So after 8 months on zith where i made some good progress but struggled with headaches(an understatment) and stamina issues my LLMD and I agree today it was time for a change.
We had an excellent meeting today and i really feel like we are partners by the way. i guess 17 months together will do that.
so we keep Biaxin(my staple basically since day 1) and adding Rifampin 300mg.
Anything anyone can share of their experiences on this drug would be helpful.
Keeping the Faith,
Dave
Posted by lymeinhell (Member # 4622) on :
Buy some extra toilet seats, as Rifampin turns everything orange and it STAINS.
I got a lot of buzzy feelings at first, both in my legs and brain. My skin caught fire after the first week (or 5 days or so), so I had to back off to let the herxing subside, and restart at baby doses. Seems to be common, so I would suggest ramping up slowly (dump some of the capsule out and slowly work up).
It's been said that Rifampin is a two-fer - that it gets Lyme and Bart. Worked for me - wishing you the same.
Posted by kitty9309 (Member # 19945) on :
I am just getting ready to finish Rifampin, Dave.
It did help me.
The first dose made me as dizzy as I was at the beginning of all this. Maybe take the first dose when you can stay home, though I am sure this does not happen to everyone and maybe it was a herx reaction???
I also had the above experience of a skin reaction 5 days into my first attempt. The seccond try a few months later gave me no reaction, including the dizziness.
Good luck.
Posted by DaveNJ (Member # 17362) on :
sounds like some more fun and games coming my way...truth is i hope i herx like hell...i feel like i am getting close to finishing this off...good advice BTW(i'll start on Saturday)
Posted by canefan17 (Member # 22149) on :
DaveNJ,
Love the attitude. Welcome in those herxes... they are markers for recovery!
I get frustrated when I DON'T herx.
Posted by Pam08 (Member # 19203) on :
From what I have seen on here it looks best to start really slow and work up to the full dose.
I just started it yesterday myself. My full dose will end up being 600mg but I started yesterday with just 150mg. I just took a 300mg pill and dumped half of it out. I put the half I dumped out into an empty capsule so I wouldn't waste it. I am taking that one today.
After one dose I can't really say how I will react to it. I think it did give me a bit more dizziness then usual. I also didn't sleep too well last night (didn't feel well) but I am not sure if that was from the rifampin or me slightly over doing things yesterday.
So the verdict is still out for me. I know a lot of people have had a hard time with it though so I am glad that I am starting slow.
Good luck! Pam :-)
Posted by DaveNJ (Member # 17362) on :
Cane,
Thanks..i always attack head on....new video coming out this weekend...i have something up my sleeve...
Dave
Posted by Aimee (Member # 20946) on :
Rifampin has been the wonder worker for me. It has gotten my headaches to a tolerable level and they continue to improve, slow but steady.
I started with 300 mg for one week then upped to 600 mg. I was okay for the first week but once I jumped up the dose I was pretty much flattened in the bed for a week with fatigue and headaches.
Dr. S in his book says to expect this and then to see good improvement after week 3. This is what happened to me. I hope you can experience the same.
I started Rifampin early in my treatment so maybe that is why it flattened me for a week - maybe you have a lower bug load and you will do better.
Hoping this is what pushes you into remission.
Aimee
Posted by hezzer926 (Member # 17902) on :
Rifampin really got the bartonella sinus headaches to dissipate for me--im still on it.. and feel it really helps
Posted by Haley (Member # 22008) on :
Rifampin is an excellent medicine. I started out with 600 mg and after the 2nd week I almost went to ER with what felt like a heart attack.
I may try again and ramp up slowly. I believe after those 2 weeks many of my symptoms were better.
Posted by Nicole_Denise (Member # 20620) on :
Hey Dave,
I started on Biaxin and Bactrim for bart, but got nowhere. I switched to Bactrim and Rifampin, and 6 months later I am almost done my treatment for Bart. I herxed for nearly two months straight (and felt worse than I ever have during that time), but it was worth it.
Posted by DaveNJ (Member # 17362) on :
Wow...you guys made my day with some good posts...i needed to hear this....of course i went searching and all i could find were horror stories....but my bug load is low but like hezzer i have these major headaches...i am 17 months in its just that last time i chnaged drugs was June of last year and it took 5 months to crawl out of the hole....