A POST FROM MS WATCHERS...LISA

[Guest guest]

From: " Sally " <salpal@d...>

Date: Wed Nov 12, 2003 5:43 pm

Subject: Re: Hey Larry

HI STEVE,

LISA IS A GOOD SOUL AND SHE DOES A LOT OF GOOD FOR A LOT OF PEOPLE.

I THINK HER TECHNIQUE MAY BE WRONG, BUT HER HEART IS IN THE RIGHT

PLACE. I THINK WE SHOULD TRY TO GIVE HER A FAIR SHAKE. I, TOO,

ARGUED WITH HER ABOUT LDN, AND I STOPPED, BECAUSE I REALIZED THAT WE

WERE BOTH WRONG.....LDN HAS NOT BEEN PROVEN TO STOP THE PROGRESSION

OF MS. I BELIEVE IT WILL AND IT HAS SO FAR......BUT ONLY TIME WILL

REALLY TELL. lISA WAS WRONG FOR PUSHING AVONEX TO ALL THE NEW

COMERS, BECAUSE FOR MOST OF US...AVONEX SUCKS! IT REALLY WASN'T

WORKING FOR LISA EITHER.....

SHE TRIED LDN AND HAD A BAD EXPERIENCE WITH IT AND STOPPED

IT.....SHE IS NOW GOING TO TRY NAVRATALONE...A LAST RESORT EFFORT TO

TRY AND HELP HER TO TAKE CARE OF HER KIDS.

LISA'S BODY HAS BEEN RAVAGED BY MS AND THE MEDS (ESPECIALLY

STEROIDS) AND LIKE MOST OF US, IS JUST TRYING TO FIND SOMETHING TO

HELP HERSELF WHILE TRYING TO HELP OTHERS. SHE DID NOT BLAME LDN FOR

HER EXACERBATION....SHE EVEN SAID THAT THE EXACERBATION PROBABLY

STARTED AFTER SHE WENT OFF AVONEX AND BEFORE STARTING LDN....BUT

THAT'S JUST GUESSING, BECAUSE IT ALL HAPPENED TO HER DURING HER LDN

TRIAL. THAT'S WHERE SHE IS COMING FROM AND I CAN'T SAY THAT I

WOULDN'T COME TO THE SAME CONCLUSIONS...IF IT WERE ME.

SO LET'S BE KIND TO ONE ANOTHER...WE ARE ALL IN THE SAME

BOAT.....SOME OF US JUST USE DIFFERENT PADDLES. NAYSAYERS ARE

IMPORTANT AND NECESSARY TO KEEP US ON OUR TOES AND RESEARCHING

OPTIONS. THE NAYSAYERS LEAD ME TO LDN...LOL

HUGS, SALLY

> I see why you left LeeLee's group. I just terminated my membership

> myself. This is practically blaming her trying LDN for

causing a

> bad exacerbation, and then she posts this:

>

> IN LIGHT OF ALL OF THE RECENT LDN AND MS TALK, I CAME UPON AN

ARTICLE

> IN THIS MONTHS MSFOCUS MAGAZINE WHERE A PERSON WROTE IN A QUESTION

> ABOUT LDN AND IT WAS ANSWERED..I'M TYPING IT INTO OUR BOARDS SINCE

I

> DON'T HAVE A SCANNER SO THAT ALL OF YOU MIGHT HAVE A BIT MORE

INSIGHT

> TO THIS MEDICATION THAT YOU ARE HEARING A LOT OF HOUPLA ABOUT...SO

> HERE IT IS...

>

> Q. LOW DOSE NALTREXONE

>

> I WOULD BE GRATEFUL IF YOU COULD PROVIDE SOME INFORMATION ABOUT

LOW

> DOSE NALTREXONE FOR TREATMENT OF MULTIPLE SCLEROSIS.

>

> A.

> MANY PATIENTS ARE INQUIRING ABOUT LOW-DOSE NALTREXONE FOR MS.

