In the Beginning...

Welcome back, everyone! Thanks for tolerating a nice long break for me. My own symptoms were flaring, my community was doing a 15th anniversary reunion, and I just needing some time off.

Over the next couple months, I'm looking forward to completing the first round of Lyme Voices survey blogging, and am brewing plans for future work. Thanks for hanging in there and being part of the adventure with me.

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Now, where were we...

...ah, yes. We've arrived at the part of the survey that deals with the early days of our infections. It seems that most of us had no idea what we were in for in those early days. Some of us don't even know when we got infected, since there were no dramatic early symptoms... no rash, or flu-like illness, or arthritis, the kinds of things we are told to expect.

Here's what the survey said. 58.5% of us don't remember getting bitten by a tick, and only 20.7% had a classic bullseye rash.

Of course, this is a survey of folks with chronic lyme. It seems far more likely that lyme will get caught and treated in the early days if there is a big fat bullseye to clue us in to what we are dealing with. While it is disturbing that almost 21% of us had a bullseye and still ended up with the chronic form, I'm thinking this isn't so much because bullseyes don't show up in 79% of all cases but that you are much more likely to end up with a chronic illness if you aren't "lucky" enough to get this no-brainer symptom.

For the 41.5% of us who remember a tick bite around the time we first got sick, it seems quite likely that that was how we got lyme. But what about the rest? I asked folks to speculate on how they think they got it (knowing that it is probably impossible to say for sure where you got it unless the tick is found and tested and your blood cultures the same strain that they found in the tick.)

And here's what survey respondents said:

I find it interesting that only about 3/4 of us feel sure we got this from a tick bite, as the story that "people get lyme from ticks. period" is still so prominent.

The lyme spirochyte has been found in all bodily fluids (lending credence to the idea that it is both sexually transmittable, and transmittable through breast milk) and apparently can be transmitted by various insects, not just ticks. There have also been babies born with lyme already in their systems.

And of course, lyme is in our blood. The Red Cross won't accept blood from people with lyme. Here's what their guidelines say:  

"Accept persons with Lyme disease if they were treated, the disease resolved and at least 1 year has passed. Those with CHRONIC Lyme disease are not eligible to donate blood." 

Whether or not we think it is wise to accept blood from people once treated that have been "resolved" for only a year, it is good to note that they take lyme seriously enough to include it in their proscribed conditions list. And it does raise the possibility that some of our mystery cases may have come from the nation's blood banks. (Now that opens a whole can of scary thought worms, doesn't it?)

In my mind, all of this provides plenty of reasons for doctors to not eliminate lyme from the possible diagnoses they consider simply because you don't live in an area where lyme is common.

Even granting for a moment that there is something sensible about the idea that lyme "isn't" in some places (when even the CDC charts show it clearly in every state in the continental US) I don't think you can really eliminate lyme as a possibility without taking into account if the person has:

• ever had a blood transfusion, 
• might have gotten it in the womb or from nursing
• ever lived in or visited a place where lyme is common
• ever had sex with someone who ever lived or visited a place where lyme is common

Only considering known cases from their immediate geographical area ignores a whole lot of other possible routes to infection. (Besides, you might recall from earlier blogs my thoughts about why else this thinking is wonky and circular.)

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So how did we end up having the chronic form of this disease? This next question may shed some light on it. The answer looks pretty clear form this: most of us simply weren't treated in the early stages. Only about 25% of us got some kind of treatment when our symptoms first emerged, and I'd be very surprised if many of us got more than a couple weeks of antibiotics at that time.

I find this second category to be particularly interesting. Almost 1/3 of us got sick very gradually. This thing just sneaks up on so many of us, and then we look back from the vantage point of having a diagnosis that makes sense, and you can see the patterns... but five (or ten or however many) years earlier, we probably would have said that nothing major was amiss.

I'm imagining (because this is the case for me) that some of us who got antibiotics right away then had a period of being relatively symptom free, and then the symptoms re-emerged very gradually. I spent about 5 years not realizing I was getting progressively more sick before I really tuned in to something major being "off".

And in my case, the time delay between the initial bite and infection (in 1997) plus the message that I might have "lingering symptoms that don't mean you have an ongoing infection" made it harder for me to connect the dots when symptoms started to come back out in 2005.

