Great to see this place! HI!

[Guest guest]

Hi everyone. I'm LarryGC on MSWatch, and I have a group,

MSWatchers (MSWatchers/) for people I

meet on MSWatch or elsewhere who are dealing with MS without ABC/R

drugs. I found out about LDN back in October, on MSWatch, and have

chatted with a few others who are taking it.

I asked my PCP and 2 Neuros how I go about getting LDN. The last

visit to one of the neuros, he said that if I find out

the " PROTOCOL " , he'll let me try it.

Does anyone know how I find out the " PROTOCOL " for me?

I have some questions about LDN also... I'll put that in another

message.

I was just talking with someone at work about LDN and went to the

website while talking with him. When I saw you started a group

I told him I had to go so I could join here. Nice to see!

-- LarryGC

[Guest guest]

HI Larry,

No I have not been to MSwatch for years. I actually don't spend much time at

most of those official ms websites because I am very disappointed with the

response that I have received from people when I try to tell them about the

LDN. Oh well, one can only do so much I spose. I have an idea for you.

Please tell your doc to call Dr. Bihari direct. Should not cost anything

that way. I heard that he will never refuse a call from an MD wondering

about stuff like that. He can get the facts right from the horses mouth so

to speak. Not sure about your question about taking it at 6pm and sleeping

until 11:00. I thought I read where it works while you are sleeping and

takes about 6 hours to start working. I am asking anyone else reading this

to answer this question as well.

There are severeal here that are Dr. Bihari patients and perhaps they would

be kind enough to ask this question on their next visit with him? Joyce.

>From: " LarryGC " <larrygc@...>

> " wkendz 32 " <wkendz32@...>

>Subject: Re: [low dose naltrexone] Great to see this place! HI!

>Date: Sun, 6 Apr 2003 15:15:31 -0400

>

>Thanks Joyce. You're not on MSWatch are you?

>

>I know the history of LDN and all that... my neuros said they wouldn't let

>me

>try it... except the last visit I went to he said if I found out the

> " protocol " , he'd prescribe it for me. I told him 3 or 4.5 mg a day before

>bedtime, but he wanted me to get an OFFICIAL " protocol " from the doctor

>himself. He told me it would cost $400 for a visit with him, suggested

>calling

>up on the phone and saying I'm from out of town. I have the phone numbers,

>but

>as yet haven't called. I'm procrastinating??? I don't know. I do work

>12-8am

>though... so I need to find out if taking it at 6pm and only sleeping til

>11pm

>will help it work, or does it HAVE to be taken between 9pm and 3am,

>regardless

>of sleeping habits. Those are questions I need answered first.

>

>I've been spending the last 2 months on my allergies, so I put LDN info on

>hold

>for a while. I'm getting ready to start seeking LDN, and am glad I found

>this

>group.. I think... not too sure what's going on with this Bill person,

>seems

>like I only seem 1/2 these discussions.

>

>

>-- LarryGC moderator MSWatchers

>

>

>

>----- Original Message -----

>From: " wkendz 32 " <wkendz32@...>

><larrygc@...>

>Sent: Friday, April 04, 2003 13:00

>Subject: Re: [low dose naltrexone] Great to see this place! HI!

>

>

> > Hi there Larry,

> > Welcome to this group. As far as a protocol for the LDN. Not a lot known

> > other then that the ideal daily doseage is 4.5mg according to what Dr.

> > Bihari in New York. I do beleive this is after quite a bit of

>experimenting

> > over time. There has not been a clinical trial for it and probably never

> > will be for the use with MS. You see Naltrexone has been FDA approved

>for

> > close to 20 years now and we all know about patents and that being the

>only

> > reason drug companies will do clinical trials. They get back the

>millions

> > that they shell out if they get the patent on the drug treatment. No

>money

> > to be made off this drug. Catch 22 for all of us I'd say. We are all on

>our

> > own here experimenting and reporting to each other. I personally take

>4.5 mg

> > daily. Some have experiencing trouble sleeping for the first couple days

>and

> > others like myself have not really had much trouble with it at all. I've

> > been told that there is absolutely no risk with a doseage this small. My

>doc

> > told me as far as he is concerned it it almost homeopathic dose so he

>has no

> > problem prescribing it for me. He is not a neuro..they are not willing,

>it

> > seems to give all this a try for us so you must find a doc who will work

> > with you. Good luck to you. Joyce.

> >

>

>

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[Guest guest]

Hi there,

So kind of you to take the time to try and get the answer for this from the

good Dr. Bihari for one of your fellow LDN users. I think it was said that

he wondered if he took it at 6:00 and slept until 11:00 would it still work

for him. I'd just ask the question that way and see what he says. If he says

that you must sleep for 6 hours for it to start working...well then we have

our answer. Not sure if that was the exact question or not but I'm sure if

not we will get a better one from the originator of the question...sorry but

memory fails me as to his name...think LDN will bring my memory

back???...lol. Joyce

>From: Msldninfo@...

>wkendz32@...

>Subject: Re: [low dose naltrexone] Great to see this place! HI!

>Date: Sun, 6 Apr 2003 18:41:28 EDT

>

>Is the question can you take it at 11, I think that he will say the best

>time

>to take it is between 9 and 2 am. That's what I read let me know if that

>is

>the question and if I get a chance to ever get there and remember I'll ask

>him.

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[Guest guest]

Hi!

I work 12-8am. I currently sleep from 6 or 7pm til 11pm, and then for 45 mins

to an hour around 5:30am. I'm wondering what would be the 'protocol' for me?

The only sleep I get is between 7 and 11pm, so when would I take LDN?

And if LDN can cause INSOMNIA! WHEN would I sleep? LOL

----- Original Message -----

From: " wkendz 32 " <wkendz32@...>

<Msldninfo@...>

Cc: <low dose naltrexone >

Sent: Sunday, April 06, 2003 18:53

Subject: Re: [low dose naltrexone] Great to see this place! HI!

> Hi there,

> So kind of you to take the time to try and get the answer for this from the

> good Dr. Bihari for one of your fellow LDN users. I think it was said that

> he wondered if he took it at 6:00 and slept until 11:00 would it still work

> for him. I'd just ask the question that way and see what he says. If he says

> that you must sleep for 6 hours for it to start working...well then we have

> our answer. Not sure if that was the exact question or not but I'm sure if

> not we will get a better one from the originator of the question...sorry but

> memory fails me as to his name...think LDN will bring my memory

> back???...lol. Joyce

>

>

>

>

>

>

> >From: Msldninfo@...

> >wkendz32@...

> >Subject: Re: [low dose naltrexone] Great to see this place! HI!

> >Date: Sun, 6 Apr 2003 18:41:28 EDT

> >

> >Is the question can you take it at 11, I think that he will say the best

> >time

> >to take it is between 9 and 2 am. That's what I read let me know if that

> >is

> >the question and if I get a chance to ever get there and remember I'll ask

> >him.