2020: The Lyme Year in Review

by Jennifer Crystal

By any definition, 2020 has been a difficult year. When I considered writing my annual “Year in Review” post, I at first thought, can’t we just forget 2020 altogether? But from the Lyme perspective, there actually have been a lot of advances in 2020, and they’re worth celebrating. Below, I’ll outline some of the strides made in Lyme research, fundraising, and awareness in 2020.

Research

While many scientists have been focused on COVID-19 this year, Lyme disease researchers have still been hard at work during the pandemic. Here are some highlights of what Global Lyme Alliance’s research partners have been up to:

• Brian Fallon, MD, MPH (Columbia University) and Michael Benros, MD, PhD (University of Copenhagen) conducted a study of all persons living in Denmark from 1994-2016 (~7 million people). They assessed the risk of mental disorders and suicidal behaviors among all individuals diagnosed with Lyme borreliosis (~17,000 patients). The authors unequivocally concluded that individuals diagnosed with Lyme borreliosis had increased risk of mental disorders, affective disorders, suicide attempts, and suicide. This study assessing the relationship between Lyme disease and psychiatric disorders (link: https://globallymealliance.org/the-quiet-desperation-of-chronic-and-mental-illness/) is the most statistically powerful ever conducted due the sheer number of patients evaluated. The results of this study are under review for publication by The American Journal of Psychiatry.
• Monica Embers, PhD (Tulane University) is studying the relationship between dementia and microbial infection with bacteria, viruses, and fungi. Her continuing studies that include patients diagnosed by Dr. Brian Fallon with neurological Lyme disease have definitely revealed the presence of Borrelia burgdorferi spirochetes by PCR and fluorescence microscopy in three Lyme disease patient autopsy samples. One patient was characterized by Lewy body dementia pathology and disease presentation. Although this latter patient did not meet a clinical definition of Alzheimer’s disease (AD), studies are underway to assess the diseased tissue of AD patient specimens for multiple microbes. These findings are incredibly important because they are the most carefully conducted studies, including hundreds of negative controls, to definitively prove that patient brains actually do contain spirochetes.
• Klemen Strle, PhD (New York State Department of Health) is studying host genetic factors in the development of Lyme Disease and Post Treatment Lyme Disease Syndrome (PTLDS). The objective of this project is to better understand how an individual’s genetic makeup impacts the clinical presentation of Lyme disease. Dr. Klemen has identified a new group of genetic signatures that are found at higher frequency in patients with Lyme disease and appear to be a risk factor for chronic, antibiotic-refractory Lyme arthritis. Dr. Strle is now studying neurological Lyme disease patients to see whether they also have a unique genetic signature that could serve as a marker for genetic tests, to identify those individuals predisposed to neurological complications even before such symptoms develop.
• Nicole Baumgarth, DVM, PhD (University of California-Davis) is studying long-term infections of Borrelia burgdorferi in mice. This work, as well as teaching and training of students, has continued remotely during quarantine.
• Lise Nigrovic, MD, MPH (Boston Children’s Hospital), directs the Pedi Lyme net, a GLA-funded network of emergency room pediatricians in seven states. The network collects biospecimens from suspected tick-borne disease patients. These specimens will be used to develop new diagnostics and to understand Lyme and other co-infecting pathogens in children.

For more on research and publications, check out these previous blogs:
Lyme disease Research Remains Active During Pandemic
Why Good Science Is Crucial 

Fundraising

Despite a tough year for our economy, Global Lyme Alliance and its partners are still working hard to raise money for Lyme disease research, awareness, education, and treatment efforts. In October, GLA and Avril Lavigne hosted a virtual #FightLyme With Avril and Friends concert, in which stars like Wilmer Valderrama, Rob and Marisol Thomas, and Alessia Cara raised funds for and brought awareness to this disease that impacts over 400,000 people a year.

Other organizations such as Ride Out Lyme and the LivLyme Foundation are working as hard as ever on financial support for Lyme disease patients. For more information on fundraising and resources, please visit https://globallymealliance.org/financial-assistance/. To support GLA’s continued efforts during these challenging times, please visit us here at our 2020 Year-End Appeal.

Awareness

In May, as the pandemic was raging, Lyme awareness month was still going on. This year Global Lyme Alliance ran a “One Bite is All it Takes” campaign. The goal of the campaign was to raise awareness about tick prevention, especially this year when people were spending even more time outside. Outreach efforts of this campaign reached over half a million people. The Bang the Drum Foundation matched up to $100,000 in this campaign that raised a total of $152, 680.

And while I’d never wish for a global pandemic-especially one that has taken the lives of so many people—to have to happen in order to bring awareness to Lyme and other illnesses, one silver lining of COVID-19 is that it has put complex illnesses on the map. Lyme patients often feel alone and misunderstood when their lives are on hold, but during the pandemic, the whole world has been paused for illness. People who are otherwise healthy have seen firsthand what life is like for the chronically infirmed, and this has created greater understanding and empathy. Words like “immunocompromised” and “long-hauler” have become part of the vernacular. The world’s eyes have opened to faulty diagnostic tests, restrictions, and the nagging question of, “when will this ever end?”.

As 2020 finally draws to a close, there is much to be grateful for in the Lyme world. I wish for a healthy 2021 for Lyme patients, their families, and the world.

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Opinions expressed by contributors are their own.

Jennifer Crystal is a writer and educator in Boston. Her memoir about her medical journey is forthcoming. Contact her at lymewarriorjennifercrystal@gmail.com.