Diabetic vascular diseases: molecular mechanisms and therapeutic strategies
Prolonged Symptoms After Lyme Disease: What CDC Wants Doctors To Know
A new toolkit can help physicians navigate the management of patients with prolonged symptoms after antibiotic treatment for Lyme disease, discussants said during a CDC webinar for clinicians last week.
"Chronic Lyme disease is really so much more than a medical issue. It's a social phenomenon that's driven by a combination of patient desperation for answers, physician frustration, and also medical misinformation," said Grace Marx, MD, MPH, of the division of vector-borne diseases at the CDC. "So, as the physician, bringing a solid, science-based understanding of Lyme disease to these clinical encounters is very important."
Erica Kaufman West, MD, director of infectious diseases for the American Medical Association (AMA), noted that Lyme disease is caused by an infection with Borrelia burgdorferi transmitted by the Ixodes blacklegged tick. Early diagnosis is critical to preventing disseminated disease, and treatment involves 10 days to 4 weeks of antibiotics, depending on the case.
However, clinical studies have found that prolonged courses of antibiotics do not offer a lasting benefit over placebo, Kaufman West added during the Clinician Outreach and Communication Activity (COCA) call.
Post-treatment Lyme disease syndrome (PTLDS) is a condition in which symptoms persist 6 months after the patient has received appropriate treatment with antibiotics. Studies have shown that 5% to 10% of patients experience symptoms of PTLDS, which include fatigue, joint and muscle pain, and difficulty concentrating, Kaufman West explained.
Controversy around the condition emerged when patients who never received a formal Lyme disease diagnosis, but had symptoms of PTLDS, began asking why they weren't also being diagnosed with Lyme disease.
This led to the development of a new term, "chronic Lyme disease," which is ascribed to patients who describe symptoms similar to Lyme disease but have no clinical or diagnostic evidence of current or past infection.
"There are hundreds of thousands of patients suffering from medically unexplained symptoms ... And those patients are understandably concerned and looking for a diagnosis," Kaufman West said, suggesting that some of these patients may have another post-acute infection syndrome or infection-associated chronic illness, such as post-polio syndrome or long COVID, among others.
Expert Insights
Given the lack of evidence-based guidance to support comprehensive treatment for these patients, the CDC and the AMA, in partnership with Mathematica, a research and data analytics consultancy company, conducted interviews and focus groups with 25 experienced physicians, and gleaned the following core insights:
"I can't overemphasize the importance of how critical it is to actively listen to the patient's story, and that includes really thoroughly exploring the patient's timeline of their symptoms, as well as their response to any prior treatments that they might have tried or been prescribed," Marx said, noting that a comprehensive physical assessment is also key.
"Most of these patients will ultimately be diagnosed with a condition other than Lyme disease. So, it's really important not to anchor prematurely to a particular diagnosis, [but] rather systematically consider a broad differential diagnosis that is specifically tailored to the patient's symptoms and also their exam findings," she added.
Patients who feel "dismissed" by mainstream clinicians may be more likely to seek out alternative providers who may recommend unproven and potentially dangerous treatments -- something Kaufman West and Marx described as "medical wandering."
Instead of turning patients away, Marx encouraged physicians to welcome patients into their practice -- recognizing that every visit is a chance to offer support and encouragement -- and to identify trusted sources of information for patients who are in search of help.
Toolkits and Resources
The AMA developed a continuing medical education (CME) module, which includes an overview of Lyme disease with a focus on prolonged Lyme disease. The module details how to conduct a broad differential diagnosis, how to put together a multidisciplinary team, and how to develop an individualized care plan.
A clinician toolkit, also found on the AMA's website, includes resources for physicians and patients including the CME module, interviews, videos, and supplemental handouts for patients, such as symptom diaries and goal trackers. The tool kit also includes clinician-focused handouts dealing with motivational interviewing and managing differences of opinion.
Symptom diaries allow patients to document their experiences in real time and in their own words, and goal trackers remind physicians not to make assumptions about what's most meaningful to patients, Kaufman West said. For one patient, getting through a workday without any naps might be meaningful, while completing an entire shopping list in one trip might be meaningful for another. Whatever the goal, it's important that it be specific and measurable, she added.
"The goal of the toolkit is to improve the lives of these patients, no matter the cause," Kaufman West stressed. "It's about saying, 'You've got pain. How can we get you ... [fewer] pain days? How can we have better quality-of-life days?' And not 'How can we get to a diagnosis?'"
