I messaged Carriagehouse (Leslie) because I saw in and old thread that she was taking LDN and having success. I wanted to know if she was still having success. With her permission I am posting her response:
Hi Pat
Yes, I have been taking LDN for a little over a year now and my naturopath recommends I take it for life. I have had very good results, in conjunction with taking a good probiotic every day. I have eliminated gluten and oats. Initially I also eliminated dairy and raw vegetables. I gradually added those things back into my diet and I've been fine. In fact, I can't even remember the last time I had a flare, but I am very strict about the gluten and oats.
One thing to remember with LDN is that you cannot take it in conjunction with pain killers or anesthesia. The compound pharmacist recommended I discontinue it for 3 days prior to surgery I had, and then I didn't resume taking it until I was done with all pain meds. My diet was pretty bland, so thankfully I didn't have any LC issues.
I hope this answered your questions.
~ Leslie
Thanks again, Leslie, for responding so quickly! This is really good news!!!! Pat
Carriagehouse (Leslie) response re:LDN
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wmonique2
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carriage (Leslie)
Pat,
Thanks for inquiring. Those are indeed good news!
Monique
Thanks for inquiring. Those are indeed good news!
Monique
Diagnosed 2011 with LC. Currently on Low Dose Naltrexone (LDN)
But doesn't this imply that she doesn't actually need the LDN, or am I missing something?Leslie wrote:The compound pharmacist recommended I discontinue it for 3 days prior to surgery I had, and then I didn't resume taking it until I was done with all pain meds. My diet was pretty bland, so thankfully I didn't have any LC issues.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
That's a good question, Tex.
Some other important info I have found on a LDN support group:
This below was written by Dr. McCandless who is using LDN in autistic kids and some adults with various autoimmune diseases. She has many kids on LDN who have terrible gut issues and until the gut is cleaned up her kids will experience negative side-effects on LDN, this may also be why many MS'ers FAIL LDN.
What I have found out is that the response is
better for those taking LDN who remove casein and
gluten and sometimes soy also from their diets. As
naltrexone is an opioid antagonist, some of these
large peptides in wheat and milk create opioid-like
compounds in the brain and gut, and even the tiny bit
of naltrexone in the low-dose form can cause some problems.
I have almost all my gut kids on good probiotics and many also on
digestive enzymes to help absorption issues, and absolutely forbid any refined sugar (encourages yeast).
Some other important info I have found on a LDN support group:
This below was written by Dr. McCandless who is using LDN in autistic kids and some adults with various autoimmune diseases. She has many kids on LDN who have terrible gut issues and until the gut is cleaned up her kids will experience negative side-effects on LDN, this may also be why many MS'ers FAIL LDN.
What I have found out is that the response is
better for those taking LDN who remove casein and
gluten and sometimes soy also from their diets. As
naltrexone is an opioid antagonist, some of these
large peptides in wheat and milk create opioid-like
compounds in the brain and gut, and even the tiny bit
of naltrexone in the low-dose form can cause some problems.
I have almost all my gut kids on good probiotics and many also on
digestive enzymes to help absorption issues, and absolutely forbid any refined sugar (encourages yeast).
That brings up another reason why I suspect that Leslie may not/did not need the LDN — most of us (who have MC) cannot tolerate probiotics until after we are in remission, especially the more serious/persistent cases.
And regarding the success rates of Dr. McCandless mentioned in your post:
Many subjects with those issues respond to the removal of gluten and casein (and maybe soy) from their diet (without any LDN treatment). That sort of suggests that LDN success rates may be blown out of proportion because they are riding on the coattail of diet changes that actually provide the benefits (or at least the lion's share of benefits) that are responsible for the improvements in the health of those patients. And as we have also found, minimizing sugar is also necessary in most cases when treating MC by diet changes. So Dr. McCandless is basically recommending most of the dietary changes that we have found to be beneficial for treating MC (without LDN). If she also recommended minimizing fiber, her success rates might see additional improvement.