> NALTREXONE IS COMMERCIALLY AVAILABLE UNDER THE NAME REVIA. THIS

> PRODUCT IS A NARCOTIC ANTAGONIST, MEANING THAT IT BLOCKS THE

ACTION

> OF NARCOTICS AND ALCOLHOL IN THE BODY. NALTREXONE CAN CAUSE

> INSOMNIA, NERVOUSNESS, HEADACHE, ABDOMINAL CRAMPING, NAUSEA,

> VOMITING, KIDNEY AND LIVER DAMAGE. IT IS CONTRAINDICATED FOR USE

> WITH ALL NARCOTICS (OXYCONTIN, DURAGESIC,PERCOSCET, LORTAB, ETC)

> THIS DRUG IS BEING MARKETED AS A PRODUCT THAT CAN REDUCE MS

RELAPSES,

> FATIGUE AND SPASMS. NO PUBLISHED CLINICAL DATA EXISTS ON THIS

> PRODUCT. CONTROLLED, RANDOMIZED,, CLINICAL TRIALS ARE NEEDED TO

> EXAMINE THE USE OF LOW-DOSE NALTREXONE IN MS. AT THIS POINT, IT

> SHOULD NOT BE CONSIDERED AN ALTERNATIVE FOR THE CURRENT DISEASE

> MODIFYING THERAPIES:BETASERON, AVONEX, COPOXONE, REBIF OR

> NOVANTRONE. MY ADVICE FOR PATIENTS IS TO AVOIDE PRODUCTS THAT

LACK

> PROOF OF SAFETY AND EFFICACY.

> ELLEN GUTHRIE, PHARM. D.

>

> THE ONLY REASON FOR ME POSTING THIS INFORMATION IS FOR THE PURPOSE

OF

> POSTING INFORMATION AND GIVING US THE POWER OF KNOWLEDGE THAT

ALLOWS

> US TO MAKE INFORMED DECISIONS WITH OUR DOCTORS FOR OURSELVES...LISA

>

> (from LeeLee's MS group: )

>

>

> All this after telling everyone not to judge a persons choice of

> treatment, and to just wish them the best of luck. I think

works

> for the big Pharma!

[Guest guest]

Sorry for screaming at you Chris....most of us msers do have eye

trouble, and I thought I was being considerate to those people who

do.......LUCKY YOU

> > I see why you left LeeLee's group. I just terminated my

membership

> > myself. This is practically blaming her trying LDN for

> causing a

> > bad exacerbation, and then she posts this:

> >

> > IN LIGHT OF ALL OF THE RECENT LDN AND MS TALK, I CAME UPON AN

> ARTICLE

> > IN THIS MONTHS MSFOCUS MAGAZINE WHERE A PERSON WROTE IN A

QUESTION

> > ABOUT LDN AND IT WAS ANSWERED..I'M TYPING IT INTO OUR BOARDS

SINCE

> I

> > DON'T HAVE A SCANNER SO THAT ALL OF YOU MIGHT HAVE A BIT MORE

> INSIGHT

> > TO THIS MEDICATION THAT YOU ARE HEARING A LOT OF HOUPLA

ABOUT...SO

> > HERE IT IS...

> >

> > Q. LOW DOSE NALTREXONE

> >

> > I WOULD BE GRATEFUL IF YOU COULD PROVIDE SOME INFORMATION ABOUT

> LOW

> > DOSE NALTREXONE FOR TREATMENT OF MULTIPLE SCLEROSIS.

> >

> > A.

> > MANY PATIENTS ARE INQUIRING ABOUT LOW-DOSE NALTREXONE FOR MS.

> > NALTREXONE IS COMMERCIALLY AVAILABLE UNDER THE NAME REVIA. THIS

> > PRODUCT IS A NARCOTIC ANTAGONIST, MEANING THAT IT BLOCKS THE

> ACTION

> > OF NARCOTICS AND ALCOLHOL IN THE BODY. NALTREXONE CAN CAUSE

> > INSOMNIA, NERVOUSNESS, HEADACHE, ABDOMINAL CRAMPING, NAUSEA,

> > VOMITING, KIDNEY AND LIVER DAMAGE. IT IS CONTRAINDICATED FOR USE

> > WITH ALL NARCOTICS (OXYCONTIN, DURAGESIC,PERCOSCET, LORTAB, ETC)

