Re: Soliciting Progress Reports from CFS Patients on LDN

[Guest guest]

Jim, I am searching for the same information and more. I have found

a few messages at the following group.

http://www.prohealthnetwork.com/chat/forums/index.cfm?B=FM

You can search subject at the top left and get some messages. I

posted one there today under Is Anyone Taking Low Dose Naltrexone?

I have my prescription in hand and am trying to taper my pain meds

so I can start the 3.0 LDN. The material here and at the

low dose naltrexone web site make sense to me. My doc wasn't

enthusiastic but agreed to write the script. I have talked to Skip

at the pharmacy everyone talks about here and he is very, very

helpful and open to answering questions.

The web site mentions lowering cytokines and raising natural killer

cells which most of us with CFS have (I do.) Regulating those would

help a lot of our symptoms but I believe it would take months, not

days.

Do you have FMS along with the CFS? I do and believe the natural

killer cell increases would help CFS a lot. Trouble is, I'm not

sure I can stand the FMS pain without any med long enough to give

LDN a trial. I am in agony now and never even took large doses of

Darvocette, Darvon and occasionally Codeine. I'm trying to take it

preimarily for the pain relief.

Feel free to e-mail me or perhaps this kind group won't mind our

talking here about LDN for CFS/FMS. Oh, and I have been very ill

for 14 yrs, mostly homebound.

Beth

> Hi,

> I have had CFS for 10 yrs., have been researching LDN heavily of

> late, and would like to try it. I searched the archives, but

could

> find very little detail re: specific progress made by CFS patients

in

> this group. Could any of you CFS and/or Fibromyalgia

patients

> out there please respond and tell me:

[Guest guest]

I started LDN making homemade with the Revia on Dec. l7, 2004. I did

the crushed way for 5 months and got most my symptoms from one brain

lesion alleviated except the Fatigue and numbness. I had Extreme

Fatigue. Group here suggested I try the liquid homemade LDN from

Revia. I got INSTANT results of Energy and Well Being feeling and

really felt GREAT. I take 4.5mgs nightly. I just received my

compouded 4.5mgs LDN from Skip's Pharmacy and took first dose last

night. I do not feel the same as on the Liquid Revia. I feel the

fatigue and do not feel the well being feeling I have had since

starting the liquid Revia. I plan to take the liquid Revia thru the

holiday weekend and may try the compounded again but I think I'm

going back to the liquid Revia and ask my doc for a script for it.

Will be cheaper that way too with my insurance co-pay.

Rhonda

> Hi,

> I have had CFS for 10 yrs., have been researching LDN heavily of

> late, and would like to try it. I searched the archives, but could

> find very little detail re: specific progress made by CFS patients

in

> this group. Could any of you CFS and/or Fibromyalgia

patients

> out there please respond and tell me:

>

> 1) What dose you took and for how long?

>

> 2) How long did it take to start seeing results? Specifically

which

> symptioms improved and by how much? Which symptoms did not

improve?

>

> 3) Description of any side-effects or initial worsening?

(Including

> any sleep problems, and if so, what you did to fix them.)

>

> I would greatly appreciate your input on the above. The replies to

> this message could serve as a good update and resource for group

> users documenting LDN success with CFS.

> Thanks!

> Jim

[Guest guest]

-hi,

i have moderately severe CFS with autoimmune problems, neurally

mediated hypotension, white matter disease of the brain with 33 point

IQ drop, severe fatigue and very little endurance. severe neuro-

cognitive problems. i will be starting 3 mg. LDN from Irmat

pharmacy in a few days and i can hardly wait! i will let u know any

results i get from it. i tend to stay up most of the nite because i

feel better at that time, my thinking is the sharpest then. with very

little pain. . now i know that most of the endorphins for the day

are released between 2am-4am according to www.low dose naltrexone.org

this backs up my personal experiences. im trying to decide the best

time to take it, from within the 9pm-3am window. they say to take it

before going to sleep but since i ususlly get to sleep at 4 am, it

will have to be the latest at 3am. then i read that it can cause

sleep problems, insomnia, which is a big proplem for me. 1 of the

people replying to this questions says she takes it hours before

going to sleep, so i might try that. take care, zuzu

-- In low dose naltrexone , " Rhonda "

<rhondaleokitty@h...> wrote:

> I started LDN making homemade with the Revia on Dec. l7, 2004. I

did

> the crushed way for 5 months and got most my symptoms from one

brain

> lesion alleviated except the Fatigue and numbness. I had Extreme

> Fatigue. Group here suggested I try the liquid homemade LDN from

> Revia. I got INSTANT results of Energy and Well Being feeling and

> really felt GREAT. I take 4.5mgs nightly. I just received my

> compouded 4.5mgs LDN from Skip's Pharmacy and took first dose last

> night. I do not feel the same as on the Liquid Revia. I feel the

> fatigue and do not feel the well being feeling I have had since

> starting the liquid Revia. I plan to take the liquid Revia thru

the

> holiday weekend and may try the compounded again but I think I'm

> going back to the liquid Revia and ask my doc for a script for it.

