This is topic rifampin experiences in forum Medical Questions at LymeNet Flash.

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Posted by HW88 (Member # 48309) on :
Hi all, I just started rifampin for bart. I've been on it for about 2.5 weeks-ish.

I was wondering if people could tell me their experiences with rifampin.

I have increased brain fog, headaches, aggravation, mood swings, etc. If this is the bad before the good, I can push through. But not sure, as always, what is going on in my body. I'm only taking 150 mg twice a day, but I've always been sensitive to meds.

just looking for any experience with this drug.
Posted by Lyme248 (Member # 51011) on :
I didn't feel any worse , and I didn't feel any better on rifampin. I stopped because from what I could tell it wasn't doing hardly anything for me.

Maybe it is a good sign that you are getting a did-off reaction.
Posted by Lymetoo (Member # 743) on :
I lasted 5 days .. My hat is off to you, HW!
Posted by Bartenderbonnie (Member # 49177) on :
I was on Rifamin for 1 year.
It was a good drug for me.

I got to 75% functional after 8 months. That first year was really rough with a wide range of symptoms.

I took a picture of my feet because I had so many disgusting veins popping out, like octopus mess. They are now gone. The pain is gone too. Then I had all kinds of squishy benign tumor masses moving around my body. If I sat in a chair, I could feel them against my back. If I layed down, I could feel them float up through my sides. They are also gone.

The brain fog diasappeared but returns when I am tired or overdue it. I had crying jags and severe vertigo which are currently in remission. I still have pain behind my eyes and occasional headaches.

I know it's summer but try to squeeze in Epsom salt baths.
Drink as much water as you can, your urine turns orange on this drug. I also take Liposomal Glutathone and milk thistle. Up detox methods. Fight through the treatment but also listen to your body. I know this is a really hard thing to do. It's so hard to figure out. . . Even LLMD's don't have all the answers. I hope you get monthly blood work to monitor all your body functions while on any treatment protocols.

I took 300mg 2x per day.
I don't believe it got rid of my Bart, but it got it to learn to live peacefully and be a good neighbor in my body.

Hang tough and keep fighting.
Posted by HW88 (Member # 48309) on :
Lymetoo, what did you take for bart?

BB, Glad to hear rifampin was good for you. Was it hard at the beginning? I relate to so many of those symptoms.

I'm suppose to work up to 300mg 2x a day.

I'm seeing a new LLMD this week and am interested in what he has to say. I'm hoping to get some good gains on this... hopefully.
Posted by Lymetoo (Member # 743) on :
My LLMD would run everyone through meds for Lyme, bart and babesia, no matter the test results.

So .. I guess I didn't have bart. I never really had the symptoms of it.

(I never took anything else for bart, that I know of.)
Posted by Bartenderbonnie (Member # 49177) on :

I don't even have to look into my journal about my experiences because I remember it like it was yesterday.

My experienced LLMD started me on an aggressive Lyme treatment for the first 4 months before adding Rimfamin. I was dying from YEARS of steroid use from chronic infections, undiagnosised CVID and Lyme and co. My body would not not handle treating both at the same time.

It was absolutely horrible those first 4 months but slowly I made gains. Then she added Rifamin when I would be able to tolerate it. It really really helped me to believe I could beat this and be normal again. I think it's a great drug but not a cure.

I have heard so many horror stories about adding Rifamin but maybe I'm lucky or maybe it was the timing but it was a hell of a lot easier taking it after my intial blast of antibiotics for sure.

I hope this is the drug that puts you in remission. [Smile]
Posted by HW88 (Member # 48309) on :
Thanks for the input lymetoo and BB. ahh, remission sounds good! [Wink]

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