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Ulcerative Colitis
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Posted 10/27/2013 3:12 PM (GMT 0)
Good morning,
Just wondering who here is currently taking or has tried LDN.

Is that all you take or do you use enemas too?

I am trying to figure out what to try next.

Steriods causing puffy face and weight gain, not moon face but there are some uncomfortable changes.

I can't use mesameline ennies! So weird. But my body over reacts to too much of that.

Thanks much
Posted 10/27/2013 7:56 PM (GMT 0)
DMC,

I am on LDN and it put me in remission.

I strongly recommend anyone with UC or Crohn's try it.

If you need more info on LDN, there's a good post on the UC Resources page.

And feel free to email me if you have any questions as well.

P.S. there have been several threads on LDN, you can do a search on this site

Posted 10/27/2013 9:49 PM (GMT 0)
Thank you. I thought of you. Do you take any other meds with it? Think i am going to ask dr tomorrow for pres. I will keep taking corteenema while i get the ldn going.

I hope this will be next step. Gotta get off streroids.
Posted 10/28/2013 6:36 AM (GMT 0)
Hello InSoFla,

One quick question for you....which would be absorbed better in your opinion LDN pills (containing only dextrose) or the LDN drops (LDN mixed w/water and pg).  Thanks!

Posted 10/28/2013 6:21 PM (GMT 0)
Feeling pretty lucky! The pharm where my dr is located makes LDN, so i spoke to her today. All i need now is presc.

Q if you read this SF rowasa is out of stock, they cant find it anywhere! ;-( not so lucky with that. So still looking for a solution there.

We really do have to jump thru hoops and be our own advocates!
Posted 10/28/2013 6:23 PM (GMT 0)
Dude i am going with capsules. Make sure you specify NOT time release. And know what kind of filler you want as in if you are lactose intolerant or not.

I hope this stuff works because it seems to be the safest with least side affects!
Posted 10/28/2013 6:30 PM (GMT 0)
Just wanted to comment and say that LDN is useless without diet modifications, unless you have the metabolism of a kid.

Put emphasis on grass fed meats, organic veggies, copious amounts of saturated fats in the form of lard, beef tallow, butter, etc for butyrate.

Avoid grains, dairy, except raw milk or raw cream if you can handle it.
Posted 10/28/2013 7:08 PM (GMT 0)
Raw milk? I thought you were supposed to stay away from grains and dairy period.

I eat veggies, fruits and chicken. I'm fine even without organic or grass fed.
Posted 10/28/2013 8:00 PM (GMT 0)
I dont eat lots of grain, but will research this more! Thx!
Posted 10/28/2013 8:32 PM (GMT 0)

Sibby said...
Raw milk? I thought you were supposed to stay away from grains and dairy period.

I eat veggies, fruits and chicken. I'm fine even without organic or grass fed.

Hi Sibby,

Commercial dairy is almost always poison, but there are exceptions to grass fed dairy from, say, an Amish farm. You really have to visit the source and find out how the cows are treated.

I don't want to get too much into this because it's a source of controversy here, but raw dairy is a healing food, particularly kefir, if you can tolerate it. There are incredible benefits from it - probiotics, CLA, omega-3s, nutrient density, etc.

I've seen people rise from the grave with kefir alone. It's really a miracle food once you can handle it.
Posted 10/28/2013 10:21 PM (GMT 0)
They want 52.00 for 30 caps is that a lot???
Posted 10/28/2013 11:42 PM (GMT 0)
Did you try Skip's pharmacy in Florida? I think that is about right depending on the dosage (4.5 mg).
Posted 10/29/2013 12:52 AM (GMT 0)
Yes 4.5 mg. I pick it up tomorrow. I am going to start it right away even though I am not paleo right now. Just want. To get started and I know it takes some time.

My doc does not want me to stop Apriso!!!! Bummer.
Posted 10/29/2013 1:41 AM (GMT 0)
It would be beneficial for you stayed on Apriso. You can take LDN with other medications. It may be better to slowly go up to 4.5mg, given that it can cause insomnia, or sleep disturbances.
Some have said that they couldn't sleep. Some said it didn't bother them. about a few weeks after starting it should ease up if it bothers you.
What filler are you using?
Posted 10/29/2013 3:13 AM (GMT 0)
you really don't know if you have an issue with milk until you try raw -
Posted 10/29/2013 3:46 AM (GMT 0)
Hi Sibby, she is going to use plant based cellulose. How do I cut the dose? I assume it is in capsule form. Would hate to lose too much sleep! I heard the first week could be the worst but it goes away.

I was kind if hoping to get off all meds but that might be unrealistic.
Posted 10/29/2013 3:47 AM (GMT 0)
I just really want to get off cortenema mostly. Steroids.
Posted 10/29/2013 4:16 AM (GMT 0)

soystud said...
you really don't know if you have an issue with milk until you try raw -

I crave raw milk all the time. Add dessicated liver powder to it and you have the most complete food in the world.
Posted 10/29/2013 4:42 AM (GMT 0)

DMC2011 said...
I just really want to get off cortenema mostly. Steroids.

I know the feeling. I'm only on LDN. But yes, you can use 5asa and LDN together. I don't think you can cut the dose when it's in capsule form.
I have liquid. I purchase the Naltrexone (Revia) pills, then mix equal parts water with dose. 50mg to 50ml. Easier, cheaper and you can find the right dosage for you, example: 3.2mg instead of 3.5mg.

If cellulose hasn't bothered you in other meds, like vitamins, then you should be good. It's very subjective too. I didn't have any sleep issues. Same with you seeing a reaction.
Posted 10/29/2013 2:42 PM (GMT 0)
I am now feeling a little aprehensive about starting. I had a little issue this morning AND trying to get reflux under control too.

I dont just want to add another pill to the mix either. Then after i bought the pills i read about the liquid and the under the tougue delivery!

I will call pharm and see if that can be changed because i do want to introduce it slowly when i start!

But kind of bummed that have to stay on all the meds!

Gah!!!!!!!!!!!!!
Posted 10/29/2013 2:48 PM (GMT 0)
Sorry, I've tried researching LDN and all I can really find about it is that it is a drug to stop addiction to other drugs....

I have seen some things about LDN and UC, but do not understand how or why it works for UC. Also, what classification of drug is it?
Posted 10/29/2013 3:38 PM (GMT 0)
Go to the ldn website, its a .org. Lots of info.
Posted 10/29/2013 4:28 PM (GMT 0)
Ok i just called and they are going to make it in different str. I have no idea but i told them to do 1.5 for4 weeks, 2.5 for 4 weeks, 3.5 for 4 weeks and finally 4.5.

That makes me feel somewhat better to try it when i do.
Posted 11/5/2013 12:43 PM (GMT 0)
DMC,

How are you doing on LDN? Which filler again?
Posted 11/5/2013 12:48 PM (GMT 0)
Dude35,

Sorry I didn't answer your question earlier, but I never got notified there was a reply.

I think that sublingual drops would be best, and next up would be pills with sucrose filler ( or dextrose).

BTW, next time you have a question, feel free to shoot me an email.

:-)
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