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Who's tried LDN, and what are your results? PART II

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Ulcerative Colitis
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Posted 9/5/2011 9:04 PM (GMT 0)
Continued from:

https://www.healingwell.com/community/default.aspx?f=38&m=2157045&p=6

Posted 9/7/2011 11:22 PM (GMT 0)
notsosicklygirl,

Thanks for opening another thread. :-)

Posted 9/7/2011 11:26 PM (GMT 0)
This is what I asked in the Part I thread, that notsosicklygirl was nice enough to continue here.

Hi There,

I'm curious as to who's tried LDN on this forum? There have been a few different posts across the boards, and I think it would be helpful to gather the information under one post. If you've already given your info under another post, I greatly appreciate your patience in telling us your story again, so we can all help one another, so I'd like to know:

1) Which type of LDN have your tried , i.e. oral and with which filler? or Transdermal LDN?

2) What dosage? And how long have you been taking it?

3) Taking it for which condition: UC or Crohns?

4) Any side efffects?

5) What results have you gotten from taking it?

6) What diet are you on: SCD, low residue, or any other?

7) Are you on any other supplements, meds, rectal meds, maintenance meds along with the LDN?

8) How did you get it prescribed: through your regular GI or GP or did you have to go to an alternative doc?

Looking forward to hearing from all of you :-) . Thank you.

Posted 9/11/2011 10:58 AM (GMT 0)
Mom2girls,

How have you been since starting the LDN? I go tomorrow for my appt and I've been thinking about you all week!

I really hope you're seeing some improvement. Praying for you!
Posted 9/11/2011 10:15 PM (GMT 0)
mamabee,

How are you doing with your supplements? Which ones are you doing now?

How are you feeling?

Good luck with your doctor's appt. tomorrow.

Posted 9/11/2011 11:35 PM (GMT 0)
Hey mamabee! I am actually doing really good. I still have blood and D, but the urgency and frequency are down ALOT! I'm also starting to have more formed stool (yay!!!!). I really feel like I'm on the mend, it's just taking time......and that is good vonsidering I'm down to 10mg of Prednisone from 40mg. I started LDN two weeks ago and started feeling better on day 11 and every day is better. I'm still having problems with exhaustion though. I have no energy, so I'm hoping that gets better with time! Thanks so much for checking in on me! I'm so glad you get to talk with the doctor tomorrow and start LDN! Let me know how it goes!
Posted 9/12/2011 11:36 PM (GMT 0)
InSoFla: I am doing well...still on 40mg of Prednisone after that bad week, but I'm starting LDN tonight! It's the oral at 4.5mg (which I'm kind of nervous b/c it's the highest dose, what do you think?) and its' filler is acidophilus. He also wants me to start L-Glutamine and Zinc. I updated my signature to add all the supplemens I'm taking now. The past 2 days I've been feeling really great. We actually made a day out of my doctor's appt in NYC and brought our 3 yr old. So much fun...miss the freedom of that and can't wait to have it back! He wants me to stay on the 40mg of Pred for another 2 wks until the LDN is in my system and then start weaning by 5mg a week. So excited to see what lies ahead! Thanks for checking in :)

Mom2girls: I am so happy to hear you're seeing improvement! I think the exhaustion is definitely from tapering down on the Pred b/c when I tried to go down to 30, I was exhausted by the end of the day! The ONLY thing I"ll miss from Pred is the energy lol. How many mg of LDN are you on? Have you noticed any side effects?
Posted 9/13/2011 1:33 AM (GMT 0)
mom2girls,

That's great news: 11 days and you're seeing improvement.

So glad to hear it!

mamabee,

Glad your appt went well. No, don't worry about the dosage - 4.5mg is what you should be on. That's what I started out with too (just with the wrong filler) before going to transdermal.

I'm so glad he suggested L-Glutamine - it's so important for colonic repair. Is he giving you pills or powdered L-Glutamine? I would recommend powder - at least 15 grams a day. If you need a place to get it from, I've found a pretty inexpensive, high quality place, whose link I can give you. Regarding the Zinc, it's usually in the multi-vitamin. Does the doc know you're taking the multi-vitamin and how much Zinc is contained in it?

Sounds like you too are doing better. And I know once you start the LDN, your progress will continue to get better and better.

