Re: Re: Those taking LDN

October 26, 2004

HI

I HAVEN'T BEEN ON THESE SITES BEFORE. HOW DO I GET IT PLEASE. I AM VERY INTERESTED. HOW ARE YOU DOING ON IT????

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

Date: 10/26/04 10:20:50

Subject: [low dose naltrexone] Re: Those taking LDN

Raelene, If we cant get LDN in AUstralia, what the heck have I been taking all these months?lolSeriously, there are many of us here in Australia taking LDN, and in just my circle of MSer friends? - there are 5 of us.Friday> Hi> Thanks for your reply. unfotunately in australia we can't get LDN.

October 26, 2004

Raelene,

Basically you need an open minded GP or neuro - probably a GP because

most neuros are closed minded when it comes to things like LDN. Go to

www.low dose naltrexone.org, print off lots of the info for the GP/neuro

to read and hope that if nothing else they will see that it can't hurt

you so will give you a script for it (preferably in 1.5mg capsules to

give you flexibility on dosage).

When you (eventually?) get a script you need to take it to a compounding

chemist to get made up. You obviously didn't see the posts about a week

ago relating in part to compounding chemists etc here in Australia so

here's the link I gave for a list of them around Australia -

http://www.pccarx.com.au/Pharmacy.htm

If you don't know a likely doctor one option may be to contact the

closest compounding chemists to you and see if they are allowed to tell

you the names of any doctors they know of who are prescribing it. Where

do you live? I know people in Vic, NSW, Qld and SA using it.

raelene yandell wrote:

HI

I HAVEN'T BEEN ON THESE SITES BEFORE. HOW DO I GET IT PLEASE. I AM VERY

INTERESTED. HOW ARE YOU DOING ON IT????

--

.

,-._|\ Covington

/ Oz \

\_,--.x/

v

October 26, 2004

In a message dated 10/26/2004 5:27:02 PM Central Daylight Time, etna@... writes:

Kathy,

I'm here for the party!! LDN rocks!!!

Marcie

I read everyones comments and suggestions daily and you really do feel like my extended family; care deeply about you all!

Is it possible to have an "on-line" party when we find the real cure??? Oh happy day!

Kathy H

October 26, 2004

Im am also on the Swank Diet but a little more extreme. Very little

meat (even fish or chicken) and lots of raw fruits and veggies and and

" ocean " of carrot juice . There seems to be no hope in the CRAB

drugs and many testimonials of how people improved on a diet change.

I was on Copaxone for 1 yr and got slowly worse. Went on Betaseron

for 8mos. and still continued to worsen. Not to mention the side

affects of both drugs (yuk!). A friend who is a physio and

acupunturist says many clients with MS on on the Swank diet with much

success but the key is consistency. I must say that is hard but the

longer I am on it the less appetite I have for the wrong foods. Had

some pasta last week and it did not agree with me at all ;(. Am still

slowly worsening but I know this could literally take years and the

diet totally agrees with my digestive system. It is very happy lately.

Ground flax seed really helps keep things moving since being so

immobile; not to mention the omega 3 oils.

I read everyones comments and suggestions daily and you really do feel

like my extended family; care deeply about you all!

Is it possible to have an " on-line " party when we find the real cure???

Oh happy day!

Kathy H

On 25-Oct-04, at 8:35 PM, alicecttn wrote:

>

> Try to not be discouraged. I just started LDN 4.5 a few weeks ago

> and have

> decided that the real test will be when I get my next MRI. If

> lesions are healed

> and things are looking good I'll know its working. I am also doing

> the Dr.

> Swank, Multiple Sclorosis Diet along with anything my MD, ND tells me

> to do.

> He has a lot of ideas of things to help me. However I did feel more

> energy

> immediately after taking the LDN, all else remains the same as I am

> in the

> middle of a new flare up and I know I may be stuck with it. We'll see.

>

> But things take time and we must be patient. For instance, with Dr.

> Swank's

> diet, he says it take a few years before you really know if it is

> working. I think it

> will be less time with the LDN from what I've been hearing but as my

> mom

> tells me " Be patient " and let it work.

>

> Take care and stay in touch, Alice

>

> >

> > I just started taking LDN (3mg) last Saturday night, 10/23/04.

> > Then increasing to 4.5 mg after 7 days. I was just wondering and I

> > know everyone is different but about how long before you notice any

> > changes. Right now I sleep ok, been getting up about every two -

> > three hours to urinate. That's normal for me. Had some dry mouth.

> > Still have everything from before. Stiffness, Spasms. I know 2 days

> > is not enough but I was just wondering how others reacted.

> > Thanks.

> > ADJ

>

October 26, 2004

Raelene,

I sent the entire package about LDN to my neurologist a few weeks ago. No

response. I sent the same packet to my GP who called me that same day and gave

the script to the compounding pharmacy in the area. I have felt better. I

wanted to feel great, but better is better than what I was experiencing

Good luck and Peace!

