Here we go.
Dan - yes it is David Rubin at University of Chicago. He does not, as I mentioned earlier, do fecal transplants but since he is one of the most prominent GIs in the country his acceptance of this treatment is a sort of a breakthrough. Having said that, at the time I exchanged emails with him last year he was cautious about its success without having carried out trials regarding its safely and efficacy . As I mentioned, they (U of C) are in the process of applying to the FDA to begin trials. I don't know where they are in this process. Of course, and very happily, there are other and an increasing number of GIs who are finally facilitating FTs for UC (as opposed to "just" for C diff - and by that, before I create an uproar, I know C Diff is horrible and life threatening etc but until very recently it was the ONLY way to have get a GI to do FT).
David, I know that research is led by "big pharma" unfortunately but the fact remains that the first LDN study was published. The second was not. When my friend's daughter's GI wanted to rx it for her, he dug deeper and this is what he was told. I am passing this information on. I believe I am entitled to pass this on and honestly considering the monumental claims made for LDN (cure for everything from MS to cancer to RA and as you know the list goes on) I think it's good, especially as parents absolutely desperate to do anything and everything to cure our children, to have some actual information on this. As I said, it DOES work some but we don't know the stats. And I have tried it twice. And if I were in the position again, I would probably consider trying it again but then I would love there to be more information about this drug.
As for whether our GIs use ASAs to treat CD, to be honest I don't know if they do as my daughter's current dx is UC. And, I know several people who are in full remission from their CD on pentasa. Why is it that it's okay for someone to be in remission on LDN but not an ASA? I know there are studies which show that ASAs are not effective in the treatment of CD but I'm not up on them. I do know that a pubmed search will generate all sorts of papers showing the efficacy of all sorts of herbs, diets, meds etc for IBD and often papers contradicting them as well.
Lastly, as I've posted before, our GI DID actually support our desire to try FTs for my daughter. She feels it's a very promising therapy and has another patient for whom it worked well. She does not feel the same about LDN and has patients who have tried it but not for whom it works. So that was her position. I can't really criticize or defend her on this but that is what it is.
I know we are all looking for a cure or at least a drug which puts this monster into remission without side effects and for some LDN is that drug. But I was posting my experience of it and that of my friend's. I don't think I need to be cautioned against doing so and find it a little odd that you feel the need to do that. You and anyone else is welcome to ignore what I've posted here but the fact on this and try to verify the LDN trial results yourselves.
I'll stop now as it's very late and I'm getting grumpier as I write this.
I hope everyone here finds a very long remission for their kids.
