Re: [LDN] Been quiet too long

[Guest guest]

Friends,

DXed in Dec, 03 Neuro will not say what kind of MS

LDN since Feb 1, 04 4.5 mg

Got wonderful results at first.

I am certain that My Neuro will label me PPMS in July when I see him next, It marches along slowly, not going to stop the LDN, the PHL or the benfo My Old symptoms have returned and lesser but right here in my face.

I do OT and PT Aqua therapy to try to rebuild the muscles in atrophied.

As for activism I have done what I can, got my Neuro convinced, now all his MSers are now on LDN. I am proud of that believe I helped others

I wrote the letters, to Ophrah's show ideas site, to Montel society and show ideas and even Montel. to NMS Society to My local chapter.

Why am I not doing even more? Not calling national radio and TV stations? Well, frankly I am sick damn it, a good day I can catch up on my house.

I still have the little attacks that kick My ass, I deal with the numbness that is back, what I call the Heebie Jeebies in my skin and muscle spasms, lots of the MS pain is back. I am back on my cane often. Cuz I fall, do the wall crawl and pin ball off things. I am glad to still be standing,

I do take narcs, when necessary (loratabs/vicodene is My friend) as I believe LND at this dose only makes them 10% less effective and it works. These drugs do NOT prevent the endorphin rush I need from LDN.

I haven't written on here cuz I don't want people to think I don't believe in this drug. I sit quiet when y'alll make blanket statements like it halts progression, well it didn't mine. But they would have to pry it from my hand for sure, it helps me.

I do not believe that any of our energy is wasted, anytime we tell anyone what LDN is an how it helps, it is a tiny step forward. We all do what we can when we can.

As far as complaining people, well we are sick, with a terrible disease and we live in fear of what will happen to us next. Perhaps like me, you know a person actively dying an awful death from MS. In short (too late:) we have a right to complain now and again. We need a safe place for that with folks who "get it"

So no Bitching about bitching from me.

There was a pop song that came out when I was first DXed

it's chorus says it all for me:

"I will go down with this ship

I will not raise my hands up in surrender

there will be no white flag above my door

I'm in love and I always will be."

I stay as well as I can, I am happy and in love, so I think I am lucky!

May you all find peace and love.

ZilNever give up, never surrender

Zillba@...

[Guest guest]

Zillba:

Am sorry to hear that you have not done too well. But it is

important for you to speak out, for in the absence of a clinical

trial how will we know if LDN works or not.

Aegis thinks that Dr.Bihari's claim that LDN stops progression in 98

% of cases is too optimistic. This can also be disputed from

redtruck's survey. Earlier today, I read someone else post that it

was not working for that person.

Aegis would be happy if it worked in 70 % of individuals. Perhaps it

works in a certain type of MS, these are all questions that need a

trial.

> Friends,

> DXed in Dec, 03 Neuro will not say what kind of MS

> LDN since Feb 1, 04 4.5 mg

> Got wonderful results at first.

> I am certain that My Neuro will label me PPMS in July when I see

him next, It

> marches along slowly, not going to stop the LDN, the PHL or the

benfo My Old

> symptoms have returned and lesser but right here in my face.

> I do OT and PT Aqua therapy to try to rebuild the muscles in

atrophied.

>

> As for activism I have done what I can, got my Neuro convinced, now

all his

> MSers are now on LDN. I am proud of that believe I helped others

>

> I wrote the letters, to Ophrah's show ideas site, to Montel

society

> and show ideas and even Montel. to NMS Society to My local chapter.

> Why am I not doing even more? Not calling national radio and TV

stations?

> Well, frankly I am sick damn it, a good day I can catch up on my

house.

>

> I still have the little attacks that kick My ass, I deal with the

numbness

> that is back, what I call the Heebie Jeebies in my skin and muscle

spasms, lots

> of the MS pain is back. I am back on my cane often. Cuz I fall, do

the wall

> crawl and pin ball off things. I am glad to still be standing,

>

> I do take narcs, when necessary (loratabs/vicodene is My friend) as

I believe

> LND at this dose only makes them 10% less effective and it works.

These drugs

> do NOT prevent the endorphin rush I need from LDN.

>

> I haven't written on here cuz I don't want people to think I don't

believe in

> this drug. I sit quiet when y'alll make blanket statements like it

halts

> progression, well it didn't mine. But they would have to pry it

from my hand for

> sure, it helps me.

>

>

> I do not believe that any of our energy is wasted, anytime we tell

anyone

> what LDN is an how it helps, it is a tiny step forward. We all do

what we can

> when we can.

> As far as complaining people, well we are sick, with a terrible

disease and

> we live in fear of what will happen to us next. Perhaps like me,

you know a

> person actively dying an awful death from MS. In short (too late:)

we have a

> right to complain now and again. We need a safe place for that with

folks who

> " get it "

> So no Bitching about bitching from me.

>

> There was a pop song that came out when I was first DXed

> it's chorus says it all for me:

>

> " I will go down with this ship

> I will not raise my hands up in surrender

> there will be no white flag above my door

> I'm in love and I always will be. "

>

> I stay as well as I can, I am happy and in love, so I think I am

lucky!

>

>

> May you all find peace and love.

> Zil

> Never give up, never surrender

> Zillba@a...