Guest guest Posted March 12, 2009 Report Share Posted March 12, 2009 Hi I've had severe UC for 5 years. Been on the SCD very strictly for about 14 months. Did Asacol, prednisone and eventually Imuran to get off the steroids. Since December have been in absolutely the worst flare of my life! Extreme pain, lots of blood, 20-25 watery diarrhea, housebound. I looked into LDN as well. My GI just pushed Remicade so I went to my family physician with research in hand. He was very open to it and prescribed it for me. I was literally holding on day to day and wondering if I should go to the ER. Once I started on the LDN the severe pain was gone in 3 days and now I'm on day 13 and my bms have gone from 20-25 to 5-7 and more formed and I'm improving more and more every day. While the SCD alone works for some people it has not for me. In fact this has been my worst year ever. LDN has given me my life back and I don't have to worry about all the horrible side effects of all the other " traditional " drugs. Good luck to you. If you want to email me directly with more questions feel free. Happy to help! Deanna UC 5 years LDN > > Hi everybody, > > I see my GI tomorrow and my symptoms are not improving and in fact, getting worse. I haven't been responding to treatments and the next step he wants me to do is Imuran. I have been doing the SCD diet for about a month, but making mistakes here and there because I'm still learning how to do this thing. Right now I backed up and am on the Intro diet. No improvements yet. Anyway, someone mentioned LDN and I have been reading up on it, but see that many GI's don't prescribe it and many times need MUCH convincing to do so. I would really like to give it a try, I think, but was wondering if anyone has had experience with it or know something that might be helpful. > I am trying to avoid the immunosuppressant route as much as possible. They scare me, even after reading about them. > Thanks so much for any feedback on this issue. > > SCD-month > UC-had it for 23 years > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 12, 2009 Report Share Posted March 12, 2009 > > > > Hi everybody, > > > > I see my GI tomorrow and my symptoms are not improving and in fact, getting worse. I haven't been responding to treatments and the next step he wants me to do is Imuran. I have been doing the SCD diet for about a month, but making mistakes here and there because I'm still learning how to do this thing. Right now I backed up and am on the Intro diet. No improvements yet. Anyway, someone mentioned LDN and I have been reading up on it, but see that many GI's don't prescribe it and many times need MUCH convincing to do so. I would really like to give it a try, I think, but was wondering if anyone has had experience with it or know something that might be helpful. > > I am trying to avoid the immunosuppressant route as much as possible. They scare me, even after reading about them. > > Thanks so much for any feedback on this issue. > > > > SCD-month > > UC-had it for 23 years > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 12, 2009 Report Share Posted March 12, 2009 Yeah, a bunch of it are on it. What do you want to know? Feel better. Mara > Hi everybody, > > I see my GI tomorrow and my symptoms are not improving and in fact, > getting worse. I haven't been responding to treatments and the next > step he wants me to do is Imuran. I have been doing the SCD diet for > about a month, but making mistakes here and there because I'm still > learning how to do this thing. Right now I backed up and am on the > Intro diet. No improvements yet. Anyway, someone mentioned LDN and I > have been reading up on it, but see that many GI's don't prescribe > it and many times need MUCH convincing to do so. I would really like > to give it a try, I think, but was wondering if anyone has had > experience with it or know something that might be helpful. > I am trying to avoid the immunosuppressant route as much as > possible. They scare me, even after reading about them. > Thanks so much for any feedback on this issue. > > SCD-month > UC-had it for 23 years > > > > ------------------------------------ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 12, 2009 Report Share Posted March 12, 2009 Yeah, a bunch of it are on it. What do you want to know? Feel better. Mara > Hi everybody, > > I see my GI tomorrow and my symptoms are not improving and in fact, > getting worse. I haven't been responding to treatments and the next > step he wants me to do is Imuran. I have been doing the SCD diet for > about a month, but making mistakes here and there because I'm still > learning how to do this thing. Right now I backed up and am on the > Intro diet. No improvements yet. Anyway, someone mentioned LDN and I > have been reading up on it, but see that many GI's don't prescribe > it and many times need MUCH convincing to do so. I would really like > to give it a try, I think, but was wondering if anyone has had > experience with it or know something that might be helpful. > I am trying to avoid the immunosuppressant route as much as > possible. They scare me, even after reading about them. > Thanks so much for any feedback on this issue. > > SCD-month > UC-had it for 23 years > > > > ------------------------------------ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 