So a chunk of people who did have treatment initially could probably also have answered in one of those top two categories for our re-emerging illnesses.

The bottom line as I see it here is that if we are going to prevent chronic lyme, it isn't so much about tucking our socks into our pants when we go outside; it is more about the medical profession learning to pick up on subtler cues and recognize patterns over time, and perhaps the general public having their awareness raised to think about lyme when things start to feel off.

We need different medical training, and more awareness about those early signs. If this doesn't happen, then many, many more people are going to be condemned to the slow slide into chronic illness.

Damage Reports

My first really odd symptom of my chronic lyme was that I'd be walking down the street and suddenly my knees would just give out and I'd be on the sidewalk in a heap. Once it happened while I was crossing the street, and I can still remember the feeling of dread and horror as I was going down... not here!

Every time I squat down or stand up from a squat, my knees crackle. I think they are very, very sad.

Lyme and Co do a lot of strange things to our bodies. As we begin to recover, one of the hard things to discern is which things are lyme induced damage that will simply be with us for the rest of our lives (or until heart or knee surgery-- which is probably in my future-- or some other corrective measure is taken) and what is simply being experienced because the bugs are still partying hard in our systems.

One of the real problems with the lyme debate being so polarized is that there is a batch of stuff that could legitimately be called a kind of "post lyme" syndrome, but that phrase has gotten used already to de-legitimize the existence of chronic lyme.

Post lyme syndrome really ought to be about living with organ damage. One way to tell the difference is that brain and heart damage shouldn't cycle in the way that our active infection symptoms do as the bugs bloom and die out each month.

Some types of damage are obvious with the right assessments: your brain has spots on an MRI, your heart doesn't pump normally any more, your joints sound like mine do, your gall bladder has already been removed. Today we look at the damage reports.

Remember that lyme is happiest invading collagenous tissues, which include our top three winners in the damage assessment count: joints, brain and heart. And notice how prevalent our organ damage is: only 36.6% of us say that we have no damage or we aren't sure. That means 63.4% of us have some damage.

It probably comes as no shock to those dealing with lyme, that the damage gets worse the longer we have it. Here's two charts that break the above data down. The first one is what I'm calling "mid-length" infections: people who have had lyme for 1-5 years. (Thus, it eliminates those folks who find it quickly and have an easier time getting it out of their systems: the more acute cases.) The second is for people who have had it for at least a decade.

One of the things that really sparked my curiosity is how dramatic the difference is between mid-length and long term infections for the gall bladder. 4% report gall bladder damage in the 1-2 year range, and 5.2% for 2-5 year sufferers. Here it is the least affected of the organs surveyed about. But look at the jump: 21.1% in the 10-20 year category and 24.7% for folks who have had lyme for over 2 decades.

That is 6X as high from the shortest term to the longest term infections in our survey. I'm not sure what to make of this: just that lyme doesn't target the gall bladder directly, so it is a longer, slower thing? Whereas we have much higher rates early of joint, brain and heart damage, which lyme does attack very directly? I'm curious what medical professionals think of this one.

The liver numbers don't rise nearly so much. So that also makes me wonder... if your liver is going to suffer, does that mean most of us will see that early or not at all? More research needed on that for sure! If we knew that livers melted down quickly if at all, wouldn't that be helpful info? It makes me wish we had a much larger sample size, and could track the same group of patients over 10 years.

Still, with most of these, there is a gradual increase in the amount of organ damage we suffer from. When we look at the three systems hardest hit by lyme, here's a chart that lays it out in an easy-to-print-and-take-to-your-doctor form:

This is one of the best reasons why we want lyme diagnosed and treated quickly. (And please note, if it take 17 doctors to get it diagnosed, that isn't "quick".)

Do you have any idea how much money we spend in the US every year on medical treatments for people with joint, brain and heart damage? I was curious myself, and so I went looking for some stats.

A quick search puts the cost of knee replacement at $45,000-70,000. (Note the wording on the link "for patients without insurance". Is anyone else deeply bugged by the fact that insurance companies pay less for the same procedure than you or I would? What a country!)