Vickie

Raelene,

Basically you need an open minded GP or neuro - probably a GP because

most neuros are closed minded when it comes to things like LDN. Go to

www.low dose naltrexone.org, print off lots of the info for the GP/neuro

to read and hope that if nothing else they will see that it can't hurt

you so will give you a script for it (preferably in 1.5mg capsules to

give you flexibility on dosage).

When you (eventually?) get a script you need to take it to a compounding

chemist to get made up. You obviously didn't see the posts about a week

ago relating in part to compounding chemists etc here in Australia so

here's the link I gave for a list of them around Australia -

http://www.pccarx.com.au/Pharmacy.htm

If you don't know a likely doctor one option may be to contact the

closest compounding chemists to you and see if they are allowed to tell

you the names of any doctors they know of who are prescribing it. Where

do you live? I know people in Vic, NSW, Qld and SA using it.

raelene yandell wrote:

HI

I HAVEN'T BEEN ON THESE SITES BEFORE. HOW DO I GET IT PLEASE. I AM VERY

INTERESTED. HOW ARE YOU DOING ON IT????

--

.

,-._|\ Covington

/ Oz \

\_,--.x/

v

October 26, 2004

HI VICKIE

DID THE SAME THING...MY NEURO DIDN'T CARE BUT LAST NIGHT WENT TO MY GP.....HE SAID IT'S NOT DANGEROUS AND I DESERVE A TRY SO GOOD NEWS HE IS GIVING IT TO ME.......THANKS FOR YOUR REPLY IT IS MUCH APPRECIATE

RAELENE

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

From: low dose naltrexone

Date: 10/27/04 07:57:41

low dose naltrexone

Subject: Re: [low dose naltrexone] Re: Those taking LDN

Raelene,I sent the entire package about LDN to my neurologist a few weeks ago. No response. I sent the same packet to my GP who called me that same day and gave the script to the compounding pharmacy in the area. I have felt better. I wanted to feel great, but better is better than what I was experiencingGood luck and Peace!Vickie

October 26, 2004

HI GARY

THANKS FOR YOUR REPLY......GOODS NEWS AND YOUR RIGHT MY GP AT LONG LAST HAS AGREED ,PROBABLY TO SHUT ME UP......LOOL. MY NEURO DIDN'T WANT TO KNOW.

THANKS AGAIN IT'S A GREAT HELP

RAELENE

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

From: low dose naltrexone

Date: 10/27/04 00:05:46

low dose naltrexone

Subject: Re: [low dose naltrexone] Re: Those taking LDN

Raelene,Basically you need an open minded GP or neuro - probably a GP because most neuros are closed minded when it comes to things like LDN. Go to www.low dose naltrexone.org, print off lots of the info for the GP/neuro to read and hope that if nothing else they will see that it can't hurt you so will give you a script for it (preferably in 1.5mg capsules to give you flexibility on dosage).When you (eventually?) get a script you need to take it to a compounding chemist to get made up. You obviously didn't see the posts about a week ago relating in part to compounding chemists etc here in Australia so here's the link I gave for a list of them around Australia - http://www.pccarx.com.au/Pharmacy.htmIf you don't know a likely doctor one option may be to contact the closest compounding chemists to you and see if they are allowed to tell you the names of any doctors they know of who are prescribing it. Where do you live? I know people in Vic, NSW, Qld and SA using it.raelene yandell wrote:HII HAVEN'T BEEN ON THESE SITES BEFORE. HOW DO I GET IT PLEASE. I AM VERY INTERESTED. HOW ARE YOU DOING ON IT????-- . ,-._|\ Covington / Oz \ \_,--.x/ v

October 27, 2004

Yes, Kathy. An extended family exists here. As any family, there is an antagonistic comment offered, every so often ! Yet we do love ...all of us !

As a family member, I ask all here for advise.

Here is the question.

There is an MS Center here in Columbus Ohio. It must be new, I have yet to hear about it. Until today. A drug rep. from Sereno called me up and asked me to attend a meeting tomorrow night. (Wed) She wanted me to get the word out to my support group I facilitate and another I visit. That was her message she left at my home answering message, along with saying there would be a quest speaker, world reknown, Dr. Romahan. He was instrumental in Provigil medicine development and is very pro- Novantrone and Rebif supporter.

Four responses,more on the emotional side from me.

...I have been on LDN for 2 months now.

I quit Beta Seron ,in preparation.

...I will go, presumingly to be wined and dined ! Drug reps. have a way of providing !

... I lost my job, thanks to Novantrone. It put me under !!

...Assuming there is discussion.....shall I bring up LDN ?

There will be other 'power people' there...I assume NMSS people' and others.

