Re: LDN Success for ALS (#2)

[Guest guest]

I'm so happy that LDN is working for you. I tried it twice, for 3-4

months each time, and got no change. I was disappointed, but I guess

it works for some and not for others. Good luck.

Edith

> From Ozpals recently (Oz = Australia, PALS = people with ALS),

similar

> Yahoo group to this one. Originally titled: [ozpals] LDN - yet

another

> convert].

>

>

>

>

>

> Just a quick update on Chris's first 6 weeks of 3.0 mg LDN. 2 weeks

> of increased stiffness around joints and some sleeplessness.

Several

> days nausea from using a codeine based cold and flu tab. Wont do

> that again.

> Anyway, after 2 weeks,stiffness gone, fingers on left hand no

longer

> clawing up and can now hold things and operate the TV remote

control

> (dammit!). Left foot drop still the same but leg working better and

> less effort to move it. Swallowing no problem, definite improvement

> in voice in the morning but gets tired and slurred again by mid

> afternoon. More inclined to moving around now with stick and frame.

> Sleeping better and less tired in morning. Hasnt used pressure

> stockings in over a month and zero foot swelling. And it is hot up

> here in Cairns.

> Tomorrow we commence 4.5 mg. We know its not a cure but we're

> certainly happy with the results. Placebo or not? Dont really care,

> we're on this bus for the destination, not the journey. Maybe its

> the Rilutek (that has had no measurable or noticable effect since

> commencing this $10,000 a year drug a year ago)

> As for any Ivory Tower occupants, well, THEY still cant test for

> MND, THEY still dont know what causes it, THEY still have no

> realistic treatment for it, and from what I gather, have never done

> any clinical trials of note with LDN ( I could be wrong on this

> one). So its in our lap. Having pooh poohed (sorry ) LDN,I

> think it would be unrealistic to expect Neuros to back flip and

> begin prescribing it. They didnt find it so its not gonna work.

> After a year caring for and thinking my career was over, we

> are both confident I can begin working a week per month for my

> previous employer. Friends have remarked on Chris's general

> improvement in well being.

> So thats where we're at, maybe more improvements for the future,

> maybe not, but we're anxious to see.

> If your wondering about LDN, I reckon give it a go. As I say,

> there's no answers to be had, you're gonna have to find your own.

> Keeping hope alive

>

> Robbie and

>

>

>

> --

> .

> ,-._|\ Covington

> / Oz \

> \_,--.x/

> v

[Guest guest]

Hi Edith,

Sorry, didn't mean to give you a guilt trip. Given that you have

already tried twice for a while and obviously had no improvements then

if your symptoms aren't progressing then there is probably no real need

to try again yet. However, if your symptoms are progressing it is

certainly worth going back onto it and giving it 9 months or so to see

if it slows or even stops your progression as that is the main aim.

Edith wrote:

>

> Maybe I'll try again. It's certainly inexpensive and can't hurt.

> Edith

--

.

,-._|\ Covington

/ Oz \

\_,--.x/

v

[Guest guest]

Hi Edith,

Sorry, didn't mean to give you a guilt trip. Given that you have

already tried twice for a while and obviously had no improvements then

if your symptoms aren't progressing then there is probably no real need

to try again yet. However, if your symptoms are progressing it is

certainly worth going back onto it and giving it 9 months or so to see

if it slows or even stops your progression as that is the main aim.

Edith wrote:

>

> Maybe I'll try again. It's certainly inexpensive and can't hurt.

> Edith

--

.

,-._|\ Covington

/ Oz \

\_,--.x/

v

[Guest guest]

Hi Edith,

Sorry, didn't mean to give you a guilt trip. Given that you have

already tried twice for a while and obviously had no improvements then

if your symptoms aren't progressing then there is probably no real need

to try again yet. However, if your symptoms are progressing it is

certainly worth going back onto it and giving it 9 months or so to see

if it slows or even stops your progression as that is the main aim.

Edith wrote:

>

> Maybe I'll try again. It's certainly inexpensive and can't hurt.

> Edith

--

.

,-._|\ Covington

/ Oz \

\_,--.x/

v

[Guest guest]

I order from Skip's pharmacy in Florida. I think I will try again.

Edith

>

> >

> > Maybe I'll try again. It's certainly inexpensive and can't hurt.

> > Edith

>

>

> --

> .

> ,-._|\ Covington

> / Oz \

> \_,--.x/

> v

[Guest guest]

I order from Skip's pharmacy in Florida. I think I will try again.

Edith

>

> >

> > Maybe I'll try again. It's certainly inexpensive and can't hurt.

> > Edith

>

>

> --

> .

> ,-._|\ Covington

> / Oz \

> \_,--.x/

> v

[Guest guest]

I order from Skip's pharmacy in Florida. I think I will try again.

Edith

>

> >

> > Maybe I'll try again. It's certainly inexpensive and can't hurt.

> > Edith

>

>

> --

> .

> ,-._|\ Covington

> / Oz \

> \_,--.x/

> v

[Guest guest]

Hi Edith,

I'm going to speak to my neuro about putting me on LDN. Can you send me

info on Skip's Pharmacy in Florida, dosages,Dr.Bihari or LDN website?

pinkflamingo984@... Thanks, Jeannie

Re: LDN Success for ALS (#2)

>

>

> I order from Skip's pharmacy in Florida. I think I will try again.

> Edith

>

>

> >

> > >

> > > Maybe I'll try again. It's certainly inexpensive and can't hurt.

> > > Edith

> >

> >

> > --

> > .

> > ,-._|\ Covington

> > / Oz \

> > \_,--.x/

> > v

>

>

>

>

>

>

>

>

[Guest guest]

Hi Edith,

I'm going to speak to my neuro about putting me on LDN. Can you send me

info on Skip's Pharmacy in Florida, dosages,Dr.Bihari or LDN website?

pinkflamingo984@... Thanks, Jeannie

Re: LDN Success for ALS (#2)

>

>

> I order from Skip's pharmacy in Florida. I think I will try again.

> Edith

>

>

> >

> > >

> > > Maybe I'll try again. It's certainly inexpensive and can't hurt.

> > > Edith

> >

> >

> > --

> > .

> > ,-._|\ Covington

> > / Oz \

> > \_,--.x/

> > v

>

>

>

>

>

>

>

>

[Guest guest]

Hi Edith,

I'm going to speak to my neuro about putting me on LDN. Can you send me

info on Skip's Pharmacy in Florida, dosages,Dr.Bihari or LDN website?

pinkflamingo984@... Thanks, Jeannie

Re: LDN Success for ALS (#2)

>

>

> I order from Skip's pharmacy in Florida. I think I will try again.

> Edith

>

>

> >

> > >

> > > Maybe I'll try again. It's certainly inexpensive and can't hurt.

> > > Edith

> >

> >

> > --

> > .

> > ,-._|\ Covington

> > / Oz \

> > \_,--.x/

> > v

>

>

>

>

>

>

>

>