Home Facts Post Treatment Lyme Disease Syndrome

Post Treatment Lyme Disease Syndrome


What Were The Major Findings

Dr. Kalpana Shere-Wolfe on Post Treatment Lyme Disease Syndrome

Post-treatment levels of the blood protein CCL19 greater than 111.67 pg/mL one month after completion of antibiotic therapy was associated with symptoms that persisted 6 or 12 months later. The level of CCL19 also continued to be elevated in the blood of these patients, above the level of 79.28 observed in healthy controls, even 1 year after treatment with antibiotics. On the other hand, CCL19 levels returned to normal in Lyme disease patients who returned to health after treatment.

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What Is Post Treatment Lyme Disease

The term PTLDS was first proposed in 2006 by the IDSA in its Lyme guidelines. It specifically incorporates the CDC surveillance case definition, meaning that a patient must satisfy the CDC surveillance criteria to be included in the term PTLDS.

The guidelines state, Inclusion criteria: An adult or child with a documented episode of early or late Lyme disease fulfilling the case definition of the Centers for Disease Control and Prevention.

When the IDSA proposed the term, the authors said it was an attempt to provide a framework for future research on this subject and to reduce diagnostic ambiguity in study populations.

What Is Post Treatment Lyme Disease Syndrome

PTLDS is much easier to define than chronic Lyme. After receiving standard treatment for Lyme , some people still continue to have clinically relevant pain, fatigue, sleep disturbance, depression, and lower quality of life. Usually, the blood tests for these people are normal. This has been well documented in several studies.

PTLDS affects between 10 and 20% of people treated for Lyme, according to official estimates. Other studies show that mild symptoms, whether clinically relevant or not, remain for half or more of patients after treatment.

What causes PTLDS? There are several possibilities.

  • Bacteria that remain even after aggressive antibiotics
  • The inability of some antibiotics to kill Borrelia burgdorferi in biofilm-like structures.
  • Inflammatory Borrelia burgdorferi components remain after the bacteria are killed.

The question then becomes why do 10 -20% of people treated for Lyme not recover completely? With 300,000 Lyme cases per year just in the US, that could leave 60,000 people per year who deal with chronic, long-lasting symptoms. One study estimates that by 2020 the cumulative number of people dealing with PTLD could be as high as 1.9 million.

Genetics can play a role in how well treatments for Lyme disease work.

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Update Of The Swiss Guidelines On Post

Publication Date: 04.12.2016 Swiss Med Wkly. 2016 146:w14353

Johannes Nemeth, Enos Bernasconi, Ulrich Heininger, Mohamed Abbas, David Nadal, Carol Strahm, Stefan Erb, Stefan Zimmerli, Hansjakob Furrer, Julie Delaloye, Thierry Kuntzer, Ekkehard Altpeter, Mathias Sturzenegger, Rainer Weber, for the Swiss Society for Infectious Diseases and the Swiss Society for Neurology

Impact On Life Functioning


In order to capture the impact of health status on life functioning, the 36-item Short Form Health Survey, Version 2 , was administered at each study visit. It has been designed to study eight health attributes and has been shown to have high reliability and validity across a range of populations . Each of the 36 items in the measure loads onto one of eight subscales: Physical Functioning, Role Physical, Bodily Pain, General Health, Vitality, Social Functioning, Role Emotional, and Mental Health. Raw scores of 0100 are generated for each subscale, and then scores are adjusted using a linear transformation to a mean of 50 and a standard deviation of 10 using 1998 general population norms . Lower scores reflect more negative impact of health status on life functioning. In our sample, we found Cronbachs of > 0.70 for all subscales, with 5/8 subscales > 0.90.

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Study Shows Evidence Of Severe And Lingering Symptoms In Some After Treatment For Lyme Disease

In a study of 61 people treated for the bacteria that causes Lyme disease, Johns Hopkins researchers conclude that fatigue…

In a study of 61 people treated for the bacteria that causes Lyme disease, Johns Hopkins researchers conclude that fatigue, pain, insomnia and depression do indeed persist over long periods of time for some people, despite largely normal physical exams and clinical laboratory testing.

