MariaA
Frequent Contributor (1K+ posts)
Member # 9128
posted
I was prescribed rifampin but my doctor warned me to not 'pulse' it- he says starting and stopping can cometimes cause immune system issues (I assume he meant autoimmune).
can anyone shed more light on this? I'm worried about what to do if the herx is unbearable- I'm trying to work right now and if a new drug causes me problems I usually stop for a day or two.
With rifampin, can I work up to the dosage? I can't recall offhand what dosage I got but it's pretty standard from what I've seen here. I'm also on Septra and will be adding bicillin or doxycycline (I know there's a bit of an interaction with rifampin) and possibly Flagyl later.
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Jill E.
Frequent Contributor (1K+ posts)
Member # 9121
posted
I'm so sensitive, and have such bad Bart, I had to ramp up slowly from a pediatric dose of Rifampin - and I herxed horribly on that! I know the LLMDs hate it when I do it, but I had no choice. However, I may now have resistant Bartonella so maybe that wasn't so smart of me (although I did it with my LLMDs permission due to my being so sensitive).
The Physician's Desk Reference (I think that was the source, I'm doing this from memory) warns about not starting and stopping Rifampin because it can cause a flu-like syndrome. But I think they mean more like stopping for two weeks and then restarting. I had to skip a dose or day now and then and it didn't bother me. I work, too, so I understand the issue.
One LLMD I consulted with was thinking of putting me back on Rifampin after being off a couple years because I'm still positive, so I think the on-off issue might be more like off a week, then back on, versus missing a day, or going off a year and then back on.
Jill
-------------------- If laughter is the best medicine, why hasn't stand-up comedy cured me? Posts: 1773 | From San Diego | Registered: Apr 2006
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MariaA
Frequent Contributor (1K+ posts)
Member # 9128
posted
thank you, that was very helpful!
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posted
My LLMD has me pulsing rifampin (and all my drugs) M, W, F. He thinks it is okay obviously. I don't have any answers, but it is what I am doing and he is a well respected docotr.
-------------------- Severe neurological problems. Probably sick for years. Became chronically sick in Aug 2007. Undiagnosed for another 15 months. Started treatment for lyme and bart Sept. 2008. Improving, but very slowly. Posts: 515 | From washington dc | Registered: Aug 2008
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sammy
Frequent Contributor (5K+ posts)
Member # 13952
posted
Be sure to take your Rifampin with a small amount of food until you get used to it.
I did not know this when I got started, had severe dizziness, nausea, and vomiting. My LLMD recommended that I take it with food and all that went away. After about a month I was able to tolerate taking it on an empty stomach.
I felt better after starting the Rifampin and did not experience a noticeable herx. You might be the same.
Good luck.
Posts: 5237 | From here | Registered: Nov 2007
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MariaA
Frequent Contributor (1K+ posts)
Member # 9128
posted
Is anyone who's on lower doses taking rifampin just once a day, or does anyone know the science behind how fast it builds up or is excreted or whatever?
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sammy
Frequent Contributor (5K+ posts)
Member # 13952
posted
I take it once a day. It is easier for me to take it that way because Rifampin interacts with so many other medications. It can be prescribed as a once or twice a day dose.
Posts: 5237 | From here | Registered: Nov 2007
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MariaA
Frequent Contributor (1K+ posts)
Member # 9128
posted
which dose are you on once a day and how much other stuff are you on?
I'm really trying to experiment with just taking some meds at night- whatever woozyness I feel from the herx isn't noticable if I'm asleep. Of course it doesn't make it easy to wake up, but that's better than losing a few hours to dizzy/woozy/disoriented feeling that several different antibiotics seem to temporarily bring on.
-------------------- Symptom Free!!! Thank you all!!!!
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