Re: Re: Will we need LDN for the rest of our lives??

[Guest guest]

This is my story, so far. I posted it last week to MSWatchers....

--------------

7/1/2003:

If LDN is a farce, or 'just a placebo effect', then this is a better illusion

than LSD could give! First of all I'm in the low dose naltrexone group with over

230 members, all LDN interests are there, cancer, hiv, fibro, lupus and many

interested in find out more. I'm also in another group, Support_LDN, and there

are 84 members there, that group is for PWMS using LDN.

I've been journaling my experiences the last 75 days as they've been happing in

my MSWatchers group. Most people taking LDN are reporting similar experiences.

I know of 1 person who stopped the LDN, he was ALSO taking Rebif, Allegra and

about 6 other pills. He didn't give up everything else when he started LDN, so

he had problems and gave up the LDN. I'm going to my neuro in a few weeks and

have been compiling a list.

First night, my wife thought I was sleeping more peacefully. As the weeks have

gone on, she's confirmed I have been sleeping more peacefully since the first

night. She knows me 22 years, she says I have never slept this good in all

that time.

First week, my RLS disappeared, gone, never returned. 11 days after I started

I went for 4 hours without peeing, and noticed. I was going 3 or 4 times in a

4 hour period, each time with full urgency. Haven't had urgency or frequency

since. I 'accidentally' stretched my legs one day and I didn't jerk all over

the place. I've been stretching them and exercising them since. Then I

noticed while I was drinking a glass of water that my T5 wasn't spasming. It

wasn't an all the time thing, but I realized it hadn't happened since before

starting the LDN. I keep trying to see if it will happen, I'm drinking more

now since I can go longer. GONE. That was a biggie, it would choke me and I'd

gasp for air for 20-30 seconds at a clip. A week after I started the LDN we

got a 5 speed stick for my daughter to learn standard shift, I tried it and my

legs were bouncing, couldn't clutch, wasn't going to drive the car. But when

my RLS seemed better I tried again and didn't have a problem. I've been

driving the 5 speed ever since.. my daughter learned, but we'd rather her use

an automatic, so she has my old car and I have the 5 speed. And then last

week I had the toe curling adventure.

Some people have reported feeling happier, as do I, but I've always been a

happy guy anyway, so I don't know if it's the LDN, or just because I'm not tied

to bathroom stops and kicking/jerking/bouncing/tingling legs any more. I don't

know how it's helping my fatigue but I've been working some 18 hour shifts.

And 6/12 I went to a Bluegrass Festival for the day/night. I got there 5PM,

after I parked my car for the night, I was out talking around until 4am. The

grounds were muddy, and I was either walking through squishy mud or standing

around. I sat 4 times for a few minutes, and 3 times for 1/2 hr or so to watch

one of the groups from the seats, but mostly on my feet. Only difficulty I had

was about 2AM after standing in one spot for over an hour, from about 4 inches

above my left knee for about 3 inches below it felt like my knee was locked in

position (straight). When I realized it, I slowly moved around and worked it

out and it went away. I had had an accident on 5/23 in my home.. I JUST got

home from my chiropractor, was downstairs in my computer room for 20 minutes

and the door bell rang. I went up the stairs and the carpet runner staples

must have come out when I walked down them earlier, my right foot caught under

it, it came up and tripped me, DOWN, SMASH, BANG on Both knees! OUCH OUCH

OUCH! Except for a few feelings of sharp pain on top of my knee cap

sporadically, the only other problem I had was what I just described above.

------------------

7/9/2003:

I was away camping from 7/4-8, high heat, thunder storms and mosquitos! Once I

had to go into the van and start it up for some a/c. We have a screen tent up

there so I've been able to stay out of mosquito hour and haven't noticed any

bites. And today it was raining and I had to get out of the car. I got quite

wet in the 2 minutes I was out there and for the first time I didn't get spasms

and chills running down my body like the last few times I got rained on in the

past year.

This morning I went for my 3 month LDN follow up with my MS specialist neuro.

I don't think I EVER saw him smile and when I told him of my progress he seemed

genuinely happy about it. The last thing he said was something like I'm the

ONLY patient of his that he let try LDN that's still on it, all his other

patients gave it up after a few weeks. Who knows what they were doing wrong,

I'd love to be able to talk to each of them and find out what their experience

was.