Post-treatment Lyme disease syndrome is a real disorder that causes severe symptoms in the absence of clinically detectable infection, says John N. Aucott, M.D., associate professor of medicine at the Johns Hopkins University School of Medicine and director of the Johns Hopkins Lyme Disease Clinical Research Center.

The findings, published in the December issue of Frontiers in Medicine, could spur further investigation into the cause of persistent symptoms, a source of medical controversy. As Lyme disease rates have steadily climbed in the United States since it was first recognized in the mid-1970s, so have reports of a collection of symptoms that patients commonly refer to as chronic Lyme disease. Experts in the field have questioned the validity of this term because of the lack of direct evidence in this group of patients of ongoing infection with Borrelia burgdorferi, the bacterium that causes Lyme disease.

Other Johns Hopkins researchers who participated in this study include Alison W. Rebman, Ting Yang, Erica A. Mihm, Mark J. Soloski and Cheryl Novak.

Pay Attention To Your Environment

When you feel depressed, foggy, headachy, in pain, or wiped out, take notice of what is happening around you. What is going on in your life? Are you overextending yourself, working too much, neglecting your nutritional needs, spending too much time indoors, not sleeping enough or too much? Is there an external factor that is triggering an emotional response? Are you stressed?

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Is Ptlds Really A Set Back Or Just Part Of The Healing Process

Our bodies were designed to self-heal. But this can only occur when our natural healing processes are supported. The first step to healing, though, is shifting your perspective. You must believe that you can overcome PTLDS and that healing takes time and is a journey. In fact, it is even possible to learn to embrace and enjoy the healing process.

This might include learning about and trying new therapies to aid you in your recovery, such as Emotional Freedom Technique , Neuro emotional technique , and ACMOS. Nutrition is another key factor in healing and health. Eating to support your immune function can also be something from which you harvest joy. Your diet is also something that you can control.

If you can calm your nervous system, fuel your immunity through detox and diet, eliminate triggers, open your mind to alternative therapies, and write yourself in as the hero of your healing journey, you will find that there is a light at the end of the Lyme tunnel.

The Experience Of Lyme Disease

Solving the Puzzle of Post Treatment Lyme Disease Syndrome/Combating Chronic Lyme

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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Is There Something Here Possible Mechanisms For The Persistence Of Symptoms

The significance, etiology, and perpetuation of PTLDS remain poorly understood. As a result, controversy in both the research and clinical realms exist surrounding each of these unknowns. There are three main, competing hypotheses of PTLDS pathogenesis. The first hypothesis posits the potential for an ongoing host inflammatory response independent of ongoing infection as suggested by molecular mimicry in antibiotic refractory late Lyme arthritis and anti-neuronal antibodies in PTLDS . Alternatively, inflammation may be driven by either occult persistent infection, as suggested by a recent mouse model of antibiotic-treated Borrelia burgdorferi infection . These biologic explanations warrant further research that falls outside the scope of this paper.

Differences And Similarities Between Chronic Fatigue Fibromyalgia And Ptlds

Many patients complaining about increased fatigue or generalised pain associate their condition with a preceding infection . Symptoms of PTLDS may have an aetiological and phenomenological overlap with chronic fatigue syndrome, fibromyalgia and other chronic pain syndromes.

As shown in table 7, the diagnostic criteria of chronic fatigue and fibromyalgia do substantially overlap with PTLDS, and the clinical differentiation between fibromyalgia, chronic fatigue and PTLDS may, by definition, be blurred. However, the diagnosis of PTLDS requires a previously documented infection with B. burgdorferi and a plausible association between Lyme borreliosis and the beginning of persisting symptoms that were not present before the onset of B. burgdorferi infection.

