Announcement

**Reggie** · 20-Mar-2012, 09:54

I've been using the drop as a part of the pain study at the BFS since November and I can honestly say I've felt no benefits at all. As soon as this bottle is finished I'm done with it. Don't know much about the pill though.

**jenny2008** · 20-Mar-2012, 11:50

thanks Reggie for your reply.. I wish we would get more responses... i have tried so many drops-everything out there... hopefully soomthing will come out new to help us all. i have faith it will.
btw. your dog is super cute

**y-gwair** · 20-Mar-2012, 12:01

Probably because not many doctors know much about the mechanisms involved with autoimmune dry eye (or mouth) and the autonomic nervous system problems that lie behind it. People with dysautonomia/POTS are using it and finding it helps, probably because it is helping neurotransmission. I'd only come across it in this context, interesting to hear that it might help with sicca. Wouldn't think drops would be much use, needs to work on a systemic level.

LDN thread on DINET board

**PotatoCakes** · 20-Mar-2012, 13:39

I did a fair amount of online research on it and spoke to 2 of my physicians and 1 naturopath about it. Most/all of the research I found in support of it was anecdotal and none of it scientific / research based (I personally don't consider http://www.lowdosenaltrexone.org/ scientific and none of the claims I found on the site proved to be either, but that's just my opinion). I also asked some friends who are involved with various types of research for autoimmune diseases, including someone who has been involved internationally with HIV issues and none of them had even heard of its use, let alone heard of successes. I asked them to look into it for me and none found anything leading them to believe LDN had any merit.

While none of my physicians seemed overly enthusiastic about it, none of them had a problem with me trying it either. My naturopath went ahead and prescribed it for me and after being on it for a while, I found no reason to continue since it didn't seem to be impacting my eye issues, or anything else for that matter.

Like you, I questioned that if it was such a miracle drug, why weren't we hearing more about it. I also wonder, why a pharmaceutical company would ignore such a large potentially very profitable market if it really does work. Drug companies & their shareholders love when one drug can address many things and it's not something they will ignore. If you manufactured Naltrexone, wouldn't you be doing trials and more to put it out there to a potentially massive market? I know I would.

That said, there are some people it seems to work for. Is it psychosomatic? Is it real? Does it matter if you're one of the people it works for? IMO, if you find something that works for you, then keep doing it.

**spmcc** · 20-Mar-2012, 13:59

Prior to finding DEZ, I followed www.lowdosenaltrexone.org and used LDN for 4-5 months (oral, not drops).

It did nothing for me (dx: rosacea, ocular rosacea, joint pain).

Unfortunately, I'm very skeptical when something claims to cure *everything*. But I tried it anyway.

**jenny2008** · 20-Mar-2012, 17:11

thank you to both of you for responding as well. i will keep everyone posted if my doc will prescribe it... he is researching it now for me.. who knows... i wonder too as it sounds 'too good to be true'.

**fiddle** · 20-Mar-2012, 18:03

Hi jenny2008,
Just a note from a fellow sjogrens patient, but the other website that I have found of great use and resources is,
sjogrensworldforum.
That is where I found this site and there are so many stories on that site and support too. If you have questions about drugs and such there is a wealth of info from patients who have tried them and their stories.
Hope that helps some, it did for me,
fiddle

Announcement

if Low dose naltrexone is so great for dry eye-why arent more of us on it?

if Low dose naltrexone is so great for dry eye-why arent more of us on it?

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