Re: UCSF Clinical Trial my 2 cents.

[Guest guest]

In a message dated 1/19/2008 12:46:43 PM Eastern Standard Time, marcie_martin@... writes:

....He said they found that LDN helps depression; but, LDN did not help with MS symptoms

Hmmmm. The stated indication for LDN is to PREVENT EXACERBATION AND PROGRESSIONS. I wonder several things. Did they ask the right questions, did they use the right scale to measure the questions asked? Who were the investigators and what level of experience do they have with MS? What involvement do the investigators have with other so-called MS tx?

I wonder how we could get the results that we did on our "survey" and they didn't come close. Now it can be said that our "survey" was not rigorous, but we asked some simple questions, like HOW DO YOU FEEL? Have you had any exacerbation's? Real rocket science eh!

Now you can call me paranoid, but I have been in this business way to long to accept one study as gospel. Heck, most new drugs go thru years, yes years of study before they are recognized as an appropriate tx.

Lets wait for the study to be peer-reviewed and published. Then start a concerted effort aimed at the publishing magazine to justify the study.

Start the year off right. Easy ways to stay in shape in the new year.

[Guest guest]

Any clinical trial testing LDN for symptom improvement in Multiple

sclerosis is a waste of time and money. LDN is not given to MS

patients for symptom improvement, it is to be given to halt MS disease

progression and any LDN trial for MS less than 2 years will not show

if LDN is helping to stop MS disease progression, I'm not a doctor or

a rocket scientist or pharmacist but I do know that if you really read

the LDN website and comprehend what it says you don't need to be a

doctor or rocket scientist to know you're wasting money running a

trial on LDN for symptom improvement in MS.

[Guest guest]

That is why we were so frustrated with the UCSF trial crew. Their

reluctance to want to learn from my husband, who`s been on LDN for

three years, with no progression AND goes to the neuro dept there!!

How arrogant of them not to want to listen to his story and learn from

it. And the total reluctance to enter into any kind of conversation

with us at the conference we attended at the end of last year.

Educated intellegant doctors and scientists with closed minds - I just

dont get it.

Bev

>

>

> Any clinical trial testing LDN for symptom improvement in Multiple

> sclerosis is a waste of time and money. LDN is not given to MS

> patients for symptom improvement, it is to be given to halt MS

disease

> progression and any LDN trial for MS less than 2 years will not show

> if LDN is helping to stop MS disease progression, I'm not a doctor or

> a rocket scientist or pharmacist but I do know that if you really

read

> the LDN website and comprehend what it says you don't need to be a

> doctor or rocket scientist to know you're wasting money running a

> trial on LDN for symptom improvement in MS.

>

[Guest guest]

JAN - that is not what happens to the majority, though!! with most, the progression is stopped, even if the symptoms don't!!

marshirisStart the year off right. Easy ways to stay in shape in the new year.

[Guest guest]

>

>

> Any clinical trial testing LDN for symptom improvement in Multiple

> sclerosis is a waste of time and money. LDN is not given to MS

> patients for symptom improvement, it is to be given to halt MS

disease

> progression and any LDN trial for MS less than 2 years will not show

> if LDN is helping to stop MS disease progression, I'm not a doctor

or

> a rocket scientist or pharmacist but I do know that if you really

read

> the LDN website and comprehend what it says you don't need to be a

> doctor or rocket scientist to know you're wasting money running a

> trial on LDN for symptom improvement in MS.

>

I think you are wrong! LDN has done wonders for my wifes MS, she no

longer has fatigue, she sleeps for 9 hours a night & she will not go

running to the loo every hour, plus a lot of her aches & pains have

gone, no more fuzzy heads or ARE NONE OF THESE MS SYMPTONS???????? I

think LDN really help to easy symptons & as you say slow progression

[Guest guest]

Yes, one can get symptom improvement on LDN but if you read the LDN

website and speak with Dr. Bihari NOT EVERYONE gets symptom

improvement on LDN and symptom improvement is not LDN's main purpose

for people with MS, halting disease progression is LDN's main purpose

for those with MS. Approx. two-thirds of people with MS may see

symptom improvement on LDN, NO EVERYONE.

I got symptom improvement on LDN but there are some here who have only

had their MS disease progression to halt but got no symptom

improvement what-so-ever.

