Persistent Lyme Disease Symptoms Research Articles

Qualitative Description of the Exertional Symptoms of Participants with Persistent Symptoms of Lyme Disease during a Low Intensity Resistance Training Intervention

Introduction: Greater emphasis needs to be placed on approaches to improve the health-related quality of life of patients with persistent symptoms of Lyme disease (PSLD), but little information exists to inform an exercise professional’s expectations of their supervision of resistance training (RT) programs with PSLD patients. In order to build this knowledge base, a secondary qualitative analysis was performed to explore the RT exertional symptoms of PSLD patients that participated in a 4-week study investigating the feasibility of an RT intervention. Methods: Comments regarding exertional symptoms that were recorded in a daily exercise log were the main source of data for this secondary analysis. A manifest content analysis was performed in order to identify recurrent themes of exertional symptoms experienced by this sample of PSLD patients during RT. Results: The reported findings revealed that strain, discomfort, crepitus, tightness, shaking, and control loss were the major themes of exertional symptoms recorded during the RT intervention. Conclusions: These results provide insights intended to inform the expectations of supervisors of exercise (personal trainers, physical therapists, exercise researchers, etc.) when directing RT programming with patients with PSLD.

Potential Patient-Reported Toxicities With Disulfiram Treatment in Late Disseminated Lyme Disease.

Recently, disulfiram has been proposed as a promising treatment for people suffering from persistent symptoms of Lyme Disease. Disulfiram has several distinct molecular targets. The most well-known is alcohol dehydrogenase, a key enzyme for detoxifying the organism after alcohol ingestion. Other targets and modes of action of disulfiram, that may present problematic side effects, are less commonly mentioned. The French Federation against Tick Borne Diseases (French acronym, FFMVT), which associates three main Lyme patient organizations, MDs and PhDs, has recently been alerted to severe and persistent toxic events in a patient suffering from a late disseminated form of Lyme Disease following disulfiram intake. FFMVT reacted by launching a national call to examine whether other patients in France following a similar treatment could be identified, and what benefits, or side effects could be reported. The statements of 16 patients taking disulfiram have been collected and are presented here. Thirteen out of 16 patients reported toxic events, and seven out of 16 reported benefits for at least part of their symptoms. Based on the collected observations, it seems too early to promote disulfiram as a promising new treatment until the reasons underlying the reported toxicities have been explored, and the results of a well-conducted double blind clinical trial published. The importance of taking into account patient-reported outcomes in Lyme Disease is underlined by the present study.

Disulfiram (Antabuse) Neurotoxicity: Implications of Painful Small Fiber Sensory Polyneuropathy for Lyme Disease and Addiction

This article describes the prototypical clinical presentation, electrodiagnostic and neuropathological findings and treatment of a patient with painful peripheral neuropathy due to disulfiram toxicity. Although a review of the literature fails to reveal cases of painful peripheral neuropathy due to disulfiram toxicity, there has been heightened publicity of its risk in the treatment of persistent symptoms of Lyme disease following a standard of care course of antibiotics known as post-treatment Lyme disease syndrome. This article reviews the etiopathogenesis and diagnosis of predominant small fiber neuropathy resulting from disulfiram neurotoxicity, and offers recommendations for its use in Lyme disease and alcoholism.

Removing the Mask of Average Treatment Effects in Chronic Lyme Disease Research Using Big Data and Subgroup Analysis.

Lyme disease is caused by the bacteria borrelia burgdorferi and is spread primarily through the bite of a tick. There is considerable uncertainty in the medical community regarding the best approach to treating patients with Lyme disease who do not respond fully to short-term antibiotic therapy. These patients have persistent Lyme disease symptoms resulting from lack of treatment, under-treatment, or lack of response to their antibiotic treatment protocol. In the past, treatment trials have used small restrictive samples and relied on average treatment effects as their measure of success and produced conflicting results. To provide individualized care, clinicians need information that reflects their patient population. Today, we have the ability to analyze large data bases, including patient registries, that reflect the broader range of patients more typically seen in clinical practice. This allows us to examine treatment variation within the sample and identify groups of patients that are most responsive to treatment. Using patient-reported outcome data from the MyLymeData online patient registry, we show that sub-group analysis techniques can unmask valuable information that is hidden if averages alone are used. In our analysis, this approach revealed treatment effectiveness for up to a third of patients with Lyme disease. This study is important because it can help open the door to more individualized patient care using patient-centered outcomes and real-world evidence.

Persistent Borrelia Infection in Patients with Ongoing Symptoms of Lyme Disease.

