pandakid11 Posted January 22, 2013 Report Share Posted January 22, 2013 HI Our LLMD is prescribing Rifampin for our DS12. He says it crosses the Blood Brain Barrier and should calm down inflammation there. Thoughts? Experience? Thanks Link to comment Share on other sites More sharing options...
mama2alex Posted January 22, 2013 Report Share Posted January 22, 2013 I've never heard of this being used as an anti-inflammatory, but our LLMD has prescribed it at various times (he rotates and combines abx). It was the first thing he gave my ds12 and we saw some improvement within 6 weeks. It gave us a scare because his urine turned orange, but this is normal. Did he prescribe it for Lyme? Bartonella? Link to comment Share on other sites More sharing options...
LNN Posted January 22, 2013 Report Share Posted January 22, 2013 We've had great experiences with rifampin - but as Mama2alex said - it was for lyme. Have not heard it being anti-inflammatory and since we've used it to kill bacteria, it's actually been inflammatory for us in that it causes inflammatory herxes. But worth it in the end. FWIW - omnicef (cefdinir) also crosses the BBB Link to comment Share on other sites More sharing options...
Hopeny Posted January 22, 2013 Report Share Posted January 22, 2013 My DD9 has been on for 3 months for Bart. I was pretty scared of it initially, DD got liver checks/CBC weekly for the first four weeks and now monthly. Stretch marks (Bart rash) showed up four days after starting which I still find remarkable. DD has had what I believe are Bart herxes on it, some anger episodes. I am plowing thorugh because I now believe for sure she does have Bart due to stretch marks and anger episodes. Dd's urine has not turned orange which I find odd as she is on a higher dose for her age I think (75m 2x/day). Still waiting for pain relief though DD's foot sole pain still persists. I am trying to be careful of keeping her exposure to possible TB low (no taking the train to NYC etc) because one of the zillion things I worry about is drug resistant exposure while on this med. DD's good days are getting a lot better and longer, things are mostly good. Link to comment Share on other sites More sharing options...
NancyD Posted January 22, 2013 Report Share Posted January 22, 2013 Both DD and I had great success with Rifampin for Bartonella, although there was tremendous herxing in the beginning. Link to comment Share on other sites More sharing options...
mama2alex Posted January 23, 2013 Report Share Posted January 23, 2013 My DD9 has been on for 3 months for Bart. I was pretty scared of it initially, DD got liver checks/CBC weekly for the first four weeks and now monthly. Stretch marks (Bart rash) showed up four days after starting which I still find remarkable. DD has had what I believe are Bart herxes on it, some anger episodes. I am plowing thorugh because I now believe for sure she does have Bart due to stretch marks and anger episodes. Dd's urine has not turned orange which I find odd as she is on a higher dose for her age I think (75m 2x/day). Still waiting for pain relief though DD's foot sole pain still persists. I am trying to be careful of keeping her exposure to possible TB low (no taking the train to NYC etc) because one of the zillion things I worry about is drug resistant exposure while on this med. DD's good days are getting a lot better and longer, things are mostly good. Hopeny, Wikipedia says this about the urine NOT turning orange on Rifampin, so you might want to check in with your doctor: "Taking rifampicin can cause certain bodily fluids, such as urine and tears, to become orange-red in color, a benign side effect which can be frightening if it is not expected and prepared for. This effect may also be used to monitor effective absorption of the drug (if drug color is not seen in the urine, the patient may wish to move the drug dose farther in time from food or milk intake)." Link to comment Share on other sites More sharing options...
T_Anna Posted January 23, 2013 Report Share Posted January 23, 2013 DS was on it for 4 days with Cilndomyacin (for strep). Didn't see any improvement, except he had beautiful skin (he's 14.5 and not showering). Did make his pee orange. We are now on Doxyclomin. T.Anna Link to comment Share on other sites More sharing options...
airial95 Posted January 23, 2013 Report Share Posted January 23, 2013 We have done rifampin 3 different times - all for strep (we have no Lyme/co-infections). The first time my son was also on Augmentin when we did the rifampin - it was the ONLY thing that completely knocked out his tics. He did well on it. The second time he was on it he was also on Augmentin/Azith combo and contracted strep while on that combo (yes - for us there is no such thing as proph abx - no matter what he's on, he gets strep!!). We added rifampin and within 36 hours the flare came to a screaching halt and he was at about 90%. It was wonderful. After the 30 day rifampin boost ended, it took 3 days for him to spiral back to where we started. So we added rifampin back in for another 30 days. Unfortunately, the 3rd time it did not have the same impact and he still struggled for the full 30 days. He is no on Cipro while we try to get pre-approval for IVIG. We had some discolored urine, but we were prepared for that. The only other issue we had was it really did a number on his tummy. My little guy has been very lucky that he has had no gut issues with any of the abx that we have been on. We have always used pro-biotics as a precaution, but just normal standard doses/sources (lots of yougurts, etc...) that any "normal" person on abx would need to do to stay on top of it. With the addition of the rifampin each time it gave him problems and we had to upwardly adjust his probiotics. Once he stopped the rifampin - all tummy troubles resolved. Link to comment Share on other sites More sharing options...
airial95 Posted January 23, 2013 Report Share Posted January 23, 2013 Also - it's my understanding from our docs (heard it from our ID, our ped as well as Dr. that when on rifampin you also need to be on another antibiotic. You're not supposed to be on rifampin alone - don't remember the reason for this, our ID told me about it first when we got it early last year and I don't remember. But because I had already heard it before, it didn't phase me when the ped and Dr. B mentioned it the second time around. Link to comment Share on other sites More sharing options...
Hopeny Posted January 23, 2013 Report Share Posted January 23, 2013 I believe you need two abx to avoid drug resistance with rifampin. Due to it being almost impossible to get all thus stuff into dd I do give around mealtime , I will ask llmd about the pee color and also try to give in empty stomach this weekend to see. Dd is on compounded suspension not sure if that makes a diff. Someone on Lyme.net told me not everyone gets orange pee but now I am worried. When I told Dr B her dosage he thought it was a hefty dose Link to comment Share on other sites More sharing options...
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