> Will be cheaper that way too with my insurance co-pay.

>

> Rhonda

>

>

>

> > Hi,

> > I have had CFS for 10 yrs., have been researching LDN heavily of

> > late, and would like to try it. I searched the archives, but

could

> > find very little detail re: specific progress made by CFS

patients

> in

> > this group. Could any of you CFS and/or Fibromyalgia

> patients

> > out there please respond and tell me:

> >

> > 1) What dose you took and for how long?

> >

> > 2) How long did it take to start seeing results? Specifically

> which

> > symptioms improved and by how much? Which symptoms did not

> improve?

> >

> > 3) Description of any side-effects or initial worsening?

> (Including

> > any sleep problems, and if so, what you did to fix them.)

> >

> > I would greatly appreciate your input on the above. The replies

to

> > this message could serve as a good update and resource for group

> > users documenting LDN success with CFS.

> > Thanks!

> > Jim

[Guest guest]

Zulu, in addition to LDN fish oil and phosphytylcholine injections along with PS and making sure you have sufficient minerals are all important for brain fog or cognitive functioning. Kind regards, Kathy

[low dose naltrexone] Re: Soliciting Progress Reports from CFS Patients on LDN

-hi, i have moderately severe CFS with autoimmune problems, neurally mediated hypotension, white matter disease of the brain with 33 point IQ drop, severe fatigue and very little endurance. severe neuro-cognitive problems. i will be starting 3 mg. LDN from Irmat pharmacy in a few days and i can hardly wait! i will let u know any results i get from it. i tend to stay up most of the nite because i feel better at that time, my thinking is the sharpest then. with very little pain. . now i know that most of the endorphins for the day are released between 2am-4am according to www.low dose naltrexone.org this backs up my personal experiences. im trying to decide the best time to take it, from within the 9pm-3am window. they say to take it before going to sleep but since i ususlly get to sleep at 4 am, it will have to be the latest at 3am. then i read that it can cause sleep problems, insomnia, which is a big proplem for me. 1 of the people replying to this questions says she takes it hours before going to sleep, so i might try that. take care, zuzu -- In low dose naltrexone , "Rhonda" <rhondaleokitty@h...> wrote:> I started LDN making homemade with the Revia on Dec. l7, 2004. I did > the crushed way for 5 months and got most my symptoms from one brain > lesion alleviated except the Fatigue and numbness. I had Extreme > Fatigue. Group here suggested I try the liquid homemade LDN from > Revia. I got INSTANT results of Energy and Well Being feeling and > really felt GREAT. I take 4.5mgs nightly. I just received my > compouded 4.5mgs LDN from Skip's Pharmacy and took first dose last > night. I do not feel the same as on the Liquid Revia. I feel the > fatigue and do not feel the well being feeling I have had since > starting the liquid Revia. I plan to take the liquid Revia thru the > holiday weekend and may try the compounded again but I think I'm > going back to the liquid Revia and ask my doc for a script for it. > Will be cheaper that way too with my insurance co-pay. > > Rhonda> > > > > Hi,> > I have had CFS for 10 yrs., have been researching LDN heavily of > > late, and would like to try it. I searched the archives, but could > > find very little detail re: specific progress made by CFS patients > in > > this group. Could any of you CFS and/or Fibromyalgia > patients > > out there please respond and tell me:> > > > 1) What dose you took and for how long?> > > > 2) How long did it take to start seeing results? Specifically > which > > symptioms improved and by how much? Which symptoms did not > improve?> > > > 3) Description of any side-effects or initial worsening? > (Including > > any sleep problems, and if so, what you did to fix them.)> > > > I would greatly appreciate your input on the above. The replies to > > this message could serve as a good update and resource for group > > users documenting LDN success with CFS.> > Thanks!> > Jim