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

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Ulcerative Colitis
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Posted 7/29/2011 7:47 PM (GMT 0)
jray1971,

Glad you finally got the LDN. Who prescribed it for you: your GI or alternative doc?


 

Posted 7/29/2011 7:55 PM (GMT 0)
My alternative doctor did. I want to let my GI doc know after it works! Hopefully by my appointment with him in October it will have helped!! He knew I was going to try some alternative medicine to prevent the problem. It will be so fun to let him know if it works!!
Posted 7/29/2011 11:04 PM (GMT 0)
jray1971-
I wish you luck in your healing journey with LDN.  Today is day 14, and I had a normal stool this morning with little sense of urgency.  This is the second time I'm had normal stool....like the way they are suppose to be....
I feel this is the ticket, in addition to diet to aid in the healing process.  I did however eat some frozen yogurt and it sat ok, did not have urgency like I use to after I ate it.  I also take VSL3 pro-biotic to get the good bacteria in the gut.
I too had to get the LDN from an alternative physician, and I too can't wait to tell my GI that the LDN has worked and that he really needs to consider this as a true treatment for UC.
Please keep us posted on how you are doing! 
I'm spreading the word as well, my cousin from Munich, Germany is visiting and has a friend with UC and I'm passing on the LDN information/website to pass on to her friend.  I would do anything to help people with this disease! 
Posted 7/30/2011 7:20 PM (GMT 0)
Oh my gosh!  I am having a bit more normal stools today. 

Day 16:  This morning my stools were a bit more normal, very, very little blood and limited urgency.  I do have a bit of pain, but I'm sure my colon is not used to the formed stools and is probably sore.  I actually have been eating a wheat bun to see if I can bulk my stool and see how I react.  So far so good.

I will continue to post my progress as things go.

I'm so excited to feeling better, it's just been hard to believe.

I also keep up with the L-glutamine, VSL3, liquid multi-vitamins, I also like slippery elm, B12 helps my energy, also vitamin D3.

 

Posted 7/30/2011 8:25 PM (GMT 0)
Hopeful4uc,

Glad to hear of your continuing progress.

I wouldn't recommend any wheat products, at least not yet.

Keep up the great work!

Posted 8/2/2011 3:55 PM (GMT 0)
I am on day 4 of 'FT' treatments, less bleeding and a few less trips to the bathroom with 'D'; and my LDN arives today..it has been suggested I wait to start anything else until after the FT treatments so that I will know what is working..however I didnt expect LDN to work within days so any advice as to whether or not to go ahead and start the LDN tonight?
Posted 8/2/2011 6:33 PM (GMT 0)
jray1971,

You're doing home FT? That's great. Good luck and I hope it works out.

If you are on SCD diet, or close to it, it could take 7-10 days to see the impact of LDN.

But yes, I would recommend your taking LDN, as it will just serve to "Boost " your immune system and make you feel better overall.

Keep us apprised of your progress.

Posted 8/2/2011 8:30 PM (GMT 0)
Has anyone had the vivid dream side effect from the LDN? Dr. Skip told me to fall asleep with ahppy thoughts because dreaming would be very vivid! He told me that when your immune system is compromised that you dream less, which is true, I can tremember the last dream I had. He said with LDN endorphins are released and dreaming will return. :) Happy thoughts are good!
Posted 8/2/2011 11:05 PM (GMT 0)
jray1971,

Yes, Skip told me the same thing.

I only watch good/funny tv shows before going to sleep, and am careful not to watch any scary/horror movies as well.

Yes, very vivid dreaming - and it's been a long time since I hadn't remembered any dreams (prior to LDN).

I don't think it's bad....