Tex
And regarding the success rates of Dr. McCandless mentioned in your post:
Many subjects with those issues respond to the removal of gluten and casein (and maybe soy) from their diet (without any LDN treatment). That sort of suggests that LDN success rates may be blown out of proportion because they are riding on the coattail of diet changes that actually provide the benefits (or at least the lion's share of benefits) that are responsible for the improvements in the health of those patients. And as we have also found, minimizing sugar is also necessary in most cases when treating MC by diet changes. So Dr. McCandless is basically recommending most of the dietary changes that we have found to be beneficial for treating MC (without LDN). If she also recommended minimizing fiber, her success rates might see additional improvement.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
Well, why not give it a try? As far as I'm aware, it's a relatively safe drug, provided that you avoid all narcotics, and you won't be needing an anesthetic anytime soon.
Have you already tried L-glutamine as an intestinal healing aid?
Tex
Have you already tried L-glutamine as an intestinal healing aid?
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
Yes, I've tried just about everything. Remember I have had this for almost 15 years. Of course, the first 7 years I was lied to and was told I had IBS even though later I saw the colonoscopy report which clearly stated MC. Diet, Pentasa, and Allegra have helped the most. But when I say diet just giving up gluten only took away the gas, bloating, and muscle aches. Like I stated before turkey and zucchini are it. I must be intolerant to one of those.
I did hear back from Carriagehouse ( Leslie ) and here is what she said with her permission:
Hi Pat
When I discontinued the LDN for surgery, I was eating jello, mashed potatoes and chicken broth. I didn't eat anything during that time period that would cause my LC to flare. I guess I would have to discontinue LDN for a period of time, while eating all the foods I currently enjoy, to find out if my LC symptoms return. Quite frankly, it took me so long to get my symptoms resolved that I'm not sure I'd want to risk it. I haven't noticed any adverse reactions to taking it, and in my opinion it is much preferable to other prescription alternatives. It is working for me, and I don't think you would have anything to lose by trying it, but you would have to make that determination. What has worked for me may not work for you. And to be fair, my continued avoidance of gluten and oats could be doing the trick without the use of LDN ..... one of these days I may be brave enough to discontinue it and if I do, I'll let you know what happens :)
~ Leslie
Then she messaged again:
I forgot to mention that it could be the probiotic I take, rather than the LDN, that has given me relief. My husband and I own a vitamin manufacturing company and the chemist who does the vitamin formulations explained that different probiotics affect different segments of the intestine. He also mentioned that a lot of probiotics you buy over the counter may not have been manufactured properly, shipped properly, or stored properly. By the time you buy them, many of the live elements have died, and what you have left provides little, if any benefit. I noticed that Whole Foods now has a refrigerated section for their probiotics. You might want to try a high quality probiotic prior to making the decision to try LDN. I take Ultimate Flora by Renew Life. It provides 80 billion live cultures per capsule "if prior to expiration, under recommended storage conditions." I keep it refrigerated and take one capsule every morning.
I also heard back from Linda in BC and with her permission here is what she said:
HI Pat:
No, I'm not taking LDN anymore. I only took it only for a few months, and I don't think it really did a lot to improve the colitis. I think the main thing it did was relax me, make me sleep like a baby(!) and help me handle stress better, and we know how much stress can play a part in our condition. I was off work when I took the LDN too ( I get the summer months off very year) and I've come to recognise that I am always much better in the summer because I am less stressed. I am continuing to use diet and Entocort (very sparingly), and for the most part I am moderately OK, seldom flaring unless I mess up on the diet, but never "firmly well" :-) either without the entocort. I need to take 1 capsule of Entocort about every 6- 8 days. Longer than that and my condition rapidly deteriorates, no matter what I eat. And if I'm really stressed with work, I have to take it more often, every 3-4 days ( 1 or 2 pills.) It is truly amazing stuff and without it I don't know what I would have done. The other thing that I think contributed a lot to my getting things under control, was getting allergy testing ( muscle testing ) and finding out I was intolerant of about 18 different foods, half of which I had no idea that I was. I see you have a hefty list of food intolerances too. My empathy goes out to you . Another thing that i know has helped me is getting acupressure (NAET) type treatments for the intolerances. They took the egg sensitivity away completely and lessened the other sensitivities . I also bought myself a self-treatment laser light that you use on pressure points and did those for about 6 months. I've been pretty good since then. I think a combination of most of these things has helped me improve but not the LDN . I’ve continued to improve despite stopping the LDN.
