Re: MS Society's lastest damning comments on LDN

[Guest guest]

TRY COPAXONE, NO SIDE EFFECTS.

[Guest guest]

--- Boilerplate Crap! The MS society would lose millions if LDN was

proven to be effective! It would prove they were wrong for the last

50 years! I take LDN and it works for me! Case closed!

Steve

In low dose naltrexone , " Friday " <paraschick@y...>

wrote:

> Hi everyone - how dissapointing is this damned statement on LDN

from

> the National Ms Society? I sure wouldn't want my doctor to read

> that - and they reckon they've tested LDN on lab mic? Well, first

I

> heard of it!!!

>

> Click on this link if you want to be pissed off:

>

> http://www.nationalmssociety.org/Clinup-Naltrexone.asp

>

> Friday

[Guest guest]

Just my 2 cents worth!!

Can you imagine the class action lawsuits that could arise if the scientist/pharmaceuticals said, "Oops, we've been going in the wrong direction! Rather than suppress the immune system, we should regulate or speed it up!" That would be like the ADA saying,"Oops, mercury amalgams really are toxic to the human body!" Now, I understand that the statute of limitations would have expired for many people, but still...ain't ever gonna happen!!!

It's criminal that LDN isn't the first thing that MS (or certain other conditions) patients are recommended to try! Whatever happened to 'first do NO harm'?

My 2 cents!!

Marcie (PPMS)

[Guest guest]

-Do as I did guys, send comment about it back to them - I just did!!!

Even though they want all our address information and phone numbers,

I dont care, they can know my underwear size for all I care - write

to em, boycot em, refuse to support other stupid projects that wont

do a damned thing until 20 years time or more -

Friday

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

wrote:

> Naltrexone is said to work in MS and other diseases by adjusting

the level of endorphins in the body to enhance immune function.

Enhancement of the immune system, however, is not recommended for

anyone with MS. Because MS is thought to be an autoimmune disease, in

which the immune system mistakenly attacks the myelin in the central

nervous system, the goal of currently approved treatments is to

inhibit the overactive immune response rather than boost it. In fact,

the one study of low dose naltrexone in experimental allergic

encephalomyelitis (EAE)-the animal model of MS-demonstrated a disease

worsening (Panerai et al. 1994. J Neuroimmunol 51(2):169-176).

>

>

>

>

>

> It's a good thing we're not mice!

>

>

>

> I didn't think LDN ENHANCED the immune function, just helped your

body Orchestrate it PROPERLY.

>

>

>

> I hope they eat their words sooner than later.

>

> I guess we're all getting worse?

>

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

> From: Friday

> low dose naltrexone

> Sent: Friday, May 14, 2004 10:07

> Subject: [low dose naltrexone] MS Society's lastest damning

comments on LDN

>

>

> Hi everyone - how dissapointing is this damned statement on LDN

from

> the National Ms Society? I sure wouldn't want my doctor to read

> that - and they reckon they've tested LDN on lab mic? Well,

first I

> heard of it!!!

>

> Click on this link if you want to be pissed off:

>

> http://www.nationalmssociety.org/Clinup-Naltrexone.asp

>

> Friday

>

>

>

>

>

[Guest guest]

Naltrexone is said to work in MS and other diseases by adjusting the level of endorphins in the body to enhance immune function. Enhancement of the immune system, however, is not recommended for anyone with MS. Because MS is thought to be an autoimmune disease, in which the immune system mistakenly attacks the myelin in the central nervous system, the goal of currently approved treatments is to inhibit the overactive immune response rather than boost it. In fact, the one study of low dose naltrexone in experimental allergic encephalomyelitis (EAE)-the animal model of MS-demonstrated a disease worsening (Panerai et al. 1994. J Neuroimmunol 51(2):169-176).

It's a good thing we're not mice!

I didn't think LDN ENHANCED the immune function, just helped your body Orchestrate it PROPERLY.

I hope they eat their words sooner than later.

I guess we're all getting worse?

