Haley
Frequent Contributor (1K+ posts)
Member # 22008
posted
I know there are other posts on this. I wanted to see the people that are currently on Rifampin. What is the worst side effect for you? Did it subside after a while?
I tried this drug a year ago and almost ended up in ER. I currently am only taking 150 mg due to another posters suggestion to ramp up slowly. I have so much anxiety, high blood pressure, can't sleep, can't work.
I'm sticking with it because I'm hoping that this is hitting my brain.
any success stories out there? Pleeeeease.
Posts: 2232 | From USA | Registered: Aug 2009
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Tammy N.
Frequent Contributor (1K+ posts)
Member # 26835
posted
I tolerated this one very well. And it really did quiet my Bart symptoms while on it. I don't think I stayed on long enough though. Right now I am targeting babs.
I would say start VERY slowly and give yourself a little time to adjust.
Good luck! Tammy
Posts: 2238 | From East Coast | Registered: Jul 2010
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posted
Had a SEVERE headache from day 1 on Rifampin. Had to quit after 5 days.. the headache from hell did not stop for another 3 wks.
I will never take that stuff again.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Haley
Frequent Contributor (1K+ posts)
Member # 22008
posted
Lymetoo - what dosage were you on? I'm hoping the ramping up slowly will be the key.
Posts: 2232 | From USA | Registered: Aug 2009
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
I felt like it was going to kill me. Ended it at 4 days.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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posted
The fist night I took it (300mg) I had the most severe migraine I have had in years.
The next night bloody nose, and had one every day for a week.
LLMD raised the dosage to 600mg after 2 weeks and I have been on it since (@8 weeks) along with other combinations of antibiotics.
I am starting to feel a bit better, much to my surprise. And I mean just a bit (I was ready to give up; however, just feeling a "bit" better encouraged me to continue treatment!).
Posts: 119 | From New York New York | Registered: May 2010
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posted
My LLMD started me at 600mg right off. I had horrible nausea and dizziness for a week.
Then I split the dose and took 300mg in the AM and 300mg at night.
Once things settled down, after about 2 weeks, I could then take the full dose at once.
I haven't had any problems with it since then, and it, in combo with Doxy, seems to have helped.
Posts: 303 | From Pennsylvania | Registered: Jul 2010
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posted
So many people have good results with it. I did end up in the ER when I took it. Blood pressure went very high, heart raced for 2 days straight. I couldn't handle it.
I don't mean to be negative about it, I just know it works some of us over pretty bad. Does your doc know how you feel?
Posts: 322 | From Venice, CA | Registered: Sep 2008
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lyme in Putnam
Frequent Contributor (1K+ posts)
Member # 11561
posted
Lasted 5 days, husband stopping me from shaking till 7 am. Couldn't do it. My doc had me on 600. Did that for two days. Went down on my own to 300. By the third day I felt like I wanted to be put some place other than home. Do what u feel is right. Couldn't do it. Good luck.
-------------------- He took u to it, He'll you through Posts: 2837 | From NE. | Registered: Apr 2007
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richedie
Frequent Contributor (1K+ posts)
Member # 14689
posted
Been on it three month and have noticed nothing good or bad.
-------------------- Mepron/Zith/Ceftin Doxy/Biaxin/Flagyl pulse. Artemisinin with Doxy/Biaxin. Period of Levaquin and Ceftin. Then Levaquin, Bactrim and Biaxin. Bactrim/Augmentin/Rifampin. Mepron/Biaxin/Artemisinin/Cat's Claw Rifampin/Bactrim/Alinia Plaquenil/Biaxin Posts: 1949 | From Pennsylvania | Registered: Feb 2008
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kidsgotlyme
Frequent Contributor (1K+ posts)
Member # 23691
posted
My daughter's brain fog has gone away with Rifampin. She's been on it for about three months now.
-------------------- symptoms since 1993 that I can remember. 9/2018 diagnosed with Borellia, Babesia Duncani, and Bartonella Hensalae thru DNA Connections. Posts: 1470 | From Tennessee | Registered: Dec 2009
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Haley
Frequent Contributor (1K+ posts)
Member # 22008
posted
Thank you all for the feedback. My very mushy brain is trying to get psyched up for this.
Kidsgotlyme - this is what I'm hoping for. No more brain fog. Do you know which infections she has? Does she have Ehrlichia(sp) and Bartonella ?
