Re: Re: American Neuro trashed LDN at Melbourne MS Conference

[Guest guest]

Hello Friday and everybody,

Friday, I read your post about the Sydney seminar on MS and it's amazing

that the neuro did a complete turnaround on LDN within a few days. Mmm I

smell a rat.

Just some updates from here- Everyone who has begun LDN that I know about

has achieved positive effects. A guy from Perth has reported that his

numbness has completely gone within a few weeks from starting it. He has

RRMS. I am expecting a call shortly from the social worker who told me about

the lady who was in a wheelchair for 9 years and after a month on LDN now

uses a walker and got her license back. I will let you know the outcome.

The girl who came from Greece and was diagnosed with MS here- The neuros

scared her off LDN and she is now on Betaferon injections. She also rang

Greece and was told by doctors " don't even think about it " it's just a

placebo. (Well I did try!)

As for me, I haven't relapsed yet, (fingers crossed). My medical history

shows I had steroids every 10-12 weeks for 3 1/2 years due to

relapses/progression. (which by the way have now given me osteoporosis).

It's now been 18 weeks and no sign of relapse yet. What is my neuro going to

say about that? Coincidence? Placebo? I don't think so.

Another quick note: I have had some success on getting a story about LDN on

Today Tonight (a national current affairs show in Australia). The cameraman

from the show has been there for 10 years and has influence there. His

auntie eventually died from MS, so he is particularly interested in hearing

about it, so I have been asked to put together as much info as possible

about it and he will submit it directly himself. All I have are anecdotal

reports from this site and Dr Bihari's website info. He said they might be

interested in interviewing Dr Bihari. Can I please have some advice/help in

getting this happening? What will be the best approach? Anything will be

appreciated.

Thanks,

Effie

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

From: Friday [mailto:paraschick@...]

Sent: Wednesday, 16 June 2004 12:54 AM

low dose naltrexone

Subject: [low dose naltrexone] Re: American Neuro trashed LDN at Melbourne MS

Conference

Effie,

Hi and its great to see you posting now. I also think the group

would be very interested in reading about the woman with MS who did

so well on LDn, as you were told by your physios? ANY News on where

she is and how she is now? (Vicki here, known as just_friday_now on

this forum).

Regarding the neurologist from America, DR jACK BURKS? Boy, has he

changed his tune travelling from Syndey to Melbourne - has someone

been in his ear? He was completely different at the Sydney seminar,

and to read about my experience at that seminar, go back to post

number 12087 on this forum.

It's really surprised me his changed attitude.

Hope to see more posts from you soon in here, especially your good

progress on LDN you told me about personally.

Regards

Friday (Vicki)

[Guest guest]

Hi Effie and everybody,

Well done EffieGreat stuff, fantastic and all that. I live in South Australia and have PPMS dx about 2 yrs ago. I was heading for a wheelchair fast and started on ldn 12months ago. No doubt it has stopped the progression and I am holding my own. Hydro, exercises, supplements diet etc. Just started on Prokarin, so we will see. Keep us in touch with your progress with Today Tonight.

I am also going to a seminar tomorrow here in Adelaide with same Professor Burks. If I get a chance will tell him about my experience with LDN, so will be interesting after your's and Friday's

comments. Thanks for that.

Regards

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

From: low dose naltrexone

Date: 06/16/04 03:55:23

low dose naltrexone

Subject: RE: [low dose naltrexone] Re: American Neuro trashed LDN at Melbourne MS Conference

Hello Friday and everybody,

Friday, I read your post about the Sydney seminar on MS and it's amazing

that the neuro did a complete turnaround on LDN within a few days. Mmm I

smell a rat.

Just some updates from here- Everyone who has begun LDN that I know about

has achieved positive effects. A guy from Perth has reported that his

numbness has completely gone within a few weeks from starting it. He has

RRMS. I am expecting a call shortly from the social worker who told me about

the lady who was in a wheelchair for 9 years and after a month on LDN now

uses a walker and got her license back. I will let you know the outcome.

