... Low Dose Naltrexone ...

[Guest guest]

I just came from my neurologist. He says I am doing very well and have even

improved a little. I asked him about ... Low Dose Naltrexone ... and he said

he had never heard of it. He asked me to give him all the information and he

would look into it. Can some of you who are taking this please email me with

more information on the drug, the dosage, where you get it, who prescribed it

and how you think it has helped you. I will pass it on to my doctor. Do

Dr. Fink and Dr. Siddique and other PLS experts approve this treatment?

Funny that my neuro is not aware of it. Maybe they should write a paper or

something so that other doctors will have this information.

Thanks...

Bonnie G - Phoenix az

[Guest guest]

hi group an Bonnie

I saw Dr. Siddique last month and he told me that the only that works for

people who have PLS is Bacfolen. I keep my mind open, though and I will another

neurologist to find about Naltrexone.

Bonnie Guzelf bguzelf@...> wrote:

I just came from my neurologist. He says I am doing very well and have even

improved a little. I asked him about ... Low Dose Naltrexone ... and he said

he had never heard of it. He asked me to give him all the information and he

would look into it. Can some of you who are taking this please email me with

more information on the drug, the dosage, where you get it, who prescribed it

and how you think it has helped you. I will pass it on to my doctor. Do

Dr. Fink and Dr. Siddique and other PLS experts approve this treatment?

Funny that my neuro is not aware of it. Maybe they should write a paper or

something so that other doctors will have this information.

Thanks...

Bonnie G - Phoenix az

[Guest guest]

With all due respect to Dr. Siddique, he is wrong. There are several of us

in this group enjoying the benefits of LDN and it was commended to me by my

neurologist. It has worked and is working for me and others here. Don't

give up, you'll find a neuro more willing to try new approaches.

Gene

>

>Reply-To: PLS-FRIENDS

>To: PLS-FRIENDS

>Subject: Re: ... Low Dose Naltrexone ...

>Date: Thu, 25 May 2006 17:57:52 -0700 (PDT)

>MIME-Version: 1.0

>X-Originating-IP: 68.142.207.189

>X-Sender: bob102643@...

>Received: from n21a.bullet.scd.yahoo.com ([66.94.237.50]) by

>bay0-mc2-f10.bay0.hotmail.com with Microsoft SMTPSVC(6.0.3790.1830); Thu,

>25 May 2006 17:58:59 -0700

>Received: from [66.218.69.4] by n21.bullet.scd.yahoo.com with NNFMP; 26 May

>2006 00:58:59 -0000

>Received: from [66.218.66.97] by t4.bullet.scd.yahoo.com with NNFMP; 26 May

>2006 00:58:59 -0000

>Received: (qmail 4246 invoked from network); 26 May 2006 00:58:07 -0000

>Received: from unknown (66.218.67.36) by m14.grp.scd.yahoo.com with QMQP;

>26 May 2006 00:58:06 -0000

>Received: from unknown (HELO web81910.mail.mud.yahoo.com) (68.142.207.189)

>by mta10.grp.scd.yahoo.com with SMTP; 26 May 2006 00:58:00 -0000

>Received: (qmail 30112 invoked by uid 60001); 26 May 2006 00:57:52 -0000

>Received: from [70.131.64.30] by web81910.mail.mud.yahoo.com via HTTP; Thu,

>25 May 2006 17:57:52 PDT

>X-Message-Info: LsUYwwHHNt1u3V0dd0ncK/JdiIEpKWAkfcm6+Ar2Hes=

>Comment: DomainKeys? See http://antispam.yahoo.com/domainkeys

>DomainKey-Signature: a=rsa-sha1; q=dns; c=nofws; s=lima;

>d=yahoogroups.com;b=iOB5J7GxXkZSFE2FD5GgFHv6V2iRaOzdLg0TxAeM0hBvfWkpyZneWyM1Azd\

kn7ps0xwp8dzMseRBRMO+9XEtI2rZiYdngddQ7geFCayFR5WqCYrr7iiAkGDZROpn4Du6;

>X-Yahoo-Newman-Property: groups-email

>X-Yahoo-Newman-Id: 92704-m53731

>X-Apparently-To: PLS-FRIENDS

>X-eGroups-Msg-Info: 1:12:0:0

>X-Yahoo-Profile: slobbybobby19

>Mailing-List: list PLS-FRIENDS ; contact

>PLS-FRIENDS-owner

>Delivered-To: mailing list PLS-FRIENDS

>List-Id:

>Precedence: bulk

>List-Unsubscribe: PLS-FRIENDS-unsubscribe >

>Return-Path:

>sentto-92704-53731-1148605106-marslites=msn.com@...

