Re: severe chronic fatigue syndrome/i am a new member

[Guest guest]

Best of luck. DEstinylaurax1957 <laurax1957@...> wrote:

HI EVERYONE,I AM A NEW MEMBER WHO HAS HAD SEVERE CFS AND FIBOMYALGIA FOR 20YRS,AND I AM PRETTY DIABLED AND UNABLE TO WORK.I AM ABOUT TO START LDN,AND I WOULD BE VERY GRATEFUL TO HEAR FROM ANYMEMBERS WHO HAVE MY CONDITION,IF THEY HAVE IMPROVED AT ALL ON THISMEDICATION,AND HOW LONG IT TOOK??WAS YOUR FATIGUE ELEVIATED AT ALL??BEST WISHES,LAURA

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[Guest guest]

I suggest you take the LDN the liquid method. I had extreme fatigue

and took the LDN the crushed method from Dec. 17, 2004 til June 2005

and started the liquid 4.5mgs in June and overnight I had ENERGY and

still do just not as wired b/c the endorphin rush from catching up

tones down a bit after a while. I had symptom relief from the crushed

but the fatigue didn't let up until the liquid 4.5mgs was taken. Also,

last year my brain lesion was active and last MRI in June was Inactive..

Rhonda

> HI EVERYONE,

> I AM A NEW MEMBER WHO HAS HAD SEVERE CFS AND FIBOMYALGIA FOR 20

> YRS,AND I AM PRETTY DIABLED AND UNABLE TO WORK.

> I AM ABOUT TO START LDN,AND I WOULD BE VERY GRATEFUL TO HEAR FROM ANY

> MEMBERS WHO HAVE MY CONDITION,IF THEY HAVE IMPROVED AT ALL ON THIS

> MEDICATION,AND HOW LONG IT TOOK??

> WAS YOUR FATIGUE ELEVIATED AT ALL??

> BEST WISHES,

> LAURA

[Guest guest]

> HI EVERYONE,

> I AM A NEW MEMBER WHO HAS HAD SEVERE CFS AND FIBOMYALGIA FOR 20

> YRS,AND I AM PRETTY DIABLED AND UNABLE TO WORK.

> I AM ABOUT TO START LDN,AND I WOULD BE VERY GRATEFUL TO HEAR FROM

ANY

> MEMBERS WHO HAVE MY CONDITION,IF THEY HAVE IMPROVED AT ALL ON THIS

> MEDICATION,AND HOW LONG IT TOOK??

> WAS YOUR FATIGUE ELEVIATED AT ALL??

> BEST WISHES,

> LAURA

hi ,

i also have severe CFIDS, FM, and neurological and autoimmune

disease and have been unable to work since april 2000. i am also

basically homebound. i started taking 3mg.capsule LDN with avicel

filler on july 16, 2005 . i initially experienced insomnia and it is

still a problem, tho alot less severe than when i 1rst started taking

it. i also for the 1rst 5 days or so experienced a

weird " cotton_head " type of head feeling which would go away in the

middle of the afternoon. thankfully, that only lasted the 1rst few

days also, each day the feeling decreasing with intensity. as for

the inprovements so far, ive noticed that i am no longer exhausted

after eating a meal. i always had to sit down on the couch after

eating a meal and rest. before, i had a hard time, my neck muscles

supporting my head got very weak and i had to sit down with a neck

pillow supporting my head. thats GONE!!!! also i have a slight

increase of feeling of well-being. no noticable increases of energy,

so far, and ive noticed i have to lie down from 3-5pm on some days

(maybe 3 times a week) because i get so sleepy. i will be asking my

CFIDS doc in mid-sept. to increase the dosage to 4.5 mg., but im glad

i started out at 3 mg. i take my LDN at 1:30 am and go to sleep at

about 3:30 am. i also have been taking 1,000mg. of DL Phenylalanine

when i 1rst wake up and in the late afternoon to potentiate the

effects of the endorphins and enkephalins. sorry for the long post

but i wanted to give u all the info i have so far. zuzu