Lyme disease Archives

Some good news for the Lyme disease community

Kris Newby on April 19, 2022

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/

Tulane researcher asks, “Could chronic Lyme contribute to Alzheimer’s dementia?”

Kris Newby on April 13, 2022

In 2019, the late-great-science-writer Sharon Begley wrote an insightful article, “The maddening saga of how an Alzheimer’s ‘cabal’ thwarted progress toward a cure for decades.”

Begley’s reporting described how a powerful group of researchers became fixated on one theory of Alzheimer’s causation at the expense of all others. Their hypothesis: that Alzheimer’s cognitive decline was caused by neuron-killing, beta-amyloid protein clumps in the brain, and that if you dissolved the clumps, the disease process would stop.

As this theory hit a brick wall, Begley showed how the actions of the cabal harmed patients: “…for decades, believers in the dominant hypothesis suppressed research on alternative ideas: They influenced what studies got published in top journals, which scientists got funded, who got tenure, and who got speaking slots at reputation-buffing scientific conferences.”

Decades later, with no cure or effective drugs for Alzheimer’s dementia, some researchers are gathering evidence on a different causation theory — that dementia could be triggered by any number of chronic infectious diseases, and that amyloid plaques are a byproduct of an active infection, not the cause.

One of these researchers is Monica Embers, PhD, an associate professor of microbiology and immunology at the Tulane National Primate Research Center. She’s also the leading expert in identifying treatments that can eradicate Lyme bacteria infections in nonhuman primates, our closest mammalian relatives. In her new continuing medical education course, “Chronic Infection and the Etiology of Dementia,” she lays out the evidence that the Lyme bacteria could be one possible cause of dementia.

Her theory is this: When pathogens like the Lyme bacteria sneak past the blood-brain barrier, the immune system doesn’t allow protective killer cells from the entering the inflexible brain cavity, because resulting brain inflammation and swelling could lead to death. Instead, it encapsulates invading microbes with protein clumps, called beta-amyloid plaques or Lewy bodies, to stop the infection. As a person ages, the bodily processes that clean up this “brain gunk” slows, resulting in protein accumulation that impedes brain signaling and kills neurons.

In her 31-minute course, Dr. Embers describes the clinical symptoms of Alzheimer’s and Lewy body dementia, the impact on public health, genetic risks, and the list of infections associated with dementia-like symptoms.

The course also reviews a well-documented case study about a 54-year-old woman who was treated for the Lyme bacteria (Borrelia burgdorferi), developed dementia, then died 15 years after the initial infection. After death, B. burgdorferi was identified by PCR (DNA detection) in her brain and central nervous system (CNS) tissues, and by immunofluorescent staining of the bacteria in the spinal cord. (For more, read this peer-reviewed study.)

Dr. Embers and her study’s co-authors conclude, “These studies offer proof of the principle that persistent infection with the Lyme disease spirochete may have lingering consequences on the CNS. Published in postmortem brain autopsy images and extensive pathology tests are a compelling reason to pursue this line of scientific inquiry.”

You can watch this free CME here.

To help us launch our CME curriculum in hospitals and medical schools, donate here.

Invisible International’s Education Platform for Tick-borne Illness is funded by the Montecalvo Family Foundation. This platform currently offers 24 free, online Continuing Medical Education (CME) courses on the diagnostics, epidemiology, immunology, symptoms, and treatment of Lyme disease, Bartonellosis, and other vector-borne diseases.

Do I Have Lyme Disease? A Physician Offers Advice.

Christine Green, MD on January 27, 2022

Christine Green, MD, is a Stanford-trained, board-certified family medicine physician with 30 years of experience treating patients with tick-borne illness. In this Q&A, she discusses common symptoms and the diagnostic process for Lyme disease and other tick-borne diseases.

Q: I’m achy and tired all the time. Could I have Lyme disease?