...MY QUESTION TO YOU ALL...what shall my approach be ?

I will respond back to you all, if there is a desired report.

Thank you for any/all thoughts.

Jon Sayers SPMS Columbus, Ohio

-----

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October 27, 2004

It would be an excellent opportunity. When you think of how much we

are bombarded with advertisements re the other drugs and the damage

they do...?? We would all be behind you in spirit (and prayer) I'm

sure. Speak from your heart and personal experience; you cant go

wrong.

Kathy

On 26-Oct-04, at 6:57 PM, Fayers wrote:

> Yes, Kathy. An extended family exists here. As any family, there is an

> antagonistic comment offered, every so often ! Yet we do love ...all

> of us !

> As a family member, I ask all here for advise.

> Here is the question.

> There is an MS Center here in Columbus Ohio. It must be new, I have

> yet to hear about it. Until today. A drug rep. from Sereno called me

> up and asked me to attend a meeting tomorrow night. (Wed) She wanted

> me to get the word out to my support group I facilitate and another I

> visit. That was her message she left at my home answering message,

> along with saying there would be a quest speaker, world reknown, Dr.

> Romahan. He was instrumental in Provigil medicine development and is

> very pro- Novantrone and Rebif supporter.

>

> Four responses,more on the emotional side from me.

> ..I have been on LDN for 2 months now.

> I quit Beta Seron ,in preparation.

> ..I will go, presumingly to be wined and dined ! Drug reps. have a

> way of providing !

> .. I lost my job, thanks to Novantrone. It put me under !!

> ..Assuming there is discussion.....shall I bring up LDN ?

>

> There will be other 'power people' there...I assume NMSS people' and

> others.

>

> ..MY QUESTION TO YOU ALL...what shall my approach be ?

> I will respond back to you all, if there is a desired report.

> Thank you for any/all thoughts.

>

> Jon Sayers SPMS Columbus, Ohio

>

> -----

>

> ADVERTISEMENT

>

> <f2_free2_300x250_def_0904.gif>

> <l.gif>

>

October 27, 2004

I would suggest speaking calmly and clearly of your personal experiences. You don't have to be antagonistic, nor do you have to draw conclusions for anyone listening. Your experiences speak for themselves. Of course it wouldn't hurt to suggest anyone considering any drug treatment look over the alternatives, including the LDN that has been so much gentler to the patients using it than so many other MS treatments...

JT

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

From: Fayers

low dose naltrexone

Sent: Tuesday, October 26, 2004 5:57 PM

Subject: Re: [low dose naltrexone] Re: Those taking LDN

Yes, Kathy. An extended family exists here. As any family, there is an antagonistic comment offered, every so often ! Yet we do love ...all of us !

As a family member, I ask all here for advise.

Here is the question.

There is an MS Center here in Columbus Ohio. It must be new, I have yet to hear about it. Until today. A drug rep. from Sereno called me up and asked me to attend a meeting tomorrow night. (Wed) She wanted me to get the word out to my support group I facilitate and another I visit. That was her message she left at my home answering message, along with saying there would be a quest speaker, world reknown, Dr. Romahan. He was instrumental in Provigil medicine development and is very pro- Novantrone and Rebif supporter.

Four responses,more on the emotional side from me.

...I have been on LDN for 2 months now.

I quit Beta Seron ,in preparation.

...I will go, presumingly to be wined and dined ! Drug reps. have a way of providing !

... I lost my job, thanks to Novantrone. It put me under !!

...Assuming there is discussion.....shall I bring up LDN ?

There will be other 'power people' there...I assume NMSS people' and others.

...MY QUESTION TO YOU ALL...what shall my approach be ?

I will respond back to you all, if there is a desired report.

Thank you for any/all thoughts.

Jon Sayers SPMS Columbus, Ohio

-----

<f2_free2_300x250_def_0904.gif><l.gif>

October 27, 2004

Hope you have better luck than a few of us did at an MS dinner. Told the big shot neuro during the question and answer period how well we were all feeling with the LDN and why has it not been looked into......and his response was.....

"If I tell you to eat asparagus and you do and then feel better you believe that the asparagus helped you" blabla bala.....

Of course he was getting big bucks to speak from the CRAB companies who had pens and waterbottles to give out too.

So good luck, it is worth a try and a few people will approach you afterwards so at least you can tell them about it. Kiki

October 27, 2004

Hi Jon,

When I first started taking LDN, even though my MS Clinic was being wined and dined by the big drug companies I most certainly stood up and talked about LDN! In fact, I even passed out papers on how LDN works! Sure, it felt strange at first. But soon everyone wanted to find out more about ldn and I was able to schedule a presentation about nothing but LDN! My recommendation would be start slowly at first and gradually get to the point of being able to stand up and give a presentation and hand out whatever materials you feel might me helpful. Hey, they don't call us MS Rebels for nothing. . . lol

From: Fayers [mailto:zekesayers@...] Sent: Tuesday, October 26, 2004 8:58 PMlow dose naltrexone Subject: Re: [low dose naltrexone] Re: Those taking LDN

Yes, Kathy. An extended family exists here. As any family, there is an antagonistic comment offered, every so often ! Yet we do love ...all of us !