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

From: Friday

low dose naltrexone

Sent: Friday, May 14, 2004 10:07

Subject: [low dose naltrexone] MS Society's lastest damning comments on LDN

Hi everyone - how dissapointing is this damned statement on LDN from the National Ms Society? I sure wouldn't want my doctor to read that - and they reckon they've tested LDN on lab mic? Well, first I heard of it!!!Click on this link if you want to be pissed off:http://www.nationalmssociety.org/Clinup-Naltrexone.aspFriday

[Guest guest]

May 2004—We have received a number of inquiries about the use of low dose naltrexone as a treatment for multiple sclerosis. There are no published clinical data to support the use of naltrexone in MS.

So WHY aren't THEY reacting to the MS community and seeing to it that clinical trials get started?

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

From: Friday

low dose naltrexone

Sent: Friday, May 14, 2004 10:07

Subject: [low dose naltrexone] MS Society's lastest damning comments on LDN

Hi everyone - how dissapointing is this damned statement on LDN from the National Ms Society? I sure wouldn't want my doctor to read that - and they reckon they've tested LDN on lab mic? Well, first I heard of it!!!Click on this link if you want to be pissed off:http://www.nationalmssociety.org/Clinup-Naltrexone.aspFriday

[Guest guest]

Getting a JOB:

Hi, I'd like a job.

Got any experience?

Um, no.

We can't hire you.

How do I get experience?

Get a job.

How do I get a job?

Got experience?

NO.

Can't hire you.

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

From: Friday

low dose naltrexone

Sent: Friday, May 14, 2004 10:25

Subject: [low dose naltrexone] Re: MS Society's lastest damning comments on LDN

-Do as I did guys, send comment about it back to them - I just did!!! Even though they want all our address information and phone numbers, I dont care, they can know my underwear size for all I care - write to em, boycot em, refuse to support other stupid projects that wont do a damned thing until 20 years time or more - Friday

[Guest guest]

Let's not forget the April 2004 article in ls of Neurology where

the 14 year old who died after an acute exacerbation had no

inflammatory cells seen in the damaged neurological tissue, but

rather death of oligodendrocytes was observed. Furthermore, a

review of other pathological slides from MS patients showed similar

findings. This brings into question whether or not MS is indeed

autoimmune. Clearly, the current treatments are only providing a

small benefit, yet " they " want us to take it our entire lives,

unless that is, we progress to the point where it becomes useless.

My own anecdotal experience has shown immediate and continued

benefits from LDN, while I have no idea what the Betaseron is doing

other than giving me injection-site bruising and flu-like

reactions. I am really disappointed that MS Society is taking this

stance without proper evidence. Clearly, there seems to be enough

anecdotal success stories to warrant a trial. I wonder if they

could be persuaded to fund a small double-blind placebo controlled

trial. Hmmmm.

> > > Hi everyone - how dissapointing is this damned statement on LDN

> > from

> > > the National Ms Society? I sure wouldn't want my doctor to

read

> > > that - and they reckon they've tested LDN on lab mic? Well,

first

> > I

> > > heard of it!!!

> > >

> > > Click on this link if you want to be pissed off:

> > >

> > > http://www.nationalmssociety.org/Clinup-Naltrexone.asp

> > >

> > > Friday

> >

> >

> >

> >

> >

> >

[Guest guest]

On Fri, 14 May 2004 10:54:06 -0400, you wrote:

>May 2004-We have received a number of inquiries about the use of low dose

naltrexone as a treatment for multiple sclerosis. There are no published

clinical data to support the use of naltrexone in MS.

>

>So WHY aren't THEY reacting to the MS community and seeing to it that clinical

trials get started?

Because there is no profit to be made by the drug companies.

No profit - no trial. Is that a song coming through my fog?

[Guest guest]

Friday,

You were certainly right about that article getting one " Pissed-Off " . It is

amazing that the MS society can be such an antagonist against something that

it obviously knows nothing about. To compound the matter they quote

C. Bowling M.D. who has written the most worthless book about ms that I have

read in 20 years. Absolutely mind boggling and as far as I am concerned

further evidence of why we ms'er's MUST take charge of our own health.