When we get into talking about annual costs of knee and hip replacements, they measure those overall US healthcare costs in the billion $$s. This is huge business! (And yes, I do understand that knees and hips wear out from things other than lyme... it is just a little mind blowing to me how much we spend on this stuff.)

My point is, organ damage is expensive. And it is also very debilitating... brain and joint damage are hugely impactful on our quality of life, and while joints can often be fixed, brain damage a much harder thing to deal with. In fact, with the exception of the gall bladder and half your kidneys, you pretty much need these organs working properly.



Co-infections

Here's the numbers when we add in the complexity of our two most common coinfections, babs and bart.

Almost everything goes up... except joint damage is almost identical, and Bart doesn't appear to affect the heart very much. Unfortunately, I couldn't figure out how to get results that did not also include the bart and babs folks in the "all" category, so I'm guessing the real numbers would actually be a bit more distinct than this.

The biggest jump here is with babs affecting the brain (and those who suffer from babs can attest to this, I'm sure!) There is a 7% jump in brain damage in this category. The second largest is bart adding 4% to the liver damage category.

I also found myself wondering if the jumps we see may simply be that both coinfections weaken our systems and create a distraction from getting rid of the lyme long enough that the lyme itself has more time to do damage. I don't feel nearly as versed in my babs and bart understanding as I do with lyme; do they even directly cause organ damage at all? Please weigh in if you are a medical professional with a good grasp on these two pathogens.


The Complications of Medication

How much of this is due to meds and how much is infections, is hard to say. Lyme tends to target collagenous tissues, which include joints, heart and brain. They also produce toxins, and the liver and kidneys are there to help cleanse the body.

But a lot of our medications are also really hard on the body, as is the sudden flood of neurotoxins we experience as herxing. Antibiotics, for instance, are the biggest offender for drug induced liver damage (and we do love our antibiotics in the lyme community).

Some of us make choices to not go the antibiotic route, in spite of the fact that herbal remedies are often slower than antibiotics to get the job done,  because of love of our livers. And if it does turn out that rifing and infrared saunas prove to be effective treatment options, care of our internal organs could sway a lot of people toward their use as options with minimal to no side effects.

We really do need to find more effective and gentler on the body cures for chronic lyme and its buddies. And we need to identify lyme much more quickly if we want to reduce our chances for major damage in the long run.

The Infectious Disease Society of America can keep twiddling their thumbs denying chronic lyme's existence, but meanwhile our bodies are suffering permanent damage; the rest of us need to get on with finding and healing lyme as quickly as possible.

It's Hard to Stay Positive: Lyme Tests

Remember how I was encouraging us to cut the CDC some slack? Well today, I'm going to reel some of it back in.

We're looking now at question #7 about testing negatives and positives. Lot's of folks in the lyme community feel frustrated by the lack of good testing. On the other hand, the phrase "false positives" seems to come up whenever we talk lab results, and I think it is worth taking a little time to talk about that.

Here's what the CDC says about false positives: "If a patient has not been in an area where Lyme disease is common or their symptoms are atypical, positive results are more likely (emphasis mine) to be false positives. Similarly, if a patient is tested numerous times and only rarely tests positive, it is likely that the positive result is a false positive."  

More likely. Not "potentially" or "under some rare circumstances possibly" nor a general statement on being a careful medical practitioner being wise. No, they seem to actually be saying, "Feel free to blow it off if you don't think it could be right."

Just when I was starting to like them more.

There are multiple things in these two statements that are highly questionable. I am certainly willing to grant that it is easier to get lyme in some places than others. However, in this case, the idea that it can't happen in certain areas has created a false impression that it really isn't happening in those areas. (And thus, a low diagnosis rate.)

If doctors in supposedly low risk states won't diagnose the same presentation that a doctor in a high risk state will, then we have biases running our diagnostic standards rather than sensibility. This is a circular thing: if you don't believe it can happen here, then by not diagnosing it, you reinforce the statistics that say it can't happen here.

(Now it is also true that it is incredibly difficult for a conscientious doctor to keep up with all the emerging new information out there, and it is understandable that not everyone recognizes the symptoms profile with equal skill. More experience diagnosing any illness will lead to better skill at it in the long run.)