12, 2009 Report Share Posted March 12, 2009 Mara I too would like to know all the infor you have on the LDN. I have to try something different. I am also afraid of the Other drugs that have been offered. Thank you for your help Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 12, 2009 Report Share Posted March 12, 2009 Mara I too would like to know all the infor you have on the LDN. I have to try something different. I am also afraid of the Other drugs that have been offered. Thank you for your help Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 12, 2009 Report Share Posted March 12, 2009 Is it effective? Are people getting better? Any bad side effects? Â Is it safe all in all?Thanks,To: BTVC-SCD Sent: Thursday, March 12, 2009 12:42:05 PMSubject: Re: Low Dose Naltrexone? Yeah, a bunch of it are on it. What do you want to know? Feel better. Mara > Hi everybody, > > I see my GI tomorrow and my symptoms are not improving and in fact, > getting worse. I haven't been responding to treatments and the next > step he wants me to do is Imuran. I have been doing the SCD diet for > about a month, but making mistakes here and there because I'm still > learning how to do this thing. Right now I backed up and am on the > Intro diet. No improvements yet. Anyway, someone mentioned LDN and I > have been reading up on it, but see that many GI's don't prescribe > it and many times need MUCH convincing to do so. I would really like > to give it a try, I think, but was wondering if anyone has had > experience with it or know something that might be helpful. > I am trying to avoid the immunosuppressant route as much as > possible. They scare me, even after reading about them. > Thanks so much for any feedback on this issue. > > SCD-month > UC-had it for 23 years > > > > ------------ --------- --------- ------ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 12, 2009 Report Share Posted March 12, 2009 I don't have time now for anything lengthy, but one thing youcan do is look in our recent archives - Jody and I started in Novemberand if you put LDN in the search box function a lot of detailed conversation should come up.Keep in mind, it's essentially shooting you full of (not literally)tons of endorphins every day - endorphins are great things, theymake you happy, reduce depression, reduce pain, modulate yourimmune system to a more healthy level, give you energy, give youmore well being, increase sexual drive, etc. Can you see a downside there? <g> Some people have side effects - like everything, you have to try it.It's a very safe drug. It's long been approved for other reasons in higher doses - this is a very low dose - hence "low dose Naltrexone". Mara Is it effective? Are people getting better? Any bad side effects? Is it safe all in all?Thanks,To: BTVC-SCD Sent: Thursday, March 12, 2009 12:42:05 PMSubject: Re: Low Dose Naltrexone?Yeah, a bunch of it are on it.What do you want to know?Feel better.Mara> Hi everybody,>> I see my GI tomorrow and my symptoms are not improving and in fact, > getting worse. I haven't been responding to treatments and the next > step he wants me to do is Imuran. I have been doing the SCD diet for > about a month, but making mistakes here and there because I'm still > learning how to do this thing. Right now I backed up and am on the > Intro diet. No improvements yet. Anyway, someone mentioned LDN and I > have been reading up on it, but see that many GI's don't prescribe > it and many times need MUCH convincing to do so. I would really like > to give it a try, I think, but was wondering if anyone has had > experience with it or know something that might be helpful.> I am trying to avoid the immunosuppressant route as much as > possible. They scare me, even after reading about them.> Thanks so much for any feedback on this issue.> > SCD-month> UC-had it for 23 years>>>> ------------ --------- --------- ------>> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 12, 2009 Report Share Posted March 12, 2009 i think glutamine and l-tyrptophan have helped me - and no side effects - just another thought eileen > > > > > Hi everybody, > > > > > > I see my GI tomorrow and my symptoms are not improving and in fact, > > > getting worse. I haven't been responding to treatments and the next > > > step he wants me to do is Imuran. I have been doing the SCD diet for > > > about a month, but making mistakes here and there because I'm still > > > learning how to do this thing. Right now I backed up and am on the > > > Intro diet. No improvements yet. Anyway, someone mentioned LDN and I > > > have been reading up on it, but see that many GI's don't prescribe > > > it and many times need MUCH convincing to do so. I would really like > > > to give it a try, I think, but was wondering if anyone has had > > > experience with it or know something that might be helpful. > > > I am trying to avoid the immunosuppressant route as much as > > > possible. They scare me, even after reading about them. > > > Thanks so much for any feedback on this issue. > > > > > > SCD-month > > > UC-had it for 23 years > > > > > > > > > > > > ------------ --------- --------- ------ > > > > > > Quote Link to comment Share on other sites More sharing options...
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