Posted 8/3/2011 11:56 AM (GMT 0)
I took my first LDN last night and had TERRIBLE abdominal pain all night, I am exhausted today and so scared I am the lucky one with this side effect!! Uuuuggh why me?!! Its on the list as a possible thing...I havent had pain like this luckily at all with my UC. It was like dry heaving out the wrong end, like sharp gas pain with no gas all night, and lots of bleeding while I was sitting unproductively pushing and pushing with of course nothing happening. I'm not discouraged and will try again tonight, I hope it was a fluke because I could just cry if this chance at relief is taken away from me. :(
Posted 8/3/2011 12:04 PM (GMT 0)
jray1971,

I'm so sorry about the abdominal pain. Do you know which LDN you got, with which filler? Many have a reaction to the filler, especially if it's avicel.

Can you find out which filler your LDN has? And maybe you can call the pharmacist and see if he/she can give you the LDN with a different filler, i.e. hypo-allergenic formulation?

Posted 8/3/2011 12:55 PM (GMT 0)
I got it from Skip after lengthy conversation about my UC. He was wonderful to talk to!

Its made witht the most hypo-allergenic filler they have. Abdominal pain is on the list of side effects that was attatched to the perscription, I just really thought the dreams would be the worst of it. I will try again however, it will crush me to not have the opportunity to try LDN!
Posted 8/3/2011 1:00 PM (GMT 0)
jray1971,

Why not talk to Skip again and see if he can give you Transdermal LDN instead?

That's the type of LDN I always recommend to avoid reaction to fillers, absorption issues, etc...

Transdermal LDN bypasses the gut entirely - so you won't get any stomach pains at all - and gets absorbed directly into the blood stream.

What do you think?

Posted 8/3/2011 1:19 PM (GMT 0)
I already have a call in to him. :) We had previously discussed the transdermal and he explained why the oral was a better more direct route to healing for me as transdermal has many layers of skin and fatty tissue to go through. But with that side effect it may be my only choice. :(
Posted 8/3/2011 5:42 PM (GMT 0)
Dr. Skip is having me hold off on starting the LDN until after my Candida IV treatment is over this weekend. So it may not have been the LDN, I will report back next week! :)
Posted 8/3/2011 11:13 PM (GMT 0)
jray1971,

Glad you were able to get input from Skip.

Keep us apprised of your progress.


 

Posted 8/6/2011 12:54 AM (GMT 0)
InSoFla:
Well I think I'm having a blip.  I currently am taking LDN at about 3.0 or 3.5mg, wondering if that is the reason for the blip and the stomach flu went around at work, a quick 24 hour thing, but that gave me big time D and tummy ache.  Also I'm wondering if Rice Dream has an ingredient that bothers me, I've also tried Almond milk and that gave me D.  There are so many chemicals in foods it's hard to know what is really safe or not. 
My plan to increase LDN to 4.5 tonight, increase L-Glutamine, increase VD3, try aloe vera juice and olive leaf extract.  I will keep you posted, still have energy though and not having as much D as I use to before LDN.  Just need to give this time.
Posted 8/7/2011 5:58 PM (GMT 0)
Hopeful, you ought to try making your own almond milk. There are plenty of recipes online, and once you get good at it and have the proper tools, it takes less than 5 minutes to make 4-5 days worth.

Careful with the Olive Leaf Extract. I tried that myself for a while, liquid version at high doses (2-3 tbsp a day) and it gave me a godawful increase in symptoms. You could say that was the OLE killing off bacteria and it was just a Herx reaction, but I wasn't convinced, and I stopped.

Storebought Rice Dream and Almond Milk have lots of added sugars and crap in them. Doubtless that's not helping you.
Posted 8/8/2011 12:45 AM (GMT 0)
Hopeful4uc,

Sorry about your blip. You mentioned the stomach flu has been going around at work, perhaps you've caught that? It's possible the LDN is lessening the effects of the stomach flu for you, and your symptoms are not as severe as others are suffering?

I think you may be trying too many things at once. I understand your wanting to get better quickly, but I agree with badslinke on cutting back on the OLE, acually putting it on hold for now would be a good idea.

And I think his idea of making your own almond milk is a good one too.

How much VSL are you taking?

