Experiences of LDN

LR1234 · Post by **LR1234** » Mon Mar 16, 2009 9:57 am

HI, I am looking through all the available treatment options from Abx to antivirals, DMD's and LDN. I hope to make a decision very soon

I want to try and find out what the experiences are of people taking LDN specifically to progression. I have RRMS and understand that LDN boosts the immune system rather than suppressing it. I want to find out if people are really progressing less on LDN and having less relapses.

THanks

DIM · Post by **DIM** » Mon Mar 16, 2009 11:55 am

www.remedyfind.com and search with the terms RRMS kai low dose naltrexone.
You can find also experiences posted at: http://ldn.proboards3.com/index.cgi?

Annecat · Post by **Annecat** » Mon Mar 16, 2009 12:11 pm

Hi there,
It is my understanding that LDN does not so much "boost" the immune system as it regulates it. (which is ,very simply put, the premise for why it works....it keeps the overzealousness of the immune system in check.
I am only learning about it myself but from what I have read the idea that it boosts the immune system is not entirely accurate.
I have some saved info on my actual PC which is sadly now in the repair shop and unwisely I did not back up my files....If I get it back I will gladly forward you what I have. Unfortunately it looks more like I will be restarting my search and recollecting info. Live and learn.

LR1234 · Post by **LR1234** » Mon Mar 16, 2009 1:39 pm

Thanks for your responses. Anne you are right it does regulate as opposed to stimulate/boost.

I am going to give LDN a go.

Sharon · Post by **Sharon** » Tue Mar 17, 2009 6:21 pm

Look at the following website - this is a new database with anecdotal stories of MS'rs use of LDN - I think there are over a 100 stories

http://www.ldn-database.carnebeach.com

Sharon

LR1234 · Post by **LR1234** » Sun Mar 22, 2009 2:45 pm

Thanks Sharon.

I might start a different thread for this question but has anyone had MRI scans before and after taking LDN? There is a lot of anecdotal benefits of taking LDN but I am interested in hearing if it has made a difference to the MRI's and lesion formation.

Sharon · Post by **Sharon** » Sun Mar 22, 2009 3:10 pm

Yes, I have had MRI's before and after. I was diagnosed in 2003 - have had an MRI each year. I have had no change in my MRI results before and after LDN. My MRI has never showed active lesions or inflammation.
I have been on LDN since May of 2008

Sharon

LarryLDN · Post by **LarryLDN** » Tue Mar 24, 2009 12:16 am

http://www.larrygc.com/mystory

All my MRI results over 6 years are in one post on the above link thread

It's on page 3 of the thread, post #23 (link)

LR1234 · Post by **LR1234** » Tue Mar 24, 2009 1:47 am

Cool Larry, looks like LDN is helping with the lesions etc.

I read your entry about cocoa and chocolate, I also have a major reaction when I eat chocolate which is a bummer cause I love chocolate!!!!

LarryLDN · Post by **LarryLDN** » Tue Mar 24, 2009 1:55 am

who doesn't love chocolate?

the last food allergy testing shows I'm not 'allergic' to chocolate any more

I eat it every now and then, still get telltale symptoms from it, but it doesn't turn into an attack any more. I think dark chocolate may trigger vertigo. I said some day I'd test that again, maybe it's the right time too

DIM · Post by **DIM** » Thu Mar 26, 2009 1:37 am

Wife is also on LDN two years now and has same problems with chocolate, she was mild allergic to it but now she eats from time to time a piece of dark (>70%) chocolate, unfortunately last time she has had bad reaction to it although she loves chocolate (as 100% of people)!

Fortunately the mild stiffness from chocolate was temporary!

Bubba · Post by **Bubba** » Thu Mar 26, 2009 9:06 am

I asked my neuro about it and insisted to him that I was Very interested in it. He said, "They dont make it yet"? He wouldnt even entertain anymore talk about it..

Sharon · Post by **Sharon** » Thu Mar 26, 2009 9:21 am

Bubba -

Doesn't that just make you mad?

You know more than your neuro!!

skydog · Post by **skydog** » Thu Mar 26, 2009 4:49 pm

I tried LDN almost two years ago for three months. Wasn't sure if it was doing that much then but looking back from where I am right now I would be willing to try again. Kinda searching for a place to start over since not doing so great at the moment. Numb hands and not much use of the legs... Crashed and burned lately. Peace Mark

LR1234 · Post by **LR1234** » Fri Mar 27, 2009 1:45 am

Hey Mark,
Are you on any special diet i.e the BBD and supplements? (just a thought as I know that when I came off my diet I crashed bigtime)

L x