Re: For Onyxpect RE:Off-label Scripts

[Guest guest]

Onyxpect,

I suggest that you try a forward-thinking doctor associated with a teaching hospital. I am PPMS. I found a doctor (Internal Medicine) who is with a teaching hospital who had no problem prescribing LDN for me. He said there were no other drug interactions and that I didn't have anything to lose by trying. I had printed up info from the internet and let him look it over. I have had enough improvement to continue using it.

Best of luck to you!

Marcie (PPMS)

[Guest guest]

isn't amantidine, provigil, etc... prescribed for MS " OFF-LABEL " what's the

difference?

bonesfour

>From: " onyxpect " <cub@...>

>Reply-low dose naltrexone

>low dose naltrexone

>Subject: [low dose naltrexone] Re: For Onyxpect RE:Off-label Scripts

>Date: Wed, 28 Apr 2004 10:00:54 -0000

>

>Friday;

>

>Naltrexone is *officially* used primarily (only?) as an assist for

>detoxifying addicts to narcotics, and as a maintenance drug to prevent

>relapse by preventing such drugs from having their expected effects (a

>practice I personally find deplorable and immoral).

>

>Prescribing naltrexone for any other purpose would, therefore, be

>termed " off-label " . The " label " , in this case, is the official

>position of the governing body or government agency that oversees

>health care in a given jurisdiction.

>

>As another example, caffeine does have clinical value for asthma

>(rarely used for this any more, and headache, and to reduce drowsiness

>*only* when compounded with drugs which *cause* drowsiness.

>

>So your morning cup of coffee, whether you use it as a laxative or as

>a pick-me-up, is, in most jurisdictions, an " off-label " use of

>caffeine, since it is not a use for which there is an

>officially-accepted and well-understood medical benefit.

>

>-Cub-

>

>

>--- In low dose naltrexone , " Friday " <paraschick@y...>

>wrote:

> > Hi Onyxpect

> >

> > I dont understand the medical protocol to system there, and was

> > wondering if you would explain what " OFF-LABEL PRESCRIBING " means

> > please?

> >

> > Kind Regards

> >

> > Friday

> >

>

>

_________________________________________________________________

Check out the coupons and bargains on MSN Offers! http://youroffers.msn.com

[Guest guest]

As far as I know in Canada, off label use is quite legal, and done for a lot of drugs where there may be some cross-over benefits between drugs that are somewhat similar.

Tom from Canada

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

From: Bones Four

low dose naltrexone

Sent: Saturday, May 01, 2004 5:46 PM

Subject: RE: [low dose naltrexone] Re: For Onyxpect RE:Off-label Scripts

isn't amantidine, provigil, etc... prescribed for MS "OFF-LABEL" what's the difference?bonesfour>From: "onyxpect" <cub@...>>Reply-low dose naltrexone >low dose naltrexone >Subject: [low dose naltrexone] Re: For Onyxpect RE:Off-label Scripts>Date: Wed, 28 Apr 2004 10:00:54 -0000>>Friday;>>Naltrexone is *officially* used primarily (only?) as an assist for>detoxifying addicts to narcotics, and as a maintenance drug to prevent>relapse by preventing such drugs from having their expected effects (a>practice I personally find deplorable and immoral).>>Prescribing naltrexone for any other purpose would, therefore, be>termed "off-label". The "label", in this case, is the official>position of the governing body or government agency that oversees>health care in a given jurisdiction.>>As another example, caffeine does have clinical value for asthma>(rarely used for this any more, and headache, and to reduce drowsiness>*only* when compounded with drugs which *cause* drowsiness.>>So your morning cup of coffee, whether you use it as a laxative or as>a pick-me-up, is, in most jurisdictions, an "off-label" use of>caffeine, since it is not a use for which there is an>officially-accepted and well-understood medical benefit.>>-Cub->>>--- In low dose naltrexone , "Friday" <paraschick@y...>>wrote:> > Hi Onyxpect> >> > I dont understand the medical protocol to system there, and was> > wondering if you would explain what "OFF-LABEL PRESCRIBING" means> > please?> >> > Kind Regards> >> > Friday> >>>_________________________________________________________________Check out the coupons and bargains on MSN Offers! http://youroffers.msn.com

[Guest guest]

At 01:33 PM 5/2/04, you wrote:

>As far as I know in Canada, off label use is quite legal, and done for a lot of

drugs where there may be some cross-over benefits between drugs that are

somewhat similar.

