Rifampin - is this normal

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nefferdun
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Date Joined Feb 2008
Total Posts : 900
   Posted 9/14/2009 8:18 AM (GMT -6)   
I got tendonitis from levaquin and was then put on rifampin which at that time made me dizzy. For five months I was using HH capsules as I could not tolerate the abx. Then my symptoms got much worse. I am still not sure if this is not just a herx as I upped the dose. Anyway I decided to try the rifampin again at half dose which I have taken for 4 days, still remaining on the HH capsules at a high dose. The symptoms continue to worsen with headache every night, hot flashes, need to urinate frequently and pain in shins. But last night my back seized up so bad I could not stand. Then this morning the arm with tendonitis was very painful in the muscle. Scary. Don't want to pull any more tendons! Muscle pain is one of the side effects of rifampin. What kind of herxing do you guys get with rifampin? Please explain bartonella herx versus getting worse or drug reaction- how do I tell the difference? I don't know what to think and my doctor was of no use as he told me my pain last time was not related to levaquin and I ended up with a damaged rotator cuff.

CajunGrl
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Date Joined Mar 2009
Total Posts : 4717
   Posted 9/14/2009 2:19 PM (GMT -6)   
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?
**You never know how STRONG you are....until being STRONG is the ONLY choice you have**

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nefferdun
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Date Joined Feb 2008
Total Posts : 900
   Posted 9/14/2009 2:36 PM (GMT -6)   
I hope that is it. My brain is so foggy that it is very hard to clarify what is what. I can't remember what the heck I am doing sometimes. I will quit the rifampin and cut back on the hh for a week to see what happens.

But that brings up my biggest question . . . . Do you have to feel the pain to get rid of the bacteria? I should be herxing, right? Maybe just not so badly for so long? If it goes on for a long time, like this one has, then might it be that the HH is not working anymore? Maybe I need to switch to something else.

I guess if I cut back and feel better, that will answer my question. . . . that the HH is working and I was herxing. If I had half a brain left, I would have figured that out!
Thanks so much Cajungirl. This is like one of those tragic comedies.

CajunGrl
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Date Joined Mar 2009
Total Posts : 4717
   Posted 9/14/2009 2:46 PM (GMT -6)   
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.
**You never know how STRONG you are....until being STRONG is the ONLY choice you have**

Co-Moderator Lyme Disease Forum


radfaraf
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Date Joined Jul 2009
Total Posts : 7
   Posted 9/14/2009 5:40 PM (GMT -6)   
Watch out with rifampin, Starting and stopping rifampin is dangerous to the kidney's. There are all sorts of journal articles about kidney failure related to this. Some of the references are really bizarre, like people who took it once a year ago and upon first dosage next time experienced kidney issues.

If you look up "Acute renal failure rifampin" on pubmed and google you can find some examples.

nefferdun
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Date Joined Feb 2008
Total Posts : 900
   Posted 9/15/2009 9:50 AM (GMT -6)   
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.

saxmar
Veteran Member


Date Joined Feb 2007
Total Posts : 670
   Posted 9/22/2009 1:39 PM (GMT -6)   
nefferdun
 
I could not tolerate Rifampin at any dose level.
 
I've taken other ABX at high doses with little or no adverse reactions that others could not tolerate.
 
I convinced my LLMD to take me off of Rifampin.
 
I am not a doctor. I just wanted to share my Rifampin experience.
 
saxmar

JELAINEP
Veteran Member


Date Joined Sep 2007
Total Posts : 2017
   Posted 9/22/2009 6:09 PM (GMT -6)   
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.
Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it's the only thing that ever has.  - Margaret Meade
10/01- Igenex and CDC LD positive
Rx's: Wellbutrin 300, Paxil 60, Xanax 5, Acidophilus, Invanz IV, possibly Gammaglobulin, Flagyl, HBOT  
 


nefferdun
Veteran Member


Date Joined Feb 2008
Total Posts : 900
   Posted 9/22/2009 6:59 PM (GMT -6)   
I quit the Rifampin because my arm was hurting so badly. A week later and the muscle still aches but the day I decided to quit using it, I could not lift my arm.
I had raised my HH capsules dosage which was causing me to herx. I also started a supplement called Rapid Response which is for joints, ligaments etc but is also an immune stimulant. I did not know that it kills bacteria and fungus etc. So I was herxing from that too. I cut back the HH and stopped the RR for a day or so. Feel much better now. I slept well last night - no headache, hot flashes greatly diminished, shins not too painful.
Thanks for asking about me.
Bev

eliz3333
New Member


Date Joined Oct 2013
Total Posts : 9
   Posted 10/11/2013 11:55 PM (GMT -6)   
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.

Asada13
Regular Member


Date Joined Oct 2013
Total Posts : 145
   Posted 10/12/2013 12:45 PM (GMT -6)   
Hey Nefferdun,

Was diagnosed with Bartonella 2 months ago, and started treatment 2 weeks ago. I was also on levaquin which made my right arm completely numb and hurt like hell! Couldn't close my hand. Got off and now I'm on rifampin and azithromycin. Also experiencing insane body aches, hot flashes, numbness and tingling in my wrists, difficulty with urinating, migranes, EXTREME brain fog, the list goes on. I was under the impression that this was herxing, as it comes and goes and is not so bad in the morning, but gets very bad at night. I am currently using a liver detox with milk thistle and dandelion, and taking nightly epsom salt baths. It's amazing how quickly the symptoms go away with the bath! Oh, also, check out turmeric tea. It's great for inflammation and I really like the taste! I'm sorry to hear you're in so much pain. If it doesn't get any better soon, I would talk to your Dr. Sounds like your Dr isn't that supportive, so maybe try and find another LLMD?