=======

> >

> >

> > Any clinical trial testing LDN for symptom improvement in Multiple

> > sclerosis is a waste of time and money. LDN is not given to MS

> > patients for symptom improvement, it is to be given to halt MS

> disease

> > progression and any LDN trial for MS less than 2 years will not

show

> > if LDN is helping to stop MS disease progression, I'm not a doctor

> or

> > a rocket scientist or pharmacist but I do know that if you really

> read

> > the LDN website and comprehend what it says you don't need to be a

> > doctor or rocket scientist to know you're wasting money running a

> > trial on LDN for symptom improvement in MS.

> >

>

> I think you are wrong! LDN has done wonders for my wifes MS, she no

> longer has fatigue, she sleeps for 9 hours a night & she will not go

> running to the loo every hour, plus a lot of her aches & pains have

> gone, no more fuzzy heads or ARE NONE OF THESE MS SYMPTONS???????? I

> think LDN really help to easy symptons & as you say slow progression

>

[Guest guest]

As with anything, there are exceptions to the rule. Your wife is one of the lucky ones. The main purpose of LDN is to halt or slow disease progression. Symptom improvement is a bonus. Congratulations to your wife! Marcie - PPMS 10 yrs roger <jan_295@...> wrote: >> > Any clinical trial testing LDN for symptom improvement in Multiple > sclerosis is a waste of time and money. LDN is not given to MS > patients for symptom improvement, it is to be given to halt MS disease > progression and any LDN trial for MS less than 2 years will not show > if LDN is helping to stop MS disease progression, I'm not a doctor or > a rocket scientist or pharmacist but I do know that if you really read > the LDN website and comprehend what it says you don't need to be a > doctor or rocket scientist to know you're wasting money running a > trial on LDN for symptom improvement in MS.>I think you are wrong! LDN has done wonders for my wifes MS, she no longer has fatigue, she sleeps for 9 hours a night & she

will not go running to the loo every hour, plus a lot of her aches & pains have gone, no more fuzzy heads or ARE NONE OF THESE MS SYMPTONS???????? I think LDN really help to easy symptons & as you say slow progression

[Guest guest]

LDN's main purpose is to halt/slow disease progression. Symptom relief

is a bonus not everyone experiences. Your wife is one of the fortunate

ones.

Art

Diagnosed with MS April 1988

Using LDN since March 2005

--

> I think you are wrong! LDN has done wonders for my wifes MS, she no

> longer has fatigue, she sleeps for 9 hours a night & she will not go

> running to the loo every hour, plus a lot of her aches & pains have

> gone, no more fuzzy heads or ARE NONE OF THESE MS SYMPTONS???????? I

> think LDN really help to easy symptons & as you say slow progression

>

[Guest guest]

I agree with 's assessment. Most people have no disease progression, and a majority of those people are fortunate enough to also have symptom improvement. However, as states there are people get no symptom relief but have their disease progression stopped. I think for MS, the MRI study will be helpful to show this as well. At least so far it seems to be the case from the experiences I have read.

Aletha

[low dose naltrexone] Re: UCSF Clinical Trial my 2 cents.

Yes, one can get symptom improvement on LDN but if you read the LDN website and speak with Dr. Bihari NOT EVERYONE gets symptom improvement on LDN and symptom improvement is not LDN's main purpose for people with MS, halting disease progression is LDN's main purpose for those with MS. Approx. two-thirds of people with MS may see symptom improvement on LDN, NO EVERYONE.I got symptom improvement on LDN but there are some here who have only had their MS disease progression to halt but got no symptom improvement what-so-ever.=======> >> > > > Any clinical trial testing LDN for symptom improvement in Multiple > > sclerosis is a waste of time and money. LDN is not given to MS > > patients for symptom improvement, it is to be given to halt MS > disease > > progression and any LDN trial for MS less than 2 years will not show > > if LDN is helping to stop MS disease progression, I'm not a doctor > or > > a rocket scientist or pharmacist but I do know that if you really > read > > the LDN website and comprehend what it says you don't need to be a > > doctor or rocket scientist to know you're wasting money running a > > trial on LDN for symptom improvement in MS.> >> > I think you are wrong! LDN has done wonders for my wifes MS, she no > longer has fatigue, she sleeps for 9 hours a night & she will not go > running to the loo every hour, plus a lot of her aches & pains have > gone, no more fuzzy heads or ARE NONE OF THESE MS SYMPTONS???????? I > think LDN really help to easy symptons & as you say slow progression>

[Guest guest]

-May I ask how long your wife took ldn before she saw improvements?

