bartonella question

hello again

I am starting rifampin tomorrow per suggestion of my llmd. He says it is still quite hard to test for bartonella but that I may have it and he thinks I should do the rifampin for it for 4-6 weeks (as I said, in addition to other antibiotcs and herbs).

I looked up the bartonella symptoms and am not sure I have any! but I actually trust my doc ( I usually don't trust too many docs, but this one seems to really know his stuff- I hope!) and want to do all I can to treat everything, so I am gonna start it. He said if I start to notice I feel significantly worse then stop the rifampin. okay.

I thought bartonella was a skin rash and sore feet soles and that kind of thing? what are some other bartonella symptoms?

I just want to get my mind aligned so that I feel I am taking it for a reason. I will also add milk thistle to help balance the liver effects of the rifampin.

Bartonella is terrible! It is probably just as bad as Lyme in some ways. In other ways it is even worse! I can say something terrible about what I found out about bartonella but I don't want to worry you any further, just know it should definitely be treated!

My bartonella symptoms were the following:
Anxiety, Insomnia, Inflammation, Burning, sharp nerve pain, feeling like my body is on fire. Yes you can also get rashes and there are people that talk about the foot thing, but I never did get any foot pain. There might also be some shin pain. Bartonella is a nasty one esspecially when it gets out of hand in the body.

Good news is Bartonella symptoms go away very quickly when introducing treatment, the only downside though is you have to treat for 4-6 months!! I have 0 Bartonella symptoms although I worry if I stop treatment all the symptoms may come right back.

But you will find you will feel much better with bartonella in check.

Yeah Bart is a nightmare. At night my legs and feet feel like they are on fire and although much less now I get twitching, tight muscles and ice pick headaches.

I am unsure what to do. I am picking up my rifampin prescription tomorrow but I am very reluctant to take it because I have no idea if I have bartonella or not.

It is strange because I really do like my llmd and feel he knows his stuff. I was able to talk with him briefly on the phone yesterday, THey have a thing where anything more than ten minutes answering medical questions becomes an expensive phone consult where as ten minutes is free, so I had to make it quick.

He had originally said to start rifampin next Monday if I don't feel significantlybetter. I am noticing significant improvement now.

2 days ago I had a bad flare up and felt bad andso mentioned that on the phone.

Anyway- I am just confused. I want to call back the docs office again to get clarity on- was I tested for bartonella and do I have it or not? but I have been callingthe doctors office So often I am a bit reluctant. My next appointment is in three weeks and I am considering waiting on the rifampin until I can have a full discussion about it in person with my doctor.

Is there a clear cut test for bartonella? My llmd had me have 8 vials of blood drawn and tested me for all sorts of things, and he is also very knowledgable about coinfections. He said there was not a great test for bartnella yet- but I am unclear of if there is any test and if I have it or not.

Rifampin seems really scary to me. I read some people died on it and also others had significant liver damage. If I do have bartonella I am willing to do whatever I have to to get rid of it but I don't even know if I have it so am confused about if I should take the rifampin. I am having a strong aversion to the idea of taking it.

I think because my lyme symptoms are so based in my head area, and because I also had panic attacks, that my doctor suspected bartonella. Is this enough evidence or can those things also be lyme? Can someone help me figure out if I have bartonella or not, and if there is a good test for it?

I did ask the doctor this just yesterday and he said it would be a good idea to take it because they suspected bartonella, but he didn't say I had it for sure.

Can someone help clarify any of this for me? And would it be okay to wait three weeks to meet with my doctor before deciding to take it or not?

I will continue with the minocycline plaquenil and herbs.

 

the more I read stories of rifampin the more scared I get to start it. Also, I read that it is really a bad one to start and stop. ugh. I am doing fine on the mino and plaquenil and was hoping I would not need to add the rifampin.

The only symptom I have right now is the massive constant tinnitus.

Can someone please tell me if tinnitus is a clear sign of bartonella ( and also the anxiety I had) or if it could possibly be from the lyme?

I am so unclear about what to do. Something in me is very reluctant to try the rifampin. But I want to treat it if I have to. so unsure of what I should do.

Rifampicine, together with Ketek were for me the best tolerated abx. I didn't worry about Rifampicin, I did about the other one (that had terrible comments on the internet), but it wasn't worth worrying.

I can just tell you that I did fine on it, and many many others do to.

I hope you figure out what to do Kate,

MarieLS

Try taking the rifampin. It's not so bad, it just makes your pee reddish orange, which is the color of the drug.

I have to go back on it tomorrow because I ran out of Septra DS which has worked well for my Bartonella. The only way i can get my antibiotics is in the mail and tney haven't come yet. I got mild burning in my body this morning when not taking antibiotics so I am concerned it is still active Bartonella.

In the size doses that we, as Lyme patients, take regularly, there is no antibiotic that is no big deal - there are very real and sometimes significant side effects that a person can experience. After looking up the abx and doing a little reading on it, if anyone still feels concern about taking an abx, they should be talking with their doctors.