> > THIS DRUG IS BEING MARKETED AS A PRODUCT THAT CAN REDUCE MS

> RELAPSES,

> > FATIGUE AND SPASMS. NO PUBLISHED CLINICAL DATA EXISTS ON THIS

> > PRODUCT. CONTROLLED, RANDOMIZED,, CLINICAL TRIALS ARE NEEDED TO

> > EXAMINE THE USE OF LOW-DOSE NALTREXONE IN MS. AT THIS POINT, IT

> > SHOULD NOT BE CONSIDERED AN ALTERNATIVE FOR THE CURRENT DISEASE

> > MODIFYING THERAPIES:BETASERON, AVONEX, COPOXONE, REBIF OR

> > NOVANTRONE. MY ADVICE FOR PATIENTS IS TO AVOIDE PRODUCTS THAT

> LACK

> > PROOF OF SAFETY AND EFFICACY.

> > ELLEN GUTHRIE, PHARM. D.

> >

> > THE ONLY REASON FOR ME POSTING THIS INFORMATION IS FOR THE

PURPOSE

> OF

> > POSTING INFORMATION AND GIVING US THE POWER OF KNOWLEDGE THAT

> ALLOWS

> > US TO MAKE INFORMED DECISIONS WITH OUR DOCTORS FOR

OURSELVES...LISA

> >

> > (from LeeLee's MS group: )

> >

> >

> > All this after telling everyone not to judge a persons choice of

> > treatment, and to just wish them the best of luck. I think

> works

> > for the big Pharma!

[Guest guest]

Sally,

I think he was referring to the post that I copied and pasted from

at LeeLee's.

I have nothing against , I DO feel that you are correct when

you said that she goes about her actions the wrong way, I do too at

times. This whole incident on her site and the way she posts just

really aggravated me.

[Guest guest]

Sally,

You are a very kind and compassionate person and I for one love to read your

post. Keep on caring.

Marie

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

From: " Sally " <salpal@...>

<low dose naltrexone >

Sent: Wednesday, November 12, 2003 6:05 PM

Subject: [low dose naltrexone] A POST FROM MS WATCHERS...LISA

> From: " Sally " <salpal@d...>

> Date: Wed Nov 12, 2003 5:43 pm

> Subject: Re: Hey Larry

>

>

>

> HI STEVE,

>

> LISA IS A GOOD SOUL AND SHE DOES A LOT OF GOOD FOR A LOT OF PEOPLE.

> I THINK HER TECHNIQUE MAY BE WRONG, BUT HER HEART IS IN THE RIGHT

> PLACE. I THINK WE SHOULD TRY TO GIVE HER A FAIR SHAKE. I, TOO,

> ARGUED WITH HER ABOUT LDN, AND I STOPPED, BECAUSE I REALIZED THAT WE

> WERE BOTH WRONG.....LDN HAS NOT BEEN PROVEN TO STOP THE PROGRESSION

> OF MS. I BELIEVE IT WILL AND IT HAS SO FAR......BUT ONLY TIME WILL

> REALLY TELL. lISA WAS WRONG FOR PUSHING AVONEX TO ALL THE NEW

> COMERS, BECAUSE FOR MOST OF US...AVONEX SUCKS! IT REALLY WASN'T

> WORKING FOR LISA EITHER.....

>

> SHE TRIED LDN AND HAD A BAD EXPERIENCE WITH IT AND STOPPED

> IT.....SHE IS NOW GOING TO TRY NAVRATALONE...A LAST RESORT EFFORT TO

> TRY AND HELP HER TO TAKE CARE OF HER KIDS.

>

> LISA'S BODY HAS BEEN RAVAGED BY MS AND THE MEDS (ESPECIALLY

> STEROIDS) AND LIKE MOST OF US, IS JUST TRYING TO FIND SOMETHING TO

> HELP HERSELF WHILE TRYING TO HELP OTHERS. SHE DID NOT BLAME LDN FOR

> HER EXACERBATION....SHE EVEN SAID THAT THE EXACERBATION PROBABLY

> STARTED AFTER SHE WENT OFF AVONEX AND BEFORE STARTING LDN....BUT

> THAT'S JUST GUESSING, BECAUSE IT ALL HAPPENED TO HER DURING HER LDN

> TRIAL. THAT'S WHERE SHE IS COMING FROM AND I CAN'T SAY THAT I

> WOULDN'T COME TO THE SAME CONCLUSIONS...IF IT WERE ME.

