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Lyme Disease Research and Advocacy: The Pandemic Does Not Slow Them Down

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Lyme disease research

COVID-19 may have dominated news headlines last year, but the pandemic didn’t halt the progress of Lyme disease researchers and advocates who continued their fight for improved diagnostic tools, treatments and awareness.

In fact, it’s pretty surprising just how much the Lyme community accomplished during 2020! Below are some of the biggest Lyme disease-related news stories from the year that no one will ever forget.

Accelerator Pushes for New Lyme Diagnostics and More

The U.S. Department of Health and Human Services and the Steven & Alexandra Cohen Foundation launched the LymeX Innovation Accelerator, a $25 million public-private partnership to fight Lyme disease.

“This is the largest Lyme disease public-private partnership in history,” according to an October press release. “This partnership will be a force multiplier to expedite progress and catalyze change faster than government or other sectors can do on their own.

“Our LymeX mission is to strategically advance Lyme and tick-borne disease solutions in direct collaboration with Lyme patients, patient advocates, and diverse stakeholders across academia, nonprofits, industry and government,” continued the press release. “LymeX will include up to $25 million for Lyme innovation and competition prize awards. The LymeX partnership will prioritize a series of diagnostics prize challenges for Lyme disease to move the next generation of diagnostic tools to market for better patient care.”

The first LymeX diagnostics prize will launch this year.

Feds Announce New National Strategy for Vector-Borne Diseases

Last fall, the Centers for Disease Control and Prevention announced a National Public Health Framework for the Prevention and Control of Vector-Borne Diseases in Humans in coordination with the Environmental Protection Agency and five other federal departments.

The goals of the partnership include developing a better understanding of when, where and how people contract and get sick or die from vector-borne illnesses; creating and improving diagnostic tools for prevention and detection; advancing new drugs and treatments; and implementing products, programs and other tools to prevent, detect and diagnose vector-borne illnesses.

Justin Bieber Announces Lyme Diagnosis

Last January, pop singer Justin Bieber disclosed he has Lyme disease while promoting a new documentary series on YouTube, becoming the latest celebrity to bring awareness to the chronic form of the illness.

Pioneering Lyme Researcher Is Gone Too Soon

The Lyme community lost a fierce warrior, advocate and researcher with the passing of Dr. Neil Spector in June.

At the time of his death, Spector was a highly esteemed cancer researcher at Duke University in North Carolina. In recent years, however, Spector and his team had begun to branch out into researching Lyme disease after he nearly lost his life to the infection.

In his book Gone in a Heartbeat, Spector chronicled his Lyme journey, which started with unexplained heart-related symptoms. By the time Lyme was identified as the cause of his health issues, Spector’s heart was so badly damaged that he required a transplant.

Following his recovery from the transplant, Spector took up the role of Lyme researcher, applying the methods of oncological research to his work with the goal of bringing Lyme treatment into the 21st century.

Last spring, Spector became seriously ill and was hospitalized for a suspected COVID-19 infection. COVID-19 was eventually ruled out, but Spector remained ill for several months until his death on June 14 from complications associated with the Epstein-Barr virus.

Inching Closer to a Lyme Vaccine

In July and October, Valneva SE, a French-based company specializing in vaccine development, reported positive results from two phase 2 trials of its Lyme vaccine candidate VLA15.

The company is seeking regulatory approval to begin a third phase 2 trial, which will include pediatric participants ages 5 and older, during the first quarter of this year.

In an article on Forbes.com, company CEO Thomas Lingelbach indicated Valneva’s Lyme vaccine could be available to the public within the next five years.

New Lyme Treatment Guidelines

New guidelines to prevent, diagnose and treat Lyme disease were released by the Infectious Diseases Society of America, the American Academy of Neurology and the American College of Rheumatology last November.

According to LymeDiseaseAssociation.org, “the guidelines recommend oral antibiotic therapy for most patients with Lyme disease. The recommended duration of therapy is 10 to 14 days for early Lyme disease, 14 days for Lyme carditis, 14 to 21 days for neurologic Lyme disease, and 28 days for late Lyme arthritis. Retreatment may be indicated for individuals with arthritis who have failed a first course of treatment.”

New Research Findings

  • Johns Hopkins researchers pitted 14 various plant extracts against doxycycline and cefuroxime, two of the most common prescription antibiotics used to kill Lyme bacteria. During in-vitro tests, seven plants – black walnut, cat’s claw, sweet wormwood, Mediterranean rockrose, Chinese skullcap, Ghanaian quinine and Japanese knotweed – outperformed the antibiotics. Ghanaian quinine and Japanese knotweed were the most potent at killing Borrelia burgdorferi.
  • Animal and in-vitro studies carried out by researchers at Stanford Medicine showed the prescription antibiotic azlocillin completely kills Borrelia burgdorferi upon onset of the illness and could be an alternative to doxycycline, the most commonly prescribed antibiotic for Lyme disease.
  • Kim Lewis, Northeastern University professor and director of the university’s Antimicrobial Discovery Center, and his team found the gut bacteria of patients with post-treatment Lyme disease syndrome differs from healthy patients and intensive care unit patients. The finding could one day lead to improved Lyme testing.
  • A study published in JAMA Psychiatry found neuroborreliosis patients are not at greater risk of developing psychiatric disease requiring hospitalization or treatment with prescription drugs.
  • Johns Hopkins Medicine researchers confirmed Borrelia burgdorferi significantly alters the immune system, potentially causing the immune system to attack healthy cells in the body.
  • An in-vivo study by Dr. Richard Horowitz “found that an eight-week course of the leprosy drug dapsone combined with doxycycline and rifampin is effective in improving symptoms in 98% of patients suffering from chronic Lyme disease/post-treatment Lyme disease syndrome,” according to an article on LymeDisease.org.
  • During an animal study, Yale researchers discovered a protein called Peptidoglycan Recognition Protein 1 (PGLYRP1), which triggers the immune system upon its exposure to Borrelia burgdorferi. Mice that lacked PGLYRP1 tested positive for higher levels of Borrelia than mice with the protein.

