I just took a day off from Rocephin and the next day my hands were shaking and I was getting all kinds of tingling and incoordination at a level I haven't had before treatment. Its really discouraging... I imagine it is the spirochetes coming out of the cysts once the antibiotic level is low, but why so intense? It was like my symptoms before treatment and was getting worse and worse,... my hands were so shaking I could barely mix the Rocephin & Inject it.
What has worked for most people here, to stay on Rocephin continously 7 days a week, or to take day(s) off every so often?
I couldn't believe the symptoms came back so fast and some were totally different severity. I am taking 500 mg Tinidazole 2x a day as a cyst buster but it is really scary to think that once I stop this will or could all come back and be even worse...
Any help or advice?
-------------------- "...reading the Meditations for long periods can be conducive of melancholy." --qtd. in intro to Meditations Posts: 122 | From San Diego, CA, California, United States | Registered: Mar 2005
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
I don't know!!! It could just be the Tinda side effects or Herxing that is masked by the Rocephin use!!!!! I would ask my doc about it- not an emergency- but just next time you see him or her!!!!!!!
It sounds distressing though!!! It sounds like Tinda to me!!! It can cause neuropathy, the tingling- and maybe the Rocephin was stopping it from happening...>?
Ask your doc*)!*)!! Best wishes, Sarah
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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posted
When I did IV Rocephin a couple of years ago, I think it was 2 mg twice a day, Monday through Thursday. It worked well for me.
Part of what was nice was that I only needed a heplock, which I then removed myself when I was done on Thursdays. Then I had a "free" 3-day weekend.
I do not recall herxing while on Rocephin, and I didn't have an increase in symptoms during the breaks.
I have never taken tindamax, but from what I have read on here, it sounds like it causes a rough time.
Posts: 48 | From USA | Registered: Aug 2006
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posted
Thank-you Meg, CaliforniaLyme, Monkeyshines and NoVAChick.
My llmd didn't really seem to know what it was, her best guess was that it was the bugs coming out of my cells and provoking some kind of reaction. It's just scary because I've had bad symptoms before but never bad in that way. Its scary to think you are making yourself worse, or even your limited progress is an illusion.
CaliforniaLyme, do you know how the Rocephin could mask the Tindi? I thought they were supposed to work together. Its not like I was having one set of bad symptoms and then it was another after taking a break from the Rocephin. Its more like I was humming along at "normal" for my sick self, but then all of a sudden got really intense symptoms like the tremors etc. So if it was the Tindi killing cysts shouldn't I have had those symptoms on all the days I was on Rocephin, especially since Rocephin is (in)famous for making cysts?
Anyhow, sorry to sound so totally scared. Also my llmd said my Lymphocyte tests have been coming back abnormal and that she was going to run a more detailed lab to rule out things like cancer. She kept saying things like "something is really wrong here" so that it wasn't exactly the most reassuring thing to hear (even though the most honest probably).
Knowing things like that make me think of dying (or think of more)... I keep thinking that if you geniunely were able to do a pure good for others or just one person, than you would die well. If other people's lives were somehow richer for you having been there for them, but I don't feel like I've ever been able to do that completely because it is so hard to communicate your feelings in a useful or understandable way when you are sick. Sorry to go on a tangent... Maybe this belongs more in Gen. Support.
Often i wish I had an opportunaty like that, to do a pure good and then die, or die attempting to do one... Maybe my mind is trying to think of a way out that would't violate the idea of a persons life having meaning for others.
john duncan
-------------------- "...reading the Meditations for long periods can be conducive of melancholy." --qtd. in intro to Meditations Posts: 122 | From San Diego, CA, California, United States | Registered: Mar 2005
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