Re: So much conflicting info

[Guest guest]

Leo,

Have you considered copaxone instead of betaseron?You would still get the benefits of the crab drugs w/o interfering with the LDN. It's a compromise, and you can get the best of both worlds!

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

From: low dose naltrexone

Date: Tuesday, June 15, 2004 19:12:09

low dose naltrexone

Subject: [low dose naltrexone] So much conflicting info

What is one to do? Stop taking Betaseron if you start LDN, take both,

or just take an interferon?

I realize that drug companies must promote the ABCR meds more because

they have fincancial stakes in their outcomes, but who can we really

believe? Is LDN truly superior to the clinical trials the ABCR meds

have been blessed enough to get? Will clinical trials for LDN ever

ensue?

I am at the crossroads right now. I've been on Betaseron for about 8

years now. I've done reasonably well with it, but I still have some

symptoms that I find intolerable. As such, I started LDN a few days

ago in an effort to end those intolerable symptoms. I am now taking

both Betaseron and 4.5mg LDN.

I've considered just taking the LDN, but one of my doctors has

advised me not to abandon the Beta because I've done reasonbly well

with it.

I guess I will just keep taking both Betaseron and 4.5mg Liquid LDN

for now. Any advice/experiences out there?

Leo from Southern California, USA

[Guest guest]

> What is one to do? Stop taking Betaseron if you start LDN, take both,

> or just take an interferon?

>

> I realize that drug companies must promote the ABCR meds more because

> they have fincancial stakes in their outcomes, but who can we really

> believe? Is LDN truly superior to the clinical trials the ABCR meds

> have been blessed enough to get? Will clinical trials for LDN ever

> ensue?

>

> I am at the crossroads right now. I've been on Betaseron for about 8

> years now. I've done reasonably well with it, but I still have some

> symptoms that I find intolerable. As such, I started LDN a few days

> ago in an effort to end those intolerable symptoms. I am now taking

> both Betaseron and 4.5mg LDN.

>

> I've considered just taking the LDN, but one of my doctors has

> advised me not to abandon the Beta because I've done reasonbly well

> with it.

>

> I guess I will just keep taking both Betaseron and 4.5mg Liquid LDN

> for now. Any advice/experiences out there?

>

> Leo from Southern California, USA

===========

It is just fine to take LDN and an interferon together " BUT " if you have an

exacerbation while taking an interferon with LDN, which they severly

conflict/battle one another, you cannot claim that LDN didn't stop your

progression. LDN gets knocked down by interferons and that combo leaves you

vulnerable to possible progression, where as LDN alone can upregulate your

immune system back towards normal to fight disease like it was designed to do.

The only people who can claim LDN didn't halt their progression of MS are the

ones who do not take Betaseron, Avonex, Rebif, Novantrone or other chemo and

immune suppressing drugs like lots of steroids.

[Guest guest]

> What is one to do? Stop taking Betaseron if you start LDN, take

both,

> or just take an interferon?

You are summing up how many of us seem to feel. There is simply no

easy answer.

I was dx this feb and been on LDN for 80 plus days.

It was an easier choice for me. After reading about the CRAB drugs

and reading posts from those using them, and looking at some of

their clinical studies, I decided my chances were better from a

quality of life perspective using LDN. Had I been on a CRAB first,

it would have been a tough choice, as fear of change and going

against main stream pressure is tough. LDN was not a financial

choice for me, but one I came to after coming to the conclusion that

MS is probably a catchall for several diseases or conditions. There

have been several posts by several people talking about this. I

think it is why some of us react differently to both the " disease "

and the treatments.

I am comfortable with my choice for now, and for me. If I feel like

I am slipping I would consider copaxone as a first choice. Again

based on what I read and my belief that LDN makes as much or more

sense as anything else. I guess the answer to your question is that

you need to do whatever seems right to you and for you. I don't

believe anyone here, or any doctor can tell you definitively, it

just isn't that easy. Perhaps one day soon someone will figure out

what really happens to cause MS and why, until then the only one

making choices for me is me.

All I want from the medical community (doctors and pharmas) is to be

given all the choices and access to all info (anecdotal or not) so

that I can make an informed decision. Having to depend on luck to

stumble across LDN seems plain wrong.

