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

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Ulcerative Colitis
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Posted 3/29/2012 3:05 PM (GMT 0)
Started it on 3/23 4.5mg. Since then I have not gone to the bathroom more than once a day, although as you can see in my sig I am on a ton of other medicines right now. Tapering prednisone. Right now im feeling great and would recommend trying LDN to anyone, if it is what is helping me I am not sure but it is certainly not hurting!
Posted 3/29/2012 5:34 PM (GMT 0)
Been on LDN for 5 weeks now. Been on 1/2ml for the last week. Overall havn't seen any improvements with symptoms.
Posted 3/29/2012 7:39 PM (GMT 0)

imagardener2 said...
Since you are considering FT have you tried mesalamine enemas yet?
I know they are expensive but since a 30 day supply lasts me about 4 months it is reasonable for the results.

What squashes my symptoms are an enema at night, 1 sachet VSL#3 at night and dropping known flare foods/drinks like caffeine and chocolate.

Imagardener, when I get my mesalamine enemas it says on the box that after you open the package your suppose to use them within 14 days. Is that not the case for yours?
Posted 3/29/2012 10:00 PM (GMT 0)
tcf

haha I've never read that part and had absolutely no problems (that I know of). I do keep them in my closet where it's dark if that makes a difference and never seen any difference in the smell or color of the liquid. Thanks for the alert but I probably will continue as usual.
Posted 3/30/2012 1:56 AM (GMT 0)
Brian, you mention you are going once per day. HOw often were you going prior to LDN?
Posted 3/30/2012 2:00 AM (GMT 0)

blueclassring said...
Brian, you mention you are going once per day. HOw often were you going prior to LDN?


Went twice today. However I was going 2-3 times for the week prior to starting LDN. During this past flare at its worse I went 5-6x a day. We caught it very early. yeah


The vivid dreams are starting to fade after a week.
Posted 3/30/2012 2:26 AM (GMT 0)
Brian,

I forgot to ask.  Are you on any special diet? 

Posted 3/30/2012 2:52 AM (GMT 0)

blueclassring said...
Brian,
I forgot to ask. Are you on any special diet?

No - I avoid all nuts and gassy foods really.
Posted 3/31/2012 12:43 AM (GMT 0)
I've been using LDN transdermal cream for about 2 months, gradually increasing the dosage.
UC symptoms have improved but I think it's because of a combination of factors.
The slippery elm cocktail before bedtime definitely helped with urgency and I use the slip. elm enema mixture some mornings before I leave the house. (It's annoying to have to stop at a MacDonald's on the way to the dentist.)
Better probiotics and diet restrictions have also helped... especially avoiding lactose, reducing the carb intake and avoiding gassy foods.
I'll be having a colonoscopy next month so it will be interesting to hear what my GI has to say.
Posted 4/1/2012 12:10 PM (GMT 0)
ItsAlwaysSomething,

It will be very interesting to see what your next colonoscopy reveals.
Good luck.
Posted 4/1/2012 2:54 PM (GMT 0)
Regarding LDN side effects:
Since increasing the dosage, I've noticed that I seem to be more aware of dreaming than ever before. (Feel like my mind is working all night.)
Not necessarily bad dreams but sometimes I wake up feeling tired and need a caffeine jolt to shake it.

Today I tried listening to my MP3 player (self-hypnosis healing message by Christian Tatonetti) before I got up.
It helped me to start the day feeling rested.
Posted 4/2/2012 1:06 PM (GMT 0)
Hi, I have never joined a forum / chat room before. The reason I am now is because of one thing... LDN! It got my UC into remission after two and a half years of constant symptoms (3 iron infusions in that period). The first time I tried LDN I was still on all my other meds and I don't think it could do it's "thing". Now in hindsight i also think i had a yeast imbalance that i have since learnt can hamper LDN. I refused to try remicade (?) and had exhausted ALL the other options (including many with Professor Borody - Google him as he is amazing but bowel flora transfusion wasn't an option for me as I had no donor). I decided to go off ALL my meds and just take LDN - I had nothing to lose as nothing was getting me into remission and I was sick of steroids!!! Within 3 weeks I saw improvement - couldn't believe it! 3 months later and almost completely symptom free not too mention feeling much sharper of mind. One year today and I feel it is safe to say that I am in full remission! Ie normal BM every day with NO blood at all! I even fully and quickly recovered from food poisoning in that time with no sign of lapsing.

I just had to share... Give LDN a go, I heard of it from a friend whose son has MS. Took me ages to consider it seriously. I feel so liberated from not popping pills and doing enemas! Please don't think that I am saying you should stop your medicine, just sharing what worked for me. BTW there was no way my conventional Gastro Dr would prescribe LDN as it is not "clinically proven". So go outside the square to find someone to prescribe it as I know it got me into remission.
Posted 4/2/2012 4:24 PM (GMT 0)
Great to hear, LDNsmyfriend!
Posted 4/2/2012 5:56 PM (GMT 0)
LDNsmyfriend,

Are you on any special diet at all?  I love hearing success stories like this!! 
Posted 4/2/2012 8:20 PM (GMT 0)
LDNsmyfriend-
Welcome to the forum.
It's very encouraging to hear about your success with it.

I'm using the transdermal cream 4.5mg/ml.
What form, dosage did you use?

