I only stayed on 1.5 for about a week. I bumped it up to 3.0 and that's when I noticed my biggest sx relief.

I still have days when I'm unsteady. And I still have days when the fatigue gets me. But I've found that I have more good days than bad and I'm convinced that were it not for the LDN I'd be in much worse shape.

Hi, LDNers, I'm planning to join you all eventually, but for now, I wanted to make sure you know about this book:

http://www.marybradleybooks.com/

I've seen posts about it in book threads, but, it may help some others to see it here. Up The Creek With a Paddle is all about Mary Bradley's journey to/with LDN. She's a big crusader for it and is making headway in the pharma world. Her husband has PPMS and has benefitted from LDN for several years now.

(((((Nappy)))))) I pray that LDN is just what you need.

Thanks Nappy, I read some portions of this book, some time ago and have known Mary from awhile back. She is a wonderful advocate to have, for sure.:hug:

Let us know when you get started on LDN and my prayers start right now, that you may benefit from it, in many ways, as have I.:)

Thanks for the link to the book, Cindy! I hadn't heard about it but want to read it.

I hope LDN works as well for you as it has for me. Let us know when you start on it. :)

http://www.larrygc.com/mystory is my journal thread about my early days

Hi Karen Marie, After My Nap and All,
Here's my two cents worth to be added to the group. :)

I noticed a difference with my symptoms with LDN as soon as I started to up my dosage to 3.0 mg. I took 1.5 mg for 10 days, and felt pretty good. Then started taking 3.0 (two capsules at night). It seemed to help more and more after two weeks of being on the higher dosage.

I felt real good. I never had a down day since. Even with the 1.5 mg dosage. MS can surely give us some down days, but I was always in a great mood, even with the Christmas hassles and all past holidays. Also with the stress of my kids, and family too :D

I am still feeling great. Increased endorphins, or making more now, when I might not have been making enough could be the answer to feeling good, IMO. I may have been low, I don't know.

I don't want to ever stop taking LDN to find out. Laughter and happiness is wonderful. I never really laughed out loud so much before. I am happy.

Then small symptoms got better. Then bigger things like balance and walking got much better, without me even realizing it. My DH noticed the changes more than I did. My Neuro finally saw them too while testing me for my regular exam. It is now in her records.

I find I can look back easier to notice the improvements, than picking them out day by day. The benefits are so gradual and smooth it surprises you when you can do something that you haven't done in years, and not even realized you are doing it. It's still amazes me! :)

My PCP gives me the script and I get it at Skip's in Florida, by mail. I get a 90 day supply. I have 5 refills on it too. I have been very happy with the results, and all the better health benefits I have received by taking LDN. :)

I don't feel I need to increase it at this time to the 4.5 dosage. We are all different with our symptoms. We all metabolize the drug differently. Some need more than others, just like a pain medication. I am only on it since December 2008.

But, I must repeat myself. The five months on LDN has changed my life, my outlook, my energy, my worst symptoms, and my other auto-immune diseases have been helped too. I have tried the DMD's (CRAB's) for years with very little help from them, and many bad side effects while on them for me.

The DMD's could not do what LDN has been able to do for me. The other MS meds like Neurontin and Provigil, etc., I have been able to wean off of them too. If I find need steroids in the future, I would just add them.

So I would like to say, good luck to both of you, all of you. Just give it time to work for you. Also think positive thoughts too.:hug: I pray you both see great improvements. It can't hurt to try LDN. We try old and new drugs all the time with this disease.

I must admit, it hasn't helped the MS hug. During the day it is better but at night it is noticeably there. My choking is gone, for good I pray. B & B issues have gone too. See, if I think of them, I noticed things have gotten much better.

Be well everyone, no matter what drug you are depending on for help. :hug:

Lady, that is such good news! I only wish everybody could enjoy the benefits of LDN as well, but I guess that just isn’t the way things are. I count myself as very fortunate to be one of the people who improve noticeably. Good for you!

Good Article For Those Considering LDN
 

theres a lot of people who consider that book to be an LDN bible
i hope the LDN shows you some favor and you get some symptom reliefe.the thingi tell everyone who asks me about the stuff is to keep expectations realistic.you still have to eat right and exercise.the LDN is only part of the puzzle.theres a lot of work on your part too.

something i got emailed from Dr Mercola's web page talks about adding some sort of super antioxidant(Alpha-Lipoic Acid) to the LDN to basicly turbo charge the effects

http://articles.mercola.com/sites/ar...e-Disease.aspx

there's a video clip too and Dr Mercolas comments to the article as well as 100 or so user type comments.

