Jordana
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posted
I know everyone is different, but is there anything I need to watch out for taking this drug?
Posts: 2057 | From Florida | Registered: Feb 2015
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Besides the herxing, you need to regularly keep an eye on liver enzymes. They can elevate quickly and early in treatment for some people.
My liver enzymes have stayed in range throughout my tx, but they have been lower since I've been on rifampin. I think they went up with my bart or other bacterial load. I was scared of it at first but I tolerate it really well, along with my other daily abx.
Am I remembering correctly, shouldn't it be combined with other abx for treating bart? Not a suggestion but something to consider. If you are doing this solo you ought to get your labs before commencing and then shortly into tx, then regularly thereafter.
Posts: 474 | From US | Registered: May 2014
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Jordana
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Thanks for your helpful answer, gz. I am combining this with mino per Dr. R, WA for Bart. I've taken really high dose mino before with no problems but rifampin is brand new to me. Just want to be able to tell the difference between adverse events and herxes, etc.
I am self-treating though, since I no longer have a Lyme doc in the area.
Posts: 2057 | From Florida | Registered: Feb 2015
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Judie
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I lost my sense of hearing and touch on it. It turns out my body can't process it and I just kept getting toxic on it.
The senses returned when I stopped it.
Posts: 2839 | From California | Registered: Jul 2012
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I took it along with doxy and Rocephin. It didn't really bother me. I'm not sure it helped much either though.
Posts: 748 | From Texas | Registered: Feb 2015
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me
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posted
Nasty herxes to begin with. but it gets better over time.
-------------------- 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
If you've got bart PREPARE for the HERX! It works.
Posts: 70 | From New Jersey | Registered: Aug 2013
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WPinVA
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It helped me a lot. But it made me very sleepy for the first week or so.
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ukcarry
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I had bad muscle pains initially and was told to start again at half dose after a week's gap, which enabled me eventually to tolerate it up to a point.
Don't be alarmed if you get orange wee or orange tears: i didn't, but some people do,
Posts: 1647 | From UK | Registered: Nov 2008
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Aside from a 2 day herx, it never caused me any issues. When I added Zithromax to it, the herx was much worse but got over it after a week or two and currently on 600mgs Rifampin/1,000mgs Zithro.
Posts: 85 | From Northeast | Registered: Mar 2011
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Jordana
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Thanks, I'm pretty scared of this drug and I've almost decided not to take it. So tired of being sick and getting sicker on abx.
Posts: 2057 | From Florida | Registered: Feb 2015
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me
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Even though the herxes were bad at first, it helped me a lot.
-------------------- 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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Tincup
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posted
UKcarry said... "Don't be alarmed if you get orange wee...."
Good warning! Thanks so much for sharing.
Of course, the language is a bit technical for those not versed in medicine, but I think most will be able to understand it.
lpkayak
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posted
it saved me yrs ago but was hard to get started on back then i could crumble the tabs but now i hav capsules back then my horrible long term foot pain went away and never came back til this sprimg when i got bit again
this time i am taking with doxy and the first time i took both together i had coma like 4-6 hr sleep then kind of sleepy fa week..then just felt better
foot pain gone again
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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Don't be alarmed if you get orange wee or orange tears: i didn't, but some people do, [/qb]
- Be sure not to wear contacts.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Catgirl
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posted
Loved it (I took it with doxy--great combo).
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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ukcarry
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Thanks for the good laugh that gave me, Tincup!
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reddish urine (can even color your tears and contact lenses!) - supposed to be harmless but can stain the contact lenses
get regular blood work done CMP and watch ALT, AST liver enzymes
my doc put me on Milk Thistle when my enzymes went up and they went down with that, but now I heard that MT makes the Rifampin ineffective (that makes sense) but that means maybe one should not take them together
herxing - in my case slept during the day - in the car during lunch time, and fell asleep at the wheel when having to drive to work - sooo drowsy, even though I took at as directed, only in the evening after coming home
that kind of herxing was not the worst, though
I would not be afraid of it - it seemed to help me a lot
my doc put me on 150 mg dose the first week - probably to assess the herxing reaction - and then double the next week - had to get the smaller dose ordered as the pharmacy did not stock it
-------------------- Persistence, persistence, persistence!!! "Nothing in the world can take the place of persistence... Persistence and determination are omnipotent." attributed to Calvin Coolidge Posts: 599 | From USA | Registered: Jun 2011
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Harmony, where did you read that milk thistle makes rifampin ineffective? I was on rifampin last year, then went off to treat Babesia for a while, then tried rifampin again because Bartonella came back.
2nd time around, it has been less effective then the first time at knocking back Bartonella. But I'm currently on milk thistle...would love to read that article.
Posts: 243 | From Southern Arizona | Registered: Jun 2015
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posted
I am also instructed to not take milk thistle while on rifampin. It is also a no-no while on mepron. Instead I use chanca piedra, dandelion, nac, and some other liver supports.
Posts: 474 | From US | Registered: May 2014
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posted
Jordana, Rifampin is also a very old antibiotic, meaning that it has been used for a long time - I always find that reassuring, since newer drugs sometimes have unexpected side-effects
the older drugs have been used by people for long enough to find out that they are safe
maybe that helps you be less afraid - I know the feeling
did you say you were "self-treating"? this is a prescription drug and I would definitely want an expert supervising me for dose and duration and combinations, etc. with that - hope you can find someone you can trust
paleogal, no article - my new doc told me, Lyme Specialist
-------------------- Persistence, persistence, persistence!!! "Nothing in the world can take the place of persistence... Persistence and determination are omnipotent." attributed to Calvin Coolidge Posts: 599 | From USA | Registered: Jun 2011
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Jordana
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posted
Hey there, sorry, didn't realize I got so many helpful replies here.
I'm not self-treating anymore although I planned to. LLMD prescribed it after seeing I still had ehrlichia. I don't know if I have bart and might not.
I don't know why I'm so scared of this drug. I've taken everything else and survived. It's so old it's exotic now.
Just got my legally prescribed bottle of this stuff tonight. I was told to start the mino and then add a half dose of rifampin a couple days later, etc.
Ohhhh boyyyy...
Good to know about the milk thistle, thanks all. I'll report on the color of my wee.
Posts: 2057 | From Florida | Registered: Feb 2015
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bluelyme
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I been putting it off for weeks ...how do you protect the liver when on it?...my friend just got erlichia connexion test. ...the want her in iv riffy...
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Jordana
Frequent Contributor (1K+ posts)
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posted
It doesn't always affect the liver...just sometimes. I read somewhere Dr J thinks that high liver values mean dieoff in the liver.
I'm surprised your friend got IV roc for ehrlichia. The docs know better than me but all the web trawling I do says it's not very effective for that.
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