Low Dose Naltrexone

hoosier1 · Post by **hoosier1** » Sun Apr 13, 2014 2:45 pm

LDN for short is getting a lot of positive talk on the Chrons and UC boards. Any thoughts from this group on its efficacy for us? I may allow myself to be a guinea pig again.

Gabes-Apg · Post by **Gabes-Apg** » Sun Apr 13, 2014 2:53 pm

Hey Rich
I havent used LDN, based on the current people on this forum trying it/using it

D type MC some/most are having great results
C type MC - it is early days, first week of using it, no success yet.

the sucky part of MC applies, what works for one, may not work for another..

my tweaked protocol is showing improvements already.... in line with the very interesting discussion about Vit D, VDR and Mast Cells etc.
focus is on reducing inflammation /mast cell /histamine rather than blocking it totally.

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JLH · Post by **JLH** » Sun Apr 13, 2014 2:58 pm

Sent a PM.

hoosier1 · Post by **hoosier1** » Sun Apr 13, 2014 3:23 pm

Gabes-Apg wrote:Hey Rich
I havent used LDN, based on the current people on this forum trying it/using it

D type MC some/most are having great results
C type MC - it is early days, first week of using it, no success yet.

the sucky part of MC applies, what works for one, may not work for another..

my tweaked protocol is showing improvements already.... in line with the very interesting discussion about Vit D, VDR and Mast Cells etc.
focus is on reducing inflammation /mast cell /histamine rather than blocking it totally.

[/i]

Hi Gabes,

Glad you are seeing progress. You are clearly focused and deserve to experience the fruits of your labor. My friend, who is a doctor, is at conference in Tampa right now and he called me to discuss LDN after leaving a seminar. Put me in coach. I am willing to try. Pretty sure my pelvic floor dysfunction is still a major contributor to my problems as well - and it is getting worse. Considering a 2 week immersion at the Mayo Clinic where they teach you to rehab your pelvic floor via PT. Hard to get into, of course very expensive, but probably makes the most sense for me. I feel like I have to hit this from multiple angles.

Gabes-Apg · Post by **Gabes-Apg** » Sun Apr 13, 2014 3:34 pm

Hit this from multiple angles

Good thinking!

Make sure your Vit D levels are at a good level.

Since increasing the Magnesium and Zinc just over a week ago, i havent had to use antihistamines. (havent even introduced the Vit C yet)
Lactulose is going well (better than the parraffin i used for the past couple of years)
the DigestEasy (ginger based tonic to aid digestion of proteins that cause food intolerance)

maybe the fact that I am not working and having less stress is helping.

Had my pelvic floor checked last week, and it was pretty good.
Removing the inflammation and calming the immune system is my main goal.

Pat · Post by **Pat** » Sun Apr 13, 2014 4:00 pm

Rich,

I am taking LDN, 4.5mg. Been on it since the end of Feb. Started at 3mg and at one month transitioned to 4.5. I haven't noticed any improvement from 3 to 4.5 but I did have improvement initially. No more Imodium and no more nocturnal BMs, BUT I am following an extremely strict diet. Turkey, catfish, peeled over cooked zucchini, rice, olive oil, and sea salt. Tried to add Salmon, no go. Tried to add spinach, no go. Tried to add yellow squash, no go. I am not having normans with my diet either. I think I am intolerant to everything. Monique, Zizzle and Lesley are also taking it. Maybe they will chime in soon. I really haven't had side effects either.

Pat

LindyLou · Post by **LindyLou** » Sun Apr 13, 2014 5:18 pm

Just started LDN 2 nights ago. Due to also having Hashi's, I'm starting out at 1.5 Mg's. Had a sit down talk with the compounding pharmacist before he filled the script and he made it as hypoallergenic a humanly possible. I will stay at this level for 4 weeks before bumping the dose up. I will be going in every 3 weeks for thyroid labs to make sure I don't go hyper. I have read that can happen pretty easily if you start out on too high of a dose. No noticeable difference yet but keeping my fingers crossed.

CathyMe. · Post by **CathyMe.** » Mon Apr 14, 2014 4:58 am

I too have been researching LDN like crazy and have an appointment this morning with my PCP where I will discuss using it to decrease my inflammation. I will let you all know what her thoughts are. She's been very open to my ideas in the past, signed off on MRT testing so that my insurance would pay for it, among other things.

Zizzle · Post by **Zizzle** » Mon Apr 14, 2014 6:53 am

Hi Rich!
I've been on LDN primarily for my Dermatomyositis skin rash for 2 months. It improved the rash 30% pretty quickly and I've been able to speed up all my med tapers (prednisone, Plaquenil). I was doing well MC-wise due to the strict autoimmune paleo diet I was on, but I've been able to reintroduce nuts, nightshade spices, baked eggs, and seeds with no trouble. Overall my reactions to foods are much milder/slower. I also have good energy. I started at 2.25 mgs for 10 days, then doubled to 4.5.

JLH · Post by **JLH** » Mon Apr 14, 2014 8:12 am

Glad to hear that Z, I was a bit depressed by Pat's post.

mzh · Post by **mzh** » Wed Apr 16, 2014 7:05 pm

I've been on LDN for almost 4 weeks. I'm trying to get rid of aches and pains. Still have them but I can get moving sooner in the AM even if I'm 75% still asleep. LOL I will persevere and continue. I have had zero side effects.

wmonique2 · Post by **wmonique2** » Fri Apr 18, 2014 4:30 am

Do it.

The best thing I have ever done. A miracle drug for me. The worst thing that can happen is that it doesn't work for you or that it works marginally.

Monique

CathyMe. · Post by **CathyMe.** » Tue May 06, 2014 8:34 am

I am bumping this back up in the hopes that folks can update on how things are going with LDN here. I just took my first dose (only 1.5 mg) last night and I definitely got a noticeable increase in my energy level this morning! I have my D under control but was really looking for an increase in my energy level and a decrease in aches and pains. We will see if that happens and hopefully this will continue. I did not have any noticeable changes to my sleep either, which was one of my concerns and why I started with a lower dose.

mzh · Post by **mzh** » Tue May 06, 2014 9:08 am

I've been on LDN (4.5 mg) for about 6 weeks. I am much more energetic on it. My bowels were normal before I started it (after 9 years of being on very low doses of Entocort as of late. (3 mg every other week)

I still have aches and pains from arthritis but I intend to stay on it. I get mine from Israel. It's pricey so I may try another source. No prescription needed if you get it overseas.

CathyMe. · Post by **CathyMe.** » Tue May 06, 2014 9:20 am

mzh wrote:I've been on LDN (4.5 mg) for about 6 weeks. I am much more energetic on it. My bowels were normal before I started it (after 9 years of being on very low doses of Entocort as of late. (3 mg every other week)

I still have aches and pains from arthritis but I intend to stay on it. I get mine from Israel. It's pricey so I may try another source. No prescription needed if you get it overseas.

Great to hear. I got mine from ADC, very reasonable and very easy for me to dilute it!

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Low Dose Naltrexone - Getting a lot of positive talk

Low Dose Naltrexone - Getting a lot of positive talk