Phillips: Unite in fight against Lyme disease
The Cape Codder on townonline.com
A Florida State quarterback is found half-naked and disoriented in downtown Tallahassee. Pop singer Daryl Hall cancels part of his national concert tour. Author Amy Tan is writing a new book about it.
The picture is clear: Lyme disease has hit the front burner.
Lyme disease is a major public health problem and growing crisis. It's the most prevalent bug-borne illness. According to the Centers for Disease Control and Prevention, new cases are reported in about 20,000 people yearly and this number represents a 10-fold underestimate.
Lyme disease is caused by a complex bacterial agent carried and spread by ticks. The Lyme bacteria have the ability to evade immune destruction, entrench themselves deep within tissues and migrate throughout the body with impunity causing a multi-system illness that can be baffling to many physicians.
The result is that one tiny tick bite can cause innumerable symptoms running the gamut from muscle and joint pain to heart disease to neurological and even psychiatric illness. Lyme patients may be misdiagnosed as having other serious diseases such as lupus, multiple sclerosis, rheumatoid arthritis and psychiatric disorders. The take-home message is Lyme disease may be hard to diagnose and difficult, if not impossible, to fully eradicate if not caught early.
Why is that?
First, there is no single reliable diagnostic laboratory test. The common two-tiered blood test cannot be solely relied upon for diagnosis. The initial ELISA screening test can give up to 50 percent false negative results, and just as disheartening, many laboratories interpret the second Western Blot test by highly restrictive CDC criteria that miss many cases.
Better tests are described in the medical literature, but haven't seen the light of day. So some patients seek more sophisticated testing by approved reference laboratories - labs within a single state that get samples from around the country - but which often don't take their insurance companies and frequently pay for their tests out-of-pocket.
Furthermore, a person with Lyme disease may be co-infected with other organisms, and "co-infections" often require different antibiotic therapy compared to Lyme.
Second, there is no universally accepted treatment. During chronic infection, the organism burrows deep into tissues that some antibiotics can reach only marginally. This is but one of many reasons why a two-to-four-week treatment cannot eliminate chronic infection.
The consensus opinion of the International Lyme and Associated Diseases Society is that an individualized treatment approach is necessary based on clinical judgment.
ILADS is a multi-specialty medical society comprised of virtually all sub-specialists who treat Lyme disease, including infectious disease specialists, neurologists, rheumatologists, psychiatrists, endocrinologists and internal medicine physicians. We've published diagnostic and treatment guidelines in peer reviewed infectious disease medical literature, which stand in stark contrast to the guidelines of some infectious disease specialists who reject voluminous medical data documenting persistent infection and co-infection.
What should be done?
We, the clinical doctors who man the frontlines of treatment, extend an olive branch to our colleagues with divergent opinions to work together to develop practical diagnostic and treatment protocols.
We believe it is essential for patients with Lyme disease symptoms to be tested for multiple tick-borne disorders. We know better tests exist and recommend the entire medical community push for them.
We encourage the education of all medical personnel about the array of Lyme disease symptoms and its related infections in order to increase the number of health care providers who can recognize and treat these illnesses.
In the early days of the AIDS epidemic, activists screamed for attention to get medical care. We hope Lyme patients are not forced to follow the same path, but we will not be content until Lyme disease is yesterday's news.
Physician Steven E. Phillips of Wilton, Conn., is president of the International Lyme and Associated Diseases Society.
