Guest guest Posted June 18, 2010 Report Share Posted June 18, 2010 At 10:40 AM 6/18/2010, you wrote: I switched to our current GI because of his openness to probiotics which I took as a hopeful sign of being open to alternative treatments. I am hoping he is open to this or has at least heard of it. If he has heard of it, why of why would he not mention it? The likelihood is that very few doctors today will have heard of LDN because most doctors rely on pharmaceutical company representatives for their information about drugs. Naltrexone is an out of patent drug, which means that the pharmaceutical companies won't make buckets off it if a new use is discovered. LDN stands for low dose naltrexone. The following article is worth pointing your doctor at. Naltrexone Therapy Improves Activity and Promotes Mucosal Healing in Active Crohn’S Disease: a Placebo-Controlled Trial Jill P. 1, I. Bingaman1, Francesca Ruggiero2, T. Mauger3, Aparna Mukherjee1, O. McGovern1, Ian S. Zagon4 1. GI and Hepatology, Medicine, Pennsylvania State University, Hershey, PA, United States, 2. Pathology, Pennsylvania State University, Hershey, PA, United States, 3. Public Health Sciences, Pennsylvania State University, Hershey, PA, United States, 4. Neural & Behavioral Sciences, Pennsylvania State University, Hershey, PA, United States Background: Accumulating evidence supports a role for endogenous opioid peptides in the development or perpetuation of inflammation. It is hypothesized that the endogenous opioid system plays a role in inflammatory bowel disease, and disruption of the opioid-opioid receptor interaction will reverse inflammation and promote mucosal healing. Methods: A randomized placebo-controlled double blinded study was designed to test the efficacy and safety of an opioid antagonist, naltrexone, in adults with active Crohn’s disease. Patients with confirmed Crohn’s disease and a Crohn’s Disease Activity Index score (CDAI) of at least 220 were randomized to naltrexone (4.5 mg daily) or placebo by mouth daily for 12-weeks. Subsequently, those who had received placebo were treated with naltrexone and those randomized to naltrexone continued on naltrexone for an additional 12 weeks to assess safety and maintenance of response for extended duration. Colonoscopies with biopsies were performed at baseline, weeks-12, and 24 to determine endoscopic and histologic scores by persons blinded to the treatments. The primary outcomes included the CDAI, endoscopic, and histologic inflammatory scores. Other outcomes included quality of life (QOL) according to the IBDQ and SF-36 surveys, and laboratory tests for safety. Results: Forty patients were enrolled and randomized into the study. Baseline CDAI scores (346±16.4) indicated moderate to severe disease. CDAI scores decreased significantly from baseline (p<0.001) in those treated with naltrexone, but not in placebo treated controls. Eighty-two percent of the naltrexone-treated subjects had at least a 70-point drop in the CDAI score indicative of a response and 45% achieved clinical remission (CDAI < 150). Endoscopy and histology inflammatory scores improved in naltrexone treated subjects (p=0.0019) with evidence of decreased mucosal inflammation, and restored crypt architecture. No endoscopic or histological change was found in placebo treated controls. No significant changes were noted in laboratory parameters or QOL surveys. Patients in the placebo group reported increased fatigue compared to naltrexone treated subjects (p=0.04) and two naltrexone-treated subjects had transient mild elevation in liver transaminases which resolved without interruption of therapy. Conclusion: Naltrexone induces mucosal healing and decreases CDAI scores in subjects with moderate to severe Crohn’s disease with minimal side effects recorded. Strategies to alter the endogenous opioid system provide promise for a novel treatment of inflammatory bowel disease in the future. (Supported by BMRP IBD-0180R and NIH DK073614). — Marilyn New Orleans, Louisiana, USA Undiagnosed IBS since 1976, SCD since 2001 Darn Good SCD Cook No Human Children Shadow & Sunny Longhair Dachshund Babette the Foundling Beagle Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 18, 2010 Report Share Posted June 18, 2010 Hmmm…given that Penn State Hershey is close to being in my back yard, I will most definitely be contacting him regarding this. Someone just told me