Rifampin - is this normal

nefferdun,

I'm sorry you're struggling like that. You think that maybe you have too much die off going on? Can you cut back on the HH capsules to see if things improve?

nefferdun,

I'm no doctor but that's what I would do to see if there was too much die off. Try to get a few detox baths in too. It helps get some of the toxins out.

I don't know how long you've felt this way but I, myself have herxed for two weeks straight before. I know you want to kill the bacteria so that you can feel better but too much die off is not good either. Our bodies need a break sometimes.

I hope you figure it out and things get better soon for you.

Thanks radfaraf, I take these warning much more seriously after having gottne the "rare" side effect of tendonitis from levaquin, which I still am not over - had some aching last night.

I quit the rifampin because my arm was hurting so bad I was afraid of bringing the tendonitis back on.
I cut down the HH-2 from 10 a day to 8. I am still taking Rapid Response which is a joint supplement that can kill bacteria - who knows what was doing what. I will wait a couple of day to see.

I have read that bartonella can come back on strong in a matter of days so it is scary.

I had my one and only herx reaction with Doxy and Rifampin. It sounds like you might be experiencing a severe herx reaction.... But I'd call my dr. before continuing. No point in making other things go wrong just to stay on a certain abx. Let us know what happens.

saxmar, hi, i was wondering if you could expand on your bartonella treatment - what did you do instead of Rifampin? I am having similar problem - it made me so sick that i was in serious trouble, couldn't get out of bed for several days, i couldn't even talk or lift up i was so weak, my mom had to feed me bc i couldn't even lift up to drink, it was crazy and scary. it has finally cleared after 4 days off of it, and i wasn't even on a full dose. now my llmd says no more rifampin for me, ever. I think my labs are looking bad - not liver thankfully, but platelets, white blood cells, nutrifils(?). I'm so depressed about not being able to take rifampin now. It was my hope for getting rid of this bartonella. i have been in treatment for so long for lyme and babesia, i am scared i won't get better unless i get rid of the bartonella. It seems like rifampin is the answer for everyone else who has bartonella. I was only on it for 10 days but felt that it was working because all of my foot pain and nerve pain got worse on about day 6. But then the extreme weakness and fever hit and just got worse and worse. My llmd plans to put me on levaquin i think(?) and i'm scared because i've heard bad things about it. If you could share anything about your treatment i would greatly appreciate it, or if there is anyone else out there who couldn't take rifampin... Thanks.

IMy Herxes and "toxic buildup days" have meningitis-type symptoms (severe headaches, neck pain, light sensitivity, etc), sometimes also constipation.

Ive been on Rifampin for almost a year and Ive got very good things to say about it. Once you get over your Herxing, it helps to stabilize your symptoms. The first month I couldnt handle any more than 300mg, once per day, but now Im on 300mg twice daily with no issues. My LLMD put me on this specifically for Bartonella (not my Lyme). Its so effective for me, that my symptoms relapse when Im off of it.

What Ive found with all of these drugs is that you will initially go through different amounts of Herxing, but this is a sign that the drug IS WORKING. The more severe the Herx the more effective the drug usually (assuming of course its not an allergic reaction of course).

Thanks for your post asada13:) I'm really glad to hear that you recovered from the levaquin issues. It sounds like your rifampin herxes are bad but manageable, so that's good. They sound exactly like mine were, except mine just wouldn't clear at all. But now that i've been off the rifampin for i guess a week now, it has cleared and i feel about 75% better. I hope you will post again in a little while to update on how things go with the rifampin.

I might have come across wrong about my dr - i think she is supportive but cautious - i'm more mad at my body! Thanks about the turmeric and epsom salt baths. I tried the baths once before, but they seemed to make me worse, it was like a mini-seizure when I got out of the bathtub. It made my brain shake and I couldn't move, but it wasn't a full-on seizure. The llmd said that could happen from staying in the tub for too long/at too hot a temperature, which could conceivably cause more herxing. Does this sound familiar to anyone? Maybe i need to be brave and try the baths again at a lower temperature.

Hope you are feeling better soon too:)

Yes, it's weird because nobody has a clue what is up with me. It can be very isolating. Regarding your question about protocols, I've been on a few different regimens over the past year - started off going after lyme with i can't even remember what - mainly doxycycline but also some other things... then focused on babesia (which was the scariest one so far, to me - it would feel like i really couldn't breathe - or my heart was going to just stop working). So i'm really happy that seems to be better now, praying that never comes back. What about you? I don't see a lot of people posting that many details and it makes me wonder. My primary care physician (non-llmd) is weirdly against all of it. It makes me feel like i need to hide. Like this is all some kind of crazy anxiety. Like I just happened to start having the flu and infections constantly, and random nerve pain, and supposed "anxiety" causing my heart to go crazy for no reason. I've heard awful stories about llmd's getting into trouble. Anyway, thanks for the info on rifampin pulsing. I wonder if that's part of why my llmd said no more rifampin.

I started rifampin with azithromycin last week for lyme. I had the most terrible brain fog, headaches like pressure and shocks back of my skull, burning pain on my back and chest, feeling of air hunger, weird sensations on the bottom of my right foot, lound tinnitus, sensitivity to sound, neck stiffness and pain, anger and rage, before I started the medication.

for about 4 days after starting this, I felt terrible like a herx reaction. aches, migrating pain shooting in my left arm and shoulder, just felt bad. then after 4 or 5 days it is like all of a sudden the brain fog lifted which was shocking cause I have had this feeling for so long, the headaches decreased and my neck did not feel stiff anymore, I felt calmer and did not feel so prone to anger, my level of concentration and memory improved, it felt like I could breathe easier. but the ringing in my ears, and the burning on my skin has not improved. yet.

I truly believe I the medication is treating enceplalopthy because I have every indication of having swelling in my brain and spine. it must be killing bartonella or babesia.

I have been on rifampin for month and minocycline for about two weeks now. I really don't have much herxing as far as I can tell. I don't know if that is good or bad. :( I did have an awful headache and floaters in my right eye last thursday and a week prior I had a weird rash on my neck maybe that was a herx I don't know. We are all different and react differently to these medications so you can't judge from one person's experience on an antibiotic how you will react and tolerate to the same antibiotic. I sometimes wonder if rifampin is helping at all. I have started drinking dandelion root tea to help my liver detox. I feel like I have a cold and feel sick today maybe this is a herx. I also had pain in my right lung everytime I inhaled today which is now gone. It is weird how these pains and symptoms are fleeting. They are here one minute and gone the next sometimes.

mumma - I didnt recall any kind of Herx on the Rifampin either. But what I do recall is the tremendous flareups I had when they took me off of it.

For me, thats my strongest indication Rifampin was helping (well that and all my skins ailments are gone)