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.
Has Niaid Looked At Whether Infection Persists After Antibiotic Therapy
Several recent studies suggest that B. burgdorferi may persist in animals after antibiotic therapy. In one study, NIAID-supported scientists found that remnants of B. burgdorferi remained in mice after antibiotic treatment. Another team of NIAID-supported investigators found that intact B. burgdorferi persist in nonhuman primates after antibiotic treatment. It was not possible to culture these bacteria and it is not clear whether they are infectious. More recent work by Hodzic et al. replicated the earlier finding of persisting DNA but non-cultivatable B. burgdorferi after antibiotic treatment using a mouse model. In 2017, scientists at the Tulane National Primate Research Centers, funded in part by an NIH research resources grant, reported evidence of persistent and metabolically active B. burgdorferi after antibiotic treatment in rhesus macaques.
In a first-of-its-kind study for Lyme disease, NIAID-supported researchers have used live, disease-free ticks to see if Lyme disease bacteria can be detected in people who continue to experience symptoms such as fatigue or arthritis after completing antibiotic therapy). This study remains underway.
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
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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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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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Laboratory Methods: Strain Typing
The genotype of the strains of B. burgdorferi that were recovered by culture of skin biopsy or blood samples from the study subjects was determined on the basis of restriction fragment-length polymorphism of the 16S23S rRNA intergenic spacer and classified as ribosomal spacer type 1, 2, or 3. The genotype of most isolates was also determined based on the DNA sequence of the outer surface protein C gene. The methodology for both of these typing methods has been previously published .
Term Implies That Patients Are No Longer Infected With Borrelia
Beyond the fact that the definition of PTLDS excludes most patients, the very language of the term Post Treatment Lyme Disease Syndrome assumes two things. First, that patients have received adequate treatment and second, that the cause of their continuing symptoms is a post infectious disorder. There is no evidence that either of these assumptions is true.
Many case reports document culture-confirmed Lyme from patient biopsies and nobody knows what adequate treatment is for these patients. Patients also point out that syndrome is often used to imply that a medical condition does not exist or that it more psychological in nature than physical .
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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.
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.
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What Is Chronic Lyme Disease
Lyme disease is an infection caused by the bacterium Borrelia burgdorferi. In the majority of cases, it is successfully treated with oral antibiotics. In some patients, symptoms, such as fatigue, pain and joint and muscle aches, persist even after treatment, a condition termed Post Treatment Lyme Disease Syndrome .
The term chronic Lyme disease has been used to describe people with different illnesses. While the term is sometimes used to describe illness in patients with Lyme disease, it has also been used to describe symptoms in people who have no clinical or diagnostic evidence of a current or past infection with B. burgdorferi . Because of the confusion in how the term CLD is employed, and the lack of a clearly defined clinical definition, many experts in this field do not support its use.
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.
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Is Ptlds The Only Research Definition For Chronic Lyme Disease
Research definitions can be loose or quite restrictiveand often depend on the data source. For example, a review of physicians records is likely to rely on physician diagnosis.
What the IDSA proposed here was highly restrictive, but somewhat similar to the entry criteria used in some of the National Institutes of Healths randomized controlled trials for chronic Lyme disease.
These types of trials specifically recruit participants for the study. They may use restrictive entry criteria because they want to make sure that any treatment effect is not affected by other factors .
One known trade-off of using restrictive entry criteria in a study is that it will affect the ability of that trial to be generalized to people who were not included.
Thus, the results of a trial that only includes patients who test positive via the CDCs two-tiered testing protocol for Lyme disease, will not apply to patients who do not test positive or who test positive by western blot alone. If a research definition excludes most patients who are seen by clinicians, it will not apply to most of the clinical population.
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.
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An Alternate Route And A Diagnosis
Ultimately, diagnosed me with Epstein Barr virus infection and leaky gut, which she treated through diet, lifestyle changes, and supplements. A conventional Lyme test came back negative. She said that we could still go ahead and treat for Lyme since it could be a false negative, but I wasn’t ready to take that step without a definitive diagnosis.
After seeing the integrative doctor and implementing her treatment plan, I felt better in many ways, but I still didn’t feel like we had gotten to the bottom of things. My friend pushed me to see a “Lyme literate” doctor and more than a year later, I finally did.
My Lyme doctor finally confirmed what my friend had suspected. A more sensitive, comprehensive test not covered by health insurance provided the missing piece of the puzzle. My doctor also looked for and discovered a rash where I’d been bitten all those years ago, which to this day comes and goes. And so I began a treatment protocol based on guidelines from the International Lyme and Associated Diseases Society , which recognizes that patients with chronic Lyme require individualized treatment that may involve extended courses of antibiotics.
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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Evaluation Of Biosignature Small
The robustness of the findings in cohort 1 were determined by evaluating the biosignature SMMs in cohort 2 PTLDS patients. A less-stringent abundance fold change of 1.25 was used to determine which SMMs behaved similarly in both cohorts. Based on these criteria, 39 SMMs at baseline, 13 SMMs post-treatment, and 19 SMMs at 1-year follow-up produced consistent abundance changes between PTLDS and non-PTLDS patients in both cohorts . Focusing on these SMMs, LDA was performed using both patient cohorts . The accuracy for discrimination of PTLDS and non-PTLDS regardless of cohort was 1 at baseline, .74 post-treatment, and .83 at 1-year follow-up. Both cohorts had overlapping linear discriminant scores, which fell primarily on different sides of zero for PTLDS or non-PTLDS classifications at all 3 time points, indicating that these sets of features are relatively robust.
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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How Is Lyme Disease Treated
For early Lyme disease, a short course of oral antibiotics such as doxycycline or amoxicillin is curative in the majority of the cases. In more complicated cases, Lyme disease can usually be successfully treated with three to four weeks of antibiotic therapy.
In patients who have non-specific symptoms after being treated for Lyme disease and who have no evidence of active infection , studies have shown that more antibiotic therapy is not helpful and can be dangerous.