posted
I started my rifampin on Sunday night. Actually, maybe it was Saturday night - I think it was - I can't remember what day it is now, so that's my first side effect. In fact, I have severe memory loss/amnesia since starting rifampin in a number of ways. I try to remember things that happened, but I can't, and it's getting scary.
If I started it Saturday night, I had several bowel movements Sunday, but absolutely none on Monday. I did not eat anything whatsoever on Monday - zero appetite - as in ZERO. I forced myself to eat something this morning, but I doubt I will eat anything else today. Still no bowel movement today (and yesterday), and the thought of food nauseates me.
I have an extremely metallic/chemical taste in my mouth, and I'm reading that rifampin speeds up the removal of other drugs from the body, including antimalarials and `azoles' - well, I'm on artemisinin and metronidazole, too. I stopped the minocycline because I didn't want to kill myself.
I have the most extreme head throbbing and pressure on rifampin - dizzy spells, too. If I press on my temples - ouch - they are so painful. I almost had to pull over yesterday on 78 because I thought I was going to pass out behind the wheel of my car. The reason I was driving to begin with was because I could not remember if I had completed my 24 hour urine test properly to check my adrenals, so I had to pick up another container.
Will I get my memory back? Seriously. I feel like I need to remember something, but I can't. My left eyelid has been drooping ever since starting rifampin, too, and the left side of my neck is bothering me, too.
My insurance will only allow me three months worth of this one. Will that be enough? Is that 3 months worth per YEAR? How does that work anyway? I'm worried. I know I have major bartonella or BLO, and surprisingly I do not test positive for bartonella - only Lyme and babesia.
My urine is also bright reddish orange since starting rifampin. I tried to sweat toxins out last night by taking a baking soda bath, but I only sweat very mildly - hardly nothing compared to what I usually produce.
I also noticed that my teeth feel much tighter in my gums since starting rifampin - almost too tight. Prior to rifampin, my teeth sometimes became kind of wiggly in my gums quite frequently, no matter how much magnesium or calcium I would take.
What can I expect though? How long before I feel normal? And will I ever get my memory back? I just visited my daughter a little over a week ago and I can't remember even the first turn I need to make to get there.
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posted
The odd colored urine is normal with Rifampin.
You should be taking it with another abx not alone. If the mino is too hard for you, talk to your LLMD about what you should be taking.
I had a terrible flare of cognitive symptoms when starting bart treatment .... I think what you're experiencing sounds like a herx.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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tailz
Unregistered
posted
I'm trying to take metronidazole and artemisinin along with the rifampin because I don't do too badly on those two. Is that okay???
I have some serious metal taste in my mouth. Is this going to go away?
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feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
up for Tailz- there have to be more Bart folks out there to help.
Posts: 3975 | From usa | Registered: Aug 2007
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disturbedme
Frequent Contributor (1K+ posts)
Member # 12346
posted
Rifampin didn't do this for me. Rifampin is the drug that got me up to 70%. I also took Doxy with it, as well as Biaxin on weekends.
Like six said, Rifampin changes urine to a dark orange color, so that is normal. Nothing to worry about.
With Rifampin, I don't remember much of a herx, but just getting slowly better on it. BUT reading other posts about Rifampin here, I've heard it to be a VERY hard drug for some people. Some people couldn't even stay on it long because it was that hard for them.
Maybe you're just having a VERY bad herx on this drug like some of the others here who have. I was lucky that it seemed to just help me so quickly.
I know memory loss can be a lyme symptom, even bad memory loss. I know someone in my support group where it got so bad she couldn't recognize faces of people she knew. So it seems like that's a lyme or co thing. And of course, a herx could make it worse.
-------------------- One can never consent to creep when one feels an impulse to soar. ~ Helen Keller
My Lyme Story Posts: 2965 | From Land of Confusion (bitten in KS, moved to PA, now living in MD) | Registered: Jun 2007
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Alv
Unregistered
posted
Yes it was me..I had the same problem.
But I knew I was killing them.
You feel like you can not funtion at all.I have been there for 5 months ..like that .But I stopped as the ins stopped paying for DOXY -that was huge mistake as I relapsed and lost ground...You should treat it for at least 6 months and even more you you feel the symtoms are still there...
it might be needed to retreat it again ..as it comes out of the tissues and reproduces fast again.
YOu need to take Rifampin with DOXY or MINO ...Or another combo is AZITH with Rifampin .
