various

[Guest guest]

OK, so maybe a volunteer army of LDN testers is not needed here.

I this forum completely MS-related or are other diseases allowed?

Re placebos: the reason for testing against placebos is the strong

placebo effect. One could argue that the placebo effect is the only

thing at work with LDN. It is very powerful and can result in real

healing of many diseases. But generally it doesn't last. That's one

of the reasons drug trials take so long.

(I even had a very paranoid thought that since I never heard of LDN

before a few weeks ago and *nobody* in the MS business, including doctors,

nurses, therapists, volunteers, sufferers, guest speakers, authors,

web page writers, alternative medicine proponents, etc. *ever* mentioned

LDN to *me* anyway and it has supposedly been around for decades, that

maybe this is all a plot to do field testing of the placebo effect!

See the weird things the mind can get up to? -- Does Dr. Bernard Bihari

really exist?)

Anyway, the reason I ask about other diseases (vitaligo, CLL, lupus,

rheumatiod arthritis, vasculitis) is that members of my family have all

of these, and I have MS. They are nearly all autoimmune.

I think this Dr M R Lawrence MRCS LRCP is taking a big risk saying don't

try LDN at the same time as interferon. I don't know what it costs in

the US but here it costs the earth! I have always felt guilty taking a

drug costing more per year than many people in poorer countries make in

a lifetime! I don't think we'll get Berlex, Serono, or Biogen to pay for

an LDN trial. But we may get the insurance companies to!

I too would like to hear stories of LDN failure -- just so I can weigh

them against the success stories. Or is it really predominantly successful?

So I'm a pessimist. So sue me :-)

Hope this doesn't offend anyone. I still have great hope and I still

would like to try LDN therapy. I just started Avonex because I was tired

of having every other day (post-Rebif) be a bad one. But I am afraid to

stop interferon altogether because my last big relapse came after I stopped

taking it once before. I think I am secondary progressive now. Apologies

to those who don't even have MS, for my jargon and MS-centredness.

See you can infer a lot of things from anecdotes (not antidotes!). I infer

that

maybe I can't stop taking interferon, and there has been no drug trial to

prove

*that*.

As long as the scientists stay away because there is no funding, we will

stay

in the shadows of partial or wrong information. For instance, did you know

that the medical term for what D. Lawrence calls " accommodation " (at least

in

this country) is tachyphylaxis, and it's why you can become " immune " to

poisons

(Rasputin was reputed to be immune to them). I don't believe this is a

problem

for many LDN users but it may be what is happening to those failures I

*have*

seen information about on this list (Sally?).

-Sullivan

[Guest guest]

great questions. If accomodation (tachyphylaxis) does happen

with poisons, or LDN, could it also happen with the interferons?

[Guest guest]

Hi

Yes anyone who wants to ask questions or discuss LDN is welcome to here. LOL

on the placebo effect study. I totally agree that a placebo effect exists

but I don't think that is the case here personally. This whole thing is

pretty much a catch 22 situation. No doctors know about it cuz it is not

clinically tested and therefore not even considered. It is not clinically

tested cuz no doctors know about it...lol. I think it all boils down to

money in the end. I do think that are several diseases that the LDN helps

but I just don't know which ones offhand...As far as those ABCR's you are

right..they are very expensive and only claim to slow progression...not good

enough for me. Did you say you are taking one of the ABCr's? Only Copaxone

can be taken with the LDN. The others will cancel each other out and there

will be nothing to help you if that is what you are doing. Please take care.

Oh and yes all of the stories are positive from what I have seen. Joyce.

From: " Sullivan "

To:

Subject: [low dose naltrexone] various

Date: Mon, 18 Aug 2003 10:44:19 -0400

OK, so maybe a volunteer army of LDN testers is not needed here.

I this forum completely MS-related or are other diseases allowed?

Re placebos: the reason for testing against placebos is the strong

placebo effect. One could argue that the placebo effect is the only

thing at work with LDN. It is very powerful and can result in real

healing of many diseases. But generally it doesn't last. That's one

of the reasons drug trials take so long.

(I even had a very paranoid thought that since I never heard of LDN

before a few weeks ago and *nobody* in the MS business, including doctors,

nurses, therapists, volunteers, sufferers, guest speakers, authors,

web page writers, alternative medicine proponents, etc. *ever* mentioned

LDN to *me* anyway and it has supposedly been around for decades, that

maybe this is all a plot to do field testing of the placebo effect!

See the weird things the mind can get up to? -- Does Dr. Bernard Bihari

really exist?)

Anyway, the reason I ask about other diseases (vitaligo, CLL, lupus,

rheumatiod arthritis, vasculitis) is that members of my family have all

of these, and I have MS. They are nearly all autoimmune.

I think this Dr M R Lawrence MRCS LRCP is taking a big risk saying don't

try LDN at the same time as interferon. I don't know what it costs in

the US but here it costs the earth! I have always felt guilty taking a

drug costing more per year than many people in poorer countries make in

a lifetime! I don't think we'll get Berlex, Serono, or Biogen to pay for

an LDN trial. But we may get the insurance companies to!

I too would like to hear stories of LDN failure -- just so I can weigh

them against the success stories. Or is it really predominantly successful?

So I'm a pessimist. So sue me :-)

Hope this doesn't offend anyone. I still have great hope and I still

would like to try LDN therapy. I just started Avonex because I was tired

of having every other day (post-Rebif) be a bad one. But I am afraid to

stop interferon altogether because my last big relapse came after I stopped

taking it once before. I think I am secondary progressive now. Apologies

to those who don't even have MS, for my jargon and MS-centredness.