FluteMaker, I JUST came in here to post this!! :)

Not a member...couldn't read it..:mad:

just scan down the page - don't need to be a member -

Oops, duh..:o.. Thanks..:hug:

i was reading it and it struck me much in the same way reading about the LDN did. its intriguing enough that i want to know more, maybe even try it to see for myself. the LDN has already gotten me the gift of having days where i feel normal. i still have bad days but i have more good days than bad.if this ALA can make that even better................

on a somewhat related note;
i did look into the colloidal silver too. i have a friend here in town who has been raving about it and the energy level it gives her. so she ordered her own 'generator' and makes her own.
she made me a batch a few weeks ago and i did give it a good fair try, but it seems to make my legs feel more tired than anything else('course my friend has been spms for 12 years and her legs are trashed already).i didnt notice any real boost in energy and in general i felt poor so ill be dropping that and i guess ill just stick with the coconut oil to deal with candida issues.

i did do the snapshot test for candida and it was there. when i got on the coconut oil and got it under control i did notice a further improvement ove the LDN alone

ALA is still in the trial stages, Kiddos. They don't have any idea of the proper dose and also how much is safe, long term. Taking a small amount probably won't hurt, but I would guard against taking too much..:eek: JMO! Our own bodies usually make enough ALA for us, but who knows?

Some good news concerning LDN.

Had a neuro appointment two weeks ago and after going through all the usual motions, he asked if I was still taking the LDN. Well....duh......of course. He also asked if I thought it was helping at all.......YES. A couple times the prescription has gotten messed up and after a week without it, my legs were worse, believe it or not, and also my bladder "issues".

He said he feels after having had MS for such a long time (19 years diagnosed, probable 13 before), I should be in worse shape!!! As I've mentioned before, I just wish he would have agreed to let me try it before I became SPMS being none of the injectables were tolerable for me. He also mentioned the clinical trial now being started for LDN and appeared all happy and telling me something new. Why don't they ever listen to us????

If you haven't already, try it, you'll like it!! It's also much cheaper and less painful than those awful injections!!!

And so much safer, too! :)

these guys could use a few more signatures. theyre looking for a million and so far they have 47.lets help them out a bit

http://www.thepetitionsite.com/1/fun...ials-in-Canada

its been kinda quiet so i guess ill give an update to how im doing on LDN.im back to work full time.have been for about 6 months or so. i work in an animal shelter with aggressive dogs. yesterday i mowed my lawn, edged the entire property,did 7 loads of laundry,vacuumed the entire house(two stories)and walked my dogs(one at a time)8 blocks out and 8 blocks back TWICE. then i made diner for my wife when she got home.all without naps and i didnt go to bed till about 1 am.all in all,the LDN rocks

Sheesh, Flute...:) It just ticks me off that I didn't discover LDN until I was already SPMS..:mad:

I am so tickled for you and may it continue forever..:hug:

Hi LDN people!

A while back I asked for info about LDN for my Mom. She is now on it and going through Skip's pharmacy and she absolutely loves Skip (or whoever she was on the phone with for 45 mins.!) At first she had problems finding a doctor to prescribe it and he even offered to help her out! Anyhow, my mother is feeling glad she is on LDN and seems lessed stressed out about having PPMS because I think she feels like she is trying to do something. I really think she has had MS for many years and it is now SPMS--she had some optic neuritis problems years ago and just never did anything about it. Although another doctor thinks she has Primary Relapsing MS.

But thanks for your help! :)

Natalie

I'm so happy that your Mom seems to be doing well on LDN, Nat. Ask her to come in here and talk to us, if she wishes..:hug:

I had a day like yours, flutemaker, and I topped it off with watching my daughter's ball game. I'm making a quick trip to the US tomorrow, and hoping to be back in time to watch them win "gold" in the tournament. :)

Certainly not every day is THAT productive, but these kind of days are something I never expected to see again, 5 or 6 yrs ago.

Cherie

BTW, Sally ... I was lucky enough to start just as I was transitioning from RRMS to SPMS. I've managed to hang onto the RRMS label another 4 yrs, so I consider myself lucky. :)

true enough, i still have bad days too. im not sure if its the MS or just me being lazy. but there are days when im far less productive. we'll see what happens over the next few weeks and months, i may be moving to another state soon as my wife looks for a new job. the stress she deals with will surely bleed over onto me, finding new doctors,will my van survive............yeah,we'll see what happens.

i did some more looking into the ALA for MS ideas and what the deal seems to be is to help cut off flairs before they get really rolling. the thought being that flairs are brought up by oxidative stress so to nip 'em in the bud you ramp up the anti oxidents. the ALA is supposed to be some hotrod antioxident. as a component to the LDN they havent found an ideal dosage for the ALA, but the bottle i got the other day gives an adult dose of 200mg per day with food.
aside from the ALA they also said you could use other antioxident such as vit C and vit E.but you have to up it a bit, 2000mg of C and 800iu of E.
the ALA is also one of the omega fatty acids( i forget if its omega3 or omega6)

The very first Neurologist I went to (the one who dx me) suggested I take ALA. I never did - I started on Copaxone soon after I was dx - but now I think I'll give it a try.

