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". :rolleyes: 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! :Ponder:

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

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.:cool:

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? :confused: I am trying to weed out which symptom is attached to what problem. Quite an array to choose from. :o

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. :o

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

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

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?:confused:

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. :eek: The good news is that my EDSS remained the same after that experience, and only minor "permanent" damage was caused from that ordeal. :cool:

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. :D

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". :Thanx:

I am the only person I know that actually chose LDN over the CRABs (never tried them), and that was probably only because my neuro didn't recommend them to me anyway. (He didn't recommend LDN either, but at that point I had nothing to lose ... )

People are often scorned or guilted into trying EVERY CRAB&T first. :rolleyes:

Cherie

make that two of us. i never tried the crab drugs either. theres no way i could have even if i had wanted to. they just cost too darn much money

Give me a way to get a script for LDN as my neuro won't -

My DD wouldn't try any of the shots either. She has been on LDN since DXed....I think 4 yrs ago.

She saw what I went through with first Avonex then Copaxone and told her Neuro...no way! She is doing well with LDN.:)

I forgot about your daughter having only ever tried LDN, Sally. I think if my daughter ends up with it, I'll be getting her on LDN too.

I'm glad LDN is working for you, Flutemaker. I guess there are more of us out there then I realized. :)

KarenMarie, you aren't likely to get a rx out of your neuro, unless he has his own independant practice, and he has other patients with experience on LDN. What about asking your GP? If you are really determined, we can give you some information to present ...

Cherie

Amen to that! I'd never heard of LDN before I came to this site and my neuro certainly wasn't going to recommend it! Every time I brought it up he looked at me like I'd asked if chocolate would be an appropriate med to take! :rolleyes: It was this site where I found out about LDN....and I will be forever grateful, too!

Sometimes I think they recommend the CRABs because they know we'll be back in for office visits fairly often because of the bad side effects. :mad:

There are some MS forums that do not like it much when people talk about LDN. :rolleyes: I get banned from those sites. :p

Cherie

not sure when my last update was but here goes...


i am still on 3mg a day haven't went to the 4.5mg dose yet.. still having no bad effects from it.. but the fatigue fighting effects may be wearing off for me.. or it could be my S.A.D issue.. what with all the snow/cold and dark clouds in the winter i just want to stay in bed all day and do nothing.. man i can't wait till spring.. ( i am pretty sure that is the problem because i am not tired.. just feeling down from the weather)

anypoop i will be moving up to 4.5mg after next week when i get a new Rx from my Dr so i only have to take 1 LDN pill a night and not 3... with all the meds i am on it would total 7 pills i have to swallow before bed if i bumped my dose up now.. with the 1.5mg LDN and all the other meds.. so meh whats another weeks wait to get the 4.5mg pills..

I get SAD too, but not till Feb. You'd think it would change dependant on the weather each year, but it doesn't seem to for me. The only time I didn't get it was when I lived in New Zealand/OZ for 5 yrs, and it should have happened in about Aug/Sept instead, but I never got it there at all. :confused: (It's cold, rainy and gray there too in the winter, at least in the places I was ....).

You might want to try to hang onto a handful of 1.5mg, if you can. That way if you find the 4.5mg difficult to adjust to, you can alternate nights at 4.5mg and 3.0mg (2x 1.5mg) for short while. Alternatively you could mix whatever dosage with distilled water, if necessary, then just take what you need nightly . . . (worst comes to worst).

I just had a hard time getting up to 4.5mg from 3.0mg, and was thankful I was on liquid and could adjust in small dosages . . .

Good luck!!

Cherie

Well, I'm off Tysabri (I had my last infusion on Nov 17) and starting LDN as soon as Skip's pharmacy ships it to me :). I was going to go without any MS med for a while but I changed my mind :rolleyes:. I'm really excited and hopeful about LDN:). I haven't had a chance to read through this thread yet but I will soon. Wish me luck!

Good luck, Joellelee!

I agree that you really don't have anything to lose at this point, if you had no intention of trying another DMD right away anyway. And, if it works for you, you have potentially lots to gain. :hug:

Did you have trouble getting an rx?

Cherie

Good Luck Joelle..:yahoo::hug:

Thanks Cherie :). I had no problem getting the scrip. My neuro prescribes LDN whenever anyone wants to try it. He faxed the scrip to Skip's pharmacy within an hour after my appointment. Skip's is only about a half an hour drive away from me so I should have it by Monday :D.

