Some good news for the Lyme disease community

This week Invisible International shines a light on recent progress in the Lyme disease world with 10 reasons to be thankful for the patient advocates and researchers dedicated to reducing the suffering of those with Lyme and other tick-borne diseases.

It’s easy to dwell on the negative with Lyme disease. Forty-seven years after discovery of the first case cluster in Lyme, Conn., there are still no reliable tests or effective vaccines on the market. Among those patients who are treated promptly, about a third go on to suffer from persistent symptoms.

But it’s important to keep things in perspective. Incremental progress is being made, albeit slowly. There’s a growing acknowledgment of the magnitude of the Lyme problem in the medical system, the government, and the media. New diagnostics, vaccines, and therapeutics are finally working their way out of basic research labs and into clinical validation studies. Invisible’s mission is to accelerate progress on all these fronts.

Here are 10 signs of progress for the Lyme disease community:

⁕ The CDC ups the annual Lyme disease cases to 476,000
After analyzing medical insurance claims data on Lyme disease in 2021, the U.S. Centers for Disease Control and Prevention upped their public-facing estimate of 300,000 annual cases to 476,000 per year. “Our results underscore the need for accurate diagnosis and improved prevention,” says the CDC. This updated estimate provides a larger “market size” that may incentivize commercial interests to develop better diagnostics, vaccines, and therapeutics.

⁕ New WHO ICD-11 Lyme disease diagnostics codes
The World Health Organization (WHO) added 15 new medical diagnostic codes for Lyme disease (aka borreliosis) complications, effective on January 1, 2022. Over time, these codes will provide patients with more avenues for medical insurance reimbursement and will enable researchers to better track and analyze Lyme disease complications, treatments, and outcomes. On the international front, the European Union is now requiring mandatory reporting of neuroborreliosis, a move that will help with research funding, prevention, and disease tracking.

⁕ More patient participation in the U.S. research agenda
Patients’ voices are starting to be heard. Since 2017, patient advocates in the HHS Tick-Borne Disease Working Group (TBDWG) have been effective in educating Congress and researchers on the urgent need for better diagnostics and treatments. MyLymeData, a patient information database managed by LymeDisease.org, has quantified time-to-diagnosis, common symptoms, and treatment outcomes, providing a big-data window into the needs of patients. Lastly, the Center for Lyme Action, founded in 2019, organized educational sessions within the US federal government to facilitate the passage of a new appropriations bill that nearly doubled the federal funding for Lyme Disease to $108M in FY21.

⁕ Strong evidence of active Lyme infections after treatment
A recent spate of research studies show that Lyme disease symptoms can persist after recommended treatment protocols, challenging the widely held belief that Lyme disease can always be cured with a short course of antibiotics. Acknowledgement that chronic Lyme is a real medical condition is the first step in justifying the development of more effective treatments for both early and late stages of the disease. A summary of this evidence can be found in here.

⁕ Recognition of the dangers of mixed tick-borne infections
When several university labs started gene sequencing and cataloging all the disease-causing microbes inside ticks, they discovered that polymicrobial infections transmitted through a single tick bite are far more common than previously thought. In the U.S., there are at least 18 disease-causing bacteria and viruses carried by ticks. And new studies have found that the standard U.S. Lyme testing doesn’t detect the newly recognized Lyme-like bacterial species spreading in the West and Midwest. This new information is another reason to design better screening tests and treatment guidelines for mixed tick-borne diseases. Read more here, here, and here.

⁕ Invisible International’s free medical education courses on tick- and vector-borne diseases
Invisible International’s physician education platform is the world’s first accredited curriculum focused on tick- and vector-borne diseases. These virtual courses are available at no cost to medical professionals and patients. Taught by leading experts in tick/vector-borne diseases, this platform is accelerating the movement of the latest diagnostics and treatment advice to the frontlines of medical care. New courses are added monthly and are accredited by the American Academy of Family Physicians for AMA credit. This effort is funded by the Montecalvo Family Foundation. To help Invisible integrate these courses into medical school curriculums across the U.S. and abroad, click here.

⁕ New therapeutic/treatment options on the horizon
A relatively new technology called “high throughput drug screening” enables researchers to place Lyme bacteria in an array of tiny wells and expose them to thousands of FDA-approved chemical compounds and drugs to see which ones are best at killing the microbes. The best and safest drug candidates are then retested in live mice, and, eventually, in humans. This process saves the time and money associated with large human clinical trials and speeds up the regulatory approval process. 
 
