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marion06095 09-20-2008 10:06 AM

Weighty LDN issue
 
Has anybody else on LDN lost weight? I’ve managed to drop five pounds over the month I’ve been on it. I find it much easier to pass up extra food lately. You?

Tree55 09-20-2008 10:52 AM

I've been on it for 3 months and have lost a couple of pounds. I'm finding that it is taking me longer than most here to see the results of symptom relief, etc. from LDN. I am seeing results, slowly though. Weight loss is a good thing for me :)

marion06095 09-20-2008 11:24 AM

Tree,

Your are right. It makes sense to me that peoples’ bodies react to this drug differently. Don’t forget, it’s not the LDN that brings change. It is your body’s very own endorphins providing for its own custom made improvement. As for the side effects, what person wouldn’t want thicker hair, stronger nails, and a more streamlined physique? And all this is for around a dollar a day?

lady_express_44 09-20-2008 01:37 PM

Marion, I lost 30 lbs, but that wasn't until I was able to get off antidepressants a year after being on LDN. I think the use of them (A/D's) caused me to gain weight over a period of about 2 yrs, and the ability to ditch them caused me to lose it. The weight just "fell off" though, with no effort what-so-ever on my part. :)

Tree, I've heard it said the probability of symptom relief might be dependant on how long we've had that symptom. I don't know if I believe that because I managed to get rid of the claw hand that I had had for 5 yrs. Most of my other symptoms though, were only about 2 yrs old . . . but most had been consistent and very debilitating throughout that time.

Some changes are very insidious though. I've heard people say that one day, after several months on LDN, they suddenly realized that hadn't used their cane for short distances in a long time. I think it's kinda' like we don't always notice as things slowly progress (with the disease process), and we don't always notice as things slowly improve (from LDN) either.

Not everyone experiences substantial symptom improvement either, for whatever reasons. :confused: I looked at symptom improvement as a "bonus" because I was taking LDN to HOPEFULLY affect my disease progression and relapse rates.

Cherie

Kitty 09-20-2008 01:41 PM

Quote:

Originally Posted by marion06095 (Post 372160)
Has anybody else on LDN lost weight? I’ve managed to drop five pounds over the month I’ve been on it. I find it much easier to pass up extra food lately. You?

Me! I have! It's been a nice side effect. I'm down 15 pounds since starting it - but I was weaning off the AD's and Neurontin at the same time and I believe it was those two that were the culprits. Still though, I don't have too much of an appetite. :)

Tree55 09-20-2008 02:41 PM

Quote:

Originally Posted by lady_express_44 (Post 372292)
Tree, I've heard it said the probability of symptom relief might be dependant on how long we've had that symptom. I don't know if I believe that because I managed to get rid of the claw hand that I had had for 5 yrs. Most of my other symptoms though, were only about 2 yrs old . . . but most had been consistent and very debilitating throughout that time.

Some changes are very insidious though. I've heard people say that one day, after several months on LDN, they suddenly realized that hadn't used their cane for short distances in a long time. I think it's kinda' like we don't always notice as things slowly progress (with the disease process), and we don't always notice as things slowly improve (from LDN) either.

Cherie

I know everyone is different. I also was on IVSM for 10 days in 10/2007 and then 3 days once a month from 12/2007 through 04/2008. Started LDN in 06/2008. I'm wondering if that has any effect on how LDN is working.

I appreciate your encouragement. I enjoy reading how others are doing well.

Marion and Herekitty.....way to go with weight loss side effect :cool:

weegot5kiz 09-20-2008 06:00 PM

hello everyone

well I have decided to back it down to 1.5mg, so far so good, i noticed about same time I went to 3mg I became very sluggish, wake up go back to sleep no energy, well I want to see what happens back on 1.5, I was doing better at that dose. so far am waking up early and not going back to sleep even got some stuff done and made sure I didnt overdo itsee how it is by mon weds? I hope all are doing well

Sally I miss you:hug:

Twinkletoes 09-20-2008 11:50 PM

Nope, no weight loss for me. But I am currently on an AD, so am optimistic I'll have a similar experience to Cherie's. I really need to lose weight! *insert chubby icon here*

I just increased my dose to 4.5 mg.

And Frank, I know what you mean about waking up feeling sluggish.

Yesterday I was ready to throw in the towel, even though I promised myself I'd give it a good effort. I've only been on LDN for 7 weeks, and that really isn't long enough to give it a chance.

