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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 4/12/2012 1:49 PM (GMT 0)
Gonk, like you I initially had my entire colon inflamed/affected by UC. After 6 months or so on standard meds (ie no alternative meds taken) I had a colonoscopy which showed that the UC was only in the left side of my colon. The Dr used this as evidence that the meds were working, but that the orals weren't getting all the way down the colon (sound familiar??!) The only problem was that for the next two years i suffered worse symptons than when the UC went all the way around, massive amount of blood loss and no amount of tweaking/swapping on the traditional meds seemed to have any impact. Only steroids would help but as soon as i tapered off the symptons just all came back. My GI was flummoxed somewhat, especially as I didn't want to try any of what I call hardcore drugs like remicade (infliximab) as I was hoping to try and fall pregnant as soon as i could get my UC under control. I just felt that i hadn't exhausted other approaches before going down the path of those stronger drugs with nastier side effects.

My GI scoffed (slightly but still there was a scoff) when I mentioned VSL#3 to only discover for himself the there had been a successful clinical trial done in india (i think) with UC sufferers. So after trialling that myself with little effect I mentioned Prof Borody's fecal transplant - that was like me suggesting voodoo! ...and of course when i mentioned LDN he was adamant that it was not worth talking about either!

In MY humble opinion LDN is what got me into remission combined with me stopping all other meds that i was taking at the time. As I was only diagnosed with UC in 2008 I don't think I have "suffered" long enough to be able to interpret my remission along the lines of a "burn out".
Posted 4/12/2012 2:11 PM (GMT 0)
HI LDNsmyfriend,

How much LDN were you taking, capsules or cream? How long were yout taking it before you noticed a change? You weren't on any UC meds at all just probiotics and LDN?

Thanks for writing back.

Posted 4/13/2012 12:40 AM (GMT 0)
Therearemiracles,

How are you doing?

What are you on now, LDN?

How are you feeling?

A big hug to you.

Posted 4/13/2012 11:08 AM (GMT 0)
Hi Therearemiracles,
If you scroll back through the thread you can see my original post plus a couple of others from me (about 15 posts back from yours) which will answer your questions (and more!) Just feeling a little time poor to have to type it again on the iPad (not the easiest keypad to type on!).

Just to clarify though, I am not on any probiotics now. The 2nd time I tried LDN I decided to take NOTHING but LDN as a "control" test. That is if I got better it could only be the LDN (...hmmm... or maybe the fact that I stopped all my meds??)

:)
Posted 4/13/2012 1:01 PM (GMT 0)
I wish LDN would stop my bleeding. So far it hasn't. Been on it since Jan 9. Oral first 3mg and transdermal now at 4.5mg. Still on 35 mg of Prednisone and still bleeding :( I'll read your other post. Do you mention what you were eating?
Posted 4/16/2012 11:09 PM (GMT 0)
Hi all. Just checking in. Still feeling great. Total remission. I have been on LDN for a little over a year now I think and still going. Insofla- should I just keep doing nightly or cut back?
Posted 4/17/2012 2:26 AM (GMT 0)
Box,

That's great.
IMO, I would keep taking it if I were you, no cutting back (that's what I am doing).
Posted 4/17/2012 2:42 AM (GMT 0)
Doing great on LDN. Down to 7.5mg so I should be able to slide right off the prednisone over the next few weeks!
Posted 4/17/2012 2:58 AM (GMT 0)
Great news brian..
Posted 4/17/2012 6:35 PM (GMT 0)

Hi all - just checking in.  LDN is still working wonderfully for me!  I have been on LDN since last summer July 2011.  No bleeding, no urgency unless I eat way too much popcorn.  The big help with me was I needed to stop drinking milk...it messes me up every single time.  nono So now I use soy (silk) milk on cereal.  I eat wheat cereal, with yogurt chunks (that's ok); grains and all is very good.  So happy, I have gained weight....haha...from too much eating, but it's been fun.  Also taking VSL#3 the regular dose tablets; works great.  I only take one a day with a meal...get that good probiotics in me to aid in digestion.  I have my life back!! 

Anyway, for those of you trying LDN and not getting success, try to eliminate some drink/foods that may bother you, like milk, wheat, gluten, coffee, etc. at first to let your colon heal up, then reintroduce foods.

I've had great success!!

