Anybody using LDN as first MS treatmnent?

[Guest guest]

I appreciate all those who have responded to other posts about your

experience with LDN. With only one exception I recall, they have used

on of the ABC-R-N drugs. I have not and would like to hear from

anyone else who has not. Everyone has been so helpful. Thank you for

the group.

[Guest guest]

- Never used any of the CRAB's. Only one round of IV steroid

treatment then I went direct onto LDN. (Against my Neuro's advice.)

Am pretty happy.

Cinders

[Guest guest]

My daughter has used only LDN. She hasn't seemed to get worse. She will

have an MRI this month and I am curious what it will show.

Edna

At 09:11 PM 11/4/2004 +0000, you wrote:

>I appreciate all those who have responded to other posts about your

>experience with LDN. With only one exception I recall, they have used

>on of the ABC-R-N drugs. I have not and would like to hear from

>anyone else who has not. Everyone has been so helpful. Thank you for

>the group.

>

>

>

>

>

>

>

>

[Guest guest]

As a SPMSer diagnosed over twenty years ago the medical profession pretty much lost me in the influx of new patients that were constantly being discovered.

I also never raised a rucuss as I thought if I ignored it it will leave me alone.

Well maybe maybe not but anyway I was only prescribed Imuran (Azathioprine) once and I almost died from taking one pill so I threw the rest away.

I once asked why I was never prescribed any drugs and I was told that without a drug plan,

they would place me in the poor house. (I still respect that Dr.more so than my Nuerologist) He actually told me that the herbal remedys I was on were everybit as good as the CRAB drugs.

He has since died from a heart attack ( very mysterious too)as he was only fifty and I thought in great shape.

Anyway LDN is really the first thing I have taken to treat MS symptoms,and I was Diagnosed in 1982, they had a wait and see attitude then too,cause there was so few real drugs back then.

I guess I used herbal and Vitamins as a first treatment but is that not just good sense.

If you want we can compare notes privately at length just e-mail me.

Reg.

-------Original Message-------

From: low dose naltrexone

Date: 11/04/04 14:23:45

'low dose naltrexone '

Subject: RE: [low dose naltrexone] Anybody using LDN as first MS treatmnent?

LDN as kind of a third try. Did Avonex once, felt like poison, did Copaxone3 time before my body rejected it with hives and rash. LDN for 5 going into6th month and happy with it. I also try to eat healthy.-----Original Message-----From: linda_ssk [mailto:linda_ssk@...]Sent: Thursday, November 04, 2004 4:11 PMlow dose naltrexone Subject: [low dose naltrexone] Anybody using LDN as first MS treatmnent?I appreciate all those who have responded to other posts about your experience with LDN. With only one exception I recall, they have used on of the ABC-R-N drugs. I have not and would like to hear from anyone else who has not. Everyone has been so helpful. Thank you for the group.

[Guest guest]

I never even use aspirin type pain relievers unless it's really bad.

This is my story: http://p220.ezboard.com/fldnlow dose naltrexonefrm8.showMessage?topicID=4.topic

----- Original Message -----

From: linda_ssk

low dose naltrexone

Sent: Thursday, November 04, 2004 16:11

Subject: [low dose naltrexone] Anybody using LDN as first MS treatmnent?

I appreciate all those who have responded to other posts about your experience with LDN. With only one exception I recall, they have used on of the ABC-R-N drugs. I have not and would like to hear from anyone else who has not. Everyone has been so helpful. Thank you for the group.

[Guest guest]

>

>

> >I appreciate all those who have responded to other posts about your

> >experience with LDN. With only one exception I recall, they have

used

> >on of the ABC-R-N drugs. I have not and would like to hear from

> >anyone else who has not. Everyone has been so helpful. Thank you

for

> >the group.

> >

> >

> >

> >

> >

> >

> >

> >

[Guest guest]

Hi like u i have not used any other drugs for ms other than LDN i am spms and have had ms for about 15 yrs i hav been on LDN for about 9 mths @4.5 mgs like everybody i hav a much greater feeling of wellbeing most of the time and i can still walk although most of the time i use a stick i will never use any ABC drugs as i dont believe they work in our best interest, any thing i can help with please get in touch

Andy

[Guest guest]

> I appreciate all those who have responded to other posts about

your

> experience with LDN. With only one exception I recall, they have

used

> on of the ABC-R-N drugs. I have not and would like to hear from

> anyone else who has not. Everyone has been so helpful. Thank you

for

> the group.

I am using LDN at 4.5mg as my first and only " MS " " treatment " since

diagnosis in Feb this year. Also had mercury fillings out and doing

metals IV chelation.

