Re: Talk with GI About LDN for Crohn's

[Guest guest]

Your son's doctor (and others who feel the same way) infuriates me! 

They should be ashamed of themselves!!

[low dose naltrexone] Talk with GI About LDN for Crohn's

Just came from a discusion with my son's GI about looking into whether

LDN might be an option in the future once the Phase II trials were

finished and if they showed just as promising results. I got the

expected response which was, even though the study was published in a

reputable journal and even if the Phase II trials are highly successful

and again published in the same reputable journal, the results would

still not qualify as high quality data. He would only consider using

this once 10 years or so has passed and the long-term effects are known

and then, only if it is a recommended treatment protocol by his peers.

I think you get the picture. He said as well that there is no way he

would take on the liability of prescibing treatment that deviates from

the standard Crohn's playbook and that no other GI in Canada (yes, I'm

in Canada) would dare to either. It didn't matter to him that LDN has

been FDA approved for some time already and that new treatments for

Crohn's that have just come out have some pretty nasty side effects

themselves. He even mentioned at one point that if some pharmacuetical

company were to test extensively that this would be encouraging - that

torpedo's LDN, as it has done to date.

I'm sure this is not unique to others who have had similar

conversations. Just felt like letting others in on my conversation and

also I am curious to hear if there are others in Canada who have GI's

with a different opinion (I would like to hear from you if you do).

Plan your next roadtrip with MapQuest.com: America's #1 Mapping Site.

[Guest guest]

I agree especially given the “fact” that LDN does not harm the body. Yet they will freely give us meds that even with insurance cost a bundle and destroy our bodies in other ways. The large drug companies are behind this from my perspective and many docs are in their pocket unfortunately.

I hope you will opt to continue looking for someone who WILL write the script for LDN so your son can at least try it. I KNOW how disheartening it is but there is help somewhere if you can remain resolute in your determination to find it. Have you asked this group if there are any docs in your area that will write LDN scripts?

WE care-

On 5/8/08 8:05 AM, " mdsport85@... " <mdsport85@...> wrote:

Your son's doctor (and others who feel the same way) infuriates me! 

They should be ashamed of themselves!!

[low dose naltrexone] Talk with GI About LDN for Crohn's

Just came from a discusion with my son's GI about looking into whether

LDN might be an option in the future once the Phase II trials were

finished and if they showed just as promising results. I got the

expected response which was, even though the study was published in a

reputable journal and even if the Phase II trials are highly successful

and again published in the same reputable journal, the results would

still not qualify as high quality data. He would only consider using

this once 10 years or so has passed and the long-term effects are known

and then, only if it is a recommended treatment protocol by his peers.

I think you get the picture. He said as well that there is no way he

would take on the liability of prescibing treatment that deviates from

the standard Crohn's playbook and that no other GI in Canada (yes, I'm

in Canada) would dare to either. It didn't matter to him that LDN has

been FDA approved for some time already and that new treatments for

Crohn's that have just come out have some pretty nasty side effects

themselves. He even mentioned at one point that if some pharmacuetical

company were to test extensively that this would be encouraging - that

torpedo's LDN, as it has done to date.

I'm sure this is not unique to others who have had similar

conversations. Just felt like letting others in on my conversation and

also I am curious to hear if there are others in Canada who have GI's

with a different opinion (I would like to hear from you if you do).

Plan your next roadtrip with MapQuest.com <http://www.mapquest.com/?ncid=mpqmap00030000000004> : America's #1 Mapping Site.

[Guest guest]

I guess the first time asking about other Gi's in Canada that may

prescribe LDN is in my original post. So if there is anyone out there

in Canada (I am in Ontario) who has had success with their GI, I

would really like to know. Thanks for the input Micheal.

>

> >

> >

> >

> > Your son's doctor (and others who feel the same way) infuriates

me! 

> > They should be ashamed of themselves!!

> >

> > [low dose naltrexone] Talk with GI About LDN for Crohn's

> >

> >

> >

> > Just came from a discusion with my son's GI about looking into

whether

> > LDN might be an option in the future once the Phase II trials were

> > finished and if they showed just as promising results. I got the

> > expected response which was, even though the study was published

in a

> > reputable journal and even if the Phase II trials are highly

successful

> > and again published in the same reputable journal, the results

would

> > still not qualify as high quality data. He would only consider

using

> > this once 10 years or so has passed and the long-term effects are

known

> > and then, only if it is a recommended treatment protocol by his

peers.