Here's a few different maps of risk level in different states. Let's start with the CDC's own map, Reported Lyme Disease Cases by State, 2000-2010

Remember that the real number is probably 10-13X the number of CDC confirmed cases, and those numbers are going up each year, not leveling off or dropping. The next map is from 2000, from the American Lyme Disease Foundation. The importance of this second map is how geographically spread out cases were 12 years ago.

Remember that birds, reptiles and mammals (including people) don't stay in one place. The more mobile we are, the more we contribute to things spreading.

And finally, here's a map describing distribution among man's best friend, with numbers from 2007. (Anyone else notice that dogs seem to being studied more than people? I love dogs... and yet something about this bugs.) The important thing here is that the bug that causes lyme in dogs is the same one that causes lyme in people; if dogs are getting diagnosed at higher rates in some of these states, why aren't humans?

When I look at these maps, the big take away I get (no matter what the source, or which big mammal we are talking about) is that lyme is all over the continental US. While one map each show nothing in Mississippi or the Upper Peninsula of Michigan, there isn't a region without lyme anywhere on here. (And gosh, sorry, Wisconsin. You're really taking the hit for us midwesterners, aren't you?)

So when the CDC says that a test might be considered a false positive because lyme isn't common in that area, I'd like to know their definition of common. I'd also like to know why they think it is OK to ignore those "uncommon" cases; just because everyone in the neighborhood doesn't have it doesn't mean you don't have it, ya know? Do we ignore rare cancers because they are rare, even when all the other evidence points to them?

The second thing in their statement is about "atypical symptoms". We'll talk more about this soon, but the bottom line is, there is no universal symptom for lyme, and people fit pretty different profiles. Some are mainly neurological, some mainly "fibromyalgia" type symptoms (tired and achy) some have lost their sex drives and/or gone into early perimenopause.

Which profile should we consider to be the "typical" one? (And please don't tell me it's that rash. See two blogs ago.)

Finally, the CDC doesn't like inconsistent test results. (Neither do I actually; where we differ is on what to do with them.) And that brings us to today's survey question about testing. I asked folks to share with us a quick look at their testing history and here's how it shakes out:

So here we have a population of people who have lyme. For 37%, the testing worked on the first go. However, a larger number of people got a negative before we got a positive. Some of this has to do with what type of testing we did. (In my case, I tested negative, crossed lyme off my potential illnesses list and muddled through for months before a friend hipped me to the fact that there is different testing out there and got someone to send my blood to Igenex, which yielded a positive. Thank you Mary Lou Singleton!)

However, a lot of it also has to do with what kind of shape your immune system is in. And according to Dr. James Schaller, bartonella in particular is very good at depressing the immune system in such a way that it causes lyme tests to be negative. And a lot of us have bart (as it is unaffectionately known to those of us who are most intimate with it.) Plus, tests are often reading your immune response in some way, and the sicker you are, the less likely you are to have a predictable, "normal" immune response.

Inconsistent testing can thus have as much to do with what is ascendant in your system at the time you got tested as what is actually going on in the tick soup of our bodies, or it can have more to do with the general state of your immune system, than it does whether or not you actually have lyme.

And there are any number of other factors than can depress the immune system (including a long term undetected lyme infection itself. See the blog from July 3 for a sense of what our lag times between becoming infected and being diagnosed can be.)

Further, if you have just gotten infected, you might not show up as a positive either because your immune system is not yet responding. In some ways, these are the most tragic false negatives to ignore, because lyme is much easier to deal with if caught within those first couple weeks, when it is not left to linger and dig in.

Thus, the very common occurrence of negatives tests... and my reasons why I think the CDC's apparent preference to discount the positive test as a fluke is probably exactly the opposite of what we need doctors to be listening to. Notice nothing in the CDC's statement gives us any reason to think that the pathogens were incorrectly identified.

Now that would be a real reason to consider a test to be a false positive, but it isn't what they are arguing. But in light of a clinical presentation consistent with lyme symptoms, any positive test (save one from a truly incompetent lab... which you shouldn't probably be using anyway) should be seen as building the case for lyme.

Somewhere in this diagnostic equation mess, there ought to be some space for trusting ourselves. When we know something is wrong, and the explanations we are being given don't make sense to us and when science (and the agencies meant to serve it) fails us, we need to trust our own bodies and what we know for ourselves.

