Epidemic definition: affecting or tending to affect an atypically large
number of individuals within a population, community, or region at the
same time.
In today's blog, we'll circle back around to the first two questions on our survey for one more quick pass, talking more about the misdiagnoses that plague us... and how "plague" might indeed be an appropriate word for the situation.
+++++
Of the people responding to the survey 87% have a chronic lyme or Multiple Chronic Infectious Disease Syndrome* (MCIDS) diagnosis. The other 13% say that they don't have this formal diagnosis, but strongly suspect they have it.
One of the strange and mortifying things about this disease is how many people are essentially forced into self-diagnosing. Many medical practitioners are still holding the perspective that lyme can't become chronic (that it either is handled easily by a single run with a single antibiotic, or-- worse in the myth department-- it simply goes away on its own). In this environment, people who have little tolerance for being told that it is all in their heads frequently go looking for a more satisfying answer.
I'm all in favor of folks being independent in their thinking about health and healing (and in fact, once penned a pieced called, "I am my own primary health care provider" which will be a blog here are some point) but these numbers point to something much more ominous: many people are being abandoned by the medical system we all rely on, and left to their own devices in an area where we could really use some help. This isn't the common cold: this is an illness frequently cited to be the most complicated one currently known, and it can kill us, slowly and painfully.
The people represented in the "strongly suspect" category can be seen as place holders for all those among us who can't get to a knowledgeable doctor, don't have the money or insurance coverage to see a specialist, or have an already high mistrust level of the medical establishment and are essentially on their own or operating with peer support.
Unfortunately, finding a doctor may not be much of an improvement, as we saw in the blog from July 5th.
The danger of misdiagnosis is that lyme gets harder to treat the longer we have it. Years can go by whacking at the beast with the wrong diagnosis while the bugs in our blood just get more and more established. And the longer they hang out in your system, the more chances they have to settle in to tissues--they literally become entrenched, burrowing their little spiral bodies into just about any organ. (According to Stephen Buhner in his book Healing Lyme, they favor collagenous tissues, which include joints, the brain and heart, and skin, and--just to add to the creep out factor-- they actually have an easier time moving through these tissues than blood. Don't think about that too much.)
And if it is true that many of these other illnesses are actually undiagnosed lyme, the growing concerns about a lyme epidemic may be spot on. Just for giggles, here's the stats on the numbers of just five illnesses named in the misdiagnosis question on our survey, and just within the US:
Fibromyalgia: an estimated 3-8 million cases
Chronic Fatigue Syndrome: 800,000 cases**
Multiple Sclerosis: 400,000 cases
ALS: 30,000 at a time (most ALS patients die within 2 years of diagnosis, so this one is more of a rolling statistic)
Alzheimer's: up to 5 million
That's a heck of a lot of people who could probably use a really good lyme disease test. (Oh, wait... we don't have one of those, do we? But that's a topic for another blog.) In fact, even taking the low end of the fibro numbers, that is 9,230,000 people, or nearly 3% of the US population. (Can you imagine the kind of havoc it would create to have 1 in 33 people walking around with lyme rage? Or worse, not being able to walk around with it?) Would those numbers qualify as an epidemic?
This level of misdiagnosis of lyme cases goes a long way to explaining the discrepancy between the CDC's official diagnosis number (22,500 new cases in 2010, and another 7,500 they are willing to call "probable")* and the estimates that the real number is probably much higher than that: in the ballpark of 250,000-300,000 cases per year.
It is absolutely essential that we figure out how many of these other diseases might be manifestations of lyme.
++++
I want to close with a personal anecdote. There have been any number of painful things for me personally as I've learned more about lyme, but none harder than my changing perspective on the death of Fred Lanphear. Fred was one of my favorite elders in the world. About the same time my own health was doing the slow slide downward, Fred was dying of ALS. And right around the time I was diagnosed and started my own steep learning curve abut lyme, he died.
I'm not someone who does regret much, but part of me aches every time I think that it is possible, if we'd known more and the politics of this disease weren't so ugly, that Fred might have gotten a different diagnosis and still be with us. And maybe, if I'd learned more sooner, I could have played a role in that.
++++
Transparency: my own answers to these questions are that I do have an MCIDS diagnosis. Prior to this diagnosis, I was also tossed into the fibromyalgia bin.
*This is also being called MSIDS, Multi-Systemic Infective Disease Syndrome. Fortunately for those who are aurally oriented, they are pronounced the same way. Unfortunately for us readers, we now have 2 acronyms floating around for the same thing. Bleck.
** As an interesting side note, check out the two "myths" about CFS at the bottom of the page. Sound familiar?
*** It is also partly explained by a disjunct between the CDC's purpose and what our doctors need to be paying attention to: "The CDCP criteria was developed only for surveillance; it was never meant for diagnosis," according to Dr. Ray Jones. "Lyme is a clinical diagnosis.The test evidence may be used to support a clinical diagnosis, but it doesn't prove one has Lyme. About 50 percent of patients I've seen have been seronegative for Lyme but meet all the clinical criteria." Quoted from: Goldberg, B. & Trivieri, Jr., L. Chronic Fatigue, Fibromyalgia & LymeDisease, 2nd Edition. (Berkeley, California: Celestial Arts, 2004), P. 389
Showing posts with label lyme patient survey. Show all posts
Showing posts with label lyme patient survey. Show all posts
Monday, July 9, 2012
Sunday, July 1, 2012
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.
++++++
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.
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.
++++++
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.
Saturday, June 23, 2012
Pre-launch post: Take the patient survey!
Welcome to Lyme Voices!
The blog will be officially launched the week of July 2, once the survey is closed and I can start to share results. If you have not yet seen the survey and are a chronic lyme patient (or have been cured from chronic lyme) please take some time to fill it out (it takes 20-45 minutes). If you know someone in these categories, please share this link with them. Our goal is to have 500-1,000 patient responses (and I'll update the tag line once we have the final number).
https://www.surveymonkey.com/s/WKC87PT
All results will be shared through this blog. They won't go to an insurance company, group of doctors or any other parties (unless of course they read the blog). My intention is that this is by a patient and for patients. If others derive benefit from it, that's a bonus.
And come back the week of July 2 to start hearing from lyme patients all over about their real experiences with the illness. I look forward to sharing with you!
The blog will be officially launched the week of July 2, once the survey is closed and I can start to share results. If you have not yet seen the survey and are a chronic lyme patient (or have been cured from chronic lyme) please take some time to fill it out (it takes 20-45 minutes). If you know someone in these categories, please share this link with them. Our goal is to have 500-1,000 patient responses (and I'll update the tag line once we have the final number).
https://www.surveymonkey.com/s/WKC87PT
All results will be shared through this blog. They won't go to an insurance company, group of doctors or any other parties (unless of course they read the blog). My intention is that this is by a patient and for patients. If others derive benefit from it, that's a bonus.
And come back the week of July 2 to start hearing from lyme patients all over about their real experiences with the illness. I look forward to sharing with you!
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