Dr Bahari's wonderful and I'll thank him 'til my dying day for bringing LDN to us, but he experiments too and has changed his mind about optimal doses, over the years.

He said, from the beginning, that anything under 1.75, probably, wouldn't do the job and anything over 5mg, would be too much....now he, perhaps, says, not below 3mg and not over 6mg?? (I know of at least one of his patients on 6mg)

Nothing is written in stone and we are, after all, still experimenting. Until it is proven and written in stone, I say, yes, try the different doses and then, stay with the doseage that is working for you.

I'm glad you called Skip, Frank....He told you the right thing to do, for now.

Cool it down a little, Cherie..

Thanks, Cherie, I appreciate your post. I tried to register for that forum, but my computer's being slow today.

Sally, is Dr. Bahari someone you've met in person? I am grateful to him, and to you for starting this thread, else I would not be on LDN today.

You're exactly right, Sally. Whatever dosage works best for you is what you should be taking.

I'll keep attempting to go up to 4.5 but if my body keeps telling me that's too much I'll go right back down to 3.0. I'm assuming one day my body will get tired of fighting me and accept the 4.5 dosage!!

The doc gave me a rx for 3.0 capsules and 1.5 capsules so that I can go up to 4.5 when I feel the time is right and, if that works, he'll give me more of the 1.5's so I can sustain that level.

Frank, if the lower dosage works for you then just keep taking it! We're all different so it's not unusual for us to have different doses that work best for us.

Sally, I'll let you know when and if I ever get the 4AP and how it works for me. Thanks!!

It has been a while since I checked in with an update, so here goes:

I have now been on LDN for a couple of months, give or take. I am on a 3.5mg dosage. I remember when I first started LDN, I felt an amazing ease of physical movement, and an almost complete lack of the tremors that I had been having non-stop for years. I still have very little to no tremors. The ease of movement is still there, but along with this has come the realization that I now have a 61-year-old body that hasn’t been at all active in quite a few years. I guess that I have years of muscle wasting to undo. I often have the sort of body stiffness/pain that is understandable under the circumstances. It isn’t the same as MS stiffness and pain, though. It feels like I am an athlete who is training hard, and I guess that’s exactly what I am. I am building muscle mass that has been gone for years. To be honest, it feels wonderful – in a sort of awful way if you know what I mean.

On the practical side, before LDN I was a rollator/powerchair person when away from home, and a wall walker around the house. I have not used my power chair since I started LDN, and I have only used my rollator a few times; when I knew I’d probably want a place to sit down. I attribute my newly found mobility to an improvement in my balance, as well as a reduction in clumsiness.

In summation, I am still amazed at the improvement. I have had a few days where I haven’t felt all that much better, but those days are outnumbered by the days that I thank my lucky stars that I am one of the people with MS that is helped quite a bit by LDN.

Marion, I am glad to hear that LDN is working so well for you. Congratulations!

The method I choose to increase balance, strength and get some exercise is:

Yes, a mini-trampoline. It has done wonders for me. Don't laugh, it's fun! I use a stabilizing bar for balance with it...so no falling.

I do have a question for all of you "LDNers"...

I have RRMS and don't have a lot of symptoms that you all are describing. I am still quite mobile, no bladder issues, no tremors or spasticity. My main problems seem to be fatigue, headaches and optic neuritis...but that is only troublesome when there is an exacerbation or lesion.

Does the LDN address your symptoms or the cause?

Brenda

its hard to say and depends on which school of thought you follow. the general ida is that the LDN can interupt the progression of the MS and what ever symptom relief you get is a bonus. for me, my fatigue level is way better than before the ldn. i have a coworker who is now using the LDN for her MS too and she tells me her ON is clearing to the point where she can read things on the television again.

For me it has turned the clock back on some (but certainly not all) of my symptoms. I am more ambulatory, and my manual dexterity is much improved. As for LDN’s ability to stop progression, I cannot say as yet. I have not been on it long enough to tell. I have, over the past decade, experienced a noticeable (and sometimes frightening) decline in function. I expect that over the next few years I’ll be able to report what trends become obvious to me. Until then I am hoping for the best, and staying prepared for the worst

So, the LDN helps with minor symptoms enough to make it work taking?

How does it "interrupt" the progression of the MS?

That is good news about the ON. It is the original "injury" that keeps on coming back for me. The IV Steroid treatment wipes me out BAD!

It seems to work differently for everyone, Brenda . . . just like all the meds.

For me it helped many symptoms, but I was a LONG way down the MS-track too. I had no expectations when it came to helping my symptoms, so I did look at that as a huge bonus. It may, but isn't necessarily going to help for the specific symptoms you have (and you don't have many yet), but the MAIN goal of LDN to is slow disease progression and reduce relapses.

Everything about this disease is basically "theory" at this point. They don't know what causes it, or why some of us respond to some meds, and others don't. They don't know if we all have the same disease, and they don't know why a person with one "apparent" lesion is totally disabled, and another person with 100 lesions is doing fine. All of the current meds we used are based one of many "theories", but so far none of those drugs have proven to make a lot of difference for the majority of people in the long run.

My decision to go with LDN is a personal one, just like everyone else's to make their choice. I want to feel as good as possible (and I didn't for a few years prior to LDN), I hope to have less relapses (just because I don't like them), and I hope the obvious disease progress to be slower. So far, that's what LDN has done for me, but I'd be happy if all it did was keep me "able" for as long as possible.

Cherie

This is probably the main reason for my frustration...and I am new to expressing it. I suppose I trusted the doctor a little bit too much and never asked these questions originally.

I appreciate all of you sharing, because it is helping me sort out how I feel about it.

Can you answer another question for me?

What side effects, if any, do you experience with the LDN?

This is the least talked about on the websites, perhaps because there aren't any side effects to worry about? I am more hesitant these days and don't want to be a guinea pig.