LDN (low dose naltrexone) - it works!

     That's wonderful news!!!!  Hope you continue to feel well.  My GI doctor never mentioned LDN to me.  Guess he wouldn't be making any money off it.  I have come to realize, unfortunately kinda late, that if it didn't put a buck in his pocket, he wasn't interested in suggesting it to me .  He completely poo pooed fecal transplantation and any type of probiotic.  I did take a probiotic (Powerdolphilus) but it didn't help.

     Well, now he isn't making any money off me because I have no colon.  He was NOT a happy camper when I told him I was having the operation...too bad for him.  My hubby had a colonoscopy yesterday (his colon is beautiful ) but he went to a different GI doctor than the one I used to go to.

Max89 - the bottom line is you have to do what's right for you, and if you feel LDN is right, then too bad for your doctor (sorry to be so blunt).

deltaforce - sorry about the font size, when I have alot of info to post, I try to use 8 point font so it won't take so much space, didn't realize it would be a problem, next time will post in larger font. Now, as to my signature, I have no idea how to make that smaller font?

@LoLil - Welcome to the forum!
When you say the LDN put you in remission, how much did it reduce your BMs? I'm still trying to figure out how to know what remission is. Do you continue with your other prescribed medicines? And will you still follow diets or start introducing stuff you avoided before?

Before going on SCD diet and doing my supplements, etc... besides the major bleeding, I used to have probably 10-15 BMs a day, lots of urgency, cramping, D, pain - heck, some days I couldn't even leave the house. After I went on SCD and slippery elm powder, etc... my BMs went down to probably around 4-5 a day BUT still bleeding, lots of it. After I started the LDN, as I mentioned the bleeding stopped entirely, and no more cramping, urgency, no pain, no D, and I now probably go about 1-2 times daily. I'm still on a strict diet (modified Paleo - no dairy, no wheat, no gluten, no HFCS, lots of grass-fed animal products, salads and veggies, some fruits and nuts), still on all my supplements, probiotics, and LDN, but am NOT on any prescribed meds ( although 5asa did not agree with me, I used to tolerate the canasa suppositories, although it didn't do much). As far as diet, I've found out it's key to keeping the inflammation down. Do I cheat? Yes, occasionally, if I do I make sure to take my slippery elm powder + probiotics, both before and after the "cheat". But long term, I KNOW I have to stay on this diet.

Welcome to the forum.

I'm so glad you've found us.

I'm hoping when I ask about it for me, he will be open to it. Do I want to 'work' on getting better gut flora before I try LDN? At the same time? If there are other threads about LDN how do I find them please.

Yes, I hope he'll prescribe it for you as well. You may want to show him the Dr. Jill Smith studies from Penn State, and don't be shy - be insistent if you have to.

I don't think having better gut flora is a requirement for LDN, however it certainly wouldn't hurt, regardless of whether you get on LDN or not.

There are other things you could do as well: diet modification, certain supplements which will help with colonic repair. For more info on these things and the protocol which has put me into remission, please go to this link: https://www.healingwell.com/community/default.aspx?f=38&m=1666318 , and look at the 11th post.

As far as LDN threads, you can do a search under my name, InSoFla - and you'll probably find quite a few with informational links as well.

Let me know how else I can be of help to you.

thanks for posting this insofla:

I really want to try LDN. 

I have a list of prescribing doctors from crystal, but none are near me.  I called Skips and they said there is a dr in phila. (not far) and someone that does phone consults in NY (i'm in south jersey)

I have my gi appt June 1, I guess i will ask her first  ask my regular gi dr then maybe try to get the rx from somewhere else.

should i bring in anything to my gi dr, any studies? the one from Penn state?

Has anyone done a phone consult? what is the cost?

seasons21, thanks for your reply.  Money is an issue so i will try to find someone within my insurance network.  My primary dr is an integrated dr, they do biopuncture (?) i think its called and prescribe homeopathic medicine.  Since I am never sick except uc, i think ive been to them one time in like 3 years.

but maybe going to them for the rx is worth a shot.

so what did you do, call around and ask first, "will you prescribe ldn? " or did you just go in and ask?  Did you bring any studies? Did they know how to write the rx?  and most importantly did it help your uc?

thanks@!

thanks seasons this is great information.

I have never done imuran or 6mp. so far I have just used pred, lialda, entocort, rowasa, hydrocort enemas and now proctofoam.

My gi was considering imuran for me based on my symptoms (4 year pancolitis flare that is slowwwwwwwly improving) but after my colonoscopy in feb where there was just a 4 inch isolated patch of moderate inflammation in my rectosigmoid, she wasnted to try and treat it rectally.  i had already been on rowasa so she switched it up to hydrocort enemas, no luck, then i got involved in a study for budesonide foam and got booted out (long story, i posted it a few weeks ago). now i am trying proctafoam and getting worse.

if i were you i would take the imuran, i think its seems to help those that use it.... 

I would suggest you show your doc the Dr. Jill Smith studies from Penn State and tell him you really want to try LDN.

If you don't get anywhere with your regular GI or PCP, then you'll have to find someone who will prescribe it for you - and Skip's can help with that.

Let me know how else I can help you.