The answer is yes. When a patient comes into my clinic for the first time, I take down their clinical history. If I suspect tick-borne disease, I ask if they’ve been exposed to ticks or tick habitats. Have they observed any rashes? The typical Lyme rash expands and is ring-like, usually not itchy or painful. If it’s under a person’s hairline, between the toes, or on the back of the body, it may not be noticed. At least 21% of Lyme patients, and probably more than 50%, never see a tick or a rash.

Early Lyme patients present with flu-like symptoms. Tick bites and resulting symptoms often occur in the summer, but in my California practice, Lyme season may overlap with the fall/winter flu season, confusing the diagnostic picture.

Next, I do a complete physical exam, with an emphasis on neurological deficits, such as loss of balance, tremors, facial asymmetry (Bell’s Palsy), and asymmetric reflexes. Then, I ask about the progression of their symptoms over time. In the first few months of Lyme disease, patients often experience malaise, fatigue, mild-to-severe headaches, nerve pain or tingling in the hands or feet, all in a relapsing-remitting course. In other words, the symptoms wax and wane.

If Lyme is diagnosed four or more months after symptom onset, the picture of the disease is different and variable. The longer between infection and diagnosis, the higher likelihood that more bodily systems have been invaded. Late-stage patients tend to have peripheral nerve symptoms that come and go, and symptoms that migrate to joints, muscles and/or nerves. Most patients with late Lyme have encephalopathy, inflammation of the brain that reduces blood supply in some areas. It can manifest as sleep problems, memory issues, word-recall problems, or difficulty reading or carrying out executive functions, the mental processes that enable us to plan, focus, remember instructions, and juggle multiple activities. For instance, a person who organizes large events might find that they have trouble completing and sequencing tasks. Things that used to take minutes, take hours.

Patients can also experience cardiac symptoms, including irregular heartbeats, chest pain, or dizziness. These patients often come in misdiagnosed with old age, depression, anxiety, or hypochondriasis (preoccupation with an imagined illness). Another presentation of this disease is chronic pain. The pain can be widespread and migrate around the body. These patients often come in with a diagnosis of fibromyalgia or new onset migraine headache.

Q: What’s the best test for diagnosing Lyme disease?

First and foremost, Lyme disease, as with any disease, should be diagnosed based on a clinical history and physical exam, not by test results alone. It’s important to note that the complex, conservative two-tiered testing criteria for “CDC positive cases” was developed for disease-tracking only, and it shouldn’t be used by physicians as the sole criteria for diagnosis or denying treatment to patients. What’s more, not all Lyme tests are created equal. The major labs typically look for only one strain of Lyme bacteria, the B31 strain of Borrelia burgdorferi. I prefer using specialized labs that test for multiple Lyme strains. Three of the labs I use are MDL, Galaxy, and Igenex.

One tick can inject multiple species of disease-causing microbes in single blood meal, so, based on symptoms, I sometimes test for other tick-borne infections. If a patient has night sweats, shortness of breath, stabbing chest pains, or autonomic symptoms (dizziness, nausea, vertigo, flushing), I’ll test for babesia, a malaria-like red blood cell infection. For a pinprick rash on the extremities and/or severe illness, I’ll test for spotted fever. Bartonellosis can present in many ways, including neuropathy, or neuropsychiatric symptoms, such as panic attacks, rages, psychosis, and obsessive-compulsive disorders.

Q: Once diagnosed, how should you treat Lyme disease?

Research over the last three decades suggests that Lyme bacteria have multiple ways of evading the human immune system and that treating acute Lyme with 21 days of antibiotics fails approximately a third of patients. For that reason, I treat in two phases. For early Lyme, I treat with four weeks of doxycycline, amoxicillin, or cefuroxime antibiotics. I follow this up with four more weeks of drugs that prevent and eradicate “persister” forms of the bacteria. The persisters are drug-tolerant and can revert to an active infection once the antibiotics are stopped.

I treat late Lyme patients with severe degenerative neurologic or rheumatologic cases aggressively. As noted above, the very sick patients frequently have a mixture of tick-borne infections. For these patients, I choose a combination of oral or, when needed, intravenous antibiotics that target the pathogens known to be present.

