For everyone with Crohn`s.

[Bev707]

I don`t have a question but I would urge everyone suffering with this awful disease to google just two words.  LDN & Crohn`s.  ( OK, three words!).
I belong to a group of  people that all battle with a variety of autoimmune diseases ( my husband has MS) and all of them take LDN.  The main body of the group have MS but there are plenty of people with RA, Fibromyalgia, HIV, and Crohn`s.  ALL of them have had some sucess with taking LDN.  It`s a perfectly legal drug that you get a prescription for but it is used "off label" for all these diseases.  My husband has been in great health for nearly four years since starting LDN.  His MRI`s show no disease progression which is the best you can hope for until a cure is found.  
There is a clinical trial going on at this moment at Penn using LDN and Crohn`s.  If any of you live near there then I think they are still looking for volunteers.
Regardless of that, people are taking it anyway with wonderful results.  LDN can`t harm you as it`s used in a very small dose (the LD stands for "low dose" and the N is for Naltrexone) compared to the original dose of 50mg  which is still used for alcohol/opiate withdrawal.  
We pay a compounding pharmacist under $70 a month for this wonderful drug and it`s just one pill at bedtime.

Please take a moment to do your own investigations. There are many great stories to read on the websites that are uplifting and encouraging. My husband`s neurologist at UCSF has been prescribing LDN for nearly four years so it`s perfectly legal if your doctors are willing to think outside of the box and try something new - and cheap!

Good luck and good health to everyone and thanks for taking the time to read this.

[barneypenny]

anyone had experience using Xifaxan?

[April2]

Yeah, you're not allowed to post emails or websites on here. You can try spelling it out with spaces in between, like www dot business name *******, something like that. :)

Thanks for the info. It looks promising!

[Bev707]

So I guess youre not allowed to post a website name here as it keeps turning into stars!
Just Google LDN and on one of the main websites on the first page you`ll find the yahoo group.

[Bev707]

Sorry - dont know why that didnt go thru.

Go to www.****.*** and scroll down to where it says "join Yahoo group" and it`ll take you to all the info - they really are wonderful people.  Some have been on it for years and some are new and all have stories to tell.
Good luck!

Oh, it`s free to join of course!

[e.r.boy]

Yes ,please do post the site info. Your last post did not come through. Cheers.

[Bev707]

Check out this group for excellent advice and help.

***@****

[Bev707]

I`m so sorry you didnt get any help from the website.  I belong to a LDN Yahoo group so if you check that out I`m sure they`ll point you in the right direction.  I`ll get the website address soon and post it back here.  There are plenty of people taking LDN for various things in Canada. I do understand what you mean and your frustrations.  Don`t just presume that all doctors know everything out there though.  We recently went to a gastro doc here in California as  my husband is having digestive issues which we werent sure were related to his MS or not.  The gastro doctor also had never heard (or claimed not to) of LDN for Crohn`s and the main body of patients he sees are Crohn`s sufferers!  Also my husband`s own neuro still knows nothing about LDN much and they just did a trial at the same hospital!  We still have to tell him how to fill out the script each time!
You have to acknowledge that a lot of this is to do with money and big pharma.  There is no money to be made from promoting LDN as it`s cheap, cheap, cheap.  I`m sure there are plenty of "bonus`s" spread around from doctors prescribing the traditional meds for all the diseases.  Plus the fact they are taking somewhat of a risk for prescribing "off label".  All I can say is, it`s your disease and you should be in control of it.  We did just that with the MS and take great pleasure at the look of our neuro`s face each year when he looks at the MRI`s that show the brain lesions going away and no new ones arriving.  He claims that my husband might have a more benign type of MS and thats fine if it`s true but it also means that thousands of other taking it with sucess also have benign MS too!!
Trust me when I say the ONLY effects my husband has ever had is slight sleep disturbances at the very begininng.  Now I know that Crohn`s is very different but when I say people have had IMMEDIATE positive results with LDN and Crohn`s I am not overstating.
As far as I am concerned if you have been so sick for so long then surely it`s worth giving it a try?  There are always people who want to squash the positives but we are real people with real results.  I had no intention of pushing my husband around in a wheelchair by the 50th birthday and when I investigated the horrible side effects and bad results of the traditional MS meds I knew he would be open to trying anything else first.  
I hope you reconsider and try LDN for awhile.  You can actually get it in a cream if you have trouble absorbing things internally.  It`s so cheap and I would never encourage anyone to try anything that I thought to be dangerous or unhealthy.  On a personal note, I think I have RA and will be starting LDN soon too, with or without my doctor`s OK.  It regulates your immune system and puts your body back into balance.
I`ll post the website here shortly and I know there are people on there with Crohns that will give you more info and give you a list of prescribing doctors in Canana.
Best wishes.
Bev

[e.r.boy]

I tried e-mailing the people on the LDN website with no reply. I wanted to get the name of a gastro. that prescribes it in Canada. My gastro. has never heard of LDN and told me to be wary. He claims he goes to every seminar on crohn's available and they never mention LDN. Also, the website claims it treats  just about every ailment known to mankind. I don't want to be negative but this seems a little too good to be true. I would love the study at Penn to go fabulously, but i've had Crohn's for 20 years now and the drugs are always a failure, either because they don't work or their side effects are ridiculous. Like the biologics. They shut down your immune system well, but you'll get cancer and/or deadly infections, and it'll cost $ 24,0000 per year to use them. Nice job, researchers ! Thats a sustainable solution!