Re: New to MS - Haven't read about LDN failures - have you?

[Guest guest]

Dear Alan,

I can only tell you my experience, and, as you will be told by others,

copaxone is the ONLY ABC that is at all compatible with LDN. The others

actually work against it, they say. I was diagnosed 3 years ago, tried

Avonex and hated the endless flu symptoms, tried Rebiff and got really

depressed, then was on Copaxone for a long time with no side effects, but

was also very slowly getting worse. I have only been on LDN for two months,

but they have been the best two months I've had in 10 years. I can't tell

you about long term from experience. But I stopped Copaxone, and truly

believe from my experience and from what others say, that LDN not only stops

progression, but in some cases helps end existing symptoms.

Best wishes,

Lynda

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

From: " alanms1579 " <alanms@...>

<low dose naltrexone >

Sent: Wednesday, March 03, 2004 12:09 AM

Subject: [low dose naltrexone] New to MS - Haven't read about LDN failures -

have you?

> I am suppose to pick an ABC or Ribif in 2 days. Diagnosed by MRI 2

> weeks ago after bad optical Heuritis attack. Have been reading

> everything on Vitmins, Nutrition, exercise, the main stream MS stuff

> and came across LDN. Read as much as I could (still can't see well

> in left eye).

>

> All I have read so far about LDN sounds almost too good to be true.

> Have any of you experienced or heard of LDN not working on MS at

> least as good if not better than ABC or R?

>

> Also interested in communicating with anyone in Ontario Canada (near

> Toronto or Hamilton best)about Docs, treatment, sources of LDN etc.

>

> This is my first attempt to post anything anywhere - hope it is ok!

>

>

>

>

>

>

[Guest guest]

> If you subscribe to alt.support.mult-sclerosis you will find a thread

> started recently by someone who had disastrous results with LDN. She

> had a seriously bad reaction.

HOW DOES ONE SUBSCRIBE TO alt.support.mult-sclerosis ?

[Guest guest]

> >HOW DOES ONE SUBSCRIBE TO alt.support.mult-sclerosis ?

> >

>

> It's a newsgroup. Any newsreader like Agent or even Outlook Express

> can get it. It has been around for about ten years.

>

> Steve

Sorry, Steve, I must be really ignorant. From what I can gather newsgroups

have a monthly fee, right? I cannot afford such a thing. Is there any way

to access this bad LDN experience without paying? Can you give us the gist

of it, perhaps?

Lynda

[Guest guest]

On Wed, 03 Mar 2004 05:09:06 -0000, you wrote:

>

>All I have read so far about LDN sounds almost too good to be true.

>Have any of you experienced or heard of LDN not working on MS at

>least as good if not better than ABC or R?

>

If you subscribe to alt.support.mult-sclerosis you will find a thread

started recently by someone who had disastrous results with LDN. She

had a seriously bad reaction.

[Guest guest]

This is the " negative " experience that I found on the alt.support.ms site.

" I have been taking narcotics for a long time and wrote this on the

> records the doctor wanted me to fax to him, also at my expense. Come

> the pre-arranged appointment time I called and the doctor was not

> available. I had to wait until the next day and call long distance

> again.

>

> This doctor RX'd LDN to me at .3 mg a day.

>

> It made me very sick and I then found out about the reaction to

> narcotics with LDN (NO!).

>

> Anyway, I wasted a lot of money and got sick off from LDN. No one

> likes to read this, but this is what happened to me FYI. At least I

> have the guts to tell what happened as I hang my head in shame for

> being scammed and made sick. "

The problem was not the LDN, the problem was that the doctor gave LDN to

someone who TAKES NARCOTICS. Of course LDN won't work, and will make the

person very unhappy.

Lynda

[Guest guest]

---

I never took the ABC drugs but have lived in pain for 9 years until

starting the LDN on 12/03. I was on anti-

depressants.steroids,neuontin, all of which didn't work. I'll stay

on LDN until they find a cure!

Steve

In low dose naltrexone , steve@t... wrote:

> On Wed, 03 Mar 2004 05:09:06 -0000, you wrote:

>

>

> >

> >All I have read so far about LDN sounds almost too good to be

true.

> >Have any of you experienced or heard of LDN not working on MS at

> >least as good if not better than ABC or R?

> >

>

> If you subscribe to alt.support.mult-sclerosis you will find a

thread

> started recently by someone who had disastrous results with LDN. She

> had a seriously bad reaction.

[Guest guest]

HI.

I STARTED WITH OPTIC NEURITIS - WAS GIVEN ORAL STEROID.

LATER, I WAS TOLD THAT I SHOULD HAVE BEEN GIVEN IV STEROIDS

WHICH SOMETIMES HALTS MS ALL TOGETHER. ARE YOU BEING

TREATED WITH PREDNISONE?

BESTAUNT

[Guest guest]

> HI.

> I STARTED WITH OPTIC NEURITIS - WAS GIVEN ORAL STEROID.

> LATER, I WAS TOLD THAT I SHOULD HAVE BEEN GIVEN IV STEROIDS

> WHICH SOMETIMES HALTS MS ALL TOGETHER. ARE YOU BEING

> TREATED WITH PREDNISONE?

> BESTAUNT

Not being treated with anything. Took 2 weeks to rule out other

stuff and another week to get and hear results of MRI. By that time

use of steroids did not make sense.

[Guest guest]

On Wed, 3 Mar 2004 03:01:15 -0500, you wrote:

>

>> If you subscribe to alt.support.mult-sclerosis you will find a thread

>> started recently by someone who had disastrous results with LDN. She

>> had a seriously bad reaction.

