Saturday, September 20, 2008

Poking, prodding, and hard drugs

Back to: If I only had a brain

September 2007, continued...

Next began what to me seemed like an endless round of awfulness. Hospitals, tests, pain. First came the spinal tap. Now perhaps it usually hurts a bit, and the lyme magnified it. Or perhaps it ALWAYS hurts like hell. Never had one before, hope to never again. It felt like someone was sticking a meat thermometer in my spine.

A few days later the test came back positive. This is interesting in retrospect for two reasons. First, perhaps it was denial, but I wasn't sure it'd be positive. This result was at once a validation, that I had a reason for feeling this bad, and a kick in the gut. Serious, chronic illness wasn't something I'd ever experienced. It was something that happened to other people.

Second interesting point: I found out much later that lyme (in it's spirochete form, which is the only form that shows on tests) very rarely shows up in the spinal fluid. So while a positive test is for sure, a negative test was much more likely, and would have really hurt my diagnosis at that point, as it's often viewed incorrectly as a valid negative. You'd think that the bulls-eye rash and the symptoms would be enough for doctors to be satisfied it's lyme, but I haven't found that to be the case, unfortunately, as I'll describe in a bit.

Next was the visit to the ID doc. He says, yep, I've got lyme in the brain, and he orders a PICC line inserted in my arm, up into my chest. And through that line, we'll push a 3 week course of IV Rocephin, which he called the "gold standard" when treating neurological lyme. He was extremely self-assured, sees this sort of thing all the time. Don't worry, you'll be fixed right up in no time.

Next, a trip to the hospital to have the nasty PICC line inserted, which involves pushing a very thin plastic tube all the way from the inside of the upper arm, into the chest just above the heart. It's done by using a very thin wire, pushing the whole mess up there, and pulling the wire back out.

Before the procedure, the nurse is chatty, trying to put me at ease. I'm very faded, and I haltingly manage to find the words to tell her the nature of my symptoms, and that I might become totally unresponsive, but not to worry too much, as it happens all the time these days. I don't think she felt reassured, and frankly neither did I.

What was supposed to be a 15 minute procedure took a whole lot longer. They tried for 45 minutes to get the line in my right arm, pushing and yanking, which didn't feel good at all, beside the fact that according to the doctor, there are no nerves in veins, so I couldn't feel a thing. Sure, but it's still not a nice feeling.

Eventually they gave up because the veins branched, and weren't big enough. They decided to try the other arm, which required a whole round of re-sterilization, and turning me around on the table. This arm worked out OK, but I left there feeling pretty beat up, and quite sore.

My wife was taking me to all these doctors and hospitals, and in fact completely taking charge of my life, my care. And a good thing, too. She literally lead me by the hand from the car to a chair, and then do all the paperwork, and talk to the doctor, because I couldn't express myself very well, and I'd forget everything they told me, and I couldn't figure out how to write notes, either.

Around this time my wife and I started the little ritual of stopping at Starbucks on the way home from a medical visit (she'd go in while I waited in the car). I joked that I deserved it because I lived through it. A nice little treat.

October 2007

Later that day we had our first visit from the home health nurse to set up the IV. The drug is "pushed" over a couple of minutes into the line. The idea is that the patient, once taught, can do it themselves, and the nurse comes by once a week to change the dressing. There's a lot of attention to sterility, as infection of the line can be catastrophic with my immune system low because of the disease and the antibiotics.

Luckily I have my wife to help me with all this, because there was absolutely no way I could manage the PICC. My dexterity was non-existent, I couldn't remember simple instructions, and I was very likely to inadvertently shove a syringe full of air without realizing it.

I've never quite figured this out, and neither have the doctors, but the administration of the drug, or even just of saline to flush the line, caused me to have what I fondly call "fadey episodes". I think I had them before the Rocephin, but didn't really differentiate them apart from all the other symptoms.

Anyway, my wife would make me talk to her while she was pushing the saline and the drug. Usually within a couple of seconds of pushing even just the saline to flush the line, I'd go from my not-so-normal state to what feels like autism, or catatonia (not that I'd really know). Depressed respiration - didn't feel like breathing. IQ cut by half. Brain processing ultra slow motion. I always droop my jaw and stare down and to the right, sometimes drooling a bit. Speech is difficult or impossible.

I'm aware this is all happening, and it doesn't hurt or anything, but there's nothing I can do about it. Sensory input is on overload, with no ability to filter, and the air appears to be filled with "static". My wife would push the drug over 20 minutes so as to lessen this effect, and we'd sometimes watch television together. Sometimes I'd lose the ability to tell the difference between the people on TV and the people in the room. If anything unusual happened, like the sound of someone setting a pencil down on the table, I'd jump out of my skin.

This happened every single time we administered the drug, as well as most of the times I'd encounter any (even very minor) mental, emotional, or physical stress, like being in a loud, or well-lit, room, or hearing two conversations at once. This has abated somewhat now (though it just happened the other day), but was still a daily occurrence until July 2008.

When we told the ID doc we were concerned about this, he said categorically it was impossible for this to happen, and strongly implied it was in my head - that I was just anxious. Well OK, then. In retrospect, this was the beginning of a situation that came to be as bad as the lyme itself. Doctors stopped listening to me as a rational person. I was being told it was all in my head.

During this time I also had an MRI, to rule out something besides lyme. Nothing was found. The doctor (the second GP) was being thorough, but it was the beginning of a disturbing trend, this looking for other causes. I got bit by a tick (thank goodness for the rash, or the docs wouldn't believe I had lyme at all!), and I got sick. Before that I was perfectly healthy and normal. And now I know that I don't like MRIs either, at least of the brain. I never knew I was claustrophobic. And all that banging of the magnets. Quality of life really goes down the toilet when your life gets usurped by the medical "system".

Random musing: What is it about doctors, is it their personalities, or the way they're taught? Yes, we look to them for answers. But it seems that so many doctors, if they have no idea what's wrong, won't tell you anything like that, even if it means a huge fallacious jump to assume it must be all in the patient's head. And this is SO damaging, causing the patient (me) to begin doubting and second-guessing my own feelings. I'll re-watch One Flew Over the Cuckoo's Nest with new eyes.

Next up: All better now? Um, no

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