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Bonus for those who are joining in late in their reading of my blog: a link from the Canadian Lyme Disease Foundation provides a host of reasons why someone with lyme might test negative.

Lyme: a Hidden Epidemic?

 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.
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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. 

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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.

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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, 2^nd Edition. (Berkeley, California: Celestial Arts, 2004), P. 389

Why Tests and Q #6 Should Both Be Served with Salt

Note: I am going to skip blogging about question #5 (how long people have been in treatment) for now. I'll be using it mainly as a cross-reference for other questions, and might circle back around to it later as its own topic. Onward!

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How we actually get diagnosed is a very important topic for the lyme community. Understanding the most effective ways to diagnose lyme can help doctors make better decisions in the moment of how to approach a suspicion of lyme, and these better decisions can ultimately lead to better outcomes.

Unfortunately, I think I blew this one in the set up. (This is why I'm desperately seeking someone with social research experience to help next time--to stop me from doing goofy stuff that makes the data worthless... Are you my sociologist?)

Here's the answers as they came through on the survey:

 Here's the problems with how I set this up:

1) I made an assumption that, because the phrase "CDC positive" gets bantered around a lot, people would understand what I was asking and be able to answer this question appropriately (or could get the information from the link I provided). Of course, this was silly, because I had to go looking and wracking my own brains to try to get it, so why would I think other folks had a better handle on it? This confusion became clear when reading some of the comments, as well as the fact that a few people checked multiple boxes on the three categories of positives. It also just doesn't seem that likely that we have this many CDC positives given our sample size (unless of course the CDC numbers are going to be a lot higher this year).

2) I realized afterward that no one is entirely without a clinical part to the diagnosis, and that people would probably relate to this answer in very different ways. What I mean by that is that no one goes to the doctor feeling perfect and, just for the heck of it, asks to have a lyme test run... there's always a clinical aspect. Someone may not have said that's how they were diagnosed unless it was the only choice on my list that fit, but then again, others checked multiple things, including clinical. We tend to think of testing as a more "real" or "definitive" diagnostic tool, and so not think of the clinical part as being as "good" of an answer. This is a bias in western medicine, and one I walked right into.

3) I should have phrased the answer about bullseye rashes the same in this question as I did in a later question, because the results from the two questions were 6% points different. Maybe that's an OK error of margin, or maybe not. Either way, it was sloppy of me and puts us on less firm footing.

So I want us to view this question (more than any other in the survey) with a very large grain of salt. See, there's plenty for everyone:

OK, so all that said, the thing I find most interesting is the low number of bullseyes. I read on wikipedia today that "only about 80%" of people get the rash. "Only?!?" My survey puts this at between 14.9% (on this question) and 20.7% (on the later one). Even if my set up was wonky, I feel very confident in saying that the number is nowhere close to 80%. Does anyone know how to get wikipedia to change their listings?


What's the deal with the CDC anyway?

Given the confusion a lot of us seem to have about the whole CDC thing, I'm going to focus there for a chunk of today's blog.

The way the system works, if your test comes back fitting the CDC criteria, it is supposed to get reported to the CDC and you become part of their official count (22,750 cases in 2010.) If we knew very accurately the percentage of CDC positives in our study, then we could do some fancy schmancy math stuff and extrapolate out how many overall cases there might be in the US. It would have been fun. (And probably represents my own delusions of grandeur.) Thus my motivation for asking about it.

Here's what the CDC means by positive (snagged directly from their website):

In addition, by looking at the information provided with my son's test results (from Igenex), here's what the IgG and IgM are supposed to look like for that second (Western Blot) test. You need 2 positive bands on the IgM (out of 12 they still test for) and 5 positive bands on the IgG (out of 12.) These standards vary from country to country, too. The number of bands that qualifies as positive in the US isn't the same as it is in Germany or Scotland. (OK, glaring problem #1: how many of get a positive and then are going to turn around and spend the money, time and puncture wounds to run another test?)