Posted 4/17/2012 7:22 PM (GMT 0)
These are all great success stories. Right now, I'm experiencing a lot of fatigue. Do you think this is normal on LDN? I'm going to order blood tests on Vitamin D, Iron, and B-12.
Posted 4/17/2012 7:28 PM (GMT 0)
My daughter's been on LDN for about 6 weeks now. No difference. She's on a high dose for a kid - about 4mg? We've tried it in the past at a lower dose (right for weight) but it didn't work. I'm giving it the 12 weeks in the Jill Smith studies, and then off.
Posted 4/17/2012 7:30 PM (GMT 0)
Hopeful4uc,

Great news.

I would recommend your staying away from Soy Milk, and substitute instead: almond milk, it's much healthier. Soy is very bad.
Posted 4/18/2012 12:11 AM (GMT 0)
Blueclass,

Yes it is possible to get tired.

I think it's a great idea to get your vit.d3 and b12 levels checked.

The blood work for b12 is not accurate, as it measures the non-bio-available form of b12 as well, so it  does NOT give you a real number.

If you want a very accurate B12 test, you'll need to get the urine MMA test.

Posted 4/18/2012 1:34 AM (GMT 0)
Hello, I'm getting ready to start LDN 1.5 mg and eventually get to 4.5 mg. Is the only side effects trouble sleeping and vivid dreams? Any other info would be greatly appreciated.
Posted 4/18/2012 2:12 AM (GMT 0)
You shouldn't have any side effects starting at 1.5. That's how I did it, 1.5 for two weeks, 3.0 for two weeks, then to 4.5. No sides.
Posted 4/18/2012 6:16 AM (GMT 0)
I've don't eat dairy, gluten or drink coffee. Still trying to figure out the diet thing. So glad to hear some of you are doing well on LDN. Has anyone been on it for months without success and then have it work? Should I stop it if I've been on it since Jan 9 and not seen much effect? I was on 3mg since Jan and then I upped the dose to 4.5 and switched to transdermal cream as well. Is this just not going to work for me or should I have more hope?

Also I've talked to Skip a few x. Is there any way I can email Jill Smith with questions?
Posted 4/18/2012 6:34 AM (GMT 0)
Have you tried the liquid LDN? I'm going to make my own at home but I think the transdermal is kicking in. I've been on it for 15 days. It's gotten better since I dropped the gluten and each rice as my carb source.
Posted 4/18/2012 3:52 PM (GMT 0)
bubbz,

Welcome to the forum.
So glad you'll be trying LDN.
Which type, oral and if so, which filler - or transdermal LDN?

The only other minor side effect, is initially some get a cold or flu-like symptoms (i got those and they went away within 24 hours) - it's a small price to pay for the LDN to gear up your immune system.

IMO, there are other things you could also incorporate into your regimen, which will make a big difference symptoms wise.Here' my list:

Here's what's worked for me:
1) Diet is key for me: I do the Paleo diet, and I am very, very careful with food combining, because if you mis-combine it creates havoc! Here's some info on it: http://cureforulcerativecolitis.com/step-1-methodology-to-eating
2) Adding L-Glutamine powder 5 grams - for colonic repair. If you're having issues with urgency and diarrhea, then you'll need to take L-Glutamine powder 1 teaspoon mixed in a little water on an empty stomach, and that should alleviate your symptoms alot.
3) Adding slippery elm bark powder - 1 tablespoon mixed in a little water, 3-4 times a day - IMO it is the equivalent in nature to the 5asa's and works much more effectively than all the mesalamines without the side effects.
4) Probiotics are key. If you can get your doc to write you a prescription for VSL#3 DS - that would be better, stronger, and probably cheaper ( IMO 3 x per day at least) than buying VSL#3.
5) Drink lots of good water.
6) Get your vit. d and b12 blood work done, to see if you are deficient.
7) SCD diet - specific carbohydrate diet - many have had lots of success with it. If you can't do it because it's so strict, at the very least do dairy free, wheat free, gluten free. Personally, however I prefer the Paleo diet, because it is an anti-inflammatory diet - mostly veggies, salads,nuts, fish, lots of GRASS-fed animal products like lamb, beef, bison, and eggs, no grains at all. The whole basis of the diet is to concentrate on foods rich in healthy ratio of omega 3 to omega 6, which is ideally 1:1. Grain-fed animal products contain unhealthy ratio of 1:20 which causes and contributes to inflammation in the body, and therefore disease. Also grass-fed animal products contain important CLA, which you cannot get from any other source.
You can buy grass-fed animal products from a local health food store like Whole Foods, but you can also find a local farmer who only has grass-fed animal products through: www.eatwild.com
8) start a food journal and see what correlations come forth
9) There's a great app for keeping track of your symptoms, diet, meds, etc...
http://wellapps.com/products
10) Do some research on LDN - low dose naltrexone, you can search this forum as they are several threads on this. I can tell you it works!
Here's the Penn State research done by Dr. Jill Smith with LDN and Crohns Patients.
http://www.ncbi.nlm.nih.gov/pubmed/21380937
https://www.healingwell.com/community/default.aspx?f=38&m=2204683#m2222188, https://www.healingwell.com/community/default.aspx?f=38&m=2129791&p=1
11) Adding rectal meds. Are you on any rectal meds like canasa suppositories or rowesa enemas?
12) You may want to add liquid vitamins/minerals to make sure your stomach does not have to do the work of breaking them down, and hence not absorbing them.
13) Also, I've been supplementing with good quality whey protein - Dr. Mercola's Pro-Optimal Whey, which I make with almond milk ( you can see from my sig).
14) Astaxanthin is a great anti-inflammatory