>

>Tom from Canada

Legal but risky. Doctors have their governing bodies to answer to, and it was

made painfully clear by one of the best people in the province here that any

doctor prescribing a substance typically used only in clinical opiate detox

would not be viewed favorably by his/her peers. An honest explanation of the

reasons for prescribing it, particularly in my case, could I imagine place that

doctor at considerable peril. You may have latched onto someone whose

reputation can take some bashing without damage. But surely you also remember

the fallout from Dilantin, and the still-reverberating sanction against Canada's

top pain management specialist.

Naltrexone has a moral stigma just as surely as morphine does. If this was a

substance that was normally used for asthma treatment, and affected any other

neurotransmitter in the same way, I'm sure I'd be having very few problems

finding someone to let me trial it. But it *is* an addiction-treatment drug,

and it *is* designed to act on endorphin receptors. The law means somewhat less

here than the judgements of medical associations.

I've seen this too often. My grandfather died from liver cancer not peacefully,

but in agony, due to underprescription of morphine, and he was a highly-regarded

surgeon, and his son - my uncle, head of otolaryngology at one of the country's

top hospitals - takes every opportunity to ridicule my reliance on

supplementation while all three of his own children are either dying by degrees

or trying to take their own lives due to undiagnosed neurological

conditions...that ought to give an idea just how deep this problem runs.

I may have said this before, but I would almost take bets at any odds that when

LDN's public profile hits a certain critical mass, we are going to see a very

nasty backlash against LDN, perhaps even a sanction on its use for conditions

where one of its primary benefits is " increased sense of wellbeing " .

Not to take anything away from your experience, but when I encountered this

group, I flat-out *marveled* at how lucky so many of you seemed to have been to

have had such an easy time with this. I would even suggest the stories from

those who've had difficulty obtaining the prescription are just a small number

of those we could hear...those who aren't allowed access to treatments with

stigma like LDN don't tend to believe their energies are well-spent telling

others of their non-success stories. This is endemic to the system and from

what I've seen can only be addressed by subversive action until and unless

enough people with enough public credibility advocate for a treatment that it

begins to lose its stigma.

I have a very bad attitude about this from such frequent personal experience of

this, and from having seen too many people suffer too much needless agony from

treatments denied for no other reason than fear of the moral outrage of medical

governing bodies.

From what I've seen, LDN could be a truly marvellous way to improve the

function of managed heroin addicts...either LDN or ULDN promises the opportunity

to dramatically reduce dose requirements and improve the health of managed

addicts. It could also be a cheap, safe godsend for perhaps hundreds of

thousands or even millions of alcoholics who are resistant to cognitive or

" spiritually-oriented " recovery programs. If it shows any real promise in

either area, watch for the backlash to hit not long after.

-Cub Lea-

[Guest guest]

Hi Cub Lea,

Yes, my neuro, through sheer dumb luck on my part, is one of the most respected MS researchers in the world. I am going to do my very best to get him to announce to the world - somehow - that he is in fact prescribing LDN, and that it is safe to do so. Maybe this will result in a lessening of the risk associated with prescribing LDN by other doctors. Wish me luck.

Also at http://goodshape.net/LDNHighlights.html there is a good deal of info about Dr. Bihari. He is no quack! And at www.remedyfind LDN is the No.1 suggested treatment for MS. There is also a web petition being put together to help convince the skeptical that LDN is worthy of a trial.

Maybe I am over optimistic, but at least now the mice that roar can get together to form a chorus. Maybe, just maybe, this instance of the roar of the crowd will attract some genuine attention from more of those "people that count", whomever and wherever they may be.

