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09-22-2008, 06:16 PM   #1
Crohns08
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Ldn

I did a search for LDN on here, and I didn't find much, so here we go.

I'm new here, and just posted my story over in the appropriate section. My father wants me to go on LDN, but I don't know much about it, and there are still studies going on for this drug. Are any of you on it? Do you experience the nightmares? Or are they just realistic dreams? Are there any other unknown side effects? And obviously, do you think it's helping?
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09-23-2008, 10:50 AM   #2
kromom1
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Crohns08 - I am planning on starting LDN probably in November. You can't be on any immunosuppressives with it, and can not take steroids while on it either. My doctor wants me to be off my prednisone, Humira, and Imuran for 4weeks before I start the LDN (which means probably a terrible 4 weeks of flaring!). From what I've read, vivid dreams and possibly some sleeplessness are the only side effects people have really reported. I'm excited to start LDN as I've failed everything else I have tried and really need to be off steroids as they are causing me to have diabetes, too. I hope someone who is already on it will post here and give us some more information. Good luck to you!
09-23-2008, 01:33 PM   #3
D Bergy
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I have been using LDN for about 8 months. It did affect my sleep somewhat during the first week or so. Now I do not notice any difference.

I had some more vivid dreams on rare occasions, but no nightmares. It really is about the most harmless drug one can use for any autoimmune disease.

It seems to be holding me in a steady remission so far. Of course it does not work equally as well for all people. I think of it as a good long term solution if it works well for you. It may take up to a year to be able to accurately assess how well it is working. It works in a very subtle way.

Dan
09-23-2008, 02:08 PM   #4
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Dan - How soon did you see improvement, were you in a flareup when you started taking LDN, and what dose are you on, if you don't mind my asking? Thanks for the info.

Lisa
09-23-2008, 03:33 PM   #5
D Bergy
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I was slightly flared but eliminated the flare before I started the LDN using an experiemental treatment using Chlorine Dioxide to eliminate two species of bacteria that I believe cause most Crohn's symptoms.

The product I used is called Miracle Mineral Supplement. It is actually Sodium Chlorite that is mixed with either vinegar or Citric Acid to produce Chlorine Dioxide. This powerful chemical kills most all acidic bacteria that it comes into contact with. After six weeks of internal use my flaring, which felt like it was mostly in the terminal Ilium area, was gone. I have not had another sensation or flare since that time.

After I was done with the MMS, I started my LDN prescription. I think the LDN is keeping me free of the two bacteria that may cause the symptoms. I also am no longer drinking milk, which is the source of one of the bacteria species.

The Chlorine Dioxide product is available on the internet as Miracle Mineral Supplement. It is experimental and all of its effects are likely not known. I have used it and my wife for Lyme disease. It does bother my wifes stomach after longer use so she had to discontinue its use. She also is sensitive to most all antibiotics and other substances that generally cause stomach irritation.

Dan
09-23-2008, 05:48 PM   #6
Crohns08
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Thanks for the information, I'm still trying to get LDN, but if we can't get it soon I will have to be on Entocort, I'm only on Pentasa, and I don't believe it's helping me. So if I went with LDN I would have to be off the Pentasa for four weeks? I'll be dreading that...

ETA: I just had another thought, doesn't LDN bolster the immune system? Wouldn't that make it worse?

Last edited by Crohns08; 09-23-2008 at 05:52 PM.
09-23-2008, 05:58 PM   #7
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No.. Keep taking your pentasa.. (5 ASA).. I continue to take my Salofalk, and adhere to a strict diet.. Now, at the moment things aren't great, but I had a great year thanks to LDN, 5 ASA and diet before I started my experimenting.
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09-23-2008, 06:28 PM   #8
kromom1
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From what I've read on the LDN websites, you only need to be off of steroids and immunosuppressives, so Kev is right, it should be okay to stay on your Pentasa.

Lisa
09-23-2008, 06:35 PM   #9
katiesue1506
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I think I'm the last person on this forum (that I know of) that takes LDN. I've not been completely successful with it yet, but I've only taken 3 months worth. I also have a hard time monitoring my diet. I'm hoping to be a bit more strict on myself this last month of pills. If it doesn't go well I may ask for Pentasa to see if itll help. If after that it doesn't work... then I dunno.

I still get vivid dreams, but they aren't scary... just very vivid and easy to remember. I like that part of LDN
09-24-2008, 09:20 AM   #10
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Okay, gotcha. Thanks for clearing things up for me guys!
09-24-2008, 11:27 AM   #11
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Katiesue - If you don't mind my asking...what dosage of LDN are you on (my doc says I will start on 4.5 mg), are you on any other meds with it, and were you in a flare-up when you started it? Oh, and did you have any sleeplessness, or just the vivid dreams? (I think the vivid dreams would be kind of neat, too, as long as they aren't scary) Thanks!

Lisa
09-24-2008, 11:31 AM   #12
katiesue1506
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Nope, no sleeplessness, just vivid dreams.

And yes I'm on 4.5mg. I was in a tiny flare before I started and now I'm in a more than tiny flare. I wouldn't say full blown.
09-24-2008, 04:35 PM   #13
ls1krab
 
I read an article where the patients were allowed to continue their meds if they were taken for a 4 week period prior to starting LDN. Remicade had to be stopped though. Here's the link:

http://www.ncbi.nlm.nih.gov/pubmed/17222320

Has anyone been in a severe flare-up and seen improvement with LDN?
09-25-2008, 10:41 AM   #14
kromom1
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Very interesting...

