Puzzalot

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The Case for (and against) a Lyme Disease Infection

My doctor seems to think that the tests run so far show that I have a clean bill of physical health, despite my symptoms.  So I've ended up playing House, M.D.  I admit, it may be a worthless cause, as the human brain is programmed to look for patterns, even if they don't exist.  Regardless, I try and be scientific about it, but the pattern I keep finding is Lyme disease.

The case for Lyme is pretty simple:  I've visited a few tick-infested areas this summer (Yosemite, Bodega Dunes, Lake Sonoma) and every single one of my symptoms has Lyme disease listed as a possible cause.  My initial symptoms started just days after visiting Lake Sonoma.  The rebuttal is that they're also symptoms of anxiety, depression, chronic fatigue, fibromyalgia, and several other issues as well as the fact that Lyme is nowhere near as prevaliant on the West Coast as the East.

The case against is also pretty simple:  No bull's-eye rash.  Limited fever.  Two negative ELISA tests  The rebuttal is that 1 in 4 Lyme sufferers either didn't have or didn't notice a bull's-eye rash, not everyone gets a fever, and the ELISA test is notorious for producing false negatives.  The CDC explains why ELISA false negatives occur, though:  Premature testing and antibiotic interferrance… both of which have happened to me.

I admit I almost want it to be Lyme disease.  In theory, just a course of antibiotics and done, right?  But I really want to be sure, one way or the other. 

Yesterday, I started having increased sensitivity to sound.  Today, I started having tinninitus.  Possible causes (of several) for both?  Lyme disease or depression (yay).  They're also symptoms of a migraine… but a migraine is also a symptom of Lyme disease and depression.

Terrific.

How the hell am I supposed to watch The Force Awakens now???

  • egnor

    You know this, but playing House never goes anywhere good. Published literature lists diseases and symptoms but never lists probabilities or subtleties; you always end up self diagnosing as something dire and exotic.

    I’ve been there, in the sense of having weird chronic illness that doctors shrug at, but much less severe than you have. So I do understand the temptation. As a nerd, I want to Figure It Out! And I wish there were more productive ways to engage. (Maybe they are and I never figured them out.)

    And there are terrible loops between disease and stress. As you’ve learned, unexplained chronic disease is amazingly stressful. And constant bodily anxiety creates more problems, whether or not the original problems were physical in origin. So it all gets tangled up. I had tinnitus once, and saw doctors, and had MRIs done, and had all kinds of fear and angst over it. Eventually I read an article about the psychology of tinnitus and decided it made sense and it faded right out.

    I did have a weird rash once and got put on the Lyme disease regimen as a precautionary measure, even though I *didn’t* have any exposure to ticks. (I was on the east coast.) Rash went away and I didn’t get sicker. Who knows?

    I say this all not to imply anything about your current situation, but I know the struggle is real. Good luck keeping a grip on sanity. It’s hard.

    • gotskott

      No, I totally agree with you: Self-diagnosing and illness research is not the way to go. The number of times I’ve read “… and could eventually cause death” at the bottom of a WebMD or similar site is terrible. The stress, even if not felt mentally, comes out physically. The sad thing is, even being aware of it, I still want to look things up to Solve The Problem. It’s not easy taking a step back and saying, “Hey, didn’t you say you were going to cut stress out of your life?” Writing it down here is kind of my way of telling myself enough is enough… get on with things. Here’s to hoping.

      • egnor

        Some people are fortunate to find a doctor who’s willing to work with them to entertain alternate possibilities (without being condescending, or scoffing at you for wanting to do research and education on your own, or getting annoyed because you’re daring to question their wisdom). I’ve never had that relationship myself, but I’ve heard of it :-).

        Best of luck to you, sir!