Regards, Linda
Hi again:
You are welcome to post my reply and please tell everyone that I send fond greetings and wish I had time to write myself, but I don't right now (or ever, it seems). I am taking an online course in addition to working fulltime and when I write, I spend hours editing and rediting a post... sigh! just can't afford the time I know I'd spend if I started posting again. I do come on from time to time to read posts though, and I miss the community and support of this forum a lot.
I wanted to send you this link of what I posted about 6 months after I first started taking LDN, (when I tried it again after a break), in case you hadn't seen it.
Hope this link works...
http://www.perskyfarms.com/phpBB2/viewt ... hlight=ldn
Regards,
Linda
I have appointments with my GI doc and my internal med doc who prescribes my bioidentical hormones this week. Hopefully one of them will give me a script. I know I can get it from overseas pharm but I would rather get it here if possible. I called the compounding pharmacy and they gave me the names of another doc I can see if the others won't cooperate. They do dispense LDN so yes I plan on trying it. If it doesn't work then I may have to resort to trying Entocort again. It just helped a little several years ago but my diet was not so limited.
Thanks, Tex, for this forum, your book, your never ending patience and advice. Somehow, someday, I am going to get my life back.
Pat
I did hear back from Carriagehouse ( Leslie ) and here is what she said with her permission:
Hi Pat
When I discontinued the LDN for surgery, I was eating jello, mashed potatoes and chicken broth. I didn't eat anything during that time period that would cause my LC to flare. I guess I would have to discontinue LDN for a period of time, while eating all the foods I currently enjoy, to find out if my LC symptoms return. Quite frankly, it took me so long to get my symptoms resolved that I'm not sure I'd want to risk it. I haven't noticed any adverse reactions to taking it, and in my opinion it is much preferable to other prescription alternatives. It is working for me, and I don't think you would have anything to lose by trying it, but you would have to make that determination. What has worked for me may not work for you. And to be fair, my continued avoidance of gluten and oats could be doing the trick without the use of LDN ..... one of these days I may be brave enough to discontinue it and if I do, I'll let you know what happens :)
~ Leslie
Then she messaged again:
I forgot to mention that it could be the probiotic I take, rather than the LDN, that has given me relief. My husband and I own a vitamin manufacturing company and the chemist who does the vitamin formulations explained that different probiotics affect different segments of the intestine. He also mentioned that a lot of probiotics you buy over the counter may not have been manufactured properly, shipped properly, or stored properly. By the time you buy them, many of the live elements have died, and what you have left provides little, if any benefit. I noticed that Whole Foods now has a refrigerated section for their probiotics. You might want to try a high quality probiotic prior to making the decision to try LDN. I take Ultimate Flora by Renew Life. It provides 80 billion live cultures per capsule "if prior to expiration, under recommended storage conditions." I keep it refrigerated and take one capsule every morning.
