LDN and Pentasa
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HI Riversilt I can't help you but a few people are on LDN and may see your post. Dan Bergy is very knowledgeable about LDN. Hope you get some answers.
I can only speculate on what might happen since I do not know of anyone in quite your situation.
Many people get better then get worse and so on when starting LDN. I have a theory why, but I won't bother with that. Most do improve after several months of being on it, but it is not in a straight line. They suffer in between.
LDN is not a hard hitting drug. It does not even work like most drugs. The effect of LDN is indirect, so it works more slowly, and relies on the bodies immune system to clean up the problems in the intestinal tract.
All LDN does is trick the immune system into working harder, and hopefully, more normally. That is the theory anyway.
There really is no way to know how any individual will respond. It will not work at all for a minority of people that try it. Statistically, your odds are pretty good that it will work.
LDN is a treatment, and not a cure, so I would not expect perfection, and you still have to carry on your habits knowing you have Crohn's. If you start to abuse yourself, you will pay a price for it, but if you take care of yourself it keeps you pretty normal most of the time.
I have done exceptionally well on it, but I have other unofficial treatments I use also. I may not be as sick as others either. We all are different, but when LDN works, people are really glad they tried it. It changes their life.
I hope it works well for you.
Good Luck
Dan
Many people get better then get worse and so on when starting LDN. I have a theory why, but I won't bother with that. Most do improve after several months of being on it, but it is not in a straight line. They suffer in between.
LDN is not a hard hitting drug. It does not even work like most drugs. The effect of LDN is indirect, so it works more slowly, and relies on the bodies immune system to clean up the problems in the intestinal tract.
All LDN does is trick the immune system into working harder, and hopefully, more normally. That is the theory anyway.
There really is no way to know how any individual will respond. It will not work at all for a minority of people that try it. Statistically, your odds are pretty good that it will work.
LDN is a treatment, and not a cure, so I would not expect perfection, and you still have to carry on your habits knowing you have Crohn's. If you start to abuse yourself, you will pay a price for it, but if you take care of yourself it keeps you pretty normal most of the time.
I have done exceptionally well on it, but I have other unofficial treatments I use also. I may not be as sick as others either. We all are different, but when LDN works, people are really glad they tried it. It changes their life.
I hope it works well for you.
Good Luck
Dan
Kev
Senior Member
Hi Riversilt
I will be celebrating 3 yrs this Nov of being on LDN & 5-ASA (my version is Salofalk, just another variant my doc put me on. Why did my doc go with Salofalk VS Pentasa or Asacol?. My pet theory is that she was able to get more free samples of it than the other two, which she doled out to her patients like me who needed it but were too sick to work hence pay for it. That is just my pet theory on it, OK?
Anyway, I continue to take 4 g of 5ASA with my daily 4.5 mg of Naltrexone EVERY day. And I'm doing fantastic. It's a no brainer from my perspective... 5ASA is merely a buffered anti-inflammatory, and it won't interfere with LDN. In fact, it should augment it. (help fight the inflammation my immune system is working to overcome.)
Anyway, before I ramble too much, (too late).. taking 5-ASA AND LDN haven't caused me any problems to date.
Kev
I will be celebrating 3 yrs this Nov of being on LDN & 5-ASA (my version is Salofalk, just another variant my doc put me on. Why did my doc go with Salofalk VS Pentasa or Asacol?. My pet theory is that she was able to get more free samples of it than the other two, which she doled out to her patients like me who needed it but were too sick to work hence pay for it. That is just my pet theory on it, OK?
Anyway, I continue to take 4 g of 5ASA with my daily 4.5 mg of Naltrexone EVERY day. And I'm doing fantastic. It's a no brainer from my perspective... 5ASA is merely a buffered anti-inflammatory, and it won't interfere with LDN. In fact, it should augment it. (help fight the inflammation my immune system is working to overcome.)
Anyway, before I ramble too much, (too late).. taking 5-ASA AND LDN haven't caused me any problems to date.
Kev
Ok, that sounds reasonable, I appreciate your advice to my question. I am doing realatively well on Pentasa, before that it was Sulfasalozine. If I get carried away, my body lets me know, ie the usual symptons raise their ugly heads. When I had the resection last year, the doctors right away wanted to put me on Remicade. I absolutely refused. I do not believe that shutting down the immune system is an answer. Not to mention Remicade and other biologics are not a cure either. I don't see my GI for another three months, but when I do I am going to approach him with the LDN idea and see if he will buy into it. If not I am kind of stuck. All the other GI specialists I have been able to see are biologic enthusiasts. Mean time the other non prescription regiments are something I am also very interested in trying. Any advise in that direction would be great. Maybe I should post the question in another forum? Ok now I am rambling on. Thanks again
Pam
Pam
Kev
Senior Member
When approaching any doctor to try something 'NEW', the best approach is not to appear too desperate (Doc, I will try anything to fix my Crohns... that talk just makes them scared you will try anything.. either in conjunction or apart from their treatment... not the way to go) AND to not take the doctors too far from their 'comfort'zone. If you tell them you ordered a 3 month supply of the Helminth treatment from a 3rd world online pharmacy, and a lifetime supply of the pre-packaged SCD meal plan from Foods Not To Go R Us, AND a 1 year supply of China's Best Herbal Tea, your typical dr will write you off as a loon, and won't be willing to 'gamble' on you as a candidate for 'their' 1st time LDN patient... See the picture. But if you rephrase all of the above as "I'm following a good diet, keeping myself hydrated, and watching the proteins I eat"... then maybe a doc MIGHT be willing to try a new (to him/her) medicine.
Just a thought.. or, at least half a thought.
Just a thought.. or, at least half a thought.
