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Almost 3 months on LDN

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Crohn's Disease
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Posted 8/21/2011 5:36 PM (GMT 0)
Hello everyone. My 21st birthday came and went yesterday, and I wasn't able to have that beer. On the 25th of this month, it'll be my 3rd month on LDN. I haven't improved one bit since my last updated. I'm really starting to lose hope for LDN working for me. I'm going to give it 1 more month. If I don't see any signs of improvement, then I'm ditching it. Right now I'm suffering. My fistula keeps abscessing, I'm going to the bathroom often. I have severe rectum pain. I just don't know what to do anymore. I have to drive to Ohio today from NJ because my classes start this week. I'm usually okay with that drive. It just sucks, I was hoping for a new semester feeling great after 3 months on LDN. Maybe that was just wishful thinking. I just felt the need to vent to someone. This is really, really starting to get to me. I see no light at the end of the tunnel right now. I don't have many options left.
Posted 8/22/2011 12:56 AM (GMT 0)
bb12:

I'm very sorry to hear that things aren't improving on LDN. If you decide to scrap the LDN plan, then make sure you get into your GI to discuss another treatment plan. I seem to remember that you've already been on Remicade, but what about Humira or Cimzia? Have you tried the typical immunosuppressants like Imuran, 6MP, and Methyltrexate? 

I think you should get a referal to a colorectal surgeon or some other specialist to deal with the fistula as well.

You far too young to give up hope, you'll get through this somehow and finish your education. You'll find the right options that are out there for you. Good Luck with everything.

Posted 8/22/2011 2:49 AM (GMT 0)
Thanks 73monte. I have a seton placed on my fistula, but it doesn't seem to be working properly. I've been on Remicade and 6MP but none of the others. I'm young and nervous about them you know? However at this point I'll take anything that will help me. I'm not giving up quite yet on LDN, I'll give it another month to see what happens. If I don't see any improvement, and I mean the slightest improvement, then I'll drop it. I will finish school, I will get through this. It just gets tough sometimes as you know. Thanks for the encouragement! : )
Posted 8/24/2011 6:41 PM (GMT 0)
I am sorry that so far you have not seen any improvement with LDN. Do you know what kind of filler the pharmacy is using ? Talk to the pharmacist and ask questions! I am taking LDN since the end of Jun. and was not seeing a big improvement. I called the pharmacy and asked what kind of filler they were using for me. I was told that they use Avicel, which is a kind of cellulose. I had a problem with that filler, gave me diarrhea,  &  nausea.  they changed it with acidophilus. I am feeling better and do not go to the bathroom as much as before, or have abdominal pain !

Do some research about the fillers they use. It could be that the filler they use is not right for you. If you can try to use the liquid form, I read that it is the best !!

Good luck, and do not give up yet !

Posted 8/24/2011 10:06 PM (GMT 0)
Pharmacists are using different fillers, some are compounding LDN with lactose fillers, and I have even heard that doctors have prescribed a wrong kind of LDN with slow release. (Some may react to lactose, and slow - release LDN is not doing any good to you)


Make sure to specify that you do NOT want LDN in a slow-release form!

Reports have been received from patients that their pharmacies have been supplying a slow-release form of naltrexone. Pharmacies should be instructed NOT to provide LDN in an "SR" or slow-release or timed-release form. Unless the low dose of naltrexone is in an unaltered form, which permits it to reach a prompt "spike" in the blood stream, its therapeutic effects may be inhibited.

Fillers. Capsules of LDN necessarily contain a substantial percentage of neutral inactive filler. Experiments by the compounding pharmacist, Dr. Skip Lenz, have demonstrated that the use of calcium carbonate as a filler will interfere with absorption of the LDN capsule. Therefore, it is suggested that calcium carbonate filler not be employed in compounding LDN capsules. He recommends either Avicel, lactose (if lactose intolerance is not a problem), or sucrose fillers as useful fast-release fillers.

IMPORTANT: Make sure to fill your Rx at a compounding pharmacy that has a reputation for consistent reliability in the quality of the LDN it delivers.

LDN is not working if you're having a candidiasis. A candida over growth is a big hinder. Please, take stool tests to find out if you have got candidiasis. This is quite common when having Crohns.
Posted 8/25/2011 9:12 AM (GMT 0)
Belated Happy Birthday and I am sorry you weren't able to celebrate quite as you had planned. I am also very sorry the LDN is not helping - time to go back to your specialist maybe for a full review before classes restart?

really do feel for you - if it is any consolation my crohns has less impact on my day to day life now than 20 years ago when I was in my late 20s and it was really debilitating so please keep thinking there is something out there that will help put and keep you in remission - all you have to do is find it (the hard part!)

take care
Lesley in NZ
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