Regards,

Tom

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

From: " Friday " <paraschick@...>

<low dose naltrexone >

Sent: Friday, May 14, 2004 8:07 AM

Subject: [low dose naltrexone] MS Society's lastest damning comments on LDN

> Hi everyone - how dissapointing is this damned statement on LDN from

> the National Ms Society? I sure wouldn't want my doctor to read

> that - and they reckon they've tested LDN on lab mic? Well, first I

> heard of it!!!

>

> Click on this link if you want to be pissed off:

>

> http://www.nationalmssociety.org/Clinup-Naltrexone.asp

>

> Friday

>

>

>

>

>

[Guest guest]

It was bad enough when the MS society would not recommend or look

into LDN but now they have really crossed the line by writing this

piece of garbage about LDN and trying to scare people off from the

one drug that can really help people with MS.

I strongly suggest that we all email/mail/call or all of the above,

the MS society and let them know that we will no longer support them

financially or in any other way until they fund a fair and

appropriate double blind, placebo controlled clinical trial on LDN

and MS and retract that erroneous article. I already did and told

them that I would be encouraging everyone I know who has supported

them in the past to do the same thing. If they are ignorant they

need to get educated, if its just all about the money then maybe all

they will respond to is to threaten their financial base. Either way

something needs to change.

My roommate has been on LDN for slightly less than two months now and

she is already 90% better than she has been for the last three years.

Wishing you all the best.

Diane

--- In low dose naltrexone , " Friday " <paraschick@y...>

wrote:

> Hi everyone - how dissapointing is this damned statement on LDN

from

> the National Ms Society? I sure wouldn't want my doctor to read

> that - and they reckon they've tested LDN on lab mic? Well, first

I

> heard of it!!!

>

> Click on this link if you want to be pissed off:

>

> http://www.nationalmssociety.org/Clinup-Naltrexone.asp

>

> Friday

[Guest guest]

Key phrase: " ...Because MS is <thought> to be an autoimmune

disease,... " (emphasis added). They don't KNOW so why should their

conclusions be any more valid than ours???

(soon to be taking LDN)

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

wrote:

> Naltrexone is said to work in MS and other diseases by adjusting

the level of endorphins in the body to enhance immune function.

Enhancement of the immune system, however, is not recommended for

anyone with MS. Because MS is thought to be an autoimmune disease, in

which the immune system mistakenly attacks the myelin in the central

nervous system, the goal of currently approved treatments is to

inhibit the overactive immune response rather than boost it. In fact,

the one study of low dose naltrexone in experimental allergic

encephalomyelitis (EAE)-the animal model of MS-demonstrated a disease

worsening (Panerai et al. 1994. J Neuroimmunol 51(2):169-176).

>

>

>

>

>

> It's a good thing we're not mice!

>

>

>

> I didn't think LDN ENHANCED the immune function, just helped your

body Orchestrate it PROPERLY.

>

>

>

> I hope they eat their words sooner than later.

>

> I guess we're all getting worse?

>

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

> From: Friday

> low dose naltrexone

> Sent: Friday, May 14, 2004 10:07

> Subject: [low dose naltrexone] MS Society's lastest damning

comments on LDN

>

>

> Hi everyone - how dissapointing is this damned statement on LDN

from

> the National Ms Society? I sure wouldn't want my doctor to read

> that - and they reckon they've tested LDN on lab mic? Well,

first I

> heard of it!!!

>

> Click on this link if you want to be pissed off:

>

> http://www.nationalmssociety.org/Clinup-Naltrexone.asp

>

> Friday

>

>

>

>

>

[Guest guest]

Think you got it right. Janie

[Guest guest]

Think you got it right. Janie

[Guest guest]

Tazzer,

Last summer " The Lancelot " the prestigious British medical journal said that

MS has been treated as a neurological disorder for the last hundred years

and may in fact not be neurological at all. Imagine how the ms society will

deal with that !

Regards,

Tom

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

From: " tazzertazzer2003 " <tazzertazzer2003@...>

<low dose naltrexone >

Sent: Friday, May 14, 2004 8:17 AM

Subject: [low dose naltrexone] Re: MS Society's lastest damning comments on

LDN

> --- Boilerplate Crap! The MS society would lose millions if LDN was

> proven to be effective! It would prove they were wrong for the last

> 50 years! I take LDN and it works for me! Case closed!

