trails
Frequent Contributor (1K+ posts)
Member # 1620
posted
Started it today. Would like others to chat with here about it. If you want to chat about your past experience or travel down this road with me right now....
trails
Frequent Contributor (1K+ posts)
Member # 1620
posted
I am my own first buddy.
One pill turned my urine orange. Lucky for me I remembered that it could do this. Coz this past month I have had kidney problems and just had a ureter stent removed 5 days ago. But I am thinking this is def just rifampin orange.
phew.
Posts: 1950 | From New Mexico | Registered: Sep 2001
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trueblue
Frequent Contributor (1K+ posts)
Member # 7348
posted
Hi Trails! I am not on Rifampin and have no experience with it but didn't want you to be here all alone. (Aside from I could learn something I might need down the road.)
Glad to hear the stent is gone. How is the kidney?
ps. I'll come and delete this chatter when the real Rifampin buddies get here.
-------------------- more light, more love more truth and more innovation Posts: 3783 | From somewhere other than here | Registered: May 2005
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kelmo
Frequent Contributor (1K+ posts)
Member # 8797
posted
Speaking on behalf of my daughter. (I swear, I do have a daughter!) She added Rifampin the first of June, along with her 500mg Zith. She is maintaining 300mg of Rifampin.
The herx wasn't as bad as we thought it would be. She has had some very painful days, and went through a couple of weeks of nausea, but things have leveled out a bit. We're trying to find a pattern.
Something we have noticed is better memory and comprehension. Better, but not perfect.
She has been faithful to drink a detox tea every day, and almost 2 gallons of water. No pop or juice, just water. Sometimes with lemon. Her liver enzymes have remained low-normal.
So, that's about it for now.
Posts: 2903 | From AZ | Registered: Feb 2006
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posted
I'm a buddy! I'm a buddy! Me me me! over here!
I started just about 3 weeks ago now. I have to say it is kicking my posterior. Should be called Rif-WHAMPIN. I am taking ...*goes to kitchen*...600 mgs a day.
My stomach seems to be tolerating taking it without food, so that's good. The lovely bright orange color was entertaining, although it was a little bit disturbing when I used my tongue scraper and *that* was orange too.
I have had a few really bad days, where I can't even get out of bed. Herxing? Who knows anymore. I feel like I am always herxing or just in so much pain I can't tell the difference anymore.
My brain fog has skyrocketed, and I am getting a lot of the weird headaches, the localised ones, where I didn't get any headaches before.
My Bartonella rash...hard to say. I think it is fading just a bit although as soon as I started taking the Rif-WHAMPIN, I noticed new streaks appearing around my hips, but this is encouraging (I tell myself, celebrate the rash, love the rash, revel in the rash) because it means that this is hopefully the flare before a whole bunch of Bart gets killed.
I basically want the Rifampin to get medeival on the Bart. Hopefully someone who reads this likes Tarantino and gets the reference.
So, these days have been hard for me, as I seem to be in more pain since starting the Rifampin (and getting the Rif-WHAMPIN)I'm having a bit more nausea and waking up in the morning feeling stone cold. So my body temperature is doing funny things, but I'm not sure if that's the Rifampin or not.
Your buddy,
Alison
--------------------
The obscure we see eventually. The completely obvious, it seems, takes longer. --- Edward R. Murrow Posts: 923 | From California | Registered: Aug 2005
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Andie333
Frequent Contributor (1K+ posts)
Member # 7370
posted
Trails!
Count me in here, too...
I started taking rifampin in December for a lot of neuro sx. The first week was a little grim, with headaches that nothing could seem to touch.
But pretty quickly, a lot of the neuro symptoms began to decrease -- like constant floaters, a feeling of tight banding on my ankles and wrists and some of the twitching. I'm also thinking more clearly.
Still on it -- I understand Bart is a bear to beat!
Glad to see you're starting this and hope it works for you. I start tini in a week or so; wish me luck!
