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

Hopeful what version of LDN are you using? Oral or transdermal?

Hopeful4uc,

Yes, I do think you should switch to Transdermal LDN; you might be having the same type of absorption issues I had with oral being ineffective. Call Skip's and tell them you are not having much progress and you think you might be having absorption issues and would like to try Transdermal LDN and see what they say. Maybe it will just be a matter of their calling your doctor to get the script changed to transdermal, I'm not sure.

Glad the enema helped.

ANd I think the other things you are doing are good as well.

Let us know what happens with Skip's.

Hopeful4uc,

Glad you got the transdermal LDN.

When do you expect to receive it?

I'll keep my fingers crossed for you :)

Good luck, and let us know what happens.

InSoFla, I was wondering if you could give a clear recap of your initial experiences with LDN. If I understand correctly, you started with the oral and avicel filler, had bad reactions for two weeks, and then switched to a hypoallergenic version (filler unknown?). The hypoallergenic version still gave you problems for another two - three weeks, so you then switched to transdermal. Within a week of starting transdermal, your bleeding had stopped.

Is that correct?

Gotcha. When you switched to sucrose, did the headaches, D, muscle aches, stomach pains etc. go away or did they persist until you finally switched to transdermal?

What filler are you using Probiotic?

badslinke-

I'm getting the transdermal LDN this week, (currently on oral LDN)...however today i started using psyillium seed powder and my stomach feels actually pretty good.  I have noticed that my tongue is pink, I have no pain in my colon, no urgency, no bleeding...hmmm.   I actually haven't had a bm today so I'm wondering what tomorrow will bring.  I think the inbalance of butyrate acid could be a key for me???? hmmm.  Long term use of antibiotics is what kicked-in the UC for me, so maybe the imbalance of gut flora, and butyrate acid or something.

 

When symptoms did you have using psyillium seed powder?  My stomach felt full, after taking it...I mix it with apple sauce, not too bad that way.  Starting out I'm taking 1 tsp in the am and 1 tsp in the evening.

hmmm?

 

Probiotic,

I am so glad to hear from you - and that you're in 90% remission! That's great news. You were one of the ones I was so worried about having to get  surgery.

 but I continue to have to eat a very restrictive diet

Yes, I know about that. I too am on a very restrictive diet.

But lately I've been adding massive doses of slippery elm bark powder (1 tablespoon mixed in a little water x 3 times daily), and have been able to have foods I could never have before. I used to take 1 teaspoon once daily, but I believe it's like badslinke noted about probiotics, you have to take mega doses of it to be effective, so now I'm taking 3 tablespoons 3 times daily. In my view, slippery elm is nature's mesalamine. Anyway, I'm going to keep doing this so that I can start to eat more normally without suffering the price.

Perhaps it's something you may want to try too?

The place I get my organic slippery elm bark powder is: http://www.pacificbotanicals.com/store/product.php?productid=327&cat=0&page=1

It's certainly cheap enough, $42. for 2 pounds, which should last approx. 2 months.

What do you think?

Interesting. I ask InSoFla cuz I have some news for you

I'm actually back on LDN. Except now I'm taking the oral version, with avicel in it. I was doing ok with the probiotics/psyllium combo, but not ok enough. I decided last week to give LDN another go, and am trying the oral version now.

I'm curious about your symptoms with avicel because two interesting things have happened since I started the oral. First, my number of BMs has decreased significantly. It's 9pm now where I am, and I've only had 4 movements (beyond the normal AM movements) since starting work at 9am. Before, I was having 7-8 movements by this time, about once every hour to hour and a half.

However, at the same time, starting just this weekend, I've lost almost all form to my BMs. THe great majority of them are now very liquid, and gassy. It is just bizarre.

The only problem is that there are too many variables that might explain the sudden loss of form as well as the very noticeable decrease in movements per day. I had two full whiskeys on the rocks on Friday night, and the next day, I was seeing liquid, and it hasn't really stopped since. Furthermore, I've dropped a lot of the psyllium seed because I wanted to see what LDN did solo. It could very well be that the lack of psyllium is causing much of the form loss. Finally, I'm running out of my supply of VSL 3 DS, and am only taking one packet a day instead of 4, because I don't have the money to pay out of pocket again, and insurance from work hasn't kicked in yet. That's three very possible candidates for explaining my loss of form.