> Steve

>

>

>

>

>

>

> In low dose naltrexone , " Friday " <paraschick@y...>

> wrote:

> > Hi everyone - how dissapointing is this damned statement on LDN

> from

> > the National Ms Society? I sure wouldn't want my doctor to read

> > that - and they reckon they've tested LDN on lab mic? Well, first

> I

> > heard of it!!!

> >

> > Click on this link if you want to be pissed off:

> >

> > http://www.nationalmssociety.org/Clinup-Naltrexone.asp

> >

> > Friday

>

>

>

>

>

>

[Guest guest]

At first I was as mad as all of you about this. (Ok, still am.) Then

after thinking about it and reading all your excellent comments, the

though occured to me, Why did they publish this article, right now?

It's not like there's really anything " new " here. Just a rehash of

old junk science.

I'm thinking that someone is starting to take notice of how

much " buzz " LDN is getting, and they're running a bit scared. If the

general population of people suffering with the " auto-immune "

diseases really started finding out how good LDN is for many of us,

the drug companies stand to loose a lot. Hence possible pressure on

the MS society to publish this absurd article.

Cinders

" You will observe with concern how long a useful truth may be known

and exist, before it is generally received and practiced on. "

lin

[Guest guest]

You could well be right that they are getting pressured. Either that

or they are just sick of getting repeated emails from all of us

telling them about how wonderful LDN is and they are simply trying to

get rid of all of us by posting this one stupid and misleading

article. Well, guess what? Now they have really done it. At the

very least I am going to email them every single day if I can about

LDN and will be working on possibly even more effective ways of

trying to force them to wake up and smell the LDN roses for the sake

of everyone who has this miserable disease.

Diane

> At first I was as mad as all of you about this. (Ok, still am.)

Then

> after thinking about it and reading all your excellent comments,

the

> though occured to me, Why did they publish this article, right now?

> It's not like there's really anything " new " here. Just a rehash of

> old junk science.

>

> I'm thinking that someone is starting to take notice of how

> much " buzz " LDN is getting, and they're running a bit scared. If

the

> general population of people suffering with the " auto-immune "

> diseases really started finding out how good LDN is for many of us,

> the drug companies stand to loose a lot. Hence possible pressure on

> the MS society to publish this absurd article.

>

> Cinders

>

> " You will observe with concern how long a useful truth may be known

> and exist, before it is generally received and practiced on. "

> lin

[Guest guest]

Yes. Yes. YES. I ageee, and I don't know how to fight.

Don't fight. Let's just keep doing what we're doing,ie. taking LDN. And tell

everyone about it.

My paranoid part (I have chronic Lyme disease with an MS presentation) and

paranoia is part of the symptomology.

Anyway my paranoid part hopes the pharmaceutical mega industry and corporation,

and those that are in bed with it doesn't ...... They wouldn't do that would

they???

[Guest guest]

Read the article...Pissed off...Yeah, you bet!

Just fired off an e-mail, (Polite one) to our local chapter. (STEAM!!!)

Also followed it with the articles on the 14yr old who died from MS.

And the article about how it is thought by " some " that the EAE models

are leading the research in the wrong direction.

Again, I'll sit back and wait, and wait, and maybe, get an answer from

our rep. Not holding my breath, but am holding onto hope.

Just a thought, if we ALL were to e-mail our local reps for the MS society

with OUR views on this...sigh, still might not work.

Have a Great Day,

Jim(ms)

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

From: " Friday " <paraschick@...>

<low dose naltrexone >

Sent: Friday, May 14, 2004 7:07 AM

Subject: [low dose naltrexone] MS Society's lastest damning comments on LDN

> Hi everyone - how dissapointing is this damned statement on LDN from

> the National Ms Society? I sure wouldn't want my doctor to read

> that - and they reckon they've tested LDN on lab mic? Well, first I

> heard of it!!!

>

> Click on this link if you want to be pissed off:

>

> http://www.nationalmssociety.org/Clinup-Naltrexone.asp

>

> Friday

>

>

>

>

>