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Re: LDN and ALS

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I've read good things about Skip's Pharmacy, somewhere on the east

coast of Florida (maybe Boca Raton??). I called and spoke to Skip

and he was very helpful. His number is 1-800-553-7429, fax 561-218-

8873.

As soon as I get the results of my muscle biopsy in about a week,

I'll raise the issue of an Rx for LDN with my neuro. Skip doesn't

know anyone who takes it for ALS, but I did write to the LDN website

editor and this was his response:

" ALS is of unknown etiology and there had been some reports that

there might be an autoimmune mechanism at work in ALS. If so, LDN

acts to halt all autoimmune activity and would be worth trying. In

addition, there had been some early reports that there were

improvements in pulmonary function test results among a few people

with ALS. "

No miracles, but it can't hurt to try.

Edith

> >

> > I did post on the living with als site, but haven't had any

replies

> > yet. Yours was the only one. I also think Gomez (is that

> > Yolanda?) is planning to take it for PLS.

> > Edith

> >

>

> --

> .

> ,-._|\ Covington

> / Oz \

> \_,--.x/

> v

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Melbourne, Australia! A bit far from Florida, but I'm happy to say

my husband and I visited Melbourne about 5 years ago when we took a

5-week trip to New Zealand and Australia. We were entranced by the

fairy penguins, and enjoyed walking around the city with people we

met through a worldwide organization that exchanged visits to each

other's homes. So glad we made the trip when we had the physical

ability to do so.

I hope my neuro is as open-minded as yours. I only met him twice,

once for the original consult and the second time was for the emg

tests. I mentioned LDN to him and he knew nothing about it. I'll

wait for the results of my tests before raising the topic again.

Please keep me posted on how the LDN is working for you. AFter all,

PLS is a variant of ALS, so if it works for you, it may help me too.

Edith

>

> > I've read good things about Skip's Pharmacy, somewhere on the

east

> > coast of Florida (maybe Boca Raton??). I called and spoke to Skip

> > and he was very helpful. His number is 1-800-553-7429, fax 561-

218-

> > 8873.

> >

> > As soon as I get the results of my muscle biopsy in about a week,

> > I'll raise the issue of an Rx for LDN with my neuro. Skip doesn't

> > know anyone who takes it for ALS, but I did write to the LDN

website

> > editor and this was his response:

> >

> > " ALS is of unknown etiology and there had been some reports that

> > there might be an autoimmune mechanism at work in ALS. If so, LDN

> > acts to halt all autoimmune activity and would be worth trying.

In

> > addition, there had been some early reports that there were

> > improvements in pulmonary function test results among a few

people

> > with ALS. "

> >

> > No miracles, but it can't hurt to try.

> > Edith

> >

> >

> > --- In low dose naltrexone , C <covo@m...>

wrote:

> > > Yep, got my script today - as I thought my GP was very

supportive

> > of my

> > > decision to use it even though she hadn't heard of it before.

Now

> > all I

> > > have to do is try to track down a local compounding chemist.

> > Closest

> > > I've found so far is 25 miles away in Melbourne.

> >

>

> --

> .

> ,-._|\ Covington

> / Oz \

> \_,--.x/

> v

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