recently that Hershey Medical is a hot spot for IBD issues. It sounds like this drug in tandem with SCD has potential for significant improvement. Eileen Cawood email: parvus@... From: BTVC-SCD [mailto:BTVC-SCD ] On Behalf Of Wizop Marilyn L. Alm Sent: Friday, June 18, 2010 3:48 PM To: BTVC-SCD Subject: Re: LDN At 10:40 AM 6/18/2010, you wrote: I switched to our current GI because of his openness to probiotics which I took as a hopeful sign of being open to alternative treatments. I am hoping he is open to this or has at least heard of it. If he has heard of it, why of why would he not mention it? The likelihood is that very few doctors today will have heard of LDN because most doctors rely on pharmaceutical company representatives for their information about drugs. Naltrexone is an out of patent drug, which means that the pharmaceutical companies won't make buckets off it if a new use is discovered. LDN stands for low dose naltrexone. The following article is worth pointing your doctor at. Naltrexone Therapy Improves Activity and Promotes Mucosal Healing in Active Crohn’S Disease: a Placebo-Controlled Trial Jill P. 1, I. Bingaman1, Francesca Ruggiero2, T. Mauger3, Aparna Mukherjee1, O. McGovern1, Ian S. Zagon4 1. GI and Hepatology, Medicine, Pennsylvania State University, Hershey, PA, United States, 2. Pathology, Pennsylvania State University, Hershey, PA, United States, 3. Public Health Sciences, Pennsylvania State University, Hershey, PA, United States, 4. Neural & Behavioral Sciences, Pennsylvania State University, Hershey, PA, United States Background: Accumulating evidence supports a role for endogenous opioid peptides in the development or perpetuation of inflammation. It is hypothesized that the endogenous opioid system plays a role in inflammatory bowel disease, and disruption of the opioid-opioid receptor interaction will reverse inflammation and promote mucosal healing. Methods: A randomized placebo-controlled double blinded study was designed to test the efficacy and safety of an opioid antagonist, naltrexone, in adults with active Crohn’s disease. Patients with confirmed Crohn’s disease and a Crohn’s Disease Activity Index score (CDAI) of at least 220 were randomized to naltrexone (4.5 mg daily) or placebo by mouth daily for 12-weeks. Subsequently, those who had received placebo were treated with naltrexone and those randomized to naltrexone continued on naltrexone for an additional 12 weeks to assess safety and maintenance of response for extended duration. Colonoscopies with biopsies were performed at baseline, weeks-12, and 24 to determine endoscopic and histologic scores by persons blinded to the treatments. The primary outcomes included the CDAI, endoscopic, and histologic inflammatory scores. Other outcomes included quality of life (QOL) according to the IBDQ and SF-36 surveys, and laboratory tests for safety. Results: Forty patients were enrolled and randomized into the study. Baseline CDAI scores (346±16.4) indicated moderate to severe disease. CDAI scores decreased significantly from baseline (p<0.001) in those treated with naltrexone, but not in placebo treated controls. Eighty-two percent of the naltrexone-treated subjects had at least a 70-point drop in the CDAI score indicative of a response and 45% achieved clinical remission (CDAI < 150). Endoscopy and histology inflammatory scores improved in naltrexone treated subjects (p=0.0019) with evidence of decreased mucosal inflammation, and restored crypt architecture. No endoscopic or histological change was found in placebo treated controls. No significant changes were noted in laboratory parameters or QOL surveys. Patients in the placebo group reported increased fatigue compared to naltrexone treated subjects (p=0.04) and two naltrexone-treated subjects had transient mild elevation in liver transaminases which resolved without interruption of therapy. Conclusion: Naltrexone induces mucosal healing and decreases CDAI scores in subjects with moderate to severe Crohn’s disease with minimal side effects recorded. Strategies to alter the endogenous opioid system provide promise for a novel treatment of inflammatory bowel disease in the future. (Supported by BMRP IBD-0180R and NIH DK073614). — Marilyn New Orleans, Louisiana, USA Undiagnosed IBS since 1976, SCD since 2001 Darn Good SCD Cook No Human Children Shadow & Sunny Longhair Dachshund Babette the Foundling