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.

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.