Lyme Diagnosis Archives

Neuropsychiatric Lyme symptoms: A new masterclass

Kris Newby on March 11, 2023

Invisible International has just released an important medical education course on neuropsychiatric symptoms associated with Lyme disease, with treatment recommendations for specific manifestations. The course is taught by Shannon Delaney, MD, MA, an assistant professor in the Department of Psychiatry and neuropsychiatrist at Columbia University Irving Medical Center.

A key section of the course reviews the latest evidence on Lyme disease persistence after standard treatments, useful in overturning the long-held belief that Lyme disease is always easy to treat and cure.

“It’s staggering,” said Dr. Delaney. “Months to years after the initial infection of Borrelia burgdorferi, patients with Lyme disease may have chronic encephalopathy, polyneuropathy, or less commonly, leukoencephalitis,” she said.

Other topics covered in this masterclass include:

The definition of Post-Treatment Lyme Disease Syndrome (PTLDS), as defined by the medical community.
Case studies that illustrate the unreliability of testing for neurological Lyme disease.
Immune system biomarkers associated with neurological Lyme disease.
A description of how the Lyme bacteria creates disease in humans.

Dr. Delaney also reviews a cohort study that analyzed the clinical data of 12,616 Lyme disease patients over 22 years. 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 results are a wakeup call for those who think of Lyme as a disease of mainly rashes and swollen joints; the study found 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.

This course reinforces the need for physicians to consider mental health symptoms when developing treatment plans for tick-borne disease patients.

The Invisible Education Initiative, funded by the Montecalvo Foundation, provides free, accredited Continuing Medical Education (CME) courses that focus on vector-borne and environmental illness within a One Health framework. These courses are available to clinicians and the public. To donate to this initiative and to learn about Invisible International, please go here http://invisible.international/give.

Watch here: https://learn.invisible.international/courses/neuropsychiatric-symptoms-with-lyme-disease-tick-borne-illness/

New CME course on “Diagnostic Challenges in Lyme disease”

Kris Newby on January 24, 2023

In Invisible’s latest medical education course, Monica Embers, PhD, associate professor of microbiology and immunology at the Tulane National Primate Research Center and a leading expert in Borrelia burgdorferi (Lyme) infections in non-human primates, discusses problems with the current two-tiered Lyme testing protocol and describes a promising new diagnostic approach that her lab is working on.

Most Lyme experts agree that the 30-year-old antibody testing approach that we use needs a serious overhaul. The tests don’t work well in the first few weeks after a tick bite because the immune system hasn’t yet produced measurable antibodies. And people who have the worst infections or compromised immune systems may have antibody levels too low to measure. These “false negatives” can lead to truly sick people being denied treatment and going on to become chronically ill.

After a brief overview on the clinical stages of Lyme disease and the two-tiered testing protocol, Dr. Embers goes deep on how immune system responses change during an infection and after treatment. Her strong recommendation: Start over with Lyme testing criteria using next-generation molecular detection equipment to define antibody profiles for all stages of Lyme disease, guided by a more statistically valid study design—because every positive Lyme case missed could result in a life lost to chronic disease.

Another must-see course from Dr. Embers is “Antibiotic efficacy for treatment of Lyme disease,” which presents emerging evidence from animal studies suggesting 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. And in her third course, “Chronic Infection and the Etiology of Dementia,” she lays out the evidence that the Lyme bacteria could be one possible cause of dementia.

Watch here: https://learn.invisible.international/courses/diagnostic-challenges-in-lyme-disease/

The tick-borne disease epidemic in Ireland: A call for more research

Kris Newby on January 10, 2023

In our newly released medical education course, a Dublin-based infectious disease physician-researcher raises the alarm about the undercounting and under-treatment of tick-borne diseases in Ireland, as well as the risk that this poses to the country’s blood supply.

This course, “Call for international collaboration and data sharing from the clinical trenches,” is taught by 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. He is also the founder of the Lyme Resource Centre in Scotland and a member of Invisible’s Scientific Advisory Board.

In the course, Dr. Lambert cites studies that have found that:

The standard two-tiered antibody tests miss more than 50% of verifiable Lyme patients.
One-in-five serum samples from the Irish blood bank showed the presence of antibodies to the Lyme disease bacterium, Borrelia burgdorferi. [Source: Irish Surveillance Center data from high prevalence areas]
The overall rate of borrelial infection in ticks collected at six sites in Ireland was 5%, with a range from 2% to 12%, depending on the locations of tick collection. The most prevalent species detected were garinii (70%) followed by B. valaisiana (20%) and B. miyamotoi (10%). All of these Borrelia species cause human disease, and this is the first time that B. miyamotoihas been detected in Ireland.