Again, congrats on your success!
Posted 4/2/2012 11:27 PM (GMT 0)
LDNsmyfriend,

Welcome to the forum.
It's great hearing success stories like yours.
It shows how powerful LDN is at helping folks like us, suffering from UC and Crohns.
Posted 4/3/2012 1:09 AM (GMT 0)
cool! my ND wants me to try LDN !!!
Posted 4/3/2012 12:53 PM (GMT 0)
Itsalwayssomething - I started out on a lesser dosage cream the first time I tried LDN (when it appeared it wasn't working) and transitioned onto the 4.5mg tablets. I did this for three months and then gave it away as I assumed it wasn't going to work for me either (ie along with all the other things I had tried/was trying). At that time my tongue was thick with a white coating so that is part of my suspicion for the yeast imbalance and theory for why the LDN made no impression. 2nd time around I just started straight back on the 4.5mg tablets.

blueclassring - no special diet HURRAY!!!! I have even managed mild curries again but I do not tempt fate too much. Interestingly if I have more than say 4 drinks (which is a big night for me and therefore very rare!) my gut just doesn't cope and I get nauseas and an acute diarrhoea attack that passes as quickly as it came. Not very pleasant so tend to avoid this scenario altogether :)

I did try many different diets though (at one stage gluten, dairy, sugar free - OMG), plus my new best friend back in the dark days was the health food shop owner (haha).... It's funny, as it has been a year where I have taken no meds and already all their names, dosages etc are almost blanked from my memory. I took two bags of meds to the pharmacy to dispose of about a month ago! The money I had spent!

I still get to see the health food shop owner - just for organic honey these days ;)
Posted 4/9/2012 5:20 PM (GMT 0)
Update:
I am taking LDN in tablets, 4.5mg. I have been at the full 4.5 dosage for just over two weeks. I have seen some definite improvement since I started the LDN but whether that is from the LDN or the other additions I made as per the LDN doc - vitamins C, D & E, DHEA - or all of it together is impossible to say this soon. I am now pretty darned close to full remission. My only symptom is that I see some blood in my stool occasionally. And that seems to be cleared up the past few days too. If I continue symptom free for the next couple of weeks/month I will be comfortable that I am indeed in remission. And then the LDN test will be that I stay there.
As far as my meds go, I am not planning on dropping the Lialda until I've been in remission for 6 months and at that point I will cut it from 4 to 2 for a period before dropping it altogether - that is the goal!
So, everything is going in the right direction and only time will tell if the LDN is really working for me.

Question: I am going to see a new GI tonight as I fired my previous one (LOL) during my December flare - he couldn't get a simple Rowasa scrip right, kept calling in Canasa (which I already had) - it took a month to get it right. Anyway, my question is should I tell new GI that I am on LDN? I suppose I should.
Posted 4/9/2012 6:20 PM (GMT 0)
Gonk,

That's great news.

I'm sure the other supplements are helping, but I don't believe enough to give you remission - that would be due to LDN working.

I think you should tell your new GI about the LDN.

Curious as to what his reaction will be. Do let us know.

:-)  

Posted 4/10/2012 3:19 AM (GMT 0)
I saw the new GI this evening. I liked him a lot but he was not on board with the LDN and urged me to stop taking it. He felt that way because there are no long term studies on it and particularly because there are no studies for ldn as a treatment for UC. He did not think that the U Penn study was relevant as it was for CD, not UC, and also because it was so small a study. He did not feel there was any reasoninshould be experimenting with my body (as he put it). I do understand his stance and I respect his opinion, but I am going to continue with it.
The one thing he said that I did not like was that he said that if I was only having one or two flares per year and they are limited to my rectum then I am doing great. Consideriing my flares last 3 months usually,I am not ok being in a flare 25-50% of my life even if my case is considered mild! Not ok!!
Posted 4/10/2012 3:26 AM (GMT 0)
I can understand his hesitation, but ultimately the decision is yours to make. And no flaring at any point in time is not alright.
Posted 4/10/2012 1:02 PM (GMT 0)
Oh wow Gonk, your new GI sounds like my old one word for word re LDN! I'm sorry to say that if that was my new GI i wouldn't be going back purely because of his "your doing great" comment! I feel quite indignant on your behalf haha!

Does the new GI think long term remission is achievable for you? It doesn't sound like it. Yet isn't that what every UC sufferer wants and therefore what all GIs should be aiming for with their patients?

It is important to like your GI but equally important that you feel they are working towards the same goals/expectations as you in terms of your symptons.

Be confident with your decision to stay with LDN. Personally i would rather risk long term exposure to such a low dose drug than a lifetime on mesalamine or Asacol etc, not to mention on-again off-again steroids!!
Posted 4/11/2012 1:58 PM (GMT 0)
The GI feels that because my inflammation has been limited to my rectum for the past 6 years (it used to go "all the way up") that the mesalamines are working, that the proctitis remains because the orals do not get all the way through the colon, hence the rectals. And he feels the mesalamines are nothing to worry about long term.
He also mentioned something in our discussion about remission I had never heard before - UC Burnout. Anyone ever hear of that? He said that some people experience this phenomenon where their UC gets better and better as they get older and eventually achieve permanent remission. He didn't suggest that was going to happen to me necessarily just that it happens to some uc minority. UC Burnout?
Posted 4/11/2012 5:10 PM (GMT 0)
sweet. I'd take being called a burnout any day, but not back in high school! LOL. I would love for this to happen to me. I think I'm getting better every year, very slowly.

I started with 5-LOX from life extension it's boswella and there was a study that boswella put UC patients into remission, so I'm trying that along with LDN and my asacol.

I need to do rectal meds more!

 Goodluck Gonk!

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