Hope you feel better soon!

Post Edited (Asada13) : 10/12/2013 12:52:29 PM (GMT-6)


vcast
Regular Member


Date Joined Apr 2013
Total Posts : 416
   Posted 10/12/2013 6:57 PM (GMT -6)   
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).

Asada13
Regular Member


Date Joined Oct 2013
Total Posts : 145
   Posted 10/12/2013 7:46 PM (GMT -6)   
Vcast, can you tell us newbies what good things you can say about it? What symptoms have been alleviated? I'm looking at super long term treatment, so a little hope goes a long way :)

eliz3333
New Member


Date Joined Oct 2013
Total Posts : 9
   Posted 10/13/2013 11:57 AM (GMT -6)   
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:)

Asada13
Regular Member


Date Joined Oct 2013
Total Posts : 145
   Posted 10/13/2013 10:47 PM (GMT -6)   
Hey Eliz,
I have heard that hot baths cause herxing! Apparently those little buggers don't like heat too much :) Maybe you could gradually increase the heat so as not to trigger one?

Happy to know you're doing much better off the rifampin. Just an FYI, I read an article that said if you pulse rifampin it can cause renal failure, so if you ever decide to go back on it, you may want to look into that Are you taking anything else? My llmd isn't very informative when it comes to treatment protocols, so I like to hear what everyone else is taking/ experiencing :)


I'm soooo glad I found this forum. It can be a little lonely not having anyone else I know go through this. Having people to talk to is such a relief! Makes me feel like I'm not looney tunes lol.

Thanks for your positive words :)

eliz3333
New Member


Date Joined Oct 2013
Total Posts : 9
   Posted 10/15/2013 9:59 AM (GMT -6)   
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.

vcast
Regular Member


Date Joined Apr 2013
Total Posts : 416
   Posted Yesterday 10:39 PM (GMT -6)   
Asada13 -

Rifampin has helped with my weird skin issues I would have. Sometimes these were rashes, sometimes just acne in odd places that I never get acnes. Sometimes Id get these strange hard pimple-size nodes under my skin. I never get these now.

Rifampin also helped with my mood swings, my anger issues and extreme anxiety. I think it also helped with my sleeping disorders and nightmares (it was this or my other ABXs Im on).

I also believe Rifampin reduced the swelling and pain in my Lymph nodes under my neck as well.

mystery1
Veteran Member


Date Joined Mar 2013
Total Posts : 514
   Posted Today 1:26 PM (GMT -6)   
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.
Lyme disease diagnosed October 2013. Suspect has illness for 15 years. misdiagnosed with fibromyalgia, bipolar disorder, anxiety disorder, you name it. spent 1 year slowly titrating off klonopin after over 15 yr addiction and still in withdrawal. currently on rifampin, azithromycin, antifungals, and supplements.

Healing98
Veteran Member


Date Joined Jul 2013
Total Posts : 1222
   Posted Today 5:55 PM (GMT -6)   
Glad to have found this post. Tomorrow I am seeing my LLMD for symptoms that I am sure are bartonella. I am suffering from severe neck pain, headaches, brain inflammation, brain fog, retinal issues, dry eye, sharp eye pain, dry mouth, trouble lifting my right arm (like it goes numb). Pain in my wrists, my fingers, can't fully close my right hand, brain fog, miss-spoken words, loss of short term memory, pain in the bottom of my foot, pain in my joints and face muscles that sometimes feels like they go numb. I also wake up gasping for air at night and have constant muscle and nerve twitches.

I have been fighting Lyme with Amoxycillin and Clarithromycin for 3 months. Many of my symptoms disappeared with the above antibiotics at about the 6th week but I feel that as I got rid of the Lyme, Bartonella stepped in and suddenly I had all of these new symptoms in the last few weeks.

Doxy is supposed to kill bartonella. Does anyone here know why people who fight Lyme with Doxy don't seem to kill the bartonella with it as well? Clarithromycin is also supposed to be good at killing bartonella, however, it hasn't done anything for my bartonella infection.

Has anyone here had success in killing bartonella permanently? If so, for how long were you infected?

mumma
Regular Member


Date Joined Dec 2012
Total Posts : 169
   Posted Today 6:08 PM (GMT -6)   
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.
CD-57 came back at a very low "16" in November of 2012
Blood work from Igenex came back negative in July 2013 with positive bands on IgM for 41 and 66 and IND on 34 and 83-93 and then IgG postive on 34 and IND on 41
have positive for mycoplasma pneumonia,
ANA positive and speckled 1:320 LUPUS??? September 2013
trying rifampin 300mg 2x a day, minocycline 50mg 4 x a day
herbals as well

Shelly71
Regular Member


Date Joined Sep 2013
Total Posts : 373
   Posted Today 8:38 PM (GMT -6)   
My thoughts and prayers go out to everyone in this terrible battle against borrelia & co.

If you would have told me a few months ago that I would be consumed with issues like herxing & detoxing, herbs & supplements, bacteria and coinfections, symptoms and reactions, I never would have believed it.

And now, these issues (plus some), are what I eat, sleep & breath.

May we all find healing & peace....soon.
My unknown future is in the hands of an all knowing God

vcast
Regular Member


Date Joined Apr 2013
Total Posts : 416
   Posted Today 9:07 PM (GMT -6)   
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)

Shelly71
Regular Member


Date Joined Sep 2013
Total Posts : 373
   Posted 10/22/2013 7:51 AM (GMT -6)   
Can I ask what your skin ailments were?
My unknown future is in the hands of an all knowing God
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