Re: LDN--need some input on this.

[Guest guest]

Hi Marie,

I've never really had fatigue either but I'd be very interested to know how

it all works out for you. That sure does sound a little scary. I wonder if

someone that is going to see Dr. Bihari could ask him that. That really

worries me. Sounds like a new symptom to me. Let us know please. Joyce.

From: " Marie Deady "

To:

Subject: [low dose naltrexone] LDN--need some input on this.

Date: Sat, 19 Jul 2003 08:21:21 -0400

Hi everyone,

Was wondering if anyone has had this happen to them. Before the LDN I never

really had any fatigue except when I was out to late and didn't get the

proper sleep. Then after a good nights sleep I would bounce back fine.

I have been on LDN for 6 weeks now. For the most part I feel great with some

sypmtomatic releif. A couple of weeks ago I got some serious fatigue. At

that time I was trying to get up to 4.5 mg and I thought that maybe my body

couldn't take the high dose, so I cut back a little. I am on about 3.75.

After cutting back I felt great again. I have been staying on 3.75 since.

But yesterday I had some serious fatigue again. Now today I am very fatigued

also. Tonight I am going to cut back a little to see how that works. Or

shuld I be increasing it?

Has this been happening to anyone else?

I'd appreciate any help that anyone can give me on this.

Marie

_________________________________________________________________

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[Guest guest]

my opinion is that it is unrelated to LDN but part of MS. The experiment

to try is to stop taking LDN while fatigued and see if it goes away. I

doubt that it will based on how LDN works (triggers endocryn production

by simply blocking uptake of opiates temporarily).

I think it would be interesting to ask patients who are on the 50mb/day

program whether or not they are fatigued -- I know they don't like the

drug's actions (e.g. makes them depressed) but I wonder about fatigue. I'm

sre Bihari has some experience there as that is where he started in the

early 80's.

I for one, take a 10 minute nap in the afternoon and it really envigorates

me. Also I don't (can't) sleep more than 6 hrs / night -- been this way

for years.... If I don't get the nap in, I am tired at night.

I am now on 4.5mg/day and stopped drinking coffee last December. Yerba

Mate tea (no caffeine) really gives me a gentle lift when I need it w/o

the coffee crash I used to get.

phil

On Sat, 19 Jul 2003, wkendz 32 wrote:

> Hi Marie,

> I've never really had fatigue either but I'd be very interested to know how

> it all works out for you. That sure does sound a little scary. I wonder if

> someone that is going to see Dr. Bihari could ask him that. That really

> worries me. Sounds like a new symptom to me. Let us know please. Joyce.

>

>

> From: " Marie Deady "

> To:

> Subject: [low dose naltrexone] LDN--need some input on this.

> Date: Sat, 19 Jul 2003 08:21:21 -0400

> Hi everyone,

> Was wondering if anyone has had this happen to them. Before the LDN I never

> really had any fatigue except when I was out to late and didn't get the

> proper sleep. Then after a good nights sleep I would bounce back fine.

> I have been on LDN for 6 weeks now. For the most part I feel great with some

> sypmtomatic releif. A couple of weeks ago I got some serious fatigue. At

> that time I was trying to get up to 4.5 mg and I thought that maybe my body

> couldn't take the high dose, so I cut back a little. I am on about 3.75.

> After cutting back I felt great again. I have been staying on 3.75 since.

> But yesterday I had some serious fatigue again. Now today I am very fatigued

> also. Tonight I am going to cut back a little to see how that works. Or

> shuld I be increasing it?

> Has this been happening to anyone else?

> I'd appreciate any help that anyone can give me on this.

> Marie

>

> _________________________________________________________________

> Protect your PC - get McAfee.com VirusScan Online

> http://clinic.mcafee.com/clinic/ibuy/campaign.asp?cid=3963

>

>

>

>

[Guest guest]

Hi ,

Oh I am sure it is the MS but that is what worries me. The fact that this

seems to be a new symptom for her. If the LDN is preventing further

progression and she is experiencing a new symptom that is something

different alltogether. I am very curious to find out the outcome here. I

seemed to have an episode about 6 months ago where I got the worse I've ever

been as far as leg weakness and balance. I felt like I needed a cane for the

first time ever. Well someone advised me to up the dose from 3mg and to

change compounders ( I think I was the only one they were compounding the

LDN for...not sure) I did both and so far so good for me but I am always

eager to hear about anything like this and how it progresses. Joyce.

