Guest guest Posted August 6, 2009 Report Share Posted August 6, 2009 Anyway, would like to try LDN before Dr puts me on 6MP or something else. Before I talk to him, would like to know exactly what to ask for. I think I want to ask for the cream, but the LDN page only has guidelines for pills. Can someone please help? Mara? Jodi? Also, there are a few compounding pharmacies here in town, but would I be better off using a mail order pharm that is more familiar with this? Suggestions?Im curious about LDN as well, because if I'm not doing completely well after I'm off the prednisone I'll ask my doc about possibly going on LDN. If I was doing the cream, would I need to get it compounded? That doesn't make sense to me, since I wouldn't be ingesting it. Doesn't seem like the ingredients would matter since it's bypassing your intestines (I think?). Anyways, any info you could give me would be great! Pour Dieu, pour terre,Alyssa 15UC April 2008, diagnosed Sept 2008SCD June 2009 (restarted)20mg Prednisone 1x daily ugh Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 6, 2009 Report Share Posted August 6, 2009 Anyway, would like to try LDN before Dr puts me on 6MP or something else. Before I talk to him, would like to know exactly what to ask for. I think I want to ask for the cream, but the LDN page only has guidelines for pills. Can someone please help? Mara? Jodi? Also, there are a few compounding pharmacies here in town, but would I be better off using a mail order pharm that is more familiar with this? Suggestions?Im curious about LDN as well, because if I'm not doing completely well after I'm off the prednisone I'll ask my doc about possibly going on LDN. If I was doing the cream, would I need to get it compounded? That doesn't make sense to me, since I wouldn't be ingesting it. Doesn't seem like the ingredients would matter since it's bypassing your intestines (I think?). Anyways, any info you could give me would be great! Pour Dieu, pour terre,Alyssa 15UC April 2008, diagnosed Sept 2008SCD June 2009 (restarted)20mg Prednisone 1x daily ugh Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 6, 2009 Report Share Posted August 6, 2009 Mara, My son has been on LDN since mid-Feb. We didn't see dramatic improvement on it, but I believe he has a lot of bacterial issues that may be hindering the effectiveness. He also started on Sulfasalazine in May, which his GI doctor is finding people responding too well (that's the original drug before they took the sulfa component out and called it Pentasa, etc.) Apparently Sulfasalzine has some antibacterial properties, which are beneficial for him. My hunch is the Sulfasalzine may be helping with the bacteria and then letting the LDN work better. Hard to say. He had a good summer - finally able to get out with his buddies and do normal 18yr boy things like go to baseball games and batting cages. Unfortunately, the last few days he's been having increased frequency and when I collected the stool sample for the monthly Cdiff monitoring we have to do, it was liquidy and some blood. I'm hoping it's just a die-off reaction from too fast of an increase in the the dosage of a Lauricidin supplement he resumed to help with the bad bugs. We've backed off of that and are praying he gets back on track as he heads off to college on Aug 19. Thanks for asking. Sally Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 6, 2009 Report Share Posted August 6, 2009 > Mara, > > My son has been on LDN since mid-Feb. We didn't see dramatic > improvement > on it, but I believe he has a lot of bacterial issues that may be > hindering the effectiveness. He also started on Sulfasalazine in May, > which his GI doctor is finding people responding too well (that's the > original drug before they took the sulfa component out and called it > Pentasa, etc.) Apparently Sulfasalzine has some antibacterial > properties, which are beneficial for him. My hunch is the Sulfasalzine > may be helping with the bacteria and then letting the LDN work better. > Hard to say. He had a good summer - finally able to get out with his > buddies and do normal 18yr boy things like go to baseball games and > batting cages. Unfortunately, the last few days he's been having > increased frequency and when I collected the stool sample for the > monthly Cdiff monitoring we have to do, it was liquidy and some blood. > I'm hoping it's just a die-off reaction from too fast of an increase > in > the the dosage of a Lauricidin supplement he resumed to help with the > bad bugs. We've backed off of that and are praying he gets back on > track > as he heads off to college on Aug 19. Thanks for asking. Glad to hear he's doing at least somewhat better. Yes, I believe Elaine suspected that the sulfa element in sulfasalazine was a anti-bacterial agent and that is why it was somewhat successful in helping with various IBS ailments. I wonder if I would have found it more helpful than colazal - but it is immaterial now. College already, huh? TIme flies. And congratulations to you and him. Where is he heading? Mara Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 6, 2009 Report Share Posted August 6, 2009 > Mara, > > My son has been on LDN since mid-Feb. We didn't see dramatic > improvement > on it, but I believe he has a lot of bacterial issues that may be > hindering the effectiveness. He also started on Sulfasalazine in May, > which his GI doctor is finding people responding too well (that's the > original drug before they took the sulfa component out and called it > Pentasa, etc.) Apparently Sulfasalzine has some antibacterial > properties, which are beneficial for him. My hunch is the Sulfasalzine > may be helping with the bacteria and then letting the LDN work better. > Hard to say. He had a good summer - finally able to get out with his > buddies and do normal 18yr boy things like go to baseball games and > batting cages. Unfortunately, the last few days he's been having > increased frequency and when I collected the stool sample for the > monthly Cdiff monitoring we have to do, it was liquidy and some blood. > I'm hoping it's just a die-off reaction from too fast of an increase > in > the the dosage of a Lauricidin supplement he resumed to help with the > bad bugs. We've backed off of that and are praying he gets back on > track > as he heads off to college on Aug 19. Thanks for asking. Glad to hear he's doing at least somewhat better. Yes, I believe Elaine suspected that the sulfa element in sulfasalazine was a anti-bacterial agent and that is why it was somewhat successful in helping with various IBS ailments. I wonder if I would have found it more helpful than colazal - but it is immaterial now. College already, huh? TIme flies. And congratulations to you and him. Where is he heading? Mara Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 6, 2009 Report Share Posted August 6, 2009 > Mara, > > My son has been on LDN since mid-Feb. We didn't see dramatic > improvement > on it, but I believe he has a lot of bacterial issues that may be > hindering the effectiveness. He also started on Sulfasalazine in May, > which his GI doctor is finding people responding too well (that's the > original drug before they took the sulfa component out and called it > Pentasa, etc.) Apparently Sulfasalzine has some antibacterial > properties, which are beneficial for him. My hunch is the Sulfasalzine > may be helping with the bacteria and then letting the LDN work better. > Hard to say. He had a good summer - finally able to get out with his > buddies and do normal 18yr boy things like go to baseball games and > batting cages. Unfortunately, the last few days he's been having > increased frequency and when I collected the stool sample for the > monthly Cdiff monitoring we have to do, it was liquidy and some blood. > I'm hoping it's just a die-off reaction from too fast of an increase > in > the the dosage of a Lauricidin supplement he resumed to help with the > bad bugs. We've backed off of that and are praying he gets back on > track > as he heads off to college on Aug 19. Thanks for asking. Glad to hear he's doing at least somewhat better. Yes, I believe Elaine suspected that the sulfa element in sulfasalazine was a anti-bacterial agent and that is why it was somewhat successful in helping with various IBS ailments. I wonder if I would have found it more helpful than colazal - but it is immaterial now. College already, huh? TIme flies. And congratulations to you and him. Where is he heading? Mara Quote Link to comment Share on other sites More sharing options...
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