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

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!

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Diagnosed with UC October 2007 in 1st trimester of 1st pregnancy
Last colonoscopy: revealed UC moved further up to left side
Current Meds: Asacol HD 800mg 3@ 2x daily; Prednisone 40mg; Ativan nightly; Rowasa enemas & Canasa suppositories nightly; VSL#3; Slippery Elm Bark
Started SCD 8/14
Multivitamin
Vit. C

Flare since March

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!

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Dx in 2004 with Proctitis
32 year old wife and stay at home mom to 2 girls
2 1/2 years of remission and started flaring May 2011 (5 mth. after birth to 2nd daughter)
Prednisone (tapering now), Colazal (9/day), started 6MP (8/5/11), Rowasa
Prozac, Xanax when needed
Fish Oil, L-Glucosamine, VSL #3 DS 2x, Prenatal vit, Pysllium Seed with applesauce, Tumeric
Started oral LDN on 8/30/11

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.

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Dx with UC in Sept. 2010.Tried various Mesalamine enemas/suppos/pills with Prednisone for several rounds without any help.Diet consists of mostly only protein: protein shakes w/almond milk, Liquid Minerals& Vitamins,Maca powder,L-Glutamine 15g, D-Ribose 5g, chia seeds,5-Loxin.VSL#3,K2,VIt. D3 100,000 IU every 10 days.Canasa suppos. as maintenance. But Transdermal LDN is working!!

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

sweet dreams ;-)

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?

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Dx with UC in Sept. 2010.Tried various Mesalamine enemas/suppos/pills with Prednisone for several rounds without any help.Diet consists of mostly only protein: protein shakes w/almond milk, Liquid Minerals& Vitamins,Maca powder,L-Glutamine 15g, D-Ribose 5g, chia seeds,5-Loxin.VSL#3,K2,VIt. D3 100,000 IU every 10 days.Canasa suppos. as maintenance. But Transdermal LDN is working!!

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!!!!

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Dx in 2004 with Proctitis
32 year old wife and stay at home mom to 2 girls
2 1/2 years of remission and started flaring May 2011 (5 mth. after birth to 2nd daughter)
Prednisone (tapering now), Colazal (9/day), started 6MP (8/5/11), Rowasa
Prozac, Xanax when needed
Fish Oil, L-Glucosamine, VSL #3 DS 2x, Prenatal vit, Pysllium Seed with applesauce, Tumeric
Started oral LDN on 8/30/11

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.

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Sally (40yrs old)
UC since 2002
Humira and Remicade (discontinued), Asacol, Immodium, Rowasa, Canasa,Transdermal LDN, Calcium, Vit D, Folgard, VSL#3, Metamucil capsules, Culturelle, Welchol.

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

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diagnosed 8/08 with left sided UC
female, 38 years old
colazal currently 3 3x daily
ldn 4.5 mg started 2/8/11
prenatal vitamin/iron supplement
vitamin d supplement
pre/probiotics
fish oil

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. 

 

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________________________________________
Dx Proctitis 2004, then left-sided ulcerative colitis 2005
2009 pancolitis.
Been on most meds, 6mp allergic, asacol gives me D, bad reaction to Remicade/and Humira.
started VSL#3 probiotic - 4/08/2011...makes a world of difference.
Diet Modified SCD- rice ok for me.
Started LDN 7/14/2011 - improving

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!

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Diagnosed with UC October 2007 in 1st trimester of 1st pregnancy
Left-sided UC as of 2009
Current Meds: Asacol HD 800mg 3@ 2x daily; Prednisone 40mg; Ativan nightly; Lomotil as needed; Rowasa enemas & Canasa suppositories nightly; VSL#3; Slippery Elm Bark; Multivitamin; Vit. C; Boswellia; Krill Oil; Psyllium Seed Powder; L-Glutamine; Zinc
Started SCD 8/14
Started LDN 9/12 (oral)

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?

 

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Dx with UC in Sept. 2010.Tried various Mesalamine enemas/suppos/pills with Prednisone for several rounds without any help.Diet consists of mostly only protein: protein shakes w/almond milk, Liquid Minerals& Vitamins,Maca powder,L-Glutamine 15g, D-Ribose 5g, chia seeds,5-Loxin.VSL#3,K2,VIt. D3 100,000 IU every 10 days.Canasa suppos. as maintenance. But Transdermal LDN is working!!