Re: LDN and Spinal Cord Lesions

[Guest guest]

HI BETH,

HOW LONG WERE YOU ON LDN? YOU SHOULD HAVE EITHER GIVEN IT LONGER,

OR GONE UP TO 4.5MG.

I CAN'T TELL YOU HOW MANY TIMES I WANTED TO GIVE UP, BUT, WITH THE

ENCOURAGEMENT OF OTHERS

ON LDN, I HUNG IN THERE AND AM I GLAD.

I WILL NEVER GO OFF LDN....I LOVE IT. WHY DON'T YOU TRY THE 4.6MG

FOR 2 OR 3 MONTHS AND SEE WHAT

HAPPENS. NOVANTRONE IS A RADICAL ALTERNATIVE TO LDN. IT CAN DO

MORE HARM THAN HELP, I THINK.

WHATEVER YOU DECIDE, I WISH YOU WELL.

SALLY

>

[Guest guest]

How do you know that LDN did nothing in your body? It is suppose to stop the progession of the disease. Also it works very subtle and it might take a while but then you will notice things happening. How long where you on it?

Marie

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

From: Beth Ravenelle

salpal@... ; low dose naltrexone

Sent: Saturday, June 28, 2003 10:53 PM

Subject: [low dose naltrexone] LDN and Spinal Cord Lesions

Sally,

I tried the 3mg dose and it did absolutely nothing. I wonder if it is due the lesions which have accumulated in the spinal cord and atrophy of the cord. MS will celebrate ten years in this body in October. I lost the ability to walk for any distance in May and am going Monday for an ultrasound to see if I can tolerate Novantrone. The neurologist says it is my last hope. Anybody have any suggestions?

Thanks,

Beth

>From: "Sally"

>low dose naltrexone >Subject: [low dose naltrexone] Re: Great experience with LDN >Date: Sat, 28 Jun 2003 18:26:03 -0000 > >WELCOME GIRLFRIEND! >SO GLAD YOU SHARED YOUR SUCCESS STORY WITH THE OTHERS! >I WILL DEFFINATELY BE TRYING TO FOLLOW IN YOUR FOOTSTEPS (LITERALLY) >LOL >YOUR PAL, SAL > > > > > Hi Everyone > > I am so glad to see so many people that have discovered LDN, It is >a > > god sent for all of us with MS. I have been on 4.5mg since dec of > > last year and everyday there is improvement. All numbness is gone, > > my balance is so much improved and lately I can even walk normally > > for the first time in years. I used to have constant movement in >my > > head and I called them shock waves that would go through my head > > when i bent my head down and that is all gone to what a relief >that > > was my head is clear now. I didn't experience any stiffness at >all > > but we are individul so our experiences are different. I have had >MS > > now for 34 yrs maybe that is why the 4.5mg worked for me with all > > the damage I have on my brain I have lesions in both hemispheres, > > and the cerubellm. thought I would tell my story so everybody >could > > benefit from my experience. > > > > Love and Peace to all in the group > > Kathy >

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[Guest guest]

I agree. I think a lot of people get dismayed at not getting

immediate, noticeable results. But if we remember that the drug, LDN, is

not behaving in the same way as the ABC drugs, it may engender more

patience. For me, I've seen small subtle effects over 2+ months, and when

I'm doubtful I go back to the website and remind myself how it's working.

It functions more as a trigger to the body to right the immune system. The

other drugs typically used by MS patients, suppress or in some other way,

modulate the immune system (e.g. methotrexate that is about the only drug

for PPMS, blocks folic acid uptake, thereby *starving* the cells -- all

cells _ with the thought that an *overactive* immune system will suffer

the most. To me this does not seem like a very healthy/wholistic

approach).

I think if we accept the fact that there is NO drug that will cure MS, it

puts us in a better position to accept LDN's subtle

effects. People in this group have reported varying success stories with

LDN. For me, LDN is but one " gun " in my arsenal. It must be

combined with yoga-stretching, right diet, supplements, consistent

exercise, right attitude and prayer.

The sooner we accept the notion that there is no ONE thing that will help

us control MS, the sooner we will conduct an effective strategy for

dealing with it. To " do no greater harm " with the therapy we chose should

be the slogan we live by. If we must use the heavy artillery to fight this

disease, so be it. If we can lead healthier, happier lives using LDN (with

little or no side effects), then that seems to be a better option. I

just don't want to regret having " tried anything " to combat this disease

and live with the side effects of doing so. I had knee surgery 1.5 years

ago that I now regret doing and cannot un-do. The reason I regret it is

not that I didn't need a replacement ACL, but because by doing so it

brought to the forefront my MS symptoms big time. Who knows, it may have

happened anyway, but I do feel now that the surger/recovery hastened them;

I will never know. I do know that immediately following surgery my

symptoms increased 10-fold so even though my doc says it's a fluke, I

believe if I hadn't had the surgery, I would have experienced the symptoms

slowly over time. So bottom line is, don't do anything you may regret

later as you can't un-do it. LDN is a good alternative that works

extremely well in some cases. Everyone with MS should give it a chance to

do its magic. Next month I go from 3mg -> 4.5mg to see if I can enhance

its effects.

Sorry for the long post.

phil

On Sun, 29 Jun 2003, Marie Deady wrote:

> How do you know that LDN did nothing in your body? It is suppose to stop the

progession of the disease. Also it works very subtle and it might take a while

but then you will notice things happening. How long where you on it?