My insurance company would have paid for a couple of years of CRAB

drugs but after reading the LDN site, the archives of this site and

the clcinical studies of CRABs (and there marginal results) I chose

LDN. I did a phone consult with Dr. B after seeing 2 neuros locally.

I am 49 years old with an engineering degree. My optical neuritis

led to the Dx. I have had a numb side for almost 6 years that I

believe to be my first major attack. My eye is still difficult to

see through but managable. I watch my diet (minimal grains) and

mostly now follow the Maker's Diet. I inject B12 daily

(methycobalimin) and feel pretty good most days, with very few off

days and pretty good energy. I also recently started Bio-Identical

Hormone replacement and believe it has helped me immensely with

strength (I beleive I had muscle wasting) coordination and balance.

I also take a variety of supplements (many come and go) but fish

oil, Vitamin C and E are regulars.

I believe LDN to be the cornerstone of my general improvement from

the " MS " diagnosis.

Hope that helps,

Alan

[Guest guest]

>

> I appreciate all those who have responded to other posts about your

> experience with LDN. With only one exception I recall, they have used

> on of the ABC-R-N drugs. I have not and would like to hear from

> anyone else who has not. Everyone has been so helpful. Thank you for

> the group.

========

I have never used the CRAB drugs nor have I ever tried Novantrone(chemo).

[Guest guest]

My daughter, , began taking LDN in early August. The dose for the

first month was 1.5 mg, the second month was 3 mg and it has been at 4.5 mg

since then. I will let you know what the MRI shows.

Edna

At 12:38 AM 11/5/2004 +0000, you wrote:

>

> > My daughter has used only LDN. She hasn't seemed to get worse.

>She will

> > have an MRI this month and I am curious what it will show.

> >

> >

> > Edna

> >

> >

>Thank you, Edna. How long has your daughter used LDN? We all hope

>her MRI will show positive results. Would you let us know. Thanks for

>posting.

> >

> >

[Guest guest]

In 1987-1988 I had steroid & Imuran treatment for one year, 8 spinal

taps and between oral steroids and Imuran, after which I refused

anything else, and in Trinidad, West Indies ,where I live,we cannot

get CRAB and they would not insure us either, so the situation is

rather financialy difficult one. I started taking LDN 5th September

2004. I am in wheelchair and have been diagnosed 21 years ago but

nevertheless I feel that I have more energy, I can do more stuff and

I feel overall better, more relaxed, interested in life. I take

also a lot of supplements which I know helps. Recently I was able to

start exercises.

My MS was going down hill for number of years, and then when I

started taking moreherbs and mega dosages of vitamins and minerals,

finally after vry long time I have seen results. Here I have to

mention something I did also, it is rather dangerous, but I know it

helped. I suffer with constipation and I came to the point where I

was totally fed up. I bought a tea " Trim Maxx " and used it daily

for number of years. I repeat....THIS IS VERY DANGEROUS... I do it

now only once a month. The amount of stuff came out from me over

those years, is just unbelievable.

I believe in rejuvenation, obviously it is very hard process,

because one has to be watching one's thought processes as well, it

takes years to see some results. So I am so glad that I found this

group and LDN to help me to recupurate easier.

Zora

Trinidad

West Indies

>

> I appreciate all those who have responded to other posts about

your

> experience with LDN. With only one exception I recall, they have

used

> on of the ABC-R-N drugs. I have not and would like to hear from

> anyone else who has not. Everyone has been so helpful. Thank you

for

> the group.

[Guest guest]

Hi ,

My husband, a ppms, is about to try LDN. (We have ordered and are

waiting for it to arrive.) He has never on any MS treatment besides

spasticity lowering drugs (baclofen). Our friends in this group

encouraged us to try and I am praying LDN will work for my husband. I

will let you know the result when he starts taking it.

Chi

> >

> >

> > >I appreciate all those who have responded to other posts about

your

> > >experience with LDN. With only one exception I recall, they have

> used

> > >on of the ABC-R-N drugs. I have not and would like to hear from

> > >anyone else who has not. Everyone has been so helpful. Thank

you

> for

> > >the group.

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

[Guest guest]

's MRI results came today. Her brain has not changed at all since

the MRI done in March of 2004. The report says the " lesions are unchanged

in number, size and configuration when compared to the MRI of

03/15/04. " Something else is " slightly less conspicuos now when compared

to the MRI of 03/15/04. " The only medication specifically for the MS that

has been on is LDN. She's never had a shot or IV of any of the

other medications typically prescribed for MS.

