RE: Re: Migration?

[Guest guest]

I'm delighted to see any posts from anybody, at this point! I was

chalking up the quietude to January being the month from hell. In

addition to the almost non-stop snow, ice, winds, and very bitter temps

(and I'm not THAT far north!), I welcomed the New Year with the flu.

Needless to say around this group, I am still trying to recover what

bits of energy I had before that horrible month arrived.

The muscle pain worsened, the fatigue has been unreal, and the OI

worsened.

Just 3 days ago, I figured out the cause of at least part of the muscle

pain. It was definitly an acid type pain so I began scarfing down every

alkaline type of supplement I had in the house, since I wasn't up to

cooking veggies, or shopping for fruit. I do have supplements with

veggie and fruit extracts and by the 2nd day of overdosing on these I

slept for the first time in months with no meds!

Didn't last, but still think I'm on the right track for the pain because

I haven't had much of it in the daytime, at least.

Ok, small report, but better than nothing. Even typing an email is

tiring, but I couldn't manage much of that at all in January.

I hope some more people on this list will jump in. Does anyone have any

success, however small, to mention?

I may be different from others, but I much prefer to get email on a list

in my inbox than remember to go to a forum.

Sharon

> [mailto: ] On Behalf Of marti_zavala

> Sent: Friday, February 18, 2011 7:44 PM

> Hi Marcia,

>

> I think posts have dropped off in this forum for several reasons. A

couple of

> them go back a year or two.

>

> 1. I noticed that posts dropped off considerably when the group voted

to allow

> psychological treatments and topics, such as GET, CBT, Gupta, etc.

Many

> people were upset and left the group.

>

> /surveys?id=27

> 28634

>

> 2. I noticed that posts dropped off as people moved over to the Yasko

group to

> investigate that for themselves. Many people are not well enough to

handle

> multiple groups and have temporarily moved over to one of the Yasko

boards.

>

> 3. Cort revamped his Phoenix Rising site to include much

easier

> navigation and a forum. This forum is more like the Pro Health forum

and

> less like a forum which resolved many issues users were having

with

> the interface. Plus, he single-handedly searches for current

studies

> while this group is user directed. This makes it easier for those of

us who are

> not well to keep up with the latest studies as he has done and is

doing all of the

> hard research and footwork.

>

> http://aboutmecfs.org/

>

> While the lead moderator's goal for this site is quality vs. quantity,

I do miss

> the increased traffic. The archives in this forum are so rich and it

is easier to do

> everything in one place but I just don't think that is possible to do

and keep up

> with the latest. Seems that we should really be on at least 3 forums,

a support

> group, an experimental group such as this one, and a research based

site like

> Cort's.

>

> Hope that helps,

> Marti

>

>

> >

> > I haven't been posting much recently, just haven't felt up to it.

However, it

> seems like overall number of posts have fallen on this forum as well.

I can

> think of three, no wait, four possible reasons:

> >

> > 1. Everybody got better and went out to live their lives! (ha ha ha,

I wish)

> >

> > 2. Everybody got a lot worse, and like me didn't feel like posting

much. (I

> hope not)

> >

> > 3. There aren't as many burning issues at the moment, or promising

new

> theories or treatments to talk about.

> >

> > 4. The conversation has migrated to other places, boards, forums.

> >

> > Or maybe it's a mix of the above?

> >

> > If the conversation has migrated, mayhap someone could let me know

> where. Even if I don't feel like posting, I still like to browse to

try to keep up

> with the discussion.

[Guest guest]

Hi Marti,

That makes sense. It's a pity we can't be everywhere at once, eh?

Marcia M. in Salem, MA

On Feb 18, 2011, at 7:43 PM, marti_zavala wrote:

> Hi Marcia,

>

> I think posts have dropped off in this forum for several reasons. A

> couple of them go back a year or two.

>

> 1. I noticed that posts dropped off considerably when the group

> voted to allow psychological treatments and topics, such as GET,

> CBT, Gupta, etc. Many people were upset and left the group.

>

> /surveys?id=2728634

>

> 2. I noticed that posts dropped off as people moved over to the

> Yasko group to investigate that for themselves. Many people are not

> well enough to handle multiple groups and have temporarily moved

> over to one of the Yasko boards.

>

> 3. Cort revamped his Phoenix Rising site to include much

> easier navigation and a forum. This forum is more like the Pro

> Health forum and less like a forum which resolved many issues

> users were having with the interface. Plus, he single-handedly

> searches for current studies while this group is user directed. This

> makes it easier for those of us who are not well to keep up with the

> latest studies as he has done and is doing all of the hard research

> and footwork.

