Post treatment 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 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

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

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