what have been people's experiences with oral rifampin? How was herx? How long were you on it? Was it helpful? thanks!
Posted by TheCrimeOfLyme (Member # 4019) on :
I was on rifampin 600 mg for three months for bartonella. I dont know about tulermia, and I do not *think* it treats lyme. I could be wrong.
But, the first month it was nothing but one big herx. After that, it was fine. It cleared up my head pressure and majority of my neck pain and headaches. I still use it to this day if I get a lyme headache that wont go away- though that is rare.
I had MAJOR lung symptoms while on it-hackign up stuff, etc. By the way you WILL pee orange- its normal.
Good luck, its a great drug. it crosses the blood brain barrier, gets up there where it needs to be.
Posted by kelmo (Member # 8797) on :
My daughter just started Rifampin. She was really sick the first day. We decided that she should go every other day the first week, then once a day, along with her zith.
I'm so glad you told us about your experience. My daughter has gained 80 pounds with this disease. Most of that appears to be an allergic reaction. She's one big puff.
If you gained weight, have you lost it as you improved?
Kelmo
Posted by Andie333 (Member # 7370) on :
focus,
I've been on rifampin for Bart since the beginning of the year. I had some really unusual symptoms kick up, so my holidays were ruined.
My LLMD said today we're going to start cutting back on my dosage a bit, because most of the worst symptoms have improved considerably.
Urine is orange, but that doesn't affect me too much. My headaches have diminished, some of my brain fog has lifted, my facial numbness is gone, as were what felt like weird tight bands wrapped around my ankles.
If you want to pm me, feel free. For me, this has been a really good antibiotic.
Andie
Posted by liz28 (Member # 4946) on :
I took it at low doses at first to ramp up, then took the regular dose for five months along with ketek. There were two seemingly endless six-week herxes. Since then, babesia has caused a lot of problems, but whenever I try rifampin to see if this may really be a bartonella relapse, the rifampin has no effect. When I first started on rifampin, just one capsule had an earthquake effect.
Posted by seibertneurolyme (Member # 6416) on :
I like Liz's description -- an earthquake effect. That is what happened to hubby also. His tremors increased from 20% of the time to about 80% of the time. Also had increased seizure-like episodes.
He just couldn't take this med. Had to stop after 20 pills -- that was over about 30 days with a break of several days in the middle.
Hope you have better luck -- he was taking this for clinically diagnosed bartonella.
Just the few pills he took really improved his thinking -- initially talked a mile a minute and then finally calmed down after a month or so -- brain is the clearest it has been in 5 years since his illness started.
Do suggest you start slow and ramp up -- maybe even 1/2 pill per day.
Bea Seibert
Posted by focusonsurvival (Member # 9124) on :
wow. It really sounds like people have had good success with this med. I started it today and already notice something happening - mild herxing - weird tightness and pain in legs. Interesting. I hope it works as well for me as for most others. Peace and thanks, M See you all at the rally!!!!!
Posted by micul (Member # 6314) on :
Hey kelmo, Rifamin should not be pulsed like that. It's best taken everyday at the same time on an empty stomach. Food makes a difference. 1 hr before, or 2 hrs after a meal. See Bartonella buddies for more info. Did your Dr say that every other day was ok?
Posted by VEE VEE (Member # 5060) on :
I had trouble with Rifampin. My spleen got enlarged while on it. Keep detoxing the best as you can.
When I took my dose I had to go to bed. Dr. told me to take it at night so I did but could only handle about one months worth.
I had already done 4 months of levaquin bout 1 1/2 years ago. Got a terrible herx from that. Still have Bart so 6 months ago did levaquin again and it affected my ligaments so when to rifampin.
Now on nothing but homeopathics. I am feeling better on homeopaths.