>X-OriginalArrivalTime: 26 May 2006 00:58:59.0892 (UTC)

>FILETIME=[92BFA740:01C6805F]

>

>hi group an Bonnie

>

> I saw Dr. Siddique last month and he told me that the only that works

>for people who have PLS is Bacfolen. I keep my mind open, though and I will

>another neurologist to find about Naltrexone.

>

>Bonnie Guzelf bguzelf@...> wrote:

> I just came from my neurologist. He says I am doing very well and have

>even improved a little. I asked him about ... Low Dose Naltrexone ... and

>he said he had never heard of it. He asked me to give him all the

>information and he would look into it. Can some of you who are taking

>this please email me with more information on the drug, the dosage, where

>you get it, who prescribed it and how you think it has helped you. I

>will pass it on to my doctor. Do Dr. Fink and Dr. Siddique and other PLS

>experts approve this treatment?

>Funny that my neuro is not aware of it. Maybe they should write a paper

>or something so that other doctors will have this information.

>Thanks...

>Bonnie G - Phoenix az

>

>

[Guest guest]

With all due respect to Dr. Siddique, he is wrong. There are several of us

in this group enjoying the benefits of LDN and it was commended to me by my

neurologist. It has worked and is working for me and others here. Don't

give up, you'll find a neuro more willing to try new approaches.

Gene

>

>Reply-To: PLS-FRIENDS

>To: PLS-FRIENDS

>Subject: Re: ... Low Dose Naltrexone ...

>Date: Thu, 25 May 2006 17:57:52 -0700 (PDT)

>MIME-Version: 1.0

>X-Originating-IP: 68.142.207.189

>X-Sender: bob102643@...

>Received: from n21a.bullet.scd.yahoo.com ([66.94.237.50]) by

>bay0-mc2-f10.bay0.hotmail.com with Microsoft SMTPSVC(6.0.3790.1830); Thu,

>25 May 2006 17:58:59 -0700

>Received: from [66.218.69.4] by n21.bullet.scd.yahoo.com with NNFMP; 26 May

>2006 00:58:59 -0000

>Received: from [66.218.66.97] by t4.bullet.scd.yahoo.com with NNFMP; 26 May

>2006 00:58:59 -0000

>Received: (qmail 4246 invoked from network); 26 May 2006 00:58:07 -0000

>Received: from unknown (66.218.67.36) by m14.grp.scd.yahoo.com with QMQP;

>26 May 2006 00:58:06 -0000

>Received: from unknown (HELO web81910.mail.mud.yahoo.com) (68.142.207.189)

>by mta10.grp.scd.yahoo.com with SMTP; 26 May 2006 00:58:00 -0000

>Received: (qmail 30112 invoked by uid 60001); 26 May 2006 00:57:52 -0000

>Received: from [70.131.64.30] by web81910.mail.mud.yahoo.com via HTTP; Thu,

>25 May 2006 17:57:52 PDT

>X-Message-Info: LsUYwwHHNt1u3V0dd0ncK/JdiIEpKWAkfcm6+Ar2Hes=

>Comment: DomainKeys? See http://antispam.yahoo.com/domainkeys

>DomainKey-Signature: a=rsa-sha1; q=dns; c=nofws; s=lima;

>d=yahoogroups.com;b=iOB5J7GxXkZSFE2FD5GgFHv6V2iRaOzdLg0TxAeM0hBvfWkpyZneWyM1Azd\

kn7ps0xwp8dzMseRBRMO+9XEtI2rZiYdngddQ7geFCayFR5WqCYrr7iiAkGDZROpn4Du6;

>X-Yahoo-Newman-Property: groups-email

>X-Yahoo-Newman-Id: 92704-m53731

>X-Apparently-To: PLS-FRIENDS

>X-eGroups-Msg-Info: 1:12:0:0

>X-Yahoo-Profile: slobbybobby19

>Mailing-List: list PLS-FRIENDS ; contact

>PLS-FRIENDS-owner

>Delivered-To: mailing list PLS-FRIENDS

>List-Id:

>Precedence: bulk

>List-Unsubscribe: PLS-FRIENDS-unsubscribe >

>Return-Path:

>sentto-92704-53731-1148605106-marslites=msn.com@...