From: " G. Harding "

wkendz 32

CC: Mardea@...,

Subject: Re: [low dose naltrexone] LDN--need some input on this.

Date: Sat, 19 Jul 2003 11:31:55 -0400 (EDT)

my opinion is that it is unrelated to LDN but part of MS. The experiment

to try is to stop taking LDN while fatigued and see if it goes away. I

doubt that it will based on how LDN works (triggers endocryn production

by simply blocking uptake of opiates temporarily).

I think it would be interesting to ask patients who are on the 50mb/day

program whether or not they are fatigued -- I know they don't like the

drug's actions (e.g. makes them depressed) but I wonder about fatigue. I'm

sre Bihari has some experience there as that is where he started in the

early 80's.

I for one, take a 10 minute nap in the afternoon and it really envigorates

me. Also I don't (can't) sleep more than 6 hrs / night -- been this way

for years.... If I don't get the nap in, I am tired at night.

I am now on 4.5mg/day and stopped drinking coffee last December. Yerba

Mate tea (no caffeine) really gives me a gentle lift when I need it w/o

the coffee crash I used to get.

phil

On Sat, 19 Jul 2003, wkendz 32 wrote:

>Hi Marie, I've never really had fatigue either but I'd be very interested

>to know how it all works out for you. That sure does sound a little scary.

>I wonder if someone that is going to see Dr. Bihari could ask him that.

>That really worries me. Sounds like a new symptom to me. Let us know

>please. Joyce.

>

>

>From: " Marie Deady " Subject: [low dose naltrexone] LDN--need some input

>on this. Date: Sat, 19 Jul 2003 08:21:21 -0400 Hi everyone, Was wondering

>if anyone has had this happen to them. Before the LDN I never really had

>any fatigue except when I was out to late and didn't get the proper sleep.

>Then after a good nights sleep I would bounce back fine. I have been on LDN

>for 6 weeks now. For the most part I feel great with some sypmtomatic

>releif. A couple of weeks ago I got some serious fatigue. At that time I

>was trying to get up to 4.5 mg and I thought that maybe my body couldn't

>take the high dose, so I cut back a little. I am on about 3.75. After

>cutting back I felt great again. I have been staying on 3.75 since. But

>yesterday I had some serious fatigue again. Now today I am very fatigued

>also. Tonight I am going to cut back a little to see how that works. Or

>shuld I be increasing it? Has this been happening to anyone else? I'd

>appreciate any help that anyone can give me on this. Marie

>

>_________________________________________________________________ Protect

>your PC - get McAfee.com VirusScan Online

>http://clinic.mcafee.com/clinic/ibuy/campaign.asp?cid=3963

>

>

>

>

[Guest guest]

Hi Joan...oh I am not wondering about that aspect at all now that I know all

the facts. There are so many dynamics at work here. First of all, if you

understand the pharmaceutacal companies and how they work, they will look at

a drug that has potential for a patent. That is how they corner the market

on the product and can charge big money on it for 20 years until the patent

wears off. Well Naltrexone has been in use for almost 20 years for other

things so there is no hope for a patent at this point. No patent, no drug

company interest...plain and simple. It's all about money. No drug company

is gonna shell out the millions it takes for a clinical study to have access

to a drug that has no payback in the way of a patent. They would therefore

be giving up all the profits from those ABCR drugs that they put so much

money into testing for as well. They'd have to be nuts to do that...where

does that leave us? Pretty much on our own. I for one am not gonna wait for

some kind hearted soul to put the money up for the testing. I totally

understand the neuros position in all of it as well. They only know what has

been tested. They surely don't want to go out on a limb for a drug that has

not been officially sanctioned for the very subject that they spend a lot

of their time with, MS. I keep thinking that if I was in their position I'd

probably have no choice but to do that as well. That is why, if you find a

doc in another field, they are much more open to new ideas were it relates

to MS. Now that I know all this, it makes so much more sense to me. It's

such a catch 22 situation but I share what I know whenever anyone is

interested...all I can do. I have always felt that the way to make

intelligent decisions is to be privy to all of the info. I just feel

incredibly lucky that someone told me about it. I come up against a lot of

opposition and used to wonder why...I now know why. Hope this helps you.

