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When Low Dose Naltrexone treatment does not work!

I am a newcomer to this forum, so I have been unable to read all of the posts yet, so please bear with me if this subject has already been addressed.

Within a couple of weeks, I will start taking LDN in hopes of it along with diet to put my CD in remission. After a more detailed reading of the http://www.lowdosenaltrexone.org website, I wonder how many people who have tried LDN and found it not to work had actually received LDN that was compounded incorrectly with a slow- release form of LDN and/or the filler was calcium carbonate which interferes with the absorption of LDN.
 

Crohn's 35

Inactive Account
Welcome Idahogirl, there are a few who are on here who use LDN... perhaps you can tell us your full story so we know how we can help you. How long have you had Crohns and where is it located?
 
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PhotoMom6984

Guest
On LDN for 3weeks and have had Crohn for 10yrs.

Hello, I am new to this website and have started LDN for 3weeks so far. I have had Crohns Disease for 10yrs and have had no surgerys as many have. I have been on so many meds the last being Remicade which ended after a year of infusions ending in a severe reaction. Have moved around the country due to my husbands job and now am residing on the West Coast. Was treated for the last 5yrs in a large research center in LA and my Dr. was not happy w my choice of LDN. He wanted me to go w newer Biologic eg Humira etc. After much debate he reluctantly wrote the script and I am off Entocort and only on LDN 4.5mg at night. I am very hopeful that this is going to work but know must stay in the day. I have had no side effects at all being on LDN. Would like to connect w others who have been on this course of treatment which really is against the masses. The majority of treatments are to suppress the immune system and this works to encourage immune system. I am grateful for Dr Jill Smith research and hope her present research continues.
 

imisspopcorn

Punctuation Impaired
Welcome PhotoMom...We are all interested in the success and research of this drug....If you get a chance please post in the "My Story' section of the forum. You will probably get more responses from other LDN users. Good luck. Have you noticed any improvement yet?
 

Kev

Senior Member
Hi Idahogirl

I've been on LDN for over 2 years... It was slow to kick in (roughest part of going this route is waiting to find out if it is going to work for you), but it eventually did, and it changed my life... I guess you could call it remission, but I prefer to think of it more like insulin to a diabetic... no miracle cure, but it lets you live a pretty normal life. I have had downturns, esp after a bad cold or flu, but I keep taking it, and things have always come around.. I have a top notch local pharmacy that compounds it for me (thanx to my GI, she convinced them) and they follow Dr Smiths protocols. I heard that conditions like candida can prevent LDN from working, and the website you quoted lists various options one can try to maximize your chances of success. Others have combined LDN & the SCD... I looked at the SCD, considered it too rigid for me to live with, and luckily the LDN worked for me without resorting to measures like that. All the best to you, good luck with the LDN, and be sure to tell us more about yourself
 
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PhotoMom6984

Guest
Hi Imisspopcorn,
Well its been 3 weeks on LDN. Am off Entocort and am feeling alittle uncomfortable but not to the extent that I cannot function. Am thinking that LDN probably a gradual shift then one huge leap. My new GI Doc has just put me on B12 self inject every month to start tomorrow because of the location of my disease since last Colonoscopy in Nov. 09. Am hoping this helps w my energy level which is always a battle despite my multivit, probiotics and SCD diet. Have you found B12 to help w your energy etc?
 
Ldn

imisspopcorn said:
Welcome PhotoMom...We are all interested in the success and research of this drug....If you get a chance please post in the "My Story' section of the forum. You will probably get more responses from other LDN users. Good luck. Have you noticed any improvement yet?

Have you had success? I don't see an update? This LDN looks very hopeful... Sue
 
My husband started LDN 3 weeks ago. For 2 weeks he took it and got worse. We came to find out that the pharm compounded it with LACTOSE! Apparently this is very common so be careful. He is having a severe flare because of it. We got him new LDN now compounded with acidopholis. Trying to be patient, but he's losing hope. I hope he can stick it out. It's been 7 agonizing years with no relief.
 
I would really recommend Skip's Pharmacy for LDN. I started LDN in November of
'08, it started kicking in nicely sometime around Jan/Feb of '09. I haven't seen any blood in my now normal, once or twice daily BM for about a year. LDN, just like any other drug, does not work for everyone but I am so thankful I made this decision and it has worked so well for me. I think most see a difference somewhere between two and four months but sometimes longer.

Good luck and take care,

Miss
 
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