Treating Bartonella is a roller coaster ride, to say the least. So far, I've noticed subtle changes that indicate meds are working, so that's heartening. But, WHOA, serious roller coaster ride. In addition to the pain and discomfort typical of die-off reactions, I'm experiencing psychiatric die-off symptoms, including mood lability, periods of increased anxiety and depression, hypersensitivity, weepiness, rage, dissociation . . . the list goes on. Essentially, I'm Dr. Jekyll one minute, Mr. Hyde the next, repeat ad nauseam.
The symptoms aren't by any means new to me; I've dealt with them for most of my life. But I'm not used to experiencing them all at once and with such intensity. It changes from day to day and hour to hour, but a general pattern of anxiety and agitation in the evening has emerged. It's very . . . uncomfortable. But I'm finding that, as long as I ride it out, as opposed to getting stuck on how much I don't want to feel this way (!!!!!), it passes a lot more quickly and I feel a lot more sane.
I'm on consecutive day 8 of IV Zithromax, which won't be the norm, as I'm supposed to infuse 4 days of Zithromax, then 3 days of Rifampin, then back to Zithromax, etc. But the schedule got screwed up since I started with Rifampin the first day, then Zith the second day, then back to Rifampin -- or something like that -- so I'll start my normal schedule tomorrow. I've been told that Rifampin is harsh and difficult to tolerate, but I didn't feel much in the way of a die-off reaction the 2 days I've taken it so far, whereas I had an almost immediate die-off reaction from Zith. Maybe this means I tolerate it well? Or it may not have built up enough in my system to cause a major reaction? Or both?
I'm relieved that tomorrow's a Rifampin day because Zith makes me feel so foggy and out of it. But what I don't like about Rifampin is that I have to take it twice a day, 12 hours apart, and prepare each day's doses in the morning. First of all, I don't typically get up in the "morning," so I'm going to have to set my alarm to wake me at a decent hour, lest I want to infuse my second dose at 2am. What I do like about Rifampin is that it only takes about 30 minutes to infuse, as opposed to the 90 or so minutes it takes to infuse Zith. True, I'm using an infusion ball and not an IV bag, so I don't have to rely on gravity, nor do I have to remain in one place for the duration of the infusion, but I find my line gets caught on just about everything when I'm active during an infusion, so I tend to stay in one place.
You know what freaks me out about having a PICC line? AIR BUBBLES. Apparently, "microbubbles" are normal and won't hurt me, but they scare the hell out of me. Yesterday, mid-infusion, I got scared because the little bubbles seemed to be grouping together to form larger bubbles, so I unscrewed my line and called the nurse whose cell # I have for any questions or concerns. She calmed me down (this was not the first time she's had to calm me down over the phone) and told me that, though they wouldn't hurt me, I could get rid of the bubbles by pulling them out with a saline syringe, and then just reattach to my Zith line and finish the infusion. So, I screwed on the saline syringe, pulled out the bubbles (and some blood, too) to my satisfaction, and resumed my infusion. After that little freak out, I was totally spent so I pretty much curled into the fetal position to minister to my anxieties, and eventually passed out for a couple of hours. I hope today's infusion is less eventful.
I'll end it here because all I'm doing right now is rambling, and that's best left for my paper journal. I think some SuDoku is in order.
You are a rock star. I am in awe.
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