0 Relapsing-remitting illness: an apropos despair.com poster

You can also get it on a coffee mug. I've added it to my wish li...

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0 Dr. David Volkman's letter to the IDSA Lyme Disease Guidelines Panel

Here is a copy of Dr. David Volkman's letter to the IDSA Lyme Disease Guidelines Panel, sent to them prior to the 2009 IDSA Guidelines review called for by A.G. Blumenthal.  If you've never read the entire thing, I highly recommend that you do - whether you are passing through, a Lyme patient, or know someone who is. (I consider this required reading for Chronic Lyme patients.) Dr. Volkman has courage to say what he thinks is right. Where are the "other Volkmans" out there? This is what we need to know, and hear from them. Comments: Regarding...

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1 Getting the persistence model acknowledged

I was going to write a review on the three-part series on Chronic Lyme Disease written by the Roanoke Times, but on reflection I thought about how much mileage the Tribune has gotten for one poorly written, poorly researched syndicated article. It went from there to various newspapers, to being mentioned in Forbes and science blog, to spin-offs in Andrew Sullivan's column and god-knows-where-else by now. Seems like lately there's almost an overwhelming wave of press about Chronic Lyme Disease that has been negative, and folks have been speculating...

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0 Dear fuzzy bunny letter

Dear fuzzy bunny, Yes, that would be you. Please know that as cute as you are and as much as I appreciate it that one of my social networking friends was wishing me well and put you on my support group wall, you just don't understand. Yes, I know you, and know the intentions behind your being posted - to cheer me up after a hard day (week? month? year?) of feeling lousy - but to be totally honest? Fail. What I really need is for there to be a safe place for my frustrations to be aired, and for some well-reasoned plan to improve the life...

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0 Reflections On Patient Responses to the Media - Tribune

A lot of patients diagnosed with Chronic Lyme Disease took exception to the Chicago Tribune “Chronic Lyme: a dubious diagnosis”  article and slammed it, as expected. At first, it was an emotional appeal in comments online - “we’re suffering here, and I know this disease is real, how can you tell anyone it isn’t?”  But over time comments began to shift to show some arguments and citations to support the existence of Chronic Lyme, which would have been a better response in the first place to authors who were stating from the get-go that...

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2 A Reminder: Your Patients' Bill of Rights

If you're a patient, you may have seen this bill of rights hanging in your doctor's office. I'm reprinting it here as a reminder to empower yourself. To ask questions. To learn about options. To ask about risks and benefits for a specific treatment. To refuse a treatment until you have researched it more, or refuse the treatment entirely from the moment it is suggested. The Association of American Physicians and Surgeons adopted a list of Patient Freedoms in 1990 [3] which was modified and adopted as a Patients' Bill of Rights in 1995 [4]: All...

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3 Chicago Tribune “Chronic Lyme: a dubious diagnosis” Post-Mortem

It took a couple weeks of writing, re-writing, and re-reading to bang out the five part response to the Chicago Tribune’s “Chronic Lyme: a dubious diagnosis” article. I said a lot about the article in terms of how a reader might want to ask questions at each step of the way, and offered some feedback on the content directly by posting some commentary on each section. The general idea was to encourage anyone reading the article to question the veracity and purpose of each bit of information in the article and consider doing their own investigation...

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3 Forum posting rules I do not understand

Hey folks, hope the past couple of days were good for you - and for those of you who are suffering from Lyme Disease, at least tolerably okay. The holidays can be tough when you aren't doing so well. I was going to post a post-mortem piece here on the Chicago Tribune article, "Chronic Lyme: a dubious diagnosis", but something else came up I wanted to mention first. And that is forum posting rules for Lyme patients. Basically, there is one aspect of them I do not understand nor know how to work with. That, in a moment... First, I understand...

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0 To you and yours...

For those of you celebrating it, I wish you a very Merry Christmas! I'm going to be offline mostly for the next two days, be back later....

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0 Lost In The Woods: Navigating the Chronic Lyme Debate

The Roanoke Times has a three part series about Chronic Lyme Disease which might interest you: http://blogs.roanoke.com/lyme/ There are three articles and a few videos on the debate over how to diagnose and treat this condition. I recommend checking out the comments, t...

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1 Chronic Lyme Disease: The real questions

Just a passing brain dump, after reading through the Chicago Tribune article on Chronic Lyme Disease and reflecting on what I'd read and learned about Chronic Lyme Disease prior to reading it: Why won't the IDSA simply explain to the public what is causing what some patients call Chronic Lyme Disease and some call Post-Lyme Syndrome? Don't they know? If they don't, and it is just speculation, then numerous hypotheses belong on the table. Why do some of the IDSA's own members use the term "Chronic Lyme Disease" in their papers and on their own...

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0 Part 5: Critique of Chicago Tribune's "Chronic Lyme Disease: a dubious diagnosis"

[ Ed. - This is part 5 of a multi-part critique of the Chicago Tribune's article, "Chronic Lyme Disease: a dubious diagnosis".] "Bernard Raxlen, the doctor who received an award at the 2008 Turn the Corner Foundation gala, has faced four disciplinary cases before the Connecticut medical board in the past decade."Structural nitpick: This statement would be better incorporated into the first page of this article, as well as the following paragraph. "The current case initially involved charges that Raxlen told a Massachusetts woman with fatal Lou...

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