>

>

>HOW DOES ONE SUBSCRIBE TO alt.support.mult-sclerosis ?

>

It's a newsgroup. Any newsreader like Agent or even Outlook Express

can get it. It has been around for about ten years.

Steve

[Guest guest]

There is no Fee's to join a News group, you can read it via this link, or subscribe using your news group reader. I don't want to download and read every post, so I like to skim it Via the web.

Click Here>>>http://groups.google.com/groups?hl=en & lr= & ie=UTF-8 & group=alt.support.mult-sclerosis

[Guest guest]

On Wed, 3 Mar 2004 05:05:47 -0500, you wrote:

>

>> >HOW DOES ONE SUBSCRIBE TO alt.support.mult-sclerosis ?

>> >

>>

>> It's a newsgroup. Any newsreader like Agent or even Outlook Express

>> can get it. It has been around for about ten years.

>>

>> Steve

>

>Sorry, Steve, I must be really ignorant. From what I can gather newsgroups

>have a monthly fee, right? I cannot afford such a thing. Is there any way

>to access this bad LDN experience without paying? Can you give us the gist

>of it, perhaps?

>

Some of the big news vendors that cater for music and picture

collectors charge a bit but the discussion ones are usually free.

news.individual.net is probably the best free one - do a web search

for it and follow the instruction to start using it.

The message thread is far too long and complex to copy post it here.

Steve

[Guest guest]

On Wed, 3 Mar 2004 07:43:29 -0500, you wrote:

>The problem was not the LDN, the problem was that the doctor gave LDN to

>someone who TAKES NARCOTICS. Of course LDN won't work, and will make the

>person very unhappy.

>

>Lynda

>

That's the start of the thread but the discussion goes on for a few

more days. Some for LDN and some against it.

I added the message about using very low doses of naltrexone with very

low doses of opiates. They can be mixed but the doses have to be much

lower than LDN and normal pain killer.

I have taken codeine with a trace of LDN and found it to be a very

effective pain killer.

Steve

[Guest guest]

Hi Alan, Welcome! You did just fine on your first post. (smile)

Just like any other med, there are people who cannot take LDN,

Allergies are always a possibility and I know someone who got off of

it, because of non stop diarea. I have been on LDN for almost a

year now, and at first I had a lot of stiffness, but rode it out and

the stiffness finally went away. LDN has stopped my progression, so

far and I am confident it will continue to do so.

There are a lot of people from the Ontario area, in this forum, and

I am sure that you will hear from them. I do know that

pharmacy, in Toronto, compounds LDN. Call them for a DR. referal.

That's what I did, here in the States.

Good luck to you, and I hope you chose LDN, and that it works for

you as well as it has worked for me.

SallyC

" alanms1579 " wrote:

>

> All I have read so far about LDN sounds almost too good to be

true.

> Have any of you experienced or heard of LDN not working on MS at

> least as good if not better than ABC or R?

> This is my first attempt to post anything anywhere - hope it is ok!

[Guest guest]

Sally,

I'm at day 75 and I still have a lot of stiffness when I get up in

the night. (my sleeping has improved from waking up every hour to 2

times a night)

In the mornings I still have some stiffness and a backach. The

stiffness almost goes away after the first few minutes I'm up but if

I get up after sitting for a while it comes back for a few seconds.

How long did it take for the stiffness to leave completely?

thank you

I have been on LDN for almost a

> year now, and at first I had a lot of stiffness, but rode it out

and

> the stiffness finally went away.

[Guest guest]

Hi Johanne, With MS, you will always have stiffness, especially

after you have been sitting for awhile. But the extra stiffness

that you get when first taking LDN will fade in a few months.

I like to think that it's a good thing, because LDN is waking up

your muscles and they get stiff, just like they would if you had

been exercising a lot. Give it time, don't get discouraged.

Much luck too you.

SallyC

" johannefbzzz " wrote:

Sally,

I'm at day 75 and I still have a lot of stiffness when I get up

How long did it take for the stiffness to leave completely?

thank you

[Guest guest]

Steve, from everything I`ve read there is no comparison. Dr. Bihari says he

has 70 people with ms on ldn all which have remained stable. Literature

states it halts progression in 98-99 percent of cases. I beleive with all my

heart you can be healthier with ms than someone who does not have it. So

much is how we care for ourselves. Someone famous once said " Give a man a

chronic condition and he will live till a ripe old age. It`s all about the

perseverance of the human spirit. I would much rather regulate my immune

system with a smalll amount of ldn than damage the rest of my body with

drugs that have no proven track record at reversal of damage and many people

get worse while they are on them. Sorry for being so opinionated but it

disturbs me when I think of how lucrative chronic illness is to this

country`s economy and I try to have medical professionals in my life with

pure intent to help others.Kathy

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

From: <steve@...>

<low dose naltrexone >

Sent: Wednesday, March 03, 2004 5:53 AM

Subject: Re: [low dose naltrexone] New to MS - Haven't read about LDN

failures - have you?

> On Wed, 03 Mar 2004 05:09:06 -0000, you wrote:

>

>

> >

> >All I have read so far about LDN sounds almost too good to be true.

> >Have any of you experienced or heard of LDN not working on MS at

> >least as good if not better than ABC or R?

> >

>

> If you subscribe to alt.support.mult-sclerosis you will find a thread

> started recently by someone who had disastrous results with LDN. She

> had a seriously bad reaction.

>

>

>

>

>

>