Re: Re: GERALD MY REPLY - FROM KELLIE re: regarding the letter

[Guest guest]

GERALD .. very good points made there..but we live in no such perfect

world...reality is - Neuro's want to see a full on clinical trial study

before they would really look at this'...all about stats and

evidence...let's not forget Neuro's are a strange breed ..a new species? lol

(in my personal observation of them) they think in their own brilliant

analytical way (they do not seem to think like us lower homo sapiens (non

neurologist's) re: lousy bedside manner and little emotion or feeling ie;

empathy! in their dealings with patients ...it's all the scientific

thinking and data they relate to - HENCE TO MOVE ON TRIAL we will have much

wider acceptance and they will have to stand up and pay attention...Neuro's

will be placated.... and the help will at last be widespread to so many

other's thru acceptance of LDN by trial evidence...but I definately agree on

your point's made...

just my thoughts gerald..take care

kellie in sydney

(dont forget " It's all in our minds " (my neuro comment) ...if it is who

cares!...whatever works for you I say....results are already in aren't

they?.... and so many other fellow LDNer's from this site!)

Original Message -----

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

<low dose naltrexone >

Sent: Wednesday, May 26, 2004 11:48 AM

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

>

>

>

>

>

>