What Is The Impact Of This Work
Symptom persistence of 14% falls within the 10-20% range of estimated persistent symptom prevalence previously described in the Lyme disease literature. This result likely underestimates the true rate of persistent symptoms since this study of early diagnosed and treated patients does not account for the substantial number of misdiagnosed and delayed diagnosed cases experienced in a non-study setting where prolonged illness risk would be expected to be greater. In complicated patients such as those with a delayed diagnosis or other later manifestations of Lyme disease, persistent illness risk may be closer to 20% to 30%.
With 476,000 new cases annually in the US, the âlong haulâ impact of Lyme disease is clearly a substantial public health concern.
The main symptoms of post treatment Lyme disease are fatigue, generalized pain and cognitive dysfunction. These core symptoms are similar to those seen in other infection associated persistent illnesses such as long COVID and ME/CFS. More research is needed to determine if there are common mechanisms of inflammation, immune response dysregulation, autonomic nervous system dysfunction, or pathogen or antigen persistence that underlie these infection associated chronic illnesses.
Clinical Course Of Early And Late Manifestations Of Lyme Borreliosis And Post
Following antibiotic treatment, resolution of the symptoms and signs of Lyme borreliosis and residual symptoms vary depending on the initial clinical manifestations.
In prospective treatment trials of Lyme borreliosis, in which patients were continuously observed after treatment of proven infection, it appears plausible to link persisting symptoms, which were not present before infection, with B. burgdorferi infection. In contrast, prevalence studies of fatigue-like symptoms and musculoskeletal pain in Lyme borreliosis are more difficult to interpret, because approximately 1 year after treatment of Lyme borreliosis the prevalence of reported symptoms is often comparable to that of an uninfected population .
Erythema migrans is the most common manifestation of B. burgdorferi infection. If treated with antibiotics, skin lesions and, if present, systemic symptoms, usually resolve within 14 days . However, some nonspecific symptoms may persist for weeks or even months after adequate treatment in the absence of any evidence of persisting infection . These symptoms may include fatigue, malaise, arthralgia, headache, myalgia, paraesthesia, dizziness, nausea, insomnia, sleepiness, forgetfulness, concentration difficulties, irritability, and pain . After erythema migrans, 5.6 to 11% of patients experience persisting symptoms 6 months after treatment, depending on the patient populations assessed .
Background On Lyme Disease:
In North America, Lyme disease is caused by Borrelia burgdorferi, a bacteria carried by black-legged ticks.
Symptoms of Lyme include:
- skin rash erythema migrans
The CDCs data on Lyme disease dates back to 1991, but reports of Lyme disease go back to the mid-1970s. The number of cases has grown steadily since the early 90s, and the areas where the disease is found has spread across the country.
In Europe, Lyme is also present and sometimes called Borreliosis. Cases can involve genospecies of Borrelia including B. afzelii, B. garinii and B. valaisiana.
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Post Treatment Lyme Disease Symptoms
After treatment is complete and the patient is released from combatting Lyme disease infections, some symptoms may persist in an intermittent manner. Some PTLDS symptoms may be mild while some may be more severe. Generally, the severe PTLDS symptoms work themselves out quickly within 2-3 months. True post treatment Lyme disease syndrome symptoms come and go and become less and less, over time with a normal lifestyle. A normal lifestyle constitutes a normal healthy diet without dietary modifications, except for gluten most times. Symptoms associated with PTLDS continuously lessen with the ability to consistently increase exercise and with the ability to handle physical, mental, and emotional stressors without worsening of symptoms.
Depending on the damage done by the Lyme disease infections, will depend on the symptoms associated with PTLDS. With true PTLDS, intermittent symptoms continue to slowly decrease in frequency and severity and over time, instead of increase. If symptoms continue to increase with a normal lifestyle and one continues to get sick and stay sick, then it could be likely the persons Lyme disease treatment did not quite take them to true remission.
