posted
Just talked to LLMD today and we are switching things up a bit... Rifampin is now going in the cocktail.
Anyone have advice for this. I'm kinda scared since I feel most of my symptoms are bart..... Is it going to hit hard?? who knows! Our bodies react so differently.....
zoiks.
Any thoughts out there?
Posts: 798 | From Cincinnati, OH | Registered: Jul 2016
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Jordana
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posted
You know my fatal crash of two weeks ago came on mino and rifampin. But I really felt nothing different when I started it and I think it was the combination, especially with the mino, that did it, if not just the mino.
I had massive side effects but I'm not sure it was from the rifampin.
Posts: 2057 | From Florida | Registered: Feb 2015
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posted
I started it a few weeks ago. Lots of improvement so far. Started at half dose and ramped up after a few days.
Bart does not usually cause a strong herx but sometimes Rifampin hits other things and it can be quite intense.
Posts: 184 | From CT | Registered: Aug 2006
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TF
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Member # 14183
posted
Its going to make your pee red. Not kinda red, not sorta red, red red :-D Its pretty odd looking if youre not used to it. Other than that, I tolerated it well.
Posts: 173 | From USA | Registered: Aug 2015
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daystar1952
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Has anyone had diarrhea as a herx or side effect with Rifampin? Not diarrhea due to bacterial or yeast overgrowth but diarrhea can be an expected side effect I read somewhere.
Posts: 1176 | Registered: Oct 2002
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me
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posted
I didn't have diarrhea but my urine was orangeish and had a sharp odor. My friend had the same two things happen .Drink plenty of water.
-------------------- Just sharing my experiences, opinions, and what I've read and learned. Not medical advice. Posts: 1431 | From USA | Registered: Mar 2015
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posted
Oh, thank you everyone. I checked out for a few days. My birthday was last week and I sorta mentally checked out of 'lyme' for a while.
It just felt like too much to face ANOTHER birthday on the couch trying to be happy for my children.
Actually, It was a pretty good few days around my birthday, so maybe that was a tender mercy.
I started rifampin half dose and have now ramped up. I've taken full dose for 3 days now. . . . So far things aren't horrible.
I can tell I upped the dose, but doing o.k.. Hoping to see some good gains!
Thank you everyone.
Posts: 798 | From Cincinnati, OH | Registered: Jul 2016
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me
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posted
Happy belated bday HW88!
-------------------- Just sharing my experiences, opinions, and what I've read and learned. Not medical advice. Posts: 1431 | From USA | Registered: Mar 2015
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posted
thank you me!!
Posts: 798 | From Cincinnati, OH | Registered: Jul 2016
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bluelyme
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posted
Happy birthday ..keep us posted ..godspeed
-------------------- Blue Posts: 1539 | From southwest | Registered: Dec 2015
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me
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posted
How is the rifampin treating you, HW88?
-------------------- Just sharing my experiences, opinions, and what I've read and learned. Not medical advice. Posts: 1431 | From USA | Registered: Mar 2015
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so I sorta feel like a bit of a wreck. Not so bad that I feel I need to stop, but the couch and I have been very good friends this week.
My head especially... buzzy, dizzy, achey. And my eyes. eyes hurt to look at things. (these are both symptoms that I have, so just worse).
A bit of an emotional roller coaster. . .
I'm about a week into full dose, so I'm hoping I will start going in the 'good' direction soon!
This has been one of my longer 'downs'. Usually when I start new meds, I can feel it for about 3 days and then start to pull out of it. SOOO,. . . hoping to come up for air soon!
Thanks everyone. You're the best!
Posts: 798 | From Cincinnati, OH | Registered: Jul 2016
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me
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posted
HW88, Based on my experience with rifampin, what you are going through seems"normal," meaning as normal as making sense of all of this that doesn't make sense can be.
For about ten days to two weeks, rifampin made me feel very weighted down and just extra icky. I hated it. That is the hate part. It hit the Bartonella and also made me go on an emotional roller coaster. Crying, extra depressed, etc.
After being on it for a while, it brought the neuropsychiatric symptoms down. That is the love part. For the first time in years, years, years, I was able to get off one of my psych meds and reduce another. That is unheard of for me.
