Jenna’s Lyme Blog

I will go on the record once more to say that it will be scientific researchers who will unlock the mystery of chronic Lyme disease (and in fact, if any of the IDSA panel had given even a cursory glance at the significant findings with respect to DNA/Lyme  discoveries there would have to be some kind of change to the IDSA Guidelines.)  I think it is appropriate to add the additional caveat:  Politicians will become involved whether they want to or not.

As the number of the infected soar, and the number of those who truly suffer from lack of care continues to spiral into numbers unknown and not counted, it is only a matter of time before the power is taken out of the hands of the obviously dishonest medical organization “The Infectious Disease Society of America”, and put into the hands of a third party without any interest, attachment to outcome, financial or otherwise.

(Remember that the pride of some of these medical doctors who have invested most of their careers to a certain expertise…the pride involved is so powerful it cannot be measured.)

Health.com reported after the press release on the official review.

“… the committee’s affirmation of the guidelines is seen by some to be a whitewash because, they claim, the review process was biased.

Dr. Robert Bransfield, president of the International Lyme and Associated Diseases Society, said: “How can there be such total consensus with any scientific issue? It’s beyond comprehension.”

Bransfield added, “It makes me wonder about the accuracy of the process. This is what everybody was expecting that they would do: a process that would rubber-stamp it and basically validate what was there before. It’s a concern because it does compromise the best interest of patients.”

Another critic, Dr. Raphael B. Stricker, a San Francisco physician who treats chronic Lyme disease, said that “when the panel votes eight-nothing on almost every single recommendation, that suggests that there is something wrong with the process.

“Until we get a really objective review by an objective panel that’s not all in Infectious Diseases Society of America’s pocket, you are going to get the kind of thing you see with this, and that’s a problem,” Stricker said.

Another excellent response to the IDSA vote comes from Dr. Elizabeth Maloney in The Star Tribune (.com):

Dr. Maloney says, “The IDSA is concerned about the “overuse” of antibiotic treatment in patients with persistent symptoms. It states that the evidence doesn’t support additional antibiotics and recommends against retreatment. The conclusions are based on the results of four retreatment trials funded by the National Institutes of Health. However, a careful reexamination of that evidence found that two of the studies were so improperly designed that they should be ignored. The other two demonstrated one patient type that benefited from additional treatment.

Thus, while the IDSA’s viewpoint was emphasized in the April 12 article, it isn’t scientifically valid. This may surprise the many physicians who follow the IDSA guidelines on Lyme disease. But science and medicine are supposed to be based on the facts, not on majority rule, and the evidence clearly demonstrates that retreatment helps some patients.

What we don’t know is who else should be offered additional antibiotic treatment and what form that treatment should take. Studies to answer these questions have yet to be done, but today’s patients can’t wait for tomorrow’s research.

Until we have answers, doctors caring for patients must do so to the best of their ability. Practice guidelines may present a reasonable starting point, but recommendations made on a generalized basis should never be substituted for the clinical judgment of the doctor treating an individual patient.

Treatment decisions should be based on the health, financial and quality-of-life costs associated with ongoing, untreated Lyme disease, as well as on the risks associated with treatment. All medical treatments carry risks; in general, the risks of carefully managed antibiotic treatment are low.

Finally, I wanted to share a very moving “open letter” published by “Under Our Skin’s Blog” and written by Jordan Fisher Smith, the eloquent park ranger featured in UNDER OUR SKIN and the author of the acclaimed naturalist book “Nature Noir,” has written this open letter to the Infectious Diseases Society of America (IDSA), in response to the society’s decision to make no changes to their controversial 2006 IDSA Lyme Disease guidelines:

To the Infectious Diseases Society of America:

Almost twelve years ago, I was bitten by a tick at work, and contracted Lyme Disease and Babesiosis. Because of the job you’ve done at diminishing the perception of danger about tick-borne disease and pressuring doctors who treat it aggressively out of business, it took a year and a half and a nationwide search to find a doctor who would treat me.

By then I was dreadfully ill, and as a result I lost my job and my 21-year career. In my first year of antibiotic treatment I got worse. I pursued aggressive treatment for another six years, during which time I got steadily, if slowly better. During this time one of my two doctors was forced out of practice as a result of your work. Thanks to my heroic physicians, I am recovered after a nine-year battle with tick-borne disease. And I am now contributing to society, working, and raising my kids.

Your ineffectiveness and the extent of your compromise with the Insurance and HMO businesses are noted. You and your work will be forgotten eventually, as we have forgotten the names of the opponents of Copernicus. Shame on you for the suffering you are causing on the way to your eventual obscurity as prideful scientists who called it tragically wrong. The monument to your life’s work is an unchecked epidemic.

—Jordan Fisher Smith, recovered victim of tick-borne disease

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Posted on April 26th, 2010 under Chronic Lyme Disease, Discussion, Lyme News • Tags: Chronic Lyme disease, IDSA Treatment Guidelines, Immunoglobulin treatment for neurological Lyme disease. • RSS 2.0 feed • Leave a response, or trackback