Q: Can you cure chronic Lyme disease?

In my practice, I’ve helped many of my tick-borne disease patients return to full health. Every patient is unique, with different genetics, co-morbidities, and co-infections. To me, the important thing is to evaluate clinical response and not to cut off treatment at some arbitrary end point. I assess symptoms at the beginning of each visit, then treat until symptoms improve or resolve. For any patient who is ill for an extended time, after the illness is controlled, I initiate rehabilitation protocols to help the person feel normal again. A patient must become fit to fully recover from a protracted state of ill health.

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For a checklist of common Lyme disease symptoms or to find an experienced tick-borne disease physician, visit the Lymedisease.org website.

To learn more about diagnosing and treating vector-borne diseases, watch Invisible International’s online, evidence-based physician medical education courses.

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

Tulane researcher discusses the evidence for persistent Lyme and promising new treatment strategies

Kris Newby on September 14, 2021

Monica Embers, PhD, director of the vector-borne disease research center at Tulane University School of Medicine, summarizes evidence that suggests that Lyme bacteria can survive long after standard treatment protocols in a new online medical education course. She also discusses promising new treatment strategies for eradicating these bacteria.

Emerging evidence from animal studies suggest 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. This begs the question—Are our current Lyme treatment protocols all wrong?

In the accredited continuing medical education course, “Antibiotic efficacy for treatment of Lyme disease,” Monica Embers, associate professor of microbiology and immunology and a leading expert in investigating B. burgdorferi infections in a nonhuman primate model, summarizes current Lyme treatment protocols, key studies on antibiotic efficacy, and new strategies aimed at curing the infection.

“It’s clear from the cumulative evidence that persistent Lyme disease is a common occurrence and that we urgently need to explore more effective treatment strategies,” said Embers.

This new 32-minute course, part of Invisible’s Montecalvo Platform for Tick-Borne Illness Education, has been approved for 0.5 CME credit by the American Academy of Family Physicians. Each CME course includes a list of studies cited in the lecture.

One of the more surprising revelations in the lecture is that doxycycline, the drug of choice for treating adults with Lyme disease, doesn’t clear all of the causative bacteria. It only slows their proliferation, disrupting cell-wall creation as each forms a copy of itself by splitting into two. When the Lyme bacteria sense doxycycline, they shapeshift into spherical, dormant forms called persister cells, so they can wait out the chemical storm.

Dr. Embers backs up these claims with a series of thoughtfully designed experiments on nonhuman primates, our closest mammalian relatives. In one study, she treated five rhesus macaques with a 28-day course of doxycycline and five without. A year after the trial began, nine out of the 10 macaques, both treated and untreated, showed signs of ongoing illness and live Lyme spirochetes were isolated. In addition, those that received doxycycline had more bacteria in the brain.

The study’s conclusion: “We observed evidence of persistent, intact, metabolically-active B. burgdorferi after antibiotic treatment of disseminated infection and showed that persistence may not be reflected by maintenance of specific antibody production by the host.”

Simply put, treating with doxycycline didn’t seem to be a cure, and the Lyme bacteria appear to have ways of suppressing antibody production so that it can fly under the radar of the immune system.

Given this evidence, why does the medical establishment still recommend doxycycline as a front-line Lyme treatment? One reason is that doxycycline appears to be effective at most early infections, along with Rocky Mountain Spotted Fever and anaplasmosis, other serious tick-borne diseases that are often mistaken for Lyme disease in the early stages.

Embers also says that treatment study results may be skewed by the overuse of mice as test subjects. Mice are cheap, but they’re lousy stand-ins for humans. They’ve evolved alongside ticks to serve as a living holding tanks for the Lyme bacteria, so they don’t get as sick as humans when infected.

