posted
Wondering how long some of you stayed on IV rocephin. It's the only IV drug I've ever been on, in the beginning I was having some success but it seems now to all have gone away. Currently administering 2g 2x/day 3 days on, 4 days off. My doc is thinking of an increase or doing the whole 4g at once.
Severe nuero symptoms with constant brian swelling, but now the MS symptoms have crept back in with severely tightened leg muscles (almost like constant charlie horse cramp) making it very difficult to walk among other things. I am also on oral zith. Tried to get on oral Rifampin but herxed too severely with increased brain swelling. Same story with even a tiny dose of doxy.
Looking into getting an HBOT in the house after reading about so much success here with brain involvement. Terrified to switch IV drugs.
Thank you guys, as always!
~Penny joahsark
Posts: 219 | From pacific nw | Registered: Jun 2009
| IP: Logged |
Lymedin2010
Frequent Contributor (1K+ posts)
Member # 34322
posted
I did for almost 4 months. Only the first 3-4 weeks helped & after that it was all down hill. It was hard to tell if it was herx or disease progression & now I know it was disease progression.
Doxy w/biaxin was the only thing that helped after that.
Posts: 2087 | From NY | Registered: Oct 2011
| IP: Logged |
beaches
Frequent Contributor (1K+ posts)
Member # 38251
posted
Can't even begin to tell you how helpful 4G IV rocephin and 500MG zith IV helped my kids become functional.
We pulsed...4 days on, 3 days off. On the off days we gave oral diflucan.
We also pulsed tindamax, 2 weeks on, 2 weeks off.
Had the piccs pulled and trying a Summer protocol. Working so far mensa mens.
Posts: 1885 | From here | Registered: Jul 2012
| IP: Logged |
droid1226
Frequent Contributor (1K+ posts)
Member # 34930
posted
a yr and a half of 4 gms everyday.it definitely reversed the downward spiral i was in. could of used another yr or so.
posted
Thank you so much!!! Taking all this to my doc!! Love how you guys always give me some hope.
Posts: 219 | From pacific nw | Registered: Jun 2009
| IP: Logged |
posted
Zo just to be sure I got everything. Do 4grams all at once at least 4 days on, 3 off and combine with tinidazole (tindamax), I already lost my gallbladder so don't have to worry about the ursodinol. Also stay on the oral 500 zith?
Anyone try Rifampin and tolerated tindazole better? Pretty scared of it but know I must try.
Thank you!!
Posts: 219 | From pacific nw | Registered: Jun 2009
| IP: Logged |
Judie
Frequent Contributor (1K+ posts)
Member # 38323
posted
I got very ill on rifampin. Tindazole (tinidazole) made me feel better right after I started taking it. No ill effects. I was pretty surprised after my bad reaction to most antibiotics.
I just started malarone and that's helped pretty immediately with muscle weakness and energy. I never tested positive for babesia, but a lot of my symptoms point to it.
Posts: 2839 | From California | Registered: Jul 2012
| IP: Logged |
posted
I did Rocephin for 18 months and experienced great results while continuing the infusions. I did 4grams a day 5 days a week and also oral drugs. We changed them every 6 weeks or so, so I don't remember it all since that was back in 2006. I was pretty much maintaining until month 13 and then I took zith, riphamin, pulsed flagyl and alinia. While it kicked me on my ass, I also experienced major brain improvement.
I ended up getting sick again because we didn't know I had babs. I went back on IV rocephin in 2009 and then did this other IV drug that was very controversial (I can't remember) tigacil or something like that. It was awful,but I did it for 2 months and felt a lot better. When I said it was awful, I mean I felt like I was going to throw up and did every hour, I had horrible pain, etc. But then I felt like amazing after 2 months on that stuff.
I went from being on disability to being able to work full time, living on my own, work out, etc. I still take A LOT of oral drugs and I have my issues, my brain is still not back..but I mean compared to where I was Rocephin changed my life.
I did my infusion with 1000cc's of saline over several hours. I would only do it once a day and I infused at the end of the day, to force me to wind down for several hours. The saline also helped to hydrate me and it really does make you feel better. It does not cost more for more saline. At least for me it didn't. Even if you can't do 250cc or 500cc that's better than only 10cc.
Any that's my rocephin experience. Good luck!
Posts: 484 | From Burlingame, Ca | Registered: Sep 2005
| IP: Logged |
posted
I've been on and off of Rocephin. I've done 5 rounds of IV antibiotics in the last... 4 or 5 years?
At first I noticed HUGE improvements, especially in neuro symptoms. By the third round, though, I was kind of getting diminishing returns on it. Doctor eventually put me on IV Zithromax, and I took that for rounds 4 and 5.
Also, I always was on at least one oral medication with any IV I've been on.
Posts: 306 | From Brownsville, PA | Registered: Jul 2007
| IP: Logged |
posted
Sorry you are for not doing well. My daughter was on IV Rocephin for 2 months.She ended having her gallbladder out. We got off b/c she starting having severe abdominal pain to this day. We did not know to take Ursodial. Make sure you are on that. My daughter found the most help with the drug Bicilin. It really helped with the neuro and she was able to get to 75%. I hope this helps and that you find something that will help. Feel better.
Posts: 1 | From Birmingham,AL | Registered: Jun 2014
| IP: Logged |
posted
I also ended up having my gallbladder taken out. However, it was due to something different then the IV rocephin, but did happen only 1 month into treatment. It was a tough recovery.
Posts: 484 | From Burlingame, Ca | Registered: Sep 2005
| IP: Logged |
posted
Thank you for all your responses!! Do you guys recommend doing the 4 grams all at once? O had been splitting them up morning and night but read somewhere it may make a difference? Thanks again.
Posts: 219 | From pacific nw | Registered: Jun 2009
| IP: Logged |
posted
Interesting responses from everybody. Off IV Rocephin after about 8 mths, did 'well' (for me) though the last few mths other sx began to creep in and now off the IV those sx have been getting worse (like pain, joint pain, more fatigue, feverish, etc.).
I could never in a million yrs done 4g/day. No way. 2g/day was bad enough, and I did it in the evening since it made me very sleepy and fatigued. Basically ate and went to bed. If I could have tolerated so many meds I would have continued the Rocephin and added Mepron. That would have sent me to my grave.
From your earlier success maybe you should give it another try? My LLMD says he doesn't prefer the 4g to be given at once but there are pts who do it. I believe BID might be easier to tolerate for most. Hope you feel better and try to figure this out.. I'm at the same place now too! Good luck.
Posts: 394 | From Southeast | Registered: Oct 2012
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
Printer-friendly view of this topic