posted
Doxy didn't do a thing for me so Rifampin and Zithro are the next move. I'm among the sensitive drug takers with an immune system that's totally out to lunch.
I read a lot of old posts. A lot of people had a pretty hard time with Rifampin: anxiety, shaking, weakness, racing heart. Many seemed to have to discontinue taking it.
Has anyone gotten through reaction-free or with only a week long flare? Anyone feel it worked well for them?
Posts: 702 | From North Eastern USA | Registered: Dec 2009
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posted
rifampin really helped my bartonella headaches and sinus issues.. still on it now
Posts: 245 | From East Brunswick, NJ | Registered: Oct 2008
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posted
Some good news. Thanks Starfall. The plan is to later add Flagyl to the Rifampin and Zithro. No more Doxy in the mix for me.
Posts: 702 | From North Eastern USA | Registered: Dec 2009
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Just curious - do you have Lyme and Bart? (and anything else)?
I'm on Doxy now and will soon add Zithro and possibly Rifampin - sounds like we're on the same path.
I have Bb, Bart, HME, mycoplasma.
I have the same reservations about Rifampin...but thanks for posting this question and please update us when/if you try it (if you don't mind!).
Rifampin is hard on the adrenals (contraindicated in people with Addison's for this reason). I have Addison's which is why I'm so worried. But my doc says we can probably adjust my other meds to tolerate it...
I wonder if this is why so many with Lyme have such a hard time with Rifampin - b/c they have low adrenal reserve??
Posts: 95 | From Maryland | Registered: Sep 2009
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posted
Pas, thanks for posting. I have lyme, bart, and babs. My first protocol was cefdinir, zithro, minocin--didn't take the zithro long. The other two were very quickly--6 weeks--too much for me. Had to stop. The Doxy for 9 weeks--6 of which at 400 mg/day. Didn't touch the bugs.
I don't have Addison's (I don't think). Sorry is that adrenal fatigue? Can't keep all this stuff straight. I think I'm ok in this department.
I will take Rifamin in the next week or two so I will keep you posted, for better or for worse. Hope it's for better because if this doesn't work I'm getting the pic or the port---eeeek!
Have to DO something--can't live like this!
Posts: 702 | From North Eastern USA | Registered: Dec 2009
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I think the Doxy is working a little for me (it's IV). Last night in the bath I got the "classic" Bart rash all over my belly, so I'm hoping that's a sign.
I herxed a lot on my 3rd day of the Doxy IV. On oral Doxy I never felt anything. I'm looking forward to adding IV Zithro but am nervous about the Rifampin!
But, it's supposed to be a great drug for Bart especially, and used in combo with Doxy and Zithro it should take care of any mycoplasma problems too as well as all forms of Lyme.
Addison's is sort of the extreme of adrenal fatigue, I guess. Complete failure of the adrenals, usually autoimmune.
Looking forward to hearing about your experience with Rifampin! I think it's definitely worth a shot. Sounds like you were ready to feel better yesterday! You can do it.
BTW, I have a PICC and so far, so good. The procedure was rough but it's been about 6 weeks and I'm thankful to have it. Feel free to PM me for more info if you want...
Posts: 95 | From Maryland | Registered: Sep 2009
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Haley
Frequent Contributor (1K+ posts)
Member # 22008
posted
Rifampin is an excellent medicine. For some reason some people can't tolerate it. You may not be one of those people.
Posts: 2232 | From USA | Registered: Aug 2009
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map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
I'm not an abx supporter, haven't been in over 6 yrs but rifampin, 30 days so far, seems to be what I needed. I'm only planning on using it for 2-3 mths and then go with rife treatment only.
Yes the first 10 days were rough. The headaches have been powerful some days. I had a bart cycle with long bone/shin pain that was tough. But....
My GI system issues are flowing so well. Insomnia, staying up till 2-3 a.m. and sleeping till 10 a.m. disappeared just a week into rifampin. Ambien(years) didn't help with this part of sleep pattern. It was like bart wasn't going to bed until bart was ready!!!!!!!!!!!! SOB, he is annoying.
I'm in bed 11-12 and up at 7. I'm also highly + for mycoplasma Pn and rifampin is choice abx for treating it also.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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Rifampin put me in a hospital bed with all the symptoms you mentioned, and others.
I blamed it on the medicine, but everything I touch (even herbal), I react strongly too. I now don't believe it was the Rifampin. I believe that my body was becoming so toxic from bart die-off that it physically and psychologically didn't know what to do. I was trying to blame it on a prophyric reaction, but I'm not sure that was the case.
I'm not trying to discourage you, but if you happen to have a strong response, consider creating new capsules and ramping up the dose until it's comfortable. I've heard of people putting the drug into 50 mg vegicaps and ramping up to full dosage from there without a problem. Of course, you would want to ask your doctor about this.
Posts: 967 | From A deserted island without internet access | Registered: Sep 2009
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posted
Yes, I plan to ramp even more than my doc said. I KNOW I have to be careful because I've ended up in the hospital like you, kday, while on my first protocol.
Pas, my doxy was oral. I've yet to do any IV abx. Scary. I feel like I'd rather have a port. Please don't even tell me about the pic proceedure!!! I'm scare-dy pants enough!
I don't much care for this only escape=corridor of fire business, ha ha. Stupid rock and hardplace!
Thanks for the posts and PMs everyone--the success stories are really helpful.
Posts: 702 | From North Eastern USA | Registered: Dec 2009
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posted
Rifampin has been one of my favorite abx. It does wonders to get rid of my bart symptoms.
Lymers
Posts: 287 | From Humboldt County, CA | Registered: Jul 2009
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map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
I forgot to mention another sx that has disappeared in a month on rifampin. Rashes/skin eruptions.
I've been fighting the skin eruptions & skin infections for maybe 5 yrs. They moved around from one place or another.
Not a one in a month. That's a plus for me. No, I've never had the stretch marks bart(so called typical rash), just many other types.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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posted
I used to have more skin problems, not so much lately. I believe I had impetigo from time to time. Now just minor clusters of small red spots on belly area.
Mostly doc said the eye pain/problems, headaches/migraines, foot/heel pain, and that good ol' rotten anxiety are the bart problem for me.
I won't miss 'em!
Posts: 702 | From North Eastern USA | Registered: Dec 2009
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lymeinhell
Frequent Contributor (1K+ posts)
Member # 4622
posted
I was successful in getting rid of Bart with Rifampin. I've been off all abx 5 yrs now.
For me, it was a tough drug at first (my skin was on fire within a week), and would suggest you ramp up to the full dose rather than jump right in, particularly if you find yourself sensitive to new meds. Of course, discuss this with your Dr.
-------------------- Julie _ _ ___ _ _ lymeinhell
Blessed are those who expect nothing, for they shall not be disappointed. Posts: 2258 | From a better place than I was 11 yrs ago | Registered: Sep 2003
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