I also heard back from Linda in BC and with her permission here is what she said:
HI Pat:
No, I'm not taking LDN anymore. I only took it only for a few months, and I don't think it really did a lot to improve the colitis. I think the main thing it did was relax me, make me sleep like a baby(!) and help me handle stress better, and we know how much stress can play a part in our condition. I was off work when I took the LDN too ( I get the summer months off very year) and I've come to recognise that I am always much better in the summer because I am less stressed. I am continuing to use diet and Entocort (very sparingly), and for the most part I am moderately OK, seldom flaring unless I mess up on the diet, but never "firmly well" :-) either without the entocort. I need to take 1 capsule of Entocort about every 6- 8 days. Longer than that and my condition rapidly deteriorates, no matter what I eat. And if I'm really stressed with work, I have to take it more often, every 3-4 days ( 1 or 2 pills.) It is truly amazing stuff and without it I don't know what I would have done. The other thing that I think contributed a lot to my getting things under control, was getting allergy testing ( muscle testing ) and finding out I was intolerant of about 18 different foods, half of which I had no idea that I was. I see you have a hefty list of food intolerances too. My empathy goes out to you . Another thing that i know has helped me is getting acupressure (NAET) type treatments for the intolerances. They took the egg sensitivity away completely and lessened the other sensitivities . I also bought myself a self-treatment laser light that you use on pressure points and did those for about 6 months. I've been pretty good since then. I think a combination of most of these things has helped me improve but not the LDN . I’ve continued to improve despite stopping the LDN.
Regards, Linda
Hi again:
You are welcome to post my reply and please tell everyone that I send fond greetings and wish I had time to write myself, but I don't right now (or ever, it seems). I am taking an online course in addition to working fulltime and when I write, I spend hours editing and rediting a post... sigh! just can't afford the time I know I'd spend if I started posting again. I do come on from time to time to read posts though, and I miss the community and support of this forum a lot.
I wanted to send you this link of what I posted about 6 months after I first started taking LDN, (when I tried it again after a break), in case you hadn't seen it.
Hope this link works...
http://www.perskyfarms.com/phpBB2/viewt ... hlight=ldn
Regards,
Linda
I have appointments with my GI doc and my internal med doc who prescribes my bioidentical hormones this week. Hopefully one of them will give me a script. I know I can get it from overseas pharm but I would rather get it here if possible. I called the compounding pharmacy and they gave me the names of another doc I can see if the others won't cooperate. They do dispense LDN so yes I plan on trying it. If it doesn't work then I may have to resort to trying Entocort again. It just helped a little several years ago but my diet was not so limited.
Thanks, Tex, for this forum, your book, your never ending patience and advice. Somehow, someday, I am going to get my life back.
Pat
Pat,
Those personal experiences contain a lot of valuable insight, and of course that goes double for your own hard-earned experiences.
And I agree that with your more restricted diet now, Entocort should be more effective. And after things settle down for awhile, you might be able to taper the dosage down to a very low maintenance rate, and eventually settle on a combination that works well for you, similar to what others have done. But maybe the LDN will work, and the backup plan won't even be necessary.
I'm guessing that this is the link that Linda intended to post, but unfortunately she copied a shortened URL, rather than the original, full URL:
Tapering off Entocort using LDN
You're more than welcome of course, and thank you for your kind words. I just wish that we knew more about innovative ways to control the disease. I have no doubt that with your tenacity, you will indeed find a way to get your life back. Motivated people find solutions, and you are clearly very motivated.
Tex
Those personal experiences contain a lot of valuable insight, and of course that goes double for your own hard-earned experiences.
And I agree that with your more restricted diet now, Entocort should be more effective. And after things settle down for awhile, you might be able to taper the dosage down to a very low maintenance rate, and eventually settle on a combination that works well for you, similar to what others have done. But maybe the LDN will work, and the backup plan won't even be necessary.
I'm guessing that this is the link that Linda intended to post, but unfortunately she copied a shortened URL, rather than the original, full URL:
Tapering off Entocort using LDN
You're more than welcome of course, and thank you for your kind words. I just wish that we knew more about innovative ways to control the disease. I have no doubt that with your tenacity, you will indeed find a way to get your life back. Motivated people find solutions, and you are clearly very motivated.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
Pat,
I picked up my LDN prescription tonight. My insurance (BCBS PPO) didn't cover it, so I'm paying $50 for a 30-day supply. I'm collecting a urine sample for an Organic Acids test in the morning, so I plan to start the LDN (2.25 mgs) tomorrow night. I'll keep everyone posted, although you should know I currently don't have bothersome MC symptoms because I'm on the very restrictive autoimmune paleo diet and I'm on 10 mgs of prednisone. I'm taking LDN for my rash. The good thing is I will be able to SEE my results and hopefully stop itching!!