Well aren't you lucky! :) Did (s)he happen to mention whether (s)he had an opinion or direct experience with the use of LDN?

The neuro's out of our MS Research Center will rx it too . . . but they didn't when I asked 4 yrs ago.

Are you starting off with 1.5mg? Do you have any "permanent" symptoms you are hoping to alleviate, or are you trying it mostly to reduce relapses and progression?

Cherie

Honestly, Cherie, I'm hoping for any/or all of the above results :). I really do hope that it helps with the fatigue though. My neuro (he) mentioned the small study done on LDN and said that some of his patient's have had some encouraging results. I selfishly hope that I'm one of them :).

It's not selfish to want to feel better! That was one of the first things I noticed after I started taking LDN......the fatigue was nearly gone! I remember the first day I actually felt like doing something I overdid it big time and paid for it the next day but I didn't care....it felt so good to just feel like doing something! I've learned to pace myself but sometimes I still overdo it. :rolleyes:

I have permanent damage from a really bad flare from a couple of years ago (numb right hand and arm) and it hasn't done anything to relieve that. That would have been a miracle if it had! But, I'm very happy with the results I've had with it.

Go to 3.0 as soon as you feel ok about taking LDN. Call me if you panic ;)

:hug:

Hi Larry,
I sent you a PM but I guess you are off in cyberspace somewhere right now. Talk to you later.:hug:
Lady

I just received an e-mail, from a friend and she is taking 4AP and Kawalawala(sp) with her LDN. She just started, so the reports are not out yet....I'll let you know..:)

How many people here, boost their LDN with other supplements or meds and does it make things better for you?

Sally ~ I started using supplements a little over two years ago. They have helped me a LOT. I still use them with the LDN. The way I see it, since LDN is finally regulating my immune system...helping my immune system be strong is a good thing. I know that this is a controversial opinion, but I feel good about it - and my body agrees. ;)

I take Omegas, Vitamin C, Antioxidants, Magnesium, a Good multi-vitamin for women, live digestive enzymes, minerals, aloe vera, fulvic acid, amino acids and clean whey protein. (from Australia/New Zealand where the cattle are not injected with hormones, steroids or antibiotics)

I also do a gentle cellular cleanse on a regular basis.

Let's just say, I notice a difference on the days that I DON'T use my supplements. I feel sluggish and emotionally off on those days. :thud:

I don't take a lot of pills...most of what I take is in a liquid or is made into a delicious shake. My kids love them too. :D

Obviously, you touched on one of my passions. ;)

I know I have mentioned this before, but I am also a big believer in rebounding for exercise. It's a great way to circulate the lymphatic system and build strength. I use a balance bar so I don't fall. :trampoline:

i know theres a big thing about having your cancdida in check. supposedly an overgrowth can interfere with the LDN. so to help keep that in check i use coconut oil.(as opposed to cod fish liver oil) i do about a table spoons worth a day.
you certainly dont want to eat it straight so i melt it into a cup of coco or coffee.it naturally works on the candida, helps to boost immune system and it adds a nice nutty flavor too

http://products.mercola.com/coconut-oil/

I love coconut oil too! I forgot about that one. So yummy in my morning shake. :)

the coconut oil and ive been looking into the colloidial silver too

Dr. Sullivan gave me a script for the 4AP but I couldn't afford it along with the LDN, too. He said it would help me get to the 4.5 mg. dosage (alleviate the spasticity). I'll just stay at the 3 mg for now, I guess.

I like all of what you peeps are doing, except the C.Silver...not so sure about that. The 4-AP is totally unnecessary as far as I'm concerned Kelly. The Kawalwala is one of those super cure for all things that is a too good to be true thingy. I'd avoid it.

I say keep doing what you're all doing, if it's working for you. Just watch out for quackery products. They're usually expensive and can be dangerous.

:grouphug:

My LDN finally came in the mail today :D. I'll take my first dose tonight. I think I might be getting my hopes too high. I tend to do that :). Maybe this time it will have been for a good reason :).

Hope it works for you Joelle!

Much good luck, Joelle. Give it time..:hug:

I take LDN 3.0 with 100 MG B1, sometimes a Super B Complex instead (had 100MG of B1 though), and possibly a 400 or 500 MG Magnesium.

The only thing every day is 100 MG B1 and 3.0 MG LDN

I also have a salad as a meal, usually 5 of 7 days, that really seems to help keep things moving :)


:D