Just took my first Rifampin

Anyone have any advice? I have been dreading this one but from reading old forum posts as someone who hadn't yet tried Rifamipin, my analysis was that it can range from moderate to severe but that it is usually a necessary evil for those of us with bartonella and I have that and then some...

I have been sick with lyme and co for about 25 years, entered treatment about 5 years ago, I've had many improvements but still only about 50% of normal, main complaints remaining are sleep even with medication, fatigue, nausea, memory/cognitive, libido/hormone, histamine...

Well, I guess that's all for now. So this is "another day 1" for me, i'm sure I will be on here a lot more again. I feel it could be the "big one" that takes me out of the game but I'm trying to stay positive and realize there is probably a range of outcomes.

Kind regards and thanks for reading,

Doors12

Thank you Girlie! I hope your herxes reduce!

It's not really my LLMD's fault for not prescribing sooner but mainly due to personal reasons having to postpone treatments time and again. Right now I'm only on Alinia and herbals but will probably be adding doxy i am going to have to talk to my doctor

doors12

Hi I’m on week 8 of Rifampin and doing pretty well. I had a bad Herx 48 hours into starting it which included full body pain, headache and me falling dead asleep after work! I feel more stiff lately but I do think it’s helping me. Best of luck

Donjr said...
I have been delaying starting as long as I can, this one scares me. Are you pulsing? Hearts in pain are you pulsing? What dose should I do one a day for a few days then two etc. thanks

I took Rifampin with my previous LLND. - in 2014/2015

He told me it was okay to start off lower dose. I was taking minocycline with it.

I got some empty capsules...and poured approximately half out and filled an empty capsule.
So, I would take approximately 150 in the a.m. and 150 in the p.m. It may have been 140 and and 160 - I know it wasn't precise, but I was taking one full capsule a day....so I thought it would balance out. ( Instead of 300 twice daily.)
i did that for a week...and I was okay...so then I think I went to 150 a.m. and 300 pm for a week...
then to 300 twice daily.

I used a folded paper to pour the rifampin on to.

Well, so far I just took my 1/day 300mg night dose and I am doing very well. I was expecting significant herx around day 3 but so far, I actually have sleepiness as a symptom which I will take anytime over sleeplessness (which happened to me with houttunyia). I seem to have some stupor or mild vertigo which I haven't been able to pin down but I know I didn't feel capable of driving earlier today.

Hearts - as indicated above, I guess I missed the initial herx. I have been doing daily coffee enemas and I think that has helped somewhat. I am also (rough estimate) in actual treatment for 3+ years so that has to have helped my situation going in.

Donjr - I never pulse because my doctor doesn't believe it works. I don't consider myself educated enough on those things to have an opinion. When I was on Flagyl or Tinidazole I sure wished it was pulsed because those made me feel really lousy. I have been sick for over 20 years and am on day 4 of (PM dose only) 300 mg Rifampin and tolerating it well considering the things I've read about it over the last 5 years.

I will check back in. I am now considering adding my second (AM) dose in tomorrow, but I did find one post on here where someone sounded like me early on and had changed their tune towards the end of the week...

fingers crossed!

doors12

Great news thanks for update! Wishing u well and no issues!!!

doors12 said...
Hi all - back with an update - sorry for the delay!

So, on day 4 of only 300 mg once daily I had a full body pain/stiffness herx and I have continued to have mild-moderate herxing of the usual swollen lymph, tiredness, some joint pain and an occasional head pressure headache with some vertigo/confusion. I am currently on a twice daily dose (full dosing).

All in all, way better than I expected, although I am still often unable to drive and spending a lot of time in bed. Overall it is a lot less scary than what I thought based on reading things online and scientific articles. The herx is telling me that it is working, which has to be good.

Now for a question - I added in 200 mg of doxycycline this AM...any advice about what time to take the doxy relative to taking the Rifampin doses? It is too early to say but after this morning adding in doxy it seems that I might feel a little less strange but we will see.

Thank you!

I think Rifampin can lower levels of doxy in your blood - not sure if it's something to be concerned about though.
I usually take my abx fairly close together.

So today is your first twice daily dosing?