> >

> > I think you get the picture. He said as well that there is no way

he

> > would take on the liability of prescibing treatment that deviates

from

> > the standard Crohn's playbook and that no other GI in Canada

(yes, I'm

> > in Canada) would dare to either. It didn't matter to him that LDN

has

> > been FDA approved for some time already and that new treatments

for

> > Crohn's that have just come out have some pretty nasty side

effects

> > themselves. He even mentioned at one point that if some

pharmacuetical

> > company were to test extensively that this would be encouraging -

that

> > torpedo's LDN, as it has done to date.

> >

> > I'm sure this is not unique to others who have had similar

> > conversations. Just felt like letting others in on my

conversation and

> > also I am curious to hear if there are others in Canada who have

GI's

> > with a different opinion (I would like to hear from you if you

do).

> >

> >

> >

> >

> >

> > Plan your next roadtrip with MapQuest.com

> > <http://www.mapquest.com/?ncid=mpqmap00030000000004> : America's

#1 Mapping

> > Site.

> >

> >

>

[Guest guest]

My primary care physician here in Toronto will not prescribe LDN for me for arthritis even though he knows that Naltrexone is FDA approved for drug use. Effiya"m.jim86" <m.jim86@...> wrote: Just came from a discusion with my son's GI about looking into whether LDN might be an option in the future once the Phase II trials were finished and if they showed just as promising results. I got the expected response which was, even though the study was published in a reputable journal and even if the Phase II trials are

highly successful and again published in the same reputable journal, the results would still not qualify as high quality data. He would only consider using this once 10 years or so has passed and the long-term effects are known and then, only if it is a recommended treatment protocol by his peers. I think you get the picture. He said as well that there is no way he would take on the liability of prescibing treatment that deviates from the standard Crohn's playbook and that no other GI in Canada (yes, I'm in Canada) would dare to either. It didn't matter to him that LDN has been FDA approved for some time already and that new treatments for Crohn's that have just come out have some pretty nasty side effects themselves. He even mentioned at one point that if some pharmacuetical company were to test extensively that this would be encouraging - that torpedo's LDN, as it has done to date.I'm sure this is not unique

to others who have had similar conversations. Just felt like letting others in on my conversation and also I am curious to hear if there are others in Canada who have GI's with a different opinion (I would like to hear from you if you do).

Be a better friend, newshound, and know-it-all with Mobile. Try it now.

[Guest guest]

There is a doctor in Burlington, Ontario who will do it though. I have not been to him since I am physically disabled and can't move around that easily. I get my LDN from River Pharmacy in Winnipeg."m.jim86" <m.jim86@...> wrote: I guess the first time asking about other Gi's in Canada that may prescribe LDN is in my original post. So if there is anyone out there in Canada (I am in Ontario) who has had success with their GI, I would really like to know. Thanks for the input Micheal.> > > > > > > > > Your son's doctor (and others who feel the same way) infuriates me! > > They should be ashamed of themselves!!> > > > [low dose naltrexone] Talk with GI About LDN for Crohn's> > > > > > > > Just came from a discusion with my son's GI about looking into whether> > LDN might be an option in the future once the Phase II trials were> > finished and if they showed just as promising results. I got the> > expected response which was, even though the study was published in a> >

reputable journal and even if the Phase II trials are highly successful> > and again published in the same reputable journal, the results would> > still not qualify as high quality data. He would only consider using> > this once 10 years or so has passed and the long-term effects are known> > and then, only if it is a recommended treatment protocol by his peers.> > > > I think you get the picture. He said as well that there is no way he> > would take on the liability of prescibing treatment that deviates from> > the standard Crohn's playbook and that no other GI in Canada (yes, I'm> > in Canada) would dare to either. It didn't matter to him that LDN has> > been FDA approved for some time already and that new treatments for> > Crohn's that have just come out have some pretty nasty side effects> > themselves. He

even mentioned at one point that if some pharmacuetical> > company were to test extensively that this would be encouraging - that> > torpedo's LDN, as it has done to date.> > > > I'm sure this is not unique to others who have had similar> > conversations. Just felt like letting others in on my conversation and> > also I am curious to hear if there are others in Canada who have GI's> > with a different opinion (I would like to hear from you if you do).> > > > > > > > > > > > Plan your next roadtrip with MapQuest.com> > <http://www.mapquest.com/?ncid=mpqmap00030000000004> : America's #1 Mapping> > Site. > > > >>

Be a better friend, newshound, and know-it-all with Mobile. Try it now.