Don't know if that helps you, but accepting control of and

responsibilit for my health and wellness has made things much

easier, and clearer for me.

Best

Alan

[Guest guest]

Hi -

I have considered Copaxone. But, I am doing fairly well on the Beta

and there's that one recent study suggesting that the Copax doesn't

even really help? That along with the daily injection doesn't make

changing to Copax from Beta just for the LDN too exciting. But I

might still consider it.

--- In low dose naltrexone , " " <cindyyoung@a...>

wrote:

> Leo,

> Have you considered copaxone instead of betaseron?You would still

get the

> benefits of the crab drugs w/o interfering with the LDN. It's a

compromise

> and you can get the best of both worlds!

>

[Guest guest]

Thank you, ! Something to think about. Now I must wonder if

it's even worth it for me to deviate away from something that was

working reasonably well for me in an effort to find whether something

new will work better.

Leo

--- In low dose naltrexone , " Bren " <TwisterAlley2@w...>

wrote:

>

> It is just fine to take LDN and an interferon together " BUT " if you

have an exacerbation while taking an interferon with LDN, which they

severly conflict/battle one another, you cannot claim that LDN didn't

stop your progression. LDN gets knocked down by interferons and that

combo leaves you vulnerable to possible progression, where as LDN

alone can upregulate your immune system back towards normal to fight

disease like it was designed to do.

>

> The only people who can claim LDN didn't halt their progression of

MS are the ones who do not take Betaseron, Avonex, Rebif, Novantrone

or other chemo and immune suppressing drugs like lots of steroids.

>

>

[Guest guest]

my two cents time,

I understand that LDN works with Copaxone, but not the other CRABs.

I have not see a negative study on Copaxone, only positive ones. Well I suppose it depends on which side of the table you are sitting on and you need to ask which one REALLY does help?

I am on Copaxone and just waiting to start the LDN. My experience with Copaxone has been good, though I have still have had 1 exacerbation per year requiring steroids in 4 years on it, but once I get started on LDN and happy with it, after 3 months (recommended), I will let the Copaxone slide away (YEA now more daily injection . . . hopefully)

Yes my hopes are high, they are so hard to suppress.

Xgraf

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

From: leosab@...

low dose naltrexone

Sent: Wednesday, June 16, 2004 6:53 AM

Subject: [low dose naltrexone] Re: So much conflicting info

Hi -I have considered Copaxone. But, I am doing fairly well on the Beta and there's that one recent study suggesting that the Copax doesn't even really help? That along with the daily injection doesn't make changing to Copax from Beta just for the LDN too exciting. But I might still consider it.> Leo,> Have you considered copaxone instead of betaseron?You would still get the> benefits of the crab drugs w/o interfering with the LDN. It's a compromise> and you can get the best of both worlds!>

[Guest guest]

Thank you for your thoughts, Alan! Best wishes in your fight against

this MonSter!

I would also go Copaxone had I not had that much success with

Betaseron, but I feel that the Beta has been fairly good for me. It

just hasn't been perfect. I still suffer some urinary dysfunctions

that I was hoping switching to (or adding?) LDN might rectify.

Still searching...

Leo

--- In low dose naltrexone , " alanms1579 " <alanms@c...>

wrote:

> You are summing up how many of us seem to feel. There is simply no

> easy answer.

>

>

[Guest guest]

Leo,

You will never know whether or not the Betaseron has had anything to with you doing reasonably well. Chances are, and this is my opinion, you would have progressed at the same rate without any of the CRAB drugs. 'They' hope that the CRABs help to slow progression, but they truly don't know. Their scientific studies lead them to believe that their drugs 'might' help this in a small number of people. There just wasn't enough proof to convince me. I tried Avonex for two years and ended up in this wheelchair anyway. And soon!! I might have believed that it helped in some way if my progression had slowed to the point of giving me 10 - 15 more good years, but it didn't. And trust me, two years or thirty wouldn't/couldn't prepare an active social person for the changes that were to come.

You just do what you are comfortable with.

Marcie (PPMS)

In a message dated 6/15/2004 6:13:01 PM Central Standard Time, leosab@... writes:

Subj:[low dose naltrexone] So much conflicting info

Date:6/15/2004 6:13:01 PM Central Standard Time

From: leosab@...

