Hi Lady.., nice to see you here... I've missed you..

Knowing Larry, he probably told you to get 1.5mg increments so you could go up gradually, which is what a lot of peeps do now. I started at 3mgs 6 years ago and am now on 4.5mg for the last 4 yrs. 1.5 doesn't do much, so, as soon as your body accepts the 1.5 get on up to 3mg.

I can't wait to see how you do on it. Don't expect miracles, but, I think you will feel better and slow any further progression of this carpy disease.

Good luck, Sweety and report in, often.

Nice to "meet" you Lady!

Twink - I hope your dad starts to do better, and Sally...glad to hear that your setback was temporary.

I had a friend with MS call me today...she is ready to try out the LDN. She's really having a lot of troubles and I pray it helps her out.

I'm holding up...a little bit of trouble with my eye aching today and I'm fighting a cold. I'm stepping up the Vitamin C and staying indoors. We are having very unusual weather today...it's snowing! The kids are outside having snowball fights. We don't see this very often here.

Back to the unpacking.

Thanks for the Welcome and for wishing me luck on LDN.

Sally, yes you are correct. Larry gave me the start-up dosage info, 1.5 mg in three capsules to equal 4.5 mg. I can up the dosage as I get used to it.

He knows I have allergies to some foods, fillers and drugs. Also I have a sensitivity to many other drugs and the *other" crapola they add to preserve or make things taste better.

I sure wish they would go back to natural ingredients, like way back when. You know, when a Twinkie had real milk, cream, sugar, and vanilla. Not a list a mile long of things we never heard of and don't need, ya know? Just so it will last two months, instead of a week.

I missed you too Sally, and all your fun antics. You always cracked me up. Then there was the serious side, some sad issues, and also the caring and warmth you showed to all on the old forum.

Cherie, thank you too. We have spoken more recently. You are great with your links and answers to the many questions on a few of the boards. Where do you find the time? Great info and links btw.

Kitty, my Neuro is very conservative. She surprised the heck out of me. She had been thinking of TY or Blue goo but changed her mind. Typical woman. Lol I think she called a MS clinic director, in our area, and he said try it on me. Maybe they are doing their own little mini trial, who knows.

Hi mom2five, nice to meet you too. Is Utah a new place for you to live? You said you were unpacking.

Flutemaker, you are funny with that LDN story. My Neuro suggested it, but thought is was not legal to prescribe, so passed the buck to my PCP, IMO. Go figure. Love your boxer doggie.

Sally, you have a new puppy now?

I have a question or a hundred. You take the LDN at bedtime, but do you take it with food or drink? Also I go to bed at 2 to 3 am. Late to bed, late to rise, unless I have an early doctors appointment. I hate when that happens. Do I still take it at bedtime?

So confused and I tend to ramble. I must be getting antsy to start tonight. It just came in the mail.
Lady

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No, The signature is not my doggy...I still have my ShihTzu "Pal"...The white doggy, I used as my avatar at the "other place".

Take your LDN at bedtime, but before 3am. I'm a late to bedder too and I usually take mine at midnight.

I remember your ShihTzu Pal, and his picture. I'm glad he is still your best bud.

Thanks for answering so fast Sally. I will start tonight.

With food or water or any liquid?
Lady

I too have lots of allergies and sensitivities, and it's one of the reasons I went with Naltrexone compounded into a liquid (with distilled water and flavoring ONLY). Liquid is more hassle because it needs to be kept refrigerated, but it takes care of the "filler" problem. If you find you have problems with the LDN fillers, you can change to this method too.

Thank you, Lady. I seem to get involved in the same ole' topics most of the time, and I do a lot of research (and/or have personal experience) on those areas of interest. I keep links so that I don't need to re-research them . . . then I just wait for the convo to come up again. I cheat.

I read that we should take it with a glass of water, and I didn't for the first few weeks. I was getting nausea until I started DOWNING a glass of water with it. Once I adapted to the med, I stopped doing the water again (couple of months).

Cherie

Cherie,
Thank you!
My regular Pharmacy was going to give me the liquid reversion of LDN, but the flavoring in it I could not take. They had a few choices. They let me read the inserts. They use them for kids cough meds to taste better when doing liquid compounding for a doctors script. Like add a decongestant, expectorant, cough suppressant, etc., then the flavor or it would be yucky and kids wouldn't take it. Better than OTC for special kids disorders.

But they are not equipped to do the sterile compounding, with large labs and machines, that is necessary for power compounding to capsules. Most Pharmacies can do liquids. Mine never heard of LDN, so that scared me. They would be doing it by crushing a 50 mg tablet or two. I assume Skip buys powder in bulk. Same with liquid.

I will drink water or tea and a few cookies. Tee hee
Thanks,
Lady

You don't want to use a place that crushes the pills if you can avoid it. Skip uses the pure drug and adds some fillers to make up the capsules, but the fillers he uses are usually quite tolerable by most people.

My pharmacy buys the pure powder too, so I get no fillers at all in the liquid. He is a large drug "compounder", so he buys in bulk and has lots of experience with LDN. I would have gone with Skip, actually, but I am not organized enough to order in time (so that it is sure to cross the border/get through customs, etc. before my rx is up). As it is, my pharmacy is usually running around at the last minute, trying to accommodate my lack of planning.

The flavoring my guy uses is a combination of Tootie Fruity and Raspberry. We tried a couple of other flavors when he ran out, but they did not work as well with Naltrexone. The pharmacist said using the right flavoring might be as important as using the right fillers (not too slow release, etc.) . . . so, if you need to go the liquid route later, maybe your pharmacy can call my guy to get the right combo. I know that either of those (or both combined) works though ...

Cherie

i got lucky though, i caught on to the whole LDN idea early on after my DX. and tried it first before any of the crab drugs. it just made sense to me.
does LDN guarentee a stop to the illness? no. but neither do the crab drugs. does LDN guarentee a stop to exascerbations? no. but niether do the crab drugs.
does LDN guarentee anything? no. but niether do the crab drugs.
as long as its a matter of 6 of one-half dozen of another, why not make the 'another' one that i can actually afford and relisticly pay for?
i really am a stingy individual, but i dont see what good a medicine like copaxone is to someone who cant even pay for it.

did you want a new puppy sally? come on down to the shelter, i can set you up
this is my new puppy