Tuesday, September 28, 2010

Famous Last Words/ My Rifampin Die-Off Reaction

I spoke too soon: yesterday, Rifampin kicked my ass.


It's hard for me to describe the experience of a die-off reaction, but I'll try.
Sometimes it feels like the flu, with aches and pains and a feverish feeling (usually because I have a fever).
Sometimes, like yesterday, it feels like . . . I'm toxic: My body is a vat of biohazardous waste. And I can't drink enough water or choke down enough chlorella to remove the toxins fast enough.


The feeling of toxicity is accurate. According to this page, "The Herxheimer Reaction is an immune system reaction to the toxins (endotoxins) that are released when large amounts of pathogens are being killed off, and the body does not eliminate the toxins quickly enough. Simply stated, it is a reaction that occurs when the body is detoxifying and the released toxins either exacerbate the symptoms being treated or create their own symptoms." 


Not everyone experiences a die-off reaction, but some people experience very harsh die-off reactions that can be dangerous, especially if there is impairment to the organs/organ systems responsible for the elimination of toxins: the liver, the lymphatic system, the kidneys, the colon. 


I seem to fall somewhere in the middle; my die-off reactions don't last for weeks at a time, and have never, to my knowledge, been dangerous. When I feel especially toxic, I drink a ton of water, lemon water, detox teas, and apple cider vinegar (ACV). I take ACV and epsom salt baths. I eat handfulls of chlorella and other binders, like activated charcoal. One of the ways I can tell my body is overloaded with toxins is an increase in my chemical sensitivities. For example, I can be in my bedroom with the door closed and detect that my mother, behind the closed door of her bedroom, has sprayed a drop of perfume on her wrist. And that drop of perfume makes me hide my head under the covers so I can breathe more easily. It's incidents like that which make me realize I've been slacking in keeping up with regular detoxification. 


For times when I'm very chemically sensitive but have to be out in public or around people who wear synthetic fragrances, I have a mask. It's not exactly fashionable, but it works. I carry it everywhere with me, just in case. 



Sunday, September 26, 2010

The Bartonella Roller Coaster and General Ramblings

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.

Tuesday, September 21, 2010

Sweetness by Stephen Dunn

Just when it has seemed I couldn’t bear
one more friend
waking with a tumor, one more maniac

with a perfect reason, often a sweetness
has come
and changed nothing in the world

except the way I stumbled through it,
for a while lost
in the ignorance of loving

someone or something, the world shrunk
to mouth-size,
hand-size, and never seeming small.

I acknowledge there is no sweetness
that doesn’t leave a stain,
no sweetness that’s ever sufficiently sweet ....

Tonight a friend called to say his lover
was killed in a car
he was driving. His voice was low

and guttural, he repeated what he needed
to repeat, and I repeated
the one or two words we have for such grief

until we were speaking only in tones.
Often a sweetness comes
as if on loan, stays just long enough

to make sense of what it means to be alive,
then returns to its dark
source. As for me, I don’t care

where it’s been, or what bitter road
it’s traveled
to come so far, to taste so good



______________________________


A good friend of mine posted this poem to Facebook today and, since it's a poem I love, I decided to share it here. If you're in the mood to read some good poetry, check out Words Like Oxygen, the blog where I post my favorite poems. 

Friday, September 17, 2010

I've got my PICC line and all is well.

I'm exhausted, so this won't be as coherent as I'd like, but I'll do my best.

The insertion yesterday was painless, though really bloody, but in an awesome way. Then again, I love horror movies and gore, so to someone else the experience might be really harrowing.

My mom and two of my sisters came and watched the insertion. One of my sisters had to leave the room at some point because when it was over and the woman was cleaning the blood off of me, there were huge clots of it hanging off my arm. It looked like pieces of liver. AWESOME. My sister was only out of the room briefly though, and had taken a bunch of pictures of the procedure, at my request. I haven't seen them yet, but depending on how nasty they are, I may post them.

I had expected to get the line in my left (non-dominant) arm, but got it in my right instead. Supposedly there are less problems in the right arm. I'd also expected it to be above my elbow, but it's more like in the crook of it because that's where the vein was juciest. Having it in my right arm is kind of a pain in the butt, but I expect I'll get used to it pretty quickly.

After the insertion, I got my first infusion of Rifampin. It went well. No die-off reaction yet. Today I went back to the doctor's office to get my dressing changed -- they put on a pressure dressing for the first 24 hours. Then I got my first infusion of Zithromax. Since it takes about 90 minutes, I started it at the office and then went home after they saw I wasn't having a bad reaction to it. Since I've been on oral Zithromax in the past, they didn't insist on keeping me for the whole infusion.

Once I'm done infusing, I have to flush my line with saline, which is so weird because I can actually taste it. Then I flush with Heparin to make sure there's no clotting happening. And that's it.


I had wanted to write a much more detailed entry about this whole experience, but my brain is too mushy for that today. In fact, if this entry makes much sense at all, I'll consider it a success.

Thursday, September 16, 2010

I am nothing if not consistently inconsistent.

Again, it has been too long since my last post. Oh well. I have been writing more lately, but only for a very select audience. My train of thought (when I have a somewhat cohesive one) tends to meander, and may not necessarily have a clear point, so I choose not to share it with the Public. Instead, I write in my paper journal or in my private online journal. However, today I have something to say:

I AM FINALLY GETTING MY PICC LINE!

Sure, it only took a year and two months to finally get it sorted out and scheduled (!!!!), but the day is here. In fact, my doctor appointment is in less than three hours -- so I really should get up sooner than later, but first I want to put into words how I feel about this whole thing.


How do I feel about it?

Well, yesterday, a friend asked me if I was excited about finally getting my line. I said, no, I don't think "excited" is the right word. If I look at the big picture, then yes, I'm more excited than not about the prospect of receiving effective treatment that will allow me to experience a sense of normalcy. I will eventually be able to work and to go back to school. I'll be able to make plans without having to cancel at the last minute. But, right now, I'm not thinking big-picture; I'm thinking, "Oh my god, they're going to thread a line up a vein in my arm and down into my chest, and then they're going to infuse that line with potent antibiotics that will make me sick, and then I'm going to be miserable...." That line of thought can go on for quite some time, spiraling into even more catastrophic thinking if I let it, but I rarely do. Something else I try not to think about is the fact that I will have to clear my line with heparin every single day, so as to avoid a blood clot. Oh, and I also try not to think about the potential for sepsis.

::sigh::

I am feeling optimistic about the effectiveness of this treatment though. Yes, it will make me miserable at first, but what we're treating (Bartonellosis, a common co-infection) is the source of so many of my most awful symptoms. So, once I go through this treatment, my quality of life should vastly improve.


I'll leave you with a picture of my left arm, pre-line. In several hours, I will have a dressing wrapped around my arm, above my elbow, covering the site of the line, keeping it sterile. I'll have to figure out how to wrap it up so I can shower, because I can't get it wet. Luckily, I have an amazing community of friends with Lyme Disease who have already gone through this and have given me pointers on what works and what doesn't work re: showering/covering the line.


Now, I'm off to shower, dress, and head to my doctor's office. Wish me luck!