If you combine AZITR + MINO + RIFAMPIN + ARTEMIS would be best combo
You can pulse flagyl( that can give you nerve burning pain on your head) ..but not now ..as it is too much for you ( I would weit a month or when brain sweelling lowers or you have just patches on your head hurting not the entire brain ) ..and do only 2 weeks flagyl and 3 weeks off.
OK.I completly have been through the same thing.YOu can not even return your head to check your mirrors while you are driving as you feel you can not even keep your car in your line and you willl loss controll ...I could not even coordinate my pedal and comand my foot for the speed.
If somebody was behind me -they would think I was drunk!
It was horrifying -but no body was beiliving me -so What the hell.I know -I had to go to work -and felt as crazy and stupid as it can be -not normal -But I was doing the best that I could to survive and keep my job as I needed the money
Ironicly you look OK --and that ****es you off ..but --I had no choice...driving and working and even --it was a time --probably lasted 2 months --I could not see a foot away as you have a blurry vission.
You are killing bart...I had pain on my face everywhere ...
I have BLO not just bart...it did kill some
Taking rifampin without mino or azithr or doxy -it will make BLO resistant and you can not use rifampin against it anymore..
The best is levaquin -but that should be after --your ins stop paying for rifampin
OK ..Orange color -is normal.
My son has that too.
It is best to take it in and empty stomack..but take doxy before with meal so you have it on your blood.
I could not tolerate 300mg of rifampin for 3 months .
I had probably bart -or many strains since a child....
I am still treating it and I have been up to 1200mg for two weeks.Is not gone yet as it is still on my exstremities...my feet and my hands.
YOU would be awake all night and walking and going crazy ...trust me ..killing bart will do that ...and have horrible insomnia...but you need to take CHOLESTOPURE -no need for perscription.
Or Pinela drops from COWDEN protokoll -again no persctiption --as it helps you bind the neurotoxins...adding clorella will help you also.
Take the binders before the antibiotics...please take the RIFAMPIN with MINO ...having azithromax also would be the best as I was on DOXY and RIFAMPIN --now on AZITHR --that will reach bart on the tissue also -as it would hide there
Also Azithr will go after lyme and mucoplasma also
It has been almost 1 year on treatment -but I had severe enchepalitis -memory loss and completly detach from the world as a human beeing --not anymore---but it took 1 year to come to this point. you can write me if you have any question ...
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posted
My memory has been crap since I started Rifampin (3 1/2 months ago) but I'm not sure if it's actually a lot worse or not.
It does seem from what I have read that people often have several months of downturn after starting Rifampin, so it may pay to be patient. I'm still waiting for an upturn, which hasn't really happened yet but I'm hopeful.
Posts: 929 | From Massachusetts | Registered: Oct 2007
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tailz
Unregistered
posted
Well, after reading all these scary stories here, I'm kicking in some minocycline with the rifampin and metronidazole, but I am so worried about yeast. I'm also afraid to use all my antibiotics. I have this fear that I'll be near death again and not be able to get any.
I actually don't do too badly on metronidazole, but from what I understand, that helps kill certain types of fungus, too, right? - maybe that's why I don't mind it?
Rifampin is killing something though. As bad as my memory is, my vision wasn't as blurry today and I'm not sweating nearly as much. I also haven't been waking up with junk in my eyes, though it's still too early to tell.
My pupils are still tiny though, and my left eyelid droops constantly now since starting rifampin. My face sags slightly on it, too, which isn't good.
I thought it was babesia though (not bart or BLO) that causes sweating and eye problems? In my case, I think it is bart. Is this possible?
I really had some scary episodes of amnesia though, and I just hope this is the worst of it. When you can't remember if you'd finished a 24 hour urine collection properly and drive to the lab to pick up a new container because of it, and you can't remember if you ate anything after midnight for a blood draw, that's pretty bad.
In retrospect, I'm pretty sure the collection was okay and I hadn't eaten, but that morning I could not remember for the life of me.
My insurance will only cover 3 months of rifampin though - that's it. Does anytbody know if that means 3 months a year? A lifetime?
And when is the patent up on Levaquin? Didn't someone say it was in 2009? My insurance will not cover Levaquin, only Cipro, and I only lasted a few days on Cipro.
Dr. B said that he applied (or has?) a pharmacy license, and he could get antibiotics for me wholesale - I'm not sure how much rifampin would be wholesale.
He wants to get me up to 300 mg of rifampin (I'm on 150 mg), but since I had such a bad reaction to Cipro, he is starting slowly.
I honestly think I'm allergic to Cipro - I had severe itching on Cipro - and something else - but I can't remember now because of the rifampin. See what I mean? I have no memory.
Would I have the same bad reaction to Levaquin as I had with Cipro?
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