Reply-to: low dose naltrexone

low dose naltrexone

What is one to do? Stop taking Betaseron if you start LDN, take both, or just take an interferon?

I realize that drug companies must promote the ABCR meds more because they have fincancial stakes in their outcomes, but who can we really believe? Is LDN truly superior to the clinical trials the ABCR meds have been blessed enough to get? Will clinical trials for LDN ever ensue?

I am at the crossroads right now. I've been on Betaseron for about 8 years now. I've done reasonably well with it, but I still have some symptoms that I find intolerable. As such, I started LDN a few days ago in an effort to end those intolerable symptoms. I am now taking both Betaseron and 4.5mg LDN.

I've considered just taking the LDN, but one of my doctors has advised me not to abandon the Beta because I've done reasonbly well with it.

I guess I will just keep taking both Betaseron and 4.5mg Liquid LDN for now. Any advice/experiences out there?

Leo from Southern California, USA

[Guest guest]

> > You are summing up how many of us seem to feel. There is simply no

> > easy answer.

> >

> >

=================

Leo,

You can still get symptom improvement with LDN while still on Beta. It's just

that LDN may not be able to hold up against the Beta. Betaseron can allow

exacerbations of new, never had before symptoms to happen. With LDN alone, new

symptoms after about 6 to 9 months use should not occur and if they do occur,

compounding, pro-longed or very hot heat exposure, fevers, infections and undue

stress, over-taxing the body are the first things to be examined.

You do not have to give up the LDN just because you're on Beta. The LDN is not

going to cause the Beta to not work properly, it's Beta that can cause LDN to

malfunction.

I think the next survey needs to include whether one is using an interferon

along with their LDN and that should give us a better indication of who is

relapsing on LDN; the people on LDN alone, Copaxone and LDN or the people on LDN

and interferons or chemo. A truer picture needs to be drawn with the next LDN

survey. Also, questions like where the LDN was obtained and filler used if not

liquid LDN(script by doctor, pharmacy bought from, obtained without script and

from what country, if one mixes their own LDN, etc...).

[Guest guest]

Leo - I take Copaxone with LDN and probably will continue both until I feel comfortable enough to stop. As long as my insurance pays, I will continue to take both. Kim, PA

[Guest guest]

Xgraf - I've been on Copaxone for 6 yrs. no side effects and no relapses, been on LDN for about 6 weeks. Improvement in bladder control without my Detrol so will continue both with hopes of seeing continued improvements. Good luck, Kim, USA, PA

[Guest guest]

Dear Leo - I chose Copaxone because it had the least (I had none) side effects, and it was the newest crab out. Good luck with your choice and LDN. Kim

[Guest guest]

Hi Kim - Thanks for your comments. I'm considering switching to

Copaxone from Betaseron. I read on Dr. Bihari's web site that Copax

is the only current MS injectible med that doesn't conflict with LDN.

However, I also keep hearing things like, " If it's not broke, why fix

it? " And it's arguable whether Betaseeron is not working for me.

For now, I will continue taking the Betaseron along with my newly

added regimen of 4.5mg Liquid LDN.

Leo from California

> Leo - I take Copaxone with LDN and probably will continue both

until I feel

> comfortable enough to stop. As long as my insurance pays, I will

continue to

> take both. Kim, PA

[Guest guest]

Hi Leo -

I think that is a wise choice. You should continue with what you

are comfortable with because worrying too much about it causes

unwanted stress that can affect you also. I just quit Beta because

I absolutely despise the stuff. Still, in the back of my mind I

wonder though . . . .

Best of luck to you!

> Hi Kim - Thanks for your comments. I'm considering switching to

> Copaxone from Betaseron. I read on Dr. Bihari's web site that

Copax

> is the only current MS injectible med that doesn't conflict with

LDN.

> However, I also keep hearing things like, " If it's not broke, why

fix

> it? " And it's arguable whether Betaseeron is not working for me.

>

> For now, I will continue taking the Betaseron along with my newly

> added regimen of 4.5mg Liquid LDN.

>

> Leo from California

>

> --- In low dose naltrexone , REILLYMICHAELA17@C...

wrote:

> > Leo - I take Copaxone with LDN and probably will continue both

> until I feel

> > comfortable enough to stop. As long as my insurance pays, I will

> continue to

> > take both. Kim, PA