Starting LDN

Personal experiences with various medications used to control the symptoms of Microscopic Colitis and related issues, should be posted here.

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Supergirl
Posts: 17
Joined: Mon Aug 28, 2017 11:55 am

Starting LDN

Post by Supergirl »

Well, I thought this might be a good place to document my experience taking LDN.

I feel that I have had a vast improvement to symptoms with diet modification; I follow an autoimmune protocol diet with some modifications for a damaged colon (such as not eating brassica, only cooked vegetables, limiting fruit). I have refused to take immodium because my stools aren't watery (in fact, today I noticed they veered toward type 2-3) and I have a reasonable amount of time to get to a bathroom without danger. I do have 3-4 bowel movements daily so am technically "active" in the disease process. I don't believe immodium would help my other symptoms (gas, bloating, pain/cramping). I'm not severe enough to take budesonide.

Thus, I am primarily looking for benefits in terms of inflammation, pain, and also mood, to compliment my diet modification.

I already am what you would call a lucid dreamer at times (I am consciously able to direct my dreams on occasion) and am known to have vivid dreams in general...so this could potentially be a wild ride with some of the reported side effects.

I am waiting for my supply to arrive from the pharmacy, and I will give regular updates here. My physician said I'm the first person she's had with MC trialing LDN, though I see there are others here who have done so. I want to be able to share and perhaps benefit others.
Erica
Little Blue Penguin
Little Blue Penguin
Posts: 39
Joined: Wed May 28, 2014 8:17 pm
Location: Canada

Post by Erica »

DEAR SUPERGIRL
I am so curious about you starting L.D.N/I was just asking Tex about it. Monique and others have had amazing results. I was told I am a candidate for it, but now I am trying completely gluten free, soy free etc.just got my results back from enterlab.I figured I will try diet for a few months,but I doubt I can be as lucky as some members who can be in remission just with diet. Usually I am good for 5 or 6 weeks and then my stomach gets weaker, no d. just weak.I am sure you will do great on it, and feel great as well it enhances your mood.Good luck and keep me posted.
Best Regards
Erica
Supergirl
Posts: 17
Joined: Mon Aug 28, 2017 11:55 am

Post by Supergirl »

Erica wrote:DEAR SUPERGIRL
I am so curious about you starting L.D.N/I was just asking Tex about it. Monique and others have had amazing results. I was told I am a candidate for it, but now I am trying completely gluten free, soy free etc.just got my results back from enterlab.I figured I will try diet for a few months,but I doubt I can be as lucky as some members who can be in remission just with diet. Usually I am good for 5 or 6 weeks and then my stomach gets weaker, no d. just weak.I am sure you will do great on it, and feel great as well it enhances your mood.Good luck and keep me posted.
Best Regards
Erica

Thanks for the note. I had great results with a modified AIP diet (which includes no soy, no gluten), and was low FODMAP for awhile, too, but I have been able to reintroduce foods like garlic, onion, sweet potatoes, raw fruits, etc. in small amounts. It was in stages...it took a good 6-8 weeks before I realized things had become much better. Give it time!
Supergirl
Posts: 17
Joined: Mon Aug 28, 2017 11:55 am

Post by Supergirl »

Well, I've taken my first dose of LDN. I had heard that symptoms included popping awake at 4 am or other ungodly hours and not being able to sleep, vivid dreams/nightmares. I did not feel my dreams were more vivid than usual, but I did remember them more easily. Usually unless I concentrate right as I'm waking up, I will forget them, but I remembered them as I was already up getting ready for the day. It was a pleasant dream about a beloved dog I had as a child/teen; the kind that makes you feel both wistful and comforted - so I am happy I remembered it.

I did pop awake at 6 am and had a hard time falling back asleep. I should have just got up for the day, but I wanted to see if I could fall back asleep for an hour - nope, not really.

I have been having normal formed stools for the last several days (although still occasional pain and other non-diarrhea symptoms); the morning after taking LDN I noticed I was a little more type 2-3. I am not sure if my LC is starting to veer into constipation territory, or if I just need to carefully increase the amount of veg I'm eating now that I'm feeling better (I never thought I'd say I'd kill for a brussels sprout...but man, one roasted in bacon drippings - I would!).

Otherwise, I feel good. No bloating yet today. I know people have widely varying experiences with how long it takes to notice effects, so I will just have to take one day at a time. It's probably just placebo, but I feel unusually stable (mood) today. I was in a rush to complete a project before a morning meeting, and I did not feel the usual chest tightness/stress/fear response as I worked.
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