rifaxamin/xiafaxin

Vanco, flagyl, and rifaxamin are the three most prescribed abx for cdiff. My son was on all of them, sadly at the same time. Nothing really worked for the duration however. But, some GIs do prescribe them for UC as well??? Don't know what to tell you other than it is not a new wonder drug.

Trojen,
Yes, it's not a wonder drug but has had success with treating IBD. Our GI wants to try it, long shot like everything else right now.
NSSG, just found out it's available in Europe and India. I have family sending it to me tomorrow and it's about 50 Euros for two months instead of $1100 or so in the US. Odd.

I think it has had mixed effects. For me personally, it made my flare MUCH worse. I've seen some postings on here saying that it worked.

My current GI Rx'ed Xifaxin for me about 3 years ago. Sorry to say it made no difference for my symptoms at all.
Yes it was expensive.
Some people in a study must have seen improvement or my doctor would not have suggested it. In fact she suggested it again to me and I reminded her I'd tried it already.

Good luck S...I hope this works for you guys...

One question though...is she still on LDN?? If you start this new regimen how do you really know it is working or LDN?

How do you get her to take all of this stuff?? Does she know how to swallow pills?

May I suggest taking a probiotic with a good track record such as VSL3 while doing an antibiotic therapy?

Sometimes antibiotics work because they eliminate the offensive bacteria while giving good bacteria a chance to recolonize. My first flare was both triggered and fixed by antibiotics.

Good luck, I can't imagine any problems trying it. I do know there are kids that are in remission with using Rifaxamin indefinitely with a pulse dosing method. ie. 2 weeks on, 2 weeks off. At any rate, if it helps your little girl get stabilized....its worth it.

yes tried it. rifaxamin, it's not absorbed through the gut so less likely to have long term effects. no data though. i don't even know if we'll have time to get it.

Do you think the LDN is making her worse or just bad timing with the cold?
Oh S..hang in their...have you tried hydrocortisone enemas?

Do you think the ssz is making things worse ?

Fecal transplant enema at home?

Just reaching here...i so feel your desperation
Hugs...

remi - waiting for ID to give okay. apt tomorrow morning. if they do, good but we are SCARED to death of it. gi does not favour it. read very scary things about infections etc. so worried. also worried they will say no then we have to wait over three months for some tb drugs. at that point i will just lose my mind. so, we wait and see. anyway, we can't get it until the 14th even if they say "yes".
i think it's the cold not the ldn. i don't think it can make you worse. i just don't think it's going to work for us since we tried it before for over six weeks with nothing. just retrying out of desperation.
ft, were doing it but then started getting worse. could be a connection but i think it's the cold. always means bad stuff for us. her wbc are low which means cold.
ssz doing nothing.

thanks guys. this just SUCKS.

Don't be too afraid of Remi....it could stabilzed her immediately. Despite the scary warnings, the safety profile is quite good. Remi is notorious for stabilizing people who fail all other drugs.

Good Luck, our thoughts are prayers are with you guys. Please keep us posted.