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Lyme Disease: Comments, Clarification and Future Coverage

Massachusetts is not just a hotbed of Lyme Disease; it's a hotbed of debate and legislative action on Lyme Disease. Yesterday, this story about Lyme Disease by WBUR's Monica Brady-Myerov ran on the air and on WBUR.org. Today, WBUR adds this clarification:

Editor's note: Listeners and readers of this story might conclude that the medical establishment is evenly split between those who support a diagnosis of "chronic Lyme Disease" and those who do not. In fact, there is a strong consensus against that diagnosis as an explanation for the long-lasting symptoms some patients experience, and against long-term antibiotics as treatment. The issue remains hotly debated publicly, and WBUR's health blog, CommonHealth, plans to follow it in the coming months.

The story had prompted a stream of comments, including several from people who suffered from long-lasting illness after Lyme Disease. On the other side were commenters like "ED Doc," who wrote that the story "perpetuates a myth that has been scientifically disproven, that there is a disease entity of 'Chronic Lyme Disease.' While I am sure the patients quoted in the story truly suffer these difficult symptoms, there is simply no credible scientific evidence that the symptoms suffered by the patients Ms. Brady-Myerov quotes are due to a chronic infection with Borrelia burgdorferi– the microorganism responsible for Lyme disease."

Indeed, the CDC says here:

Approximately 10 to 20% of patients treated for Lyme disease with a recommended 2-4 week course of antibiotics will have lingering symptoms of fatigue, pain, or joint and muscle aches. In some cases, these can last for more than 6 months. Although often called “chronic Lyme disease,” this condition is properly known as “Post-treatment Lyme disease Syndrome” (PTLDS).

The exact cause of PTLDS is not yet known. Most medical experts believe that lingering symptoms are due to residual damage to the tissues and the immune system that occurred during the infection. Similar complications and auto-immune responses are known to occur following other infectious diseases.

In contrast, a few health care providers tell patients that these symptoms reflect persistent infection with Borrelia burgdorferi. However, there is no credible scientific evidence that PTLDS is caused by persistent infection. More importantly, studies have shown that patients treated with prolonged courses of antibiotics do not do better than patients treated with placebo.

The good news is that patients with PTLDS almost always get better with time; the bad news is that it can take months or even years to feel completely well. If you have been treated for Lyme disease and still feel unwell, see your doctor to discuss how to relieve your suffering. Doctors may want to treat you in ways similar to patients who have fibromyalgia or chronic fatigue syndrome. This does not mean that your doctor is dismissing your pain or saying that you have these conditions instead. It simply means that the doctor is trying to help you cope with your symptoms using the tools available.

You may be tempted to try treatments that are unproven or non-standard in order to feel better. Unfortunately, many fraudulent products claiming to treat “chronic Lyme disease” are available on the internet or through some providers. These products have not been shown to help and can be toxic and even deadly.

Clearly, though, even a national health authority like the CDC has not put the hot debate over long-term effects of Lyme Disease to rest. CommonHealth aims to revisit this issue in the coming months, and to follow action in the Massachusetts legislature related to Lyme Disease. Please click on the "Get in Touch" button below if you know of events or new research worth covering.

This program aired on August 9, 2011. The audio for this program is not available.

Carey Goldberg Twitter Editor, CommonHealth
Carey Goldberg is the editor of WBUR's CommonHealth blog.

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