Best wishes to you as well. Joyce.

From: Palace8@...

wkendz32@...

Subject: Re: [low dose naltrexone] LDN--need some input on this.

Date: Sat, 19 Jul 2003 12:15:16 EDT

Joyce

I am wondering why there hasn't been a great test for LDN so that it would

not be such a little known medicine.? Does anyone know?

It seems like if it was so wonderful, more doctors, health insurance

companies, and the ms center would know something about it which they don't.

good wishes,

Joan

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[Guest guest]

I've been on 4.5mg for under a week now and whereas I feel great, my

balance/walking is as bad as it's ever been. I've gotten hooked on walking

with a cane but would like to throw it away! sometime soon.

I'm patient for results but want ever-so-much to walk normally again...

Fatigue is generally not a problem for me unless I walk a great distance.

On Sat, 19 Jul 2003, wkendz 32 wrote:

> Hi ,

> Oh I am sure it is the MS but that is what worries me. The fact that this

> seems to be a new symptom for her. If the LDN is preventing further

> progression and she is experiencing a new symptom that is something

> different alltogether. I am very curious to find out the outcome here. I

> seemed to have an episode about 6 months ago where I got the worse I've ever

> been as far as leg weakness and balance. I felt like I needed a cane for the

> first time ever. Well someone advised me to up the dose from 3mg and to

> change compounders ( I think I was the only one they were compounding the

> LDN for...not sure) I did both and so far so good for me but I am always

> eager to hear about anything like this and how it progresses. Joyce.

>

>

> From: " G. Harding "

> wkendz 32

> CC: Mardea@...,

> Subject: Re: [low dose naltrexone] LDN--need some input on this.

> Date: Sat, 19 Jul 2003 11:31:55 -0400 (EDT)

> my opinion is that it is unrelated to LDN but part of MS. The experiment

> to try is to stop taking LDN while fatigued and see if it goes away. I

> doubt that it will based on how LDN works (triggers endocryn production

> by simply blocking uptake of opiates temporarily).

> I think it would be interesting to ask patients who are on the 50mb/day

> program whether or not they are fatigued -- I know they don't like the

> drug's actions (e.g. makes them depressed) but I wonder about fatigue. I'm

> sre Bihari has some experience there as that is where he started in the

> early 80's.

> I for one, take a 10 minute nap in the afternoon and it really envigorates

> me. Also I don't (can't) sleep more than 6 hrs / night -- been this way

> for years.... If I don't get the nap in, I am tired at night.

> I am now on 4.5mg/day and stopped drinking coffee last December. Yerba

> Mate tea (no caffeine) really gives me a gentle lift when I need it w/o

> the coffee crash I used to get.

> phil

> On Sat, 19 Jul 2003, wkendz 32 wrote:

> >Hi Marie, I've never really had fatigue either but I'd be very interested

> >to know how it all works out for you. That sure does sound a little scary.

> >I wonder if someone that is going to see Dr. Bihari could ask him that.

> >That really worries me. Sounds like a new symptom to me. Let us know

> >please. Joyce.

> >

> >

> >From: " Marie Deady " Subject: [low dose naltrexone] LDN--need some input

> >on this. Date: Sat, 19 Jul 2003 08:21:21 -0400 Hi everyone, Was wondering

> >if anyone has had this happen to them. Before the LDN I never really had

> >any fatigue except when I was out to late and didn't get the proper sleep.

