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-   -   LDN Information & Check-in 2 (https://www.neurotalk.org/multiple-sclerosis/71392-ldn-information-check-2-a.html)

CarolM 07-24-2009 06:41 PM

I take mine around midnight each night, usually make it to bed by 12:30.

C

marion06095 07-24-2009 08:23 PM

Most days I struggle to stay awake until past nine to take the pill and go to bed. G'night, all.

FluteMaker 07-24-2009 08:28 PM

9 pm on the buttonfor me. i have an alarm on my phone set for it.

Lady 07-24-2009 09:08 PM

I take it at either 12:30 am, or 1:30 am, or even 2:30 am, then go to bed. I open the capsules and get a direct hit. If I took the LDN in capsule form, as it comes to me, I think I would take it around 11 pm or 12 am. They get stuck, even with food and water to push it down after I take it. So I open them.

I should probably get the liquid form but I have more refills on this script and don't want to go to any more doctors if I don't have to. Did I say I hate doctors? :D

Skip said to me, even up to 3 am is okay, if that's when I go to bed.:)

I wonder when people take their LDN that work the night shift, and sleep in the day. Does it work the same if taken during the day? :confused:

Twinkletoes 08-04-2009 07:36 AM

1 year LDN anniversary
 
Well, folks, I've been popping 4.5 mg. of LDN for a year now.

But I don't know if its slowed progression or not. *sigh

A year ago my left hand was pretty numb (can still use it to type). Today my right hand is feeling much the same as the left. And my lips and front teeth are fairly numb and tingly. And my feet are number than they used to be.

Wondering if I should go back on a DMD (took Copax for 9 months). Think I'll make an appt for an MRI first. Dumb disease anyway. :mad: Wish there were some clear and obvious answers!

SallyC 08-04-2009 09:54 AM

I'm sorry Twinks..:( LDN is not a cure, but I don't feel as if I've progressed, even though I still have symptoms that come and go and some that have stayed.

The truth is...I just feel better and stronger while on LDN. My DD, who scoffed at it, even though she used it, is now a believer. She had stopped for about a week, thinking it wasn't doing anything and had a relapse.

I'm not going to tell you what to do. You do whatever you feel is right for you, Girl and whatever that is, we will support you.:grouphug:

You could add a DMD!!

lady_express_44 08-05-2009 10:54 PM

Quote:

Originally Posted by Twinkletoes (Post 547260)
Well, folks, I've been popping 4.5 mg. of LDN for a year now.

But I don't know if its slowed progression or not. *sigh

A year ago my left hand was pretty numb (can still use it to type). Today my right hand is feeling much the same as the left. And my lips and front teeth are fairly numb and tingly. And my feet are number than they used to be.

Wondering if I should go back on a DMD (took Copax for 9 months). Think I'll make an appt for an MRI first. Dumb disease anyway. :mad: Wish there were some clear and obvious answers!

Hey TT,

So has your right hand/mouth and feet gotten progressively worse over this year, or is it just recently bothering you? Are those NEW symptoms for you?

Have you been checked for any kind of infection? I had a relapse while on LDN that lasted about 9 months, but I found out later that it was due to an untreated infection in my tooth under my cap. Soon as I had it removed, the relapse let up ... although I was left with some numbness/damage from that one.

Do you have spinal lesions that you are aware of?

If you have the option to take Copaxone too, why not do that? Double protection is a good thing, right?

Cherie

poetic license 08-06-2009 12:25 PM

Good news!!

I had intended to start LDN ASAP in June when I was dx'ed but let some other factors get the better of me.

3 weeks ago I had an appointment with Dr. Bihari (yep, the founder of LDN therapy) which got cancelled indefinitely.

After what seems like ages of waiting I got an appointment with another phone prescriber and my script has finally been called in!!!!

I had a yucky day yesterday and today my numbness is a little worse so this is the best thing that could have happened to me today.

The physician I talked to said that in 8 years of prescribing LDN, the vast majority of patients have NO further relapses. A small number have occasional small relapses that they report as being very mild. It kills me that this drug is not more well known, researched, and promoted.

I still have my untouched box of Copaxone in my fridge, so I'll have to think long and hard about what to do about that in the coming months. For now I will sit back and see what LDN can do.

Kitty 08-06-2009 12:53 PM

Quote:

Originally Posted by poetic license (Post 548464)
I still have my untouched box of Copaxone in my fridge, so I'll have to think long and hard about what to do about that in the coming months. For now I will sit back and see what LDN can do.


Good luck! I'm so excited for you.

I'm coming up on my 1 year anniversary with LDN (and nothing else) and couldn't be more thrilled! I started taking it on 8/25/08 and have never looked back. I agree with you......it should be more widely publicized. Just proves that a treatment doesn't have to be ridiculously expensive or have painful side effects to work well. :)

SallyC 08-06-2009 01:16 PM

WooHoo PL!!!!! Keep us Posted,

I think Dr Bihari is just getting too old to take on new patients...JMO,


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