Re: My turn to rant

[Guest guest]

I'm going to make myself unpoular here, but what the heck. I've checked Dr

Bihari (of LDN fame) in our medical library, and he has published nothing

whatsoever in the last 10 years in any reputable medical journals (in fact,

nothing at all since 1995). That means that he alone is attributing clinical

success to LDN without making his data available in a transparent form to the

scientific community. This type of professional behaviour is highly suspect. Any

self-respecting clinician or scientist would not advertise success on a website

without publishing first in peer-reviewed journals. His CV is very uninspiring.

It's easy to impress the lay public, particularly if they are desperate for a

cure .It reminds me of the furore associated with latrile (from apricot kernels)

as a possible anticancer drug. Patients were desperate to get their hands on

this so-called cure. 20 years down the line, it is clear that it has no

anti-cancer properties, and in fact turns out to be potentially

dangerous due to cyanide production.

While I'm all in favour of trying something new while the jury is still out,

it strikes me in this case to be somewhat permature. With all these illnesses

(PLS included) people's progression is so variable that anyone may experience

anything, including benefit arising from placebo effects. I've e mailed my

neurologist to ask him his opinion. I'll let you know what he says

(anonymously).

In my last post, I did try to attach a file of a paper from " Medical

Hypothesis " pushing for clinical trials on LDN. It doesn't seem to have worked.

If anyone wants a copy, I'll email it to them direct.

Barbara

---------------------------------

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[Guest guest]

Thanks Barbara...it is good to see both sides of the story. Mind

you...sometimes I wonder...'what have I got to lose?' Placebo

effects are OK too sometimes lol. But I really do appreciate the

information!

Di..PLS....Canada

>

> I'm going to make myself unpoular here, but what the heck. I've

checked Dr Bihari (of LDN fame) in our medical library, and he has

published nothing whatsoever in the last 10 years in any reputable

medical journals (in fact, nothing at all since 1995). That means

that he alone is attributing clinical success to LDN without making

his data available in a transparent form to the scientific

community. This type of professional behaviour is highly suspect.

Any self-respecting clinician or scientist would not advertise

success on a website without publishing first in peer-reviewed

journals. His CV is very uninspiring. It's easy to impress the lay

public, particularly if they are desperate for a cure .It reminds me

of the furore associated with latrile (from apricot kernels) as a

possible anticancer drug. Patients were desperate to get their hands

on this so-called cure. 20 years down the line, it is clear that it

has no anti-cancer properties, and in fact turns out to be

potentially

> dangerous due to cyanide production.

>

> While I'm all in favour of trying something new while the jury

is still out, it strikes me in this case to be somewhat permature.

With all these illnesses (PLS included) people's progression is so

variable that anyone may experience anything, including benefit

arising from placebo effects. I've e mailed my neurologist to ask

him his opinion. I'll let you know what he says (anonymously).

>

> In my last post, I did try to attach a file of a paper

from " Medical Hypothesis " pushing for clinical trials on LDN. It

doesn't seem to have worked. If anyone wants a copy, I'll email it

to them direct.

>

> Barbara

>

>

> ---------------------------------

> Yahoo! Messenger NEW - crystal clear PC to PC calling worldwide

with voicemail

>

>

[Guest guest]

Hi Barbara,

No, you certainly shouldn't make yourself unpopular as your questions

are quite reasonable and if we can't have informed discussion/debate

there is something wrong. On the lowdosenaltrexone Yahoo group (similar

to PLS-FRIENDS) the question about Dr Bihari and publishing has been

asked before some time in the 2+ years I have been on there. I can't

remember now what the answer was but I do recall it was quite a valid

reason. I will try searching for it but given the volume of posts (more

than on PLS-FRIENDS) it will be a needle in a haystack search........

You are in fact dead wrong in stating that he advertises his success on

a website, in fact from all I have read he has not even got a computer

with internet access as he is too busy. (He is also well into his 70s I

believe.) The only 'advertising' is from all those LDN is helping and

he gets nothing out of it. There is also Dr Bob Lawrence there in the

UK, a medical doctor with MS himself, who is a very strong proponent of

LDN based on what it has done for him.

There have been moves to get full scale clinical testing done on LDN but

as most people are aware it costs millions to do such testing and no

pharmaceutical company is prepared to do it. Why? Because naltrexone

has been around so long that it is out of patent, meaning anyone is free

to manufacture and market it. Therefore if a pharma company did spend

lots of money on testing it there will be no return on investment for

their shareholders because all the other companies would get a free

ride. There is a hospital somewhere in the US doing a big study on LDN

and Crohn's Disease for which anecdotal evidence is very positive and

their early results have apparently also been very positive.