Tom from Edmonton

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

From: Cub Lea

low dose naltrexone

Sent: Sunday, May 02, 2004 5:01 PM

Subject: [low dose naltrexone] Re: For Onyxpect RE:Off-label Scripts

At 01:33 PM 5/2/04, you wrote:>As far as I know in Canada, off label use is quite legal, and done for a lot of drugs where there may be some cross-over benefits between drugs that are somewhat similar.> >Tom from CanadaLegal but risky. Doctors have their governing bodies to answer to, and it was made painfully clear by one of the best people in the province here that any doctor prescribing a substance typically used only in clinical opiate detox would not be viewed favorably by his/her peers. An honest explanation of the reasons for prescribing it, particularly in my case, could I imagine place that doctor at considerable peril. You may have latched onto someone whose reputation can take some bashing without damage. But surely you also remember the fallout from Dilantin, and the still-reverberating sanction against Canada's top pain management specialist.Naltrexone has a moral stigma just as surely as morphine does. If this was a substance that was normally used for asthma treatment, and affected any other neurotransmitter in the same way, I'm sure I'd be having very few problems finding someone to let me trial it. But it *is* an addiction-treatment drug, and it *is* designed to act on endorphin receptors. The law means somewhat less here than the judgements of medical associations.I've seen this too often. My grandfather died from liver cancer not peacefully, but in agony, due to underprescription of morphine, and he was a highly-regarded surgeon, and his son - my uncle, head of otolaryngology at one of the country's top hospitals - takes every opportunity to ridicule my reliance on supplementation while all three of his own children are either dying by degrees or trying to take their own lives due to undiagnosed neurological conditions...that ought to give an idea just how deep this problem runs.I may have said this before, but I would almost take bets at any odds that when LDN's public profile hits a certain critical mass, we are going to see a very nasty backlash against LDN, perhaps even a sanction on its use for conditions where one of its primary benefits is "increased sense of wellbeing".Not to take anything away from your experience, but when I encountered this group, I flat-out *marveled* at how lucky so many of you seemed to have been to have had such an easy time with this. I would even suggest the stories from those who've had difficulty obtaining the prescription are just a small number of those we could hear...those who aren't allowed access to treatments with stigma like LDN don't tend to believe their energies are well-spent telling others of their non-success stories. This is endemic to the system and from what I've seen can only be addressed by subversive action until and unless enough people with enough public credibility advocate for a treatment that it begins to lose its stigma.I have a very bad attitude about this from such frequent personal experience of this, and from having seen too many people suffer too much needless agony from treatments denied for no other reason than fear of the moral outrage of medical governing bodies.From what I've seen, LDN could be a truly marvellous way to improve the function of managed heroin addicts...either LDN or ULDN promises the opportunity to dramatically reduce dose requirements and improve the health of managed addicts. It could also be a cheap, safe godsend for perhaps hundreds of thousands or even millions of alcoholics who are resistant to cognitive or "spiritually-oriented" recovery programs. If it shows any real promise in either area, watch for the backlash to hit not long after.-Cub Lea-

[Guest guest]

Tom I used to see your nuero also but a new man moved into RedDeer which is closer and easyer to manuver in, and he has started an ms clinic so I went to him. Unluckily for me he is against L.D.N. use unlike Dr. Warren. So I had to get my G.P to prescribe it for me. I hope we can meet in the chat room but like cub says it sure is a lonely place when I am there.

Reg.

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

From: low dose naltrexone

Date: 05/04/04 17:52:03

low dose naltrexone

Subject: Re: [low dose naltrexone] Re: For Onyxpect RE:Off-label Scripts

Hi Cub Lea,

Yes, my neuro, through sheer dumb luck on my part, is one of the most respected MS researchers in the world. I am going to do my very best to get him to announce to the world - somehow - that he is in fact prescribing LDN, and that it is safe to do so. Maybe this will result in a lessening of the risk associated with prescribing LDN by other doctors. Wish me luck.

Also at http://goodshape.net/LDNHighlights.html there is a good deal of info about Dr. Bihari. He is no quack! And at www.remedyfind LDN is the No.1 suggested treatment for MS. There is also a web petition being put together to help convince the skeptical that LDN is worthy of a trial.