Shannon Firth has been reporting on health policy as MedPage Today's Washington correspondent since 2014. She is also a member of the site's Enterprise & Investigative Reporting team. Follow
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Large-scale Study Will Seek To Unearth Causes Of Persistent Symptoms Of Lyme Disease
Tufts University researchers have received a $20.7 million grant from the National Institutes of Health (NIH) to try to answer some of the most vexing questions around chronic Lyme disease. The collaborative team will lead the largest NIH-funded prospective study to date, following patients from their earliest diagnosis of Lyme disease in order to better identify why some people go on to develop debilitating symptoms later on.
While Lyme disease often resolves with a two-to-three-week course of antibiotics, some patients see symptoms persist for months or years. Despite decades of research, many of the fundamentals of post-treatment Lyme disease syndrome or chronic Lyme disease remain elusive. There is no diagnostic test, clear definition, or specific treatment. There is no agreement on the mechanisms causing the condition or how frequently it occurs. It's even difficult to calculate the number of cases. This is because symptoms such as fatigue, muscle pain, and cognitive impairments are similar to those reported for other conditions, including the flu, fibromyalgia, chronic fatigue syndrome, and long COVID.
The researchers believe that identifying patients at their earliest diagnosis of Lyme disease and following them for over one year could shed light on why some return to good health and others develop prolonged symptoms. The study will aim to enroll 1,000 people with acute Lyme disease at suburban and rural community health centers and practices in Lyme-disease-endemic areas in New England over five years.
The research team is led by Linden Hu, an infectious disease specialist and the Paul and Elaine Chervinsky Professor in Immunology at Tufts University School of Medicine who is an internationally recognized leader in the field of Lyme research. For nearly half a century, researchers from Tufts University and its affiliated teaching hospitals have been involved in many of the field's seminal discoveries and are currently engaged in multiple avenues of ongoing investigation into the cause, prevention, and potential cure of Lyme and other tick-borne diseases.
"The underlying causes of chronic illnesses postinfection remain largely unknown because there isn't something you can point to on a test to find what's causing them. But people are tired, their muscles ache, and they can't think clearly, so we know something is happening, we just can't quantify it," said Hu, who is also co-director of the Tufts Lyme Disease Initiative. "When we start with patients we know have Lyme disease, we can cast a wide net to try to find what's causing these persistent symptoms."
The multicentered team from Tufts School of Medicine, Cummings School of Veterinary Medicine at Tufts University, Northwestern Feinberg School of Medicine, MaineHealth, Massachusetts General Hospital, and the Tufts Medicine health system comprises clinicians, epidemiologists, immunologists, microbiologists, and statisticians with a deep understanding of Lyme disease. The team's hypothesis is that chronic Lyme disease is the result of a confluence of events including the genetics of the patient, the infecting bacteria, and prior infections with other organisms that could result in epigenetic changes that alter immune responses. This complexity may contribute to why chronic Lyme disease has been so difficult to understand.
"This initiative provides a phenomenal opportunity to generate new insights into the diverse outcomes of Lyme disease that will provide improved means of diagnosis, prevention, and treatment," said Helen Boucher, dean of Tufts School of Medicine and chief academic officer at Tufts Medicine. "This study from bench to bedside to community is the collaboration that scientists, physicians, and patients need in order to gain an understanding of this complicated disease."
"It's part of the Tufts mission to help find solutions to national and global challenges," said Bernard Arulanandam, vice provost for research at Tufts. "This project can have a far-reaching impact, particularly as Lyme disease in the U.S. Expands beyond New England due to a convergence of factors. As the burden of Lyme disease has increased, and as we've seen the impact of postinfection syndromes, this project is timely and much needed."
As part of the work, the team will develop one of the largest and best characterized specimen banks that will be shared with the research community, providing an unparalleled resource for future studies.
Smaller studies of people with chronic Lyme disease have produced confounding results. Hu says that a large study approaching the condition from the complementary perspectives of the epidemiology, immunology, and microbiology of the disease is what is needed to move the field forward.
"Science and medicine's understanding of postinfection Lyme disease has been stuck at the same place for more than 30 years. Long COVID has brought attention to infection-associated chronic illnesses, but it has also made these conditions more difficult to study because so many people have had COVID," said Hu. "We hope that by having these leaders in the field working together to try to solve this in an integrative and multidisciplinary approach that we will finally be able to offer our patients some answers and eventually some cures."
This work is supported by the National Institutes of Health's National Institute of Allergy and Infectious Diseases under award number P01AI181934. The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health.
Disclaimer: AAAS and EurekAlert! Are not responsible for the accuracy of news releases posted to EurekAlert! By contributing institutions or for the use of any information through the EurekAlert system.