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Defining Patient Subgroups: Post

Patients with persistent symptoms related to Lyme disease likely represent a heterogeneous population, which includes previously untreated patients, as well as those treated patients who remain symptomatic. As a result, some will manifest primarily patient-reported symptoms while others will present with symptoms in conjunction with objective, physical findings. This heterogeneity is further complicated by variation in terminology and the definitions used by different groups in the field.

Figure 3. A schematic of clinical- and research-defined patient subgroups among those with persistent symptoms associated with Lyme disease . The size of each patient subgroup is not meant to represent actual population frequency, as prevalence data is extremely limited. IDSA, Infectious Diseases Society of America ILADS, International Lyme and Associated Diseases Society CLD-PT, Chronic Lyme Disease-Previously Treated CLD-U, Chronic Lyme Disease-Untreated IgG, Immunoglobulin G CFS, Chronic Fatigue Syndrome FM, Fibromyalgia.

How To Treat Post Lyme Disease Syndrome

Sick For Years with Post

This article was medically reviewed by Erik Kramer, DO, MPH and by wikiHow staff writer, Jennifer Mueller, JD. Dr. Erik Kramer is a Primary Care Physician at the University of Colorado, specializing in internal medicine, diabetes, and weight management. He received his Doctorate in Osteopathic Medicine from the Touro University Nevada College of Osteopathic Medicine in 2012. Dr. Kramer is a Diplomate of the American Board of Obesity Medicine and is board certified.There are 13 references cited in this article, which can be found at the bottom of the page. This article has been viewed 2,960 times.

Most people who contract Lyme disease are cured after a single round of antibiotics. However, some develop symptoms that last months, if not years, after that initial treatment. This condition is called post Lyme disease syndrome, or post-treatment Lyme disease syndrome , and doctors have struggled to understand and treat it.XTrustworthy SourceCenters for Disease Control and PreventionMain public health institute for the US, run by the Dept. of Health and Human ServicesGo to source If you were treated for Lyme disease and are still experiencing symptoms, find a doctor you trust who will listen to you and take you seriously. They can work with you to design a course of treatment that helps control or alleviate your symptoms.XTrustworthy SourceHarvard Medical SchoolHarvard Medical School’s Educational Site for the PublicGo to source

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How Was This Study Done

We evaluated and followed seventy-six participants with physician-documented erythema migrans, the classic bulls-eye rash associated with Lyme disease, and 26 healthy controls with no history of Lyme disease. Sixty-four inflammatory markers were measured in blood samples taken at each visit for a total of 6 visits over 1 year. Levels of inflammatory markers in patients with and without persistent post-treatment symptoms were compared to those in healthy controls.

Chronic Lyme Disease Complex Vs Post

While Chronic Lyme Disease Complex and Post-Lyme Disease Syndrome may seem similar, they are very different from each other and knowing the difference may be essential for achieving symptom remission for a Lyme disease patient. Post-Lyme Disease Syndrome is a diagnosis given to patients who continue to experience symptoms like depression, fatigue, and muscle/joint aches after being diagnosed and treated for Lyme disease with the recommended antibiotic regimen .

Envita Medical Centers doesnt make any guarantee of outcomes. Results are not typical and will vary from person to person and should not be expected.

Post-Lyme Disease Syndrome is always characterized by a Lyme borreliosis infection and while it may involve many other infections including viral, bacterial, and fungal, those infections are controversially not recognized as part of PLDS and frankly are rarely tested for properly.

You may have heard of Chronic Lyme Disease or even Chronic Lyme Syndrome. It is important to know that Post-Lyme Disease Syndrome was previously recognized as Chronic Lyme Syndrome, but the medical community no longer recognizes that diagnosis and it is now considered an outdated term.

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Why Are Antibiotics The First Line Of Treatment For Lyme Disease

The use of antibiotics is critical for treating Lyme disease. Without antibiotic treatment, the Lyme disease causing bacteria can evade the host immune system, disseminate through the blood stream, and persist in the body. Antibiotics go into the bacteria preferentially and either stop the multiplication of the bacteria or disrupt the cell wall of the bacteria and kill the bacteria . By stopping the growth or killing the bacteria the human host immune response is given a leg up to eradicate the residual infection. Without antibiotics, the infection in Lyme disease can evade the host immune system and more readily persist.