[Guest guest]

It seems to me that doctors are real apprehensive to stray from

anything other than what is published by the foundation their

practice is associated with (e.g. Crohn's foundation, Arthiritis

Foundation, etc.) It must be a liability issue I guess or simply be

the fact that a number of Doctors feel they are the treatment

decision makers for their patients and don't really want to deal with

informed patiente/parents. I got this disticnt feeling from my

encounter. Very narrow thinking and I politely let it be known to my

son's GI of my disappointment. Probably didn't do me any good but

that's just the way it is and we as parents/patients are ultimately

responsible.

Just came from a discusion

with my son's GI about looking into whether

> LDN might be an option in the future once the Phase II trials were

> finished and if they showed just as promising results. I got the

> expected response which was, even though the study was published in

a

> reputable journal and even if the Phase II trials are highly

successful

> and again published in the same reputable journal, the results

would

> still not qualify as high quality data. He would only consider

using

> this once 10 years or so has passed and the long-term effects are

known

> and then, only if it is a recommended treatment protocol by his

peers.

>

> I think you get the picture. He said as well that there is no way

he

> would take on the liability of prescibing treatment that deviates

from

> the standard Crohn's playbook and that no other GI in Canada (yes,

I'm

> in Canada) would dare to either. It didn't matter to him that LDN

has

> been FDA approved for some time already and that new treatments for

> Crohn's that have just come out have some pretty nasty side effects

> themselves. He even mentioned at one point that if some

pharmacuetical

> company were to test extensively that this would be encouraging -

that

> torpedo's LDN, as it has done to date.

>

> I'm sure this is not unique to others who have had similar

> conversations. Just felt like letting others in on my conversation

and

> also I am curious to hear if there are others in Canada who have

GI's

> with a different opinion (I would like to hear from you if you do).

>

>

>

>

>

>

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

> Be a better friend, newshound, and know-it-all with Mobile.

Try it now.

>

[Guest guest]

Are you getting it without a prescription?

> >

> > >

> > >

> > >

> > > Your son's doctor (and others who feel the same way) infuriates

> me!

> > > They should be ashamed of themselves!!

> > >

> > > [low dose naltrexone] Talk with GI About LDN for Crohn's

> > >

> > >

> > >

> > > Just came from a discusion with my son's GI about looking into

> whether

> > > LDN might be an option in the future once the Phase II trials

were

> > > finished and if they showed just as promising results. I got the

> > > expected response which was, even though the study was

published

> in a

> > > reputable journal and even if the Phase II trials are highly

> successful

> > > and again published in the same reputable journal, the results

> would

> > > still not qualify as high quality data. He would only consider

> using

> > > this once 10 years or so has passed and the long-term effects

are

> known

> > > and then, only if it is a recommended treatment protocol by his

> peers.

> > >

> > > I think you get the picture. He said as well that there is no

way

> he

> > > would take on the liability of prescibing treatment that

deviates

> from

> > > the standard Crohn's playbook and that no other GI in Canada

> (yes, I'm

> > > in Canada) would dare to either. It didn't matter to him that

LDN

> has

> > > been FDA approved for some time already and that new treatments

> for

> > > Crohn's that have just come out have some pretty nasty side

> effects

> > > themselves. He even mentioned at one point that if some

> pharmacuetical

> > > company were to test extensively that this would be

encouraging -

> that

> > > torpedo's LDN, as it has done to date.

> > >

> > > I'm sure this is not unique to others who have had similar

> > > conversations. Just felt like letting others in on my

> conversation and

> > > also I am curious to hear if there are others in Canada who

have

> GI's

> > > with a different opinion (I would like to hear from you if you

> do).

