rifampin?

[Tnmom]

Hey Everyone,

Sorry to bug again but I have a quick question.....does a quick question exist???

 

We have been busy this summer treating our daughter for lyme and have had much success and are extremely thankful for the progress so far. I am always hesitant to start medicine for she has had some bad reactions in the past- namely azithromycin and Valcyclovir.

 

we with trepidation began doxycycline and have been on for 3 months and it has been nothing short of amazing. Her mood is about 95% (apart from a 4 week cycle of regression that sends me into PTSD but she comes out of). Her symptoms have always been neuropsych in nature....she has never displayed much physical symptoms at all.

 

My main concern apart from Lyme has been bartonella.....so we are on and continuing to add to- buhner protocol for lyme. bartonella. and myco (she had high IgM titers in jan/16 for myco....)

 

Her LLMD just NOW is suggesting adding Rifampin...... I thought this should have been part of her protocol from the get go but he is suggesting it now.

 

Here the question- she is doing really well MOOD wise currently on JUST Doxy.....her cognition is SLOWLY SLOWLY improving.....she still freaks me out during regressions where she (9 years old) can't remember the days of the week for example....but it improves.....but cognition and short term memory are still her strongholds......

 

I don't want to screw up her mood )))) at this point she is not displaying mood issue.....

Rifampin is chock FULL of dyes and crud.....I am nervous about that.....

Does anyone have any thoughts or input on whether Rifampin is worth the effort??? What is your experience??? I know we will ultimately make the decision but I always get somewhat fearful before introducing a new med....not herbs...but synthetic meds.....go figure??

 

OH BTW and FWIW and any other acronym I could think of....school starts in 5 days...dum da duhhhhh

 

thanks!!!!!! Robyn

[dasu]

Rifampin turned my daughter's PANDAS around. The first time. The second time it did not appear to help much. But from you are dealing with bartonella and lyme.

[LNN]

Rifampin brought big improvements in my son's Lyme.

[Tnmom]

Thanks for the quick replies. If you don't mind..... How was the reaction to rifampin? Your son got better.... Did he herx significantly on this? I wish we had a normal school schedule but we are almost year round here and I am a wee bit nervous about starting this since school starts in 1 week. She is already repeating the same grade and will be with a new group of kids and with her mood being so good right now I want to give her the best opportunity to make actual connections socially this year. It's the first time I can see it happening in years. Then again, if rifampin helps so much I do t want to wait....

When you started rifampin were you still having significant mood issues or not? We are much better mood wise and slowly improving on doxy cognitively. Did rifampin seem to help cognition too?

Sorry for berating with questions. But feeling in limbo. Wish I had three more weeks of summer but we don't. .

[LNN]

Mood issues weren't a problem for my Lyme son. Anger, yes. Anxiety, yes. But not mood issues in the way I think of them. Rifampin helped right away - I didn't see significant herxing. But we didn't introduce it until we were well into Lyme treatment - maybe a year or so. So maybe the worst was behind us at that point regardless of what was introduced. But it did help a lot with cognition.

 

Maybe start school before adding it, then add it in 3-4 weeks into the year. That way, the jitters and emotional adjustments that are bound to happen simply from the start of school will have had a chance to settle down and you'll be better able to gauge any reactions.

[Tnmom]

thanks for the input- very solid and appreciated. I feel much better about waiting a few weeks into the school year prior to starting. Great advice and not sure why I didn't think about that?!! Really appreciate this forum and input from others who have and or are there....

[airial95]

My son has been on rifampin for years - only thing that keeps the strep at bay and its been huge for his recovery.