Andie
Posts: 2549 | From never never land | Registered: May 2005
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Areneli
Frequent Contributor (1K+ posts)
Member # 6740
posted
I am thinking about starting Rifampin. Have all symptoms of Bart but Igenex is very slow in sending testing tubes. Have to call them third time I think.
How high do you go regarding dose of rifampin? Anybody went higher than 600 mg?
Posts: 1538 | From Planet Earth | Registered: Jan 2005
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david1097
Frequent Contributor (1K+ posts)
Member # 3662
posted
I had if for a few months. Helped some of the neuro stuff but also gave me extremely painfull joints (this can happen with bart die off).
My result may nt be representative as I seem to have a resistant form of bart as even with levequin I have had to to take very high doses to bring it back under control when I relapsed with it. It evenutally did come back under control. It appears to be a very fast multiplying organism as I woudl relapse-badly (high fever etc)in 3 days if I stopped the levi. during that time.
The big problem with Rifampin is that it reduces the effectiveness of some of the other drugs so if you are infected with more than one co-infection the other infection loads can increase even if you are taking drugs for them.(I was also on Iv ceftriaxone at the time)
You will have to try it and see what happens. It seems to help a lot of people.
Arinelli, I did not go above 600 mg even by accident so I don't know what the effect is.
Posts: 1184 | From north america | Registered: Feb 2003
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trails
Frequent Contributor (1K+ posts)
Member # 1620
posted
hi buddies!
Wish I was feeling as good as this little guy looks. But I am NOT. NOt having a full on herx but not well at all. Thanks so much for eneryone coming round and saying hi and giving their experiences--even my bud true --you can join us here hon, coz we all know you are gonna be dealing with bart SOME day eh? or if not that you can relate to most of what we are going thru via babs.
It is day 2 of rifampin. I am only taking 300 mg so far. I will go to 600 in a few days.
I am having headaches that are short and sharp on one side of my head. I had those many years. And now they are lasting longer and kind of becoming dull and lengthy.
I am dead tired but not sleepy. I have intense muscle/bone pains that come and go within a minute. Arthitic pain the same. I get sharp pains in the bottoms of my feet like an ice pick just jabbed me and sometimes I get those on my hands too.
My kidney area is hurting me a lot--I go for an ultrasound tomorrow morn.
And lastly---I am SUPER crabby and super depressed. Feeling defeated again. Feeling like everyone is getting better and leaving me in the dust. I hate feeling jealous of recovered lymies! All I want is everyone to feel better and then sometimes when I hear they are, I get sad coz I am not. stupid but truthful.
Trying to see the light.
Posts: 1950 | From New Mexico | Registered: Sep 2001
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posted
I am a chicken and am supposed to start either mepron for babs or rifampin for bart soon. So i am just being safe with an easy abx now until I decide how I will torture myself next.
I will watch this thread for responses. You will find out soon if I will be your buddy or not.
-------------------- **Eat Chocolate** Posts: 942 | From USA | Registered: Mar 2005
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That reminds me - I forgot to mention that the Rifampin makes my "Bartfoot" a whole lot worse. I've been walking around my house like a drunken Charlie Chaplin, trying to pick up my feet in a way that doesn't give those sharp pains in the bottoms so much.
Also, my grumpiness has totally escalated. I was driving today and this woman in a Toyota Land Cruiser yapping on a cell phone (welcome to California) almost plowed into me and usually in this sort of situation I honk and move on but today I just started screaming at her before I could even control myself. Thank goodness the windows on my car were rolled up.
Scary Bart rage! I also have the "tired but not sleepy" that you are talking about. SO annoying because I just drag around all day wishing I could sleep. My lower back is killing me, and muscle aches are way worse than usual. Also feelings of hopelessness which I associate with herxing.
I also feel like I have a headache behind my eyballs, if that makes sense. I usually never get headaches so I am pretty sure this is for sure the rifampin.
Well hang in there!
