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

I am very happy to report that whilst on LDN I have had another year completely clear of symptoms. I have maintained all the dietary supplements listed previously apart from aloe vera pulp.

Post Edited (hardkaur) : 2/21/2013 2:57:53 PM (GMT-7)

hardkaur,

great to hear

rpgdancer,

you haven't noticed any difference? how long have you been on it?

are you taking any opiates which might be interfering with the LDN receptor site?

@insofla it's been over a year since I started the LDN. The pills sent me into a flare because they were made with a lactose filler and I'm lactose intolerant. Once we figured that out, they started me on the liquid and at first, I felt a difference, then less, and now, i don't notice it being any better. i don't think i'm on anything that would stop it from working, but everything i'm on is in my signature.

Hopeful4uc,

I was just updating a post I had originally put up that you had replied to and was wondering how you were doing. Went looking for you and found this thread, I see that you are doing well. Praise God. Continue the diligence and patience.

Gonk,

Curious do you eat much sugar or any intake of alcohol?

srry to pop in the middle of nowhere but several days ago I found out that there's SCD compliant LDN(not acidophilus, lactose, avicel filler)

Has anyone heard of this?

I spoke with Dr. Hoffman from NYC and he told me that people react badly to non SCD oral LDN.

InSoFla said...
Gcoupe,
Welcome to the forum.

there's SCD compliant LDN(not acidophilus, lactose, avicel filler)

What does this mean?

I always recommend: sucrose filler in the oral LDN.
It's the only filler that isn't problematic.
What filler are you talking about?

I met with Dr. Hoffman who is pretty successful at treating IBD patients with diet and ldn for the first time and told me that he prescribes SCD compliant LDN, non lactose but dunno what kind of filler it is, from a pharmacy in NJ. It's free of sugar, starch, grains, gluten, dairy, and egg/

And it seems that a lot of people get it from Skip's so wanted to know if anyone from this forum knows about this.

Post Edited (GCOUPE) : 6/15/2013 6:48:36 PM (GMT-6)

GCoupe,

Do you know the name of the pharmacy in NJ?

Had to bump this topic...

I just started transdermal LDN 4.5mg on the 22nd of february. Recently I went through a very painful flare that came out of nowhere. I was working out, eating healthy, and very quickly my world turned upside down again. My mom thinks it was due to stress, and I think that has some part in it, but my lord, I couldn't stop it this time with the aloe vera and Inflaguard caps, so per InSoFla's gracious advice, I decided to give LDN a try through Skips Pharmacy.

My dreams have always been vivid and very deep, the only difference now, is that I actually remember each and every one of them when I wake up; scary!

Unfortunately, the LDN arrived after I noticed my body was recovering. And this time, I don't know what kicked this flare. I was instructed to go up from 800mg of asacol to 800mg 2x daily at least, double the inflaguard, bone broths/juice fasts and UltraInflamX protein shake. I was going at least 10 times a day at one point. Lost alot of weight because jeans actually fit my calves now. All that hard work and gains from working out!! God, i'm so angry that it happened again.

I truly hope the LDN can sustain a remission for me, because 9 months out of my life i'm OK to doing well and then boom the flares are absolutely excruciating for 2 weeks!

Anyway, thank you for the suggestion InSoFla, i'm so glad I have you and others from this forum to count on, as well as my doc who OK'd LDN too!

Stereo,

My pleasure.
I'm always here for you.


Soystud is right about the iron - hold off on it for now.

Is this the current thread on LDN?

Its been just about 3 months since starting transdermal LDN 4.5mg (1mL) nightly and i'm here to report that i'm doing great. I still remember all of the questions I had at the start of LDN ("after a glass of wine or two is it okay to take LDN? What happens i skip a night? I took too much! Now what?")

I notice that sometimes I have vivid dreams, and other times I can't recall that I had anything. I alternate wrist/forearms when applying the cream nightly. This is the right thing to do right?

At three months, I don't have a rash or red bumps, but occasionally, I do wake up itching my wrists a bit.

I'm consuming a lot of fermented food lately, am able to enjoy eating out (GF) at least once a week and have a few beers/wine from time to time and feel okay. Sometimes, my poo is mushy or can easily break apart and thats when I start to get worried, or what appears to be a reddish color mixed on TP, but I can never tell. I pray that things stay the way they are, i'm going to practice what a therapist taught me 'thought-blocking' -negative thoughts that might leading to gut issues.

I'm graduating with my MFA in two short weeks and am hoping to make a move to Denver or Los Angeles within the industry! My mom just told me that our longtime neighbor (whom has crohns) has a very physically fit and active son i've known since I was a youngster, just diagnosed with colitis. This was a shock to me! I'd be happy to copy and paste a photo. It's very interesting to me, just another eye-opener that people of all shapes, sizes, colors can be impacted by this disease.

How is everyone else doing with LDN?

Thanks for the update stereoman. Glad that LDN is working in conjunction with the other dietary modifications.

Wishing you the best of luck in LA or Denver... Enjoy the weather in LA or the weed in Denver.

Hey laughingduck,

Did you stay on the 3 mg for LDN or move up to 4.5? We started around the same time, and I was seeing improvements but I seem to have taken a turn for the worse. I have only been taking 3 mg, but now I'm wondering if I need to bump it up to 4.5. I really don't want to go on Imuran.