Invisible International. For these activities to be counted towards annual CME totals, they must be approved by independent accreditation organizations. This ensures that the educational activities are relevant, practice-based, effective, based on valid content, and independent of commercial influence.

Is Invisible’s CME accredited?

Invisible International’s Continuing Medical Education (CME) platform is accredited by two governing bodies:

  • The Accreditation Council for Continuing Medical Education (ACCME) sets course development guidelines to ensure accurate, balanced, scientifically justified clinical-practice recommendations, all free of commercial bias.
  • The American Academy of Family Physicians (AAFP) reviews individual courses to ensure that they:
    • are relevant to family practice
    • are evidence-based
    • communicate the risks and benefits of clinical recommendations
    • evaluate a learner’s grasp of the material.

Physicians taking AAFP-approved courses can receive reciprocal continuing education credits from the American Medical Association, (AMA), the American Osteopathic Association (AOA), the College of Family Physicians of Canada (CFPC), and other health professional organizations.

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

###

[1] Johnson LB, Maloney EL. Access to Care in Lyme Disease: Clinician Barriers to Providing Care. Healthcare. 2022; 10(10):1882. https://doi.org/10.3390/healthcare10101882

The authors of this study are Elizabeth L. Maloney, MD, a Minnesota family physician and Invisible’s education co-director; and Lorraine Johnson, JD, MBA, the Chief Executive Officer of LymeDisease.org and the principal investigator of its patient registry and research platform, MyLymeData.

[2] Malkowski AC, Smith RP, MacQueen D, Mader EM. Review of Continuing Medical Education in Tick-Borne Disease for Front-Line Providers. PRiMER. 2023;7:497812. Published 2023 Feb 2. doi:10.22454/PRiMER.2023.497812

New CME course on “Diagnostic Challenges in Lyme disease”

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

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

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

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

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

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

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/

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.

###

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

Lyme testing: The good, the bad, and the ugly

In the free medical education course, “Serologic testing in Lyme disease,” Elizabeth L. Maloney, MD, a Minnesota family physician and tick-borne disease educator, reviews published studies that evaluate current Lyme disease tests and discusses how these tests should be used in diagnosing patients.

I think many experts would agree with me on this point: The United States’ Lyme disease testing strategy is confusing, time consuming, subject to human error, and urgently in need of a technology upgrade. The quickest way to get up to speed on the good, the bad, and the ugly of Lyme testing is to watch Dr. Elizabeth Maloney’s accredited medical education course on the topic. With clarity and precision, Dr. Maloney explains the specificity, sensitivity, and accuracy of the most widely used Lyme tests, discussing how these tests should be used in a clinical setting and illuminating areas for improvement for the next generation of diagnostic approaches.

The underlying message of the lecture is that we can do better, and this is the reason Invisible International is launching a “Tick-borne Illness Diagnostics Development Incubator,” a yearlong collaborative forum designed to bring together teams of multidisciplinary innovators to look at diagnostic protocols, processes, and tests anew, with an eye to accelerating better diagnostic solutions. In this forum, we’ll bring together researchers, diagnostics companies, patient representatives, government representatives, and industry funders to brainstorm on ways to remove roadblocks to innovation. We’ll also feature lectures covering areas such as concept seed funding, getting through the regulatory pipeline, and fundamentals of low-cost diagnostics design.

This incubator is designed to complement the LymeX Tick-Borne Disease Innovation Accelerator, which will be offering prizes for the development for better early Lyme diagnostics. [Lyme X is funded with $25 million from the Steven & Alexandra Cohen Foundation and co-managed with the U.S. Department of Health and Human Services (HHS).] The Invisible Incubator is way to gain a competitive edge in this competition, by making it easy to engage with clinical, lab, and collaborators, and by participating in forums where past and emerging technologies will be discussed.

If you’d like to join the effort to improve Lyme diagnostics, please watch this educational primer on Lyme testing, then join us Saturday, October 30, 1:00 to 2:30 p.m. EST.* Registering at https://www.hack.invisible.international/ (*This presentation will be recorded and posted on Invisible’s website after the event.)

This continuing medical education 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 at https://invisible.international/mission

Other related courses: Basic principles of diagnostic testing7 years of blood-based Lyme disease testingCase studies in early Lyme disease.

Photo credit: Pollyana Ventura, iStock