I've been doing pretty good. The heat and humidity still zaps me and my right hand is still very numb.....but nothing else has cropped up.

I had a little burst of energy this morning, too. I cleaned both bathrooms, did 2 loads of laundry, made BBQ pork and Macaroni and Cheese for dinner, baked a batch of brownies and paid bills! And I don't feel the need for a nap this afternoon! :D

What time is dinner, Kelly? :p

I may try some ALA, myself.;)

Oops......we already ate!! :o But there's plenty of leftovers! :cool:

the ALA i bought was a 200mg, 100 count bottle from walmart at $7.49 and since its only 1 a day should last me a fair while

awsome on the full day, kitty! its always great to get more done than you thought you would. it almost leave me feeling like a person without MS

Hi all! I've been mia more often than not lately. I'm stuck on 3 mg of ldn. I get really cranky on 4.5, argh!! But.....dh is on 4.5 for Crohn's and he's doing great!

I'll jump in with the same thoughts as you Flutemaker. When I get a real good day, and accomplish more than I realized I could do, and without a nap, I forget I have MS too. I almost feel normal again too. :)

It feels so good to get my "To-Do" list done in one day. I am full of energy most days, with just a few days now and then when I only get a little bit done.

I find the weather has a lot to do with it too. On cold, damp, rainy days I get kind of mopey and want to nap. Then I don't sleep as well at night. :( I try to avoid a nap so I can get my zzzzzzz's.

I am still on 3.0 mg of LDN. I haven't tried to increase it. I don't want to mess with a good thing. :)

It's great to hear that everyone is doing so well.:hug:

How are you doing on 3.0mg, Joellelee? If that works for you, it's ample anyway . . . so stick to what works.

I used liquid and adjusted up in from 3.0 mg to 4.5 mg, in .5 mg increments. You can mix it with distilled water and try that, if you think you might get some benefit from going up slower. (I can go up 1.5mg at a time now, and I adjust it up and down that much every fall . . . but the first time I didn't adjust as easily.)

I'm really curious about your hubby too. I know he was trying other meds and not doing so well last year. Is he still on other meds or just LDN? When did he start on LDN? Has it stopped his "attacks"? Doesn't your son have Crohn's too?

It has worked extremely well for my Ulcerative Colitis too ....

Cherie

Lady, that's a HUGE accomplishment, and I'm so happy it's worked out for you too. :) For people who are fairly new to this disease, I think we might take the benefit for granted a little, or even perhaps doubt that LDN has made the difference (sometimes), but when you've had the disease a long time, you KNOW when it's working for you.

I agree with Sally though, that it would have been nice to get started earlier. I was in denial for a long time ... so even if I had heard of it sooner, I wouldn't have thought my life would be affected as much as it has.

I can live like this though. :D

Chere

Funny you should mention your other disease, Ulcerative Colitis. Well not funny really, but interesting I must say.

I have another auto-immune disease, that is somewhat rare, and was told I was born with it. It is Collagenous Colitis. Biopsy colon confirmed.

LDN has stopped all my symptoms of this, thus the pain is gone too. :) It is not caused by being nervous or upset. It just is.:cool:


http://www.gihealth.com/html/educati...usColitis.html

thats where im feeling real lucky, that i got on the LDN so early.one thing that still kills me is the LDN was available when my mother was alive and we knew nothing of it. and when i think of just how quick she went down hill.......

someone up there may like me afterall

I know you were concerned about starting on LDN because of other complications you have, but maybe that was allergies/sensitivities. I have a lot too, but LDN has been so.... simple.

My best friend got lung cancer, and began chemo. I kept trying to tell her to try LDN, but she was nervous. The cancer came back and she died within two weeks that time. Before she did though, she got ahold of Dr B, and was meant to be having a phone consultation on Monday. She died on Sunday. :(

Her husband always sends everyone that he runs into with cancer or MS to talk to me now. One of the last things she said to me is that she regretted she never gave it a try.

Of course there are no guarantees, but I wish she would have tried too.

Cherie