> > >

> > >

> > >

> > >

> > >

> > > Plan your next roadtrip with MapQuest.com

> > > <http://www.mapquest.com/?ncid=mpqmap00030000000004> :

America's

> #1 Mapping

> > > Site.

> > >

> > >

> >

>

>

>

>

>

>

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

> Be a better friend, newshound, and know-it-all with Mobile.

Try it now.

>

[Guest guest]

Yes. You don't need a prescription with River PHARMACY."m.jim86" <m.jim86@...> wrote: Are you getting it without a prescription?> > > > > > > > > > > > > > Your son's doctor (and others who feel the same way) infuriates > me! > > > They should be ashamed of themselves!!> > > > > > [low dose naltrexone] Talk with GI About LDN for Crohn's> > > > > > > > > > > > Just came from a discusion with my son's GI about looking into > whether> > > LDN might be an option in the future once the Phase II trials were> > > finished and if they showed just as promising results. I got the> > > expected response which was, even though the study was published > in a> > > reputable journal and even if the Phase II trials are highly > successful> > > and again published in the same reputable journal, the results > would> > > still not qualify as high quality data. He would only consider > using> > > this once 10 years or

so has passed and the long-term effects are > known> > > and then, only if it is a recommended treatment protocol by his > peers.> > > > > > I think you get the picture. He said as well that there is no way > he> > > would take on the liability of prescibing treatment that deviates > from> > > the standard Crohn's playbook and that no other GI in Canada > (yes, I'm> > > in Canada) would dare to either. It didn't matter to him that LDN > has> > > been FDA approved for some time already and that new treatments > for> > > Crohn's that have just come out have some pretty nasty side > effects> > > themselves. He even mentioned at one point that if some > pharmacuetical> > > company were to test extensively that this would be encouraging - > that> >

> torpedo's LDN, as it has done to date.> > > > > > I'm sure this is not unique to others who have had similar> > > conversations. Just felt like letting others in on my > conversation and> > > also I am curious to hear if there are others in Canada who have > GI's> > > with a different opinion (I would like to hear from you if you > do).> > > > > > > > > > > > > > > > > > Plan your next roadtrip with MapQuest.com> > > <http://www.mapquest.com/?ncid=mpqmap00030000000004> : America's > #1 Mapping> > > Site. > > > > > >> >> > > > > > > ---------------------------------> Be a better

friend, newshound, and know-it-all with Mobile. Try it now.>

Be a better friend, newshound, and know-it-all with Mobile. Try it now.

[Guest guest]

I talked with my GI yesterday as well. He said if it were him who had

CD he would seek LDN tx as it sounds very promising but he is NOT

willing to write me a script or manage me on the medication because ist

off label.

He was very willing to refer me to anyone he knew that wrote for LDN,

and asked me to keep him posted....off the records I guess??

Ive got the meds (LDN) and Im just waiting my prednisone taper. Im at

25mg today and will wean by 5mg every 3days until I hit 10mg. I will

make the switch then!

[Guest guest]

Best of luck to you Redspot!

Please keep in touch!

I am interested to hear how you do on LDN!

I am sure you will find it very beneficial to you, as I have!

Kindest regards,

Patti (a/k/a livinwithcrohns)

*dx Crohn's - June 1978

*surgery - Dec. 2002 - Ileocolectomy/resection

*dx Crohn's/Colitis/Acid Reflux - Feb. 2005 (2006)

*LDN user – March 2008

[Guest guest]

I don't get it...Dr's write prescriptions Every Day for Off Label Drugs for other things that are more harmful but they won't for LDN that has no bad side effects like all this other stuff they give us.

Hugs & Blessings,

Crystal

LDN_Users Group Owner

Diagnosed November 2004 with Secondary Progressive MS, Transverse Myelitis and an Advocate for LDN!! 2 years & 8 months on LDN with Skip's Pharmacy.....

Crystal's MS,TM & LDN Website

Crystal's LDN Gift Shop

Crystal's LDN Support Group

Skip's Compounding Pharmacy

LDN Website

[low dose naltrexone] Re: Talk with GI About LDN for Crohn's

I talked with my GI yesterday as well. He said if it were him who had CD he would seek LDN tx as it sounds very promising but he is NOT willing to write me a script or manage me on the medication because ist off label.He was very willing to refer me to anyone he knew that wrote for LDN, and asked me to keep him posted....off the records I guess??Ive got the meds (LDN) and Im just waiting my prednisone taper. Im at 25mg today and will wean by 5mg every 3days until I hit 10mg. I will make the switch then!

