Critical Needs and Gaps in Understanding Prevention, Amelioration, and Resolution of Lyme and Other Tick-Borne Diseases The Short-Term and Long-Term Outcomes: Workshop Report (2011) / Chapter Skim
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9 Closing Panels
9 Closing Panels
Pages 177-192
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From page 177... ...
To broaden the discussion, the committee invited the general audience to comment following the panel discussion to elicit views or ideas that were not captured during the panel presentations. After reviewing the presentations and comments in the listening sessions before the workshop and during the workshop, the committee noted that the language and terminology used to describe various facets and manifestations of Lyme disease and coinfecting conditions were inconsistently applied and have likely contributed to misunderstandings and even inaccuracies.
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From page 178... ...
In contrast, the literature and clinicians' experience with persistent symptoms following antibiotic treatment of Lyme disease are more limited. Regardless of whether one names it chronic Lyme disease or post-Lyme disease syndrome, patients and clinicians are confused about how to proceed when patients report symptoms after a course of antibiotic treatment.
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From page 179... ...
Another category is patients who experience persistent symptoms following antibiotic treatment of confirmed Lyme disease. It is called different names, but for this discussion, it will be referred to as "post-treatment Lyme disease syndrome." It is known that the visible, physical signs of early Lyme disease respond to appropriate antibiotic treatment, but 10 percent of late Lyme disease patients with Lyme disease arthritis still have joint disease after antibiotic treatment.
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From page 180... ...
The goals would include • Formalizing reproducible case definitions or phenotypes of post treatment Lyme disease syndrome; • Performing uniform evaluations of clinical symptoms and signs with validated instruments from a variety of medical disciplines; • Developing better tests for indentifying biomarkers that can be used for diagnosis, measuring the efficacy of therapy, and establishing prior exposure in patients being evaluated for post-treatment Lyme disease syndrome; • Establishing a biorepository of blood and tissue from patients with various stages or categories of Lyme disease; • Analyzing measurement tools and tests for sex-based differences in performance; and • Developing an evidence-based clinical guideline for post-treatment Lyme disease syndrome that is based on knowledge of the patho physiology of the illness. CRITICAL NEEDS AND GAPS IN UNDERSTANDING TICK-BORNE DISEASES: PATHOGENESIS PERSPECTIVE Linda K
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From page 181... ...
All vaccine prevention strategies require continued studies of tick-borne disease pathogenesis to better understand the tick and pathogen life cycles and the response of the mammalian host to the tick and its pathogens. Bockenstedt noted that a demand for better diagnostic tests should not overshadow the need to educate clinicians on the use and limitations of the current diagnostic tests for tick-borne diseases.
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From page 182... ...
One way to approach the research gaps and opportunities is to use the traditional triad of medical science: prevention, identification (including coinfections) , and treatments (including disease pathogenesis)
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From page 183... ...
The question also remains whether the whole-genome survey studies described in the pathogenesis chapter can be translated into human clinical studies that will allow scientists to identify those targeted areas in pathophysiology to create new interventions. Finally, Dumler noted that large-scale human clinical studies that have sufficient statistical power are needed.
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From page 184... ...
The challenge starts with the lack of agreement among stakeholders on the definitions of the various terms, including Lyme borreliosis, disseminated Lyme borreliosis, late Lyme borreliosis, chronic Lyme disease, and post-Lyme disease syndrome and symptoms. Agreeing upon a lexicon is crucial both for the diagnosis and the appropriate management of patients who are suffering now and for the basic research for the future.
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From page 185... ...
and interpretive laboratory criteria strictly applied, including use of appropriate reaction cut-off controls to minimize overreading of immunoblot reactions. Finally, as many panelists noted, clinician education about appropriate use of diagnostic tests for Lyme borreliosis, appreciation of predictive values, and interpretation of clinical significance of results is needed.
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From page 186... ...
for his part in making this workshop a reality. His work, together with his colleagues on the House Appropriations Committee, led to the recognition that we face a serious national Lyme disease and tick-borne disease problem requiring study.
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From page 187... ...
That definition, designed specifically and only for surveillance, is often misused as the definitive diagnostic criteria in the clinical setting, so its use is misunderstood in the general medical community. Patients, physicians, and scientists must have a better case definition, expanded to include the entire emerging spectrum of Lyme disease and tick-borne coinfections.
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From page 188... ...
Finally, "post-Lyme disease syndrome," a derogatory label that subtly suggests a patient no longer has a disease and more likely suffers a psychological condition, should be stricken from the diagnostic alternatives unless it can be proven with scientific accuracy that a statistically significant number of patients presenting with chronic Lyme disease symptoms are actually disease free. Critically important research for the 21st century should include • Research on the characterization of borrelia genotypes; • Informatics to create national databases that capture every aspect of the disease in the ecosystem, the vectors, and the patients; and • Nothing short of a "Manhattan-like project" all-out effort to ad dress the tick-borne disease burden on patients and on society.
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From page 189... ...
The CDC criteria prejudice the research that relies on it because, by definition, it eliminates the possible inclusion of the vast majority of Lyme disease patients. Medical progress should no longer be impeded by the polarizing controversy that has characterized Lyme disease research in the past.
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From page 190... ...
One participant noted that the various disciplines involved, the clinicians, and the patient advocacy community each have a piece of the puzzle. With more collaboration, the field would have advanced further in the past 30 years.
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From page 191... ...
Borrelia burgdorferi, which is the most common strain in the United States and also occurs in Europe, tends to cause Lyme disease arthritis. Borrelia garinii, which is strongly associated with neuroborreliosis, and Borrelia afzelii, mainly causing skin manifestations, are more common causes of Lyme borreliosis in Europe.
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From page 192... ...
A few observations from the presentations can be highlighted: • The philosopher Nietzsche once stated that "the most common form of ignorance is forgetting what it is that we are trying to do." For Lyme disease and other tick-borne diseases, as noted by Pamela Weintraub, the goals are the reduction in the morbidity and the mortality of this group of diseases, the reduction of the burden of disease, and the creation of better strategies for prevention, control, and amelioration. • Weintraub noted that perhaps the number one problem that limits progress toward these goals is the polarity that exists between pa tients and some of the medical community.
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