⁕ The LymeX Diagnostics Prize
The weak link in reducing the public health burden of tick-borne illnesses is the lack of fast, cheap, and accurate diagnostics. Lyme treatment is often delayed because the screening tests aren’t reliable in the first month after infection and not everyone produces or notices a bullseye rash. In the later stages of the disease, antibody testing can be unreliable in the sickest patients, those whose antibody production may be hobbled by concurrent infections or a weak immune system. LymeX, a public-private partnership, will be offering large prizes to incentivize the development of better Lyme diagnostics. This effort is part of the $25 million public-private partnership between the  U.S. Department of Health and Human Services (HHS) and the Steven & Alexandra Cohen Foundation. Invisible is joining the field-wide effort to support new diagnostic development by organizing a “Tick-borne Illness Diagnostics Development Incubator”, a yearlong collaborative forum designed to help bring these diagnostics solutions to the market faster. This effort is funded by the Lovell Family Healthcare Foundation.

⁕ Studies revealing the suicide/mental health risks of Lyme and co-infections
In a large retrospective study of nearly 7 million subjects, U.S. and Danish researchers report that patients who received a hospital diagnosis of Lyme disease—inpatient, outpatient, or at the ER—had a 28 percent higher rate of mental disorders and were twice as likely to have attempted suicide post-infection, compared to individuals without the diagnosis. Studies like these show that undertreated Lyme disease can lead to serious mental illness, and that it should be a differential diagnosis for certain patients with sudden-onset depression, suicidal thoughts, and other mental disorders. Read more here, here, and here.

⁕ A breakthrough in public awareness of the tick-borne disease problem
A growing number of mainstream journalists, writers, and professionals have gone public with their personal stories on the emotional, financial, and societal toll of tick-borne illnesses. This is an essential step in mitigating the social stigma, medical gaslighting, and myth that Lyme disease is easy to diagnose, treat, and cure. Notable new additions to this genre include “Chronic,” “The Invisible Kingdom,” “The Deep Places,” “What Lurks in the Woods,” and “Bitten” (my book). Invisible’s “Storytelling for Change” initiative aims to continue this momentum with a team of clinicians, researchers, and writers collaborating to produce mass media stories that explain emerging science and promote understanding of the suffering and social injustices laid on families dealing with invisible illness.

Help Invisible International do more to create positive change and scientific advancement for the Lyme disease community. Make a gift today.

For weekly updates on all things related to Lyme disease and other invisible vector-borne diseases, sign up for Invisible International’s newsletter here: https://invisible.international/newsletter/

Lyme disease heightens risk of mental disorders, suicidality

A Columbia-led study advises physicians and patients be aware of psychiatric symptoms, particularly the first year after diagnosis

In a new study, U.S. and Danish researchers report that patients who received a hospital diagnosis of Lyme disease—inpatient, outpatient, or at the ER—had a 28 percent higher rate of mental disorders and were twice as likely to have attempted suicide post-infection, compared to individuals without the diagnosis.

The study, a collaboration of Columbia University and the Copenhagen Research Centre for Mental Health, is believed to be the first large, population-based study examining the relationship between Lyme disease and psychiatric outcomes.

The research appears in the July 28 online edition of the American Journal of Psychiatry (link is external and opens in a new window)

“It is time to move beyond thinking of Lyme disease as a simple illness that only causes a rash,” said Brian Fallon, MD, MPH, a psychiatrist with the New York State Psychiatric Institute and Columbia University who is the lead author of the paper. “In addition to the risk of severe cardiac, rheumatologic, and neurologic problems, Lyme disease can cause severe mental health problems as well.”

Dr. Fallon, one of the foremost researchers of the neuropsychiatric effects of Lyme disease, is director of the Lyme and Tick-borne Diseases Research Center at Columbia. The team of investigators on the study includes Michael Benros MD, PhD, principal investigator; Trine Madsen, PhD, co-first author; and Annette Erlangsen, PhD, all psychiatric epidemiologists at the Research Centre for Mental Health.

Higher Rate of Death by Suicide

To conduct their study, the researchers analyzed the medical record diagnoses of nearly 7 million people living in Denmark over a 22-year period, comparing the mental health data of individuals after a hospital-based diagnosis of Lyme disease to the rest of the Danish population who had never had a Lyme diagnosis recorded in the national medical register.

