LDN?

LDN may improve both moderate and severe Crohns. And it works on a highly individual level, you'll never know at whom it will hit in, or when it will hit. For me personally the first thing that I experienced was the very first day after I took my LDN at night (3.0 mg), my pain and swellings was gone. I have to say, though, I don't think I have had the hardest pain you can have. But the pain was giving me no rest, and I had to zip my pants and walk with it unzipped every afternoon, because the pain and the swelling was too much. I often had obstructions, (a couple of times every month), and I was heading a surgery at fall in 07. I have used LDN for more than 3 years. And I still haven't had that planned surgery.
It's often neccessary to follow a diet with LDN, but I am not so sure how restrictive it have to be. But avoiding sugar, wheat and milk products could be of great help. Some people don't need to do so, so you just have to try yourself.
Personally, I am on a gluten free diet. That is; I eat glutenfree breads, avoid everything containing wheat, and eat whatever I want except this.

It's also of great help to eat fish liver oil and vitamin D, probiotics is also ok.

LDN is not giving you any side effects at all, some of us do experience some slight sleep disturbances (20 %), often getting too much energy when it's bedtime, but this is only initially, after a week it's often regulated to a normal level.
You will find yourself getting much more energy while on LDN, pain will be reduced, cramps, bleedings, fistulas and abscesses may go away and obstructions will only be if you're getting a flare. The flares is often mild and of a short time span, a flare for me is often there due to stress, and if I am avoiding stressful situations or working too hard, I don't flare.

If I do, I prefere to take a short (often 14 days to 3 weeks) with prednisone. Dosed from 10.0 mg and down, but with a few day on higher doses before I taper to 10) This have worked while flaring every time!

If you are in the U.S. you could call Dr. Skip or one of his staff at www.skipspharmacy.com. He know how to make the LDN and how the doses should be.

Just a few doctors is familiar with LDN, so, please go to: www.ldnscience.com or www.ldnresearchtrust.org to get papers to inform you GP. www.ldninfo.org is another site that is containing a lot of info.
www.ldndatabase.com is letting you know how people with Crohns have tried LDN and how it has worked for them.

I'm gonna take my first dose of it tonite. Getting the solution ready now

If anyone is interested, and I can find it I have research that Dr. Jill Smith of Hershey Med Center did with LDN. She is the doctor that prescribes me LDN. She did a study on it and she emailed my mom the information. So if my mom still has it and anyone is interested I ca forward the email on to you.

Let me know!

I'm not sure yet if it has benefited me yet because I just finished prednisone, but I haven't noticed any negatives about it.

I got mine from my GP. She was reluctant at first and even called my GI's office for their approval but he was not there. When I told her all I needed was 3 pills of Naltrexone (50mg each) she smiled and gave me the script. Later on she called me on my home number and said my GI had okeyed everything. Will see how it works for me here...

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Cupcakespinkgal, great that you started again, and that LDN is working good for you so far.

Endeavour08, I would love to have that research emailed to my address, that would be great. Thanks in advance

Ari, good luck, please, tell us how you're doing.

LDN is, as earlier mentioned, working on an individual level. As I said, it worked from day one for me, a few things changed immediately, the rest of the symptoms gradually dissapeared or got much less annoying.

Within 10 - 12 months I felt super, and hadn't changed my diet, except for using cod liver oil and home made yogurt to get huge amounts of probiotics. Both these are reducing inflammation. (Cod liver oil is containing vitamin D and omega 3, both is excellent in reducing inflammation, and probiotics is balancing a disturbed gut flora, which in turn may lead to rebalanced and increased immune function).

I was very anemic when I started using LDN. I had bouts of flares which all lead to obstructions, obstructions, obstructions. They were severe and I used to vomit for 12 hours with fever and freezing attacks. I could barely eat any fiber and fruit, so each month I had several obstruction happenings. This was too hard for me. And I did not get any medication except prednisone, which I only could use for some weeks, because of a cancer diagnose, my GI was worried that my cancer could return.

I am so lucky to have found LDN. This medicine is special, I have to admit, because it is increasing the OGF, the opioid growth factor within the cell, it is believed that OGF is fighting inflammation (and certain cancer types). You can read more on this at www. ldnscience.org. I personally have a friend that has got her MS halted and reduced MS symptoms, I have another friend with an autoimmune disease that on day one after she started LDN had no more pain, and has been well now for 3 years.

