further on LDN

[Betzizi]

Oops -- I got up this morning and decided to write about Low Dose Naltrexone (LDN) on this discussion group, so just jumped onto the site and started writing.  I see there's already a big ol' discussion going on with people with first hand experience.  GREAT.  I noted that one person said her doctor reporte that there is no info on LDN at conferences yet.  Probably the reason is that the studies are still few and most importantly, the drug is "off-patent" at this point, so there is no huge drug company ready to pour tens of millions of dollars into researching this. You can bet it'd be different if a company still held an exclusive patent.  Wish I could recall where I saw those beautiful before and after pictures.  Think it was a basic LDN website.  Best wishes in checking this out per your enthusiastic fellow Crohn's patients.

[Bev707]

Actually, there is an annual LDN conference.  Not specifically for Crohn`s but it`s certainly included in the reports and discussions.
This year it`s being held on October 11th in LA - each year someplace else to allow everyone on both coasts and the middle to try to get there.  Luckily for us, we live in San Francisco so can make it down to LA this year.
I`m in no doubt that the lack of info is all about money - it is a crime.  Thats why people like my husband and I do what we can to spread the word because you can be sure most doctors will not and in fact quite often do the opposite and give terrible mis-information and try to scare people off it.  
There are so many meds that are used "off label" so it`s not just that, but the fact that it`s actually affordable unlike most other meds!   Unfortunately there are a lot of people that just will not do anything their doctors dont agree with but my attitude is that  you are the patient and they are there to guide you.  If you are getting sicker and sicker (in the case of MS sufferers, being in wheelchairs) then it`s time to look elsewhere.  If there are thousands of people all taking one drug and reporting great results then you have nothing more to lose by getting the info.  
Good luck to anyone and everyone who is prepared to go on the journey to do something to improve their quality of life.

[e.r.boy]

I think its a crime that profitability gets in the way of progress. Anything health related should be not-for-profit, worldwide.  What cracks me up is with all the ineffective drugs we have, there is always two or three competitors who make the same stuff ! Being ill with Crohn's or other autoimmune diseases is a lifetime of pain. Any decent sustainable treatment would make a huge difference in the quality of life for millions of people. I am middle aged now and wonder if I will ever have energy or feel well. I've had Crohn's for 20 of those years and for decades and decades they've been researching this disease. This is the frustrating part!  If airplanes were falling out of the sky every day, do you think it would take decades to solve the problem ? Even today they are not sure if its an overactive or underactive immune system, a pathogen or whatever. I truly question the competence of our research system. Thank you for listening to my venting.