>

> SO LET'S BE KIND TO ONE ANOTHER...WE ARE ALL IN THE SAME

> BOAT.....SOME OF US JUST USE DIFFERENT PADDLES. NAYSAYERS ARE

> IMPORTANT AND NECESSARY TO KEEP US ON OUR TOES AND RESEARCHING

> OPTIONS. THE NAYSAYERS LEAD ME TO LDN...LOL

>

> HUGS, SALLY

>

>

>

>

>

>

>

>

>

> > I see why you left LeeLee's group. I just terminated my membership

> > myself. This is practically blaming her trying LDN for

> causing a

> > bad exacerbation, and then she posts this:

> >

> > IN LIGHT OF ALL OF THE RECENT LDN AND MS TALK, I CAME UPON AN

> ARTICLE

> > IN THIS MONTHS MSFOCUS MAGAZINE WHERE A PERSON WROTE IN A QUESTION

> > ABOUT LDN AND IT WAS ANSWERED..I'M TYPING IT INTO OUR BOARDS SINCE

> I

> > DON'T HAVE A SCANNER SO THAT ALL OF YOU MIGHT HAVE A BIT MORE

> INSIGHT

> > TO THIS MEDICATION THAT YOU ARE HEARING A LOT OF HOUPLA ABOUT...SO

> > HERE IT IS...

> >

> > Q. LOW DOSE NALTREXONE

> >

> > I WOULD BE GRATEFUL IF YOU COULD PROVIDE SOME INFORMATION ABOUT

> LOW

> > DOSE NALTREXONE FOR TREATMENT OF MULTIPLE SCLEROSIS.

> >

> > A.

> > MANY PATIENTS ARE INQUIRING ABOUT LOW-DOSE NALTREXONE FOR MS.

> > NALTREXONE IS COMMERCIALLY AVAILABLE UNDER THE NAME REVIA. THIS

> > PRODUCT IS A NARCOTIC ANTAGONIST, MEANING THAT IT BLOCKS THE

> ACTION

> > OF NARCOTICS AND ALCOLHOL IN THE BODY. NALTREXONE CAN CAUSE

> > INSOMNIA, NERVOUSNESS, HEADACHE, ABDOMINAL CRAMPING, NAUSEA,

> > VOMITING, KIDNEY AND LIVER DAMAGE. IT IS CONTRAINDICATED FOR USE

> > WITH ALL NARCOTICS (OXYCONTIN, DURAGESIC,PERCOSCET, LORTAB, ETC)

> > THIS DRUG IS BEING MARKETED AS A PRODUCT THAT CAN REDUCE MS

> RELAPSES,

> > FATIGUE AND SPASMS. NO PUBLISHED CLINICAL DATA EXISTS ON THIS

> > PRODUCT. CONTROLLED, RANDOMIZED,, CLINICAL TRIALS ARE NEEDED TO

> > EXAMINE THE USE OF LOW-DOSE NALTREXONE IN MS. AT THIS POINT, IT

> > SHOULD NOT BE CONSIDERED AN ALTERNATIVE FOR THE CURRENT DISEASE

> > MODIFYING THERAPIES:BETASERON, AVONEX, COPOXONE, REBIF OR

> > NOVANTRONE. MY ADVICE FOR PATIENTS IS TO AVOIDE PRODUCTS THAT

> LACK

> > PROOF OF SAFETY AND EFFICACY.

> > ELLEN GUTHRIE, PHARM. D.

> >

> > THE ONLY REASON FOR ME POSTING THIS INFORMATION IS FOR THE PURPOSE

> OF

> > POSTING INFORMATION AND GIVING US THE POWER OF KNOWLEDGE THAT

> ALLOWS

> > US TO MAKE INFORMED DECISIONS WITH OUR DOCTORS FOR OURSELVES...LISA

> >

> > (from LeeLee's MS group: )

> >

> >

> > All this after telling everyone not to judge a persons choice of

> > treatment, and to just wish them the best of luck. I think

> works

> > for the big Pharma!

>

>

>

>

>

>