Central Nervous System Disease: Couldn’t Someone Have Told Me It’s a Side Effect of My Antibiotic?

By: Loolwa Khazzoom, Founder, Dancing with Pain

January 16th, 2011 • Living with Chronic PainPrint Print

On Tuesday night, I started my new antibiotic for the overrun of bacteria in my vagina. I was thrilled and delighted that it did not seem to have any side effects. Then I had a wanky body work session on Wednesday, which left me with jacked up ear pain and restimulated old eye pain as well. Plus it left me feeling all weird, like some bad energy had been injected through my system.

Then on Thursday night, after a conversation with Comcast, my head burst in pain, and I had to go to bed. I also had to stay in bed all day Friday, with the exception of doing a little bit of work and going on a bike ride. Or was that Thursday I went on the ride? Can’t remember. Brain’s not working. Which brings me to my point:

I stayed in bed all Friday night and all day today. Hauled my ass outta bed at about 5 pm and went on a very short bike ride. After a mile, I started feeling weird. I pushed through, thinking I just needed to drink some water. But then I started understanding that this wasn’t normal, that something really not ok was happening. And then I suddenly realized that I didn’t think I could make it back.

It was late, just about to be dark, and the bike trail was pretty deserted. Plus I was on the part of the bike trail where you can’t just run up to the fire trail and over to the neighborhood area. I would have to bike in either direction to hit a path getting me off the trail. I didn’t even know if I would stay upright long enough to find my cell phone and call my mom.

And then I found my cell phone and couldn’t remember how to call. I was really panicked then. Something was horribly awfully wrong. But I kept pushing myself, and I was able to call my mom, hitting the redial button. I tried telling her where I was, but my brain couldn’t wrap around the piece of information that would tell her which direction I had gone. Oh wait I just realized I blogged about all this earlier.

So let me bring you up to date: I came home and noticed that this bump on the left side of my knee, which I’d noticed last night, had gotten bigger. Then I looked in the mirror, and it was huge and red. It was like the circumference of a tennis ball. Which was significantly larger than it had been the night before. Actually I couldn’t and still can’t remember if I’d noticed it the night before, or when I’d seen it last, because my brain wasn’t and still isn’t working right.

Regardless, I called the doctor to see about the bump. She told me to go to the urgent care center. Which was a really big deal request, because 1) I’m new in Sacramento and didn’t have any friends I could comfortably call and ask take me there, 2) my mom is disabled and can’t drive at night, and 3) I sure as hell couldn’t drive my own damn self.

I already had taken a risk and called two very new friends, because I needed food but couldn’t get myself to the store. One of them was a total sweetie and immediately went to pick up stuff for me. I had a lot of anxiety about adding to my request that he take me to the urgent care center. I tried reaching him before he arrived at the store, but it was too late. He’d already arrived. He was very good natured about it, however, and said of course he’d take me to the emergency room. Angel!

So he brought me my goodies from the store, and then he took me to the urgent care center. We waited forever, but I was in really good company. This is someone I think is cooler every time we talk. I was brought in, and the nurse was totally awesome. Then I waited for the doctor. And waited. Finally she came in.

She asked what was going on. I showed her the welt. “Does it look like it’s from a bite?” I asked her. “I wouldn’t know. I wasn’t there,” she snapped at me. Oo-kaayy. She then asked about symptoms. I started telling her about the weird stuff going on but stopped, because my mind went blank. As in, here’s a symptom for ya.

Finally I got out most of my symptoms, but not all – I forgot about the metallic taste in my mouth, the difficulty with balance, and the nausea. I did, however, tell her about the disorientation, the numbness in my arms, and the weirdness breathing. As soon as she heard disorientation, she told me to go to the emergency room and was basically done with our appointment. I kept pushing for information, and finally she had the grace to examine me. She said all my vitals were fine, that my neurological stuff was fine, but that I’d need to be seen for the disorientation, because it could be meningitis or some other scary things she rattled off.

I was pretty convinced it was the shit body work I’d had. It was, after all, cranio sacral therapy and brain work that the practitioner had done, so I figured this was all from the session. Anyhow, I pushed for info on the possible bite, and she told me that a toxic bite has three symptoms – nausea, vomiting, and severe abdominal pain, and that they all happen within six hours of the bite.

So with that, I was ushered out, and I waited (and waited) for my paperwork. I was prescribed antibiotics. I almost just ignored the prescription, but I figured I’d take it just in case, why not. Then I asked – which again, I almost didn’t do – if the antibiotic might be contraindicated with the antibiotic I’m on for my vaginal uprising. “You said you weren’t on any medications,” the doctors said. Um, yeah. Remember the part about my head not working so hot?

Well, it’s a damn good thing that 1) I had this here welt and that 2) I asked about the contraindication, because then the doctor looked up the antibiotic I was taking, and there it was. ”Precaution: Central nervous system disease.” Central fucking nervous system disease! Why would my doctor put me on this?! “Discontinue if neurological symptoms occur,” the medical sheet said, then went on to note “adverse reactions: headache, metallic taste…”

OMG. I think that doctors totally should be required to tell patients the possible side effects and the percent of times those side effects happen. So should the pharmacists. Instead, I was just told that I should probably take it with food, because it could cause stomach upset. Stomach upset? Fuck stomach upset. The drug causes fucking central nervous system disease!

So. Now I’m going off an antibiotic a second time without finishing it. Fuck! I am anxious about the possibility of developing some bacteria that is resistant to antibiotics. But my new friend has informed me that he eliminated a tumor in his rabbit, but feeding it cilantro every day. So maybe I can get rid of this vaginal infection by eating tons of garlic and cilantro.

More soon. Meanwhile please pray for my return to health. My head really is not OK, and I’m feeling scared.

I just looked up the antibiotic on the internet. Here are a couple more symptoms: nausea and numbness, both of which I’ve had since starting the drug. The fact that I got the wanky bodywork right after starting the drug got things all confused about what was what.

Also, I found out that the antibiotic is a known carcinogen. WTF. Why would anyone prescribe this shit? Seems a lot more dangerous than my bacterial uprising. Oh yeah, and for funsies, it can cause meningitis. Fuck.

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