posted
I have been trying Rifampin for a few weeks now, the 1st week it was every other day on the 4th dose all hell broke loose, my body was shaking my arms were heavy and the aniexty was through the roof, so I called my LLMD was told to take a break and to restart every 3rd day, well today was my 2nd does and again my neck was tight Lymph nodes, my arms were heavy and my aniexty was through the roof, is this really the way you should be feeling, I am desperate I have tried Levaquin and Cipro and couldn't move, is there anything else, Does that A-BART work, at my last LLMD he said the only thing active in my body was Bart, I have had 2 picc lines, I just don't know what to do, ANY SUGGESTIONS HOW LONG THIS EFFECT WILL LAST I WAS ONLY TAKING 150 MG I CANNOT IMAGINE TAKING 600MG I WOULD PROBABLY DIE FROM ANIEXTY!!!
Posts: 200 | From Massachusetts | Registered: Apr 2007
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posted
I almost died from rifampin. SAME THING after only 2 pills a day apart I was shaking head to toe, bp went crazy high. I could walk at all from the dizzies and weakness and had a hard time breathing. Even with xanax 4 times a day tha they put me on the edge was barely taken off.
My llmd stopped the rifampin right away and it took almost a month to get rid of the side effects. If you look it up on here you will see that the majority of lyme patients have a very hard time with rifampin.
others will tell you that they handled it well but the herx you are having is very bad on your body. This bad herxing makes the disease more difficult to recover from I was told. It reduces your bodies ability to fight since it can only handle one thing at a time.
There has to be another drug to use for bart or like you suggested A Bart and go natural...feel better!!
-------------------- Diagnosed with chronic neuro lyme 12/10 after 30 years of vertigo.2 tick bites in 3 yrs from upstate NY. Was on omincef for nine mths..zith and rifampin stopped.Remission~ All the pain and symptoms are back and I am not treating now with biaxin. Posts: 788 | From New york..queens | Registered: Nov 2010
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posted
The only way hubby could tolerate rifampin was to start at 50 mg daily and then increase by 50 mg every 3 or 4 weeks. It took 8 months I think to get to 600 mg. But eventually the doc had him increase to 900 mg. In my opinion the rifampin in combination with factive was what finally made his seizure-like episodes go away after having them for about 9 years.
When the docs first started prescribing rifampin back in 2003 or 2004 they often had patients get it from a compounding pharmacy so they could start at low doses and stay on the med long enough to adjust to it.
Make sure you are taking milk tistle and other liver supportive herbs/supplements as rifampin is very hard on the liver. That is what causes some of the side effects.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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Haley
Frequent Contributor (1K+ posts)
Member # 22008
posted
I almost ended up in the ER when I did rifampin. I thought ....... never again, but I always wondered if it was really hitting something important. I tried it a year later and ramped up slowly like Bea suggested. My body did get used to it but my brain fog never seemed to get better and I had to work. Maybe I should have hung on longer. I was on it about 4 months (low dose in the beginning). It's possible that some people just can't tolerate this drug.
Also Bea - it's interesting that your hubby also has had positive tests for RMSF. I have a positive test for that. I think the Rifampin was hitting the RMSF and the Ehrlichia for me (even though I also have bart).
Posts: 2232 | From USA | Registered: Aug 2009
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posted
When I first started Rifampin the first time, I had a lot of dizziness and nausea for about 2 weeks. I cut back to half a dose and then ramped up.
Once I got used to it, I was fine the rest of the time I was on it.
LLMD just put me back on Rifampin, along with Minocycline. I don't know which one did it, but I had the worst headaches and ear pressure i have ever had.
I felt like I'd had a stroke. I've been off both abx for 3 or 4 days, and I still can't get rid of the feeling.
