I was on a long course of many months of i.v Rocephin and was doing much better. I wasn't all the way recovered by any means, but defintely way, way better and able to do more than I had in years.
But then I had a gall attack and had to stop. I wanted to switch to another i.v. med but my LLMD wanted me to try orals first and also to treat for Bartonella.
Personally, I didn't think I had Bartonella. I still am not convinced I have it. Oral Rifampin/Biaxin has done nothing. I am in my third month off i.v. and everything has gone straight to hell and I am virtually bed ridden all over again. My cd57 is 40.
I think it was too soon to stop the i.v. meds. I feel like we needed to continue to treat for Lyme. Some have told me that if 6 months of Rocephin didn't do it then continuing longer won't help either. But then I was doing so well ON the Rocephin. Obviously I can't stay on it for life, but I still wonder if it was too soon. Does anyone have experience with this? How did you handle it and how did it work out? Thanks in advance for any help.
Posts: 13 | From USA | Registered: Mar 2008
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posted
boy that is awful! I have heard of some being on for 9 months but think thats the max i ahve heard/read
are you on orals???
i too increased greatly after first 2 months of orals and then only 2 weeks of rocephin IV and crashed and burned following the next 6 weeks...back to orals.
started out with doxy but making a change in the next few weeks too - it started out doing really well and then seemed to back down too, not donig real great these days either
looking for the right mix - just dont give up!
-------------------- Seeking renewed health & vitality. --------------------------------- Do not take anything I say as medical advice - I am NOT a dr! Posts: 830 | From TN | Registered: Aug 2007
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posted
I was on Rochepin for 5 months and made good progress, not as far as I would have liked, but it was good. I was also on orals at the time (Zith for L-form, Flagyl for cyst form).
My LLMD switched me to Bicillin LA shots after the Rocephin (and continued the orals) and we kept the PICC line in for 1 month longer to make sure I did not relapse hard.
On the Bicillin, I think I back slid some, but not a relapse. I have been on Bicillin for 6 months now and I feel I have gained back alot of the ground that I lost when I went off Rocephin. I'm still cycling, so I will stay on antibiotics.
My LLMD says he always likes to switch to Bicillin LA after Rochepin IV to prevent replapse.
Robin
Posts: 276 | From Maryland | Registered: Dec 2006
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Health
Frequent Contributor (1K+ posts)
Member # 6034
posted
Hi,
I think? that California Lyme, a member here was on it for 7 months or so before things really started to change, it might have been month 8 maybe, continuos IV Rocephin.
Check this out, it was on here I think I read it. I dont know where though, sorry.
Trish
Posts: 1250 | From Canada | Registered: Aug 2004
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savebabe
Frequent Contributor (1K+ posts)
Member # 9847
posted
Have you ever treated bart with levaquin? I was originally on rifampin and biaxin for bart with no success, until I took levaquin.
I always thought that I did not have bart since I never tested positive or had any of the classic symptoms, and boy, was that a mistake. I have made significant improvement since addressing bart.
Feel better.
Posts: 1603 | From ny | Registered: Aug 2006
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posted
I'm very sorry to hear that you are not doing well. Have you taken any cyst busters? Flagyl, for example?
You definitely need more treatment for Lyme and I think the suggestion of Bicillin is a good one. At any rate, you need to take cyst busters during or immediately after being on Rocephin, in my humble opinion.
I hope your dr will do something FAST!
And yes, many respond well to Levaquin even if Rifampin doesn't work.
Hang in there!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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daise
Unregistered
posted
Anon,
There's some good direction here. The best to you.
You can search this site for lots of information on LA Bicillin shots (intramuscular shots in the butt.)
Following 6 months of IV Rocephen, I got shots in the butt 3 times a week for ten months and I'm glad I did.
Thanks to everyone who replied. My doctor had wanted me to be on IM Bicillin but I am allergic to pennicillin so I can't do that. We had originally discussed IM Rocephin for post-iv treatment but the gall attack sort of nixed that idea.
I have been on flagyl during the i.v. treatment but recently my doc took me off of that because he said all the cysts should be gone. Personally, I don't see how that is possible.
The orals I've been taking for the past 3 months(Rifampin/Biaxin) have not helped and I am in full-blown relapse since going off iv rocephin. My doc wanted to use these orals and was wary of continuing any i.v. treatment because of toxicity.
Now we are trying to decide whether I should continue i.v. treatment with Claforin since I can't take Rocephin.
I am just wondering at this point if this would be helpful.
Posts: 13 | From USA | Registered: Mar 2008
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posted
Hi Anon, If you can get IV claforan, you should probably try it. It may help things get better or at least keep things from getting worse.
My daughter was on IV rocephin for 3 months, got gravel in her gallbladder. Switched to IV zithro-had hearing loss that would come and go, so she went on IV claforan. While on IV zithro the brain stuff slipped backwards, but she gained it back on IV claforan.
Good luck!!
Posts: 41 | From Warfordsburg,PA | Registered: May 2007
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Does Claforan affect the gallbladder? I thought it was totally gallbladder safe, but that was just an assumption. The LAST thing I need is a gall attack or surgery.
Posts: 13 | From USA | Registered: Mar 2008
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