Be a better friend, newshound, and know-it-all with Mobile. Try it now.

[Guest guest]

redspot,

congrats!, :-) write me and tell me how you are, you know the discussions we've had about SCD and Makers at the other forum, it's something to consider. Do you know that you can use DLPA to strengthen the effects from LDN? You can order it at: www.iherb.com as far as I know. Ask others in here about DLPA, so they could help me to explain it for you. :-)

And, ....yes, did you ask your GI if he was willing to prescibe Humira for you? I am sure he would, but maybe he then has forgotten that Humira is an off label prescr. for Crohns? (At least it has been an off label prescr. - it was FDA approved for RA, not for Crohns), but I think most of the doc's have had no problems in prescr. it for Crohns....

LDN + glutamat + DLPA + Makers or SCD diet, or at least: no sugar and milk products, later cut out gluten -------->/wheat flour, other flours/ and soy. Ingrid

[low dose naltrexone] Re: Talk with GI About LDN for Crohn'sI talked with my GI yesterday as well. He said if it were him who had CD he would seek LDN tx as it sounds very promising but he is NOT willing to write me a script or manage me on the medication because ist off label.He was very willing to refer me to anyone he knew that wrote for LDN, and asked me to keep him posted....off the records I guess??Ive got the meds (LDN) and Im just waiting my prednisone taper. Im at 25mg today and will wean by 5mg every 3days until I hit 10mg. I will make the switch then!------------------------------------

Links<*> To visit your group on the web, go to: low dose naltrexone/<*> Your email settings: Individual Email | Traditional<*> To change settings online go to: low dose naltrexone/join ( ID required)<*> To change settings via email: mailto:low dose naltrexone-digest mailto:low dose naltrexone-fullfeatured <*>

[Guest guest]

Ingrid, Thank you for all of your help. I hope LDN works for me. I will keep you posted. I WalterGunn Dybfest <gunn.ingrid@...> wrote: redspot, congrats!, :-) write me and tell me how you are, you know the discussions we've had about SCD and Makers at the other forum, it's something to consider. Do you know that you can use DLPA to strengthen the effects from LDN? You can order it

at: www.iherb.com as far as I know. Ask others in here about DLPA, so they could help me to explain it for you. :-) And, ....yes, did you ask your GI if he was willing to prescibe Humira for you? I am sure he would, but maybe he then has forgotten that Humira is an off label prescr. for Crohns? (At least it has been an off label prescr. - it was FDA approved for RA, not for Crohns), but I think most of the doc's have had no problems in prescr. it for Crohns.... LDN + glutamat + DLPA + Makers or SCD diet, or at least: no sugar and milk products, later cut out gluten -------->/wheat flour, other flours/ and soy. Ingrid [low dose naltrexone] Re: Talk with GI About LDN for Crohn'sI talked with my GI yesterday as well. He said if it were him who had CD he would seek LDN tx as it sounds very promising but he is NOT willing to write me a script or manage me on the medication because ist off label.He was very willing to refer me to anyone he knew that wrote for LDN, and asked me to keep him posted....off the records I guess??Ive got the meds (LDN) and Im just waiting my prednisone taper. Im at 25mg today and will wean by 5mg every 3days until I hit 10mg. I will make the switch then!------------------------------------

[Guest guest]

Ingrid, Thank you for all of your help. I hope LDN works for me. I will keep you posted. WalterGunn Dybfest <gunn.ingrid@...> wrote: redspot, congrats!, :-) write me and tell me how you are, you know the discussions we've had about SCD and Makers at the other forum, it's something to consider. Do you know that you can use DLPA to strengthen the effects from LDN? You can order it