The girl who came from Greece and was diagnosed with MS here- The neuros

scared her off LDN and she is now on Betaferon injections. She also rang

Greece and was told by doctors "don't even think about it" it's just a

placebo. (Well I did try!)

As for me, I haven't relapsed yet, (fingers crossed). My medical history

shows I had steroids every 10-12 weeks for 3 1/2 years due to

relapses/progression. (which by the way have now given me osteoporosis).

It's now been 18 weeks and no sign of relapse yet. What is my neuro going to

say about that? Coincidence? Placebo? I don't think so.

Another quick note: I have had some success on getting a story about LDN on

Today Tonight (a national current affairs show in Australia). The cameraman

from the show has been there for 10 years and has influence there. His

auntie eventually died from MS, so he is particularly interested in hearing

about it, so I have been asked to put together as much info as possible

about it and he will submit it directly himself. All I have are anecdotal

reports from this site and Dr Bihari's website info. He said they might be

interested in interviewing Dr Bihari. Can I please have some advice/help in

getting this happening? What will be the best approach? Anything will be

appreciated.

Thanks,

Effie

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

From: Friday [mailto:paraschick@...]

Sent: Wednesday, 16 June 2004 12:54 AM

low dose naltrexone

Subject: [low dose naltrexone] Re: American Neuro trashed LDN at Melbourne MS

Conference

Effie,

Hi and its great to see you posting now. I also think the group

would be very interested in reading about the woman with MS who did

so well on LDn, as you were told by your physios? ANY News on where

she is and how she is now? (Vicki here, known as just_friday_now on

this forum).

Regarding the neurologist from America, DR jACK BURKS? Boy, has he

changed his tune travelling from Syndey to Melbourne - has someone

been in his ear? He was completely different at the Sydney seminar,

and to read about my experience at that seminar, go back to post

number 12087 on this forum.

It's really surprised me his changed attitude.

Hope to see more posts from you soon in here, especially your good

progress on LDN you told me about personally.

Regards

Friday (Vicki)

[Guest guest]

In all fairness I must say in response to Effie when you say "everyone that you know about has had positive results", Careful now,...you may need to know more people, there are some that I am in touch with that would have loved to have gotten positive results, but after months of faithfully trying 4.5mg.s and other amounts,and having put up with the stiffness they have quit ldn and gone to different treatments. Most of which I tried in the past with no good results too I might add.

Sure there are mitigating factors that we have no control over i.e. stress, infections, mercury fillings, weather, etc. and I take these into account.

Now this ldn was compounded at the same place that I get mine from and it has always been done up right,even once when I thought it was not made right, it was,but there was other things going on that countered the effects of ldn.

It seems to me that if I can talk one on one to people that are starting on ldn. and keep encouraging them this will greatly improve there symptoms.

If they are given the prescription and then left alone,even knowing fully well that there may be stiffness and sleeplessness at the onset,they will not always see stellar results. Even if I am in contact continuously the outcome is in doubt!

In my books the building of endorphins is not a given one,a person may not make the necessary amount as there may be a glandular problem unknown to them working against the ldn.

We can only attest to how good ldn has been for us after a full year or longer of use.

I believe this time frame will negate the placebo effect if there was one.

Now I don't mean to jump on you but I just heard from another person who saw no results at all after six months, and using the same pills from the same compounder as him I am still doing fine!

I guess he won't be filling in the survey!He will hardly talk to me!

O.K. I am frustrated, I want everyone to see the same benefits as me. yet I know that won't happen!

Reg.

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

> Just some updates from here- Everyone who has begun LDN that I know about> has achieved positive effects. A guy from Perth has reported that his> numbness has completely gone within a few weeks from starting it. He has> RRMS. I am expecting a call shortly from the social worker who told me about> the lady who was in a wheelchair for 9 years and after a month on LDN now> uses a walker and got her license back. I will let you know the outcome.