Maybe I am over optimistic, but at least now the mice that roar can get together to form a chorus. Maybe, just maybe, this instance of the roar of the crowd will attract some genuine attention from more of those "people that count", whomever and wherever they may be.

Tom from Edmonton

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

From: Cub Lea

low dose naltrexone

Sent: Sunday, May 02, 2004 5:01 PM

Subject: [low dose naltrexone] Re: For Onyxpect RE:Off-label Scripts

At 01:33 PM 5/2/04, you wrote:>As far as I know in Canada, off label use is quite legal, and done for a lot of drugs where there may be some cross-over benefits between drugs that are somewhat similar.> >Tom from CanadaLegal but risky. Doctors have their governing bodies to answer to, and it was made painfully clear by one of the best people in the province here that any doctor prescribing a substance typically used only in clinical opiate detox would not be viewed favorably by his/her peers. An honest explanation of the reasons for prescribing it, particularly in my case, could I imagine place that doctor at considerable peril. You may have latched onto someone whose reputation can take some bashing without damage. But surely you also remember the fallout from Dilantin, and the still-reverberating sanction against Canada's top pain management specialist.Naltrexone has a moral stigma just as surely as morphine does. If this was a substance that was normally used for asthma treatment, and affected any other neurotransmitter in the same way, I'm sure I'd be having very few problems finding someone to let me trial it. But it *is* an addiction-treatment drug, and it *is* designed to act on endorphin receptors. The law means somewhat less here than the judgements of medical associations.I've seen this too often. My grandfather died from liver cancer not peacefully, but in agony, due to underprescription of morphine, and he was a highly-regarded surgeon, and his son - my uncle, head of otolaryngology at one of the country's top hospitals - takes every opportunity to ridicule my reliance on supplementation while all three of his own children are either dying by degrees or trying to take their own lives due to undiagnosed neurological conditions...that ought to give an idea just how deep this problem runs.I may have said this before, but I would almost take bets at any odds that when LDN's public profile hits a certain critical mass, we are going to see a very nasty backlash against LDN, perhaps even a sanction on its use for conditions where one of its primary benefits is "increased sense of wellbeing".Not to take anything away from your experience, but when I encountered this group, I flat-out *marveled* at how lucky so many of you seemed to have been to have had such an easy time with this. I would even suggest the stories from those who've had difficulty obtaining the prescription are just a small number of those we could hear...those who aren't allowed access to treatments with stigma like LDN don't tend to believe their energies are well-spent telling others of their non-success stories. This is endemic to the system and from what I've seen can only be addressed by subversive action until and unless enough people with enough public credibility advocate for a treatment that it begins to lose its stigma.I have a very bad attitude about this from such frequent personal experience of this, and from having seen too many people suffer too much needless agony from treatments denied for no other reason than fear of the moral outrage of medical governing bodies.From what I've seen, LDN could be a truly marvellous way to improve the function of managed heroin addicts...either LDN or ULDN promises the opportunity to dramatically reduce dose requirements and improve the health of managed addicts. It could also be a cheap, safe godsend for perhaps hundreds of thousands or even millions of alcoholics who are resistant to cognitive or "spiritually-oriented" recovery programs. If it shows any real promise in either area, watch for the backlash to hit not long after.-Cub Lea-

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[Guest guest]

Yeah, Reg, there has never been anyone there when I logged in. Maybe later we could arrange times, but right now I am sick off and on and never know what the next hour will bring. But I see Dr. Warren next week, and I am really looking forward to that. I am sure we will all talk later.

There is another chat group under mswatch, but that site is sponsored by Avonex, I think, and I certainly get the cold shoulder there when I try to talk there about LDN. The position of their "experts" of course is that "LDN is not clinically approved for MS", which is true of course, but they sure don't even seem to entertain any thoughts about LDN. I talked to some people who just seemed to be there by chance, and steered them to the LDN homepage, so maybe I at least made a dent. TC Reg