ldoadmin

I wanted to post a piece of poetry that captured the spirit of the Lyme community to ring in the New Year. I found this great Jack Kerouac poem about people who create change. Then I found out it was not by Jack Kerouac, but actually was an ad for Apple computers. Still, it is a great piece that captures the essence of a community that tirelessly swims against the current trying to change the status quo. And now for that poem. . .

I was reading a book today about the power of small groups. The book is called Microtrends. It is by Mark Penn. One of the things he said stuck with me: “It only takes 1% of the people making a dedicated choice—contrary to the mainstream—to create a movement that can change the world.” What he is talking about is the increasing fragmentation of America (the world, in fact) brought about by the internet and the collapse of normal distribution channels. Very small groups of people can now connect and be effective through the internet. And, the normal channels of distribution used to control information flow have collapsed. You see this in television where there are no longer three networks to choose from but over 200 channels. That’s fragmentation.

Have you ever heard the saying “what goes around, comes around”? How about “you scratch my back, I’ll scratch yours”. The revolving door between government and industry is cause for concern. The revolving door between the CDC and the vaccine industry is even greater cause for concern. The most recent revolving door has Dr. Julie Gerberding, the first woman to head the Centers for Disease Control and Prevention, being named president of Merck’s vaccine division. Do you think she knows a thing or two about vaccines and how to get them through the process? Do you think she has connections? Dr. Gerberding comes from an infectious disease background.

Have you read the LA Times op-ed that ran on December 16 by Daniel Sarewitz and Samuel Thernstrom? The piece is called “Impure Science”. It is blazingly good. The focus is on the global warming debate and recent suggestions of bias in email exchanges from one side of that controversy that were disclosed to the press. The take-home points though apply to any area, like Lyme, where there is divided science and polemic viewpoints. While the debates are shrouded in science, the real debate is not about science, but stakeholder viewpoints. When science is subject to interpretation by different stakeholder, the question is who controls the mike?

The IDSA panel list has been revised to reflect the fact that Dr. Paul Duray has resigned from the panel. The IDSA does not post this type of information as a stand-alone announcement. Instead, they revise their prior notices. So you have to keep a close watch on their website for changes. What they did was add to his listing the following: Resigned from the Panel on October 7, 2009, due to a family illness. I am sure that everyone’s heart goes out to Dr. Duray and we wish him and his family the best during this trying time. Let’s light a candle for Dr. Duray and his family.

An important study by Dr. Stephen Barthold and Dr. Ben Luft was recently published. The title sounds a bit bleak, but don’t let the title fool you: “Ineffectiveness of Tigecycline against Persistent Borrelia burgdorferi”. This study is about how the little guy (Borrelia burgdorferi) always wins and survives despite antibiotic treatment—here tigecycline. To my mind, the findings on persistence are much more important than the finding that tigecycline doesn’t do the job. When one antibiotic doesn’t work, you try another, and if that one doesn’t work, well, you try another or you kick it up a notch and start trying combination antibiotics, like they do with tuberculosis. You don’t fold up the tent and go home because active infection requires antibiotic treatment. And, you won’t ever find out which antibiotic or combinations of antibiotic work, until you try them. So, roll up your sleeves, we have some work to do here.

Someone I know. OK, a young woman whose father called me and who then met me at a support group. OK, a father who called me because my husband played tennis with a co-worker of his. Well, you know how small this world is when you meet someone else with a “rare” (shrug, smile, wink) condition like Lyme. Anyway, this person (drum roll) –Silver Feldman– who missed a large chunk of high school because of Lyme and who turned 21 this last month took a graphic design class. Guess what her topic was? Don't you just love it when people give back to the community?

The parallels between breast cancer and Lyme disease are not obvious, are they? I was surprised by them myself. Breast cancer patients have two treatment options (sound familiar?). Mastectomy removes the entire breast, while the newer procedure, a lumpectomy removes only the tumor and immediately surrounding tissue. Consider this: lumpectomies used to be controversial and were opposed by an entrenched medical establishment. It’s hard to imagine, isn’t it? Even harder to imagine is that women had to pass legislation in 20 states to obtain the right to choose between lumpectomy and a radical mastectomy. Physicians were afraid to perform lumpectomies for fear of losing their license. We have passed legislation in 3 states so far protecting physicians who treat Lyme in defiance of the IDSA guidelines from medical board action. But, wait there's more..