Beagle Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 18, 2010 Report Share Posted June 18, 2010 It is. Quite a few of us here also use LDN and feel it is a good compliment to the diet. Someone just told me recently that Hershey Medical is a hot spot for IBD issues. It sounds like this drug in tandem with SCD has potential for significant improvement. Eileen Cawood Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 18, 2010 Report Share Posted June 18, 2010 Well that makes sense because it looks like a lot of the LDN research is being done at Penn State. I went to PSU, and Hershey is their teaching hospital -Joanna SCD 9/2009, Crohn's 1992, 30mg Prednisone > > It is. Quite a few of us here also use LDN and feel it is a good > compliment to the diet. > > > Someone just told me recently that Hershey Medical is a hot spot for > IBD issues. It sounds like this drug in tandem with SCD has potential > for significant improvement. > > Eileen Cawood > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 16, 2010 Report Share Posted July 16, 2010 Thanks , Is it only used with UC and Crohns and severe autoimmune disease? I will have to look up to see if it is used for mast cell disorders. Very interesting and I never heard of it. Have a good day, June > > > > > > > Hi all, > > > > What is LDN? > > > > Thanks, > > June > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 16, 2010 Report Share Posted July 16, 2010 I'm not sure what ailments it's best used for. Maybe someone else here knows?~ Thanks , Is it only used with UC and Crohns and severe autoimmune disease? I will have to look up to see if it is used for mast cell disorders. Very interesting and I never heard of it. Have a good day, June > > > > > > > Hi all, > > > > What is LDN? > > > > Thanks, > > June > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 16, 2010 Report Share Posted July 16, 2010 http://www.lowdosenaltrexone.org/index.htm#What_diseases_has_it_been_useful_for and http://www.webspawner.com/users/ldnforcrohns/index.html Carol CD 22 yrs SCD 5 yrs LDN cream 1 yr From: BTVC-SCD [mailto:BTVC-SCD ] On Behalf Of Haven I'm not sure what ailments it's best used for. Maybe someone else here knows? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 16, 2010 Report Share Posted July 16, 2010 LDN works to improve your immune system, so it becomes able once again to fight immune and auto-immune diseases/problems you have. Of course, like anything else, it doesn't work 100% of the time for 100% of the people, but it sure is worth a try in my opinion. And it dovetails very nicely with SCD. I'm not sure what ailments it's best used for. Maybe someone else here knows? ~ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 10, 2010 Report Share Posted August 10, 2010 Hi all, I started LDN a week ago or so and all I notice is that I am more depressed than ever. Is this a side effect? Thanks, June Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 10, 2010 Report Share Posted August 10, 2010 What is LDN? Hi all,I started LDN a week ago or so and all I notice is that I am more depressed than ever. Is this a side effect?Thanks,June Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 10, 2010 Report Share Posted August 10, 2010 Low dose naltrexone. > > > Hi all, > > > > I started LDN a week ago or so and all I notice is that I am more > > depressed than ever. Is this a side effect? > > > > Thanks, > > June > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 10, 2010 Report Share Posted August 10, 2010 What does it do? Low dose naltrexone.> > > Hi all,> >> > I started LDN a week ago or so and all I notice is that I am more > > depressed than ever. Is this a side effect?> >> > Thanks,> > June> >> >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 10, 2010 Report Share Posted August 10, 2010 No, in fact, the opposite, usually puts people in a better frame of mind - because of the endorphins in the body. However, if you have yeast that will block the LDN from working completely. So I would check that out. It is always possible if you have several layers of disease, the LDN won't work properly however. Mara > Hi all, > > I started LDN a week ago or so and all I notice is that I am more depressed than ever. Is this a side effect? > > Thanks, > June > > > > ------------------------------------ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 10, 2010 Report Share Posted August 10, 2010 I