“Most people don’t remember a tick, many don’t get the bullseye rash, and many are not offered a Lyme test. For those truly infected, the Lyme antibody test is insensitive. Until we have enhanced surveillance of clinical cases and improved sensitivity of the diagnostic testing, numbers of cases of Lyme disease and coinfections will be underreported,” said Dr. Lambert.

Dr. Lambert also highlights a major flaw in the Lyme disease tracking in Ireland: Reporting is only required for the most serious neurological manifestations of the disease, i.e., patients who have been admitted to a hospital and have had a lumbar puncture that shows specific abnormalities in the cerebral spinal fluid.

Other topics covered include the undercounting of Lyme cases in Canada and the United Kingdom, the geographic spread of Lyme in Europe, and the need to treat patients according to symptoms, not one-size-fits-all guidelines. He goes on to cite evidence that treating with longer courses of combinations of antibiotic yields better patient results.

This free, accredited Continuing Medical Education (CME) is brought to you by the Invisible Education Initiative, funded by the Montecalvo Foundation.

Watch here: https://learn.invisible.international/courses/call-for-international-data-sharing-from-the-clinical-trenches-in-ireland/

Diagnosing young children with Lyme disease, advice from a pediatrician

Kris Newby on July 26, 2022

Lyme disease affects children more than any other age group, but the young ones are often difficult to diagnose, especially before they’ve developed the vocabulary to describe how they’re feeling. To help parents recognize symptoms and prevent serious illness, I chatted with Charlotte Mao, MD, a pediatric infectious disease physician who trained at Harvard Medical School and Boston Children’s Hospital, and practiced at The Dean Center for Tickborne Illness, Spaulding Hospital, where she treated children with complex Lyme disease. She currently serves as the Curriculum Director for Invisible International’s Medical Education Initiative. Here are some frequently asked questions that she encounters in her practice.

Q: What do I do if I find a tick on my child?

If you see a tick embedded in your child, position a fine-tipped tweezer where the tick’s head meets the skin, then swiftly pull it straight out. Do not grasp, squeeze, or twist the tick’s body. Then place it in a plastic baggie with a small piece of damp paper towel. Wash the extraction area and your hands thoroughly with soap and water.

Consider sending the the tick to a testing lab, to identify the species and what microbes are inside of it. Because the current Lyme disease screening tests are unreliable in the first few weeks after a bite (it takes this long for humans to develop antibodies that can be measured), the results might provide your physician with useful information, especially if your child later comes down with symptoms. You can also go online to identify which tick species transmit various disease agents. Lyme disease is carried by blacklegged ticks, Ixodes scapularis in the Eastern United States and Ixodes pacificus in the West.

Some experts say that it takes at least 36 hours for an attached tick to transmit Lyme bacteria to a host, because this is the minimum time it takes for these bacteria to travel from a tick’s midgut to its saliva glands. However, transmission can happen in some cases with a shorter duration of attachment, specifically when bitten by a partially fed tick that already has Lyme bacteria in its saliva from a previous attachment. This occurs in about 5 to 10 percent of infected ticks, according to the Lyme bacteria discoverer, Willy Burgdorfer. Other tick-borne microbes, such as the potentially deadly Powassan virus, can be transmitted in as little as 15 minutes after tick attachment.

Time is of the essence in preventing serious tick-borne disease. So, in Lyme endemic areas, I personally advise parents to begin preventative antibiotic treatment before tick testing results come back, within 48 to 72 hours of attachment. Over the following month, closely observe a child for symptoms, such as an expanding skin lesion at the bite site, fever, malaise, headache, mild neck stiffness, aches/pains in muscles, or joints aches. If these develop, visit your pediatrician.

Q: How can I tell if my child has Lyme disease?

Early signs of Lyme disease include flu-like symptoms, such as fever (often mild), chills, head and neck pain, body aches (muscle and joint), malaise, and fatigue. (Unfortunately, these symptoms can be mistaken for irritability or viral infections, such as the flu or COVID. Check your child for a Lyme disease rash and don’t forget to check the scalp and skin-fold areas (groin, armpits, behind the knees, and ears). Not everyone gets the classic “bulls-eye” rash; an expanding rash without central clearing is more common. You can find some sample rash images on the Internet.