>X-OriginalArrivalTime: 26 May 2006 00:58:59.0892 (UTC)

>FILETIME=[92BFA740:01C6805F]

>

>hi group an Bonnie

>

> I saw Dr. Siddique last month and he told me that the only that works

>for people who have PLS is Bacfolen. I keep my mind open, though and I will

>another neurologist to find about Naltrexone.

>

>Bonnie Guzelf bguzelf@...> wrote:

> I just came from my neurologist. He says I am doing very well and have

>even improved a little. I asked him about ... Low Dose Naltrexone ... and

>he said he had never heard of it. He asked me to give him all the

>information and he would look into it. Can some of you who are taking

>this please email me with more information on the drug, the dosage, where

>you get it, who prescribed it and how you think it has helped you. I

>will pass it on to my doctor. Do Dr. Fink and Dr. Siddique and other PLS

>experts approve this treatment?

>Funny that my neuro is not aware of it. Maybe they should write a paper

>or something so that other doctors will have this information.

>Thanks...

>Bonnie G - Phoenix az

>

>

[Guest guest]

With all due respect to Dr. Siddique, he is wrong. There are several of us

in this group enjoying the benefits of LDN and it was commended to me by my

neurologist. It has worked and is working for me and others here. Don't

give up, you'll find a neuro more willing to try new approaches.

Gene

>

>Reply-To: PLS-FRIENDS

>To: PLS-FRIENDS

>Subject: Re: ... Low Dose Naltrexone ...

>Date: Thu, 25 May 2006 17:57:52 -0700 (PDT)

>MIME-Version: 1.0

>X-Originating-IP: 68.142.207.189

>X-Sender: bob102643@...

>Received: from n21a.bullet.scd.yahoo.com ([66.94.237.50]) by

>bay0-mc2-f10.bay0.hotmail.com with Microsoft SMTPSVC(6.0.3790.1830); Thu,

>25 May 2006 17:58:59 -0700

>Received: from [66.218.69.4] by n21.bullet.scd.yahoo.com with NNFMP; 26 May

>2006 00:58:59 -0000

>Received: from [66.218.66.97] by t4.bullet.scd.yahoo.com with NNFMP; 26 May

>2006 00:58:59 -0000

>Received: (qmail 4246 invoked from network); 26 May 2006 00:58:07 -0000

>Received: from unknown (66.218.67.36) by m14.grp.scd.yahoo.com with QMQP;

>26 May 2006 00:58:06 -0000

>Received: from unknown (HELO web81910.mail.mud.yahoo.com) (68.142.207.189)

>by mta10.grp.scd.yahoo.com with SMTP; 26 May 2006 00:58:00 -0000

>Received: (qmail 30112 invoked by uid 60001); 26 May 2006 00:57:52 -0000

>Received: from [70.131.64.30] by web81910.mail.mud.yahoo.com via HTTP; Thu,

>25 May 2006 17:57:52 PDT

>X-Message-Info: LsUYwwHHNt1u3V0dd0ncK/JdiIEpKWAkfcm6+Ar2Hes=

>Comment: DomainKeys? See http://antispam.yahoo.com/domainkeys

>DomainKey-Signature: a=rsa-sha1; q=dns; c=nofws; s=lima;

>d=yahoogroups.com;b=iOB5J7GxXkZSFE2FD5GgFHv6V2iRaOzdLg0TxAeM0hBvfWkpyZneWyM1Azd\

kn7ps0xwp8dzMseRBRMO+9XEtI2rZiYdngddQ7geFCayFR5WqCYrr7iiAkGDZROpn4Du6;

>X-Yahoo-Newman-Property: groups-email

>X-Yahoo-Newman-Id: 92704-m53731

>X-Apparently-To: PLS-FRIENDS

>X-eGroups-Msg-Info: 1:12:0:0

>X-Yahoo-Profile: slobbybobby19

>Mailing-List: list PLS-FRIENDS ; contact

>PLS-FRIENDS-owner

>Delivered-To: mailing list PLS-FRIENDS

>List-Id:

>Precedence: bulk

>List-Unsubscribe: PLS-FRIENDS-unsubscribe >

>Return-Path:

>sentto-92704-53731-1148605106-marslites=msn.com@...

>X-OriginalArrivalTime: 26 May 2006 00:58:59.0892 (UTC)

>FILETIME=[92BFA740:01C6805F]

>

>hi group an Bonnie

>

> I saw Dr. Siddique last month and he told me that the only that works

>for people who have PLS is Bacfolen. I keep my mind open, though and I will

>another neurologist to find about Naltrexone.

