• Welcome to Crohn's Forum, a support group for people with all forms of IBD. While this community is not a substitute for doctor's advice and we cannot treat or diagnose, we find being able to communicate with others who have IBD is invaluable as we navigate our struggles and celebrate our successes. We invite you to join us.

Help - Is this the LDN or something else?

In the last week my energy has nose-dived. Even just stirring a pan of rice noodles makes my arms feel tired. I've been significantly more depressed, and am sleeping longer. Did bloodwork to check B12, CBC, and iron levels yesterday, so will find out if either of those are the culprit in a few days hopefully. I started LDN on March 10th and besides the above have also had increased abd pain and diarrhea. Does any of this sound familiar to anyone?


Senior Member
Yup. I experienced this... Heard others offer similar stories. With LDN, you may get worse, even much worse, before you get better.

Now, whether that is directly attributable to LDN, or is a result of coming off other meds before switching to LDN, or whether the disease flares before the LDN change over has had enough time to do its thing.. your guess is as good as mine. But many of us went thru it... and if you can stick it out for 8 - 12 weeks, the odds are it will all work out.
Second Kev, my son went down hill after the first week or 2, was awful for 2 weeks right about the point I was going to call the GI he started to feel better and has continued to feel better.
Is your sleep perhaps being interrupted and you don't know it? In the beginning Ldn can cause sleep disturbances due to vivid dreams or even the surge of endorphins that happens about 4 hours after you take it. You are taking it at night right? Remember that Ldn suppresses endorphins which can make you feel kind of down if you're awake when it's happening. I took a small of my daughters when she first got it (i know crazy) just to see how it felt and it did make me feel very shut down and heavy. That's one of the advantages of taking it at night, you don't have to feel that. Either way stick with it. You are very much in the adjustment phase and it gets better!
I'll stick it out. It's the depression that's bothering me most. I've always struggled with it but it hasn't been this bad in awhile.
I'm sorry you are going through that, but also in a way kind of glad to hear...because then I know I'm not the only one. I started LDN in February and up until just the last week or so have gone through a pretty difficult period of depression and anxiety. And I've dealt with those issues all my life, but this seemed so gripping. I couldn't get my thoughts out of the "negativity trough". And that's been the only symptom.

David mentioned that I might be low in magnesium and that it could also contribute to this. While I haven't had any blood work done yet, I have started taking a liquid magnesium-calcium supplement and I think it seemed to lighten things up. I just have to remember to take it. But even so, without it, only in the last couple of days do I feel able to lift myself up and get motivated.

I'm on week 7. Oh, and I think I set myself up to feel better at the 4 week mark and when I didn't notice anything, that made me depressed too. But ones have encouraged me to hang in there...so I am. So hang in there, too!
I take LDN at night with my seroquel (which I've upped temporarily to help with the depression).

7 weeks? Ugh . . . I was hoping for 2-3 weeks max til things start normalizing again. I'm almost regretting putting off Humira. What magnesium-calcium supplement do you use? I've realized that I probably need to be taking extra calcium too, so might as well combine things when possible.
I take something called Calm (http://naturalvitality.com/natural-calm/). It's a combination of magnesium and calcium, to help absorption. But it's not a super high dosage. If I get my levels tested I may need to switch to an actual supplement. But I already take over 30 pills a day between all the other supplements I take so I couldn't handle one more. This is a flavored drink mix kind of thing.

Now, I have heard some people feel a difference after 4 weeks, so don't give up hope. Also, I'm not a good marker. All my blood work was perfect and I have no symptoms currently other than fatigue, but my colonoscopy and MRI showed active inflammation in the TI. So I baffled my GI. There isn't an easy way to tell if any med is doing me good apparently without a scope. :p

I think if I started out in a worse place, I'd have noticed something. But LDN's affect on me might be so subtle it will take a few weeks. At least that is what I am telling myself.
I have been on LDN for 19 weeks. Early on I couldn't sleep well, had dry mouth and felt really great! Then a few more weeks in it seem to go the other direction as I up'd the dose to 3 mg. I agree with the others...I think your body changes and adjusts and has to find its new groove. I think that takes some time. Good news is...we know it is working by having some effects at all. And these minor blahs are much better than the other scary meds I read about. I was diagnosed recently and LDN was my first choice as I ran across it by accident...Drs are against it, but sed and CRP are better -- IT IS WORKING! I think it is so important others remember it won't "cure" the disease - but it will get you going in the right direction. I really believe the diet changes and anti inflam supps are SO IMPORTANT along side LDN. Sorry for the rant and long note! ha I just am so hopeful for LDN and others taking it. Take care!


Senior Member

Quick question. Have you tried the 4.5mg dose? I ask because you have evidence that LDN is working, but I get the feeling that you aren't completely out of the woods yet. If you went up to the 4.5mg dose, it might be just the thing to have you feeling completely better. Just a thought. Worst case, the full dose bothers you, disrupts your sleep, or the vivid dreams recur, and you don't get the full improvement I mentioned. If that happens, just step back down to 3.0mg. Just another of my 'unasked for' opinions, so please feel free to tell me to mind my own beeswax. Just that, aside from the ped. trials, I've never seen any studies using less than 4.5mg. Unless someone like Dr Smith advised otherwise, I caution everybody trying LDN to go with the 'standard' 4.5mg dose if they can handle it. If they can't get thru the full dose, then step it down. I think that a doctor prescribing it for the 1st time may go with lower dose out of sheer caution, but not based on solid information. There just isn't enough hard evidence that I'm aware of to play around with a good thing. I mean, if the aim is to get the full effect, the full benefit, I think one has to go with the full dosage. Again, this is just my own opinion, OK
Well yesterday I feel like I had a turn around. I've been told I should do things that up my natural endorphin levels....like exercise for instance. But I hadn't had the energy. But I some friends invited us to the beach (sorry East Coasters) and we hiked some hills, and I have to say I was in such a good mood all day and didn't even get exhausted and cranky (fresh ocean air is bound to have a good effect!). Even went out to eat and had no bad reaction from it. So I'm going to try to keep some mild exercise going every other day until I can build up (I used to be a trail runner a few years ago). I just want to try to keep this little "endorphin rush" going. :)
I've been on it for 10 days now. Having vivid dreams and definitely more tired throughout the day, which is weird because i'm getting a good amount of sleep. Not really seeing any difference yet but i'm on LDN for the long run, giving it a full 6 months to determine it's effectiveness.