Other classic Lyme manifestations that can develop include a weakness or paralysis of facial muscles (Bell’s palsy); intense headaches, numbness, tingling, or weakness in extremities (neuropathy); eye and heart issues (especially cardiac rhythm abnormalities); and joint swelling or pain. Gastrointestinal symptoms, generally underappreciated as potential Lyme manifestations, may include nausea, abdominal pain, vomiting, loss of appetite, gastroparesis (stomach paralysis), and/or constipation.

Q: What are some of the late-stage Lyme symptoms?

Physical complications can involve the joints, nervous system, and eyes. Lyme arthritis most commonly involves one or a few large joints, especially the knee, but can also affect the jaw (temporomandibular joint or TMJ), and, occasionally, small joints of the fingers and toes. Fatigue and aches/pains are common in late and early disease. Lyme disease can also cause behavioral or mood changes in children. Some children develop neuropsychiatric manifestations such as anxiety, depression, panic attacks, or obsessive-compulsive disorders. All these symptoms can come and go, and this can be confusing to a patient, their family, and teachers. But trust that you know your child best, and if you suspect Lyme, visit your pediatrician.

Q: What are the best Lyme disease tests?

A Lyme disease diagnosis ultimately needs to be made based on a multifaceted clinical evaluation with lab work viewed as supportive (or not), but not definitive. My diagnosis is based on a comprehensive medical history, a physical exam, and diagnostic testing for other potential explanations besides Lyme disease.

In testing, I prefer to use Lyme specialty labs that provide more diagnostic information than standard commercial labs. I particularly like Medical Diagnostics Laboratory (MDLab.com) for Lyme immunoblot testing. Immunoblots detect the presence of antibodies to specific proteins of a microorganism that develop after a person has been exposed to a target infectious organism. Once detected, these antibodies can be seen as dark bands on a blotting membrane or an imaging system. MDLab’s immunoblot reports include detection results for more than the 10 CDC-specified Lyme bands, and a photo of the patient’s actual blot with an objective optical density score grading the intensity of each detected band. In some cases, fainter bands that do not meet the lab’s positivity threshold still might provide useful clinical information, increasing the suspicion of a past or present Lyme infection.

Q: What’s your treatment approach for young children?

As an infectious disease specialist, I typically see children who’ve already been treated by their pediatrician but have continuing symptoms after standard treatment courses. These more complex cases often require individualized management approaches.

If a child has not yet received an initial antibiotic course for Lyme disease, I start with recommended oral antibiotics—doxycycline, amoxicillin, or cefuroxime. (While doxycycline has traditionally not been prescribed for children under 8 years of age due to concerns of dental staining, studies have shown the risk of dental staining is much less with doxycycline than older tetracyclines. The American Academy of Pediatrics now says doxycycline can safely be used in children under 8 years for short durations, up to 21 days. Notably, doxycycline has long been the treatment of choice, regardless of age, for tick-borne rickettsial diseases such as Anaplasma, Ehrlichia, and Rocky Mountain Spotted Fever.

For acute central nervous system issues such as Lyme meningitis, I prescribe recommended intravenous antibiotics (typically ceftriaxone), which more effectively reaches therapeutic drug levels in the brain and central nervous system. I also use intravenous ceftriaxone for Lyme arthritis when symptoms haven’t resolved after two courses of oral antibiotics.

To avoid gut issues, I prescribe probiotics and monitor for adverse effects such as diarrhea.

Q: What if symptoms continue after treatment?

In the U.S., ticks are known to carry 18 or more disease-causing microbes, and sometimes concurrent infections can cause lingering symptoms, even after recommended Lyme disease treatment. A considerable degree of overlap exists among the nonspecific manifestations of Lyme disease and other tick-borne infections, but there are certain symptoms that are more prevalent for specific co-infections. I routinely test for Bartonella, Babesia, Anaplasma/Ehrlichia, and Borrelia miyamotoi if the child has not already had this testing done.