To start with, my symptoms weren't as severe as many of you (just diagnosed 1.5 years ago), so maybe that's why I've noticed more unpleasant side effects of the LDN (b/c I had less to celebrate).

The one positive thing that I've really noticed (most days) is improved stamina. Even if I don't wake up feeling very energetic, as long as I get moving I can go all day.

For instance, today I got up and took a mega-dose of Ibuprofen b/c I was achy. I was able to get ready and get on a plane at PHX airport, land in SLC and drive 2+ hours home. I still had energy when I arrived and actually unpacked my bags (something I almost always procrastinate due to lethargy). It's past 10:30 p.m. now and I am tired, but not dragging.

The clincher will be if I am able to make it to church in the morning by 9:00. If I can just get beyond the body aches, I'll be okay. The body aches and sluggishness are what prompted me to give up on Copaxone after 9.5 months.

I really do not want to try any of the other CRABs or Tysabri. I'm hanging all my hopes on LDN.

Glad you all are experiencing positive effects. But I wanted to be honest about my experience because, for those looking into using LDN, its good to weigh the pros and cons before making a decision.

Kitty 09-21-2008 09:20 AM

Here's my understanding of LDN....and please correct me if I'm wrong because Lord knows I've been wrong before!!

All the beneficial side effects we're having are all pluses....some may have them and some may not. I have days where I feel great, some I feel just so so and some I don't want to get out of bed. As long as LDN stops or slows the progression of my MS I'm satisfied whether or not I have the nice side effects. Only my MRI will tell me if this is happening or not. Now, having said that, I can say without a doubt that I've felt better while on LDN. I just don't expect that I'll feel terrific every day - just as I didn't feel terrific every day before I had MS.

But I can always look back and see a common denominator when I feel "off"....like right now I'm lightheaded and dizzy but....I have a sinus infection and I'm taking antibiotics.

I'm going to stick it out for at least a year. I feel like I owe it to myself to give it that much time...otherwise I don't feel like I can make a good decision as to whether it's working for me.

So far so good here.....I hope it stays this way. :)

Twink, you're a busy lady....I'd be fatigued if I kept your schedule even if I didn't have MS!! :) I hope you feel better soon! :hug:

Frank, you, too. You're busy all the time - and you don't get much sleep....which can make anyone (MS or not) feel sluggish. I know....I'm not a good sleeper either but sometimes I just have to make myself rest even if I don't want to. There's always tomorrow to do the chores left over from today. :p

weegot5kiz 09-21-2008 10:06 AM

Marion I dropped twenty four in last few months but was also under orders to cut fat out completely something about blood pressure could fuel a charging elephant and my cholesterol well lets just say I can no longer put butter on my butter:hissyfit:

as for sleep well, its overrated, will come a time when I will :Zzzz:, I never have worried about it, I have always been late to bed early to rise. i understand sleep would help eliminate some of my bad days, so what, i enjoy staying up late watching science stuff or read a good book, chatting or playing a fun game, like I said its overrated in my book, there's too much life, to be had, this all being said I was up bright and early again:Hum: and was up late and am not sluggish:yahoo: like I said i will wait till weds to see what gives with going down to 1.5

something I have noticed about a lot of meds since my little guys first seizure, that was his 5 yr old bday gift, all those meds and worries fears stopping one and trying to have faith the next one will it work real quick so his seizing ceased, I see a lot of familiar things with the MS meds its a crapshoot, there's no two ways around this, what works for me, might make you worse, I am sure this applies to other situations and illnesses, sure seems to be prevalent with MSers

I agree Kelly about the side effects from this are pttttfff nothing compared to the 5 pills I stopped, and it has a better chance of slowly then anything out there i like 3/5 type of odds better than 1/3:Ponder:

and from my view it may seem rash, hope not but regardless of what I take seems like something is gonna happen either the MS or meds reactions, yeah my ms SX bite, but you know what I will take those over the effects of those 5 pills, i may regret this, down the road, I don't think I will though, as long as I have friends stay positive try and never give up. and at least keep abreast of medical breakthroughs ideas and possibilities, I have as good chance as someone who takes everything out there, sometimes i think positive mental attitude is the best med out there,

ok wowsers lol I type lots hmm time for a cup of coffee, see this is two days like this , fingers are crossed, hope your Sunday if a funday


peace


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