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.

++++++++

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.)

++++++++

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.

Foggy, Tingly, Twitchy and Numbles

Today we start looking at the symptoms of chronic lyme. First, let's take a brief look at the "classic" lyme symptom, the bullseye rash (technically called an erythma migrans or EM rash).

Here's the CDC's lyme symptoms* chart, from confirmed cases, 2001-2010:

So the CDC says 70% of people get this particular rash. My survey results came back with less than 60% of people having rashes of any kind, and only 15-20% were EM rashes.  The Canadian Lyme Disease Foundation website says that EM rashes occur in less than 9% of cases. When I see such big differences in results like this, it makes me curious. I want to know why the numbers look so different. (This is a basic consensus principle: when you disagree, try to understand the underlying reasons, and talk at that level, rather than just butting heads about whose numbers are "right".)

So here's the best thought I've come up with so far on this one: The CDC only counts cases that fit certain testing profiles (and their strict criteria is much more narrow than my criteria for participating in this survey... self-reporting, which is as open as it gets) and we know that lyme comes in many strains. I wonder if the tests that are out there are most effective at detecting strains that do indeed show the EM rash in a larger percentage of the time? We know that strains vary in how they present: the European strains of lyme (called more properly "borrelia" in Europe) present somewhat differently than the American strains.

Of necessity, the tests were developed based on strains that could be studied most easily in the labs, and if the EM rash was showing up regularly, these probably were the cases being diagnosed early on and therefore got the most study attention. My hypothesis is that the closer to those strains studied originally, the more likely they are to show on these tests, and meet the CDC's criteria. I am guessing that EM rashes are more common with these strains than they are in the general lyme spirochyte population. Thus, I think it may well be the case that 70% of people with CDC positives get the rash while only 9-20% of all patients get it.

+++++

Allright! Back to our survey. Here's the results from our question about what symptoms people have.

I realize this chart is VERY hard to read, but it was the best I could do with the couple pieces of technology I have at my disposal (and can competently use). If someone would like to make a better one, please do so!

Here's a blow up of the top 15 answers:

Looking at these top 15, you can see how lyme can be tough to diagnose, and why it is referred to as the "Great Imitator". Many of these top symptoms are vague, could be caused by all sorts of things and do, indeed, sound like you have the flu. If we can't rely on that EM rash to give us a clue, you can see how the level of initial misdiagnosis happens.

However, not all of the symptoms here are in the normal range for a flu. The most distinctive very common symptoms in this survey are the neurological ones. Let's call them the lyme quadruplets: Foggy, Tingly, Twitchy and Numbles. Foggy (brain fog) strikes almost 92% of us; Tingly (those weird sensations like your hand is falling asleep or an electrical current is coursing through your leg) hits almost 85% of us; Twitchy (jerking, spasms or little subtle jumps of random muscles) hit almost 80% of us; and Numbles (when your face, leg or just about anything else just spontaneously checks out on you) shows up in 79% of cases.

Need I mention that these are all weird, unpleasant and scary? And they are not associated with any flu I've ever had.

I'd say that if a patient presents with flulike symptoms plus one or more of our four neuro pals, lyme ought to be one of the first things suspected. Run a (good) test, try an experimental round of doxy and see what happens.

And... we can also see that there are no universal symptoms. Rashes (of any kind) don't even appear in the top 15 symptoms. 4% of cases don't notice a diminishment in energy, which is the closest thing to a universal experience lyme patients have. 8% of us can still think clearly, and that same number don't have body aches. Even the symptom named affectionately for the disease-- "lyme rage"-- only shows up in 53% of us. What this means is that a medical practitioner who gets too attached to a certain symptom being "the" lyme indicator will inevitably miss some cases if they aren't looking at the whole picture.

Another way to see lyme from a medical practitioner standpoint would be this: if the symptoms don't fit easily together, it could be lyme. You might have half a flu, a neurological symptom or two and night sweats. Does that make sense? Rely on this basic old wisdom: the simplest explanation is often the right one; instead of seeking out three explanations (flu plus brain tumor plus perimenopause) at least consider that it might be just one: lyme can be the medical equivalent of one stop shopping for all your ill health symptoms.


+++++++

* OK, can I just say how irritating it is to see medical professionals and organizations co-mingling actual symptoms (like the EM rash) with diagnoses (like encephalitis and arthritis). And what does "cardiac" mean exactly? There are probably so many things lumped into most of the categories, that it is hard to know how to make use of their chart. Grrr...

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.

+++++

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.

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!

++++
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.

+++++++++++++++++

*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.