Low dose naltrexone-- MS miracle drug?

[MandaPanda2888]

So, I started taking rebif recently and today was my first day on a full dose and I feel like I have been HIT by a TRUCK. I can't even begin to detail how crappy I feel. I've been lOoking for an MS specialist that my insurance covers but have had no luck. I live in a small Indianapolis suburb and have had problems with a lot of my drs. I don't dislike my neuro but I don't feel like he knows much specifically about my disease. Now, I have been doing my own research and have finally stumbled upon the miracle stories of LDN. How do I get perscribed this in the us? Is it worth trying? Anyone here on it? Any information on the drug would be most appreciated. So tired of feeling like this. I try so hard not to. But I'm so tired and so weak and my leg pain is getting so bad that it just makes my entire life suck. :/ anyone have any info on ldn? Thank you.

[tellnhelen]

I'm sooo sorry you are feeling bad. I'm sorry too that you aren't satisfied with your docs. Hope it gets better for you soon.

I tried LDN for a while. I'm not one of those miracle stories. Unfortunately I no longer have the web address but there is a list of doctors that do prescribe LDN on the web. My LDN doctors was in PA. My pharmacy was in FLA. after a few months I lost confidence the it was really working...went to Tysabri. Don't let feeling bad make you give up. Check with pharmacy onhow you might take the Rebif without so many sides.

Good luck

[Tawanda]

I feel your anguish about M.S. I recall my first year after diagnosis was one of desperation. I refer to it as, "The Lost Year". Originally I tried EVERYTHING, including LDN. I don't think I was realistic, expecting everything I tried to be a "miracle drug" whereas no such thing exists or we would all be taking it.

I doubt there is anyone out there who hates this disease as much as I do, but even I have carved out a life that is a lot better than I imagined it would be (after the initial shell-shock of my diagnosis, of course).

[MandaPanda2888]

Thanks!

It's not so much that I am shocked or in despair because I was dxd I'm just so tired of the pain and weakness. Sometimes I can hardly even make a fist and apply pressure to it. Im also 24 and have a very active 2 yr old boy and I just feel like I haven't been there enough. My gf does WVERYTHING with him because I'm too tired or too just with schoolwork. I feel like I'm missing out because it's hard for me to even keep up with him at the park especially when it's hot outside. I guess I just hope to find something that not only helps to keep the disease from progressing but also helps me FEEL better. I hate shots. Forreal I can't stand them. Lol

[MarkLavelle]

How do I get perscribed this in the us? Is it worth trying?

This thread should answer your LDN questions (or at least provide links to answers):
http://msworld.org/forum/showthread.php?t=115804

[JerryD]

I can tell you that LDN comes from a compounding pharmacy. It was first compounded for an MS patient in New York City . My insurance company will not cover it, so I pay cash and it's relatively cheap. Like $80 for 90 tablets (90 day supply).
You can find a lot of info on LDN on this site. I found my doctor and LDN info on a site that was titled something like LDNer's. It isn't a miracle drug. It seems to help me sleep better.
I hope you get some relief with the drugs you are taking. And you need to contact the local MSAA neurologists in your area. Good luck

[gresh3]

Try this

*URL* has loads of info on LDN. great group of people there too.

I go and have gone to an MS specialist for years. She has been of little help, just passes out meds & tries to get you to do trials.

I have learned more from MS boards and reading. She is very nice, but cx the last 8 of my apps & I am &was in a bad exacerbation. She was sympathetic when I finally saw her, but rx $ 20000.00 steroid meds and gave baclofen. I am still
where I have been for months.

**URL removed by Moderator in compliance with MSWorld Guidelines. This may be put in your Profile for all registered, logged-in members to see. Go to UserCP > Edit Details**

[knuckle]

On the Medications Forum there is a sticky, "Useful LDN Information".

As for LDN user experiences from by both doctors and patients I strongly suggest a YouTube Channel which is supported by www.LDNaware.org and www.LDNresearchtrust.org - a UK based charity.

http://www.youtube.com/user/TheLDNresearchtrust

To date there are 151 interviews of people taking LDN for MS, which should help you become more informed about this "miracle" drug (which I think is ridiculous and a disservice to it's usefulness).

[MandaPanda2888]

Thanks everyone!

For all yOur input and advice not only on ldn but with my issues with my neuro. All of it can be a bit overwhelming and a bit frustrating at times.

[MandaPanda2888]

...

Just used the term "miracle drug" to draw people in to answer. I know there's not really a "miracle drug" out there.

[Sara Angela]

I'm on LDN. I do think it has helped a lot with my pain! It helps me with my bladder problems.

I do the homemade version of LDN. I mix 50mg Natrexone tablet in 50ml distilled water. I then draw up the 4.5ml I take now.

There is a LDN proboard, that is very helpful. Google it and it should come up.

Sara

[lemstar]

Also, be awaree that taking LDN and Rebif at the same time is generally not suggested. You may be able to back down to the 22mg of Rebif instead of the full dose too....

I was on Rebif, and am not on anything now. I feel so much better. But my case is a bit different....I think...

Never tried LDN.

[MandaPanda2888]

Rebif

I have heard from a lot of people they were on rebif for years and years and then went off it and never felt better. I know so many people who balance thier ms in different ways and don't need drugs. I've never felt worse then I do now. Right now I just took my shot about 7 hours ago and feel crappy. I even have a fever took Tylenol but didn't seem to help.

[Jules A]

Just used the term "miracle drug" to draw people in to answer. I know there's not really a "miracle drug" out there.

Excellent strategy I bet you got way more answers than if you hadn't used that statement.

Personally I'd keep trying to find a ABCR that is tolerable in hopes of fighting MS. Good luck.

[Tawanda]

Excellent strategy I bet you got way more answers than if you hadn't used that statement.

Personally I'd keep trying to find a ABCR that is tolerable in hopes of fighting MS. Good luck.

I have to agree. "Miracle Drug" definitely spikes responses around here. It provokes anger, pity or even a slight shred of hope for anyone who sees it. Luckily the title included LDN, which most of have heard of or tried, so we already had an opinion so we didn't get too excited!