NeuroTalk Support Groups

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

SilverLining 08-27-2008 12:24 PM

This was my experience as well. I did notice immediate improvement. But the broad scope of it didn't hit me until later. I noticed the spasms improve immediatly. But later I realized that the burning pain was also gone. The fatigue improved also until recently. Also the numbness improved as well. I was able to walk and do things again.

When I started getting sick this year I was terrified that the LDN was not working anymore. But then I missed one dose in July and found out that it was definitely working. Missing it induced serious pain, spasms, etc. After 9 months I am hopeful it will continue working this well.


Quote:

Originally Posted by lady_express_44 (Post 355957)
Some changes are insidious, and it's when you look back over several months that you realize that some symptom went away.

I happened to get very obvious symptom improvement from the get-go, which was really a major "bonus" since that's not why I got onto the LDN. However, there were changes that took weeks or months to notice too, and it wasn't until I looked back that I realized "that" was gone.


Twinkletoes 08-27-2008 01:44 PM

Quote:

Originally Posted by SilverLining (Post 355966)
This was my experience as well. I did notice immediate improvement. But the broad scope of it didn't hit me until later. I noticed the spasms improve immediatly. But later I realized that the burning pain was also gone. The fatigue improved also until recently. Also the numbness improved as well. I was able to walk and do things again.

When I started getting sick this year I was terrified that the LDN was not working anymore. But then I missed one dose in July and found out that it was definitely working. Missing it induced serious pain, spasms, etc. After 9 months I am hopeful it will continue working this well.

Whaaat? Missing one lousy dose will do that to you?

*gluing reminder to my pillowcase*

SilverLining 08-27-2008 03:27 PM

It could just be me.... but yes it did. (Anyone else weird like me??)

When I flew to Minnesota in February I wasn't able to put it in the fridge...and I wasn't doing well by the time we got back. But actually missing a dose was totally different. Now there were other factors (very little sleep, uncomfortable hospital furniture, a tad bit of STRESS) and it may not have been all the missed dose... but either way, I'm not risking it again.

Oh, and I don't forget because I set the alarm on my cell phone. It automatically goes off every night at 11:30pm to remind me if I haven't taken it by then. :)

Quote:

Originally Posted by Twinkletoes (Post 356012)
Whaaat? Missing one lousy dose will do that to you?

*gluing reminder to my pillowcase*


weegot5kiz 08-27-2008 04:44 PM

i have been too afraid of missing a dose so I have not had that happen to me as of yet

hope everyones week is going well, I have been very over tired not sleeping well plus the last week or so was a bit hectic

SallyC 08-27-2008 10:37 PM

I have missed a day of LDN, here and there and it didn't seem to bother me. It's when I missed two days, because I was out, temporarily, that it hit me..:eek:

You can believe that I haven't made that mistake again..:D

Feel better, Frank.:hug:

Kitty 08-28-2008 05:48 AM

Quote:

Originally Posted by weegot5kiz (Post 356121)
i have been too afraid of missing a dose so I have not had that happen to me as of yet

hope everyones week is going well, I have been very over tired not sleeping well plus the last week or so was a bit hectic


Frank, you've had so much going on lately that it's to be expected that you'll feel overly tired. You need some rest!! :hug:

weegot5kiz 08-28-2008 12:30 PM

thats what I am thinking, cause while deb was in hospital thats where they wanted my kiester too. so instead she had to go in because of her new job, and had to get back asap. so it will probably take me a few more days to be back to my spastic self:Dancing-Chilli::Dancing-Chilli::Dancing-Chilli:

lady_express_44 08-28-2008 12:44 PM

You have made a lot of changes in a very short period, Frank. Reducing some meds, the things going on at home, etc. I wonder how you feel you would have coped with those things if you hadn't got on the LDN, under the same circumstances?

Please feel free to disagree . . . just a thought.

Cherie

lady_express_44 08-28-2008 12:50 PM

Quote:

Originally Posted by Twinkletoes (Post 356012)
Whaaat? Missing one lousy dose will do that to you?

*gluing reminder to my pillowcase*

I am on the liquid too, and my pharmacist prepares a month at a time. The liquid has a much shorter shelf life . . .

I can tell by the 3rd week that the LDN is not as potent. Most times I try to refill it every three weeks, but there have been times I've pushed that out to the end. I notice the difference as soon as I get on the fresh batch.

I have missed a few days, on a couple of occasions, and it's not pretty. In fact, for a long while I was measuring only 2.75 mg accidentally, and that was at the same time as all the infections were going on in my body, and my spinal lesions were acting up. If my doc hadn't eventually asked me how I was measuring it, coincidentally, I'd never have thought to re-measure it myself. I'd still be measuring the wrong amount. DUH!

After a person stabilizes, it's a fun test to not take it for a day or two, just to see what a difference it is making. We tend to take things for granted after a while.

Cherie

SilverLining 08-28-2008 01:06 PM

Quote:

Originally Posted by lady_express_44 (Post 356580)
I can tell by the 3rd week that the LDN is not as potent. Most times I try to refill it every three weeks, but there have been times I've pushed that out to the end. I notice the difference as soon as I get on the fresh batch.

I'm not sure why the pharmacist does this. I mix my own and I use the 50mg pills. This makes about 2 weeks worth. (Give or take a little.) It is still fine by the end of that time. But, any longer and it's not.

I would ask him to only make two weeks at a time but if your dose is lower he may already be using that 50mg pill. He could always cut it in half and do 25ml at a time. I did that for the first few months until I decided to see if the 50 would last. It did.

Oh and I can sympathize Cherie, I've got an infection right now and it's not pretty either. Talk about pain... *sigh*


All times are GMT -5. The time now is 03:28 AM.

Powered by vBulletin • Copyright ©2000 - 2025, Jelsoft Enterprises Ltd.

vBulletin Optimisation provided by vB Optimise (Lite) - vBulletin Mods & Addons Copyright © 2025 DragonByte Technologies Ltd.