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.

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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.


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* 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...