Keep us apprised of your progress. :-)

Posted 9/13/2011 1:42 AM (GMT 0)
I am taking the L-Glutamine pills for now and will probably switch to the powder when I'm finished this bottle. It's 1000mg and he has me taking 2@ 2x a day. I am definitely going to wait on the Zinc for now b/c I haven't heard much about it until he recommended it today. Yes, it's in my multi-vitamin, so that's why I'm hesitant.

Going to bed now and am taking my 1st dose of LDN :)
Posted 9/13/2011 5:26 AM (GMT 0)

mamabee said...
Going to bed now and am taking my 1st dose of LDN :)


sweet dreams ;-)
Posted 9/13/2011 11:16 AM (GMT 0)
Last night was the first night in three nights that I didn't have to wake up and use the bathroom! Didn't even take Lomotil! Don't know what it was from, but I'll take it :)

I have gone 3 times so far this morning, but they're formed (still traces of blood). Because I only use the bathroom in the mornings (with recent exceptions at night) now and I eat all throughout the day, I feel like between the enema and suppository, my nights sometimes and mornings will be this way until I reach true remission.

I slept well...sometimes felt like I was sleeping, but was aware of being asleep...does that makes sense? lol

Thanks badslinke:)
Posted 9/13/2011 11:57 AM (GMT 0)
mamabee,

Sounds like you are on the right path...LDN is already starting its work!

Yes, the being aware of being asleep - Iunderstand that.

Did you have any vivid dreams?

Posted 9/13/2011 1:07 PM (GMT 0)
Hello all.

I gave LDN a spin from May 25th, 2011 to September 9th, 2011. Unfortunately, it didn't work as well as I had hoped. I wanted to keep going with it until the end of September, but the Dr. who prescribed it for me refused to refill it for me unless I went and saw him in NY, while I'm in school in Ohio. It really upset me. I'm going to be starting Humira this week. I was really, really hoping that LDN would do the trick for me. I also heard if you're in a severe flare it doesn't work as well to get you under control. I don't know how true that is, but maybe there is something behind that.
Posted 9/13/2011 5:08 PM (GMT 0)
Hey mamabee! I am taking the same dose and filler as you. Today has been rough. I feel like I'm coming down with something. I'm guessing it's either from the LDN or 6MP. I'm exhausted, weak....used the bathroom 8 times this morning with a lot of blood (and also some formed stool :)). Having pain too. Ugh!!!!! Well, I guess I can just be glad I had 5 good days. I just really want to get rid of the blood!  I'm hanging in there! You do the same!!!!
Posted 9/13/2011 5:12 PM (GMT 0)
I forgot to mention I went down to 5 mg of Prednisone yesterday. Maybe that has something to do with it!
Posted 9/14/2011 1:48 AM (GMT 0)
Just checking in. Feeling absolutely great. Down to only going 1-2 times daily fully formed. I still can't believe it. Been three long years of flaring and very sick. Hope everyone else is doing well also.
Posted 9/14/2011 3:32 AM (GMT 0)
Happy to hear so many are doing well. I hope you have continued success Boxermom. I have known you for a long time and I have seen you struggle, you deserve a break from this!
Posted 9/14/2011 4:29 AM (GMT 0)
I haven't posted in a while either. Adjusted my dosage of ldn to 3mg (at 4.5 my liver and/or metabolism was too sluggish to clear it, so I was blocking the endorphin production too long). It has definitely kept the worst at bay, though my diet is totally key, stress can throw me into a mad flare, and my fistula is still open. I am considering doing humira for a time to see if it will close the fistula. I talked to Dr. Jill Smith at Penn state, and she confirmed that I can continue to take the ldn with humira if I decide to go that route, and even recommended it. I have had so many unexpected 'positives' from the ldn (no more eczema on my arms, haven't had a cold or flu, allergies, and I mean severe cat allergies, gone) that regardless of how effective it is for the colitis/crohns I will continue to take it. I suspect I would be much worse without it. I was in a horrible flare when I started, and I haven't been that bad since. I still take colazal, but I have at times over the last few months eased off of it to give my liver a rest.

Mine was prescribed by gi in Los Angeles, I get it from skips pharmacy in boca raton fl with avicel filler. My diet right now sucks:) This is a big part of wellness for me, I've just been really lax lately and need to get back on the horse. For me sugar is a major trigger. Have been on the ldn since I think feb or march, was extremely fatigued for the first month (didn't feel bad, actually was getting incrementally better, but really tired) and than my energy bounced back. Other than that, no side effects, just some very cool vivid dreams (also subsided) I sleep very well.