As well, was her sleep always good because mine has been a disaster

since I went up to 2mg/night from 1mg.

Thnaks,

Lorna

Any clinical trial testing LDN for symptom improvement in Multiple

> > sclerosis is a waste of time and money. LDN is not given to MS

> > patients for symptom improvement, it is to be given to halt MS

> disease

> > progression and any LDN trial for MS less than 2 years will not

show

> > if LDN is helping to stop MS disease progression, I'm not a

doctor

> or

> > a rocket scientist or pharmacist but I do know that if you really

> read

> > the LDN website and comprehend what it says you don't need to be

a

> > doctor or rocket scientist to know you're wasting money running

a

> > trial on LDN for symptom improvement in MS.

> >

>

> I think you are wrong! LDN has done wonders for my wifes MS, she no

> longer has fatigue, she sleeps for 9 hours a night & she will not

go

> running to the loo every hour, plus a lot of her aches & pains have

> gone, no more fuzzy heads or ARE NONE OF THESE MS SYMPTONS????????

I

> think LDN really help to easy symptons & as you say slow progression

>

[Guest guest]

I'm trying to find out what time ldn s/be taken in regards to sleep

aids. Which comes first? Anyone know?

> >

> >

> > Any clinical trial testing LDN for symptom improvement in

Multiple

> > sclerosis is a waste of time and money. LDN is not given to MS

> > patients for symptom improvement, it is to be given to halt MS

> disease

> > progression and any LDN trial for MS less than 2 years will not

show

> > if LDN is helping to stop MS disease progression, I'm not a

doctor

> or

> > a rocket scientist or pharmacist but I do know that if you really

> read

> > the LDN website and comprehend what it says you don't need to be

a

> > doctor or rocket scientist to know you're wasting money running

a

> > trial on LDN for symptom improvement in MS.

> >

>

> I think you are wrong! LDN has done wonders for my wifes MS, she no

> longer has fatigue, she sleeps for 9 hours a night & she will not

go

> running to the loo every hour, plus a lot of her aches & pains have

> gone, no more fuzzy heads or ARE NONE OF THESE MS SYMPTONS????????

I

> think LDN really help to easy symptons & as you say slow progression

>

[Guest guest]

Aletha,

I sent you an e-mail but did not hear back from you yet. I have read some

e-mails where people have upped the dose to 5 or 6mg for a few days when they

were having a flare. Do you think that might help me. My pain is still bad down

my whole right leg.

Carol

--------- [low dose naltrexone] Re: UCSF Clinical Trial my 2 cents.

>

>

>

> Yes, one can get symptom improvement on LDN but if you read the LDN

> website and speak with Dr. Bihari NOT EVERYONE gets symptom

> improvement on LDN and symptom improvement is not LDN's main purpose

> for people with MS, halting disease progression is LDN's main purpose

> for those with MS. Approx. two-thirds of people with MS may see

> symptom improvement on LDN, NO EVERYONE.

>

> I got symptom improvement on LDN but there are some here who have only

> had their MS disease progression to halt but got no symptom

> improvement what-so-ever.

>

>

> =======

>

> > >> > > > Any clinical trial testing LDN for symptom improvement in Multiple > > sclerosis is a waste of time and money. LDN is not given to MS > > patients for symptom improvement, it is to be given to halt MS > disease > > progression and any LDN trial for MS less than 2 years will not show > > if LDN is helping to stop MS disease progression, I'm not a doctor > or > > a rocket scientist or pharmacist but I do know that if you really > read > > the LDN website and comprehend what it says you don't need to be a > > doctor or rocket scientist to know you're wasting money running a > > trial on LDN for symptom improvement in MS.> >> > I think you are wrong! LDN has done wonders for my wifes MS, she no > longer has fatigue, she sleeps for 9 hours a night & she will not go > running to the loo every hour, plus a lot of her aches & pains have > gone, no more fuzzy heads or ARE NONE OF THESE MS SYMPTONS???????? I > think LDN really help to easy symptons & as you say slow progression>

[Guest guest]

We have several problems with symptom relief.

1. Are the symptoms MS related? (the biggie)

2. How do you define "relief" (no not rolaids)?

Now before any one gets upset, I think that the UC study was sorta ok FROM WHAT I KNOW. I don't know much, nor was I or anyone else I know included in the design. Now don't get me wrong, I have no ego in this but you would have thought that one of the folks who has some experence in the drug would have been included, contacted etc.

