Re: Low Dose Naltrexone LDN

[Guest guest]

>I have been on LDN for over a year now helps with leg spasms at nite

and also helps sleeping, I take one 4.5 mg tablet before bedtime.JOHN

B.

> Some one in the group has tried LDN ,can't remember who

> If so how did it work? Ive read some good things on it

> GEO

>

[Guest guest]

Thanks ,other than Leg Spasms does it help with anything else ? I

will ask my doc to see if he will script it GEO

>

>

> >I have been on LDN for over a year now helps with leg spasms at

nite

> and also helps sleeping, I take one 4.5 mg tablet before

bedtime.JOHN

> B.

> > Some one in the group has tried LDN ,can't remember who

> > If so how did it work? Ive read some good things on it

> > GEO

> >

>

[Guest guest]

I've been on 4.5 mg of LDN for almost 2 years. I feel it has definitely slowed

my progression. I only say that because I was progressing very quickly when I

first started having symptoms. I think most of my problems with getting worse,

is that I don't exercise or work out at all anymore (partly because I'm getting

lazy). So my balance is not as good as it was. I do have more energy than

before LDN. I still work a 9-10 hr day with a cane and minimal walking. I also

take 80 mg Baclefen/day, 1 mg klonopin at bedtime for help with sleep and it

also helps with my burning mouth syndrome and some burning that I get on parts

of my body, LDN after 9 pm. Some PLSers have tried it with no luck, but it's

worth a try. I order mine from Skip's Pharmacy in FL. I get a 3 month supply

of 4.5 mg pills for about 60.00. I fax my prescription in, and call to make

sure it got there. I've talked to Skip and asked all kinds of questions. His

phone and fax numbers are on the www.ldninfo.org

website.

Parli

Geo wrote:

Some one in the group has tried LDN ,can't remember who

If so how did it work? Ive read some good things on it

GEO

[Guest guest]

I am one who is taking it and have been for over 18 months, as has

Parli. In my case my initial rapid decline had already been basically

halted for over 5 years (I believe through antioxidants) when I started

on LDN and I was one of the lucky ones who actually found some symptom

improvement i.e. my walking and other functionality all took a small but

noticeable improvement.

Apologies for the length of the rest but I have tried to give people the

benefit of what I have learned about LDN since early 2004. If you are

not interested in LDN but are still with us to here you can hit the

Delete key now as the rest is all about LDN.

Comments from two people I know with ALS who are using it:

a) " LDN wise I feel no change over the last 12 months " - this guy has

had a relatively slowly progressing form of ALS for 10 years or so,

though is now very disabled. Even so he is rapt that since starting LDN

about a year ago he doesn't feel he has progressed at all.

" I'm on LDN and I find that it helps by getting rid of a long

standing problem with mucus, allowing me to eat more variety and by

strengthening my neck somehow. Best of all, I feel more robust (well,

you know what I mean!) and people say it too. I am a little weaker

overall but when I went off it I was a lot weaker! " This woman has had

ALS about 7 yrs and again is very disabled (and was before she started

LDN, also a year or so ago).

Some very important facts to be aware of before attempting to start LDN.

* Even though it is one of the safest drugs known (they even give it

to some new born babies) almost all neuros and a lot of GPs won't

prescribe it because it is not being used for its originally

intended purpose. Therefore, DON'T blow your best chance of

getting it prescribed by being unprepared and vague with your own

doctor who knows you and end up doing the doctor hunt trying to

find one who will prescribe it.

o You MUST AT LEAST go to www.lowdosenaltrexone.ORG (note:

capitals not required, just for emphasis - don't go to

lowdosenaltrexone.com as that site is a ripoff and waste of

time) and read up on everything. There are also some extra

information documents available which I can send to anyone

who wants them.

o You SHOULD join the lowdosenaltrexone Yahoo group (same as

PLS-FRIENDS) for at least a few weeks to get a feel for the

kind of things people experience, both good and not so

good. Side effects include possible insomnia and increased

stiffness, though these usually disappear after a few days

or weeks. A very few people suffer from increased fatigue,

but again most find it disappears after a few weeks if they

stick with it. There have been one or two people lately on

there who have had to give up, at least for now, due to

nausea etc although those people who ones who had lots of

allergies or sensitivities and had problems taking anything.

* You can't take LDN with any opiate derivative - even things like

codeine are out.

* LDN can take up to 9 months or more to give maximum benefit so

anybody who said they tried it but it didn't help and didn't stick

with it that long have possibly shortchanged it or themselves. It

was only after 9 months that I noticed a significant improvement

in my urinary urgency.

and most important of all

* The primary aim of LDN is to SLOW OR STOP PROGRESSION!! Some

people (apparently 30% - 40%) are lucky enough to also experience

symptom improvement, but don't go into it expecting that or you

could be disappointed.

Geo wrote:

> Some one in the group has tried LDN ,can't remember who

> If so how did it work? Ive read some good things on it

> GEO

[Guest guest]

> > >I have been on LDN for over a year now helps with leg spasms at

> nite

> > and also helps sleeping, I take one 4.5 mg tablet before

> bedtime.JOHN

> > B.

> > > Some one in the group has tried LDN ,can't remember who

> > > If so how did it work? Ive read some good things on it

> > > GEO

> > >

> >

>