If I were in your shoes I too would say go with the LDN.

If for some reason I had to stop Rebif (like my liver), I don't think I would try anything else, just continue my LDN.

Kelly, I am sorry you are dealing with sx from an existing lesion, but happy that you do not have any new lesions. I am still considering LDN and plan on discussing it with my neuro next month at my appointment. Even though I have no experience with LDN, it seems as if one month is not enough time to make a decision as long as you are not dealing with any nasty side effects.

Flute, You are right. None of the CRABs or tysabri are a guarantee against progression. But my problem is that there are no studies at this point that demonstrate that LDN may aid in slowing down the progression of ms or the number of lesions, despite what a few doctors may claim. I really wish there would be more studies, but I understand that there is little incentive for any of the drug companies to sponsor these studies.

Thanks for the responses ya'll. I'm going to stay with the LDN. And I'm also going to look for another Neuro....or possibly just go to my PCP until Medicare kicks in.

Yesterday while I was at my appointment he told me (again) how he thought Tysabri was the drug for me. I (again) told him that I did not want to go that route and it really didn't matter because I had no way to pay for it after December anyway. He seemed to get annoyed that I wasn't open to his suggestion and the appointment turned sour after that. He pretty much dismissed me by saying "come back in six months....if you want to." I doubt I'll go back to him. :(

Kelly,

Sorry the appointment did not go better. I wonder how many doctors have any idea of how expensive the drugs are that they prescribe. I hope that LDN does help you. Would you consider getting into a trial for a new treatment? Then the drugs, MRIs, and exams would be covered.

Kelly, it is too soon to judge whether LDN is going to work for relapses or progression, definitely. How long have you been at 3.0+ mg? Even if it DOES work in the longer run, it doesn't mean we aren't going to have a few relapses, or a little progression along the way.

I have found infections set off my relapses . . . so this is something you have to stay on top of, whether you are on LDN or not.

It almost sounds like your neuro as a vested interest in you taking Tysabri. Who knows what that might be (financial, or just a bet with a buddy to see who can get the most people on that med :rolleyes:), but he should not be presuring you like that . . . especially knowing your financial limitations. My neuro "mentions" other options . . . or at least she did for the first few appointments, but now she is happy if I am happy. :)

Tysabri has a record for reducing relapses by 68% (compared to placebo), but a reduction in relapses does not necessarily amount to anywhere near an equivalent reduction in disease progression. The same is true for reduction of enhanced (or virtually any kind) of lesion.

Long term studies have shown that the vast majority of people do not benefit in the long run (with a reduction in disease progression) from the drugs that we currently try . . . so we are using them to (hopefully) have less relapses, and (hopefully) less holes in our brain. But, they don't actually work (for most who try them) to reduce progression of the disease, ie. disability in the longer run. That's not good enough for me, especially if it is costing $100,000 a year!!

I would give LDN a year, unless you feel terrible all the time, or you get worse (not "old" lesions acting up, but new one's).

Cherie

I agree, Cherie. I'm going to give it at least a year (or longer). I'm not convinced that any of the CRABS do much of anything. And I feel better on LDN than I have ever felt taking anything else.

hello all sorry been down and out as of late, and I am my worse enemy:Bang-Head: can we say i did too much these past 8 days i cant move today woo hoooooooooo which is good i really didnt want to move today

peace everyone

How's everyone doing?

I'm still hanging in there....taking my 3.0 dosage each night. I'm still dizzy but it's letting up just a bit each day. I know not to expect it to be gone overnight so I'm just taking each day as it comes.

I have a phone consult with the doc on Monday....I've got to remember to set my alarm that day so I don't forget!! I forgot my last appointment....:o

Hope everyone else is doing well. I saw some posts from others on LDN who were having great results! I'm so happy for you.....isn't it nice to feel like actually doing something once in a while!!? :)

Now that the weather's cooling down, I feel much better.

I wonder where I would be now, with MS, if I hadn't started LDN on 4-12-03??

Happy things are going okie dokie for you, Kelly..:hug:

I'm doing pretty good, thanks for asking!

I've spent a couple of hours the past 3 days painting my foundation. It's a weird color: no one can agree if it's green or brown! But we agree that it looks like a baaaaad diaper!!!!

I've done hours of shopping at Home Depot for our kitchen renovation. Getting ready to sell the house. So WHY didn't we redecorate for ourselves, instead of for the next occupants? :confused:

I guess I'll learn how to tile (backsplash) and install Pergo. I've got so much stuff to do, that I just don't know where to start! The new countertops don't come for 5 weeks, so can't tile just yet.

But, to answer your question: YES YES YES YES!!!! It's nice to feel like doing something once in awhile!!!

BTW, I feel better since I dropped my dose down to 3.0. Not quite so achy in the mornings. And more energy.