Post Treatment Lyme Disease Syndrome Archives

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

Kris Newby on September 20, 2022

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

Kris Newby on July 25, 2022

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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A historic case study on chronic Lyme disease

Kris Newby on December 22, 2021

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

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

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

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

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

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

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

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This course is part of Invisible International’s Education Platform for Tick-borne Illness, funded by the Montecalvo Family Foundation. It currently offers more than 22 free, online Continuing Medical Education (CME) courses on the diagnostics, epidemiology, immunology, symptoms, and treatment of Lyme disease, Bartonellosis, and other tick-borne diseases.

Invisible International, a 501(c)(3) nonprofit organization, is committed to alleviating the suffering caused by invisible illnesses, through education, research, and community empowerment.

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