See you can infer a lot of things from anecdotes (not antidotes!). I infer

that

maybe I can't stop taking interferon, and there has been no drug trial to

prove

*that*.

As long as the scientists stay away because there is no funding, we will

stay

in the shadows of partial or wrong information. For instance, did you know

that the medical term for what D. Lawrence calls " accommodation " (at least

in

this country) is tachyphylaxis, and it's why you can become " immune " to

poisons

(Rasputin was reputed to be immune to them). I don't believe this is a

problem

for many LDN users but it may be what is happening to those failures I

*have*

seen information about on this list (Sally?).

-Sullivan

_________________________________________________________________

STOP MORE SPAM with the new MSN 8 and get 2 months FREE*

http://join.msn.com/?page=features/junkmail

[Guest guest]

YES DAVID AND IT DOES!!! ~SALLY

--- In low dose naltrexone , " " <davizona@c...>

wrote:

> great questions. If accomodation (tachyphylaxis) does

happen

> with poisons, or LDN, could it also happen with the interferons?

[Guest guest]

Question for our MSers. Since my wife's diagnosis, we have both been regular and generous contributors to the National MS Society. Considering all the written stuff we get from them, the direction of most of the MS research (big pharma looking for more big money drugs that may or may not help the patient but will increase the bottom line), and the damage that two of the CRABs have already done to her, when I got my bi-monthly NMSS pledge request today in the mail, I just filed it away. I'm wondering if there isn't a better place to put our money. I don't feel the usual good feeling I used to have when I sent in a check. Maybe it's just me, but instead of feeling like this organization is "us," I'm feeling more and more like it's "them." So I'm asking, do I have a problem here, or is there a better place for our MS-intended contributions? Thanks! -Al "If you don't stand for something, you'll fall for anything."From: Sally [mailto: salpal@...]low dose naltrexone Date: Tue, 19 Aug 2003 00:14:13 -0000Subject: [low dose naltrexone] Re: variousYES DAVID AND IT DOES!!! ~SALLY> great questions. If accomodation (tachyphylaxis) does happen > with poisons, or LDN, could it also happen with the interferons?

[Guest guest]

Hi ,

It is true, that the nmss had. until recently, ever recommended any

drug to msers. They must have been offered a big bonus for

recommending the crab drugs.

I used to contribute as well, but not any more. With the big money

that they must receive from the drug companies, they don't need my

little pittence. If the best they can do for us is more of those

horrible immune suppressant horrors, then they are not using my

money, with my best interest at heart.

My best to you and your wife.

~Sally

" Allan Eisel " wrote:

> Question for our MSers. Since my wife's diagnosis, we have both

been regular and generous contributors to the National MS Society.

Considering all the written stuff we get from them, the direction of

most of the MS research (big pharma looking for more big money drugs

that may or may not help the patient but will increase the bottom

line), and the damage that two of the CRABs have already done to

her, when I got my bi-monthly NMSS pledge request today in the mail,

I just filed it away. I'm wondering if there isn't a better place

to put our money. I don't feel the usual good feeling I used to

have when I sent in a check. Maybe it's just me, but instead of

feeling like this organization is " us, " I'm feeling more and more

like it's " them. " So I'm asking, do I have a problem here, or is

there a better place for our MS-intended contributions? Thanks! -

Al " If you don't stand for something, you'll fall for anything. " ---

On Mon 08/18, Sally & lt; salpal@d... & gt; wrote:From: Sally [mailto:

salpal@d...]low dose naltrexone@y...: Tue, 19 Aug 2003 00:14:13 -

0000Subject: [low dose naltrexone] Re: variousYES DAVID AND IT DOES!!!

~SALLY & gt;

great questions. If accomodation (tachyphylaxis) does happen

& gt; with poisons, or LDN, could it also happen with the

interferons> _______________________________________________

[Guest guest]

Mira, try bostoncure.org.

[Guest guest]

Tonight I'm staying at an extremely high-end, super-luxurious resort hotel (only because of my husband's work, which requires that he be here this weekend.) I called room service, which assured me that they deal with all sorts of dietary requirements and that they certainly could take care of mine. The room service clerk said she would shepherd my meal through, personally.

I ordered, still feeling unsure somehow. My meal came to my room with a big basket of beautiful wheat breads and house-made crackers on it. Well, it happens.

I called back later to consult on what I could order for breakfast tomorrow. I asked about huevos rancheros. I know what goes into huevos rancheros, but I wanted to make sure they didn't have some aberrant addition.) Oh, no, you can't eat that! Why not! They're made with tortillas! Turns out that this "expert", even after my defining celiac disease and its requirements to her, thought corn was forbidden for CD. She meant well, but . . . She got the package from the kitchen for me; it contained only the usual non-gluten corn tortilla ingredients. As politely as possible, I've tried to urge her to read up on the requirements for this relatively common disorder.

Earlier this week I had a waiter at a nationally-famous restaurant who believed he knew all about CD but who thought potatoes in any form were harmful for us.

Both these people truly were making an effort, but it was hard for them.

H.**************Looking for simple solutions to your real-life financial challenges? Check out WalletPop for the latest news and information, tips and calculators. (http://www.walletpop.com/?NCID=emlcntuswall00000001)