Lets wait and see what comes up.

Dr.SkipStart the year off right. Easy ways to stay in shape in the new year.

[Guest guest]

Well, the power of the internet. I got a copy of the scale used. Its a depression scale. Now if what you are measuring is depression, this is a good one, but for a chronic medication, for a chronic disease this ain't close. My daddy always said, there are no stupid questions, just those unasked. Well after 58 years of listening to that, I have found a whole list of stupid questions! The unfortunate thing is that the folks behind the study had high hopes for this. I feel bad for them. They worked for several years to put the money together, had all sorts of fund raisers, we had them listed on every rx for LDN.

Dr.SkipStart the year off right. Easy ways to stay in shape in the new year.

[Guest guest]

well it's possible that not all pat.with ms that got ldn have had improvement in ms symptom,but it'is also true that i.have got many.

my life till on june was terrible,every day completely tired,bladder empting quite impossible going to the wc for that was like a nightmare

since sectember that i started getting ldn sverything changed,and also now i must reconize that my lifestyle is mutch better.

so what should i think that it is only placebo effect,i do not belive that,and i'm sure that if i had continued to get betaseron or immunosopressant as the neurologist wanted me to get,now i will be worst.

when someone ear story like this what should he think?who say that is mad or probably there is something true considering that ldn helps in ms symptom.

i think the second sentence is the one correct.

my best

emiliano

----- Messaggio originale -----Da: roger <jan_295@...>A: low dose naltrexone Inviato: Domenica 20 gennaio 2008, 12:02:35Oggetto: [low dose naltrexone] Re: UCSF Clinical Trial my 2 cents.

>> > Any clinical trial testing LDN for symptom improvement in Multiple > sclerosis is a waste of time and money. LDN is not given to MS > patients for symptom improvement, it is to be given to halt MS disease > progression and any LDN trial for MS less than 2 years will not show > if LDN is helping to stop MS disease progression, I'm not a doctor or > a rocket scientist or pharmacist but I do know that if you really read > the LDN website and comprehend what it says you don't need to be a > doctor or rocket scientist to know you're wasting money running a > trial on LDN for symptom improvement in MS.>I think you are wrong! LDN has done

wonders for my wifes MS, she no longer has fatigue, she sleeps for 9 hours a night & she will not go running to the loo every hour, plus a lot of her aches & pains have gone, no more fuzzy heads or ARE NONE OF THESE MS SYMPTONS???? ???? I think LDN really help to easy symptons & as you say slow progression

L'email della prossima generazione? Puoi averla con la nuova

[Guest guest]

Indeed Dr.Skip - thats why we were horrified that no one on the trial

was remotely interested in talking to my husband (one of

yours for nearly three years) and we live just 10 mins away from the

hospital and he is a patient there! In fact, the guy in charge of

the trial (Dr.Cree??) almost ran away from us when we tried to corner

him at a conference to politely discuss it all. would have

been so happy to give up any amount to his time for them to ask any

questions.

Bev

-- In low dose naltrexone , slenzrph@... wrote:

>

> We have several problems with symptom relief.

> 1. Are the symptoms MS related? (the biggie)

> 2. How do you define " relief " (no not rolaids)?

>

> Now before any one gets upset, I think that the UC study was sorta

ok FROM

> WHAT I KNOW. I don't know much, nor was I or anyone else I know

included in the

> design. Now don't get me wrong, I have no ego in this but you

would have

> thought that one of the folks who has some experence in the drug

would have been

> included, contacted etc.

>

> Lets wait and see what comes up.

>

> Dr.Skip

>

>

>

> **************Start the year off right. Easy ways to stay in

shape.

> http://body.aol.com/fitness/winter-exercise?

NCID=aolcmp00300000002489

>

[Guest guest]

So, basically, in my simple mind, this trial set LDN up to fail. At least for the purpose that it was intended...to slow or halt disease progression. That's too bad. One step forward, two steps back. Marcie slenzrph@... wrote: Well, the power of the internet. I got a copy of the scale used. Its a depression scale. Now if what you are measuring is depression, this is a good one, but for a chronic

medication, for a chronic disease this ain't close. My daddy always said, there are no stupid questions, just those unasked. Well after 58 years of listening to that, I have found a whole list of stupid questions! The unfortunate thing is that the folks behind the study had high hopes for this. I feel bad for them. They worked for several years to put the money together, had all sorts of fund raisers, we had them listed on every rx for LDN. Dr.Skip Start the year off right. Easy ways to stay in shape in the new year.

