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.

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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

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

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