Bartonellosis, an under-recognized bacterial infection that can be transmitted by fleas, lice, or cat scratches/bites, can cause a multitude of symptoms, some of them overlapping with those of Lyme disease. These might include fever; swollen lymph nodes; an enlarged liver or spleen; skin “tracks” that may resemble striae or stretch marks; “evanescent” rashes that come and go; and neuropsychiatric symptoms, especially anxiety, panic attacks, anger/aggression/rage episodes, and obsessive-compulsive disorders. Other potential symptoms include tremors; jerky movements; sudden muscle weakness (e.g., “legs giving way”); a sensation of internal vibration; seizures; musculoskeletal pain, including in soles of the feet or shins (the latter is a reported feature of trench fever, caused by Bartonella quintana); abdominal pain; and eye issues (including uveitis and retinitis, both also seen with Lyme). Lab findings occasionally seen with Bartonella, all typically mild, include decreases in white blood cell count; increased eosinophils or monocytes; hemolytic anemia (rarely); increased C-reactive protein levels; and liver enzyme elevations.

Common babesiosis symptoms, caused by a parasite that infects red blood cells, include night or day sweats, fevers (can be high), chills, fatigue, malaise, hemolytic anemia and low platelets. Less common symptoms include headache, dry cough, shortness of breath (sometimes described as “air hunger”), nausea, abdominal pain, vomiting, and diarrhea.

The combination of low white blood cell and platelet counts make me suspect Anaplasma or Ehrlichia.

I always ask about factors that increase risk for repeat exposure/infection, such as outdoor hobbies (hiking, camping, gardening) and exposures to animals and blood-sucking bugs such as ticks, fleas, and lice. For the child with persistent symptoms after recommended treatment regimen(s), I also explore the possibility of nutritional/vitamin deficiencies or environmental toxic exposures, such as water-damaged buildings with mold contamination. Mold toxins or mycotoxins, produced by certain mold species, can complicate Lyme disease or co-infections by causing overlapping symptoms or negatively impacting treatment response.

The decision to administer additional antimicrobial therapy in patients with persistent or recurrent symptoms following standard treatment for Lyme disease is a controversial issue. According to treatment guidelines of most major medical societies, there is no good evidence that these persistent “post-treatment” symptoms are driven by an active infection that might benefit from additional antimicrobial therapy. The topic is too complex to cover here, but I’ll say simply that I do not agree with this blanket statement. The question of how best to treat this subgroup of patients is an area that requires more research and funding.

Q: I’m pregnant. Can I pass Lyme disease to my unborn child?

Borrelia infections can be transmitted from a pregnant mother to her infant. How frequently this occurs and the range of potential health risks for the infant/child have not been well-established. Studies to-date indicate significantly fewer adverse outcomes in treated compared to untreated pregnant women. This is another area that has been under-studied and requires more research attention and funding.

Q: I’m sending my kids to summer camp. Any advice on keeping them safe?

I recommend pre-spraying clothing with permethrin to keep ticks away. This typically remains effective for six to eight washings. Have them pack insect repellents and don’t forget to teach them how to do tick checks.

Q: What resource can I give my child’s pediatrician to learn more about tick-borne illness?

Invisible International has created the first-ever continuing medical education platform that focuses on tick-borne illness. It is accredited by the American Academy of Family Physicians. Courses on this platform are available at no cost to physicians and other providers. Learn more and share this with your child’s pediatrician. Invisible’s Medical Education Initiative is supported by the Montecalvo Foundation.

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What you need to know about the new Lyme ICD-11 diagnostic codes

Kris Newby on March 8, 2022

The World Health Organization (WHO) has added 15 new medical diagnostic codes for Lyme disease, which replaced four older codes and officially went into effect on January 1, 2022. Over time, these codes will provide patients with more avenues for medical insurance reimbursement and enable researchers to better track and analyze Lyme disease complications, treatments, and outcomes.

The International Classification of Diseases, 11th Edition (ICD-11), replaces the ICD-10 as the foundation for identifying health trends and statistics worldwide. It is also the international standard for reporting mortality, morbidity, and other conditions affecting health.

While the WHO recognized Lyme borreliosis to be a “disease of consequence” in the 1990s, there were only four Lyme ICD codes until now (acute Lyme, and Lyme arthritis, meningitis, and polyneuropathy). These codes didn’t recognize chronic Lyme or many of the serious, potentially fatal complications of the disease that have come to light over the last three decades. This resulted in medical insurance denials for seriously ill Lyme patients and the loss of health data that could be used in evaluating diagnoses and treatments.

What does this mean for Lyme disease patients today? Well, it may take some time for the new codes to be adopted by medical insurers, but the incorporation of them into electronic health records systems will enable researchers to better analyze Lyme patient symptoms, treatments, and outcomes.