What Aggravates PTLDS
The Common Belief Lyme Disease Can Only be Managed
A Common Mistake
Lyme disease doctors who have helped put themselves and others in remission are the ones who have the best chance of helping people.
Why Do Lyme Symptoms Linger
As you know, Lyme disease is caused by the bacterium Borrelia burgdorferi. The conventional approach to eradicating Lyme disease is to eliminate the bacteria, which is why a long series of antibiotics is the standard treatment. But B. burgdorferi is a tricky bugger and one that can continue to wreak havoc long after it has physically been eradicated from your system.
The persistent neurocognitive symptoms that can manifest from PTLDS can include chronic fatigue, musculoskeletal pain, mood or behavioral changes, disrupted sleep patterns, memory loss, dizziness, and headaches. A common consistency among those suffering from PTLDS is that symptoms tend to wax and wane. This, of course, makes PTLDS very frustrating, and as a result, can greatly impact the quality of your life and your ability to shine in all aspects of your life .
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Possible Pathogenesis Of Ptlds
Pathogenic mechanisms that would lead to post-Lyme disease symptoms have not been identified so far. Possible mechanisms other than active infection , especially immune system abnormalities or infection-induced autoimmunity, have been suggested. Recently, Strle et al. reported that in European patients with erythema migrans, mostly due to B. afzelii, high type 1 T-cell-associated CXCL9 and CXCL10 chemokine responses correlated with more effective immune-mediated spirochaetal killing, whereas high type 17 helper-T-cell-associated cytokines and interleukin 23-associated immune responses correlated with post-Lyme symptoms. Persisting symptoms in this cohort included arthralgias, headache and fatigue, which were not incapacitating and usually resolved within months after antibiotic therapy. However, concerns about the statistical interpretation of such immunological findings due to low statistical power have been raised . Controversial results were reported on the association between humoral immune response to endothelial cell growth factor and PTLDS . Other potential aetiologies of PTLDS include antineural antibodies, bacterial debris and tissue destruction . Chronic pain syndromes, fatigue or neurocognitive deficits were also considered to be a consequence of a central sensitisation syndrome that may be induced by infectious or noninfectious stimuli .
Joint Pain Or Arthritis
If you start experiencing joint pain or symptoms of arthritis after you’ve completed treatment for Lyme disease, it could be PTLDS. While it’s rare for people in their 20s and 30s to develop suddenly arthritis, WebMD reported that at least half of people with Lyme disease get some form of arthritis. “Often the pain and joint stiffness can be felt all over, but sometimes itâs just in certain joints, like the knees. It usually goes away, but in some people, the arthritis may continue.”
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Chronic Lyme Disease Vs Acute And Late Stage Lyme
One reason chronic Lyme disease is harder to detect and treat than Lyme at earlier stages is that chronic Lyme disease symptoms are more wide-ranging and varied. Chronic Lyme disease can cause symptoms of early Lyme disease such as fatigue and muscle aches to recur, but it can also cause new symptoms that affect different parts of the body.
Late Stage Lyme Disease: Symptoms And Treatment
There are three stages of Lyme disease. If you are experiencing the symptoms in the late stage, that means you have already passed through the first two stages of early localized and early disseminated Lyme disease.
During the early localized phase, you may have had a rash associated with the bite given by the infected tick. Symptoms following the bite may have included chills, fever, headaches, fatigue, stiff neck, muscle soreness, and possibly swollen lymph nodes.
If you did not receive the right treatment at the onset, you quickly moved into the next stage. During the early disseminated phase, the Lyme infection started spreading through your body.
Symptoms in the second stage include all of the signs from the early localized stage, only worse. You may also experience vision problems, pain or weakness in your limbs, heart palpitations, and facial paralysis such as bells palsy.
If left untreated, stage two will turn into late stage Lyme disease.
If you are in stage three, or the late disseminated stage, you have been struggling with symptoms for a long while and without treatment specific to Lyme disease.
The symptoms of late stage Lyme disease are genuine and can interfere with daily functioning.
