Hi Barb,

I have personally talked to at least a few hundred people who have tried LDN, and read many more accounts. I have heard of two people who have had attacks shortly after starting on LDN. On both occasions the attacks started within very few days of starting on LDN, so who knows if the inflammation was well underway before they started on it.

One of those two people was ultimately advised to be checked for Lyme (last I heard, LDN is not recommended for those who have Lyme); she was, and she did have it. I haven't seen her on the MS forums for a few years, so maybe she didn't have MS at all.

I think I've heard of one allergic reaction, which can be caused by the drug itself, or by the fillers (if not compounded into a liquid with the pure powder). I also heard of one guy that freaked out because his symptoms "stirred up" (some people experience this at first), and he went off right away.

Other then that, all I've heard is good stories, or stories where the person didn't get any immediate symptom benefit so they went off just because they didn't think it would help them in the long run.

As far as your concern about people going off other meds, personally I do not recommend this, especially right off the bat. I don't understand how a person could tell what is causing/helping what , but I have heard of many people doing this anyway. I waited a year before I went off antidepressants, and the withdrawals from that were hard enough for me. Once I was off I was fine though.

Having said that . . . I got considerable symptom improvement from LDN, so drugs that I probably should have been on, could have been dropped once LDN did it's magic (for me). I had really bad spasticity pain, which I had been suffering with for two years, but I wasn't on anything for it. Undoubtedly I could have gone off "whatever", had I been on once I started on LDN . ..

I've heard of people combining it with Tysabri, the CRABs, narcotics . . . all things I've understood to potentially conflict with the efficacy of LDN. As far as Imuran, I think I recall someone saying they continued to use it while on LDN . . . but that question is probably best answered by an LDN experienced pharmacist, like Skip.

Barb, the way I looked at it was I couldn't use the CRABs or steroids, and that was all that was available at the time, so I really had nothing to lose by trying LDN. Luckily, it seems to have worked out well for me.

Cherie