I've been on IV Rocephin for 5 months and have not made nearly as much improvement as my doctor would have liked.
Some of my joint pain, neuropathy and general ill feeling are slightly improved, but headaches and brain fog and some other neurological symptoms are not.
My LLMD doesn't feel comfortable continuing on Rocephin if there is no benefit and so little improvement.
He wants to pull my PICC line and try orals again because I have developed a latex/adhesive allergy and am having a rough time with it
I am already on Biaxin and doxy for the past month and a half. I also started seeing my improvements once these were added to the Rocephin- I didn't notice any changes before these were added.
LLMD will up my dose of doxy to 600 mg/ day and add flagyl.
I'm worried about relapse as I've read a lot of people have after stopping Rocephin, so does this new plan sound reasonable? What do people normally do after stopping Rocephin, especially if the gains haven't been significant enough?
Posted by keltyl (Member # 14050) on :
I asked my LLMD about the relapsing. He said you have to go on orals when you stop the rocephin.
I also have an allergy to adhesive, that's something I didn't think about.
Posted by MariaA (Member # 9128) on :
Hmm, good, sounds like what he wants to do is reasonable, especially since the gains have been so subtle.
That blog is really interesting, thanks. The main difference I see is that she actually had an improvement in cognition where I mostly have not. Perhaps that class just doesn't work for me for some reason. I'm just glad (maybe in a weird way?) to be adding flagyl since it might get me to the next level.
Any other experiences greatly appreciated. Scares me so badly to lose the PICC if there are other options!
Posted by Buster (Member # 19472) on :
You need an antifungal/ cyst buster.
Posted by soleil16 (Member # 16326) on :
anyone else?
Posted by MariaA (Member # 9128) on :
thre's another IV antibiotic besides Rocephin, isn't there? I've heard of several being used, one of which is the alternative when someone can't take Rocephin for some reason.
Posted by garunner (Member # 19474) on :
I was on Rocephin for 3 months with my first doctor... it helped a little, mostly with the joint pain. My current LLMD agreed that I had gotten all the benefit I was going to get out of the Rocephin (he doesn't really use it anymore, thinks merropenon is better) and since Feb., I've been on a very aggressive protocol of the following: Merron, Clindamycin, Zithromax, Levaquin, and Tygacil (not all at once of course, but all IV). I take orals and supplements as well.
Slowly, but surely I'm knocking out lots of symptoms. Feel free to PM to you want more info.
Posted by Peedie (Member # 15355) on :
garunner - what are your co-infections? which - is for what? -p
Posted by MariaA (Member # 9128) on :
Thanks garunner and Maria, I'd never heard of Merron before.
This is exactly why I'm really not wanting to have the PICC pulled (and my nurse is coming out this afternoon to do it : ( ). I feel like there are other things to try. Rocephin isn't the be all end all. And- one of the reasons I started IV was that for the first time in my life I was having terrible GI symptoms, all caused by oral antibiotics. I really feel like he's quitting on me without giving it a really good shot...
For what it's worth, I have an appointment with a different LLMD at the end of July. I wanted a second opinion so I suppose if he thinks it's warranted I can always get another PICC.
Posted by MorningSong (Member # 19989) on :
With Doxy and Biaxin, I'd make sure you are taking extra, extra probiotics.
![[Frown]](frown.gif)