I would recommend it to anyone, it's the lowest risk and possible high reward treatment...best, amy
Posted 9/14/2011 8:59 PM (GMT 0)
Astar, good to know you were extremely exhausted the first month, because I am SO EXHAUSTED too! Plus, I am tapering Prednisone which has it's own withdrawal symptoms which includes fatigue. No wonder I'm just not worth anything these days. My poor girls probably just want their healthy mommy back and so do I!

On a good note, you know how the LDN gives you very vivid dreams, well I had a dream last night that I was dating Tatum Channing (one of my favorite actors). My husband really didn't think it was quite as interesting as I did! Ha!!!!!
Posted 9/16/2011 12:00 AM (GMT 0)
Astar:

 I too was EXTREMELY EXHAUSTED being on LDN for the first month, however at 6 - 7 weeks my stools were firmed and only 1 to 2 bm a day, no bleeding, minimal urgency.  It's like wow.  I do eat very well, mostly rice, vegies..greens..chicken, lamb (for a treat, it's very expensive), no pork.  Psyllium SEED powder helps me a lot.  Also I take VSL #3 2 pills a day.  Over 2 pills it tends to bother me. 

Now at 8 weeks, I have introduced soft whole wheat breads with peanut butter and no problem, actually I think it helps bulk my stool.  I will eat yogurt with a small amount of blueberries, and granola...with no problems.  I will drink a little decaf green tea with honey. I consider myself in remission, but I need to watch the stress!  Stress makes my colon go in high-speed and whamoo .. Yahoo!! 

So hang in there. 

 

Posted 9/16/2011 12:06 AM (GMT 0)
Hopeful4uc,

So glad to hear you are doing so well on LDN.

Yes, you have to watch the foods... but it's better than suffering with all the symptoms, no?

Posted 9/16/2011 2:54 PM (GMT 0)
Just wanted to update since I started LDN Monday...

Ever since that night, I've only had to use Lomotil 1 time (that was yesterday). I have been able to sleep all night without waking to use the bathroom...even after doing the enema and suppository! Yesterday, I had a bad morning and some blood and mucus...thinking it's something I ate.

Still doing SCD, but not as strict...allowing some carbs, but not overloading like I used to. This week was really when I started allowing more carbs b/c my daughter started preschool and it's SO hard and time consuming to make sure she eats a great meal 3x's a day, and her sister, but it's extra work for me! So for breakfast, I'll do toast with natural peanut butter. Lunch, I'll either do a protein and veggie or just make myself a sandwich if we're rushing around. I haven't noticed a difference in my BM's...only difference has been since I added another 1tsp of Psyllium Seed Powder to my day and I'm taking the VSL#3DS 3x's a day. I find that by the end of the day, I'm really bloated and feel like I need to go to the bathroom, but can't. Guessing I need to drink MORE water, but I feel like I am. Funny thing is that I'm actually waking up at night to pee twice and A LOT!

Anyway, the great thing is that today I've only gone 1x to the bathroom and there was MINIMAL blood and was formed! Going to try to drink tons of water today and see how I feel by the end of the evening. Also going to cut back on the carbs...this Prednisone appetite is ridiculous!

Think that's it for now...glad to hear everyone else is doing well. Mom2girls, I hope your exhaustion subsides with each new day!
Posted 9/16/2011 3:23 PM (GMT 0)
Mamabee, so glad to hear your doing so well!!!! Great news!

I've been struggling this week! Almost thinking about trying to incorporate the antibiotic combo but not sure. I'm not doing the SCD, but I am trying to eat no gluten, no dairy, no caffeine and minimal sugar. I have tons of blood! It's starting to freak me out! I'm trying so hard to hang in there!
Posted 9/16/2011 8:26 PM (GMT 0)
mamabee,

Glad to hear you're doing better.

That's the thing about LDN, it seems to work much more effectively and quickly with the SCD diet, as you're proving.

Are you having any really vivid dreams?


 

Posted 9/16/2011 8:27 PM (GMT 0)
mom2girls,

I'm sorry you're still seeing lots of blood.

I know you are not doing SCD, but perhaps you should try it - I think it may help alot with your symptoms and the bleeding.

What do you think?

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