Lyme disease is the fastest vector-borne illness in the United States, with an estimated 476,000 new cases a year, according to the Centers for Disease Control. Approximately 10 to 20% of those treated with antibiotics go on to experience disabling long-haul symptoms, such as severe fatigue, joint/muscle pain, brain fog, and neurologic symptoms. There have been no human treatment studies published in over 20 years, and only 0.30% of the National Institutes of Health Lyme research budget has been focused on human treatment studies in the last five years (2015-2019).

At the end of lecture, Dr. Embers cited several lab studies (bacteria-in-a-dish) and animal studies showing that a cocktail of three antibiotics are highly effective in eradicating the Lyme bacteria. (This study from Johns Hopkins found that a combination of daptomycin, cefoperazone and doxycycline was effective in eradicating persister cells.) But of course, clinical trials are needed to validate these findings.

One of the ways Invisible International is working to accelerate the movement of treatment evidence to patient care is by launching Tick Bytes, a centralized clinical data repository that provides quality de-identified tick-borne illness patient data to researchers nationwide. Researchers can mine this data using advanced biostatistical methods to discover symptom profiles for mixed infections and treatment regimens that work. With this precision medicine approach, more quality evidence will reach physicians, insurers, and the government. This in turn will improve diagnostics and treatment options, leading to better outcomes, insurance coverage, and more sophisticated understanding of tick-borne diseases. Invisible is currently looking for funding for 10 data collection sites.

Dr. Embers’ CME 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 on our website.

Invisible International is a 501c3 that aims to solve challenges related to tick-borne illness through research and physician education. Its core team includes health care providers and scientists specializing in Infectious Disease, Internal Medicine, Family Medicine, Pathology, Pharmacy, Psychology, and Physical Medicine and Rehabilitation, as well as innovation and healthcare leaders.

Image credit: Hailshadow at iStock

Lyme disease heightens risk of mental disorders, suicidality

Carla Cantor, Columbia University on August 17, 2021

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.

Harvard study identifies symptom clusters in Lyme patients with persistent symptoms after treatment

Kris Newby on July 23, 2021

A retrospective study of 270 post-treatment Lyme patients identified the most debilitating neurological symptoms, paving the way for future studies on root causes of disease and better treatments.

The largest study to-date characterizing ongoing symptoms [1] of Lyme patients after antibiotic treatment has been published by a group of investigators at Harvard-affiliated hospitals and Invisible International, a non-profit organization. They also examined the relationship between symptom severity and perceived disability, identifying five of the most debilitating symptom categories — fatigue, cognitive deficits, neuropathy (nerve numbness or weakness in the extremities), migraine headaches, and mood disorders.

The study lays a scientific foundation for future research that will help the growing ranks of post-treatment Lyme patients suffering from lingering symptoms. Lyme disease is the fastest vector-borne illness in the United States, with an estimated 476,000 new cases a year, according to the Centers for Disease Control. Approximately 10 to 36% [2] of those treated with antibiotics go on to experience disabling long-haul symptoms, such as severe fatigue, joint/muscle pain, cognitive problems, and neurologic symptoms.

Patient impairment was assessed through medical chart reviews of 270 individuals who had been treated for Lyme borreliosis through the Dean Center for Tick-Borne Illness at Spaulding Rehabilitation Hospital Boston, a Harvard affiliate, between 2015 and 2018. Symptom and disability data was also collected through scientifically validated questionnaires. Symptom clusters were defined as two or more symptoms occurring together, indicating that they might share the same triggering mechanism. This approach, used in other chronic conditions, such as cancer and inflammatory bowel disease, helps guide researchers in identifying root causes and better treatment strategies.

“This study is an important first step in figuring out why these patients aren’t getting better,” said Dr. Nevena Zubcevik, DO, the first author on the study and the former co-director of the Dean Center for Tick Borne Illness. “Going forward, we’re taking what we’ve learned to set up a multi-institutional clinical data repository that will provide high quality, de-identified tick-borne illness patient data to any interested researcher.”

