Starting LDN soon-getting excited

A board to discuss Low Dose Naltrexone (LDN) as a treatment for Multiple Sclerosis

Starting LDN soon-getting excited

Postby flora68 » Sat Jan 29, 2005 11:23 am

I've been ready to get on LDN for quite awhile now, and it looks like it's finally going to happen :D .

After three consecutive, disastrous, near death experiences on Avonex, and many permanent, tender lumps, dents, and more MS symptoms from Copaxone, a few months ago I decided to try LDN. But my family doc said that while it sounded safe, I had to double-check with my neuro first to make absolutely sure there's no weird danger or downside to taking LDN as prescribed.

Well, I saw the neuro last month and he said there's no danger in LDN, but he stated flatly that it isn't meant to be taken alone. (I totally disagree on that point, but let it ride.)

He was really enthusiastic about Tysabri. Said it would be billed at $1,800 per treatment. Since my neuro exam showed further worsening, he talked me into trying Tysabri first, instead of LDN, assuming insurance would cover it.

Well, luckily I found out yesterday that Tysabri won't be financially or ethically feasible for me, because the Tysabri would be billed to my insurance at $4,000 per treatment (or basically $1,000 per week!).

I told them nicely that they can keep their (obscenely expensive) Tysabri, and hung up.

I'm going to take LDN.

So day after tomorrow (Monday) I'll be asking my family doc to write the prescription for LDN, and we'll talk to our local compounding pharmacy (People's Pharmacy) to see if they really know how to properly compound LDN. If they aren't up to speed on the importannce of not using a slow release binder, etc., I'll use Skip's or one of the other tried-and-true LDN sources.

Anyway, I'm really glad it worked out this way. I didn't want to be experimented on with weird, untried stuff (Tysabri) anyway. My family doc and I are convinced that LDN, at the very least, is harmless, and since I can't take narcotics anyway, why not?

So I'm actually getting excited about starting LDN :) . I've read everything I can find on it, and I even registered for the LDN Conference in NYC in June.

Any tips or well wishes from LDN users would be most welcome.
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Postby adjanimals » Sat Jan 29, 2005 3:16 pm

Good Luck flora68,
I've been on it since October at 4.5 mg.
Haven't seen the big dramatics others state. But overall I am feeling better than I did six months ago. Less depressed, still use a scooter but am able to walk with my walker better. Before I was lucky if I could do 3 feet. Now I can push it to about 10 feet. Less fatigue also, sleeping better. Still have some leg tremors but that depends on how my foot is positioned. Some leg spasms but mostly if I have been lying down to long. The bladder and bowel are much better. Just a quick history of my use.
Like I said, Good Luck to you, don't get discouraged, give it time. And by all meens, definitely make sure they don't use slow release Naltrexone or filler when compounding.
ADJ
I do take it you know the LDN site.
www.lowdosenaltrexone.org
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Thanks!

Postby flora68 » Sat Jan 29, 2005 7:14 pm

Thanks, ADJ! Good luck to you, too.
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Update

Postby flora68 » Mon Feb 07, 2005 5:23 pm

I got my prescription for LDN today! :D
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early days on LDN

Postby dizzee » Tue Feb 08, 2005 12:27 pm

been on LDN for 5 days now, never very sure about my symptoms: is numbness & tingling coz I don't exercise enough? anyway, my slightly dodgy eyes don't seem to be any different but I feel like I have more energy and life is pretty sweet. whether this is pure placebo effect so early on is pretty impossible to say but the way I see it I'm feeling good, perhaps that's just from feeling a sense of achievement in actually managing to get my hands on the stuff.

feeling better whatever the reason
all the best, flora
daisy

would love to hear your experiences
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Postby Arron » Tue Feb 08, 2005 12:51 pm

great to hear, wishing you continued good health :)
Disclaimer: Any information you find on this site should not be considered medical advice. All decisions should be made with the consent of your doctor, otherwise you are at your own risk.
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Re: early days on LDN

Postby flora68 » Tue Feb 08, 2005 2:39 pm

dizzee wrote:........feeling better whatever the reason
all the best, flora
daisy

would love to hear your experiences



All the Best to you, too, Daisy :)
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Placebo effect - excessive smiling!

Postby flora68 » Mon Feb 21, 2005 8:37 pm

:D Just wanted to let ya'll know the good news. I'm finally actually taking LDN! :D

My wonderful, very smart, compassionate, reasonable family doc wrote me the prescription a couple of weeks ago.

She'd just had one very reasonable condition: she made me go see my neurologist first to ask if he knew of anything dangerous about LDN. She was very familiar with naltrexone (in 50mg and larger doses), and couldn't imagine it doing any harm at 4.5mg anyway, but she wanted to be sure, so I went to see Dr. Smiling Bowtie, crackerjack neurologist and cutting-edge MS doc.

When I asked him if he knew of anything dangerous about LDN, all he said was "Well, no.. it's not dangerous" (he sorta mumbled that first part) "....but LDN is a complimentary treatment" he said, " not something to be used alone."

Well, I of course I didn't agree, but I didn't argue either. No point. He's a huge Tysabri fan, involved in the trials I think, and he told me that he can't imagine recommending any of the CRAB's now that Tysabri is here. (Can't disagree with that last part, but did I mention that he's billing $4K per Tysabri infusion 8O ?)

Anyway, I reported back to my good old family doc that Dr. Bowtie could come up with no actual dangers involved with LDN use (I told her the rest of what he said, too), and she wrote me the 'script and handed it to me right then and there on the spot, just as she promised. :D Woo-hoo! Finally!

That's when the placebo effect began; excessive smiling. As soon as she wrote the 'script. Didn't stop smiling until I was sound asleep, if then. :D

She's starting me out on 3mg of LDN nightly for the first month, and assuming that there are no problems, she'll write it for 4.5mg after that. Which is just what I wanted anyway.

As it happens, the website of "The Compounder Pharmacy" wi$ely included a convenient, printable prescription form to use for docs who've never written a 'script for LDN, so my LDN comes from them.

And, bless their hearts and USPO Priority Mail, it arrived just as promised only two days later.

BTW, here's the link to their site if you're interested and haven't seen it.
http://thecompounder.com/OrderLDN.html

Anyway, in terms of my being on LDN, it's been about 10 days (nights) so far, and I guess I don't have anything to report, objectively speaking. Certainly nothing adverse; I feel about the same as before, maybe a little better, physically. But mainly I'm happier, more relaxed. Even sleeping a little better.

But , like I said above, it's definitely a placebo effect in this case, manefested more by excessive smiling :D than anything else, considering that it started two days before I received my LDN in the mail.

I hate to repeat myself, but this is such a relief...:D Woo-hoo!
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woo hoo

Postby dizzee » Tue Feb 22, 2005 2:32 am

good going :D in the 'script department
best thoughts for the future

Like you, I kind of don't care whether it's the power of my mind or,
active endorphin action. One way or another, I feel better than I have in ages

daisy
flora, you've got a nice sounding doc

three cheers for senseless smiling - long may it continue :)
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Postby flora68 » Tue Feb 22, 2005 10:20 am

Thanks, Daisy!

And you're right, my doc is nice...the nicest person I know, really. And I've been blessed with some wonderfully kind people in my life.

Keep on smiling. :D
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