Lyme Disease Shirts: Ignorance is a choice...

It seems that everywhere we go, we run into a wall of deliberate ignorance...and I am growing weary. It is time for a change. It is time for compassion and understanding. It is time for you, our doctors, to admit that you can't fit Lyme Disease into a pretty little box and call it good. It is a complex, multi-systemic bacterial infection that wreaks havoc on entire families and communities. It is time for you to take a stand and start saving our lives.

You can buy this new LYME DISEASE SHIRT online at www.cafepress.com/lymiesunite

Long Term Antibiotics for Lyme Disease

Bethesda, MD, June 21, 2009 - Governor M. Jodi Rell today announced she has signed a bill allowing doctors to prescribe long-term antibiotics for a patient clinically diagnosed with Lyme disease without fear of sanction for state health regulators. The International Lyme and Associated Diseases Society (ILADS (www.ILADS.org)) applaud Connecticut legislature for unanimously passing the bill and the governor for signing a bill that will protect physicians who treat Lyme disease.

FOR IMMEDIATE RELEASE

“The fact is that infection with the bacterium that causes acute Lyme disease, Borrelia burgdorferi, may also cause a chronic, complex, and often life altering disease that can be highly difficult to diagnose. Reliable diagnostic tests are not yet available,” says Daniel J. Cameron, MD, MPH, president of ILADS, “Chronic Lyme disease patients may face a long hard fight to wellness.”

The bill addresses acute and chronic presentations of Lyme disease and includes a clinical diagnosis of Lyme disease as determined by a physician “…that is based on knowledge obtained through the medical history and physical examination alone, or in conjunction with the testing that provides supportive data for such clinical diagnosis.”

Despite all the progress in raising public awareness of Lyme disease since its discovery in state in the state of Connecticut in the 1970s, the numbers and complexity of Lyme disease continue to grow. The bill offers hope that more physicians knowledgeable about Lyme disease will be encouraged to practice within the State of Connecticut.”

“One of the burdens of Lyme disease, finding treatment, will be lifted from their shoulders, as this law offers hope to residents that more physicians who are knowledgeable about Lyme disease will be encouraged to practice within the State of Connecticut, according to Maggie Shaw, Newtown Lyme Disease Task Force, a patient leader in the Connecticut effort.

ILADS www.ilads.org is a nonprofit, international, multidisciplinary medical society, dedicated to the diagnosis and appropriate treatment of Lyme and its associated diseases. ILADS promotes understanding of tick-borne diseases through research and education and strongly supports physicians and other health care professionals dedicated to advancing the standard of care for Lyme and its associated diseases.

Media contact: Barbara Buchman Lymdocs@aol.com

Click HERE for the direct link to the story.

The Lyme Disease Controversy

The CDC clinical criteria for Lyme Disease which exist for the purpose of monitoring the rate of Lyme disease nationally are quite narrowly defined in order to ensure a high degree of specificity in the diagnosis. These criteria are mainly useful for the early stages and rheumatological presentations of Lyme Disease,such as when a patient appears with an erythema migrans rash, arthritis, a Bell's palsy, or early central neurologic Lyme disease (meningitis or encephalitis). The CDC criteria are not very helpful for helping the clinician to detect late stage neurologic Lyme Disease. For example, the most common manifestation of late neurologic Lyme Disease is cognitive dysfunction (often referred to as "encephalopathy"). A patient who presents with new onset encephalopathy and a positive blood test for Lyme Disease would not be considered by the CDC to be a case of Lyme disease. Although the CDC recognizes that Lyme encephalopathy exists, encephalopathy is not part of the "surveillance case definition". Hence, physicians who rely on the narrow surveillance case criteria of the CDC for clinical diagnosis will fail to diagnose some patients who in fact do have Lyme disease; in these cases, the patient's treatment will either not occur or be delayed. Such delay in treatment may result in an acute treatable illness becoming a chronic less responsive one.

Other physicians who use a broader more inclusive set of clinical criteria for the diagnosis of Lyme disease will make the diagnosis of Lyme Disease and initiate treatment. The latter group of doctors, by treating some patients for "probable Lyme Disease", will make use of antibiotic responsiveness to confirm their diagnostic impression. These physicians, by erring on the side of not letting a patient with probable Lyme Disease go untreated, will help many patients who otherwise would not get treatment; undoubtedly, however, because of the inclusiveness of their diagnostic approach, these physicians will also treat some patients with antibiotics who do not have Lyme Disease. These physicians would argue that the serious consequences for physical, cognitive, and functional disability associated with chronic Lyme Disease outweigh the risks of antibiotic therapy.

Both sets of doctors are practicing medicine in a reasonable fashion based on the application of certain diagnostic principles, although the therapeutic approaches differ considerably stemming from the narrow vs broad criteria for diagnosis. This is the essence of the medical controversy surrounding chronic Lyme disease. Until medical doctors have a test that definitelyy identifies the presence or absence of infection (and such a test does not yet exist), the controversy about the diagnosis and treatment of chronic Lyme Disease will continue. (posted by my friend K.N.)