In the interim, Lyme patients can learn more about these codes (see the list below) and listen to an interview with Jenna Luche-Thayer, MIA, Founder and Director of the Ad Hoc Committee for Health Equity in ICD-11 Borreliosis Codes, to understand how they will improve Lyme patients care and medical reimbursements. The podcast is hosted by Kristina Bauer, Director of Texas Lyme Alliance and an advocate for congenital and pediatric Lyme treatment.

Watch here:

New ICD-11 Lyme Codes

Lyme borreliosis (1C1G)

Early cutaneous Lyme borreliosis, Stage 1 Lyme disease (1C1G.0)
Disseminated Lyme borreliosis (1C1G.1)
Lyme neuroborreliosis, Myelitis associated with Lyme disease (1C1G.10)
Lyme carditis (1C1G.11)
Ophthalmic Lyme borreliosis (1C1G.12)
Lyme arthritis (1C1G.13)
Late cutaneous Lyme borreliosis (1C1G.14)
Other specified disseminated Lyme borreliosis (1C1G.1Y)
Disseminated Lyme borreliosis, Stage 2 (1C1G.1Z)

Other
Dementia due to other specified diseases classified elsewhere: Dementia due to Lyme Disease (6D85.Y)
Infectious panuveitis: Infectious panuveitis in Lyme disease (9C20.1)
Infectious intermediate Chorioditis: Infectious intermediate uveitis in Lyme disease (9B66.1)
Other specified white matter disorders due to infections: Central Nervous System demyelination due to Lyme borreliosis (8A45.0Y)
In addition, congenital Lyme can be coded with “KA6Y Other specified infections of the fetus or newborn” and “XN13C Borrelia Burgdorferi.”

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

Lyme testing: The good, the bad, and the ugly

Kris Newby on October 21, 2021

In the free medical education course, “Serologic testing in Lyme disease,” Elizabeth L. Maloney, MD, a Minnesota family physician and tick-borne disease educator, reviews published studies that evaluate current Lyme disease tests and discusses how these tests should be used in diagnosing patients.

I think many experts would agree with me on this point: The United States’ Lyme disease testing strategy is confusing, time consuming, subject to human error, and urgently in need of a technology upgrade. The quickest way to get up to speed on the good, the bad, and the ugly of Lyme testing is to watch Dr. Elizabeth Maloney’s accredited medical education course on the topic. With clarity and precision, Dr. Maloney explains the specificity, sensitivity, and accuracy of the most widely used Lyme tests, discussing how these tests should be used in a clinical setting and illuminating areas for improvement for the next generation of diagnostic approaches.

The underlying message of the lecture is that we can do better, and this is the reason Invisible International is launching a “Tick-borne Illness Diagnostics Development Incubator,” a yearlong collaborative forum designed to bring together teams of multidisciplinary innovators to look at diagnostic protocols, processes, and tests anew, with an eye to accelerating better diagnostic solutions. In this forum, we’ll bring together researchers, diagnostics companies, patient representatives, government representatives, and industry funders to brainstorm on ways to remove roadblocks to innovation. We’ll also feature lectures covering areas such as concept seed funding, getting through the regulatory pipeline, and fundamentals of low-cost diagnostics design.

This incubator is designed to complement the LymeX Tick-Borne Disease Innovation Accelerator, which will be offering prizes for the development for better early Lyme diagnostics. [Lyme X is funded with $25 million from the Steven & Alexandra Cohen Foundation and co-managed with the U.S. Department of Health and Human Services (HHS).] The Invisible Incubator is way to gain a competitive edge in this competition, by making it easy to engage with clinical, lab, and collaborators, and by participating in forums where past and emerging technologies will be discussed.

If you’d like to join the effort to improve Lyme diagnostics, please watch this educational primer on Lyme testing, then join us Saturday, October 30, 1:00 to 2:30 p.m. EST.* Registering at https://www.hack.invisible.international/ (*This presentation will be recorded and posted on Invisible’s website after the event.)

This continuing medical education 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 at https://invisible.international/mission

Photo credit: Pollyana Ventura, iStock

The state of tick-borne illness diagnostics: Learn, engage, and accelerate

Kris Newby on October 12, 2021

Invisible International is launching a yearlong “Tick-borne Illness Diagnostics Development Incubator,” starting with an online briefing, “The State of Tick-Borne Illness Diagnostics: Learn, Engage, Accelerate.”When: Saturday, October 30, 1:00 to 2:30 p.m. EST.
Registration: https://www.hack.invisible.international/

The weak link in reducing the public health burden of Lyme disease and other tick-borne illnesses is the lack of fast, cheap, and reliable diagnostic approaches. Early Lyme diagnoses are often delayed because the Lyme 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. There’s also no simple diagnostic roadmap to follow when multiple tick-borne pathogens may be involved.