I'm working til 8am this morning, then I'm going back for 6pm until 11am

tomorrow. Saturday I'm going back upstate camping, I come home the 15th,

return my rented cargo van, and then head back up to be in a tent from 7/16-20

for the Grey Fox Bluegrass Festival.... in March I was wondering if I was

going to be able to make 7/17-20, even just the drive there with BU/F would

have been nearly impossible, or at least dry. Nowdays I'm getting 4-9 hours

and no urgency.

Will I need LDN for the rest of my life? Perhaps... but if it keeps me at this

level of functionality, why would I want to stop? What I like about LDN is all

those other diseases that it can help... if prostate cancer WAS in my future,

perhaps it is NOT, now.

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

From: " Sally " <salpal@...>

<low dose naltrexone >

Sent: Thursday, July 10, 2003 01:34

Subject: [low dose naltrexone] Re: Will we need LDN for the rest of our lives??

> WOW GUY, WHAT A TESTAMONIAL FOR LDN AND YOU......I AM GOING TO POST

> YOUR LETTER IN A CHAT ROOM (WITHOUT YOUR NAME OF COURSE). THE

> MODERATOR IS DOWN ON LDN FOR SOME REASON....AND I THINK THIS WILL

> OPEN EYES.....THANKS AND CONGRATS, SALLY

>

[Guest guest]

That is great that you are doing so good. I thought of that too, look at

all the cancers that we might be keeping away by being on the LDN. Dr.

Bihari and his wife both have a lot of cancer on both sides of their

families, so they both take LDN as a maitenance to keep the cancer away.

they have been doing this for about 12 years.

I hope that I am doing as good as you when I have been on the LDN for 3

months. I have been on it for 1 month so far. but I think that I will

continue to improve because I am feeling pretty normal in a lot of ways. I

am on Tegretol for my muscle spasms. A couple of times, I realized that I

have been forgetting to take the tegretol. I use to forget and then I would

have uncontrolable spasms so I knew right away that I needed the pill. But

lately when I would forget, I wouldn't realize that I forgot until it was

time to take the next one. My goal is to get rid of the tegretol or at

least not to take it as much. That in turn should help my balance problem.

Keep up the progress. I wish you the best.

Marie

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

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

" LDN group " <low dose naltrexone >

Sent: Thursday, July 10, 2003 2:11 AM

Subject: Re: [low dose naltrexone] Re: Will we need LDN for the rest of our

lives??

> This is my story, so far. I posted it last week to MSWatchers....

>

>

> --------------

>

> 7/1/2003:

>

>

> If LDN is a farce, or 'just a placebo effect', then this is a better

illusion

> than LSD could give! First of all I'm in the low dose naltrexone group with

over

> 230 members, all LDN interests are there, cancer, hiv, fibro, lupus and

many

> interested in find out more. I'm also in another group, Support_LDN, and

there

> are 84 members there, that group is for PWMS using LDN.

>

> I've been journaling my experiences the last 75 days as they've been

happing in

> my MSWatchers group. Most people taking LDN are reporting similar

experiences.

> I know of 1 person who stopped the LDN, he was ALSO taking Rebif, Allegra

and

> about 6 other pills. He didn't give up everything else when he started

LDN, so

> he had problems and gave up the LDN. I'm going to my neuro in a few weeks

and

> have been compiling a list.

>

> First night, my wife thought I was sleeping more peacefully. As the weeks

have

> gone on, she's confirmed I have been sleeping more peacefully since the

first

> night. She knows me 22 years, she says I have never slept this good in

all

> that time.

>

> First week, my RLS disappeared, gone, never returned. 11 days after I

started

> I went for 4 hours without peeing, and noticed. I was going 3 or 4 times

in a

> 4 hour period, each time with full urgency. Haven't had urgency or

frequency

> since. I 'accidentally' stretched my legs one day and I didn't jerk all

over

> the place. I've been stretching them and exercising them since. Then I

> noticed while I was drinking a glass of water that my T5 wasn't spasming.

