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-   -   LDN Information & Check In (https://www.neurotalk.org/multiple-sclerosis/50240-ldn-information-check.html)

SallyC 07-18-2008 11:01 AM

LDN Information & Check In
 
This is an interesting blog from a Writer with MS, who discovered LDN. Dr. Gluck of the LDN. org, wrote a comment, as well.

http://sclerotics.wordpress.com/2008/07/16/27-miracle-cure/

Kitty 07-18-2008 11:24 AM

Thanks, Sally. I've been asking my Neuro to prescribe LDN for me but he refuses to do so. I even asked him to just let me try it for a few months - if it didn't help then I would not ask for more. No luck.....:rolleyes:

How long have you been on it? Which of your symptoms did you notice improvement in? How long did it take for you to notice those improvements?

How can I get a script for it? Do I have to go through an on-line pharmacy to get it?

Sorry for all the questions.....it's just that this article was really informative and I would at least like to try it.

SallyC 07-18-2008 01:01 PM

Kelly, I PMed you some info.:)

I know I've said this 100 times, so, log off, if you don't want to hear it again..:D

I started on LDN in April of 2003 and the very first day, I noticed that I could stand up easier and faster, dizzyness was gone and i could pee. This initial stuff could certainly be from the placibo effect, but the staying power was certainly not.....it was all LDN.

I didn't have a lot of symptom relief, since I was already SPMS, when I started. I tried to go up from 3 mg to 4.5mg, but my legs got stiff and uncomortable, so, went back down to 3mg and stayed there for about two yrs. I am on 4.5 now.

This med, right from the beginning, had me feeling better.... I presume it's the endorphines, but I just had an overall feeling of well-being. The other DMDs, made me feel awful...UGH

As far as I'm concerned, LDN has stopped, or at least slowed the progression of my illness and dissability. The DMDs have some scientific proof, backing some of their claims, and LDN is, so far, Antidotal. I say, the proof is in the pudding and it works for me.:p

Peeps who start LDN earlier in their disease (RRMS), have reported even better sx relief, Than I ( Talk to Larry LDN or our Cherie here at PT. A friend in Austrailia, just e-mailed me that she started on 3 mg of LDN and loves what it has done and is doing for her.

Good luck to you, Kelly.:hug:

Erin524 07-18-2008 01:46 PM

I really really really want to try LDN.

Last time I saw my neuro (who wears hearing aids) I asked him about the LDN. I think that he misunderstood me and thought I was talking about some other drug that I cant think of the name of right now (also starts with an "N")

I'm printing off some information about LDN for my neuro visit next week. I am so hoping that he'll give me a Rx for it...if not tho, I might ask my regular doctor the next time I go to see him.

Hopefully the neuro will write me a Rx. I dont see what it would hurt, and if it doesnt work, then it doesnt work. But I want to at least try it.

I dont know if there's any pharmacies here in Nebraska that can compound it for me tho. (I should have gone to pharmacy school like I was thinking about a few years ago...darn!)

Victor H 07-18-2008 03:07 PM

That is Great, Sally !!!:)

-Vic

Judy2 07-18-2008 03:53 PM

I'm totally with ya Sally!! The so-called "approved" injectables did a number on me and I just felt miserable all the time. Guess I've been on LDN about four years, think it was about a year after you started that I finally convinced my neuro to prescribe it since all else failed.

Even though I have the nerve pain, it's always been there, and the neuro said at my last checkup, I seem to be stable. Just wish he would have let me take it before becoming SPMS.

Like Sally, the 4.5 mg. caused extra stiff legs so went back to 3 mg and here I've stayed. At the beginning my legs worked some better but the main improvement was in bladder function. I still have to go before I really have to -- LOL -- but without the LDN it's a total disaster. Yes, the well-being feeling is there too with NO side effects, plus it's sure alot cheaper than anything else!!

Try it......maybe you'll like it!! :)

Thanks for the info Sally!

Victor H 07-18-2008 04:06 PM

Good for you, Judy!

If Ty eats the dust for me, then you guys have to (please...) make room on the LDN wagon for me!:)

-Vic

Judy2 07-18-2008 05:00 PM

Sure Vic -- Hop on whenever you're ready!!!! Good luck with your treatment!!!! :)

Kitty 07-18-2008 05:00 PM

Sally, can you take it with other meds like Neurontin, Zoloft and blood pressure medicine?

My Neuro won't even discuss it with me. If I take it I'll try it and see if it works before I tell him I'm on it. He'll probably get mad and tell me to look elsewhere for care.....:rolleyes:

SallyC 07-18-2008 06:14 PM

Kelly, both my Neuro knew and my PCP knows I am on LDN. I think my PCP would write the script now, but I can live with the arrangement I have. A good Doc in Penn, writes the Script and faxes it to Skips Pharmacy in Fla and they mail it out to me.

LDN doesn't seem to counteract with any other med I have taken. If you are on a narcotic pain med (they say) your pain med may not work as well, since LDN, at the high doses is a narcotic antagonist, but I and others have said, that isn't true. I took a narcotic during my tooth surgery and it worked just fine.

It is also suggested not to take it with the interferons, but some have with no problems. It is such a small dose that it really does no harm. It's hard to believe that it does so much good, but it does.

Of course, keep in mind, that, like any other med, you could be allergic to Naltrexone..... and some have been allergic to the filler the compounder uses. Lactose filler, for instance, if you are lactose intollerent.


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