Patients who had a history of mental disorder or suicidality prior to the Lyme disease diagnosis were excluded from the analysis.

The analysis revealed that in addition to patients with Lyme disease being at greater risk of mental disorders and suicide attempts, they also had a 42 percent higher rate of affective disorders, such as depression and bipolar disorder, and a 75 percent higher rate of death by suicide than those without the diagnosis.

Additionally, having more than one episode of Lyme disease was associated with a higher rate of mental disorders, affective disorders, and suicide attempts.

Half a Million People Treated for Lyme Disease Each Year

Each year nearly half a million people in the United States are diagnosed and treated for Lyme disease, also known as Lyme borreliosis, caused by a bacterium carried by deer ticks and transmitted to humans through their bite. The majority of cases have been reported in the northeastern, mid-Atlantic, and north-central states, but the geographic range where ticks and tick-borne diseases are found continues to expand.

Although most cases can be cured with a two- to four-week course of oral antibiotics, 10-20 percent of patients may suffer with symptoms of pain, fatigue, or difficulty thinking that last for months to years after treatment.

Several studies have pointed to a connection between Lyme disease and cognitive disorders months to years after antibiotic therapy or in people with untreated infections. In severe cases, individuals with late-stage Lyme disease may experience impaired concentration, irritability, memory and sleep disorders, and painful nerve dysfunction.

Dr. Michael Benros emphasizes that most people do not develop severe mental health issues after Lyme borreliosis. During the study period, only 7 percent of the nearly 13,000 individuals with a hospital diagnosis of Lyme disease followed up with hospital clinicians complaining of symptoms subsequently diagnosed as mental disorders.

Clinicians and Patients Should Be Aware of Risk

But findings of the study, the researchers said, are emblematic of a trend in Lyme disease cases that should not be overlooked. The Danish medical registry includes only psychiatric diagnosis made in a hospital setting – not by clinicians in communities – and it is likely that the number of individuals with new onset mental health problems following infection is much higher.

“This nationwide study confirms the association between Lyme disease and psychiatric disorders,” Dr. Benros said. “Treating clinicians and patients should be aware of an increased risk of mental health problems, particularly during the first year after a severe Lyme disease infection, and if mental health issues arise, patients should seek treatment and guidance. “

The study, “Lyme Borreliosis and Associations with Mental Disorders and Suicidal Behavior: A Nationwide Danish Cohort Study,” was funded by the Global Lyme Alliance, Inc.

A message from Invisible’s Chief Medical Officer

The groundbreaking study on Lyme and mental health from Columbia University shines a light on an utterly shocking statistic: People suffering from Lyme borreliosis have “a two-fold higher risk of dying by suicide than those without Lyme disease.”

As a clinician who has been treating Lyme patients for years, I see many reasons for this preventable loss of life. The biggest factor, in my opinion, is that these sufferers feel abandoned and stigmatized by the medical system and society at large. Lyme disease has no reliable test, no vaccine, and no effective treatments in the chronic stages of the disease. Yet physicians and family members often tell them that their very real disease is “all in their heads.” They feel invisible.

To respond to this urgent need, Invisible International is planning two important projects. The first is the Tick Bytes Clinical Data Research Platform, a nationwide clinical data repository that will provide quality tick-borne illness patient data to researchers to facilitate the development of better symptomologies, diagnostic approaches, and treatment protocols. We are currently working to fund 10 data-collection sites in hot spots across the country.

The second is a no cost mental health counseling and group support service for tick-borne illness patients. Led by psychiatrists and clinicians with expertise in Lyme disease, we will create a robust training and education platform for mental health providers. This platform will be tailored for different age groups and for caregivers of patients with tick-borne illness.

Please consider helping us fund these two trailblazing initiatives. Contact us via email or by visiting our giving webpage at https://invisible.international/give

Dr. Nevena Zubcevik
nev@invisible.international

Invisible International, a 501(c)(3) nonprofit organization, is dedicated to reducing the suffering and social marginalization associated with invisible illnesses through innovation, education, and data-driven change projects. Invisible’s core team includes board-certified health-care providers in Infectious Disease, Internal Medicine, Family Medicine, Psychiatry, Pharmacy, Pathology, and Physical Medicine and Rehabilitation, many trained at or are affiliated with top-tier universities such as Harvard, Stanford, MIT, Brown, UC Berkeley, UC San Francisco, the US Air Force Academy, University of Virginia, and University of Pittsburgh.

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