Kitty...my PCP said that LDN is on the list of meds that he CAN'T write off-label for in the State of Utah. So phone consultations will have to be the way for me. He was at least open to writing the Rx, but I guess it's on "the list". Good luck with your PCP.

I slept GREAT last night! No adjustment needed. I am feeling good so far. I should be tired, PMS...I'll keep you posted.

Lady - something interesting that I learned when deciding to do LDN for myself. I had always been told that pregnancies keep MS from progressing because your immune system is suppressed, but in my research...I also found that during pregnancy our ENDORPHINS are elevated. Hmmmm...that's what LDN does!

Off to watch a movie with the kids. Snuggle time!

Different States do have different rules....I was getting a phone script from a Doc in Wisconsin and he had to stop, because he couldn't prescribe meds, without seeing the patient. My present Doc is in Pennsylvania.

Lady, I have been on LDN since late August. Upon taking LDN, I had an immediate improvement in my tremors, and a little better balance. My gate improved pretty quickly, too, but after I started being on my feet more and more, my ability to walk well wavered a bit. I think I am regaining some muscle mass in my legs.

Marion, I am on it less than 3 weeks. I have a whole bunch of odd things coming and going with my body right now with the few diseases/disorders I have. I hope when all settles down the outcome will be a great one. If LDN helps more than one disease of mine, I am blessed. Increased leg muscle mass is great. Mine have become thinner over the years.

I had stopped smoking and now I seem to want to smoke again. Anyone have that problem? I am trying to weed out which symptom is attached to what problem. Quite an array to choose from.

Brenda, being pregnant was indeed a great time in my life. I felt wonderful. I didn't know your Endorphins raised during pregnancy. Hmm I must check that out.

Kitty, I may be like you. I may not be able to up the dosage to 4.5. I am med. sensitive, thin, spastic and need to sleep a lot, obviously. I will keep this dosage of 3.0 mg for a very long time. Maybe a year, before I try to boost it.
Lady

Another successful night on 4.5mg! And I feel good today, just some cramps.

Catching up on laundry, etc. The kids are back in school! It's so nice to have the energy to get the house in order. LDN is such a blessing.

Between my cycle starting today and residual steroids, my face looks like a teenager! My chin does anyway...

Almost time to pick up kids and take one to the doctor. Better run. Have a marvelous Monday!

Great Brenda,
It sounds like you will do well on the higher dosage of 4.5 mg.
Congratulations!
Lady

Hi All,

I have a question for all or anyone if you don't mind.

Do people feel that since they are doing well on one dosage, then they will feel even better with a higher dosage?

I mean, why do people up the dosage? What is the reason? I haven't a clue. Is there a dosage that we are supposed to be on, maybe even higher than 4.5?

Are we trying to get to a certain point with LDN, or number? And if we do raise the dosage, how do we know we have maxed out at the top?

Just curious what people know or think about this question.
Lady

According to Dr Bahari, no one should go higher than 5mg or lower than 1.75, but there are a few exceptions I suppose.

I think, from experience, that you should go as high, not going higher than 5mg, with which you are comfortable = your optimal doseage. Some are very comfortable with 3mg, for instance, without ever having to go higher.

In other words, there is no optimal high doseage for all. More is not necessarily better!!

We talked about this in the following link (read the page that comes up, and the next, I think....):

http://neurotalk.psychcentral.com/thread50240-47.html

I upp'd the dosage because I was hoping to get additional improvements. If I did get them, they were much more insidious than the one's I got in the beginning, but by 3 months on 4.5mg (9 on LDN, all told), I was down one EDSS point.

I do have to drop it down to 3.75 every late fall, till I adjust to the "change" in weather, but I always make my way back up to 4.5 mg (for no particular reason except that I don't have problems with it and it is said to be "optimal" . . .).

I had an infection I ignored for over a year (under a cap), which cause all sorts of other infections, so I spent most of 2007 on antibiotics. Coincidentally, I was measuring my liquid LDN wrong and only getting about 2.75 mg daily throughout that period. I wasn't doing so well, and I did have a very LONG (but not as severe as usual) attack . . . but as soon as I had the tooth removed and got back up to 4.5mg, everything stabilized again.

I guess I'll never know if it was the inadvertant reduction in dosage, the infection, or a combination of both that caused the flare . . . but I won't be making either mistake again. The good news is that my EDSS remained the same after that experience, and only minor "permanent" damage was caused from that ordeal.

I think we know if we have "maxed out" based on how we are feeling. If it makes NO difference (good or bad) to go to 4.5mg, then I would. If it has a positive effect, again I would stay at 4.5 mg. If it has a negative effect, I would give it a few months (unless it is TOO difficult), and drop back if I have to.

You can increase the dosage less then 1.5mg at a time by mixing the pill content with distilled water too . . .

Probably no point in going into all the options, but when you decide to go up, we'll walk you through any difficulties you might have.

Cherie

What Cherie said.

I too understood that Dr. Bihari recommended 4.5 as optimal for most and that 3.0 was good for those that struggled with the 4.5. I also understood that more than 4.5 is NOT good. I had not heard to cap it at 5.0, but that's good to know.

Feeling AWESOME today! I applaud all of the LDN "pioneers".