>

>Bonnie Guzelf bguzelf@...> wrote:

> I just came from my neurologist. He says I am doing very well and have

>even improved a little. I asked him about ... Low Dose Naltrexone ... and

>he said he had never heard of it. He asked me to give him all the

>information and he would look into it. Can some of you who are taking

>this please email me with more information on the drug, the dosage, where

>you get it, who prescribed it and how you think it has helped you. I

>will pass it on to my doctor. Do Dr. Fink and Dr. Siddique and other PLS

>experts approve this treatment?

>Funny that my neuro is not aware of it. Maybe they should write a paper

>or something so that other doctors will have this information.

>Thanks...

>Bonnie G - Phoenix az

>

>

[Guest guest]

Clonazepam is the drug that works for me. but then i dont have a

definite dx of PLS. It reduces my startle problem significantly and

my spasticity and anxiety. I couldnt function without it.

I have yet to try LDN.

Aussie Maureen

> > I just came from my neurologist. He says I am doing very well

and have

> >even improved a little. I asked him about ... Low Dose Naltrexone

.... and

> >he said he had never heard of it. He asked me to give him all the

> >information and he would look into it. Can some of you who are

taking

> >this please email me with more information on the drug, the dosage,

where

> >you get it, who prescribed it and how you think it has helped you.

I

> >will pass it on to my doctor. Do Dr. Fink and Dr. Siddique and

other PLS

> >experts approve this treatment?

> >Funny that my neuro is not aware of it. Maybe they should write a

paper

> >or something so that other doctors will have this information.

> >Thanks...

> >Bonnie G - Phoenix az

> >

> >

[Guest guest]

Clonazepam is the drug that works for me. but then i dont have a

definite dx of PLS. It reduces my startle problem significantly and

my spasticity and anxiety. I couldnt function without it.

I have yet to try LDN.

Aussie Maureen

> > I just came from my neurologist. He says I am doing very well

and have

> >even improved a little. I asked him about ... Low Dose Naltrexone

.... and

> >he said he had never heard of it. He asked me to give him all the

> >information and he would look into it. Can some of you who are

taking

> >this please email me with more information on the drug, the dosage,

where

> >you get it, who prescribed it and how you think it has helped you.

I

> >will pass it on to my doctor. Do Dr. Fink and Dr. Siddique and

other PLS

> >experts approve this treatment?

> >Funny that my neuro is not aware of it. Maybe they should write a

paper

> >or something so that other doctors will have this information.

> >Thanks...

> >Bonnie G - Phoenix az

> >

> >

[Guest guest]

Clonazepam is the drug that works for me. but then i dont have a

definite dx of PLS. It reduces my startle problem significantly and

my spasticity and anxiety. I couldnt function without it.

I have yet to try LDN.

Aussie Maureen

> > I just came from my neurologist. He says I am doing very well

and have

> >even improved a little. I asked him about ... Low Dose Naltrexone

.... and

> >he said he had never heard of it. He asked me to give him all the

> >information and he would look into it. Can some of you who are

taking

> >this please email me with more information on the drug, the dosage,

where

> >you get it, who prescribed it and how you think it has helped you.

I

> >will pass it on to my doctor. Do Dr. Fink and Dr. Siddique and

other PLS

> >experts approve this treatment?

> >Funny that my neuro is not aware of it. Maybe they should write a

paper

> >or something so that other doctors will have this information.

> >Thanks...

> >Bonnie G - Phoenix az

> >

> >

[Guest guest]

I DONT THINK IM SUPPRISED AT ALL THAT OUR DOCTORS DONT KNOW MUCH OF

ANYTHING .MOST ARE IN A GLIDE MODE WHERE ILE JUST GET MY TIME IN AND

IM OUT OF HERE . INSTEAD OF GETTING UP TO SPEED ON THE LATEST .IN MY

TRADE WE HAVE MANDENTORY CONTINUING EDUCATION OR YOU WILL NOT GET YOUR

LICENSE RENEWED . CLASSES THROUGHOUT THE YEAR ARE HELD AND YOU MUST

ATTEND. THERES NO EXCUSE FOR NOT KEEPING UP TO SPEED IN YOUR

PROFESSION .DOCTORS ARE GIVEN SO MUCH LEWAY TO DO AS THEY PLEASE

BECAUSE WE PUT THEM ON A PEDESTAL (THATS OUR FAULT FOR NOT DEMANDING )

GEO

>

> I just came from my neurologist. He says I am doing very well and

have even improved a little. I asked him about ... Low Dose

Naltrexone ... and he said he had never heard of it. He asked me to

give him all the information and he would look into it. Can some of

you who are taking this please email me with more information on the

drug, the dosage, where you get it, who prescribed it and how you

think it has helped you. I will pass it on to my doctor. Do Dr.