Posts: 303 | From Pennsylvania | Registered: Jul 2010
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lymeboy
Unregistered
posted
is it possible these strong reactions speak to the extent of the infection? I have been taking Rifampin, and it is not fun, but no where near what is being described here. Prior to this, I treated Bart with Cipro for 5 months. Maybe the infection has died off some in my case? - Rifampin hits Bart and Lyme, is it possible that it works so well at killing bugs that the die off is just too much?
I do get a "toxic" feeling from Rifampin.
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posted
PEOPLE THIS IS CRITICAL TO UNDERSTAND: RIFAMPIN SHOULD NOT, I REPEAT, SHOULD NOT, BE USED ON DOSING SCHEDULES OTHER THAN DAILY. IF YOU TAKE IT EVERY OTHER DAY OR EVEN WEEKLY, OR ANYTHING OTHER THAN DAILY, YOU CAN GET "FLU LIKE SYNDROME" WHICH IS A DRUG SIDE EFFECT AND HAS HAPPENED TO ME BUT DID NOT HAPPEN TO ME WHEN DOSED PROPERLY!!!!
The 'flu-like syndrome' generally occurs with intermittent dosing of rifampin, in patients with poor adherence to daily rifampin therapy, and when daily rifampin is resumed after a drug free period.
Immunologic side effects have included flu-like syndrome presenting as fever, malaise, nausea, vomiting, petechiae and myalgias. This syndrome is probably an immune-mediated reaction. Rarely, dyspnea and shock have been associated with once-daily rifampin therapy."
Posts: 641 | From Nevada | Registered: May 2009
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Jamers
Frequent Contributor (1K+ posts)
Member # 28016
posted
Dan67-Does this syndrome also occur if you take it once a day? Does it need to be taken 2 times a day for this not to occur.
-------------------- Diagnosed Pos. Lyme Nov. 17, 2010, Igx. Pos. Babesia Duncani March 2011, Igx. Clinical diagnosis for Bartonella Posts: 1127 | From North Carolina | Registered: Sep 2010
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posted
I started to get the syndrome at 1x a day, only at 2x a day was I safe. The literature does say only 1x per day can be dangerous.
Posts: 641 | From Nevada | Registered: May 2009
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Jamers
Frequent Contributor (1K+ posts)
Member # 28016
posted
Thanks Dan. Thats weird since my doc said to take all 600 once a day...Hmmmm. I think I have to start very low, so I hope if i take it low dose 2x day that will be okay. Hopefully low dose doesn't cause it either.
-------------------- Diagnosed Pos. Lyme Nov. 17, 2010, Igx. Pos. Babesia Duncani March 2011, Igx. Clinical diagnosis for Bartonella Posts: 1127 | From North Carolina | Registered: Sep 2010
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posted
Rifampin was such a helpful drug to me, I wouldn't take the chance of having the flu reaction, so personally if I ever go on it again I'm going 2x per day.
Posts: 641 | From Nevada | Registered: May 2009
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Jane2904
Frequent Contributor (1K+ posts)
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posted
Daughter started with one pill for about 8 weeks and then added in second pill. She never had the "flu" issue during that time.
Posts: 1357 | From Massachusetts | Registered: Jun 2008
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Jamers
Frequent Contributor (1K+ posts)
Member # 28016
posted
Bea or anyone-If the pill is 150 mg and I want to take 50mg, can I just take it out of the capsule and break it up? I think the pamphlet says you can mix it in food if you can't swallow the pill.
-------------------- Diagnosed Pos. Lyme Nov. 17, 2010, Igx. Pos. Babesia Duncani March 2011, Igx. Clinical diagnosis for Bartonella Posts: 1127 | From North Carolina | Registered: Sep 2010
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posted
If yor body is detoxin prety well no body should have more then a herx that you can go thru it without stoping rifampin.Yes it is true what dan experienced and also true that rifampin should not be taken alone in any infection because bacteria get easy resistent just in rifampin given alone without another med.
Posts: 482 | From Nebraska | Registered: Feb 2010
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