Low dose naltrexone : Has anyone been given... - PBC Foundation

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Low dose naltrexone

flora profile image
13 Replies

Has anyone been given low dose naltrexone for PBC or any other autoimmune disease. I have been doing a wee bit of reading about it and it seams to be the answer to everything . I have PBC ,SS ,RA ,hashimotos, and depression,LDN has been used to treat all of these. just wondering how anyone got on with this drug.

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flora
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LindyRich profile image
LindyRich

I would be interested in answers to your question. I asked my GI if I could go on it. His reaction was ott.

Which country are you living in?

Lindy

SunnyXXOO profile image
SunnyXXOO in reply toLindyRich

I don’t understand, are you thinking about LDN?

LindyRich profile image
LindyRich in reply toSunnyXXOO

Yes I would like to give it a try. My GI has a closed mind on the subject. He wouldn't even let me explain the minute dosage. I will get it eventually even if it means changing doctor or even hospital.

danaLL profile image
danaLL

My endocrinologist put me on for a little while. She is a huge fan. She thinks that the drug companies don’t make any money off of it, so doctors quit prescribing. I wasn’t on it for long enough to know that made a difference or not. If My recollection is correct, it was originally used to stop the progression of HIV ?

SunnyXXOO profile image
SunnyXXOO in reply todanaLL

Big Pharma are ruthless !!

SunnyXXOO profile image
SunnyXXOO

I’m taking 3mg LDN every evening.

danaLL profile image
danaLL in reply toSunnyXXOO

Has it helped get your numbers down or at least stop them from going up?

SunnyXXOO profile image
SunnyXXOO

Just went for day of testing at Lahey Hospital Burlington, Ma. My Specialist is the director of Liver Transplant unit, he was dumb founded when he saw my numbers. My numbers are the lowest they have been in eons, he can’t figure out why or how I managed to bring them so low with out using Westetn Medicine. Honestly, I not sure what brought them down. Could be my Integrative Physician’s protocol (which includes 3mg LDN) Dr Burt Berkson Las Cruses New Mexico or could be Cannabis Oil. I’m trying to get to the root of the problem and hope to fix it. Every Into Integrative Medicine 100%, I’ve been under Integrative Medicine for a very long time.

SunnyXXOO

kp1234 profile image
kp1234

I take it along with Cholestyramine and Doxepin for itching. Still itch---but it's tolerable. No improvement in my "numbers".

SunnyXXOO profile image
SunnyXXOO

Well, LDN 3-4.5mg is all you need. A Regular GI MD can’t and won’t use Compound Pharmacies, LDN is ordered through Compound.

Joanneconnor profile image
Joanneconnor

I’m going to order some I’ve heard good things, I have pbc and Hashimotos

flora profile image
flora

Thanks to all who answered sorry for not getting back to you all .I actually didn't remember about posting the question and today iI thought I know I'll ask on here. Then came on and found I already had .Going to doctors tomorrow so I'm gonna ask about it. Thanks

Ktltel profile image
Ktltel

Hello, I'm sorry I'm just responding now. I have been off this site for a bit as I had company for most of the summer.

I've been on "low dose" naltrexone for almost a year. I've mostly been stable but my Alk-phos does fluctuate. Low dose naltrexone isn't a cure but an aid. I went off for about a month and noticed a big difference. My overall outlook and general feeling well was affected, as well as my energy level. It went way down. I went back on it and have stayed on it. For it to work its very best, your diet and light exercise comes into play too. I haven't been doing well on my diet 😔 but I can still say I feel better while on it. I do know I've done much better on it in the past when my diet was much better as well. I literally felt normal. You must be sure to purchase it from a reputable compounding pharmacy. I'm in the states. I get mine from Belmar Pharmacy in Colorado. If you have any questions please message me privately.

Stella❤

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