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

I'm glad you're back. It has starting working already. This is the first time in 2 years that I haven't had to go to the bathroom at 3 am in the morning. And I have tons of energy; never had that before. Here's the deal I'm drinking Ensure, which in the past would make me have tons of diarrhea. I've been drinking for the past two days and have minimal problems. Also, the urgency has disappeared. I mean my God, overnight the urgency has disappeared.

Well, perhaps I'm better able to absorb the liquid LDN than the transdermal or perhaps the transdermal and its' effects are kicking in after 3 weeks. Now the next test is to see if the frequency goes down. At my very worst, I was going 20x/day, 5 times in the morning and every 1 1/2 hour thereafter, and a couple times at night. I'm at 138 lbs now. I had an accident yesterday and a really bad accident about 2 weeks ago.

So far I've gone twice this morning. Twice before going to the gym. I went to the gym at 4:30 am because I couldn't sleep. I still have tons of energy at the moment at 6:30 am.

I've dropped the Asacol, and am only taking LDN and slippery elm. No VSL either. Only time will tell if this will get better.

As a side note, my Grandfather was diagnosed with colitis a year ago and he's flaring right now. I'll have to get him on this medication as well.

I do hope I get to remission, gain muscle and weight, and live the life I truly should be living!!!!

blueclassring said...


I do hope I get to remission, gain muscle and weight, and live the life I truly should be living!!!!

I will need to make a note to ask my doctor about LDN next time I see him.

I've lost alot of muscle since I've started having real problems with UC, and have found it quite difficult to get it back.
I'll have to become even more of a gym rat!

stayfocused,

Welcome to the forum.

I can tell you that I had to be my own advocate, because my Gastro told me diet has nothing to do with UC, except for spicy foods or alcohol. He loaded me up with different mesalamines (none of which worked and I turned out to be intolerant of them), prednisone, and then when nothing worked he gave me a choice of the biologics or surgery - neither of which I wanted.

Just thought I'd chime in on this thread and let you all know that I will be starting my son on LDN therapy very soon. I just found a GI who will prescribe the LDN for us. My son's prior GI doctor would not even hear of it, but he was very quick to write a script for Imuran, which my son will not be taking. I am in hopes that the LDN will bring some relief. My son has been in a pretty bad flare since Feb. 2012. The new GI suggested that we first get on the Prednisone to try and get this flare under control. I am ok with that as long as he's willing to give the LDN a chance as well. I think the ideal scenario here is to get the flare under control with prednisone and taper off soon, then use the LDN to hopefully keep him in remission.

I have had to be my son's advocate and basically guide these doctors and tell them what we want to do, otherwise he would be on so many drugs.

sheilasuperstar, you are absolutely right about the steroid use! I hate the fact that he has to be on them. Asacol just stopped working all together for him. He has been on prednisone for 2 weeks now and not noticed any difference. In fact, he just got out of the hospital yesterday due to a possible bacterial infection. He was having severe abdominal pain for 2 days so I made him go to the ER. WBC was elevated even on the prednisone. Stools and gas smell putrid so evidence was leaning toward bacteria. They gave him Flagyl and Cipro through IV and got the pain under control. I feel the prednisone has a lot to do with the infection he acquired. It just doesn't seem to end. We did get the LDN yesterday but I don't feel we will get the desired results as long as he is on the prednisone. The hospital also started him on 50 mg. Imuran!!, and I was so against using Imuran. We are going to try and make some diet modifications to help get flare under control. It just seems like its one vicious cycle after another.

herbgarden,

Check for Cdiff....the barnyard smell is a good indicator. Cdiff is a bacterial infection that will wreak havoc on your gut flora and produce UC flare symptoms.

tcf5010, 

That's great news.

So how long were you on the lower dosage, before moving to the 4.5mg dosage?

I assume you're on the oral LDN? And if so, which filler?

 

Regarding sugar intake, do you mean sugar from fruits, or from processed products?

Yup, sounds like we have the same stuff. I just ordered a refill from Skips. Sucks that I have to have it shipped to my sis in Richmond then she ships it to me. Apparently they aren't allowed to ship the stuff to NC.

Hi all, I would like to add my experiences:   I was diagnosed in 2003 with pan ulcerative colitis. I used the standard meds- pentasa, azathoprine and prednisalone. I had periods of flair ups and periods of remission.   Around 2 years ago I started to flair. The tapered dosing of pred was rolled out but as usual, once the does was at 15mg per day the symptoms returned. More pred and aza followed. I was then informed my white blood cells had dropped to dangerous levels and I had to stop the aza (I believe I was left at the max 200mg per day dose for too long without close monitoring but that’s another story).   Not long after that, my appendix ruptured which lead to an emergency operation to remove the appendix- I pleaded with the docs not to remove the bowel, which was their plan. I got through the op with my bowel intact.   I acquired Cdiff whilst in hospital. Cue months of fighting for cdiff treatment rather than uc treatment or surgery. I was finally clear of the cdiff bacteria and things settled for a few weeks only for the same type of cdiff/uc symptoms to return. Another colonoscopy and a uc flair diagnosis prompted another dose of steroids followed with the same symptoms returning once the steroids tapered down.   I then asked to be referred to a surgeon- I'd had enough and was sick of wasting my life being ill. I was going to the toilet 10 times a day at this point with an alarming amount of blood present. It was nearly a 10 week wait for the appointment with the surgeon, I set about researching the different surgical options.   That’s when I first read about LDN.   I thought it had to be worth a go. My GP and Gastro dr wanted nothing to do with it, they dismissed it. I obtained a private prescript ion and started taking it in liquid form. 1mg for a week up to 4mg in the forth week and 4.5mg from then on. That was 2.5 months ago.   Within 2 weeks of starting LDN I started to see improvements. Within 4 weeks I was down to two toilet visits a day. I took a small wobble in progress and found that splitting the dose (half of the 4.5 in the morning and half before bed) worked for me. I am down to once or twice a day which is totally normal apart from a couple of tiny specks of blood every once in a while.   I know I still have to take it easy, try to avoid stress, cut out alcohol (I do allow myself a couple of beers now and again) and I have to eat sensibly but at this point in time I feel the best I have in over two years.   Time will tell if LDN turns out to be the wonder drug I was hoping to find but things are looking good. I recommend trying it if your options are running low.   Good luck and best wishes to all suffering with this terrible illness. Mr C, aged 30.

Hey boxermom, I am so happy you're still feeling so well! I hope you're able to stay stable while on the antibiotics. Get some rest, I hope you heal quickly.

Thanks. The tubal was on May 25th. Incision is infected and not healing.. Other than that doing well. Actually at the beach right now trying to enjoy things. Hope u are all well also?!