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 that it's some plot by the IDSA and the University of Chicago or something.

I don't know. I really can't prove that. It could just be that the original authors of the Chicago Tribune screed just Googled "medical controversy" or something and Chronic Lyme Disease popped up and they said, "Ooooooh, let's try writing about that", with some girlish glee. I somehow find that more probable than some great newspaper conspiracy.

Anyway, I've been thinking about how it seems like the dominant voice in the media does seem to echo support for the IDSA approach, in an almost Borg-like fashion, and wonder if there is anyone the Chronic Lyme patient community could go to in order to get the word out about the persistence model of Borrelial infection and who their allies can be in educating the public and the media.

Relying on patient anecdotes and patient advocacy groups doesn't seem to be enough here or the right approach, in my opinion. The patient experience is what has gotten slammed, much as I and many others have suffered with it, through it - and some of us - mercifully past it. I keep thinking that getting three ducks lined up in a row are really what's going to help here next: science, medical professionals, and progressive media outlets.

On the first, I've been reflecting back on those IDSA Guideline reviews in July 2009... Remembered that two IDSA members who were originally on the panel ended up not being on them. Remember who? Right - Dr. Sam Donta and Dr. David Volkman.

Dr. Donta is a treating physician now who used to be an IDSA member, and so far as I can tell, now isn't. Dr. Volkman primarily does - or at least did - research on Borrelia, and did some research along with the folks of which so many Chronic Lyme patients seem to use their names in place of swear words... It's kinda like Steere = Voldemort, if you were going to draw from Harry Potter: He Who Shall Not Be Named.

Anyway, Dr. Donta was off the panel, when he could have been a useful voice as he supports the persistence model. Dr. Volkman, from what I could gather, is semi-retired by now or maybe totally retired, and got upset at other IDSA members for falsely citing and quoting his research publications and wrote a statement supporting the persistence model.

So there are two former IDSA members who were off the panel who support a persistence model. And as I quoted yesterday, Dr. Willy Burgdorfer - formerly of the National Institute of Health - also has stated he believes in a persistence model.

Those are three specialists I can think of off the top of my head who were with the IDSA or worked with members.

Okay, so that's not a lot.

But I wonder about this: There are 8,600 members of the IDSA at last count. Of that population - of the portion which is not comprised of the original Lyme Guidelines writers we're talking about here - how many of them believe that persistence in humans is at least possible? Of those, how many of them not only believe but know it is possible? How many of them haven't really paid much attention and focus their efforts elsewhere, too, given there are so many infectious diseases to deal with which get more attention and funding?

I wonder how many actual IDSA members from outside the guidelines panels exist who think persistence is possible -  but they are either quietly biding their time now or waiting for retirement when they'll be more willing to risk their opinions - because by then it won't be professional suicide?

Is anyone else out there who is a member of the IDSA who is retiring soon who is willing to look at the evidence and help push for more research on Borrelia and bring all the persistence data to light for the public and media?

Had Dr. Burgdorfer been interviewed by Good Morning America instead of Under Our Skin, what kind of impact would that have had, had he said the same things then?

Another thing I wonder about is how many microbiologists who are in graduate or doctoral programs have the opportunity to learn about Borrelia and study it in vivo and in vitro... as well as those who have already done research which has proven persistence at the senior academic level? Would the people who have written those oft-cited research papers on persistence the Lyme community keeps referring to actually be allies who could educate the public and media on what is suspected, known, and not known about Borrelia? About coinfections? About the impact they have on mammals when both are present? On humans? There is plenty of research out there already supporting a persistence model - it just needs more exposure and discussion.

Medical professionals... How many internists and primary care physicians are willing to treat their patients with extended courses of antibiotics to treat Lyme Disease? I know of one person whose primary care physician prescribed them four months of doxycycline treatment right after being bit by a tick and discussing their symptoms - including the rash. Granted, not everyone has the rash - but this person got treated early on while waiting for serology (which later turned out to be positive). Surely there are other doctors out there who do this who are using their own clinical judgment?

And nurses? I believe there is an association of nurses who formed a Lyme education group in Oregon because the response to Lyme patients in that state has been lacking... where is it? Ah yes, the Mail Tribune posted about nurses forming a Lyme education group in Rogue Valley, Southern Oregon.

Since the press has been slamming a handful of LLMDs lately and alternative treatments, give them what they will listen to more: mainstream medicine. Through this they will learn that not everyone who is not an LLMD thinks the 2006 guidelines are meant to be followed at all times.

Veterinarians... There's another data pool. If more of them would come forward to talk about their clinical experience with treating pets with Lyme and other coinfections, and talk about how widespread the problem is in their patient population - then maybe we'd have a better picture for epidemiology. After all, the same ticks that bite cats and dogs are the same ones that can bite us.

So there are the professionals in science and in medicine I would be approaching to ally with at this point. I don't think patient groups really can do it on their own, even with bills in every state to protect LLMDs. Having those bills hasn't led more primary care physicians to treat Lyme Disease longer, nor  led to more insurance companies willing to cover care.  But I think a groundswell of mainstream acceptability and research to back it will change the situation, and this requires moving away from identification with the fringes - both real, perceived, and media-sensationalized.

In terms of the media, this requires precision in identifying your audience and working with publications who can educate the public from different approaches while still not losing the intended message: It's about proven science and medical need.

The argument that can be made for the patient in the media is this:

This patient population needs treatment and is not getting it, insurance is denying payment for their treatment and science proves it is necessary; to not treat them would be unconscionable and like letting people die from tuberculosis, syphilis, and HIV just because insurance won't pay for it.

From there, I would have some former IDSA members speak out about it, and include Dr. Burgdorfer, a slew of microbiologists and medical students, mainstream doctors who have treated Lyme Disease anywhere from a bit longer than is standard to much longer, nurses, medical professionals who have come down with Lyme and coinfections themselves who have made the decision to treat themselves, and of course, some veterinarians.

I'd be working towards building a relationship with the best of the progressive press - for example, Utne Reader has posted a short piece about Lyme Disease which was informative and not negative. I'd be looking at popular science magazines, general health columns and magazines, newspaper science sections, watchdog and consumer advocacy columns, and books and magazines on pet care. By extension, well-traveled web sites with similar aims and content could be approached for queries.

This is just brainstorming in the moment. I don't know if I'm covering ground that's already been covered in saying all this or not, as there is so much written that I can never read it all. But I had to write something about it before it completely left my brain.

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