I haven't posted for a bit, but as always, I appreciate your valuable input. My wife started IV rocephin about 2 weeks ago and I am looking for information on what to expect. We have to go into the hospital every day to get it done because of bureaucratic B.S. about homecare in our city. Anyway, at least we can get treatment. She is getting massive (like 10 out of 10) headaches that begin before the IV is even finished. They last for a couple of hours where she lays in complete darkness and moans until it subsides. Anyone else have this happen? She has other side effects as well: diarrhoea, full body pain, intestinal burning and gas (no yeast though) etc. Just wondering what else might happen while we go through this.
MERRY CHRISTMAS! And as always, thank you.
Todd
Posted by timaca (Member # 6911) on :
I was on IV rocephin for 6 1/2 months and did not experience what your wife is experiencing. I am so sorry!
See how long they are taking to infuse the medication. It should drip in slowly, and take about an hour to infuse. When the hospital ran it in the first (and only) time, they infused me in 1/2 an hour and my heart did not like that. At home I was instructed to infuse it in more slowly, and my heart was not as irritable.
I believe IV should not affect the gut as much as oral antibiotics. However, it does seem as if your wife is having some GI issues. Make sure she is taking some probiotics too. Ask that the hospital check her stools to make sure that she doesn't have C. difficile going on.
I did experience full body nerve and muscle pain. This wasn't during the infusion itself, but more the lyme raising it's ugly head.
Good luck....Timaca
Posted by DeniseS (Member # 7276) on :
Vicodin has helped me with my IV Rocephin herxes: head and back aches.
D
Posted by humanbeing (Member # 8572) on :
Todd, Sending hugs to you and your wife right now. She is lucky to have you supporting her and looking for help here on lymenet.
Some things that helped:
Take tylenol or motrin before infusing.
Eat a full meal before infusing, plenty of water (with lemon if tolerated).
Make the infusion time rediculously slowwwww --double or triple what is recommended. (This has made the biggest diff)
Ask her doc if she can take a couple day break to let cytokines die down.
Herxing doesn't usually happen at the moment of infusion but days later...
Hang in there... Posted by JeffM (Member # 8919) on :
Todd,
First, best wishes to your wife and you. This disease is hard.
My daughter and I both have severe lyme and it behaves differently in our different bodies. We are both on IV rocephin. It is helping me a lot, without a lot of suffering, while for my daughter, who could not tolerate or remember to take her orals, is really sick from it.
1. I agree with the slow dripping. It is caustic to veins as well. 2. Take all pressure off your wife, if possible. Just be sick, and take care of herself. 3. I take a marinol 1/2 hour before I drip. I also can drip later at nite and then sleep. I know you dont have that luxury. Maybe you / she can figure out some compromise. 4. Unlike others, I get sick right away, for two hours. The medicine makes me nauseous and very achey. 5. The treatments make my daughter very sick, sleepy, crazy, can't think straight.
For me, IV rocephin has been a significant contributor to my overall treatment. I have the same hope for my daughter.
My best advice: Your wife should use her gut instinct about how to take care of herself; be kind to herself; and also realize this is a marathon. Most of the recovered people on here, who had it for a while, say 2.5 to 4 years.
good luck, hang in there, try to keep your faith and spirits up
![[group hug]](graemlins/grouphug.gif)