Re: MS drugs

[Guest guest]

Is there any drug prescribed for MS that IS OK? I sincerely doubt it.

Janet

To: mscured

From: alpdesigns1@...

I think that ALL Ms'ers should refrain from taking Avonex! One of their listed

side effects is liver damage. It's bad enough to have ms and having liver damage

as well is too much!

One of the requirements for patenting a drug is that the ingredients can't be

found in nature. That is a huge red flag! Good decision .

>

>

> Hi

> I was on Avonex for about a year and a half before stopping it and starting on

the BBD.

> Studies in the US have shown that certain 'MS'ers shouldn't be on Avonex and

that it can cause more frequent or severe exacerbations

[Guest guest]

Some will argue that LDN is good. It didn't work for me.

> >

> >

> > Hi

> > I was on Avonex for about a year and a half before stopping it and starting

on the BBD.

> > Studies in the US have shown that certain 'MS'ers shouldn't be on Avonex and

that it can cause more frequent or severe exacerbations

>

>

[Guest guest]

LDN didn't work for me either. I had high hopes, and tried it for a whole year.

After awhile I did seem to be sleeping better, but I also started getting stiff

legs during that time. And no improvement whatsoever of any MS symptoms. I've

encountered lots of other people who weren't helped by it.

As to liver problems, Rebif is also noted for liver side effects. Probably the

other CRAB drugs as well.

>

> Some will argue that LDN is good. It didn't work for me.

>

[Guest guest]

I have to say that while LDN didn't help me walk or hold my 'toilet water' (what

word does one 'politely' use?), it has helped (and still does) take away the

searing pain that I was experiencing prior to taking it.

I've always had stiff legs and so didn't notice that get worse, but I don't

think it has affected me that way.

I will always recommend it as I think, if it can help someone someway, then it's

worth it. I hadn't expected much from it prior to taking it, but always felt

that IF I got anything out of it, then it would be worth trying and sticking to.

'What we do in life, echoes through eternity.'

MARCUS AURELIUS (121 - 180 A.D.)

To: mscured

From: alimrobb@...

Date: Wed, 29 Dec 2010 19:34:08 +0000

Subject: Re: MS drugs

LDN didn't work for me either. I had high hopes, and tried it for a whole year.

[Guest guest]

I have to say that while LDN didn't help me walk or hold my 'toilet water' (what

word does one 'politely' use?), it has helped (and still does) take away the

searing pain that I was experiencing prior to taking it.

I've always had stiff legs and so didn't notice that get worse, but I don't

think it has affected me that way.

I will always recommend it as I think, if it can help someone someway, then it's

worth it. I hadn't expected much from it prior to taking it, but always felt

that IF I got anything out of it, then it would be worth trying and sticking to.

'What we do in life, echoes through eternity.'

MARCUS AURELIUS (121 - 180 A.D.)

To: mscured

From: alimrobb@...

Date: Wed, 29 Dec 2010 19:34:08 +0000

Subject: Re: MS drugs

LDN didn't work for me either. I had high hopes, and tried it for a whole year.

[Guest guest]

It didn't address my symptoms and it caused stiffness in my legs as well. I

didn't have any exacerbations though. I haven't had any since I quit taking it

either but I have secondary progressive MS and I didn't have obvious

exacerbations when I have gotten worse in the past. I think everyone ought to

try it if only to cross it off the 'to do' list.

>

> LDN didn't work for me either. I had high hopes, and tried it for a whole

year.

[Guest guest]

It didn't address my symptoms and it caused stiffness in my legs as well. I

didn't have any exacerbations though. I haven't had any since I quit taking it

either but I have secondary progressive MS and I didn't have obvious

exacerbations when I have gotten worse in the past. I think everyone ought to

try it if only to cross it off the 'to do' list.

>

> LDN didn't work for me either. I had high hopes, and tried it for a whole

year.

[Guest guest]

Good thread !!

LDN was my " escape " from the CRAB drugs !! Even if the LDN did NOTHING, it was

better then Rebif!

Felt the Rebif actually did harm. Was even able to measure w/ my GPS and a week

long break from the drug, that it was doing harm.

Even did a search / interview of a dozen of so WAY early members of the Yahoo

LDN board. Ended up getting about 33 % of the early timers that responded were

still taking the LDN. If we search the LDN board, it is possible to find

instances of people reporting it didn't work for them. Typically a post like

that is a single post. Why stay and keep posting on the LDN board if it did not

work? If we review the board, the majority of posts are people that are first

taking the LDN.

When I posted my data on the Patients Like Me (PLM) MS board, it was amazing how

many people threw " flames " at me ! Didn't apologize. Just brought up more

links to posts where it didn't work.

My early Lyme-contact that connected me w/ my first LLMD is taking LDN. She

brags how it gives her the strength to stand longer. Based on her review, I

restarted my LDN. So far, don't think it is helping me with my

neuro-borreliosis (aka Lyme disease) either.

to review:

my neurologist #1, a MS clinical trial physician, had about a dozen patients

that tried LDN. He told me, " it wasn't a good experience for anybody " . My

alternative physician who prescribed the LDN, reported that he felt if didn't

help any of his patients either.

Now I've been on LDN TWICE. Carefully followed the 1.5 mg/day start up, the 3.0

mg/day for a month, not 4.5 mg/day. Still not convinced it is of any benefit.

Mileage may vary

> >

> > LDN didn't work for me either. I had high hopes, and tried it for a whole

year.

>