You are correct in that the evidence is pretty much anecdotal, but boy,

the weight of that anecdotal evidence is almost overwhelming and along

the way there are a number of examples of more specific evidence. As I

have said before on here, I strongly urge anyone considering using LDN

to join the lowdosenaltrexone group here on Yahoo, at least for a month

or so and read all the posts so you have a more informed view of it. It

is not a " rose coloured glasses " group as there are some people who

write in to say it doesn't seem to be working for them, or is possibly

causing nausea or some other minor problem (usually due to their choice

of filler, not the naltrexone) and based on their experiences others

make suggestions to try to help them.

I am certainly aware of the placebo effect but based on my own

experience and that of so many others, including two long term PALS

whose judgement of their own conditions I have come to trust over many

years of contact with them, I would have to say LDN works. There are

just too many success stories for it to be placebo effect or

coincidental. There are others on here finding it successfully slowing

their progression, Eugene being another that I wasn't aware of till his

post a little earlier. Even his neuro agrees that his progression has

slowed. He is a very lucky man to have a neuro open minded enough to

prescribe it for him! Most automatically dismiss it without regard for

their clients. They are used to dealing with things like MS drugs which

can cost $1,000 or more per month and can have horrific side effects and

little effectiveness. They find it impossible to believe that something

so cheap and harmless could be more effective than their expensive drugs

(which often earn them nice little 'rewards' from the pharma companies

like overseas trips etc.). Nothing in it for them with LDN.

Of course, nothing works for 100% of people. I repeat that it should be

stuck with for around 9 months before making the decision that it

doesn't seem to be working as it can take that long in some people. My

walking improved after a week or two but it was only at about the 9

month mark that my urinary urgency improved. It is still not perfect

but I would hate to go back to where I was before that now!! There are

also people for whom the effect is so gradual and subtle that they don't

realise it is working. Just the other day I received an email from

someone with ALS over here who had taken LDN for about six months and

decided it wasn't working so had stopped taking it. In the last 3

months she realised how much it had helped when her progression returned

so was desperately trying to get more.

My only concern in this is that I know there is something out there

which can slow or even stop most of us progressing and as a bonus it is

cheap and has no side effects (apart from maybe some very minor ones for

a week or two). I hate reading about people progressing and feeling

they can do nothing about it because that is what their neuro/GP told

them would happen. Is their neuro/GP the one who has to wake up every

day knowing that formerly simple things will now take forever or already

be impossible? Is it they who spend their days now trying to adapt to

each lost bit of functionality only to be presented with new and more

challenging ones before you do? I don't think so..........

If people are prepared to accept that fate just because someone told

them that's how it is, then that's their choice. All I am saying is

there is something out there for us now that could change all that.

Take charge of your life and give it a go (for at least 9 months). If

it doesn't work you can say " At least I tried it " but I think there is

far more chance you will be thinking " Boy, I'm glad I found LDN!! " .

Barbara Durkacz wrote:

> I'm going to make myself unpoular here, but what the heck. I've

> checked Dr Bihari (of LDN fame) in our medical library, and he has

> published nothing whatsoever in the last 10 years in any reputable

> medical journals (in fact, nothing at all since 1995). That means that

> he alone is attributing clinical success to LDN without making his

> data available in a transparent form to the scientific community. This

> type of professional behaviour is highly suspect. Any self-respecting

> clinician or scientist would not advertise success on a website

> without publishing first in peer-reviewed journals. His CV is very

> uninspiring. It's easy to impress the lay public, particularly if they

> are desperate for a cure .It reminds me of the furore associated with

> latrile (from apricot kernels) as a possible anticancer drug. Patients

> were desperate to get their hands on this so-called cure. 20 years

> down the line, it is clear that it has no anti-cancer properties, and

> in fact turns out to be potentially

> dangerous due to cyanide production.

>

> While I'm all in favour of trying something new while the jury is

> still out, it strikes me in this case to be somewhat permature. With

> all these illnesses (PLS included) people's progression is so variable

> that anyone may experience anything, including benefit arising from

> placebo effects. I've e mailed my neurologist to ask him his opinion.

> I'll let you know what he says (anonymously).

>

> In my last post, I did try to attach a file of a paper from " Medical

> Hypothesis " pushing for clinical trials on LDN. It doesn't seem to

> have worked. If anyone wants a copy, I'll email it to them direct.

>

> Barbara