Introduction: Lyme disease is a tickborne illness that generates controversy among medical providers and researchers. One of the key topics of debate is the existence of persistent infection with the Lyme spirochete, Borrelia burgdorferi, in patients who have been treated with recommended doses of antibiotics yet remain symptomatic. Persistent spirochetal infection despite antibiotic therapy has recently been demonstrated in non-human primates. We present evidence of persistent Borrelia infection despite antibiotic therapy in patients with ongoing Lyme disease symptoms. Methods: In this pilot study, culture of body fluids and tissues was performed in a randomly selected group of 12 patients with persistent Lyme disease symptoms who had been treated or who were being treated with antibiotics. Cultures were also performed on a group of ten control subjects without Lyme disease. The cultures were subjected to corroborative microscopic, histopathological and molecular testing for Borrelia organisms in four independent laboratories in a blinded manner. Results: Motile spirochetes identified histopathologically as Borrelia were detected in culture specimens, and these spirochetes were genetically identified as Borrelia burgdorferi by three distinct polymerase chain reaction (PCR)-based approaches. Spirochetes identified as Borrelia burgdorferi were cultured from the blood of seven subjects, from the genital secretions of ten subjects, and from a skin lesion of one subject. Cultures from control subjects without Lyme disease were negative for Borrelia using these methods. Conclusions: Using multiple corroborative detection methods, we showed that patients with persistent Lyme disease symptoms may have ongoing spirochetal infection despite antibiotic treatment, similar to findings in non-human primates. The optimal treatment for persistent Borrelia infection remains to be determined.

Prolonged Therapy for Persistent Lyme Disease Symptoms

Whether prolonged treatment reduces persistent Lyme disease symptoms is controversial. To resolve this issue, investigators in the Netherlands conducted a multicenter, randomized, double-blind, placebo-controlled trial involving 280 Lyme disease patients with persistent musculoskeletal pain, arthritis, arthralgia, neuralgia, sensory disturbances, dysesthesia, …

Supervised Resistance Exercise for Patients with Persistent Symptoms of Lyme Disease.

The rapidly increasing incidence of Lyme disease has become a serious public health problem. Persistent symptoms of Lyme disease occur in over 40% of the 300,000 new cases diagnosed annually in the United States and often include debilitating musculoskeletal pain, fatigue, and poor health-related quality of life. No clinical practice guidelines for Lyme disease currently include resistance exercise partly because of concern over its safety and feasibility in this population. The goal of this pilot study was to evaluate the feasibility and preliminary efficacy of a supervised, low-intensity resistance exercise program in a sample of patients with persistent symptoms of Lyme disease. An uncontrolled resistance exercise intervention was conducted under the supervision of an exercise professional. Participants performed three exercise sessions per week for 4 wk. Each exercise session consisted of one set of varying repetitions of the leg press, seated row, vertical chest press, standing heel raise, and supine abdominal crunch. Outcomes were assessed at baseline and the end of each week of intervention and included musculoskeletal pain, fatigue, health-related quality of life, vitality, and exercise performance. ANOVA and t-tests were performed to assess changes in the study outcomes. Eight patients participated in the exercise intervention. All participants successfully completed the intervention, and there were no adverse events related to exercise. Statistically significant improvements (P ≤ 0.05) were noted in exercise performance and in the number of days out of the past 30 d feeling healthy and full of energy (0.6 at baseline and 4.5 at end of intervention). Although larger and controlled studies are necessary, supervised resistance exercise was feasible and may benefit patients with persistent symptoms of Lyme disease.

Antiphospholipid antibodies in patients with persistent Lyme disease symptoms

Antiphospholipid antibodies in patients with persistent Lyme disease symptoms

The Lyme disease chronicles, continued: Chronic Lyme disease: in defense of the patient enterprise

The Lyme disease chronicles, continued: <i>Chronic Lyme disease: in defense of the patient enterprise</i>

Complement Split Products C3a and C4a in Chronic Lyme Disease

Complement split products C3a and C4a are reportedly elevated in patients with acute Lyme disease. We have now examined these immunologic markers in patients with chronic Lyme disease compared to appropriate disease controls. The study population consisted of 29 healthy controls, 445 patients with chronic Lyme disease, 11 patients with systemic lupus erythematosus (SLE) and six patients with AIDS. The Lyme disease patients were divided according to predominant musculoskeletal symptoms (324 patients) or predominant neurologic symptoms (121 patients). C3a and C4a levels were measured by radioimmunoassay. All patients with chronic Lyme disease and AIDS had normal C3a levels compared to controls, whereas patients with SLE had significantly increased levels of this marker. Patients with predominant musculoskeletal symptoms of Lyme disease and AIDS patients had significantly increased levels of C4a compared to either controls, patients with predominant neurologic symptoms of Lyme disease or SLE patients. Response to antibiotic therapy in chronic Lyme disease was associated with a significant decrease in the C4a level, whereas lack of response was associated with a significant increase in this marker. In contrast, AIDS patients had persistently increased C4a levels despite antiretroviral therapy. Lyme patients with positive single-photon emission computed tomographic (SPECT) scans had significantly lower C4a levels compared to Lyme patients with normal SPECT scan results. Patients with predominant musculoskeletal symptoms of Lyme disease have normal C3a and increased C4a levels. This pattern differs from the increase in both markers seen in acute Lyme disease, and C4a changes correlate with the response to therapy in chronic Lyme disease. C4a appears to be a valuable immunologic marker in patients with persistent symptoms of Lyme disease.