LDN is not a cure. But it might be an alternative if you can't or won't use any immune modulators or other Crohns treatments. But you need to stick with it for half a year or more untill you know if it will help. So it could be wise to use it with a mild Crohns treatment like Asacol.

Warning! Many people get increased diarrhea initially. Check that the filler is not made of lactose. Check also that you don't have a candida overgrowth. If you have got one, get rid of it, and LDN will work great again.

Post Edited (BeeSting) : 1/13/2011 1:40:17 PM (GMT-7)

For those of you who asked I should be able to send to you sometime tomorrow! I didn't forget : )

So I tried it last night and woke up with severe pains and spasms. I think 3mg to start with is a little too much and I'll lower it down to 1.5mg and go by the book from there on. I can't do it tonite tho as I took some codeine and 20mg of prednisolone to see me thru the pain, but I'll try again as soon as this has settled down a bit. I may even leave it till after my op which is due on the 16th next month, well, that's the plan anyway.

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That's what I want to do tonite. The drugs I took last night were more of a one-off thing so I think I can start back on LDN no problem. I'll let you know how it went tomorrow.

I skipped the candida issue by switching to LDN skin cream. that's an option as well you might look into. It's been like magic for me.

So is LDN a prescription you have to get from your doc or more of a natural alternative? If your doc hasn't heard of it, how do you get him on board to prescribe it? Is it a pill?

There are also compounding pharmacies out there that can make any size pill/capsule you need...

Stephanie,
LDN is a low dose of a naltrexone capsule. Naltrexone with different brand names, one of them is Revia, is given in doses up to 200.0 - 300.0 mg a day to people with drug problems (only treating heroin addicts), this medication, but in a low dose (LDN) is going to the same receptors as it does for that patient group. A nevrolog dr. with his privat office in New York, dr. Bernhard Bihary found in the 1980' that he could give the low dose (4.5 mg) to his MS patients. This little pill, with no side effects, well known to make neither medium nor serious side effects at all, is terrific, because in MS patients it's known to halt the progression of the disease, and often, as an extra bonus, it also reduces the symptoms. You can google MS and LDN and find a tons of interesting stuff to read.
You can read more on dr. Bihary and all the other diseases LDN may help. Dr. Bihary has been scripting this medication to all kind of autoimmune diseases since the 80'. LDN is known to improve the immune system, by increasing the opioid growth factor or the met enkephalins in our immune system.

Your doctor might not know LDN at all. It's now stipulated to be used by 100 000 patients all over the world, and it's said that this generic medication will be a great treatment in the future. LDN has been known because the patients is asking their doctors to get a script, their doctors may be don't know LDN at all, so their patients is bringing information found on sites like the ones I have here. It's smart to let your doctor get good info and do some research on it first, and after she has done that, you could ask for a script. Most patients do like that, they give some written info to their GP, (the Gastroenterolog in more reluctant to write a script), and return to a later appointment to hopefully get a script. It's 100 % legal to write a script on this medication.

LDN could be written in the dose as Naltrexone, a 50 mg capsule. This capsule needs to get into a sterile water solution. (Google how). You can also get it in pills with different sizes. You or your doc may take a call to Phd.dr. Skip at www.skipspharmacy.com (US) Dr. Skip has trained staff to inform doctors or patients on LDN.
Here's a forum made by LDN users, giving info on other pharmacies, even online pharmacies:

http://ldn.proboards.com/index.cgi?board=forum&action=display&thread=1820
The official LDN site:
www.ldninfo.org
The Scientific LDN site:
www.ldnscience.org
The LDN database, read more on different diagnoses / users results on LDN: (you'll find Crohns there, too)
www.ldndatabase.com
Dr. Chris Steele is informing us on
http://www.youtube.com/watch?v=5p5nhzP2OaI

Oh, and don't bring too much printed data to your GP, they are very busy, and it may probably hurt your case to give them more than a few lines. Highlight the most important info.

Post Edited (BeeSting) : 1/17/2011 2:36:46 AM (GMT-7)