Elisa And Western Blot Tests Are Outdated And Inadequate

Good, bad, and ugly side of Post Treatment Lyme Disease (PTLDS)

The current standards for Lyme disease testing, the Elisa and Western Blot, are outdated and inadequate for definitively diagnosing and quantifying Lyme borreliosis additionally, these tests fail in detecting and accurately quantifying the presence of any co-infections that may be present. To make matters worse conventional testing often provides false negatives when diagnosing Lyme borreliosis, resulting in a monumental failure to provide critical early detection and treatment to patients .

Fortunately, Envita supports newer and much more accurate technologies including DNA sequencing to replace the archaic Western Blot and Elisa for a more sensitive diagnosis that relies on the latest genetic information. While this technology is still in research and development, DNA sequencing is an incredibly powerful tool in the battle against Chronic Lyme Disease Complex that can not only conclusively diagnose Lyme borreliosis and its many co-infections but can also give quantified data on these infections. The combination of tick-borne infections, and secondary infections such as viral, fungal, and parasitic co-infections can lead to resistance to treatment and other difficulties in providing care . DNA sequencing provides conclusive and quantifiable data on a patients total infectious load leading to a better diagnosis and treatment for patients suffering from Chronic Lyme Disease Complex while providing a more accurate way to track the progress of the patients treatment.

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Study Design And Timeline

After consenting to participate, study participants completed an initial visit during their acute illness and then were followed over a 6-month period of time, including visits occurring after completion of a three-week course of doxycycline, at 4 weeks post-treatment, 3 months post-treatment, and 6 months post-treatment. During the initial, pre-treatment study visit, self-reported demographic and medical history data and two-tier antibody testing for B. burgdorferi were performed. At all study visits, participants underwent a physical exam, were asked about self-reported symptom that were present during the prior interval, and completed self-administered, standardized surveys.

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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Chronic Lyme Disease Vs Post

Patients typically use the term chronic Lyme disease to describe the cluster of symptoms that started after getting Lyme disease and that persist despite having received a course of antibiotic treatment which has been deemed curative by the Infectious Diseases Society of America. Patients say, Im not cured. I have symptoms now that I never had before Lyme disease. Im fatigued 90% of the day. My muscles ache. My brain is in a fog. I cant think clearly any more. Im super sensitive to light and sound. What is going on? Chronic Lyme disease does exist Im a living example of it!

Whatever one calls it, the experience is the same. Most often these patients experience profound fatigue, pain, and/or cognitive impairment. Mild to moderate levels of depression and anxiety may also accompany these symptoms, as the functional limitations can lead to social isolation, inability to work, and loss of sense of ones identity as a provider, caretaker, or friend. Sometimes patients find themselves identifying with Job the just and good man in the Bible whose life was wrecked by illness, death of loved ones, and economic disaster he felt tormented by God.

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Similarity To Other Post


Persistent, post-infectious symptoms of illness have also been reported following other infectious diseases. Hickie et al. described disabling fatigue, musculoskeletal pain, neurocognitive difficulties, and mood disturbance in 12% of 253 participants after acute infection with Epstein-Barr virus, Q fever, or Ross River virus after 6 months. This post-infective fatigue syndrome occurred with similar incidence and presentation across the different infectious triggering events and was predicted largely by severity of the acute illness rather than by demographic, psychological, or microbiological factors. Infectious diseases, including Lyme disease, have also been implicated in post-infectious fibromyalgia, a syndrome with similar symptoms to PTLDS that has a proposed pathophysiology of central sensitization to chronic pain . It is unknown whether these post-infectious syndromes, including those symptoms reported by our cohort, share a common mechanism that results in their similar clinical phenotypes.

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