____________________________________________________ IncrediMail - Email has finally evolved - Click Here

[Guest guest]

Hello Reg,

Yes, I do

understand that LDN doesn’t help everyone, I did say the people I know of,

meaning the personal experiences of people here in Australia. It is a shame

that it doesn’t work for everyone, I have read some of the negative posts, but

I still think the odds of improvement or stopping progression are much better

on LDN rather than any CRAB. I was on Betaferon and Avonex and they did nothing

to slow my progression, I was definitely heading for a wheelchair. I also spent

many thousands of dollars trying so many other things to try and combat this

awful disease. That’s why I’m so passionate about LDN – because it works for me

and many others. So I still think the word needs to get out there so people can

try it for themselves. Surely there can be no harm done. Even if it is placebo,

something is better than nothing at all.

I know you’re

probably thinking, we shouldn’t get everybody’s hopes up but don’t you think it’s

worth the risk? – Just my opinion.

Effie

-----Original

Message-----

From: Reg Kreil

[mailto:regkreil@...]

Sent: Thursday, 17 June 2004 12:06

AM

To:

low dose naltrexone

Subject: Re: [low dose naltrexone]

Re: American Neuro trashed LDN at Melbourne MS Conference

In all fairness I must say in response to Effie when

you say " everyone that you know about has had positive results " ,

Careful now,...you may need to know more people, there are some

that I am in touch with that would have loved to have gotten positive results,

but after months of faithfully trying 4.5mg.s and other amounts,and having

put up with the stiffness they have quit ldn and gone to different

treatments. Most of which I tried in the past with no good results too I

might add.

Sure there are mitigating factors that we have no

control over i.e. stress, infections, mercury fillings,

weather, etc. and I take these into account.

Now this ldn was compounded at the same place that I

get mine from and it has always been done up right,even once when I thought it

was not made right, it was,but there was other things going on that countered

the effects of ldn.

It seems to me that if I can talk one on one to

people that are starting on ldn. and keep encouraging them this will

greatly improve there symptoms.

If they are given the prescription and then left

alone,even knowing fully well that there may be stiffness and

sleeplessness at the onset,they will not always see stellar results. Even if

I am in contact continuously the outcome is in doubt!

In my books the building of endorphins is not a

given one,a person may not make the necessary amount as there may be a

glandular problem unknown to them working against the ldn.

We can only attest to how good ldn has been for us

after a full year or longer of use.

I believe this time frame will negate the placebo

effect if there was one.

Now I don't mean to jump on you but I just heard

from another person who saw no results at all after six months, and using the

same pills from the same compounder as him I am still doing fine!

I guess he won't be filling in the survey!He will

hardly talk to me!

O.K. I am frustrated, I want everyone to see the

same benefits as me. yet I know that won't happen!

Reg.

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

> Just some updates from here- Everyone who has begun LDN that I

know about

> has achieved positive effects. A guy from Perth has reported that

his

> numbness has completely gone within a few weeks from starting it.

He has

> RRMS. I am expecting a call shortly from the social worker who

told me about

> the lady who was in a wheelchair for 9 years and after a month on

LDN now

> uses a walker and got her license back. I will let you know the

outcome.

____________________________________________________

IncrediMail

- Email has finally evolved - Click Here

[Guest guest]

Yes it sure is and there is no risk!

What do you think the CRAB users think when they have (some of them anyway) injection site reactions,flue symptoms,or calcium loss? I am sure their nuero told them it was worth the risk,.........now with with ldn, I ask again. What risk?

Reg.

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

From: low dose naltrexone

Date: 06/16/04 09:25:31

low dose naltrexone

Subject: RE: [low dose naltrexone] Re: American Neuro trashed LDN at Melbourne MS Conference

Hello Reg,

Yes, I do understand that LDN doesn’t help everyone, I did say the people I know of, meaning the personal experiences of people here in Australia. It is a shame that it doesn’t work for everyone, I have read some of the negative posts, but I still think the odds of improvement or stopping progression are much better on LDN rather than any CRAB. I was on Betaferon and

IncrediMail - Email has finally evolved - Click Here

____________________________________________________ IncrediMail - Email has finally evolved - Click Here