To expedite the discovery of clinical treatments for patients suffering with chronic tick-borne illness, Dr. Zubcevik is now leading the Tick Bytes Clinical Data Research Platform through Invisible International, in her role as Chief Medical Officer. The resulting open-source data would enable researchers to access prospectively acquired clinical and laboratory data, as well as possible biorepository specimens, on a large group of well-defined pediatric and adult patients with complex Lyme disease. This repository would also collect data on mixed infections and/or environmental/toxic exposures, influences that often worsen the outcomes of these patients. Using this precision-medicine approach, more quality evidence will reach physicians, insurers, and government. This, in turn, will improve diagnostics and treatment options, leading to better outcomes, insurance coverage, and government funding. Invisible is currently raising funds to launch 10 data collection sites at research institutions, community clinics, and hospitals across the nation.

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.

This study and Invisible International’s Change Platform for Tick-borne Illness were funded by generous donations from Mark and Eileen Lovell. The organization is currently seeking additional support to expand its TickBytes data collection sites. To learn more about how you can help, go to: https://invisible.international/give

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

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Photo credit: francescoch/iStock

End Notes

[1]

Marques A. Chronic Lyme disease: a review. Infect Dis Clin North Am. 2008;22(2):341-viii. doi:10.1016/j.idc.2007.12.011

Asch ES, Bujak DI, Weiss M, Peterson MG, Weinstein A. Lyme disease: an infectious and postinfectious syndrome. J Rheumatol. 1994 Mar;21(3):454-61. PMID: 8006888. [Retrospective evaluation of 215 Lyme patients who were diagnosed and treated > 1 year prior. Found/described persistent symptoms in 114 (53%).]

Clarissou J, Song A, Bernede C, et al. Efficacy of a long-term antibiotic treatment in patients with a chronic Tick Associated Poly-organic Syndrome (TAPOS). Med Mal Infect. 2009;39(2):108-115. doi:10.1016/j.medmal.2008.11.012. [Open-label prospective study of 100 patients after treatment for chronic TAPOS (Tick Associated Poly-Organic Syndrome), evaluating their evolution on prolonged antibiotics.]

Horowitz RI, Freeman PR. Precision Medicine: The Role of the MSIDS Model in Defining, Diagnosing, and Treating Chronic Lyme Disease/Post Treatment Lyme Disease Syndrome and Other Chronic Illness: Part 2. Healthcare. 2018; 6(4):129. https://doi.org/10.3390/healthcare6040129. [Patient symptom survey and retrospective chart review of 200 patients with chronic Lyme/PTLDS.]

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Experts discuss strategies for fighting those Lyme symptoms that won’t go away

Kris Newby on July 6, 2021

Two tick-borne disease experts, a physician and a researcher, discuss the many ways Lyme bacteria evade the immune system and promising new strategies for fighting lingering symptoms.

People with long-haul Lyme disease symptoms are often sidelined by the medical community. In a 2019 survey of 1,900 Lyme patients, 74% reported being treated disrespectfully by a healthcare provider, and 67% said that they postponed or avoided medical treatment due to discrimination, disrespect, or difficulty obtaining care.

Many of these patients develop chronic Lyme because the latest evidence on diagnostics and treatment isn’t reaching busy frontline physicians, who misdiagnose or undertreat. Some health-care providers don’t know that about 30% of Lyme sufferers don’t see the classic Lyme rash. Or that the Lyme screening tests aren’t reliable in the first month after infection. Or that 10 to 20% of the Lyme patients fail to recover after taking the short course of antibiotics recommended by the Infectious Diseases Society of America (IDSA). And, to add insult to injury, there have been no new NIH-funded chronic Lyme treatment trials for more than 20 years — and Lyme sufferers need relief now.

Invisible International aims to fuel meaningful change for patients by accelerating the flow of new medical knowledge to treating physicians through the Bench-to-Bedside E-Colloquium, a monthly series of interactive discussions between world class researchers and boots-on-the-ground clinicians. The objective is to educate the medical and patient communities about promising new research and treatments, and to build bridges between these communities. Each colloquium will be annotated with the latest evidence from peer-reviewed journal articles.