Alison
--------------------
The obscure we see eventually. The completely obvious, it seems, takes longer. --- Edward R. Murrow Posts: 923 | From California | Registered: Aug 2005
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trails
Frequent Contributor (1K+ posts)
Member # 1620
posted
are you supposed to take rifampin without food?
Alison---thanks so much for sharing your experiences! Does your bartfoot only have the pain when you walk on it? Mine has it whenever. I can be lying down. I also get ice pick pains in my palms of my hands.
I have a TERRIBLE HEADACHE that wont go away now!! It is one of those pressure ones. It is awful.
Bad news on the kidneys--my hyrdonephosis is back. For those who arent familiar it has nothing to do with rifampin, but it is something I am dealing with most likely from endometriosis. My back pain is very bad today. The right kidney is swollen again according to the scan. The stent I had drained it, but it is all swollen again.
Feeling pretty desperate. SO much worse each year. No improvement in many years thru many surgeries and treatments both lyme and endo are unrelenting.
Still waiting on my period can you tell? Posts: 1950 | From New Mexico | Registered: Sep 2001
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posted
Started Rifampin two weeks ago. Here are the weird things that have happened. first few days and last night, Extreme body heating and weird internal feeling. My knee hurts alot, never did before. A bit dizzy sometimes and nauseated a little bit. Less appetite. It is not working so far as well as Levaquin. But will give it some more time.
Posts: 298 | From los angeles | Registered: Mar 2006
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liz28
Unregistered
posted
Hi, Trails. Congratulations on getting rid of an easy one!
Tried to think of some spare conventional wisdom that used to float around Lymenet regarding rifampin... think you take it on an empty stomach three hours away from all your other antibiotics, vitamins and supplements. It does interfere with everything, but goes through your system quickly.
Also, it's another one that is really hard on the liver.
I got great results adding in a supplement marketed under two different names: vinpocetine or vicamin. It caused a second rifampin herx, and when that herx ended, there was no more bart (knock on wood). But since it's a supplement, not an antibiotic, please just take this as a personal opinion.
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No, the Bartfoot happens constantly, whether I'm walking or not. It's sort of like the icepick thing in the hands. It'll be fine and then whammo, I'll have that jabbing, searing pain. I also have extremely painful hands but I've had that pretty much the whole time.
Also, the pain and everything got much much worse leading up to my period, and now even on my period, things are a bit better but still pretty bad.
I actually stopped the Rifamppin for a day and a half and just started again this morning. Fingers crossed.
A.
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The obscure we see eventually. The completely obvious, it seems, takes longer. --- Edward R. Murrow Posts: 923 | From California | Registered: Aug 2005
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posted
Hello Rifampin Buddies! I am on my third week of the Rifampin/Biaxim cocktail. Started the Rif at 300 and by the second week I was taking 600. With the 600 dose Rifampin turned into Rif-WHAMPIN as Allison calls it. The way I feel, it better be getting medieval on the Bart.
Levaquin and Doxy were OK, but this new combo has me herxing pretty bad. Most of last week, I had to stay home from work. Since the symptoms are getting worse, I am now dropping from the class I was taking.
Symptoms while herxing are the usual pain in the foot (specially when getting out of bed), brain fog, fatigue, body aches... my nerves throughout the body feel like they are doing the cha-cha-cha or a conga line... sound sensitivity sometimes comes in... body thermostat is out of whack, now hot, now cold... wait a minute, I need to wake up my left hand... and let me not forget the recurrence of lyme rage, or in this case, bart rage (not good when you have a three year old and a four month old at home).
Anyway, hope everyone hangs in there in our road to getting better.
Posts: 29 | From Maryland | Registered: Feb 2004
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kelmo
Frequent Contributor (1K+ posts)
Member # 8797
posted
My daughter started it last June. Her stomach is a mess. She normally takes the weekends off. But, we are taking a little more than that this week to try to heal the gut. It did make a difference, but hasn't caused us to jump up and down and scream remission.
Maybe it needs another pairing. Could be the zith is wimping out.
Posts: 2903 | From AZ | Registered: Feb 2006
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