Re: Re: regarding the letter

[Guest guest]

I would like to say that, in my opinion, , clear & concise, factual personal

accounts, like this one from Tom B. are to the point & have an impressive

authenticity about them which encourages the mind to focus on the appropiate

relevant issues. ( Not so sure about Titanics & Arks! -possibly too

selective & liable to lead off at tangents? Though it is an interesting

allegory when you think about it!....)

Changing context somewhat, re. my posting of a few days ago which suggested

that focussing on organizing the dissemination of info which clearly

emphasizes the effectiveness, low dose safety, ease of use & cheapness of

LDN might be effective course.

In my post, I also questioned the need for further LDN testing & also the

ethics of knowingly giving or even ADVOCATING the giving of a mere placebo

to sufferers of degenerative or potentially lethal diseases, when one knows

there is a effective, safe, & cheap treatment already available: I note that

though there were responses (Yash.esp..) focussing on the potential

advantages of clinical testing (which are fairly obvious IF one ignores the

questions of urgent need AND the unethical nature of knowing withholding an

effective already available treatment,) the silence of the keen proponents

of clinical testing re.these ethical problems was....DEAFENING!!! ( & no LDN

users volunteered for inclusion in the placebo group

.. -Surprise!......)

Giving a placebo to someone in this situation is like knowingly giving

someone with a dangerouus fire to deal with a dummy fire extinguisher.

Doubtless R & D will continue & anyway! So again I suggest that it might now

be helpful for those of us who really know about LDN, from the reality of

our own experience to focus on making very clear what is already known &

happenning ( & not happening!) with LDN & so increase it`s profile & usage

that way.

(If anyone knows of clinical testing procedures that are neither time

consuming nor dependent on the use of placebo controls, would you please be

kind enough to let me know?!)

Otherwise, I suggest that " we who know " from our own usage continue to

organize, clarify & amplify the information that was powerful enough &

convincing enough for us to try using LDN in the first place! -Even though,

in some cases (myself included), we had previously been dis-inclined to use

ANY pharmaceuticals!!! -If the info was already strong enough to convince

even us, then what`s the problem?

There is an old illustration about " a finger pointing at the moon " , the

purpose being to draw attention to the moon, if we simply stare at the

finger, we have missed the point!

There are now very many fingers pointing, I hope we aren`t going to get

lost in reinforcing the apparently chronic instutionalized habit of staring

at fingers!

Thank you,

Gerald

From: " Bayuk " <tbayuk@...>

<low dose naltrexone >

Sent: Tuesday, May 25, 2004 4:05 PM

Subject: Re: [low dose naltrexone] Re: regarding the letter

> Aegis,

> If you don't mind I would also like to add my

> " Two Cents " . I am not a professional by any means. However, I have been

> diagnosed with MS since 1984. Since that time I have been under the care

of

> the neurology dept. at the Lahey Clinic in Burlington, Ma. I had the same

> doc for 16 yrs. until she retired 3 or 4 yrs. ago. Back in 1984 there

were

> no treatments for ms other than steroids which I refused to take. Some

time

> in 1986 or 87 the " Beta-Serons " became available. I also refused those

due

> to the " Fine Print " or so-called side effects.

>

> Formal studies as you describe now conclusively show that these treatments

> are marginal at best and still in fact produce adverse side effects for

many

> that take them.

>

> Two yrs. ago I started looking into " LDN " . It took me almost a year to

> finally decide to take LDN. I have " Primary Progressive MS " . The very

> first night of taking LDN the following occurred: 1. Increased sensation

and

> lessening of numbness in my feet and ankles. 2. Increased leg strength

and

> improvement of balance. 3. Significant lessenoning of urinary urgency and

> frequency. I had to get up ONCE during the night to urinate, it had been

> 3-5 times every night for several years.

>

> No further improvements have occurred other than the fact that I have not

> gotten worse with anything in the past year and those improvements

mentioned

> have remained constant.

>

> I have been in touch with several hundred ms'er's that have had similar

> experiences. The simple fact of the matter is that I personally

experienced

> more improvement in one day than I had experienced in 19 yrs. of

recognized

> and accepted medicine. The only adverse side effect to date was 1 week of

> sleeping pattern interruption.

>

> My questions to you are: 1. Why such incredible resistance to this

> harmless and inexpensive solution for so many? 2. When will the

" Experts "

> at least take a look? 3. Could the answer be " Pride " or the lack of

money

> involved?

>

> Remember this: " PROFESSIONALS BUILT THE TITANIC............AMATEURS BUILT

T

> HE ARK "

> Regards,

> Tom

[Guest guest]

I share your concern about the ethics of giving a placebo to someone in need

of real medicine. In this case we all believe LDN IS an effective

treatment, so who gets the placebo? It would be difficult to sell anyone on

the idea of simply providing LDN to a large group of people and tracking

their progress. That doesn't provide the control group the scientists are

going to want.

But is this another situation where the cost to the individual is outweighed

by the overall benefit for many? That's another concept that really

troubles me. That concept is great if you're one of the " many " and not the

individual...

There have been clinical trials in which the drug being trialed was so

effective the trials were ended so all participants could be given the drug.

I wish I could name one right now, but I doubt I'm in my right mind since

I'm pretty fatigued.

