Re: would like to know if someone has similar problem

[Guest guest]

> For three years+ I have been dealing with a progressive muscle

> problem of unknown cause with no proposed treatment. My thigh and

> back muscles are becoming weaker. Recently, it has progressed into

> my neck, so that I have difficulty holding my head up. I have

> trouble walking up stairs and getting out of chairs. I can not lift

> anything over a few pounds. Biopsy shows non necrotizing myopathy.

> Since this condition 1st became apparent after I had Lyme disease,

> we thought it might have been Lyme, but I have not tested positive

> for Lyme by any of the known tests. I had recieved a Lyme vaccine

> prior to my getting the Lyme infection. There is one theory that I

> had a bad reaction to the vaccine(which has been removed from the

> market). Most recent Dr has said no to that theory. One thought is

> that the combination of the vaccine and getting Lyme turned my

> immune system on and it didn't turn off. Instead it turned on my

> muscles. Thus an autoimmune disease. A recent Dr gave me a copy of

> an article about LDN. So here I am. I am wondering if there is

> anyone out there who might be suffering from a similar condition?

> One concern I have is that if LDN strengthens the immune system, I

> might be worse off. Steroids have been considered, but I am getting

> very conflicting opinions on that treatment, because the problem

> doesn't seem to be inflamatory in nature. If there is anyone out

> there who has had a similar experience, I'd love to comunicate with

> you. Time is becoming critical as thge condition is accelerating now.

> Thanks,

===========

I am that person. My muscles are very weak in my thighs, arms, entire torso

front and back and neck also. I was dx'd Chronic Progressive MS at age 26 in

1989. I have in the past also been tested for ALS(Lou Gerhig's), Muscular

Dystrophy, Polymyositis(sp?), Lyme, Murcury poisoning, Lupus--tested positive

twice and borderline positive once, Rheumatoid Arthritis.

Two years ago I decided to try 4.5mg of LDN and my life changed for the better.

I no longer suffer from excruciating pain only moderate to mild pain now, with

the help of LDN and lots of physical therapy combined on my muscles I can now

get around without my mobility scooter. LDN cannot repair the permanent muscle

damage, I've accepted that. LDN could not repair my very significant hearing

loss, I've learned to accept that also. LDN DID and still HAS my Chronic

Progressive MS halted dead in its tracks for 2 years and 1 month. I take no

CRAB's(never have), I have never used the chemo's, I have unfortunately used

intravenous steroids in past but I do not anymore since going on LDN...don't

need them.

If you do decide to use LDN make sure you use one of the reliable compounding

pharmacies listed on the LDN website. A reputable compounding pharmacy knows to

use Pure Naltrexone Powder, not the grind up 50mg naltrexone tablets for the

capsules. Have your pharmacy use Acidophilus or lactose or avicel as the

filler.

Avoid Calcium Carbonate and or Cornstarch as fillers. Even though you may be

told they are good fillers by your pharmacy DON'T let your pharmacy use these

fillers in your capsules.

If you are male start with 3.0mg or you can start with 1.5mg and build to 3.0mg

and if you can tolerate 4.5mg then go to that but if you start at 1.5mg be sure

to up to 3.0mg as soon as you can. You can have your doc write your script for

1.5mg capsules and you can adjust to 3.0mg by taking two capsules or up to 4.5mg

by taking 3 capsules and when you've decided on 3.0mg or 4.5mg then your doc can

specify 3.0mg or 4.5mg on next script.

Have you been checked for MS(multiple sclerosis) also get any muscular dystrophy

type diseases ruled out?

If you do have an autoimmune disease...your recent doc is on his/her game...what

a fantastic doc!!

LDN website

http://www.low dose naltrexone.org

[Guest guest]

--- In low dose naltrexone , " JPEABS " <jpeabs1@c...>

wrote:

> For three years+ I have been dealing with a progressive muscle

> problem of unknown cause with no proposed treatment. My thigh and

> back muscles are becoming weaker. Recently, it has progressed into

> my neck, so that I have difficulty holding my head up. I have

> trouble walking up stairs and getting out of chairs. I can not

lift

> anything over a few pounds. Biopsy shows non necrotizing myopathy.

> Since this condition 1st became apparent after I had Lyme disease,

> we thought it might have been Lyme, but I have not tested positive

> for Lyme by any of the known tests. I had recieved a Lyme vaccine

> prior to my getting the Lyme infection. There is one theory that I

> had a bad reaction to the vaccine(which has been removed from the

> market). Most recent Dr has said no to that theory. One thought is

> that the combination of the vaccine and getting Lyme turned my

> immune system on and it didn't turn off. Instead it turned on my

> muscles. Thus an autoimmune disease. A recent Dr gave me a copy of

> an article about LDN. So here I am. I am wondering if there is

> anyone out there who might be suffering from a similar condition?

> One concern I have is that if LDN strengthens the immune system, I

> might be worse off. Steroids have been considered, but I am

getting

> very conflicting opinions on that treatment, because the problem

> doesn't seem to be inflamatory in nature. If there is anyone out

> there who has had a similar experience, I'd love to comunicate

with

> you. Time is becoming critical as thge condition is accelerating

now.

> Thanks,

Have you had a ANA test for Lupus? I have gone through a similar

experience dealing with Lupus. The LDN has helped me quite a bit,

but my arm and hand strength are still weeker than they were 4 yrs

ago, I also get a painful stiffness all over my body at times, but

not so much since starting LDN. I would ask your doctor to do a

Lupus panel blood work. If that is what it is, it is best to treat

it as soon as possible so it does not get worse.

Sincerely,

Betty