at: www.iherb.com as far as I know. Ask others in here about DLPA, so they could help me to explain it for you. :-) And, ....yes, did you ask your GI if he was willing to prescibe Humira for you? I am sure he would, but maybe he then has forgotten that Humira is an off label prescr. for Crohns? (At least it has been an off label prescr. - it was FDA approved for RA, not for Crohns), but I think most of the doc's have had no problems in prescr. it for Crohns.... LDN + glutamat + DLPA + Makers or SCD diet, or at least: no sugar and milk products, later cut out gluten -------->/wheat flour, other flours/ and soy. Ingrid [low dose naltrexone] Re: Talk with GI About LDN for Crohn'sI talked with my GI yesterday as well. He said if it were him who had CD he would seek LDN tx as it sounds very promising but he is NOT willing to write me a script or manage me on the medication because ist off label.He was very willing to refer me to anyone he knew that wrote for LDN, and asked me to keep him posted....off the records I guess??Ive got the meds (LDN) and Im just waiting my prednisone taper. Im at 25mg today and will wean by 5mg every 3days until I hit 10mg. I will make the switch then!------------------------------------

[Guest guest]

I hear your frustration with your GI specialist(?) using that term

loosely - we had same thing happen with us - our GI wouldn't consider

it until we exhuasted the standard treatments or even look at the

trial data that was published by a respected journal - luckily my wife

convinced our primary care physican that it was worth a try for the

crohns. We have seen some good improvment but lots of it depends on me

wathcin my diet and avoiding certain foods. Some days are better than

others

Good luck and search for a primary that might consider the off label

use.

[Guest guest]

Crystal,

I had a conversation with one of our newby's here on the site () and she told me something that makes good sense.

Of the 27% of the "off label" prescriptions being written, it might be that most of those are still under patents and the drug companies are pushing the use of them (in one way or another) for other ailments in order to make even more money. If the patented ran out they are not being pushed by the drug companies anylonger. Therefore doctors are not hearing about it and don't want to stick their necks out.

Even in my profession as an appraiser, we mimic what others are doing in our field so that we can say that "it is standard practice" and "I am just doing what the other appraisers are doing". Who can argue with that in court?

Our way out is to get testing done and keep getting the word out.

LDN is very unique in that it is definitely a People Powered drug. Without the people talking to each other things would not be getting any where near where they have at this point. Thank god for all of you.

Aletha

[low dose naltrexone] Re: Talk with GI About LDN for Crohn's

I talked with my GI yesterday as well. He said if it were him who had CD he would seek LDN tx as it sounds very promising but he is NOT willing to write me a script or manage me on the medication because ist off label.He was very willing to refer me to anyone he knew that wrote for LDN, and asked me to keep him posted....off the records I guess??Ive got the meds (LDN) and Im just waiting my prednisone taper. Im at 25mg today and will wean by 5mg every 3days until I hit 10mg. I will make the switch then!

Be a better friend, newshound, and know-it-all with Mobile. Try it now.

[Guest guest]

MULEYKING - i had the same experience! gastro didn't want to even look at the print-out, until we have exhausted all approved meds for crohn's. then, my pcp didn't want to go against the gastro's advice. i think it's a shame!! so many approved meds have done much harm!!

marshiris@...

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[Guest guest]

Good luck. For many, this looks to be the only way (taking charge

yourself). It of course has potential drawbacks, one of them being you

could never tell you GI, so I'm not so sure of this approach (even

though I have thought about it hard).

I figure the way to go might be to watch the trials continue and

hopefully have more of them, then keep feeding this info to my GI and

pestering him over time with data. That data will also include exactly

how extensive the testing has been for others CD drugs that have been

approved, with all their side effects, and compare to the amount of

similar data for LDN and CD. Hoping this over time will show that LDN

is a far better performer with just as much, if not more, testing than

drugs already out there.

[Guest guest]

I am really serious when I say .... What the hell are these so called doctors good for????

Aren't they supposed to FIRST ...  Do No Harm?

I have no respect for the ones that KNOW the harmful effects of the drugs they prescribe for their patients and say no trying LDN.

Give me a break. we should take them out back and __________ - fill in the blanks!! 

My daughter (Crohns) is doing wonderful, thanks to Dr. Bihari and LDN. 

G-D Bless You Dr. Bihari

Re: [low dose naltrexone] Re: Talk with GI About LDN for Crohn's

i concur with m.jim86  -  either wait until LDN is approved, or take it without approval of FDA and our doctors.  with, of course, showing the doctors what's going on with all those who are using it, with the lack of side effects that all the other drugs are dishing out!

 

marshirisaol

 

 

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