Now the CDC even says that doctors shouldn't be limited by their testing standards in daily work with patients. In fact, here's what they do say about diagnosis: "Lyme disease is diagnosed based on symptoms, physical findings (e.g., rash), and the possibility of exposure to infected ticks; laboratory testing is helpful if used correctly and performed with validated methods." That's right, the CDC doesn't emphasize testing as the primary mode of diagnosis, but rather clinical observation. (Which is a good thing when it comes down to it, since so many of us test negative.)

Makes me think maybe we should stop picking on them so much. OK, well, maybe a little--there's still some goofy stuff on their website.

Did you know that Western Blot testing was once considered to be more accurate (and still could be without a change in the technology we use)? The reason is that more bands used to be looked at and count. Igenex testing is considered more accurate in part because they look at more bands... it is a simple concept--look for a wider range, and you are more likely to find what is there; this is sound science so long as they are all lyme.

There are many strains of "wild" lyme... a lot more than can easily be studied in labs. (And they are apparently very difficult to cultivate in a lab setting... the folks working our our behalf don't have an easy time of it!) And the lyme spirochyte is very good at adapting, so this problem isn't likely to get more simple. The chances of your particular strain showing up on enough bands to qualify as CDC positive are all over the map. If you get infected in an area that is dominated by the spiro bugs that the bands were originally based on (and they haven't evolved much in the wild since the tests were created) then you stand a much better chance of throwing a positive. For instance, here in Missouri, our local variant is often referred to as Master's Disease, not even lyme. I've been told (but haven't confirmed) that our local bugs don't show up most of the time on tests. So we have to take it with a grain of salt.

One of the complications with lyme is that evolution doesn't stop, and spirochytes have been at it for a very, very long time and learned a lot of tricks... you can expect new strains to be emerging in an ongoing way. And we won't really know how quickly the older research loses its relevance.

Dr. Stephen Buhner, on p. 66 of his book Healing Lyme, offers a simplified way that doctors can read a good Western Blot test. He says,"... a Western Blot assay with a minimum of two bands, one being 41kd and one other being lyme specific, is an excellent indication of infection." (I thought this was interesting, because that was the exact profile of my son's test, and the hospital called it a negative.) He also quotes from a study that tells us that, of confirmed lyme cases being studied, "...4.8% of the cases no IgG bands were present and in 26.2% no IgM bands were present."* So even this more useful "excellent" indicator should be taken within the context that some people with lyme won't present that way. And it means that if you get back a negative, look at it as one more chance for salt.

Going back to the CDC diagnostic approach, clinical diagnosis should always lead the way, with testing being seen as a back up. And when it comes to testing, there's enough grains of salt available to raise the blood pressure of the dead.

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*Hernandez-Novoa, B. et al. Utility of a commercial immunoblot kit (BAG-Borrelia blot) in the diagnosis of preliminary stages of lyme disease, Diagn Microbiol Infect Dis 2003.

Transparency: My positive test didn't rate CDC; mainly I was a clinical diagnosis. No bullseye.

The Maddening Search for a Diagnosis: Part II

We often hear horror stories about how people have gone from doctor to doctor with a mysterious illness. Usually the story goes that no one can help, tests don't reveal anything, the person grows increasingly frustrated and that frustration itself becomes a factor in how good they feel. Sometimes an (inaccurate) diagnosis comes, and then it is a crap shoot how effective the treatment is. And then, eventually, the person finally gets the right diagnosis... and then the real struggles begin, often started on top of years of prior frustrations and a growing sense of hopelessness.

How common is this story anyway? Today we'll look at survey questions #3, 4 and 29, and get some reality on this story.

Frankly, I was skeptical about this--OK, maybe a couple people have done this, but large numbers? Could it really be so bad? Today I'm writing with apologies for being a doubter on my fingertips. It turns out this story is true in a ridiculously high number of cases.

In question #29, I asked: How many medical practitioners did you see before you got what you believe to be an accurate diagnosis?

The basic faith that people have in their doctors includes an assumption that they'll get our diagnosis right fairly quickly and then know what to do about it. Yet only 7.8% of us in this survey got diagnosed with our first practitioner. If you want to cut them some slack and recognize that not all doctors are great at all things (and what human is?) then perhaps you'd expect that we'd be sent to a specialist or two who will then figure it out, or we'd switch doctors and the next one would see it for what it is. And yet only an additional 20.8% got the answer with doctors 2-4. That's less than 29% within what this writer would consider to be a reasonable number of professionals doing good work.

