Re: Re: LDN and ALS

[Guest guest]

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.

Parli Lynn wrote:

I think C also.

Edith <edith@...> wrote:

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

[Guest guest]

Oops! Thanks for that Edith, but unfortunately it turns out I wasn't

explicit enough in what I said and I guess you missed the map that's

usually at the bottom of all my postings - the Melbourne I live near is

the one in Australia. I did today however track down a compounding

chemist about 1/3 of the way out from Melbourne, so a bit better, and

he said there were none between him and where I live. I faxed him my

prescription and it will be ready for me to pick up tomorrow lunchtime,

so tomorrow night will hopefully be the start of something good for my

PLS! :-)

I am lucky that my GP is so open to trying different things. She has

sometimes suggested different things to try and in the 10 years I have

been seeing her since my PLS diagnosis she has come to learn that if I

ask to try something I have done all my homework and researched it

thoroughly so is willing to let me try it out (I have only done that

once, maybe twice before in 10 years so she knows I am not running

around trying different things willy nilly). I printed off quite a few

pages from the low dose naltrexone website and typed up a one page

summary with my reasons for wanting to try it. As I thought would

probably happen she read my summary and wrote me the script then and

there without more than a glance at all the website info I had printed

off. She took that home with her to read and I have no doubt that

being as open minded as she is, that will have her suggesting LDN to

some of her other patients.

Good luck with the muscle biopsy results - hope it is just PLS and not

ALS.

Edith wrote:

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