Grants Fund Much-Needed Lyme Research

  • The National Institutes of Health (NIH) awarded a $3.5 million grant to Utpal Pal, PhD, professor of veterinary medicine at the University of Maryland, to create a “next generation” Lyme vaccine using the rabies virus as a delivery platform.
  • The National Institute of Allergy and Infectious Diseases awarded $1.9 million to researchers at West Virginia University for the development of a Lyme disease vaccine.
  • University of Idaho researchers are using $6 million in funding from the National Science Foundation to track the movement of tick-borne diseases across the United States.

Insurance Companies Settle Lyme Lawsuit

Last fall, eight insurance companies settled a federal lawsuit brought by a group of Lyme patients who claimed the companies and the Infectious Diseases Society of America (IDSA) conspired to deny much-needed medical treatment to Lyme patients.

The companies that settled included Blue Cross And Blue Shield Association, Anthem, Inc., Blue Cross And Blue Shield Of Texas, Aetna Inc., Cigna Corporation, Kaiser Permanente, Inc., United Healthcare Services, Inc. and United Healthcare Group Incorporated.

A trial date for the remaining defendants – the IDSA and six members who authored the IDSA’s Lyme treatment guidelines – has been set for this September.

A New Tick and a New Tick-Borne Infection

  • In November, TheBark.com reported a new species of Rickettsia bacteria had been identified in at least three dogs in Illinois, Tennessee and Oklahoma during 2018-19. Last year, the same bacteria was found in four more dogs from southeastern and midwestern states. The Rickettsia family includes Rickettsia rickettsii, the bacteria that causes Rocky Mountain Spotted Fever. It’s still unclear whether the newly discovered bacteria can infect humans.
  • A new hybrid species of tick has been identified in forested land around the city of Novosibirsk in Siberia, Russia. Genetic sequencing has shown it’s a combination of Taiga and Pavlovsky ticks endemic to the area.

CDC Updates Information on Mother-to-Fetus Transmission

Last year, the Centers for Disease Control and Prevention updated its website regarding the possibility of mothers spreading Lyme disease to their fetus during pregnancy.

The CDC’s Lyme transmission page now reads, “Untreated Lyme disease during pregnancy can lead to infection of the placenta. Spread from mother to fetus is possible but rare. Fortunately, with appropriate antibiotic treatment, there is no increased risk of adverse birth outcomes. There are no published studies assessing developmental outcomes of children whose mothers acquired Lyme disease during pregnancy.”

Johns Hopkins Researcher Acknowledges Chronic Lyme Disease

In May, John Aucott, director of the Johns Hopkins Lyme Disease Research Center and associate professor of medicine with Johns Hopkins University, gave credence to what millions of Lyme warriors have known for years: Chronic Lyme is real!

In an article published in The Conversation, Aucott wrote, “Part of the challenge is the lack of definitive tests for chronic Lyme disease. After treatment with antibiotics, the bacteria that causes Lyme disease – Borrelia burgdorferi – is rarely detected, yet symptoms often continue.”

Aucott stressed that just because researchers haven’t discovered the mechanisms that trigger lingering symptoms in some patients doesn’t mean chronic Lyme is a fabricated condition.

“The true extent of this insidious epidemic is still unknown,” he wrote, “but it is clear, based on my experience and work, that it no longer accurate to simply argue that chronic Lyme disease doesn’t exist.”

New Lyme Tests

Family Affected by Lyme Donates $5 Million to Harvard

San Francisco couple Malcolm and Emily Fairbairn donated $5 million to fund Lyme research and education efforts at Harvard Medical School. The money will be used to study “how the bacterial pathogen behind Lyme disease may influence the interplay between immunity, inflammation and the nervous system during infection,” reads a Harvard press release.

Researchers also will look at the disease processes that occur after Lyme infection. Around $1 million of the donation is earmarked for education efforts aimed at helping the public better understand Lyme disease and how to prevent it.

The Fairbairns and their children, Nina and Grant, all live with chronic Lyme disease.

Donna Gregory Burch was diagnosed with fibromyalgia in 2014 after several years of unexplained pain, fatigue and other symptoms. She was later diagnosed with chronic Lyme disease. Donna covers news, treatments, research and practical tips for living better with fibromyalgia and Lyme on her blog, FedUpwithFatigue.com. You can also find her on Facebook and Twitter. Donna is an award-winning journalist whose work has appeared online and in newspapers and magazines throughout Virginia, Delaware and Pennsylvania. She lives in Delaware with her husband and their many fur babies.

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By ProHealth-Editor

Karen Lee Richards is ProHealth’s Editor-in-Chief. A fibromyalgia patient herself, she co-founded the nonprofit organization now known as the National Fibromyalgia Association (NFA) and served as its vice-president for eight years. She was also the executive editor of Fibromyalgia AWARE, the very first full-color, glossy magazine devoted to FM and other invisible illnesses. After leaving the NFA, Karen served as the Guide to Fibromyalgia and Chronic Fatigue Syndrome for the New York Times website About.com, and then for eight years as the Chronic Pain Health Guide for The HealthCentral Network.To learn more about Karen, see “Meet Karen Lee Richards.”

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