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LDN - Ulcerative Colitis & Crohn's

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Ulcerative Colitis
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Posted 11/10/2010 4:48 PM (GMT 0)
I was diagnosed with pans ulcerative colitis when I was 14 and had about 18 years bouncing in and out of remission. I am now 4 days into taking 4.5 of LDN, it has taken me a year and a half to convince my doctor to let me try it, Iam very excited!! I have noticed that everyone here seems to have started out on a lower dose working their way up so I hope thats not going to be a problem for me starting on the full dose. So far the only thing I have noticed is some insomnia and vivid dreams. My boyfriend was on 4mg of LDN for 1 month for his ankylosing spodylitis and had only a bit of an upset stomache in the morning that he said did not stay long so Im hopefull Ill have minor effects as well. I have been on sulfasalizine for most of the time but went off of it a couple of months ago because i have seen some of the long term effects it has on people. do not want to be one of those people. It would be so nice to actually go somewhere and not have to map out the bathroom route.
Posted 11/13/2010 9:24 PM (GMT 0)
Hi,
just a quick update. My son is doing very well. Still taking LDN in addition to Asacol and Azathioprine. Calprotectin levels now around 200 compared to 1000-2000 when he was just on Asacol and Azathioprine and Prednisol.

Also off Prednisone, which we enlisted the help of a homeopathy practitioner to get rid of. A couple of time limited treatments (some weeks each) after he was able to get rid of at least that "no good" drug.

Currently thus using alternative meds plus traditional meds:
Alternative: LDN, Probiotic capsules and Litozine
Traditional: Asacol and Azathioprine

Sorry to see little progress in the field of clinical trials for LDN. To a large extent I think the way medical research is now struggling more with economics and politics than science - that we are in effect seeing some kind of "dark ages" for medical research. Yes it progresses, but much too slow. To drive that point home I see even fresh med students adopting the "old school" way of thinking - so much so that LDN info is removed from sources like Wikipedia (because there are no clinical trials yet...) Sad but true.

With respect to diets that I see some commented about - yes, I think that also plays a part. We had samples from our son (blood, stool) analyzed by a german institute that found he was overly sensitive to gluten and eggs particularly, so have tried to keep him off that. Blood sampling done at public hospital to check for gluten-sensitivity did not show anything though. Eggs however we are quite certain triggered one flare before he began with LDN.

Anyway kid is doing tremendously well at the moment and we have even had him try eating scrambled eggs a couple of times and so far no reaction.

All the best to all.
Posted 11/14/2010 9:34 AM (GMT 0)
C'ant believe I posted on this thread well over a year ago! time goes to fast!

Just a quick question for you,
You say your son is on LDN and Azathioprine can you explain your thinking with this,I am on aza too which is an immunesupressent what would be the point in taking LDN TO boost your immune system at the same time.
Posted 12/7/2010 5:13 PM (GMT 0)
Well, it has now been 31 days since starting the Ldn. I have not noticed any major side effects nor have I noticed much improvement in my colitis. I am feeling a bit disheartened at the moment but still not going to give up on it yet. It's hard not to think about going back to the sulfasalazine for some relief.
Posted 12/7/2010 6:22 PM (GMT 0)
sydka,
We tried LDN for a month with no effect and gave up on it too for our daughter. However, I'm probably going to try it again since I think it works well for some very quickly and takes a little longer for others. How long have you been on the ssz?
AnnaG, I've read that you can't be on LDN or pred/AZA etc but apparently Jill Smith doesn't believe this to be the case. She believes they work differently in the body and apparently quite a few children and adults on her trials were immuno suppressed and still responded to LDN.
Posted 12/8/2010 5:44 AM (GMT 0)
I have been on ssz for about 15 years now and have never been fully in remission with it. I got colitis when I was 14, I'd like to think I'm due for a break :) on top of the Ldn I have also stopped drinking milk and coffee in hopes it will help. It helps to hear how well other people are responding to Ldn, it keeps my hopes up.

Post Edited (sydka) : 12/7/2010 11:00:46 PM (GMT-7)

Posted 12/8/2010 1:57 PM (GMT 0)
If you can handle it, I would say don't give up. I started LDN in October and I am doing a lot better but not 100% in remission yet. I tried it after my friend with UC had great success with it. She was on it for almost 4 months before it worked so I told myself I have to give it 3-4 months before I decide whether it helped or not. I keep thinking of it this way, it is not specifically treating our symptoms like Prednisone or the 5 ASAs are supposed to, it is trying to heal the body and fix what is broken with our immune systems, so that takes time.

One thing that really helped me in addition to the LDN was really limiting my sugar intake. I try to have almost no refined sugar except as a special treat.
Posted 1/6/2011 3:55 PM (GMT 0)
I started LDN in the fall of 2007. Have used it religiously since and am feeling terrific most of the time. To all considering LDN: never expect it to work immediately. LDN needs sometimes 5-9 months to work at it's optimal, but you will often find it that it will work gradually. The dose could very well start at 4.5 mg for adults and at 3.0 mg for kids, and most of us stops at this dose. It's important to mention though, you can use doses bigger than this, personally I am using 6.0 mg taken twice a day. 3.0 mg in the morning and 3.0 mg at night.

LDN could be used with other medications as well. Just try to find out what meds.
Posted 3/18/2012 9:09 AM (GMT 0)
Hi
I've been reading your post and have been looking into LDN for my son who is currently in hospital with a severe flare up. He is on iv hydrocortisone and azathiaprine and they are about to try him on infliximab. I feel if I mention LDN to the consultant he will just poo poo me. I was hping to give my son the LDN as well secretly but I think they must conflict as they are doing the opposite.
I am thinking of getting my son referred up to St Marks in London as at least it is a specialist centre.
The problem for my son is I think if he comes off the traditiional drugs he will become really ill.He has had to have 3 blood transfusions this time and his crp was over 300 when he went in so I think eveeything will rocket if he were to have a stage of transitioni with no drugs.
If you hear of a cosultant in the South who is more open-minded like yours please let me know.
Thanks so much.
Posted 3/18/2012 4:33 PM (GMT 0)
You don't have to go off the regular mess to take LDN. There is no conflict.
Posted 11/10/2013 5:18 AM (GMT 0)
Started ldn 3 Weeks Ago. I'm Up To 4.5Ml Now. My Crohns Has Stopped Dead In It's Tracks. I'm Still In Shock. I Eat And Wait For The Normal Pain And Bathroom Trips....But Nothing. I Go Twice A Day. No Cramps Or Anything. I Ate Fast Food This Weekend To See What Would Happen. Nothing. Crohns Has Taken The Last 10+ Years Of My Life From Me. And It literally Was Stopped Cold By Ldn. Its Like A Dream That I Haven't Woke Up From. I Stopped All Supplements. No More Liquid diet During Flares. Im Soooo Happy I WasTold about Ldn.
Posted 11/12/2013 12:49 AM (GMT 0)
Jimmy,

Welcome to the forum.
So glad to hear the LDN is helping you.

It's helped put me in remission with my UC.
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