My doctor said I would have to stop all of my Crohn's drugs 4 weeks before starting LDN. I am very worried about this because I am pretty sure this will put me into a severe flare before starting the drug. I am going to show this article to my doc. Thanks Is1krab!!
09-25-2008, 01:39 PM   #15
Crohns08
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That would be the part I would dread. Having to go 4 weeks without meds...
09-25-2008, 08:55 PM   #16
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I took LDN for a few months near last Christmas, I'm not sure it completely got rid of the problem though it did stop all my cramping. While I was taking it I did not follow a diet, and where as before I'd get cramping once a week it completely disappeared after 3 weeks on LDN. Though at the same time I tried to totally stop eating fiber at that time as well.
09-26-2008, 07:18 AM   #17
kromom1
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AbstractDonut - Why did you stop taking LDN?

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09-28-2008, 01:52 PM   #18
jobengals
 
good topic convo... i'm only taking humira once a month anyway (thank goodness) so the 4 week wait would be pretty normal for me ... LDN definitely seems like a much safer method than always suppressing our immune systems and increasing likelihood of other diseases and infections.

When i still took azathioprine daily along with bi-monthly humira shots, I had crazy upper respiratory problems (constantly coughing and clearing throat) and all the infections (usually just small cuts and scrapes and scratches from longboarding) would take two months or longer to heal! That's bull. I'm very interested to hear more stories from personal experience, and i will definitely be talking to my doctor about this
10-01-2008, 10:13 PM   #19
AbstractDonut
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I still had problems with LDN, mainly a pain in my lower right quadrant. I could not sleep on my right side because is started feeling like someone was jabbing me when I was on my side. Also I noticed I had a lump there, which is finally what made me decide to quit the LDN. Then about a month later I got worse.

As I've said, other than that I had no problems. Just not 100% sure it was the LDN or the fact that I tried to eat nothing which contained fiber.
10-04-2008, 02:59 PM   #20
Crohns08
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If you don't mind my asking, how severe is your case?
10-19-2008, 09:22 PM   #21
Crohns08
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I started LDN last night. Didn't have a nightmare, but I had a really clear dream. It was very far fetched and unrealistic. If anyone is interested, I will update my condition on the LDN in a week or two when it kicks in.
10-20-2008, 04:16 AM   #22
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yes please do let us know how it goes i'm hoping to start it soon too.
10-20-2008, 03:16 PM   #23
kromom1
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I am very interested. I will be starting it in about a month. Are you still taking your other medications? What dose did your doc start you on?
Lisa
10-21-2008, 08:47 AM   #24
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Since nobody else is going to say it...



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10-21-2008, 06:26 PM   #25
Crohns08
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I am on a 3 mg dose for the first week, and I take it at 9:00p.m to reduce the chances of nightmares. Regualar dosage (4.5 mg) the rest of the time. I am still on Pentasa, and prilosec, my Dad weaned me off of the entocort. It didn't make sense to do the entocort and LDN.
10-22-2008, 06:18 AM   #26
kromom1
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Well I sure hope it works for you!!! Have you had the "vivid" dreams every night so far? Today is my first day off my medications - now my doc wants me to wait 4 weeks before starting the LDN (that probably won't be good!!) I will start on 4.5 mg hopefully in mid-November.

Lisa
10-26-2008, 02:44 AM   #27
jobengals
 
good luck guys i hope you keep everyone posted on how you feel it's effecting you. I brought the info to my GI but he sent an email denying a prescription due to lack of FDA approval... Going to have to find another source after i'm not busy being raped by schoolwork... cheers
10-27-2008, 03:18 PM   #28
kromom1
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Well, unfortunately now I won't get to start LDN for a while. I stopped all of my meds last Wednesday, like my doc requested, but yesterday started a massive flareup with 15+ episodes of slightly bloody diarrhea and some vomiting. Saw the GI today, and am going back on my meds (prednisone, Humira, and Imuran). Maybe after another 4-6 week taper of prednisone we will try again.

Crohns08 how are you doing on the LDN?
10-29-2008, 08:52 PM   #29
Crohns08
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jobengals, LDN has been FDA approved for aprox. 24 years...

sorry to hear that kromom1.

So far so good on the LDN! It's been about a week and a half, and I have had clear dreams for the first two or three nights, but they weren't nightmares. They were very odd and farfetched. I did take preventatives for no nightmares, I didn't watch any scary movies, or trailers before I went to sleep, just my favorite Soap opera or Conan O'Brien. I also tried to take it as early as I remembered, earliest you can take it is at 9:00 (which I was told)

I have been have the most normal BM's I have had since around Mar. - May range. I have headaches occasionally, and cramping, but nothing compared to what I experienced awhile ago. Headaches might be due to my having to be glued to a computer for school work though.

Last week I had a piece of chocolate overload cake, and no reaction! I even had a diet soda too! (Chocolate normally really upsets me)
10-29-2008, 11:32 PM   #30
RHOV
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i thought ldn hadn't been approved for Crohn's yet?
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