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Re: talk - i'm listening

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I too was walking without a cane the 2nd or 3rd day I tried LDN. Have not had such a great day since, and it has been almost 3 months. I was quite dissapointed, but I believe maybe it was the placebo effect. I still feel great compared to where I was before LDN . I believe that if my body could work that way, even for a day, it is possible to happen again. I don't think you triggered an attack, are you worse than before ldn? I felt terrible this weekend,and then we had a rain storm. Maybe it's the weather? We will get it right someday soon! Kiki

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I don't think it was placebo effect. I had one good afternoon, then

pooey. I am now much worse than I have ever been. If I had a

wheelchair I would use it. I am mostly too week to stand, let alone

walk. My son was lying on the floor and I could not lift my feet over

his legs. MSClinic wants me to wait till Monday. Oy.

Do a pubmed search with the terms naltrexone and MS. Or naltrexone

and autism.

This situation must not continue. Some are playing with fire and they

will get burned.

-Sullivan

> I too was walking without a cane the 2nd or 3rd day I tried

LDN. Have

> not had such a great day since, and it has been almost 3 months. I

was quite

> dissapointed, but I believe maybe it was the placebo effect. I

still feel great

> compared to where I was before LDN . I believe that if my body

could work

> that way, even for a day, it is possible to happen again. I don't

think you

> triggered an attack, are you worse than before ldn? I felt terrible

this

> weekend,and then we had a rain storm. Maybe it's the weather? We

will get it right

> someday

soon!

Kiki

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Wow Chris. Sorry to hear that. When did you start? It's only been a few days, hasn't it? Did you stop already?

Maybe you've scared yourself into feeling this way? The first few weeks are tough in the head games department. When I first started it, someone put a thought into my head and I drove myself nuts for a few days thinking I was doing the wrong thing and doubting myself. The fear factor is the worst part of it.

Is this only 4 pills so far? All I remember from the first 8 days is from my wife's observation, sleeping more peacefully than ever before. My RLS didn't start to go away until day 9, and my bladder didn't feel or act any different until day 11. Day 5 and 6 though I was on my feet most of the day, and I remember it wasn't a problem except for running to the men's room.

What dose are you taking?

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

From: jchrissullivan

low dose naltrexone

Sent: Tuesday, September 30, 2003 20:01

Subject: [low dose naltrexone] Re: talk - i'm listening

I don't think it was placebo effect. I had one good afternoon, thenpooey. I am now much worse than I have ever been. If I had a wheelchair I would use it. I am mostly too week to stand, let alonewalk. My son was lying on the floor and I could not lift my feet overhis legs. MSClinic wants me to wait till Monday. Oy.Do a pubmed search with the terms naltrexone and MS. Or naltrexoneand autism.This situation must not continue. Some are playing with fire and theywill get burned.

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In my case I am SPMS and was not walking very well to start with,

and was already on disability. I have not been able to work since

May 2002. That's why I have time for all this research. I have been

depressed but not scared.

I am continuing LDN therapy.

I am trying a nightly dose of 1.5mg. I am (for now) using the liquid

form as I have not enlisted a pharmacist yet.

I think I blockaded scarce endorphins or enkephalins which put them

below my personal threshold for good health.

I am sorry if I disturbed anyone: I am the one who is disturbed.

I *am* driving myself nuts but mostly at night after a day of trying

to feel better.

Not nearly as slow or weak this morning.

Thanks you guys.

-Sullivan

--- In low dose naltrexone , " LarryGC " <larrygc@s...>

wrote:

> Wow Chris. Sorry to hear that. When did you start? It's only

been a few days, hasn't it? Did you stop already?

>

> Maybe you've scared yourself into feeling this way? The first few

weeks are tough in the head games department. When I first started

it, someone put a thought into my head and I drove myself nuts for a

few days thinking I was doing the wrong thing and doubting myself.

The fear factor is the worst part of it.

>

> Is this only 4 pills so far? All I remember from the first 8 days

is from my wife's observation, sleeping more peacefully than ever

before. My RLS didn't start to go away until day 9, and my bladder

didn't feel or act any different until day 11. Day 5 and 6 though I

was on my feet most of the day, and I remember it wasn't a problem

except for running to the men's room.

>

>

> What dose are you taking?

>

>

>

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

> From: jchrissullivan

> low dose naltrexone

> Sent: Tuesday, September 30, 2003 20:01

> Subject: [low dose naltrexone] Re: talk - i'm listening

>

>

> I don't think it was placebo effect. I had one good afternoon,

then

> pooey. I am now much worse than I have ever been. If I had a

> wheelchair I would use it. I am mostly too week to stand, let

alone

> walk. My son was lying on the floor and I could not lift my feet

over

> his legs. MSClinic wants me to wait till Monday. Oy.

>

> Do a pubmed search with the terms naltrexone and MS. Or

naltrexone

> and autism.

>

> This situation must not continue. Some are playing with fire and

they

> will get burned.

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Hi

I am spms, now, as well and ldn does not work as much of it's magic

on us, as it does on rrmsers...but hang in there for the long run.

The benefits will show after awhile....I know how frustrating it can

be.

I didn't always feel that less was better, but I am on 2mg and it

seems better to me. I think you are right to lower your dose for

now. See how it goes. take the 1.5 or 1.75mg for a month, before

changing. Every day is different for me, like you, but some of it

has to do with attitude and weather. We can't change the weather,

but we can change our attitude. Think positive and don't wait for

miracles....I think ldn does it's intended job, to stop progression,

in the long run.

My best wishes for you (we'll beat it!!)

Love, Sally

<chris_sullivan@s...> wrote:

> In my case I am SPMS and was not walking very well to start with,

> and was already on disability. I have not been able to work since

> May 2002. That's why I have time for all this research. I have

been depressed but not scared.

> I am continuing LDN therapy.

I am trying a nightly dose of 1.5mg. I am (for now) using the

liquid form as I have not enlisted a pharmacist yet.

> I think I blockaded scarce endorphins or enkephalins which put them

> below my personal threshold for good health.

> I am sorry if I disturbed anyone: I am the one who is disturbed.

> I *am* driving myself nuts but mostly at night after a day of

trying to feel better.

> Not nearly as slow or weak this morning

> Thanks you guys.

> -Sullivan

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----- Original Message ----- From: Sullivan

Yes we are treating MS, not IBS, but it's the same drug and the

same dose range and Pain Therapeutics just wanted to make

*sure* it worked for most people. Can you pass him the message

about weight dependence?

Maybe that's why diet works: it makes our bodies need less endorphin,

which we know we do have less of than normal people.

-Sullivan

-----Original Message-----From: LarryGC [mailto:larrygc@...]Sent: October 1, 2003 2:53 PMjchrissullivanSubject: Re: [low dose naltrexone] Re: talk - i'm listening

Only 1.5? I thought it's supposed to be 1.75 to 5 mg range? Maybe you're just teasing your body.

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