As a family member, I ask all here for advise.

Here is the question.

There is an MS Center here in Columbus Ohio. It must be new, I have yet to hear about it. Until today. A drug rep. from Sereno called me up and asked me to attend a meeting tomorrow night. (Wed) She wanted me to get the word out to my support group I facilitate and another I visit. That was her message she left at my home answering message, along with saying there would be a quest speaker, world reknown, Dr. Romahan. He was instrumental in Provigil medicine development and is very pro- Novantrone and Rebif supporter.

Four responses,more on the emotional side from me.

...I have been on LDN for 2 months now.

I quit Beta Seron ,in preparation.

...I will go, presumingly to be wined and dined ! Drug reps. have a way of providing !

... I lost my job, thanks to Novantrone. It put me under !!

...Assuming there is discussion.....shall I bring up LDN ?

There will be other 'power people' there...I assume NMSS people' and others.

...MY QUESTION TO YOU ALL...what shall my approach be ?

I will respond back to you all, if there is a desired report.

Thank you for any/all thoughts.

Jon Sayers SPMS Columbus, Ohio

-----

<f2_free2_300x250_def_0904.gif><l.gif>

October 27, 2004

Good for you Kiki for saying something. Alot of arrogance out there

in the Medical community. The " God complex " is very much alive and

well and the pharmaceutical companies are feeding their already huge

egos. If anything I think most physicians are afraid to deviate from

what they've been taught for fear of being alienated by their

colleagues. Peer pressure and having to think " out side " the box are 2

things physicians in general dont deal with well.

On 27-Oct-04, at 7:11 AM, noclue915@... wrote:

> Hope you have better luck than a few of us did at an MS dinner. Told

> the big shot neuro during the question and answer period how well we

> were all feeling with the LDN and why has it not been looked

> into......and his response was.....

> " If I tell you to eat asparagus and you do and then feel better you

> believe that the asparagus helped you " blabla bala.....

> Of course he was getting big bucks to speak from the CRAB companies

> who had pens and waterbottles to give out too.

> So good luck, it is worth a try and a few people will approach you

> afterwards so at least you can tell them about it. Kiki

>

October 29, 2004

HI family,

YES, i traveled to the new OSU MS center, here in Columbus,Ohio.

There were three drug reps there from Sereno and Dr. Rohmahan. About 20 persons were present, from RRMS to PPMS.

A smooth testmony from a lady on Rebif. (yes,hired by Sereno....no not Terri Garr...darn !)

Dr. Rohmahan gave a presentation. And the fielded questions.

I complimented him, which solicited an element of humility. I said , God and oneself are our best doctors. He agreed.

I complimented him on Provigil. Then I said, I lost my professional part time chaplaincy position because of Novantrone. He said he was sorry.

I asked the group about research the members did on their computers about MS. Many said they did. I suggested this website...quick & easy to write down,suggesting it offered much anadotal info on LDN. .Remedyfind.com .

I said again...Remedyfind.com....I saw people writing this website down ...

Which laid into this final question....about his thoughts on LDN....he said it built up too much calcium and there were only anadotal studies on it. Otherwise, he spoke about the 4 approved drugs.

He said he could not support any drug, based on anadotal studies. I said, sure,I understood.

I accomplished what I needed to do.....get the word out and the website(Remedyfind.com) which speaks for it self. It gives LDN the highest rating. Rebif is somewhere down in the middle. Go check it out !

Oh the snacks were delicious as well !

Thank you for this opportunity to report to you all about this meeting. Oh, I did say,out loud,that there was this website of 1200 plus members, which I would be reporting too !

Blessings,

Jon Sayers spms

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

From: noclue915@...

low dose naltrexone

Sent: Wednesday, October 27, 2004 9:11 AM

Subject: Re: [low dose naltrexone] Re: Those taking LDN

Hope you have better luck than a few of us did at an MS dinner. Told the big shot neuro during the question and answer period how well we were all feeling with the LDN and why has it not been looked into......and his response was.....

"If I tell you to eat asparagus and you do and then feel better you believe that the asparagus helped you" blabla bala.....

Of course he was getting big bucks to speak from the CRAB companies who had pens and waterbottles to give out too.

So good luck, it is worth a try and a few people will approach you afterwards so at least you can tell them about it. Kiki

October 29, 2004

Most excellent!!! Great work .

Jim(ms)

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

From: Fayers

low dose naltrexone

Sent: Thursday, October 28, 2004 10:31 PM