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06-25-2011, 07:32 AM   #1
BosnianboyCD
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Join Date: May 2011
Location: Kent, Ohio
One month on LDN

Hello all. Today is officially one month since starting LDN. After some major set backs around the two week mark, I can say that I'm starting to see some improvements. There isn't blood as often, my stools are starting to look better and feel better, I don't have to go as much anymore. OH, and my fistula is feeling a hell of a lot better now as well.
Two weeks in while taking LDN was terrible for me. I was bleeding a lot, running to the bathroom and just plain suffering. I never had stomach pain like that before. I though maybe it spread to my small intestines. All I know is that I'm feeling some relief now and I hope this keeps up. My 21st birthday is coming up August 20th. All I want for my birthday is to be able to drink ONE beer with my friends without any consequences pertaining to my crohn's disease.
Let me tell you, LDN isn't a walk in the park. Anyone who is going to start taking, don't expect it to work overnight. Some people get worse like me. I'm still not great by any stretch of the imagination, but any progress to me is good. I'll keep you guys updated next week to see if this up trend continues.
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21 year old student at Kent State University. Born in NJ lived in Bosnia for 6 years.
Diagnosed in 2003 at the age of 13 with UC. 2011 Diagnosis changed to Crohn's Colitis.
Had a few remicade infusions. saved my colon. Ineffective now.
Currently taking eight pills a day- Sulfasalazine. Flaring up moderately.
06-25-2011, 09:30 AM   #2
Kev
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Join Date: Jun 2006
Location: Halifax, NS, Canada

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Hey Bos

If you are seeing improvement, that's a good sign. And you are right, LDN (at least in the early stages) isn't a walk in the park, as it doesn't treat IBD directly. The drug regimen one normally takes for IBD's at least attempt to thwart it or its symptoms, whereas LDN is simply a way of letting your body slowly tackle it on its own. Coming off those other drugs and dealing with the full effects of UC, CC or CD cold turkey isn't fun, and anyone considering switching to LDN needs to take that into consideration. It is very likely one will become and feel much worse before there is any noticeable change for the better. And that can be a lonely and frightening experience. And since there are no guarrantees that LDN will work, there can be a lot of second guessing. But, if it does work... it can be like salvation. I'm approaching my 4th anniversary of starting LDN, and life is pretty good. And I occasionally have the odd beer (or 2) without any issues.

All the best, let us all know how it goes.
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KEV

Dx'd July, 2006
Meds: Flagyl, Cipro, Pred, AZA.. to no effect
Low Dose Naltrexone Nov 2007 - May 2014
Remicade June 17th, 2014
06-25-2011, 10:34 AM   #3
BosnianboyCD
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Thanks Kev, I really appreciate it. It's people like you that make me feel hopeful. I don't feel alone. I won't give up on this drug. I expect it to be a roller coaster ride, but hoping it'll be worth it.
08-08-2011, 10:09 AM   #4
Bluezz
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Join Date: Aug 2011
Hey Bos,

I just started LDN three days ago and also got the med from Irmat. They told me they do not use lactose filler. I did ask, as I am lactose intolerant. You are right they are top on the list for compounding pharmacies from the LDN site!
I was just going to stop this drug because it started a flare up the very night I started it! OMG...this sucks! But after reading your posts, I may continue and suffer through. I fought very hard to get this drug and it was not from my GI, he said he had never heard of it and did not seem to interested. But my Rheumy did, after I flooded him with the info. Did your flare improve a little each day???
I am happy you are feeling a bit better
08-08-2011, 04:35 PM   #5
Kev
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Join Date: Jun 2006
Location: Halifax, NS, Canada

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Hey BB... You didn't need to thank me, because apparently my surmise on how LDN kicks crohns ass was totally off the mark. That's one of the major pitfalls to info gained from this site from well meaning but mis-informed folks like myself. Sometimes we are way wrong. In the olden days, when I 1st joined the forum, I'd typically start each post with a long winded pre-amble about how the folks on here aren't trained professionals (least not in the medical field) as a warning to newbies to take everything printed with a grain of salt (if your GI tract can handle it). I've been lazy (actually busy as hell working 60+ hours a week now that I'm healthy.. per se) and haven't prefaced my posts with that caveat of late. But its a good point to re-iterate... we're not Dr's, and the info provided is mainly anecdotal. I'm still not totally convinced even the so called experts know exactly the mechanics of how LDN works, but I'm living proof it does.
08-09-2011, 04:26 PM   #6
BosnianboyCD
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Bluezz, stick with it. Don't give up yet. Kev had a rollercoaster ride with and I am as well. Some people don't get improvements until four months.

Kev, you're absolutely right. I won't give up because I read your posts when you first started it. I'm going through the same thing as you.
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