Very Important Research re LDN (low dose naltrexone)

wmonique2 · Post by **wmonique2** » Sun Jul 29, 2018 9:32 am

Hello friends:

There are some 122 studies done on LDN with several covering IBD, IBS and various other gastro issues. Since LDN is an immune system modulator its efficacy covers a host of conditions --- some of them you or your family and friends may suffer from.

Take a look at the enclosed.

https://www.ldnscience.org/research

Love,

Monique

Post by **tex** » Sun Jul 29, 2018 12:44 pm

Thanks for posting this list. There's enough reading there to keep just about anyone busy for a long time.

Love,

Tex

eshuler · Post by **eshuler** » Wed Aug 01, 2018 9:52 am

Hi Monique,

Thanks for posting; I love this site. One of my friends who has fibromyalgia turned me on to LDN. I've just started titrating up and am at the 3mg dose. Although it hasn't stopped all of my GI symptoms, I am feeling a noticeable improvement in my other symptoms (fatigue, joint pain, brain fog). I've seen some of your other posts on LDN and they are very encouraging! I'm hoping with the right supplements along with LDN I can be symptom free! :cool:

Thanks again for posting this!

wmonique2 · Post by **wmonique2** » Wed Aug 01, 2018 10:06 am

Hi Liz,

Glad that it is helping you. I have been in remission for nearly 5 years (with the occasional flare up). It has changed my life. Everything helps: diet, supplements, a bright outlook on life and the support I got from Tex and my friends here made a huge difference along the way. It's all good.

There is an IBD LDN Facebook page as well where there are a lot of Cronies, UC and MC people.

Monique

DebE13 · Post by **DebE13** » Sat Aug 25, 2018 6:28 pm

I've been taking LDN for about three years for pain issues and possible benefits related to having a history of cancer. It hasn't helped with my MC (but nothing really has). It's worth a try.

Anyone entertaining the idea of trying it- do some reading. Many doctors aren't familiar with it as low dose for off label use. If you take thyroid medication you MUST start low and gradually incresae your dose. I did not and had heart palpitation issues that made me think I may end up pushing daiseys. Add an idiot of an endo who refused to get involved and I had a very long lasting, uncomfortable experience with the drug. My body eventually adjusted and all is good now but I learned the hard way which was most certainly not a smart thing to do.

Pebbledash · Post by **Pebbledash** » Fri Jul 03, 2020 7:38 pm

I'm always suspicious of these over the top, salespeople, but perhaps there is some validity in low dose naltrexone?

Just came across this video:

https://articles.mercola.com/sites/arti ... sease.aspx

I'd be interested if anyone has any experience with this med.

Best
Paul

DebE13 · Post by **DebE13** » Sat Jul 04, 2020 3:26 am

Hi Paul, I read the transcript and I agree.... I am also suspicious of anything that seems to good to be true. I've spent thousands of dollars over the years trying anything and everything and I have found no miracle yet. The closest to it is this forum which provides invaluable information as to what may or may not work for you. I have been taking LDN for over seven years and it isn't anything I plan on discontinuing. Check out this group. Another good source of information.

http://www.ldninfo.org/

LDN has not been the miracle drug for me that some people have experienced. Some of the stories do seem to good to be true and I am a tad bit jealous because I have not found that to be true in my case but is has helped with my chronic pain. I'd like to think it is helping with keeping my immune system in check too. I have CC- it has not changed my condition at all. I continue with WD in the mornings 4-6x/day and have tried every drug possible and many of them actually made me feel worse. I continue with 1 Entocort daily and 2 if there seems to be a flare. For years I tried getting off of it because I don't like the idea of taking any medications but things get worse when I don't take it. The Entocort manages nocturnal D issues so is well worth it. I remain GF and SF and am very careful with what I eat. I also had thyroid cancer in 2013 and found out I had Hashimotos after my thryoid was removed. I have been taking Armour thyroid meds for years now and am still working on optimal numbers. There are other autoimmune issues that have not been pin-pointed and I have stopped trying to put a name on them. Labels like fibromyalgia and chronic pain syndrome have been tossed around. I've also had Lymes disease.

I am not willing to stop LDN to see if any issues become worse but I can't really say with absolute confidence that it is helping at all. From what I've read, it is worth taking. My recommendation would be to read all you can on it since many doctors are not familiar with it and try it.

Pebbledash · Post by **Pebbledash** » Wed Oct 28, 2020 12:08 pm

Bumping this. Realized I came across this thread before and brushed it off!! Embarrassing! I've asked my GI if I can try this treatment.

Cheers
Paul

Pebbledash · Post by **Pebbledash** » Fri Oct 30, 2020 7:59 pm

Hi all,

My GI is skeptical and, before she will prescribe LDN, has asked me for research that demonstrates efficacy outweighs any side effects.

I was planning to provide the link Monique provided above, as well as this 2018 peer reviewed paper that found "clinical improvement in 74.5%, and remission in 25.5% of patients" with refractory IBD:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5845217/

(It might well be referenced in Monique's link--haven't checked yet).

If anyone knows of another (recent) article that will bedazzle my GI, I would be very grateful if you could pass it my way!

Cheers
Paul[/url]

Post by **tex** » Fri Oct 30, 2020 8:15 pm

Paul,

In the past, if you called Skip's Pharmacy, I'm thinking they had a doctor available to write the prescription, and then they sent the compounded product by mail. They probably still do. If so, that sounds like a much easier way to get the product.

Tex

Pebbledash · Post by **Pebbledash** » Fri Oct 30, 2020 10:23 pm

Oh, thanks, Tex. It's good to know that there might be a back-up if I cannot get it through my GI. I definitely want to at least give this a try!

Cheers
Paul

Pebbledash · Post by **Pebbledash** » Sat Oct 31, 2020 2:01 pm

Sorry, more questions!

Most people seem to take capsules. How do they arrange to get two different doses--1.5mg for the first week or so, then 4.5mg thereafter, perhaps returning to 1.5mg if they are getting capsules made up at a compounding pharmacist? Is this variety something one can ask for when ordering?

Would it not be better to use the liquid form I've seen mentioned on websites which might allow for more flexible dosing?

Do compounding pharmacists take the 50mg capsules, open each and every one and pour them into the smaller amounts?

I've read NOT to have gradual-release shells--anything else I should know in case I order?

Thanks so much,
Paul

Post by **tex** » Sat Oct 31, 2020 7:30 pm

I know very little about LDN use, but as far as dosing is concerned, if you start with 1.5 mg, you can easily double or triple the dose by taking 2 or 3 capsules.

Compounding pharmacies probably buy the stuff in bulk

LDN functions similar to corticosteroids, you get maximum benefit by taking the daily dose all at one time, so as to "shock", or "reset" the system.

Tex

Pebbledash · Post by **Pebbledash** » Sat Oct 31, 2020 7:40 pm

Cheers, Tex :cool:

Pebbledash · Post by **Pebbledash** » Sun Nov 01, 2020 2:33 am

Hi Tex,

Just wondering . . .

I've read a few accounts here of members trying LDN. At least one, Monique, is adamant that it changed her life; I have read a few others who are adamant that it did nothing to them.

Do you have a rough idea of how many members have tried it? And, of those, how many found it effective versus how many found it worthless?

Cheers
Paul