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Can Lyme Borreliosis Become Chronic
Whether PTLDS is a specific disease remains controversial because of the lack of objective evidence of an ongoing immunological or infectious process in patients with correctly treated Lyme disease. Furthermore, identical symptoms appear to be equally prevalent in individuals without a history of Lyme borreliosis . Also, original data on PTLDS are scarce and heterogeneous, and no standardised, validated and widely accepted case definition is available. Moreover, the debate on PTLDS is confused by the discussion on whether Borrelia infection can persist and become chronic after adequate treatment .
Indeed, there is no scientific evidence of chronic Lyme borreliosis be it due to either microbiological failure of appropriate antibiotic treatment, antibiotic resistance , or pathogen persistence after correct treatment . B. burgdorferi culture results from erythema migrans skin lesion biopsies following adequate antibiotic treatment have been negative in almost all patients, including those with persisting symptoms after treatment . Furthermore, there are also no records of a reactivation of hypothetically latently persisting B. burgdorferi among immunocompromised hosts, as can be observed in latent infections due to intracellularly persisting pathogens.
Current Challenges And Future Priorities
Patients with PTLD represent a substantial burden to the United States health care system. In a large, health insurance claims analysis of 47 million members, estimated total direct medical costs from Lyme disease were between $712 million and $1.3 billion per year, with a significant portion of these specifically due to PTLD-related costs . The same study found that the adjusted odds of any PTLD-related symptom diagnosis following Lyme disease was 4.77 higher than age-, sex-, enrollment year-, region- and payer type-matched controls without Lyme disease, and that those patients with Lyme disease who went on to have at least one PTLD symptom had over twice the average total health care costs as those who did not . These cost estimates do not reflect additional indirect, non-medical, and lost productivity costs to patients, which may be substantial in a population with a chronic and significant illness impact on quality of life . Novel preventative approaches to reduce incidence of new Lyme disease cases, as well as physician and community educational interventions to increase awareness and reduce diagnostic delays and misdiagnosis, are needed to reduce costs and improve patient outcomes.
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How To Prevent Post
While you may not be able to prevent post-treatment Lyme disease syndrome, you can take precautions to prevent coming into direct contact with infected ticks. The following practices can reduce your likelihood of getting Lyme disease and developing persistent symptoms.
If a tick bites you, contact your doctor. You should be observed for 30 days for signs of Lyme disease. You should also learn the signs of early Lyme disease and seek prompt treatment if you think youre infected. Early antibiotic intervention may reduce your risk of developing chronic symptoms.
The signs of early Lyme disease can occur from 3 to 30 days after a bite from an infected tick. Look for:
- a red, expanding bulls-eye rash at the site of the tick bite
The Experience Of Lyme Disease
In our book, Conquering Lyme Disease: Science Bridges the Great Divide, we review several of the key features of Lyme disease that can make the experience of this illness so challenging, including:
- The politically charged climate
- The protean nature of manifestations of the illness
- The waxing and waning course of symptoms
- The psychological ramifications of having an “invisible” chronic illness and the experience of invalidation
- The challenge of having a disease that affects the brain and sensory system
- The impact of uncertainty surrounding diagnosis, treatment, and prognosis
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Posttreatment Lyme Disease Syndromes: Distinct Pathogenesis Caused By Maladaptive Host Responses
Center for Immunology and Inflammatory Diseases, Massachusetts General Hospital, Harvard Medical School, Boston, Massachusetts, USA.
Address correspondence to: Allen C. Steere, Massachusetts General Hospital, CNY 149/8301, 55 Fruit Street, Boston, Massachusetts 02114, USA. Phone: 617.726.1527 Email: .
J Clin Invest.