Edna

At 09:22 PM 11/4/2004 -0800, you wrote:

>My daughter, , began taking LDN in early August. The dose for the

>first month was 1.5 mg, the second month was 3 mg and it has been at 4.5 mg

>since then. I will let you know what the MRI shows.

>

>Edna

[Guest guest]

i am on beta-seron but am gonna tr low dose nalrexone,go to neurologist

the 15th for prescription........my moms neighbor is his first person on

it.....candy

Wishing You All The Best This Holiday Season,,,,,Candy &

[Guest guest]

I've had symptomes for 9 years and just had a MRI this year and

found One lesion on the brain. 7mm X 9mm and none on spine and neck

so therefore, they don't dx MS. I'm not waiting around for another

lesion so they can call it MS. I've had no treatment and will be on

LDN 1st treatment so will be interesting to see how goes. Gosh, now

if I have to lower to l.5mgs what do I use to measure that? Know

the sea monkey spoon now for 3mgs and pony bead 7mm for 4.5 what for

the 1.5 just in case I have to start there and increase.

This year my symptoms have increased more than ever. I have

numbness, pain, dizziness, LHermittees(shocking), pins and needles,

bugs crawling feeling in head, memory problems, unbalance, FATIGUE

and not sure what else at the moment. This summer, the heat kicked

my ass!! Some symptoms have let up since cooler but not better like

last year. All the neuro offered was an anti-depressant which is

something I will not ever take. Something to just put me in a fog

so my symptoms will get worse and they can still have me as a

patient getting worse. I put off going to a doc 9 years b/c the

nuts offered me a anti 9 years ago and said probably stress and blew

off my symptoms when I knew something was very wrong. They give out

anti-dep. like candy and not even try to help people. Makes me so

MAD!! I feel like I know more than them most the time.

Rhonda

[Guest guest]

rhonda,i have m.s . and have been on beta -seron shots since 97 now am

going to neurologist the 15th to get prescrption for l.d.n. my moms

neighbor is doing great on it...i am in a wheelchair...but can still

transfer myself.candy

Wishing You All The Best This Holiday Season,,,,,Candy &

[Guest guest]

Are you sure your doc will give you a script for LDN? I haven't

even tried asking my neuro yet b/c he claims he hasn't dx me yet.

They are so stupid acting like you have to have more than one lesion

to dx or help you. I am DXED with one lesion and want help and

symptoms are rapidly progressing. I ordered from Medsmex.com and

then when I go back in Feb. and I'm better(hope so) I will mention

it to him and see if he will give me a script where I can get it

compounded. I thought someone posted that if you get a 3 month

supply from Skips it's $10 a month but then seems someone posted a

larger $. If it's cheaper thru medsmex, I will just measure. Has

Skips changed the red capsule back to whatever they were using

before? What filler is in the Revia? If there is so much filler

in the Revia, how do we know if we are even getting the mg's we

measure in meds or filler?

Rhonda

> rhonda,i have m.s . and have been on beta -seron shots since 97

now am

> going to neurologist the 15th to get prescrption for l.d.n. my moms

> neighbor is doing great on it...i am in a wheelchair...but can

still

> transfer myself.candy

>

> Wishing You All The Best This Holiday Season,,,,,Candy &

[Guest guest]

YES DOC WILL GIVE ME PRESCRIPTION LIKE HE TOLD COLLEEN ITS WORTH A

SHOT.....SO I GO DEC. 15TH TOO HIM MY MOM IS TAKING ME.. COLLEEN IS

HRNEIGHBOR AND MY FRIEND

Wishing You All The Best This Holiday Season,,,,,Candy &

[Guest guest]

Hi

Yes, I am using LDN as my first MS treatment. When I was dx'd with MS

I researched the CRAB's and they all seemed lacking to me. I mean, a

maybe 30% chance of 30% less disease activity was a miserable result

in my mind, and when I weighed the cost and possible side effects,

well it was simply unacceptable to me. (Despite my neuro insisting I

go on one of the CRABS.) I kept looking for something better and

found LDN. That was almost 8 months ago.

Yes, I did have another flair up - at about 6 months into the LDN,

but it was very mild and lasted a much shorter time than I was

accustomed to. I am hoping it will be my last one. Only time will

tell. I don't believe I have any residual disability from that attack.

I have had one round of steroid treatment, to " save " my eyesight -

about 9 or 10 months ago, but will never do it again, unless I am

blind again. It is something I will only do if absolutely necessary.

I have put my faith in LDN, and so far, am pleased and grateful I

found this medication.

Cinders - RRMS