Clinical trials validate the severity of persistent Lyme disease symptoms

Persistent Lyme Disease Symptoms (PLDS) have included fatigue, headaches, poor concentration and memory, lightheadedness, joint pain, and mood disturbances. Evidence-based guidelines committees disagree over the severity of PLDS. The 2004 International Lyme and Associated Diseases Society (ILADS) concluded that PLDS are severe. The 2006 Infectious Disease Society of America (IDSA) guidelines committee concluded that PLDS are nothing more than the "aches and pains of daily living" and an ad hoc International Lyme group concluded that PLDS are "symptoms common in persons who have never had Lyme disease." Clinical trials validate the severity of persistent Lyme disease symptoms. There are 22 standardized instruments used to measure the severity of PLDS among the four published National Institutes of Health (NIH) sponsored double-blind randomized placebo-controlled trials (RCTs). VALIDATING THE HYPOTHESIS: All four NIH sponsored RCTs validate the severity of PLDS. PLDS are as severe as symptoms seen in other serious chronic illnesses, and result in a quality of life lower than for the general population as determined by 22 standardized measures of QOL, including fatigue, pain, role function, psychopathology, and cognition. None of the four RCTs support the IDSA hypothesis that PLDS are nothing more than "the aches and pains of daily living" nor the ad hoc International Lyme group conclusion that PLDS are "symptoms common in persons who have never had Lyme disease." If the QOL of life for these patients is as poor as for patients with other serious chronic diseases, their symptoms need to be addressed by their doctors. Studies differ as to the precise cause of PLDS, the most effective treatments, and whether a cure is possible. But the fact that there is disagreement is not a license for physicians to ignore or turn away patients complaining of PLDS, or to dismiss their symptoms as purely psychosomatic. For physicians, the goal or purpose of treating PLDS should be the same as their purpose in treating other chronic illnesses that result in a poor QOL: vigorous pursuit of a cure, and where a cure proves impossible, amelioration of patients' symptoms and suffering. Even if this hypothesis fails to be apply to more than a fraction of the total Lyme disease population, this still represents a significant number of patients, and these findings could address a neglected aspect of caring for patients with Lyme disease.

Counterpoint: Long-Term Antibiotic Therapy Improves Persistent Symptoms Associated with Lyme Disease

Controversy exists regarding the diagnosis and treatment of Lyme disease. Patients with persistent symptoms after standard (2-4-week) antibiotic therapy for this tickborne illness have been denied further antibiotic treatment as a result of the perception that long-term infection with the Lyme spirochete, Borrelia burgdorferi, and associated tickborne pathogens is rare or nonexistent. I review the pathophysiology of B. burgdorferi infection and the peer-reviewed literature on diagnostic Lyme disease testing, standard treatment results, and coinfection with tickborne agents, such as Babesia, Anaplasma, Ehrlichia, and Bartonella species. I also examine uncontrolled and controlled trials of prolonged antibiotic therapy in patients with persistent symptoms of Lyme disease. The complex "stealth" pathology of B. burgdorferi allows the spirochete to invade diverse tissues, elude the immune response, and establish long-term infection. Commercial testing for Lyme disease is highly specific but relatively insensitive, especially during the later stages of disease. Numerous studies have documented the failure of standard antibiotic therapy in patients with Lyme disease. Previous uncontrolled trials and recent placebo-controlled trials suggest that prolonged antibiotic therapy (duration, >4 weeks) may be beneficial for patients with persistent Lyme disease symptoms. Tickborne coinfections may increase the severity and duration of infection with B. burgdorferi. Prolonged antibiotic therapy may be useful and justifiable in patients with persistent symptoms of Lyme disease and coinfection with tickborne agents.

Persistent Symptoms of Lyme Disease: Not Necessarily Responsive to Antibiotics

Late Lyme encephalopathy and neuropathy can be difficult to diagnose and manage. The encephalopathy usually is associated with impaired memory and