> >Then after a good nights sleep I would bounce back fine. I have been on LDN

> >for 6 weeks now. For the most part I feel great with some sypmtomatic

> >releif. A couple of weeks ago I got some serious fatigue. At that time I

> >was trying to get up to 4.5 mg and I thought that maybe my body couldn't

> >take the high dose, so I cut back a little. I am on about 3.75. After

> >cutting back I felt great again. I have been staying on 3.75 since. But

> >yesterday I had some serious fatigue again. Now today I am very fatigued

> >also. Tonight I am going to cut back a little to see how that works. Or

> >shuld I be increasing it? Has this been happening to anyone else? I'd

> >appreciate any help that anyone can give me on this. Marie

> >

> >_________________________________________________________________ Protect

> >your PC - get McAfee.com VirusScan Online

> >http://clinic.mcafee.com/clinic/ibuy/campaign.asp?cid=3963

> >

> >

> >

> >

[Guest guest]

I am not sure what happens either -- I ran a low grade fever the first two weeks on LDN. They say that MS is caused by viruses or infection in the body. Maybe the symptoms are a sign that the immune system (because of LDN) is now able to fight the infection in the body. As a result, we get a die off reaction and go through cycles of feeling a little crappy. Just a thought.

[Guest guest]

Hi Phil,

It might not be related to the LDN but i think that it is strange that I

never got it quite like this before. I am going to experiment a little.

thanks for your input Phil.

Marie

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

From: " G. Harding " <philh@...>

" wkendz 32 " <wkendz32@...>

Cc: <Mardea@...>; <low dose naltrexone >

Sent: Saturday, July 19, 2003 11:31 AM

Subject: Re: [low dose naltrexone] LDN--need some input on this.

> my opinion is that it is unrelated to LDN but part of MS. The experiment

> to try is to stop taking LDN while fatigued and see if it goes away. I

> doubt that it will based on how LDN works (triggers endocryn production

> by simply blocking uptake of opiates temporarily).

> I think it would be interesting to ask patients who are on the 50mb/day

> program whether or not they are fatigued -- I know they don't like the

> drug's actions (e.g. makes them depressed) but I wonder about fatigue. I'm

> sre Bihari has some experience there as that is where he started in the

> early 80's.

> I for one, take a 10 minute nap in the afternoon and it really envigorates

> me. Also I don't (can't) sleep more than 6 hrs / night -- been this way

> for years.... If I don't get the nap in, I am tired at night.

> I am now on 4.5mg/day and stopped drinking coffee last December. Yerba

> Mate tea (no caffeine) really gives me a gentle lift when I need it w/o

> the coffee crash I used to get.

>

> phil

>

> On Sat, 19 Jul 2003, wkendz 32 wrote:

>

> > Hi Marie,

> > I've never really had fatigue either but I'd be very interested to know

how

> > it all works out for you. That sure does sound a little scary. I wonder

if

> > someone that is going to see Dr. Bihari could ask him that. That really

> > worries me. Sounds like a new symptom to me. Let us know please. Joyce.

> >

> >

> > From: " Marie Deady "

> > To:

> > Subject: [low dose naltrexone] LDN--need some input on this.

> > Date: Sat, 19 Jul 2003 08:21:21 -0400

> > Hi everyone,

> > Was wondering if anyone has had this happen to them. Before the LDN I

never

> > really had any fatigue except when I was out to late and didn't get the

> > proper sleep. Then after a good nights sleep I would bounce back fine.

> > I have been on LDN for 6 weeks now. For the most part I feel great with

some

> > sypmtomatic releif. A couple of weeks ago I got some serious fatigue. At

> > that time I was trying to get up to 4.5 mg and I thought that maybe my

body

> > couldn't take the high dose, so I cut back a little. I am on about 3.75.

> > After cutting back I felt great again. I have been staying on 3.75

since.

> > But yesterday I had some serious fatigue again. Now today I am very

fatigued

> > also. Tonight I am going to cut back a little to see how that works. Or

> > shuld I be increasing it?

> > Has this been happening to anyone else?

> > I'd appreciate any help that anyone can give me on this.

> > Marie

> >

> > _________________________________________________________________

> > Protect your PC - get McAfee.com VirusScan Online

> > http://clinic.mcafee.com/clinic/ibuy/campaign.asp?cid=3963

> >

> >

> >

> >