Lyme Disease: Maligned And Misunderstood
There is nothing good about Lyme disease, but it's time to sit and make sense of what Lyme disease is and what can be done about it.
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Lyme disease is spreading in Canada. The disease itself is caused by a bacteria, Borrelia burgdorferi (Bb) spread from ticks seeking a blood meal. It's not a serious cattle disease, but can cause symptoms in dogs, horses, possibly cats and humans. Stock dogs, horses and owners who spend long periods of time on range (moving cattle, fixing fences, etc.) are at the highest risk of contracting Lyme disease. Rodents and passerine birds serve as reservoirs for the agent of Lyme disease. Other animals, such as domestic ungulates, serve as hosts for the tick but fail to support the pathogen long term.
At least four known species of ticks transmit Lyme disease. However, the great majority of Lyme disease cases are due to the bite of a very tiny tick called the deer tick, or black-legged tick. The scientific name of the tick involved on the West Coast is Ixodes pacificus and Ixodes scapularis in the Northeast and Midwest. It is important to note ticks do not cause Lyme disease. They harbour and transmit the bacteria that cause it.
Ticks that carry Bb live throughout most of the United States. Lyme disease is most common in the upper Midwest and the northeastern and mid-Atlantic states. Black legged ticks are common in Europe and, in Canada, have established themselves in the Maritimes, Quebec, Ontario and Manitoba. Deer ticks are growing in prevalence across Western Canada. Last year, nearly 95 per cent of cases were reported in Ontario, Quebec and Nova Scotia.
Lyme disease researchers state their "findings are consistent with the hypothesis that increases in Lyme disease incidence in recent decades are attributable at least in part to the effects of climate change." Lyme disease is also being reported in parts of Canada previously thought to be too cold for the ticks, the study states (read the study at cmajopen.Ca/content/1/1/E43.Full).
Researchers at the University of Toronto have also studied the issue, using Lyme disease data from the Centers for Disease Control and Prevention. They considered factors beyond latitude that affect the rate of Lyme disease, and how it relates to population density in rural areas and the growth of human populations in suburbs.
Passerine birds or perching birds, the largest order of birds with about 5,700 species, are primary hosts of Bb. Domestic cattle and wild ungulates may show mild signs after infection, but for the most part clear infections after showing mild symptoms.
Clinical signs of Lyme borreliosis have been well documented in dogs, in which the characteristic presentation includes an intermittent, shifting lameness. Horses with Lyme borreliosis may exhibit neurologic signs and uveitis (inflammation of iris and mid-structures of eye), or cutaneous lymphoma (pre-cancerous skin lesions). Horses showing involvement of the nervous system may develop the inability to swallow, voice changes due to dysfunction of the larynx, facial paralysis and in co-ordination related to spinal paralysis. Behavioural changes are common.
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In humans, Lyme disease progresses through stages.
In the first stage, a Lyme disease rash appears three to 30 days after a tick bite. This stage of disease has a limited set of symptoms. The rash looks like a target or bull's-eye — clear in the centre surrounded by redness. The rash may be warm to the touch, but usually not painful or itchy. Other Stage 1 symptoms include:
Without treatment, Lyme disease can get worse. The symptoms often show up within three to 10 weeks after a tick bite. Stage 2 is often more serious and widespread. It is called early disseminated disease. Signs include:
Stage 3 symptoms usually begin two to 12 months after a tick bite and involve marked skin lesions and arthritis of large joints.
Chronic Lyme disease is a "highly controversial catch-all term for a host of long-lasting symptoms that may or may not stem from prior infection with the bacterium that causes acute Lyme disease. Often mis-diagnosed and mistreated, chronic Lyme disease leaves thousands of people physically and mentally debilitated, and without a medically established recourse." (When Lyme Disease Lasts and Lasts by Jane E. Brody, New York Times)
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The good news is that most animals that contract Lyme disease develop mild symptoms that often resolve without treatment. The bad news is that those animals that go on to develop the full-blown illness can suffer significantly. From a veterinary prevention aspect, two different vaccines are available for dogs.
In humans, Lyme disease is diagnosed by many naturopathic practitioners. Germany seems to be where most diagnoses are made. If — by the most recent statistics — Alberta had 16 confirmed positive human cases, 25 per cent of incidents of Lyme dis- ease live on my block in Cochrane. I know in three cases, diagnoses of Lyme disease followed submission of hair samples. People apparently recover after a hodgepodge of supplements and if no harm is done, good. If cured, great.
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