Gathering Pearls

Hey everyone! Welcome to my new (first ever) blog!

During the two years I've been treating my chronic lyme, I've been increasingly impressed with the lyme community. We have a very complicated, not very well understood illness. The medical community is wrapped up in controversy, and there are days when it feels like more attention is going to politics than to finding cures. Because of that controversy, patients can experience denial of health coverage (even those who have "good" insurance) doctors who won't even see them with this diagnosis, and talented, dedicated doctors being "disciplined" for practices that are considered, by some, too controversial.

Hello?!? It's ALL controversial! (OK, maybe not lemon water; but pretty much everything else, as far as I can tell, is.)

It would be hard enough if we just had one of the most complex illnesses known... but you add on top of it all the other financial and political stuff, and (in the words of a fellow lyme blogger) everyone who has this illness is an automatic badass. *

 
I love this community.

Lyme patient voices aren't getting nearly as much play as the experts (the best of whom readily admit that there aren't any experts on this illness yet, and we are all experimenting our way to health...) And why not? The juiciest learning I've had has come from fellow patients. We need lyme patient wisdom, and we need it pulled together by someone who has the patients best interest at heart, outside of the politics and the profit motive and grinding medical philosophy axes until we're all dead. Being a patient, and as motivated by enlightened self-interest as the next person, I figured I qualified. And being more functional than a lot of fellow patients (at least for now) I felt able to do it.

So I decided take things into my own palsied hands and do a survey, which ran from June 17 to July 1, 2012. This blog is to share the results, the implications of those results (at least as I see them) and give us a place to talk about it.


What kind of study was this, anyway?

There are all different kinds of research for gathering information. Lab science tries to eliminate  complexifying factors and study one thing at a time. This is incredibly valuable! Breakthroughs can happen with real clarity from lab experiments, and we desperately need more of them. All you lyme scientists out there, know you have our gratitude for your work.

Field studies (such as testing out a new protocol with patients) are different in that it is impossible to eliminate all variables, but the information you get is, in some ways, more "real world"--what is true in a lab may or may not have applicability once you add real life into the equation. It's not so important for a patient what happens in a petri dish; what matters more is what happens in our actual bodies. Put another way: Killing spirochytes in a petri dish is great! Killing them in my body is infinitely better. So field studies are also really valuable, but they are messier.

And then there are studies in the more "soft" disciplines realm of psychology and sociology. They are messier still. And they also have a place for learning about a medical topic. This is because things like attitude, philosophy and hope matter, and petri dishes don't tell you squat about those. Some of these psychological and social factors affect field studies, and are thus useful as a companion to medical research being done in the field. (Dealing with actual humans is messy. Meh... life is messy.)

So my thoughts are this: I want all of these kinds of studies to be happening, and it takes a lot of time to do them right. Meanwhile, we are suffering; some of us are dying. We need something sooner than the timeline it will take to do the 10,000 studies that it would be a good idea to do in labs, fields and psychological or sociological tests. And I want to know about things that no one (that I'm aware of; at least in the US) is really studying: things like rates of misdiagnosis, rife machines, medical philosophy, stress and optimism. And I want to know what patients say when they aren't under a professional's microscope but are really just talking to peers.


So think of studies as being a big batch of apples, oranges, bananas and kiwis... they are all valuable and a monodiet isn't nearly as good for you as fruit salad. They are each a different batch of data points. And none of them is perfect.

You can think of what I've done is a kind of freelance, not very controlled peer survey. Take it with the same grains of salt and the level of validity you'd take sitting around the table late at night when the insomnia strikes and chatting with other friends who also have lyme; don't take it as a particularly scientific study. I asked 50 questions that I was curious about, figuring that my curiosity might be similar to others. As one fellow patient, Jennifer Middleton, commented after taking it, "(I) was asked questions that were closer to my own concerns and symptoms than I have by my own Dr... It was not impersonal but really geared to our real life." That was the point! Hooray!

The survey garnered responses from 450 people with chronic lyme in just two weeks.** I'd love to see a similar study done on a much larger scale and with more careful methodologies. Still, I'm pleased to have sampled the tip of the ice burg. (450 of you really worked up the energy to answer a bunch of questions for me?!? How cool is that?)

Asking questions is the heart of how lyme patients learn to get well.  However, how often do we get a chance to ask hundreds of people the same questions? (And wouldn't our poor lyme brains fry trying to make sense of them all if we did have all those people in the same room? I'm tellin' ya, it was way better letting survey monkey do most of the math!) Asking each other questions is really valuable, and yet we run the risk of only getting a limited perspective when we ask a friend, or the 20 who happen to be awake and articulate when we post our thing online, or the 12 that showed up for our support group meeting that night... you know what I mean.

It seems far better to gather together a lot of perspectives. Rather than take a chance that the person I happened to ask will have a pearl of wisdom, I'm seeking patterns, a whole damn necklace of pearls as it were.




Onward on our own

Thanks to a dozen factors, lyme patients have been put in the position of often having to lead the way in areas that we aren't professionally trained to do. So here we are again, and so be it. In this blog, I'll muddle through and share what I've learned, give you the stats as I've gathered them, and hope it is of benefit to many other patients out there. I'll talk treatment and philosophy, money and politics, stress and support. And hopefully you will talk back, and we'll create another little pocket of spirochyte-addled, supportive community right here.

Welcome to Lyme Voices.

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Thanks to Marsha Marcinko, Stacey Dana Price, Dave Mack and Tim Hart (and anyone else I haven't tuned into) who helped get the word out and make this survey a success, and my deep gratitude to everyone who filled out the survey (especially those who had to overcome technical strangeness and lyme-rage inducing frustration to get it to work). Thanks also to Cob Carleton for survey Survey Monkey support.

* You can get this sweet shirt here.

**The number of responses to any one question varied, as I didn't require an an answer to any of them. Also, a handful more folks started taking it, but then answered "I don't think I have this." I'm not counting them in this number.