Lyme disease, which is epidemic in certain communities, primarily in the northeastern United States, is caused by the tick-borne spirochete Borrelia burgdorferi . When untreated, the disease usually occurs in stages with different manifestations at each stage . In the northeastern United States, the infection usually begins with a slowly expanding skin lesion, erythema migrans , often accompanied by nonspecific symptoms, including headache, myalgias, arthralgias, fever, malaise, and fatigue. Within weeks , neurologic or cardiac abnormalities may develop. Months later , usually following a latent period, intermittent or persistent monoarticular or oligoarticular arthritis commonly develops, lasting for several years, accompanied by minimal, if any, systemic symptoms. Rarely, patients have late neurologic involvement, characterized by a subtle encephalopathy or sensory polyneuropathy. Thus, in most patients, the natural history of Lyme disease, without treatment, is one of persistent infection for several years, with latent periods and changing system involvement.
This Research Was Supported By:
the Steven and Alexandra Cohen Foundation the Global Lyme Alliance and the Bay Area Lyme Foundation . This publication was also made possible by the Johns Hopkins Institute for Clinical and Translational Research , which is funded in part by Grant Number UL1 TR003098 from the National Center for Advancing Translational Sciences a component of the National Institutes of Health , and NIH Roadmap for Medical Research, and the Johns Hopkins Clinical Research Network .
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What Are The Symptoms Of Chronic Lyme Disease
Despite some skepticism in the medical community, chronic Lyme disease is a growing epidemic in the U.S. This stems partly from the shortcomings of many of the officially recommended Lyme disease tests, which leave too many patients with untreated infections that then become persistent and debilitating.
The following article will cover what you should know about chronic Lyme and provide an introductory but non-exhaustive chronic Lyme disease symptoms checklist.
What Are The Symptoms Of Post
Doctors have known for years that they cannot rely on a physical exam to diagnose early Lyme disease unless they find an erythema migrans rash, Bells palsy, or heart block. Now, Rebman and colleagues from the Johns Hopkins University School of Medicine acknowledge that doctors also cannot count on a physical exam to diagnose Post-treatment Lyme disease syndrome .
In their article published in the journal Frontiers in Medicine, the authors state, Results from the physical exam and laboratory testing our sample of patients with PTLDS did not show a pattern of significant objective abnormalities. However, the most notable exception was the higher rate of diminished vibratory sensation on physical exam among participants with PTLDS.
Following treatment for Lyme disease, it is uncommon to find objective clinical manifestations in patients with PTLDS, according to the researchers. In fact, a much more likely scenario after treatment is the persistence or development of subjective symptoms without any residual or new objective manifestation.
But the authors did discover a collection of symptoms among the Lyme disease patients which, when looked at as a whole, indicated the presence of problems post-treatment. For example, Although only found in a small subset of our sample , two participants met criteria for postural orthostatic tachycardia syndrome, an autonomic condition that has been previously reported following Lyme disease.
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Chronic Lyme Disease Symptom Severity
In LDos chronic Lyme disease survey, over 75% of patients reported at least one symptom as severe or very severe and 63% reported two or more such symptoms. Find out more about LDo peer-reviewed published surveys. The chart below shows the severity of ten common chronic Lyme symptoms.
The survey also found that patients with chronic Lyme disease have high disability and unemployment rates. Over 40% of patients with chronic Lyme disease reported that they currently are unable to work because of Lyme disease and 24% report that they have received disability at some point in their illness.
How Was This Study Done
This longitudinal, prospective controlled study was conducted on 234 early diagnosed and treated patients who met a standardized criteria for acute Lyme disease: prior documented Lyme disease with an erythema migrans rash, no other specific co-morbidities. Patients were evaluated for both specific symptoms and functional impact of symptoms at 6-12 months following their initial Lyme disease diagnosis and treatment. As a control arm of the study the same symptom and functional impact criteria were applied to a comparable cohort of 49 healthy people without prior Lyme disease. The study is the first to also examine and control for the impact of potential confounders, including sex, race, education, heart disease/hypertension, mental health disorders, depression, and prior traumatic life events.
All participants completed a comprehensive standardized series of well validated symptom-based surveys for fatigue, pain, sleep, depression, cognitive symptoms, and quality of life. Clinical outcomes and symptoms were analyzed and compared to non-Lyme infected controls.
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