It

> wasn't an all the time thing, but I realized it hadn't happened since

before

> starting the LDN. I keep trying to see if it will happen, I'm drinking

more

> now since I can go longer. GONE. That was a biggie, it would choke me

and I'd

> gasp for air for 20-30 seconds at a clip. A week after I started the LDN

we

> got a 5 speed stick for my daughter to learn standard shift, I tried it

and my

> legs were bouncing, couldn't clutch, wasn't going to drive the car. But

when

> my RLS seemed better I tried again and didn't have a problem. I've been

> driving the 5 speed ever since.. my daughter learned, but we'd rather her

use

> an automatic, so she has my old car and I have the 5 speed. And then

last

> week I had the toe curling adventure.

>

> Some people have reported feeling happier, as do I, but I've always been a

> happy guy anyway, so I don't know if it's the LDN, or just because I'm not

tied

> to bathroom stops and kicking/jerking/bouncing/tingling legs any more. I

don't

> know how it's helping my fatigue but I've been working some 18 hour

shifts.

> And 6/12 I went to a Bluegrass Festival for the day/night. I got there

5PM,

> after I parked my car for the night, I was out talking around until 4am.

The

> grounds were muddy, and I was either walking through squishy mud or

standing

> around. I sat 4 times for a few minutes, and 3 times for 1/2 hr or so to

watch

> one of the groups from the seats, but mostly on my feet. Only difficulty

I had

> was about 2AM after standing in one spot for over an hour, from about 4

inches

> above my left knee for about 3 inches below it felt like my knee was

locked in

> position (straight). When I realized it, I slowly moved around and worked

it

> out and it went away. I had had an accident on 5/23 in my home.. I JUST

got

> home from my chiropractor, was downstairs in my computer room for 20

minutes

> and the door bell rang. I went up the stairs and the carpet runner

staples

> must have come out when I walked down them earlier, my right foot caught

under

> it, it came up and tripped me, DOWN, SMASH, BANG on Both knees! OUCH OUCH

> OUCH! Except for a few feelings of sharp pain on top of my knee cap

> sporadically, the only other problem I had was what I just described

above.

>

> ------------------

>

> 7/9/2003:

>

> I was away camping from 7/4-8, high heat, thunder storms and mosquitos!

Once I

> had to go into the van and start it up for some a/c. We have a screen

tent up

> there so I've been able to stay out of mosquito hour and haven't noticed

any

> bites. And today it was raining and I had to get out of the car. I got

quite

> wet in the 2 minutes I was out there and for the first time I didn't get

spasms

> and chills running down my body like the last few times I got rained on in

the

> past year.

>

> This morning I went for my 3 month LDN follow up with my MS specialist

neuro.

> I don't think I EVER saw him smile and when I told him of my progress he

seemed

> genuinely happy about it. The last thing he said was something like I'm

the

> ONLY patient of his that he let try LDN that's still on it, all his other

> patients gave it up after a few weeks. Who knows what they were doing

wrong,

> I'd love to be able to talk to each of them and find out what their

experience

> was.

>

> I'm working til 8am this morning, then I'm going back for 6pm until 11am

> tomorrow. Saturday I'm going back upstate camping, I come home the 15th,

> return my rented cargo van, and then head back up to be in a tent from

7/16-20

> for the Grey Fox Bluegrass Festival.... in March I was wondering if I

was

> going to be able to make 7/17-20, even just the drive there with BU/F

would

> have been nearly impossible, or at least dry. Nowdays I'm getting 4-9

hours

> and no urgency.

>

> Will I need LDN for the rest of my life? Perhaps... but if it keeps me at

this

> level of functionality, why would I want to stop? What I like about LDN

is all

> those other diseases that it can help... if prostate cancer WAS in my

future,

> perhaps it is NOT, now.

>

>

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

> From: " Sally " <salpal@...>

> <low dose naltrexone >

> Sent: Thursday, July 10, 2003 01:34

> Subject: [low dose naltrexone] Re: Will we need LDN for the rest of our

lives??