It was years of adding psych meds to try and balance me out, but the bacterial load in my brain was so high, it seemed no amount of psych meds helped until after my rollercoaster ride with rifampin and other treatments.
So, I hope that answers your question as to why I have a love/hate relationship with rifampin.
Hang in there. I hope you are able to watch some good movies or something to try and distract you while making friends with your couch. Hugs.
-------------------- Just sharing my experiences, opinions, and what I've read and learned. Not medical advice. Posts: 1431 | From USA | Registered: Mar 2015
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posted
Me, Weighted down is a good way to describe it... Just kind of a BLAH.
Posts: 798 | From Cincinnati, OH | Registered: Jul 2016
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me
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posted
Yep, an extreme weighted down depressing BLAH. I don't know how else to describe it. It was almost like looking at myself from the outside in but feeling every moment of the experience. It was an odd kind of almost indescribable feeling if that makes sense?
-------------------- Just sharing my experiences, opinions, and what I've read and learned. Not medical advice. Posts: 1431 | From USA | Registered: Mar 2015
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bluelyme
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posted
Having trouble with it ..lead legs ...like a person without arms i cannot hang .. though i must !? Arrg...is it ok to pulse this stuff? My poor liver
-------------------- Blue Posts: 1539 | From southwest | Registered: Dec 2015
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
HW88, keep us posted.
"Expect a herx-like reaction during the first week or so; then significant progress often occurs during the second or third week on rifampin." (from link I posted above)
Hope this is your experience!
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
Does anyone know if you can pulse rifampin? I've been looking up stuff and it seems to be a no no. Is that right?
Anyone pulse rifampin out there? I'm just trying to figure out my stomach, but don't want to stop if it's not good to do so... blah.
Posts: 798 | From Cincinnati, OH | Registered: Jul 2016
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bluelyme
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Ya hw88 i asked thst on hw ..and some say its perstance and others say its resistance ..intersting conversation .but i :ouldnt get answer if dr j pulsed it or rifabutin .seems like give it hell ..but if its in cells and abx only hits when its out then ..idk .what are you pairing it with ?
..also So upping dose soon ..600mg 1x or 300mg 2x ???
-------------------- Blue Posts: 1539 | From southwest | Registered: Dec 2015
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posted
I've started and stopped rifampin a good bit. Off for three days then right back on after a round of coartem. Sometimes one month on, one month off in rotation with something else. I haven't seemed to have any issues with stopping and restarting.
I was really scared of rifampin at first because of the intensity and number of my Bart sx. It ended up being much easier for me than I'd expected.
Sorry to hear about your stomach pain. It might be helpful if only for piece of mind if you are able to get your liver enzymes checked. Bart and/or Bart die off is also notorious for causing gastric sx/pain.
Posts: 474 | From US | Registered: May 2014
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bluelyme
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Gz ..did you have much gains on rifampin? Did you feel it was still effective when you revisited it ? What did you pair it with?
-------------------- Blue Posts: 1539 | From southwest | Registered: Dec 2015
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posted
Rifampin did quell my Bart sx over time. Before the rifampin I did a six week round of cipro which gave me some really good gains, but also left me with Achilles tendon damage that isn't completely healed after 1 year already.
I had very little herxing with the rifampin, some shin and foot pain. Not much in the way of emotional stuff, which is what I was mostly scared of. Lots of improvement with neuroscience/psych sx over time.
I did a bunch of coartem rounds, stopping all other meds while on it. The first couple days back on the rest of meds were a little bumpy, especially after riding coartem haha. I don't feel that stopping/starting changed the effectiveness of the rifampin.
Posts: 474 | From US | Registered: May 2014
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posted
So, I've done o.k. with 1/2 dose rifampin. LLMD said that's ok. I will probably try to go back up again and see what happens.
I've been experiencing a rise in anxiety and insomnia. Waiting till period is over (that is always the worst time... sorry tmi) and will try again. I will bump it to 300mg 2x a day.
I'm also on Ceftin and Biaxin.
Hoping for some good gains on the emotional side of life. Posts: 798 | From Cincinnati, OH | Registered: Jul 2016
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