This briefing will mark the start of Invisible International’s “Tick-borne Illness Diagnostics Development Incubator,” a yearlong collaborative forum designed to bring together teams of multidisciplinary innovators to look at diagnostic protocols, processes, and tests anew, with an eye to accelerating better solutions. We’ll bring together researchers, diagnostics companies, patient representatives, government representatives, and industry funders to brainstorm on ways to remove roadblocks to innovation. We’ll also feature lectures covering areas such as concept seed funding, getting through the regulatory pipeline, and fundamentals of low-cost diagnostics design.

This incubator is designed to complement the LymeX Diagnostics Moonshot, which will be offering prizes for the development for better early Lyme diagnostics over three phases. [Lyme X is funded with $25 million from the Steven & Alexandra Cohen Foundation and co-managed with the U.S. Department of Health and Human Services (HHS). Competition details will be posted later this year at Challenge.gov. ] The Invisible Incubator is way to gain a competitive edge in this competition, by making it easy to engage with clinical, lab, and collaborators, and by participating in forums where past and emerging technologies will be discussed.

The “The State of Tick-Borne Illness Diagnostics” briefing will feature:

Introductions:

Mark Lovell, PhD, former Chairman and Chief Scientific Officer at ImPACT Applications, Inc.; Chair of Invisible’s Lovell Innovation Platform and Advisory Board

Valerie Montecalvo, President, Bayshore Recycling; Chair of Invisible’s Montecalvo Platform for Tick-Borne Illness Education and Strategic Initiatives

Keynote: The human cost of poor diagnostics
Nicole Bell, executive, entrepreneur, and author of What Lurks in the Woods: Struggle and Hope in the Midst of Chronic Illness, A Memoir

·Demystifying commercialization

Rhonda Shrader, Invisible International Innovation Chair; Executive Director, Berkeley Haas Entrepreneurship, UC Berkeley; and NSF I-Corps, Bay Area Node Director

Amanda Elam, CEO/Cofounder of Galaxy Diagnostics, Inc. and Entrepreneurship Research Fellow at Babson College

Why patient input is important

Emily Lovell, Invisible International Advisory Board and computer science researcher/educator

Perspectives from the diagnostic trenches

Representatives from three specialty labs will share their take on today’s diagnostic technologies today and what’s needed in the future

Invisible International

Nev Zubcevik, DO, CMO, Call for better diagnostic tools from the clinical trenches

Laura Lott, CEO, Learn, engage, accelerate: Why your team should join the challenge

The “Tick-borne Disease Diagnostics Innovation Incubator” is a component of Invisible’s Lovell Innovation Platform, funded by a trailblazing donation by Mark and Eileen Lovell. Thanks to their generous support, Invisible International is delivering programs that will change the landscape of tick-borne illness and other invisible illnesses through community action, education, and research.

When: Saturday, October 30, 1:00 to 2:30 p.m. EST.*
Registration: https://www.hack.invisible.international/

*This presentation will be recorded and posted on Invisible’s website after the event

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.]

[2]

Strle, F., Cimperman, J., Maraspin, V. et al. Azithromycin versus doxycycline for treatment of erythema migrans: Clinical and microbiological findings. Infection 21, 83–88 (1993). https://doi.org/10.1007/BF01710737. [“Minor” symptoms in 15/52 (29%) who received doxycycline and 10/55 (18%) who received azithromycin.]

Dattwyler, R.J.; Luft, B.J.; Kunkel, M.J.; Finkel, M.F.; Wormser, G.P.; Rush, T.J.; Grunwaldt, E.; Agger, W.A.; Franklin, M.; Oswald, D.; et al. Ceftriaxone compared with doxycycline for the treatment of acute disseminated Lyme disease. N. Engl. J. Med. 1997, 337, 289–294. [Persistent symptoms at last follow-up visit in 18/68 (26%) Ceftriaxone vs 10/72 (13.9%) doxycycline.]

Aucott JN, Rebman AW, Crowder LA, Kortte KB. Post-treatment Lyme disease syndrome symptomatology and the impact on life functioning: is there something here?. Qual Life Res. 2013;22(1):75-84. doi:10.1007/s11136-012-0126-6. [Prospective cohort study of 63 patients with EM rash and systemic symptoms treated with doxycycline reported a 36% rate of PTLDS.]

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