>

> http://aboutmecfs.org/

>

> While the lead moderator's goal for this site is quality vs.

> quantity, I do miss the increased traffic. The archives in this

> forum are so rich and it is easier to do everything in one place but

> I just don't think that is possible to do and keep up with the

> latest. Seems that we should really be on at least 3 forums, a

> support group, an experimental group such as this one, and a

> research based site like Cort's.

>

> Hope that helps,

> Marti

>

>

> >

> > I haven't been posting much recently, just haven't felt up to it.

> However, it seems like overall number of posts have fallen on this

> forum as well. I can think of three, no wait, four possible reasons:

> >

> > 1. Everybody got better and went out to live their lives! (ha ha

> ha, I wish)

> >

> > 2. Everybody got a lot worse, and like me didn't feel like posting

> much. (I hope not)

> >

> > 3. There aren't as many burning issues at the moment, or promising

> new theories or treatments to talk about.

> >

> > 4. The conversation has migrated to other places, boards, forums.

> >

> > Or maybe it's a mix of the above?

> >

> > If the conversation has migrated, mayhap someone could let me know

> where. Even if I don't feel like posting, I still like to browse to

> try to keep up with the discussion.

> >

> > Thanks,

> >

> > Marcia on

> > in Salem, Massachusetts

> >

>

>

>

[Guest guest]

Dolores,

When you say " success " , what do you mean?

M.

On Feb 18, 2011, at 9:31 PM, dolores wrote:

> I am having success with LDN

>

>

> > > >

> > > > I haven't been posting much recently, just haven't felt up to

> it.

> > However, it

> > > seems like overall number of posts have fallen on this forum as

> well.

> > I can

> > > think of three, no wait, four possible reasons:

> > > >

> > > > 1. Everybody got better and went out to live their lives! (ha

> ha ha,

> > I wish)

> > > >

> > > > 2. Everybody got a lot worse, and like me didn't feel like

> posting

> > much. (I

> > > hope not)

> > > >

> > > > 3. There aren't as many burning issues at the moment, or

> promising

> > new

> > > theories or treatments to talk about.

> > > >

> > > > 4. The conversation has migrated to other places, boards,

> forums.

> > > >

> > > > Or maybe it's a mix of the above?

> > > >

> > > > If the conversation has migrated, mayhap someone could let me

> know

> > > where. Even if I don't feel like posting, I still like to browse

> to

> > try to keep up

> > > with the discussion.

> >

>

>

>

[Guest guest]

For some cognitive reason that I don't know, It is difficult for me to follow

and post to forums. I wish this list was active.I also miss the old days(but not

the never ending arguments about stress and/or psychological treatments)

Thanks

Nil

Re: Migration?

Hi Marcia,

I think posts have dropped off in this forum for several reasons. A couple of

them go back a year or two.

1. I noticed that posts dropped off considerably when the group voted to

allow psychological treatments and topics, such as GET, CBT, Gupta, etc. Many

people were upset and left the group.

/surveys?id=2728634

[Guest guest]

Delores,

This is an extremely encouraging report! (understatement of the year)

Would you mind sharing your dosage, if it's daily, and how long it took

you to realize it was working for you?

I tried it for 4 months in '09 and had about 3-4 days where I felt I was

reborn and then all the other days I was even worse than usual. After

experimenting with different doses, down to 1/2 mg, then trying it only

every few days, I finally gave up.

I'd give my eyeteeth to have results anywhere near yours!

Way to go!

Sharon

> [mailto: ] On Behalf Of dolores

> Sent: Saturday, February 19, 2011 1:19 PM

> Well lets see. Most importantly I feel better in general: less aches

and stiffness

> in the morning, much,much less fatigue, get moving quicker instead of

the

> usual which is more like and 85 yr old, sleep better, mood better not

so

> hopeless and dark, not as befuddled with cloudy thinking, focus better

& think

> straighter , not as sensitive to temperature and less wild reactions

minute to

> minute to temperature, fine motor skills improved so I am able to sew

and

> write with comfort and dont drop things, sometimes I even perspire

which is a

> sign that my " normal " body detox process is trying to do its job, lung

> congestion gone,asthma gone, have been able to eliminate or cut in

half

> medications.

>

> A couple of other things that dont have to do with usual symptoms most

> people with CFS complain about but seem specific to me are: have been

> allergic to animals since early 20's but have always had them anyway.

> Normally if my cat scratches me I have extreme itchiness and redness

and if I

> pet a cat or dog or rabbit or horse and forget to wash my hands and

then rub

> my eyes, they get itchy and swollen, thats gone. I am 65 now so this

has been a

> problem for 50 yrs.

