CDC Letter to Patients Requesting Help

-----Original Message----- From: NCID/VBI BZB Public Inquiries (CDC)

Sent: Tuesday, February 01, 2011 3:18 PM

To: XXXXXXXXX

Subject: RE: Lyme disease inquiry

Hello,

Your inquiry was forwarded to CDC's Division of Vector-Borne Diseases. We are sorry to hear of your health issues. Please be assured that CDC is constantly reviewing the scientific literature and makes recommendations according the quality of the scientific evidence. At this juncture, the risk of extended antibiotic treatment well outweighs any perceived benefits. As a public health agency, we are concerned not just about those with true Lyme disease, but also the multitudes of people being misdiagnosed with Lyme disease and treated for a disease that is not the cause of their symptoms.

Many of the statements that you make in your email are not accurate, and are examples of the type of misinformation that is spread through the internet and many advocacy groups regarding Lyme disease. In fact, if someone is not diagnosed until later stages of illness, IV antibiotics are recommended (not oral). That may not have been the case back then, but scientific evidence has demonstrated that to be the case. Unfortunately, there are a small number of people, who receive appropriate treatment, still continue to have symptoms. The cause of this is unknown, but there has been no evidence to support the idea that these people are still actively infected. There is a lot of current research on this front, and the leading hypothesis at this time is that it is an autoimmune response (this is not that unusual in infectious diseases). The mainstream medical community has searched for the cause for these symptoms, and there have been 4 placebo controlled clinical trials to assess whether continued antibiotic treatment was helpful for these patients. No long lasting improvement was shown over placebo. Anecdotes of recovery with nonstandard treatments are shared widely, but you can't base scientific recommendations on anecdotes. It is incumbent upon the proponents of continued and nonstandard treatment for Lyme disease to do the research needed to demonstrate the position that they so strongly believe in. In the meantime, there are many doctors and laboratories that operate a "for profit" business diagnosing anyone with Lyme disease. The reason some clinicians have been brought up on disciplinary charges is not because they operate outside the mainstream, it is because patients have suffered dire consequences from their experimental treatments, and some have even died.

Sincerely,

Centers for Disease Control and Prevention

Division of Vector-Borne Diseases

Bacterial Diseases Branch

Fort Collins, Colorado

email:dvbid@cdc.gov