Regarding Linda's experience, I noticed she only took a max dose of 1.25 or 1.5, which my doctor would argue is not effective. It's where people sometimes start, but it would not be considered a therapeutic dose. LDN is said to help autoimmune diseases, and although I and many here would argue MC is autoimmune, there may be people here where the LC is truly only the result or food sensitivities or medications, without an underlying autoimmune process.
Regarding taking a break for surgery or to use opiate pain killers, I've read reports of people starting to have rebound symptoms after 5 days or so.
I picked up my LDN prescription tonight. My insurance (BCBS PPO) didn't cover it, so I'm paying $50 for a 30-day supply. I'm collecting a urine sample for an Organic Acids test in the morning, so I plan to start the LDN (2.25 mgs) tomorrow night. I'll keep everyone posted, although you should know I currently don't have bothersome MC symptoms because I'm on the very restrictive autoimmune paleo diet and I'm on 10 mgs of prednisone. I'm taking LDN for my rash. The good thing is I will be able to SEE my results and hopefully stop itching!!
Regarding Linda's experience, I noticed she only took a max dose of 1.25 or 1.5, which my doctor would argue is not effective. It's where people sometimes start, but it would not be considered a therapeutic dose. LDN is said to help autoimmune diseases, and although I and many here would argue MC is autoimmune, there may be people here where the LC is truly only the result or food sensitivities or medications, without an underlying autoimmune process.
Regarding taking a break for surgery or to use opiate pain killers, I've read reports of people starting to have rebound symptoms after 5 days or so.
1987 Mononucleosis (EBV)
2004 Hypomyopathic Dermatomyositis
2009 Lymphocytic Colitis
2010 GF/DF/SF Diet
2014 Low Dose Naltrexone
2004 Hypomyopathic Dermatomyositis
2009 Lymphocytic Colitis
2010 GF/DF/SF Diet
2014 Low Dose Naltrexone
Here's a long thread with references to information on LDN treating Crohn's disease:
http://www.crohnsforum.com/showthread.php?t=31142
And here's a patient video testimonial:
https://www.youtube.com/watch?v=D2YwXhwKAYg
http://www.crohnsforum.com/showthread.php?t=31142
And here's a patient video testimonial:
https://www.youtube.com/watch?v=D2YwXhwKAYg
1987 Mononucleosis (EBV)
2004 Hypomyopathic Dermatomyositis
2009 Lymphocytic Colitis
2010 GF/DF/SF Diet
2014 Low Dose Naltrexone
2004 Hypomyopathic Dermatomyositis
2009 Lymphocytic Colitis
2010 GF/DF/SF Diet
2014 Low Dose Naltrexone
Took my first 2.25 mg last night. Slept just fine,and don't recall having any dreams (I never do). I did wake up with a heavy-headed, groggy feeling, but once I was upright, that slowly changed to an overall jittery feeling, like the feelings I had on higher doses of prednisone. I think my pulse is slightly elevated compared to my almost dead norm, so I'm not complaining. So far, so good!
1987 Mononucleosis (EBV)
2004 Hypomyopathic Dermatomyositis
2009 Lymphocytic Colitis
2010 GF/DF/SF Diet
2014 Low Dose Naltrexone
2004 Hypomyopathic Dermatomyositis
2009 Lymphocytic Colitis
2010 GF/DF/SF Diet
2014 Low Dose Naltrexone
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wmonique2
- Rockhopper Penguin
- Posts: 1048
- Joined: Fri Aug 03, 2012 9:06 am
- Location: Georgia, U.S
- Contact:
carriage (Leslie) response...
Z.,
wishing you much success
Monique
wishing you much success
Monique
Diagnosed 2011 with LC. Currently on Low Dose Naltrexone (LDN)