> The other thing I have and which the LDN has helped a bit with is 2

yrs ago I

> started getting these cystic like hard bumps on my upper arms, upper

back and

> scalp. I dont know what they are as I have never had any problem with

acne

> either during my youth or when my hormones went crazy through

menopause

> and I dont even know if thats what these bumps are, but I have had

some of

> the same ones for 2 yrs and they have not responded to any treatment,

from

> the Dr or over the counter. I have to wear long sleeves all summer!

> These have subsided as in no new ones and the ones I have are getting

> smaller. Still have them though and whats worse still have red scars

where

> they have gone. I guess its some detox thing but I have never seen

anything in

> people posting having this problem on Corts forum or any of the forums

or

> information I have read.

> Recently I got messed up on my LDN dosage and was measuring out my

dose

> incorrectly because of my poor math skills(that has not improved) and

had to

> stop the LDN for 3 days and begin all over and boy did I see in

technicolor

> what life is like without the LDN.

> I hope I can get more improvement on these lesions and scars so I can

wear

> short sleeves when it gets hot here but not holding my breath on that

one.

[Guest guest]

Dolores, I think you're giving me some encouragement to try this again.

I jumped in head first when the info came out on this protocol. I

started at 3.5 and it was after only a few days (and a few sleepless

nights) on this that I had that 'reborn' feeling. That only lasted one

day and then I crashed.

Having learned more since then, my guess is that continued dosing on

that amount shut down my endorphins altogether.

I did, later, try .5 and 1 ml but only for about 2 nights. I think your

protocol of gradual increases is definitly worth another shot. My only

hesitation is that I'll have such severe muscle pain, usually several

nights a week now, that I end up taking part or all of a percoset. I'm

afraid of having to mix the two, so it does hold me back.

Can you tell me what tests you will be looking for?

All the tests that my doc runs (whatever is available at Quest labs)

hardly ever show any abnormalities.

Thanks so much for sharing all this,

Sharon

> Its the only thing that has helped me. I will admit that because of a

lack of

> funds to have all sorts of tests done and see and endless stream of

dr's who

> know nothing, as well as being confused about which test to get and

which

> supplements to take its really the only thing I have tried. Its cheap

and I dont

> need a Dr to get it.

> I started about 5 mos ago at 0.05 for a week then 1mg for a week

> ,1.5,2,2.5,3,3.5......each time for a week. I never made it beyond

3.5 cause

> thats when I messed up the dosage and had to start over........now I

am up to

> 2mg.

> In a few months I will be on Medicare and I have heard that some of

the test I

> want to take will be covered. Looking forward to getting more info

about

> possible toxins and nutritional imbalances that will help me add more

to my

> protocol. But for now at least the LDN is giving my immune system

some help

> When I first started I had a few minor unpleasant reactions, like

disturbed

> sleep, headache, the usual CFS faux flu but it always worked itself

out. I just

> sat with each dosage increase until my body worked it out and I

stabilized. I

> think going slowly is very important. At least 1 week per each

increase.....more

> if you still get uncomfortable symptoms.

> I take it every night around 10 right before bed. I think I started

noticing

> improvements about the 2nd or 3rd week.

> Did you start low and go up slowly? Do you think you will try again

sometime.

> I know from being on the LDN group and Corts forum that

sometimes

> people just dont seem to do well with it.

> I have noticed that if I dont pace like I should, or am under enormous

> emotional stress I seem to spiral down, but bounce back easier.

Because my

> fatigue is so much less I sometimes take advantage and push more than

I

> should.....making up for lost time LOL

> If I go past a certain threshold , especially some type of detailed

sewing project

> or have some complex paperwork that requires lots of concentration the

CFS

> cognitive fog will slowly creep over me and soon everything looks the

same

> and I cant differentiate between one thing an another......it all

becomes a blur.

> But of course the threshold bar has been raised considerably by LDN.

> I really dont know if LDN will be able to get my immune system to work

well

> enough to actually give all the toxins and viruses and retroviruses

and yeasts

> and molds a good kick in the pants to the point that they cease to

exist or

> whether it just makes me feel better or exactly how it works it just

works.

> Been waiting 15 yrs to find something that would help me.

>

>

>

>

> >

> > Delores,

> >

> > This is an extremely encouraging report! (understatement of the

year)

> > Would you mind sharing your dosage, if it's daily, and how long it

took

> > you to realize it was working for you?

> >

> > I tried it for 4 months in '09 and had about 3-4 days where I felt I

was

> > reborn and then all the other days I was even worse than usual.

After

> > experimenting with different doses, down to 1/2 mg, then trying it

only

> > every few days, I finally gave up.