[Guest guest]

All I know is that my MS symptoms continued to progress when I was injecting Rebif for a year and prior to that Copaxone for several years. Since I've been taking LDN for such a short time (October 18, 2007) I feel that my symptoms have improved or stabilized .The quality of my life is dramatically better. The study is academic to me. Study or no study this LDN is helping me. [low dose naltrexone] Re: UCSF Clinical Trial my 2 cents.

Indeed Dr.Skip - thats why we were horrified that no one on the trial

was remotely interested in talking to my husband (one of

yours for nearly three years) and we live just 10 mins away from the

hospital and he is a patient there! In fact, the guy in charge of

the trial (Dr.Cree??) almost ran away from us when we tried to corner

him at a conference to politely discuss it all. would have

been so happy to give up any amount to his time for them to ask any

questions.

Bev

-- In low dose naltrexone, slenzrph@... wrote:

>

> We have several problems with symptom relief.

> 1. Are the symptoms MS related? (the biggie)

> 2. How do you define "relief" (no not rolaids)?

>

> Now before any one gets upset, I think that the UC study was sorta

ok FROM

> WHAT I KNOW. I don't know much, nor was I or anyone else I know

included in the

> design. Now don't get me wrong, I have no ego in this but you

would have

> thought that one of the folks who has some experence in the drug

would have been

> included, contacted etc.

>

> Lets wait and see what comes up.

>

> Dr.Skip

>

>

>

> ************ **Start the year off right. Easy ways to stay in

shape.

> http://body. aol.com/fitness/ winter-exercise?

NCID=aolcmp00300000 002489

>

Looking for last minute shopping deals? Find them fast with Search.

[Guest guest]

> Yes, but if only one person gains symptom improvement, then a

trial is not a waste of money, but I think you will find that loads

of people are better in one way or another on ldn. We all know its

to stop progression, but it offers so much other help to lots of

people, I cant think why any sort of trial is a waste of money.

> > >

> > >

> > > Any clinical trial testing LDN for symptom improvement in

Multiple

> > > sclerosis is a waste of time and money. LDN is not given to

MS

> > > patients for symptom improvement, it is to be given to halt MS

> > disease

> > > progression and any LDN trial for MS less than 2 years will

not

> show

> > > if LDN is helping to stop MS disease progression, I'm not a

doctor

> > or

> > > a rocket scientist or pharmacist but I do know that if you

really

> > read

> > > the LDN website and comprehend what it says you don't need to

be a

> > > doctor or rocket scientist to know you're wasting money

running a

> > > trial on LDN for symptom improvement in MS.

> > >

> >

> > I think you are wrong! LDN has done wonders for my wifes MS, she

no

> > longer has fatigue, she sleeps for 9 hours a night & she will

not go

> > running to the loo every hour, plus a lot of her aches & pains

have

> > gone, no more fuzzy heads or ARE NONE OF THESE MS

SYMPTONS???????? I

> > think LDN really help to easy symptons & as you say slow

progression

> >

>

[Guest guest]

I agree with .

Aletha

[low dose naltrexone] Re: UCSF Clinical Trial my 2 cents.

> Yes, but if only one person gains symptom improvement, then a trial is not a waste of money, but I think you will find that loads of people are better in one way or another on ldn. We all know its to stop progression, but it offers so much other help to lots of people, I cant think why any sort of trial is a waste of money.> > >> > > > > > Any clinical trial testing LDN for symptom improvement in Multiple > > > sclerosis is a waste of time and money. LDN is not given to MS > > > patients for symptom improvement, it is to be given to halt MS > > disease > > > progression and any LDN trial for MS less than 2 years will not > show > > > if LDN is helping to stop MS disease progression, I'm not a doctor > > or > > > a rocket scientist or pharmacist but I do know that if you really > > read > > > the LDN website and comprehend what it says you don't need to be a > > > doctor or rocket scientist to know you're wasting money running a > > > trial on LDN for symptom improvement in MS.> > >> > > > I think you are wrong! LDN has done wonders for my wifes MS, she no > > longer has fatigue, she sleeps for 9 hours a night & she will not go > > running to the loo every hour, plus a lot of her aches & pains have > > gone, no more fuzzy heads or ARE NONE OF THESE MS SYMPTONS???????? I > > think LDN really help to easy symptons & as you say slow progression> >>