The inaugural E-Colloquium tackles the controversial topic of “Borrelia persistence,” addressing the questions, “How does the Lyme bacterium, Borrelia burgdorferi, survive a recommended dose of antibiotics in the human body, and what treatment strategies can be used to eradicate the surviving organisms?”

The panel features Kenneth Liegner, MD, a distinguished internist who has been diagnosing and treating Lyme disease and related disorders since 1988, and Monica Embers, PhD, associate professor of microbiology and immunology and the director of the vector-borne disease research center at Tulane University School of Medicine. Embers is a leading expert in identifying treatments that can eradicate B. burgdorferi infections in primates, our closest mammalian relatives. The discussion is moderated by Christine Green, MD, a Stanford-trained and board-certified family medicine physician with 30 years of experience treating patients with tick-borne illness.

Invisible International’s Education Platform for Tick-borne Illness is funded by the Montecalvo Family Foundation, and the organization is currently seeking support to expand the E-Colloquium program. This platform currently offers more than 20 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 dedicated to reducing the suffering and social marginalization associated with invisible illnesses through innovation, education, and data-driven change projects. Their 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 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.

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

Image credit: Happy Photon, iStock

Lyme advocates weigh-in on research priorities at HHS-LymeX workshop

Kris Newby on June 8, 2021

Invisible’s Chief Medical Officer, Dr. Nevena Zubcevik, joins other Lyme patient advocates in setting priorities for the largest public-private research initiative launched since Lyme disease was discovered.

Last October, the Steven & Alexandra Cohen Foundation announced that they would donate $25 million to the LymeX Innovation Accelerator, a research prize competition to develop better tick-borne disease diagnostics. The competition recently entered its next phase, the collection of ideas from disease stakeholders — patient representatives, the government, academic medicine, and industry — to help define the prize guidelines.

To facilitate this process, the U.S. Department of Health and Human Services (HHS) hosted a LymeX Roundtable Webinar on April 28, 2021, which featured presentations and workshops with key stakeholders.

Dr. Nevena Zubcevik, Invisible’s Chief Medical Officer, was the workshop’s first lightning talk speaker, and in her presentation (starting at minute 37:43), she succinctly summarized why these prizes are so desperately needed: Only about 1 percent of the National Institutes of Health’s Lyme disease research budget (2015 thru 2019) went towards exploring better treatments for the nearly 500,000 Americans who get Lyme disease each year. Her emphatic message to the audience — We need more patient-focused solutions to bring relief to the millions suffering from tick-borne diseases today.

Invisible is working to remedy the treatment gap by launching the Tick Bytes Clinical Data Research Platform. This multi-institutional clinical data repository will provide quality de-identified tick-borne illness patient data to researchers. Researchers can then mine this data using advanced biostatistical methods to discover symptom profiles for mixed infections and treatment regimens that work. With this precision medicine approach, more quality evidence will reach physicians, insurers, and government. This, in turn, will improve diagnostics and treatment options, leading to better outcomes, insurance coverage, and government funding. Invisible is currently raising funds to launch 10 data collection sites at research institutions, community clinics, and hospitals across the nation. To learn more about how you can help, go to: https://invisible.international/give

The Cohen’s $25 million prize fund represents a whopping 50-percent boost to the 2021 NIH Lyme-related research budget, and, most importantly, it allocates more funds to urgently needed early diagnostic tools, since in the first three weeks after infection, the standard tests only detect Lyme disease 29 to 40 percent of the time.

For an overview of the devastating impact of poor testing and treatment options on Lyme patients, read the new LymeX publication, “The Health+ Lyme Disease Human-Centered Design.” To join the LymeX online community, go to: https://lymex.crowdicity.com/

Invisible International is a 501(c)(3) nonprofit foundation dedicated to reducing the suffering associated with invisible illnesses and social marginalization through innovation, education, and change projects. To donate or to learn more about our many programs to reduce the impact of tick-borne illness, visit the website: https://invisible.international

How LymeTV is crushing those evil ticks seeking world domination

Kris Newby on May 19, 2021

Tick bites woman. Woman bites back, by launching LymeTV, a media foundation that aims to end the ignorance surrounding tick-borne diseases.