This is not good.

And it gets worse. Here's the full data from question #29:

Nearly 20% of the respondents are in that last category; it took at least 17 medical professionals to correctly diagnose lyme. That's 1 in 5 of us. There really is only so much we can blame on bad testing, or lack of expertise in a certain area. (See my last blog for more outrage about this sort of thing.)

Questions 3 and 4 also describe the incredible time lag respondents experienced between getting the infection and having it properly diagnosed. When asked how long they've had lyme, and for how long it has been diagnosed, here's the numbers:

Laying the charts on top of each other, you can see how the curves run in opposite directions: clearly diagnosis is lagging very far behind in our timelines. The peak for how long we've had it is in the 10-20 year range, and yet the largest number of diagnoses have happened just in the last year.

Here it is in numbers for folks who do better absorbing information that way:

Number of years we've......      had it for....            been diagnosed for...

less than a year                           0.8%                         32.2%
1-2 years                                    7.0%                         19.8%
2-5 years                                   17.3%                        28.2%
5-10 years                                 21.9%                        11.4%
10-20 years                               29.4%                          5.6%
over 20 years                            20.4%                          2.8%

So while almost half of us have been infected for more than a decade, only 8.4% of us got diagnosed more than a decade ago. Now of course, there are going to be people out there who got diagnosed more quickly than what this is representing and aren't here because they've gotten well and moved on with their lives. (Or simply given up. Or died.) So it is hard to say how representative of the general lyme population we are. Yet, look at the more recent years: less than 8% say they've contracted it very recently (meaning in the last 2 years) and more than 50% have been diagnosed recently. This tells me the time lag is a real thing.

What this adds up to is that a lot of us carry these bugs in our systems for long enough that the lack of good, efficient diagnosis must be blamed for why a big chunk of us have gone chronic and are so desperately ill instead of having lyme be a quick blip of mundane sickness in our lives.

What we need are five things:

1) More accurate testing. Even the best tests are frequently wrong.
2) Doctors to stop taking the CDC positive guidelines as diagnostic guidelines.
3) The mainstream medical community to get over their stubborness and accept that lyme can indeed turn chronic and look for it.
4) Broad acceptance of clinical (symptom-based) diagnosis as legitimate for both treatment and insurance coverage purposes.
5) Lyme testing (or assessment) should be a standard annual test, like a pap smear for women.*

We'll talk more about diagnosis methods in the next blog. In the meantime, this is an excellent overview of chronic lyme diagnosis by Dr. Marty Ross.


Transparency

I have had lyme for about 15 years, but only got diagnosed just under 2 years ago. I was diagnosed on the third try with licensed medical folk... though there's a story about that. 

I was actually diagnosed a few months earlier than that by a shaman who had never met me and did it on the phone. She told me I had "undiagnosed lyme disease in my system" and recommended a year of colloidal silver. I sort of took her seriously, and got the silver and started taking it, but it was expensive and I flaked; truth was, I wasn't sure how seriously to take it. 2 months later, a pair of midwives in my life insisted I get another lyme test through Igenex and we finally had the positive I needed to get on the healing journey. I kick myself a little for not taking the shaman more seriously... but of course it was only a couple months and after 15 years probably didn't really matter too much. 

Still, it makes me wish we had a much more broad acceptance of a really wide range a practitioners to take care of us. Because she cut to the chase, no blood work needed. (And hey-- the diagnostic score was, up to that point, Shaman: 1, Doctors: -2... makes ya wonder...) And yet, even I (who pride myself on being open minded about such things, and had her recommended by a friend I trust) only half-heartedly took in the possibility that she might be right on. I try to tell myself that it was because I knew colloidal silver wasn't the answer for me (though I do use it for some things); but the truth is, I was being a pig ignorant white person and blowing off her significant native wisdom. Not charming.

Would that I lived in a culture where we could take that seriously.

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* I use pap smears as an example for this because they are such a routine thing, and yet the number of new cases of cervical cancer, which pap smears are meant to catch (12,400 per year) is significantly lower than the number of new lyme cases every year.  I'm not knocking pap smears, I'm saying lyme deserves this same kind of treatment.

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.

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!