do have yeast. Does honey make it worse. I have been having about 2 tsp daily. > > > Hi all, > > > > I started LDN a week ago or so and all I notice is that I am more depressed than ever. Is this a side effect? > > > > Thanks, > > June > > > > > > > > ------------------------------------ > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 10, 2010 Report Share Posted August 10, 2010 yes it makes it worse - stay away!! from fruit and high carb veges too eileen 2 1/2 years scd > > > > > Hi all, > > > > > > I started LDN a week ago or so and all I notice is that I am more depressed than ever. Is this a side effect? > > > > > > Thanks, > > > June > > > > > > > > > > > > ------------------------------------ > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 10, 2010 Report Share Posted August 10, 2010 Eileen, Thanks for writing. Ok, so what can I eat? I can't eat any cheese or yogurt since I get anaphylactic reactions to them. I can't eat egg whites either because of reactions. I can't have any nuts now cause it makes me blow up like a balloon. Are you talking about carrots and squash? No green apples or berries? I was using stevia but now see that is illegal. No grape jello? I might as well jump off a bridge right now. June > > > > > > > Hi all, > > > > > > > > I started LDN a week ago or so and all I notice is that I am more depressed than ever. Is this a side effect? > > > > > > > > Thanks, > > > > June > > > > > > > > > > > > > > > > ------------------------------------ > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 10, 2010 Report Share Posted August 10, 2010 Hi June, What dosage did you start with? Some people do fine starting at the max of 4.5 mg but many do not. I started at 1.0 and took months to get up to my current dose of 3.0. I'm about ready, after two months, to up it again. You might do better on a low dose for awhile and sneak it up. Hi all, I started LDN a week ago or so and all I notice is that I am more depressed than ever. Is this a side effect? Thanks, June Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 10, 2010 Report Share Posted August 10, 2010 Hi , I started at 1.5 mg and I'm still there. I do sleep better at night though. Thanks, June > > > Hi June, > What dosage did you start with? Some people do fine starting at the > max of 4.5 mg but many do not. I started at 1.0 and took months to > get up to my current dose of 3.0. I'm about ready, after two months, > to up it again. You might do better on a low dose for awhile and sneak it up. > > > Hi all, > I started LDN a week ago or so and all I notice is that I am more > depressed than ever. Is this a side effect? > Thanks, > June > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 10, 2010 Report Share Posted August 10, 2010 me singing " wish you would step back from that ledge my friend " - sorry LOL you'll find stuff - and you'll add stuff back as you fight the yeast - yours is a bit trickier - I gave up carrots and butternut squash sadly - I eat zuc and spinach daily - i should add more - never was a big vege fan I do eat egg whites ,nuts (can feed yeast) no cheese except dccc - and I do have goat yog plus meats and I was able to put back cooked berries - not a jello fan here but no i wouldn't recommend jello with grape juice - also avocados are very filling I find - hope this helps - others will chime in i'm sure - i'll keep brainstorming eileen > > > > > > > > > Hi all, > > > > > > > > > > I started LDN a week ago or so and all I notice is that I am more depressed than ever. Is this a side effect? > > > > > > > > > > Thanks, > > > > > June > > > > > > > > > > > > > > > > > > > > ------------------------------------ > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 10, 2010 Report Share Posted August 10, 2010 No green apples or berries? Hi June! Usually green apples and berries are fine for a yeast diet. Something to consider is an idea that posted a while back. Her doctor told her that restricting sugar so severely could make the yeast evolve into even more virulent forms. Therefore, putting more emphasis on KILLING the yeast rather than starving them would be in order. That's more how I like to look at it, but whether that's just from me not wanting to give up fruit, I don't know. I do know that there's really no way to know what's going on inside our bodies, so you just have to find what works for you. If you don't react to carrots, berries, and green apples, I would say go for it, and focus on killing the yeast with things like s. boulardii (a friendly yeast), oil of oregano, probiotics, garlic, virgin coconut oil, and other things of that nature. However, if you feel that you do better (as Eileen does) eliminating all foods with high sugar content, then I would stick with that. Cheers!Alyssa 16 yo UC April 2008, dx Sept 2008SCD June 2009 (restarted)Prednisone 10 mg 1x per day (trying to wean!!!!) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 10, 2010 Report Share Posted August 10, 2010 At 03:48 PM 8/10/2010, you wrote: Ok, so what can I eat? I can't eat any cheese or yogurt since I get anaphylactic reactions to them. I can't eat egg whites either because of reactions. I can't have any nuts now cause it makes me blow up like a balloon. Are you talking about carrots and squash? No green apples or berries? I was using stevia but now see that is illegal. No grape jello? I might as well jump off a bridge right now. Meats. Vegetables. I wouldn't eliminate berries entirely, but seeds could be an issue. What ARE you able to tolerate at the current time? — Marilyn New Orleans, Louisiana, USA Undiagnosed IBS since 1976, SCD since 2001 Darn Good SCD Cook No Human Children Shadow & Sunny Longhair Dachshund Babette the Foundling Beagle Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 10, 2010 Report Share Posted August 10, 2010 Yeah, honey will make it worse. S. boulardii - working up to several a day, on an empty stomach will help. I'd probably stop the LDN meanwhile. It just won't work until the yeast is under better control. Mara > I do have yeast. Does honey make it worse. I have been having about 2 tsp daily. > > >> >>> Hi all, >>> >>> I started LDN a week ago or so and all I notice is that I am more depressed than ever. Is this a side effect? >>> >>> Thanks, >>> June >>> >>> >>> >>> ------------------------------------ >>> >>> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 10, 2010 Report Share Posted August 10, 2010 I tried that, had a terrible reacton to Saccaromyces boulardi. I have to stop the LDN. Felt suicidally depressed today. Need to up my thyroid again to what I was taking before. Thanks, June > >> > >>> Hi all, > >>> > >>> I started LDN a week ago or so and all I notice is that I am more depressed than ever. Is this a side effect? > >>> > >>> Thanks, > >>> June > >>> > >>> > >>> > >>> ------------------------------------ > >>> > >>> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 10, 2010 Report Share Posted August 10, 2010 Hi Marilyn, I can't do seeds. I really need help formulating a diet plan, since I work full time and am having trouble. Can I eat all vegetables? Thanks, June > >Ok, so what can I eat? I can't eat any cheese or > >yogurt since I get anaphylactic reactions to > >them. I can't eat egg whites either because of > >reactions. I can't have any nuts now cause it > >makes me blow up like a balloon. Are you talking about carrots and squash? > >No green apples or berries? I was using stevia > >but now see that is illegal. No grape jello? > >I might as well jump off a bridge right now. > > Meats. Vegetables. I wouldn't eliminate berries > entirely, but seeds could be an issue. > > What ARE you able to tolerate at the current time? > > > — Marilyn > New Orleans, Louisiana, USA > Undiagnosed IBS since 1976, SCD since 2001 > Darn Good SCD Cook > No Human Children > Shadow & Sunny Longhair Dachshund > Babette the Foundling Beagle > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 10, 2010 Report Share Posted August 10, 2010 What does LDN do and for? Does several layers of disease means different illnesses Just want to get rid of todays pain that started again(tendon, extreme tire, slept took vite C and ate, still side pain at waist. Have yeast also and when do honey or sweet(date..) I also do spices like cinn.,cloves.. to kill off stuff or parasites, wonder if really helps. Some avocados are good, though some varieties are fibrous so make smoothies with them. Thank you Lynn D > >> > >>> Hi all, > >>> > >>> I started LDN a week ago or so and all I notice is that I am more depressed than ever. Is this a side effect? > >>> > >>> Thanks, > >>> June > >>> > >>> > >>> > >>> ------------------------------------ > >>> > >>> Quote Link to comment Share on other sites More sharing options...
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