Best advice about Lyme disease
If you are experiencing symptoms that you think are due to Lyme disease or “chronic Lyme disease”, it is important to know that Lyme disease is transmitted to humans only by infected Ixodes ticks that must be attached for at least 36-48hrs before they can transmit infection. Lyme disease is not a sexually transmitted disease, nor is it transmitted to humans by deer flies, fleas, or mosquitoes. So, if you live in an area where there are no -- or very few -- Ixodes ticks (see tick map on ALDF Home page, http://www.aldf.com ), your chances of getting Lyme disease are none to slim. If that is the case, other possible causes for your symptoms should be considered so that you can be diagnosed properly and then given the appropriate care and treatment that you deserve.
The Institute of Medicine reported that “Acute and chronic pain affect large numbers of Americans with at least 116 million U.S. adults -- about 30% of the population -- burdened by chronic pain alone. The annual economic cost associated with chronic pain is estimated to be $560-635 billion (1).” With such a high incidence of chronic pain, it is reasonable to assume that patients with nonspecific symptoms they believe to be caused by a poorly defined condition called “chronic Lyme disease” might be included in this large group of 116 million Americans. Patients who believe they have “chronic Lyme disease” indeed suffer from significant impairment of health-related quality of life in which chronic pain is a major contributor; in some patients, the deficits in physical health status are equivalent to those of patients with congestive heart failure or osteoarthritis (2). As is the case for patients with chronic pain, some of these patients may consult several different physicians in search of a cause and treatment for their symptoms, often to no avail and at considerable personal expense. Whether such symptoms have anything at all to do with Lyme disease depends on the results of validated and properly performed diagnostic tests.
There are several important issues that must be considered in making a diagnosis of Lyme disease. Although several widely used laboratory tests provide excellent and reliable results when used correctly and under appropriate circumstances, the Food and Drug Administration (FDA) and the Centers for Disease Control and Prevention (CDC) have issued warnings about the use of nonstandard diagnostic tests, as well as evaluating the results of laboratory tests by unvalidated criteria, not recommended by the CDC (http://www.cdc.gov/mmwr/preview/mmwrhtml/mm5405a6.htm).Such warnings are taken seriously and carry great weight among mainstream physicians and research scientists working at universities and State public health laboratories. Despite these warnings, some physicians continue to order nonstandard tests for the diagnosis of Lyme disease, mistakenly believing that these tests -- simply because they give positive results when other tests do not-- are more sensitive; however, the results in most cases are falsely positive and lead to misdiagnosis. To avoid misdiagnosis, only validated FDA-approved tests should be used for the diagnosis of Lyme disease. At present, there are 46 such tests(http://www.accessdata.fda.gov/scripts/cdrh/cfdocs/cfivd/index.cfm).Both patients and physicians are strongly advised to examine this listing to make sure that the diagnostic test being considered for use is in fact FDA-approved.
It also should be noted that the evaluation criteria established by the CDC for interpreting the results of ELISA and Western blots are based on hundreds of independent comparative assays of well-characterized specimens from patients known to have Lyme disease at different stages of development; they are designed to provide maximum sensitivity without compromising specificity and have been shown to perform well under conditions in which the relative risk of the patient contracting Lyme disease is significant. To ignore the CDC criteria, or to replace them with more liberal criteria that have not been validated independently, increases the risk of misdiagnosis.
A false diagnosis of Lyme disease can have dire consequences in that a patient may be subjected to a prolonged and unproven treatment regimen to cure an infection that does not exist; this is often done at considerable personal expense. Aside from prolonging suffering and pain, misdiagnosis denies a patient the opportunity to receive proper care and treatment for the condition actually causing their symptoms. Under such circumstances, the patient is treated very much like a “guinea pig” and becomes a victim of an irrational process in which some unscrupulous practitioners derive significant financial gains from the administration of unproven and in many cases unsafe remedies. Concerned patients should ask their physician to show them the published results of peer reviewed and properly conducted clinical studies, proving that the treatment being proposed is both beneficial and safe. Personal testimonials -- regardless of the number provided-- are often selectively chosen and do not constitute real data or adequate proof. For every testimonial claiming benefit, there are many others showing no benefit.
The most reliable sources of factual, evidence-based information on Lyme disease for physicians, medical practitioners, and the general public are websites sponsored by the CDC (http://www.cdc.gov) , the National Institutes of Health (NIH) (http://www.nih.gov) , and the American Lyme Disease Foundation or ALDF (http://www.aldf.com).Websites sponsored by various Lyme disease patient support groups have been reported to be a source of much false and misleading information (3,4). The reader is referred to the section entitled “Misinformation on Lyme Disease” on the ALDF website (http://www.aldf.com) for a more detailed consideration of some of the issues involved in the diagnosis and treatment of Lyme disease.
- Institute of Medicine (2011). Relieving pain in America: a blueprint for transforming prevention, care, education, and research. Consensus report. Institute of Medicine, http://www.iom.edu/Reports/2011/Relieveing-Pain-in-America-A-Blueprint-for-transforming-Prevention-Care-Education-Research.aspx.
- Klempner, M.S., Hu, L., Evans, J., Schmid, C.H., Johnson, G.M., Trevino, R.P., Norton, D., Levy, L., Wall, D., Kosinski, M., and Weinstein, A. (2001). Two controlled trilas of antibiotic treatment in patients with persistent symptoms and a history of Lyme disease. N. Engl. J. Med. 345: 85-92.
- Cooper, J.D., and Feder, H.M. Jr. “Inaccurate information about Lyme disease on the internet. Ped. Infect. Dis. 12: 1105-1108, 2004.
- Sood, S.K. “Effective retrieval of Lyme disease information on the Web. Clin. Infect. Dis. 35: 451-464, 2002.