Saturday, January 29, 2005

Infusion plan

My speech slurring is increasing, and is noticable to strangers now, though none have commented on it, nor have the kids. The awkwardness walking continues to increase.

Ninety percent of parenting is talking, and it really concerns me to think of losing my ability to speak. A lot.

Currently the plan is that I go to the infusion center at a local hospital for the first ceftriaxone injection. They put a needle in me that stays in me for the whole course of the treatment, which to start with will be seven days. I don't want my kids seeing the persistent needle, and I don't want it being jostled or torn by my clumsiness, so I am going to ask if they can put it up close to my armpit. The first day's adventure should take about three hours.

Then the next day the infusion nurse will come and teach is how to do the injection at home. That will eat two hours. We only have two days a week when both the kids are simultaneously in preschool and daycare, and my lovely wife will be sacrificing much of that time for this effort, rather than doing her professional work.

Meanwhile I am also interested in pursuing the acupuncture, probiotics, and glyconutrients. The acupuncture appointment has been made for Monday Jan. 31. I still have not ordered the probiotics and glyconutrients. Lazy dog. Maybe I can get some probiotics first thing Monday and start slamming them right through to Wednesday. I want to have good flora going into the procedure, and a way to restore them after. And what the heck, during. But this drug ought to kill off every good bug I have in me.

One thing my neurologist has made extra clear is that if the drug gives me diarrhea, I must stop immediately.

A friend who might have Lyme disease, or might not, wrote me about his experience with antibiotics, educating me about something called the Herxheimer reaction:

> Here's what happened to me. I was about 7 months
> into my "attack", and still undiagnosed. My Lyme
> test was negative, my neuro said maybe MS, but
> probably not. I had done research on minocycline,
> and found that if it was MS, then minocycline was
> having good results as a means to stop its progress.
> My neuro wanted nothing to do with trying this, so
> I found an "alternative" doctor, who was quite open
> to experimenting, and he gave me a minocycline
> scrip. Day 1, nothing. Day 2, nothing. Day 3,
> woke up feeling like I'd been hit by a truck. Day 4
> the light bulb went on over my head; I'd remembered
> reading about the Herxheimer reaction with Lyme
> patients, but I really wasn't expecting it, so had
> sort of forgotten it.
> I felt crappy for about 8 or 9 days, then started
> feeling better. Within a week, I had an appointment
> with a Lyme specialist, and he said that yes, that
> could have been a Herxheimer reaction, and he
> switched me from minocycline to tetracycline. I
> reported this back to my alternative doctor, and
> then we both agreed to let the Lyme specialist
> manage my meds for the next year or so. So I've
> been on antibiotics for about a year now (from
> minocycline to tetracycline to biaxin and, in the
> past month, back to minocycline). Still
> symptomatic, still slowly getting better, and yes, I
> know that that might just be coincidence.
> But as for you, well, if you feel like you've been
> hit by a truck, you'll know why. Note that
> Jarisch-Herxheimer reactions last longer for Lyme
> (maybe a week, sometimes longer) than they do for
> syphilis (only 24 hours or so), which your neuro
> might not know. But even if you don't have a J-H
> reaction, you still might have Lyme. So by all
> means find a specialist!
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