>

>

> > WOW GUY, WHAT A TESTAMONIAL FOR LDN AND YOU......I AM GOING TO POST

> > YOUR LETTER IN A CHAT ROOM (WITHOUT YOUR NAME OF COURSE). THE

> > MODERATOR IS DOWN ON LDN FOR SOME REASON....AND I THINK THIS WILL

> > OPEN EYES.....THANKS AND CONGRATS, SALLY

> >

>

>

>

>

>

[Guest guest]

I hope you can give it up. I pretty much stopped taking all vitamins and

minerals after I started noticing changes after the first week or so. I wanted

to make sure it was doing everything it was or would do, all by itself. I have

been taking Vitamin B1 the last week though... since I'm camping all month in

mosquitoland found out which B is was they didn't like.. tastes horrible, can't

swallow it quick enough... now I know why mosquitos don't like it either.

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

From: " Marie Deady " <mardea@...>

" LDN group " <low dose naltrexone >; " LarryGC "

<larrygc@...>

Sent: Thursday, July 10, 2003 07:03

Subject: Re: [low dose naltrexone] Re: Will we need LDN for the rest of our

lives??

> That is great that you are doing so good. I thought of that too, look at

> all the cancers that we might be keeping away by being on the LDN. Dr.

> Bihari and his wife both have a lot of cancer on both sides of their

> families, so they both take LDN as a maitenance to keep the cancer away.

> they have been doing this for about 12 years.

> I hope that I am doing as good as you when I have been on the LDN for 3

> months. I have been on it for 1 month so far. but I think that I will

> continue to improve because I am feeling pretty normal in a lot of ways. I

> am on Tegretol for my muscle spasms. A couple of times, I realized that I

> have been forgetting to take the tegretol. I use to forget and then I would

> have uncontrolable spasms so I knew right away that I needed the pill. But

> lately when I would forget, I wouldn't realize that I forgot until it was

> time to take the next one. My goal is to get rid of the tegretol or at

> least not to take it as much. That in turn should help my balance problem.

> Keep up the progress. I wish you the best.

[Guest guest]

Hi all,

This is my take on vitamins. I feel that everyone needs them and especially

women. I don't think it is possible for us ladies to eat enough each day to

get the nutrition that we need and stay slim. Men tend to be able to eat

more. I don't think that taking LDN should inhibit anyone from taking

vitamins, especially since we need our bodies to try and heal ourselves

every day. It's a way to keep ahead of the game so to speak, no? I heard

that about vitamin B1 too Larry. Lot's of mosquitos around here too..lol.

Joyce.

From: " LarryGC "

" LDN group "

Subject: Re: [low dose naltrexone] Re: Will we need LDN for the rest of our

lives??

Date: Thu, 10 Jul 2003 08:01:11 -0400

I hope you can give it up. I pretty much stopped taking all vitamins and

minerals after I started noticing changes after the first week or so. I

wanted

to make sure it was doing everything it was or would do, all by itself. I

have

been taking Vitamin B1 the last week though... since I'm camping all month

in

mosquitoland found out which B is was they didn't like.. tastes horrible,

can't

swallow it quick enough... now I know why mosquitos don't like it either.

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

From: " Marie Deady "

" LDN group " ; " LarryGC "

Sent: Thursday, July 10, 2003 07:03

Subject: Re: [low dose naltrexone] Re: Will we need LDN for the rest of our

lives??

>That is great that you are doing so good. I thought of that too, look at

>all the cancers that we might be keeping away by being on the LDN. Dr.

>Bihari and his wife both have a lot of cancer on both sides of their

>families, so they both take LDN as a maitenance to keep the cancer away.

>they have been doing this for about 12 years. I hope that I am doing as

>good as you when I have been on the LDN for 3 months. I have been on it for

>1 month so far. but I think that I will continue to improve because I am

>feeling pretty normal in a lot of ways. I am on Tegretol for my muscle

>spasms. A couple of times, I realized that I have been forgetting to take

>the tegretol. I use to forget and then I would have uncontrolable spasms so

>I knew right away that I needed the pill. But lately when I would forget, I

>wouldn't realize that I forgot until it was time to take the next one. My

>goal is to get rid of the tegretol or at least not to take it as much. That

>in turn should help my balance problem. Keep up the progress. I wish you

>the best.

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