Can your doctor prescribe you VSL #3 DS (double strength) to take 2 packets x 3 per day?

If you it might be covered by your insurance through a simple copay.

What do you think?

I hope you start to feel better soon.

Posted 8/8/2011 3:16 AM (GMT 0)
Thanks for the advise.  I agree with the OLE, I'm a bit nervous to try it.  I already did the 7 weeks of nystatin and I did feel like crap for about 3 days yet I did achieve one normal, real normal stool.  But I just need to give the LDN more time.

My insurance doesn't pay for the VSLDS so it's $200 out of pocket, no go for me.  So I'm upping my VSL3 to 4 a day now and see how it goes.  When I increased it before I got a pain in my upper stomach.  I am however looking into getting the physilum seed and try that.  I think I read somewhere that it helps increase the correct acid or something that us UCer's are missing.

Also, diet is a big thing.  I'm back onto the boring no gluten, no sugar, minimal yeast diet....I just need to be strict on this.  Need to shop at natural valley foods and get the good stuff, find pasta that's made with rice.  I do really well on rice...to maintain my weight.

It's been about 3 1/2 weeks now on LDN.  Tonight at full strength 4.5..see how it goes. 

Will keep you posted.

How are the rest of you doing?  I just can't wait for the achievement of remission....can't even imagine what that would be like, because I've never had remission before...

 

Posted 8/8/2011 12:01 PM (GMT 0)
Hopeful4uc,

Sorry about the blip.

Yes, I think you're right, hold back on the OLE.

It's good you'll be adding more VSL.

As far as diet is concerned, as boring as the SCD is, it will give you better results in general, and will be compounded by LDN. I believe it's the non-SCD diet which we force upon our colons because we love those foods - which inflames and irritates our colons even more and therefore makes healing of the colon more difficult. So if you can stay on the SCD and give your colon a change at healing by not giving it the inflammatory foods, then LDN can do more of its' job by creating a more permanent healing, no?

BTW, are you drinking plenty of good water?

Have you ever had your Vit. D blood tested?

Posted 8/8/2011 6:04 PM (GMT 0)
I'll post this here, don't want to start a new thread just for this.

Does anyone know if the studies showing LDN with good results had the patients stop taking any and or all of their other IBD meds? I know people usually use LDN with other meds, so I didn't know how the studies were set up.
Posted 8/9/2011 12:17 PM (GMT 0)
Levi,

Good question.

Actually the Dr. Jill SMith studies from Penn State with Crohn's patients, had all patients continue using their meds except for 6mp,humira,remicade. And all patients achieved great results.

LDN is usually recommended to be used in conjunction with other meds, which over time when you improve you can start weaning yourself off of.


 

Posted 8/9/2011 12:19 PM (GMT 0)
Hopeful4uc,

How are you doing?

Have you thought about adding Organic  Slippery Elm Bark Powder - 3 times a day - @ 1 tablespoon in a little water?

IMO it is the equivalent of 5asa without the side effects.

What do you think?

Posted 8/10/2011 12:42 AM (GMT 0)
Pretty bad day:
Got the urge and yep you guessed it, didn't make it to the restroom.  Thank God I was not at work, I was leaving and whamo, had no control at all.  And then my car broke down, ugh...so thankful that my husband is supportive. 

So, not being on anything else may not be the best answer.  I do have about 5 mesalamine enamas to use, so I will start tonight, and get more from the GI.    This sort-of helped the inflammation if I remember from before.   Been on LDN for about 27 days now.  I do have energy, but I seemed to have stalled out now.  I also had a bit of a tummy ache right before I got the urge, so probably the colon moving things?
So, I'm a bit frustrated, but I will give this the long haul.  However, before the "accident" I didn't have to go at all during the day....so how do I make of this.  Stools are not formed, but a bit mushy.  Less bleeding, but still there.
It's like one step forward and one step back.

Need some encouragement.  Could I be doing too much?
*sigh*

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