My pharmacist here thinks that avicel, microcrystalline cellulose, is doubtful as the cause of the symptoms. She claims it's in everything as a filler, even regular foods, and is basically just ultra finely ground plant fiber. Honestly, finely ground plant fiber does not sound like something that should be causing such severe reactions. Hell, that's what psyllium seed powder practically is!

It got me thinking real hard, and if you look at the list of people who posted their experiences with LDN at the beginning of this thread, the only ones who said they had positive results from transdermal were you and Boxermom. Everyone else who tried transdermal didn't see any worthwhile positive effects, and that included me.

It's nearly impossible to prove, but your reactions may not have had anything to do with the filler. It might very well have been a classic Herx reaction, where you literally just got worse before you got better. If LDN is truly an immune regulator, then it makes sense that you would get worse as your immune system kicks up and fights off whatever is hurting your stomach.

At least, that's what I'm hoping is happening to me. Transdermal LDN never cut my movements down to this level, and the numbers are decreasing daily. But at the same time, my form has nearly disappeared, yet the filler really seems like the least likely candidate.

Anyway, the current plan is to stick with the avicel filler for the next week, and see what happens. If I don't see some return to form, then the pharmacist is going to have to switch fillers for me, or I'm going back to Skip's. I might add the psyllium seed back into the routine, but probably not just to see if things improve on their own (for the sake of science).

Ya...

Hi guys. I, too, am having great success with LDN + meds + diet. Been going to the bathroom once every other day these days.

I have a question for Insofla.

In the LDN thread of Crohn's forum, you said, " I started using LDN - 4.5mg - hypo-allergenic formulation - a few weeks ago, with very promising results. Since December I had been undergoing a severe UC Flare with lots of bleeding - bleeding was at a 10 (scale 1-10, 10 being worst).
I am now at a 2 with the bleeding."

This is the post from February of this year.

This LDN that you are referring to is in the oral form and seems like you were having success with it.

But didn't you say earlier in the UC forum that oral LDN didn't work for you at all without any results?

Probiotic,

I understand your frustration with the restricted  diet, it kinda of sucks.

Hopefully you'll get some answers from the ELISA testing and NAET as well.

I've been experimenting with adding different foods with large doses of slippery elm - and am having some success. So far, I've been able to add 3 scoops of ice cream, pistachios, and very rich chocolate mouse cake - all without the accompanying pain, D,urgency, and blood which I used to have when I indulged with those foods.

I am currently trying out bananas, will let you know how that works. Next I'll try some veggies, regular carbs.

Maybe it's something you may want to consider, it's cheap enough, and if it works that would be great.

What do you think?

Let us know your results of allergy testing.

badslinke -

So glad you are starting up LDN again.  I'm currently on oral LDN with hypoallergenic filler, I will be getting transdermal shortly and will switch shortly, I want to see if I get better absorbtion.  In addition, I started mesalamine enamas 1x nightly on day 7 (helped alot), and I also added psyllium seed powder and I can say the psyllium seed powder has also been very, very helpful (thanks to your posts).   Right away, day 1, I had no urgency, no bathroom trips at all.  I felt my tummy was full, a good feeling, not the bad feeling.  I'm only taking about 1 tsp in the am and 1 tsp in the pm, to see how I react.  I'm doing better and will continue with this dose for at least one week dependent on if my stools firm up.   After only 3 days on the psyllium and 7 days using nightly enamas I have no bleeding any more with one month being on LDN.  My stools are slowly starting to firm up, I think my colon is trying to heal.   Diet is key as well, the usual no-gluten, etc.   I take only 2 to 3 VSL3 daily, any more makes me go and my tummy starts to hurt.  I may adjust this as my colon heals. 

I think LDN needs help to give it time to work it's magic....

InSoFla-

With the transdermal LDN can I reduce the dose to about 3.5 instead of 4.5?  My script is for 4.5, and I would like to ease into it.  I did this with the oral and it helped me with adjusting to the extreme tiredness in the am.  I'm not as tired anymore though, but maybe the transdermal will have better absorbtion and need to ease into it.

Anyway, I'm doing much better than about a week ago, I think the stomach flu was going around at work and that is not a good thing for us UCer's....ugh!

I'm passing all this info on to other UCer's at work who are so severe they are considering surgery.... and they are much younger than myself, so I want to help them out.

Also thanks for all the wonderful posts of support and information.