Is this a Bartonella relapse?

[susie]

My DD7 stopped rifampin about 2 months ago, not because we were sure that bart. was completely gone, but because she was losing huge amounts of hair and we thought that maybe the rifampin was the cause.

She was in a pretty good place when we stopped. OCD and anxiety were much improved and a facial tic completely disappeared while on the rifampin. She took the rifampin (along with azithromycin and augmentin) for about 4 months.

 

We were told to keep an eye out for increase in bart symptoms and that relapse is usually with a week. We did not think that we saw any increased symptoms in the first week, but now I'm wondering if symptoms are re-emerging. She is having increased anxiety and obsessing more and has gone through periods of asking a lot of questions about things that have her worried (like fires and things). She asked a bunch of questions about fires for a couple of nights in a row, but then stopped.

 

I'm worried that if this is relapse, then the 4 months of treatment will have been for nothing. I have an RX for bactrim, but haven't started it. We could also resume the rifampin since the hair loss has mostly stopped (we never really figured out the cause). Has anyone seen bart. relapse take longer than a few days or a couple of weeks?

[rowingmom]

My DD10 began treatment with rifampin/biaxin for bart/lyme in June 2011. After 4 months her bart symptoms - pick-like headaches, shin/sole pain, motor/vocal tics, cyclical IBS, fatigue, low tolerance for frustration/rage, poor concentration - had mostly resolved. Our LLMD was hoping to continue treating with bart herbals (A-Bart) and address lyme with biaxin/A-L. By Jan 2012 all of her symptoms (tics as well) had returned, so it took about 3 months for her to relapse off rifampin. The relapse was gradual and it wasn't until we were pretty much back at square one that the LLMD said bart was back. We resumed rifampin in Jan 2012 and her symptoms have improved greatly again. She has not had any side-effects to rifampin, not even urine discolouration, and her hair has actually grown thicker. The only thing I have noticed this time is that the dark circles under her eyes have not cleared up as they did the first time.

Edited March 27, 2012 by rowingmom

[NancyD]

It sounds like the infection has not yet cleared. Both my DD and I had hair loss -- not sure if it was from Bartonella or Lyme. But it stopped after a few months of treatment. I have been off my treatment for a few months and I am still feeling great, although I just noticed in the past week a little bit of hair in the bathtub drain, which is unusual for me. Also started getting some nose bleeds again (these stopped after starting treatment). And I am noticing brief joint stiffness. I don't know if I am imagining things -- but I am concerned that it could be coming back. I had 18 mos of treatment and have been off abx for a few months. I sure hope your DD is not relapsing but it sounds like she could be. I would talk with your LLMD as soon as possible.

 

My DD7 stopped rifampin about 2 months ago, not because we were sure that bart. was completely gone, but because she was losing huge amounts of hair and we thought that maybe the rifampin was the cause.

She was in a pretty good place when we stopped. OCD and anxiety were much improved and a facial tic completely disappeared while on the rifampin. She took the rifampin (along with azithromycin and augmentin) for about 4 months.

 

We were told to keep an eye out for increase in bart symptoms and that relapse is usually with a week. We did not think that we saw any increased symptoms in the first week, but now I'm wondering if symptoms are re-emerging. She is having increased anxiety and obsessing more and has gone through periods of asking a lot of questions about things that have her worried (like fires and things). She asked a bunch of questions about fires for a couple of nights in a row, but then stopped.

 

I'm worried that if this is relapse, then the 4 months of treatment will have been for nothing. I have an RX for bactrim, but haven't started it. We could also resume the rifampin since the hair loss has mostly stopped (we never really figured out the cause). Has anyone seen bart. relapse take longer than a few days or a couple of weeks?