Boy, this letter didn't add much to the discussion!

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

From: " gerald rollason " <grollason@...>

<low dose naltrexone >

Sent: Tuesday, May 25, 2004 6:48 PM

Subject: Re: [low dose naltrexone] Re: regarding the letter

> I would like to say that, in my opinion, , clear & concise, factual

personal

> accounts, like this one from Tom B. are to the point & have an impressive

> authenticity about them which encourages the mind to focus on the

appropiate

> relevant issues. ( Not so sure about Titanics & Arks! -possibly too

> selective & liable to lead off at tangents? Though it is an interesting

> allegory when you think about it!....)

>

> Changing context somewhat, re. my posting of a few days ago which

suggested

> that focussing on organizing the dissemination of info which clearly

> emphasizes the effectiveness, low dose safety, ease of use & cheapness of

> LDN might be effective course.

> In my post, I also questioned the need for further LDN testing & also the

> ethics of knowingly giving or even ADVOCATING the giving of a mere

placebo

> to sufferers of degenerative or potentially lethal diseases, when one

knows

> there is a effective, safe, & cheap treatment already available: I note

that

> though there were responses (Yash.esp..) focussing on the potential

> advantages of clinical testing (which are fairly obvious IF one ignores

the

> questions of urgent need AND the unethical nature of knowing withholding

an

> effective already available treatment,) the silence of the keen

proponents

> of clinical testing re.these ethical problems was....DEAFENING!!! ( & no

LDN

> users volunteered for inclusion in the placebo group

> . -Surprise!......)

>

> Giving a placebo to someone in this situation is like knowingly giving

> someone with a dangerouus fire to deal with a dummy fire extinguisher.

>

> Doubtless R & D will continue & anyway! So again I suggest that it might

now

> be helpful for those of us who really know about LDN, from the reality of

> our own experience to focus on making very clear what is already known &

> happenning ( & not happening!) with LDN & so increase it`s profile & usage

> that way.

>

> (If anyone knows of clinical testing procedures that are neither time

> consuming nor dependent on the use of placebo controls, would you please

be

> kind enough to let me know?!)

>

> Otherwise, I suggest that " we who know " from our own usage continue to

> organize, clarify & amplify the information that was powerful enough &

> convincing enough for us to try using LDN in the first place! -Even

though,

> in some cases (myself included), we had previously been dis-inclined to

use

> ANY pharmaceuticals!!! -If the info was already strong enough to convince

> even us, then what`s the problem?

>

> There is an old illustration about " a finger pointing at the moon " , the

> purpose being to draw attention to the moon, if we simply stare at the

> finger, we have missed the point!

> There are now very many fingers pointing, I hope we aren`t going to get

> lost in reinforcing the apparently chronic instutionalized habit of

staring

> at fingers!

>

> Thank you,

>

> Gerald

>

> From: " Bayuk " <tbayuk@...>

> <low dose naltrexone >

> Sent: Tuesday, May 25, 2004 4:05 PM

> Subject: Re: [low dose naltrexone] Re: regarding the letter

>

>

> > Aegis,

> > If you don't mind I would also like to add my

> > " Two Cents " . I am not a professional by any means. However, I have

been

> > diagnosed with MS since 1984. Since that time I have been under the

care

> of

> > the neurology dept. at the Lahey Clinic in Burlington, Ma. I had the

same

> > doc for 16 yrs. until she retired 3 or 4 yrs. ago. Back in 1984 there

> were

> > no treatments for ms other than steroids which I refused to take. Some

> time

> > in 1986 or 87 the " Beta-Serons " became available. I also refused those

> due

> > to the " Fine Print " or so-called side effects.

> >

> > Formal studies as you describe now conclusively show that these

treatments

> > are marginal at best and still in fact produce adverse side effects for

> many

> > that take them.

> >

> > Two yrs. ago I started looking into " LDN " . It took me almost a year to

> > finally decide to take LDN. I have " Primary Progressive MS " . The very

> > first night of taking LDN the following occurred: 1. Increased sensation

> and

> > lessening of numbness in my feet and ankles. 2. Increased leg strength

> and

> > improvement of balance. 3. Significant lessenoning of urinary urgency

and

> > frequency. I had to get up ONCE during the night to urinate, it had

been

> > 3-5 times every night for several years.

> >

> > No further improvements have occurred other than the fact that I have

not

> > gotten worse with anything in the past year and those improvements

> mentioned

> > have remained constant.

> >

> > I have been in touch with several hundred ms'er's that have had similar

> > experiences. The simple fact of the matter is that I personally

> experienced

> > more improvement in one day than I had experienced in 19 yrs. of

> recognized

> > and accepted medicine. The only adverse side effect to date was 1 week

of

> > sleeping pattern interruption.

> >

> > My questions to you are: 1. Why such incredible resistance to this

> > harmless and inexpensive solution for so many? 2. When will the

> " Experts "

> > at least take a look? 3. Could the answer be " Pride " or the lack of

> money

> > involved?

> >

> > Remember this: " PROFESSIONALS BUILT THE TITANIC............AMATEURS

BUILT

> T

> > HE ARK "

> > Regards,

> > Tom

>

>

>

>

>

>