While Adina Bercowicz was applying to graduate school, she began experiencing a variety of mysterious symptoms, including crushing fatigue, joint aches, and frequent mind-blowing headaches. She thought it would go away in a few days, but it didn’t. And for the next two years, she kept visiting doctors, searching for relief from her forever illness. Her symptoms progressed into debilitating chronic pain and a significant cognitive decline, so bad that she couldn’t even recognize her own car.

She had to put her education and life on hold. That is, until a Miami-based physician recognized that Adina’s symptoms were similar to those of her daughter who was suffering with Lyme disease. To explore that possibility, her medical team extracted spinal fluid and a pathologist discovered that it was teeming with Borrelia burgdorferi, the corkscrew-shaped, tick-borne bacterium that causes Lyme disease. It was direct evidence that she had Lyme encephalitis, brain inflammation that can cause memory and concentration issues, headache, mild depression, irritability, fatigue, or excessive daytime sleepiness.

But despite years of treatment, she couldn’t get better, and she ultimately ended up in the intensive care unit to undergo allergy desensitization to ceftriaxone, the best antibiotic for treating her brain infection. Around the same time, it was discovered that the tick or ticks that bit her had also transmitted other pathogens along with Lyme, including the Rocky Mountain spotted fever bacterium, and babesia and anaplasma, two microbes that infect human blood cells.

She was left aghast with the question, why did it take five years to figure this out and get treated? Although her treatment relieved many of her major symptoms, she was left with the permanent damage caused by years of an unchecked infection.

“A tick bite can kill you,” says Adina, to those who think that these diseases are easy to diagnose, treat, and cure.

Adina’s frustration with the medical community’s lack of knowledge about tick-borne diseases inspired her to start LymeTV.org. This foundation aims to educate physicians and the public on the latest tick-borne disease science through TV commercials, a documentary, community events, and prevention resources targeting school-aged children. Yan Zelener, PhD, with degrees from MIT and Columbia University, is LymeTV’s director of science and research and Adina’s husband.

LymeTV’s latest project, the Tick Jedi School Health Program, features a fun, interactive, educational cartoon that teaches kids about tick avoidance, tick checks, and Lyme disease basics. (The animation’s screenwriters have written episodes for Disney Channel and Disney—ABC Television Group, ensuring an age-appropriate learning experience.) Designed for children from five to twelve years old, the program also comes with prevention posters and workbooks that engage kids with fun educational activities.

This project was a top-five winner of the Invisible International 2020 Hackathon, which was focused on creating education and awareness around tick-borne illness. Hackathon funding is helping LymeTV with outreach to schools and summer camps.

Tick-borne illnesses like Lyme disease affect children more than any other age group, yet only about 1 in 10 check for ticks after playing outside. Lyme disease is the fastest growing vector-borne illness in the United States, with an estimated 476,000 new cases a year, according to the Centers for Disease Control. If ticks take a blood meal undetected, they can transmit other dangerous bacteria and viruses to humans and pets, including the Babesia parasite, the Rocky Mountain spotted fever bacterium, and the Powassan virus. Prevention through tick checks and avoidance is the best way to stay safe.

LymeTV is a 501(c)(3) a nonprofit foundation based in Portland, Maine, focused on reducing the incidence of dangerous tick-borne diseases. Learn more about the Tick Jedi program and try out their interactive cartoon here: https://tickjedi.com

Schools, camp, and other organizations can register here for the program’s complete set of educational resources.

Invisible International is a 501(c)(3) nonprofit foundation dedicated to reducing the suffering associated with invisible illnesses and social marginalization through innovation, education, and change projects, such as the Lovell family-sponsored Hackathon that helped fund the Tick Jedi program. To donate or to learn more about our many programs to reduce the impact of tick-borne illness, visit the website: https://invisible.international

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