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

Kitty 01-07-2009 05:17 PM

Brenda, I'm so glad LDN has worked for you! I can remember how excited I was after I had been on it a short time. I was thinking I wished I'd heard about it before I went through all the carp with the DMD's.

lady_express_44 01-07-2009 09:37 PM

Quote:

Originally Posted by Kitty (Post 440561)
I was thinking I wished I'd heard about it before I went through all the carp with the DMD's.

I am the only person I know that actually chose LDN over the CRABs (never tried them), and that was probably only because my neuro didn't recommend them to me anyway. (He didn't recommend LDN either, but at that point I had nothing to lose ... )

People are often scorned or guilted into trying EVERY CRAB&T first. :rolleyes:

Cherie

FluteMaker 01-07-2009 09:52 PM

Quote:

Originally Posted by lady_express_44 (Post 440734)
I am the only person I know that actually chose LDN over the CRABs (never tried them), and that was probably only because my neuro didn't recommend them to me anyway. (He didn't recommend LDN either, but at that point I had nothing to lose ... )

People are often scorned or guilted into trying EVERY CRAB&T first. :rolleyes:

Cherie

make that two of us. i never tried the crab drugs either. theres no way i could have even if i had wanted to. they just cost too darn much money

KarenMarie 01-07-2009 10:27 PM

Give me a way to get a script for LDN as my neuro won't -

SallyC 01-07-2009 11:35 PM

My DD wouldn't try any of the shots either. She has been on LDN since DXed....I think 4 yrs ago.

She saw what I went through with first Avonex then Copaxone and told her Neuro...no way! She is doing well with LDN.:)

lady_express_44 01-08-2009 10:49 AM

I forgot about your daughter having only ever tried LDN, Sally. I think if my daughter ends up with it, I'll be getting her on LDN too.

I'm glad LDN is working for you, Flutemaker. I guess there are more of us out there then I realized. :)

KarenMarie, you aren't likely to get a rx out of your neuro, unless he has his own independant practice, and he has other patients with experience on LDN. What about asking your GP? If you are really determined, we can give you some information to present ...

Cherie

Kitty 01-08-2009 12:26 PM

Quote:

Originally Posted by lady_express_44 (Post 440734)
I am the only person I know that actually chose LDN over the CRABs (never tried them), and that was probably only because my neuro didn't recommend them to me anyway. (He didn't recommend LDN either, but at that point I had nothing to lose ... )

People are often scorned or guilted into trying EVERY CRAB&T first. :rolleyes:

Cherie


Amen to that! I'd never heard of LDN before I came to this site and my neuro certainly wasn't going to recommend it! Every time I brought it up he looked at me like I'd asked if chocolate would be an appropriate med to take! :rolleyes: It was this site where I found out about LDN....and I will be forever grateful, too!

Sometimes I think they recommend the CRABs because they know we'll be back in for office visits fairly often because of the bad side effects. :mad:

lady_express_44 01-08-2009 10:20 PM

Quote:

Originally Posted by Kitty (Post 441071)
Amen to that! I'd never heard of LDN before I came to this site and my neuro certainly wasn't going to recommend it!

There are some MS forums that do not like it much when people talk about LDN. :rolleyes: I get banned from those sites. :p

Cherie

PunkDizzle 01-09-2009 12:49 AM

not sure when my last update was but here goes...


i am still on 3mg a day haven't went to the 4.5mg dose yet.. still having no bad effects from it.. but the fatigue fighting effects may be wearing off for me.. or it could be my S.A.D issue.. what with all the snow/cold and dark clouds in the winter i just want to stay in bed all day and do nothing.. man i can't wait till spring.. ( i am pretty sure that is the problem because i am not tired.. just feeling down from the weather)

anypoop i will be moving up to 4.5mg after next week when i get a new Rx from my Dr so i only have to take 1 LDN pill a night and not 3... with all the meds i am on it would total 7 pills i have to swallow before bed if i bumped my dose up now.. with the 1.5mg LDN and all the other meds.. so meh whats another weeks wait to get the 4.5mg pills..

lady_express_44 01-09-2009 12:01 PM

Quote:

Originally Posted by PunkDizzle (Post 441545)
i am still on 3mg a day haven't went to the 4.5mg dose yet.. still having no bad effects from it.. but the fatigue fighting effects may be wearing off for me.. or it could be my S.A.D issue.. what with all the snow/cold and dark clouds in the winter i just want to stay in bed all day and do nothing.. man i can't wait till spring.. ( i am pretty sure that is the problem because i am not tired.. just feeling down from the weather)

anypoop i will be moving up to 4.5mg after next week when i get a new Rx from my Dr so i only have to take 1 LDN pill a night and not 3... with all the meds i am on it would total 7 pills i have to swallow before bed if i bumped my dose up now.. with the 1.5mg LDN and all the other meds.. so meh whats another weeks wait to get the 4.5mg pills..

I get SAD too, but not till Feb. You'd think it would change dependant on the weather each year, but it doesn't seem to for me. The only time I didn't get it was when I lived in New Zealand/OZ for 5 yrs, and it should have happened in about Aug/Sept instead, but I never got it there at all. :confused: (It's cold, rainy and gray there too in the winter, at least in the places I was ....).

You might want to try to hang onto a handful of 1.5mg, if you can. That way if you find the 4.5mg difficult to adjust to, you can alternate nights at 4.5mg and 3.0mg (2x 1.5mg) for short while. Alternatively you could mix whatever dosage with distilled water, if necessary, then just take what you need nightly . . . (worst comes to worst).

I just had a hard time getting up to 4.5mg from 3.0mg, and was thankful I was on liquid and could adjust in small dosages . . .

Good luck!!

Cherie


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