Posts: 2232 | From USA | Registered: Aug 2009
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posted
Rifampin put me in a nearly psychotic state. Panic galore. I also ended up in the ER with a body temp of 93 degrees.
Not sure if it was the action of the drug, my inability to detox it, or both. This was probably a year back now.
It seems as soon as I permanently opened my blocked methylation pathways (well, I hope it stays permanent), I can handle so much more drugs and herxes are much less severe. I also believe Lyme and toxicity (not necessarily bartonella) caused most of my anxiety. And on a scale from 1-10, I was a 10. It wasn't encouraging hearing comments from doctors even ER docs that I had the most severe anxiety and panic attacks they had ever seen.
Posts: 967 | From A deserted island without internet access | Registered: Sep 2009
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quote:Originally posted by stephfino: I just started RIF 4 days ago-today I took my first full dose-600mg. Nothing too bad yet-a little dizzy, no headaches. I start taking Zithromax with it tomorrow.....getting nervous after reading these posts.
I don't think Rifampin is a bad drug, I just don't think my body was equipped to handle it at the time.
However, like I said, it is hard on the liver, so just watch those liver enzymes.
If you are tolerating it ok, I don't think there is reason for much concern.
Posts: 967 | From A deserted island without internet access | Registered: Sep 2009
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posted
I've been taking Rifampin for 3 weeks now. 2 pills a day, one after lunch and one a couple hours before bed. I don't like taking my abx on an empty stomach (morning) so I wait until after lunch. I take 4 abx at the same time (rifampin, ceftin, plaquenil, and flagyl). The only thing I've really noticed is that it makes your pee turn orange.
I can't say that ANY of the abx are working really. Maybe if I wasn't taking them I'd be much worse but they sure don't seem to be very effective. Still having daily headaches, arthritis/tendon/muscle/ligament pains. I've been on the ceftin since 10/8/10, plaquenil since 10/21/10, and flagyl on and off since 9/3/10.
It's hard to keep the hope alive that I'll get better. At the moment it appears that I'll have to deal with these pains for the rest of my life.
Posts: 92 | From Georgia | Registered: Aug 2010
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Haley
Frequent Contributor (1K+ posts)
Member # 22008
posted
jlcd, The famous Dr. S. says in his book to start the first week with 300 mg.
I took it a year ago and had such terrible reaction, it did not start until I had taken 600mg for 2 weeks. So, approach with caution.
The main thing I notice now, even on a small dose, is increased blood pressure and anxiety (fast heart beat etc..)
Posts: 2232 | From USA | Registered: Aug 2009
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posted
Yes, yes Rifampin has caused me profound neurological symptoms. Just two doses made me cuckoo for Cocoa Puffs. LOL
Seriously it's a good drug and has helped a lot of people. What I have discovered is that our personal experiences are so distinctly unique.
My spouse and I probably started with the same strain but the meds that work for her don't necessarily help me and vice versa.
Posts: 107 | From new jersey | Registered: Dec 2009
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posted
Rifampin screws up your glands - and stimulates them . The effects of therapy with rifampicin and isoniazid on basic investigations for Cushing's syndrome. Zawawi TH, al-Hadramy MS, Abdelwahab SM.
Department of Medicine, King Abdulaziz University Hospital, Jeddah, Saudi Arabia.
Abstract Rifampicin(R) is a potent enzyme inducer which is now widely used to treat many conditions. We have investigated its effect on adrenal function tests in 18 adults with tuberculosis on rifampicin (R) and isoniazid (INH) as in-patients. Midnight cortisol was above 250 nmol/l in 11 patients with a mean +/- (SD) of 340 +/- 193 nmol/l. The morning serum cortisol following 1 and 4 mg dexamethasone overnight was abnormal in 88.9 per cent and 83.3 per cent respectively. The respective mean values +/- (SD) were 350 +/- 179 and 336 +/- 279 nmol/l. The mean 24-hour urinary free cortisol +/- SD was 513 +/- 375 nmol and was above normal in 6 (33.3 per cent) patients. These results show that midnight cortisol, dexamethasone suppression tests and 24-hour urinary free cortisol are misleading in patients with tuberculosis on (R) and should not be employed for investigating such patients for Cushing's syndrome.
Posts: 188 | From Germany | Registered: Feb 2009
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