What do you think?
Good luck, and I hope you start to feel better soon.
Let us know how we can help you.
Posted 4/18/2012 7:57 PM (GMT 0)
love these ongoing LDN threads. I too entered an excellent, almost 1 year remission after starting LDN. My UC is simmering a bit again lately, so LDN isnt yet my magic bullet but it seems to help more than the biologics ever did, without their toxicity and tendency for one to become allergic and reactive as I did in failing bith remicade and humira. indeed, the remission began after stopping humira and then tapering swiftly off my low dose pred. As a qualifier, I also killed off my human whipworms, after experimenting with various worm therapies on and off for a few years. I don't attribute the pred/med free remission start to killing off the worms alone, although the human whipworms were certainly a mistake and waste of time in my case- but I had once previously killed them to see if that was the reason for not getting remission, and was still unable to get off humira and pred then unlike after I began LdN- so the key new factor must have been LDN.

Has anyone here done research on optimal LDN doses by bodyweight? 4.5 mg seems to be the standard dose, and i wonder if a stronger dose would help for more severe symptoms/flares, or if too much defeats the purpose and is
counterproductive (LD standing for"low dose" after all), in which case 4.5 might be too much for those of us who are smaller than average?

Finally, it is interesting that The LDN clinical syudy was for CD but it seems that the high traffic about, and us of, LDn on healingwell seems to be here on the UC forum. (personally my UC has not been as ckearcut as would be ideal,
so one reason I want to hold surgery at bay unless I am extremely desperate,
is the possibility that it coukd actually be crohn's colitis masking as UC).

Post Edited (Probiotic) : 4/18/2012 2:17:12 PM (GMT-6)

Posted 4/18/2012 8:17 PM (GMT 0)
I have heard that if the LDN becomes ineffective you can go off of it for a week or two and then start it back up and that should kick things back into gear.
Posted 4/18/2012 9:09 PM (GMT 0)
I had a colonoscopy during 9/2011 where pre-cancerous cells were discovered. My GI recommended a total colectomy. I made it very clear that I was not happy with the lack of options and flatly refused.

Anyway, I had another colonoscopy on Monday where my GI took over 50 biopsies in which there was no evidence of dysplasia (pre-cancerous cells).
He warned me that there are no guarantees which I certainly understand but, at this point, I am so grateful that I did not opt for surgery.

My GI wants me to have colonoscopies every 6-9 months (which I will do) and is OK with continuing to prescribe LDN as long as I want it.
I guess he's a keeper after all.

I choose to be optimistic and hope that the steps I've taken (including the addition of LDN) have had something to do with this current good news.
Just wanted to share.... :-)
Posted 4/18/2012 10:17 PM (GMT 0)
Congratulations, great news!
Posted 4/19/2012 12:08 AM (GMT 0)
IAS,

Great to hear.
I do believe that all the changes you've made: diet, supplements, LDN - all contributed to good results.

Glad your doc is willing to prescribe LDN for you.
Posted 4/24/2012 7:04 AM (GMT 0)
I've started liquid LDN tonight.  I made the liquid( 1 mg/ 1 mL solution) from tablets that I obtained by alldaychemist.com.  The LDN cream has helped the bleeding but I still have the urgency and semi-formed stools.  I hope the liquid gets me into remission.  I've been on LDN for 3 weeks now.  I am have eliminated wheat at this time. 

I'm not taking my Asacol or VSL at this time. 

 

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