> Marie

> ----- Original Message -----

> From: Beth Ravenelle

> salpal@... ; low dose naltrexone

> Sent: Saturday, June 28, 2003 10:53 PM

> Subject: [low dose naltrexone] LDN and Spinal Cord Lesions

>

>

> Sally,

>

> I tried the 3mg dose and it did absolutely nothing. I wonder if it is due

the lesions which have accumulated in the spinal cord and atrophy of the cord.

MS will celebrate ten years in this body in October. I lost the ability to walk

for any distance in May and am going Monday for an ultrasound to see if I can

tolerate Novantrone. The neurologist says it is my last hope. Anybody have any

suggestions?

>

> Thanks,

>

> Beth

>

>

>

>

>

> >From: " Sally "

> >low dose naltrexone

> >Subject: [low dose naltrexone] Re: Great experience with LDN

> >Date: Sat, 28 Jun 2003 18:26:03 -0000

> >

> >WELCOME GIRLFRIEND!

> >SO GLAD YOU SHARED YOUR SUCCESS STORY WITH THE OTHERS!

> >I WILL DEFFINATELY BE TRYING TO FOLLOW IN YOUR FOOTSTEPS (LITERALLY)

> >LOL

> >YOUR PAL, SAL

> >

> >

> >

> > > Hi Everyone

> > > I am so glad to see so many people that have discovered LDN, It is

> >a

> > > god sent for all of us with MS. I have been on 4.5mg since dec of

> > > last year and everyday there is improvement. All numbness is gone,

> > > my balance is so much improved and lately I can even walk normally

> > > for the first time in years. I used to have constant movement in

> >my

> > > head and I called them shock waves that would go through my head

> > > when i bent my head down and that is all gone to what a relief

> >that

> > > was my head is clear now. I didn't experience any stiffness at

> >all

> > > but we are individul so our experiences are different. I have had

> >MS

> > > now for 34 yrs maybe that is why the 4.5mg worked for me with all

> > > the damage I have on my brain I have lesions in both hemispheres,

> > > and the cerubellm. thought I would tell my story so everybody

> >could

> > > benefit from my experience.

> > >

> > > Love and Peace to all in the group

> > > Kathy

> >

>

>

> ------------------------------------------------------------------------------

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>

[Guest guest]

Hmmm.... Let's see, I have MS in the brain, an "area" of sclerosis in my T5, spina bifida occulta from birth in my L5, and "2 lesions" but not demyelination in my C5.

Pretty much all but TWO of my long term symptoms have disappeared, never to return, well, so far, 68-72 days so far. I still have my left shoulder blade problem, and some spasming in my neck at times. I think the LDN has helped the L5, T5 and head resulting symptoms, but not what I think is related to C5.

I haven't yet had the opportunity, need, or desire to stop the LDN and see if the gone symptoms return. I saw some results within a few days, but it was a few weeks before I noticed other issues had changed... I don't know if it did in the first few days and I didn't notice, or maybe they took longer, but there is certainly a MAJOR difference in my day to day functioning. I take 3.0... I would like to get a 4.5 month worth so I can experiment and see how I feel with 4.5, but I don't know if my neuro will be wlling to do that. But so far, I'm very pleased and impressed with 3.0

Good luck Beth

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

From: Marie Deady

salpal@... ; low dose naltrexone ; Beth Ravenelle

Sent: Sunday, June 29, 2003 06:47

Subject: Re: [low dose naltrexone] LDN and Spinal Cord Lesions

How do you know that LDN did nothing in your body? It is suppose to stop the progession of the disease. Also it works very subtle and it might take a while but then you will notice things happening. How long where you on it?

Marie

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

From: Beth Ravenelle

salpal@... ; low dose naltrexone

Sent: Saturday, June 28, 2003 10:53 PM

Subject: [low dose naltrexone] LDN and Spinal Cord Lesions

Sally,

I tried the 3mg dose and it did absolutely nothing. I wonder if it is due the lesions which have accumulated in the spinal cord and atrophy of the cord. MS will celebrate ten years in this body in October. I lost the ability to walk for any distance in May and am going Monday for an ultrasound to see if I can tolerate Novantrone. The neurologist says it is my last hope. Anybody have any suggestions?

[Guest guest]

I like long posts, especially when they're positive

Your messages are great, type away!

If picture is worth a thousand words, you only gave us one picture. We want

more. LOL

I have to give up these groups for a few weeks. I don't know when I'm going to

turn off the email delivery, but I'm going camping 7/3-8 and if it goes well,

7/12-15 and 7/16-20, maybe even 7/25-27. 3 months ago I was wondering if I'd

be able to make it for 7/17-20 even. The grounds there are a 15 degree grade

and if it rains, you fall out of the angled porta potties!

Keep typing!

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

From: " G. Harding " <philh@...>

" Marie Deady " <Mardea@...>

Cc: <salpal@...>; <low dose naltrexone >; " Beth

Ravenelle " <Bethrav@...>

Sent: Sunday, June 29, 2003 07:12

Subject: Re: [low dose naltrexone] LDN and Spinal Cord Lesions

> I agree. I think a lot of people get dismayed at not getting

> immediate, noticeable results. But if we remember that the drug, LDN, is

> not behaving in the same way as the ABC drugs, it may engender more

> patience. For me, I've seen small subtle effects over 2+ months, and when

>