Fink and Dr. Siddique and other PLS experts approve this treatment?

> Funny that my neuro is not aware of it. Maybe they should write a

paper or something so that other doctors will have this information.

> Thanks...

> Bonnie G - Phoenix az

>

>

[Guest guest]

Hey Geo,

Why are you shouting??? (shouting = all caps) Surely you're not one of

those people who think that because we can't speak we also can't hear,

so shout and exaggerate their lip movements???? :-)

If you have problems using the shift key could you please use all lower

case? :-) Much easier to read!

Thanks,

Geo wrote:

> I DONT THINK IM SUPPRISED AT ALL THAT OUR DOCTORS DONT KNOW MUCH OF

>

[Guest guest]

Yep, I'm all with you Gene! For a so-called expert he is just dead

wrong!! Quite a few of us with PLS are finding LDN of benefit and even

some people I know with ALS swear by it - it has significantly slowed

their progression and even given them improvement.

That said Bonnie, if you have had no change in the past year then you

may not notice anything with LDN as its primary purpose is to slow or

stop progression. However, about half of people using it do experience

improvement. In my case my walking improved a little inside a few weeks

and after about 9 months my urinary urgency suddenly improved. If you

start taking it expecting improvements then you are potentially setting

yourself up for failure.

There was someone who asked about LDN a few weeks ago and I apologise to

whoever it was for not replying then but for a month now I have been

receiving between 100 and 300 delivery failure emails per day for a

month now because some ar$ehole spammer has been sending out their spam

making it look like it was coming from my email address, so I haven't

been as good as I should at keeping up with my mail.

For them, Bonnie and anyone else who wants to see a whole lot of info on

LDN go to the archives for PLS-FRIENDS and find the emails I sent titled

" For Those About To Try To Get LDN " . Two were around the 8th March

(ignore the first) and more on 8th/9th April. Or if you want I can

forward them to you.

Eugene A. Secor wrote:

> With all due respect to Dr. Siddique, he is wrong. There are several

> of us

> in this group enjoying the benefits of LDN and it was commended to me

> by my

> neurologist. It has worked and is working for me and others here. Don't

> give up, you'll find a neuro more willing to try new approaches.

>

> Gene

>

> >

> >

> >hi group an Bonnie

> >

> > I saw Dr. Siddique last month and he told me that the only that works

> >for people who have PLS is Bacfolen. I keep my mind open, though and

> I will

> >another neurologist to find about Naltrexone.

> >

> >Bonnie Guzelf bguzelf@...> wrote:

> > I just came from my neurologist. He says I am doing very well

> and have

> >even improved a little. I asked him about ... Low Dose Naltrexone

> ... and

> >he said he had never heard of it. He asked me to give him all the

> >information and he would look into it. Can some of you who are taking

> >this please email me with more information on the drug, the dosage,

> where

> >you get it, who prescribed it and how you think it has helped you. I

> >will pass it on to my doctor. Do Dr. Fink and Dr. Siddique and

> other PLS

> >experts approve this treatment?

> >Funny that my neuro is not aware of it. Maybe they should write a

> paper

> >or something so that other doctors will have this information.

> >Thanks...

> >Bonnie G - Phoenix az

[Guest guest]

LOL LOL i forgot HMMMMMMMMMMM oh well youll have that Geo

>

> Hey Geo,

>

> Why are you shouting??? (shouting = all caps) Surely you're not

one of

> those people who think that because we can't speak we also can't

hear,

> so shout and exaggerate their lip movements???? :-)

>

> If you have problems using the shift key could you please use all

lower

> case? :-) Much easier to read!

>

> Thanks,

>

>

> Geo wrote:

>

> > I DONT THINK IM SUPPRISED AT ALL THAT OUR DOCTORS DONT KNOW MUCH

OF

> >

>

[Guest guest]

LOL LOL i forgot HMMMMMMMMMMM oh well youll have that Geo

>

> Hey Geo,

>

> Why are you shouting??? (shouting = all caps) Surely you're not

one of

> those people who think that because we can't speak we also can't

hear,

> so shout and exaggerate their lip movements???? :-)

>

> If you have problems using the shift key could you please use all

lower

> case? :-) Much easier to read!

>

> Thanks,

>

>

> Geo wrote:

>

> > I DONT THINK IM SUPPRISED AT ALL THAT OUR DOCTORS DONT KNOW MUCH

OF

> >

>