Re: primary progressive MS ?

[Guest guest]

I dont want to dash your hopes, but if the lyme is so advanced, most

tests would pick it up. If you doubt the diagnosis, I would

recommend getting B12 levels, that's frequently confused with MS.

Yash

> Hi--

>

> I am writing for my brother who has primary progressive MS. He's

been

> on LDN since October, 2003 (getting it from Skipp's Pharmacy).

During

> the past two months his symptoms have been getting worse: he used

to be

> able to walk without a cane, but now he needs to use it even

inside his

> house.

>

> My brother is wondering whether there are others with PP MS who

are not

> being helped. He is also wondering if it's possible he was

> misdiagnosed. I've heard that some people with advanced Lyme

Disease

> have been diagnosed as MS. He had an test for Lyme which

came

> back negative, but I've heard these may give false readings. Any

ideas??

>

> Thanks,

> S. (on LDN since Nov, 2002 for Nonhodgkins Lymphoma)

[Guest guest]

I have PPMS and have been on LDN since Nov 3, 2003. I never want to be without it! I was so progressed to begin with, but I do, for the first time in 5 years, feel as if I am holding my own. I have seen dramatic improvement in my bladder, spasms, and sleep. I now take Keppra, too, and am seeing even more improvement in spasms! Tell your brother to hang in there!

Marcie

[Guest guest]

On Sun, 25 Jan 2004 20:43:34 -0500, you wrote:

>Hi--

>

>I am writing for my brother who has primary progressive MS. He's been

>on LDN since October, 2003 (getting it from Skipp's Pharmacy). During

>the past two months his symptoms have been getting worse: he used to be

>able to walk without a cane, but now he needs to use it even inside his

>house.

>

I have had PPMS for many years and started taking LDN about a year

ago. It worked brilliantly well for about three months. My walking

improved to the point that I could take about 100 steps before I

needed support. My bladder was much better, only one visit per night.

However, after three months I started to get worse again. My walking

is just as bad as it ever was but my bladder is still a bit better.

Steve

[Guest guest]

I've experienced the same results, unfortunately, and am worse now than I've ever been in the past. Are you a patient of Dr. Bihari's? If so, I would definitely let him know.

From: steve@... [mailto:steve@...] Sent: Monday, January 26, 2004 9:47 AMlow dose naltrexone Subject: Re: [low dose naltrexone] primary progressive MS ?

On Sun, 25 Jan 2004 20:43:34 -0500, you wrote:>Hi-->>I am writing for my brother who has primary progressive MS. He's been >on LDN since October, 2003 (getting it from Skipp's Pharmacy). During >the past two months his symptoms have been getting worse: he used to be >able to walk without a cane, but now he needs to use it even inside his >house.>I have had PPMS for many years and started taking LDN about a yearago. It worked brilliantly well for about three months. My walkingimproved to the point that I could take about 100 steps before Ineeded support. My bladder was much better, only one visit per night.However, after three months I started to get worse again. My walkingis just as bad as it ever was but my bladder is still a bit better. Steve

[Guest guest]

Hi steve I am in much the same boat as you but I am considering it due to the fact it's winter here and we don't see the sun anymore. So I blame it on winter conditions and takr suplimental vit.D. Reg.

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

From: low dose naltrexone

Date: 01/26/04 07:45:05

low dose naltrexone

Subject: Re: [low dose naltrexone] primary progressive MS ?

On Sun, 25 Jan 2004 20:43:34 -0500, you wrote:>Hi-->>I am writing for my brother who has primary progressive MS. He's been >on LDN since October, 2003 (getting it from Skipp's Pharmacy). During >the past two months his symptoms have been getting worse: he used to be >able to walk without a cane, but now he needs to use it even inside his >house.>I have had PPMS for many years and started taking LDN about a yearago. It worked brilliantly well for about three months. My walkingimproved to the point that I could take about 100 steps before Ineeded support. My bladder was much better, only one visit per night.However, after three months I started to get worse again. My walkingis just as bad as it ever was but my bladder is still a bit better. Steve

____________________________________________________ IncrediMail - Email has finally evolved - Click Here

[Guest guest]

On Mon, 26 Jan 2004 08:01:30 -0700 (Mountain Standard Time), you

wrote:

>Hi steve I am in much the same boat as you but I am considering it due to

>the fact it's winter here and we don't see the sun anymore. So I blame it on

>winter conditions and takr suplimental vit.D. Reg.

>

It's winter here too. I take D3 and also have five minutes of facial

UV. No idea if it's helping.

Steve

[Guest guest]

Good morning, :

Since you have NHL, how have you been progressing since you started LDN in

November, 2002? I am especially interested in your experiences because I've

been trying to get an acquaintance to take LDN for his NHL for several

months now.

Noland

rangeus50@...

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

From: " " <ebaker@...>

<low dose naltrexone >

Sent: Sunday, January 25, 2004 6:43 PM

Subject: [low dose naltrexone] primary progressive MS ?

> Hi--

>

> I am writing for my brother who has primary progressive MS. He's been

> on LDN since October, 2003 (getting it from Skipp's Pharmacy). During

> the past two months his symptoms have been getting worse: he used to be

> able to walk without a cane, but now he needs to use it even inside his

> house.

>

> My brother is wondering whether there are others with PP MS who are not

> being helped. He is also wondering if it's possible he was

> misdiagnosed. I've heard that some people with advanced Lyme Disease

> have been diagnosed as MS. He had an test for Lyme which came

> back negative, but I've heard these may give false readings. Any ideas??

>

> Thanks,

> S. (on LDN since Nov, 2002 for Nonhodgkins Lymphoma)

>

>

>

>

>

[Guest guest]

Steve:

Have you tried not taking the LDN for a couple of days every couple of weeks

or so? Dr. Lawrence recommends this method and it works for some people.

For some reason, it sort of re-starts the endorphin-LDN interaction.

Noland

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

From: <steve@...>

<low dose naltrexone >

Sent: Monday, January 26, 2004 7:47 AM

Subject: Re: [low dose naltrexone] primary progressive MS ?

> On Sun, 25 Jan 2004 20:43:34 -0500, you wrote:

>

> >Hi--

> >

> >I am writing for my brother who has primary progressive MS. He's been

> >on LDN since October, 2003 (getting it from Skipp's Pharmacy). During

> >the past two months his symptoms have been getting worse: he used to be

> >able to walk without a cane, but now he needs to use it even inside his

> >house.

> >

>

> I have had PPMS for many years and started taking LDN about a year

> ago. It worked brilliantly well for about three months. My walking

> improved to the point that I could take about 100 steps before I

> needed support. My bladder was much better, only one visit per night.

> However, after three months I started to get worse again. My walking

> is just as bad as it ever was but my bladder is still a bit better.

>

> Steve

>

>

>

>

>

>

[Guest guest]

On Wed, 28 Jan 2004 10:39:27 -0700, you wrote:

>Steve:

>

>Have you tried not taking the LDN for a couple of days every couple of weeks

>or so? Dr. Lawrence recommends this method and it works for some people.

>For some reason, it sort of re-starts the endorphin-LDN interaction.

>

>Noland

>

It is to prevent " accommodation " . I have tried the method and it

slowed the decline but didn't stop it. My current regime, also

suggested by Bob Lawrence, is five days of 4.5mg, five days of 3mg and

then a two day break.

Steve