Re: Close to death -- VERY INSPIRING STORY!

[Guest guest]

Thanks Gail N!

That was truly the best medicine you could offer

" gettinghealthyto " , or any of us. Welcome to the board. I know I

speak for everyone when I say I hope you'll keep posting when

you can.

3-4 miles a day! Wow. I'd settle for 1 or 2 (without relapsing of

course!)

(for brain fog, have you tried Immune Pro RX, l-carnitine, or

Biomume Lo-Carb Whey? Will is using the latter, and I've used

both the Biommune (sp?) and Immune Pro Rx, and noticed a

definite improvement in mental clarity.)

d.

> > The bottom line is the NCF is hiding information. They do

have an

> idea of

> > what the main infectious agent is and they are not telling

> anyone. I realize

> > that cfs has many different layers...for some it's viral

> mostly...for some

> > its bacteria...for some it's a little of both. I seem to fall

> into the viral

> > category and I am matching the profile they are researching

right

> now

> > perfectly. Low stat1, low interferon gamma, low NK cell, low

> Th1. I am also close

> > to death.

> ====================

>

> Dear Gettinghealthy,

>

> Your post truly tugged at my heart and I wanted to repsond. I'm

not

> going to get into the pros and cons in the " Everyone Please

Read "

> debate. Rather I would like to share some things that have

helped me

> when I was so sick.

>

> To introduce myself (this is my second post to this list), I have

had

> cfids for the past 16 years. I've been lurking off and on this list

> for a while now. More off than on. I'm not truly sure about the

> rules because I truly haven't been following closely. I don't

even

> know who the moderator/s is/are so if I'm off-topic in any way,

> please let me know. Nevertheless, I do have a story to tell.

>

> My quest for health led me through allopathic medicine and

gradually

> gravitated to alternative medicine. I must say I was so

impressed

> with your cognative, writing, & spelling abilities. Also, the

> science knowledge you presented. Well, at least you knew the

big

> words. lol There is no way I could have done that when I was

near

> death. I still struggle a lot with mental abilities.

>

> Here is my story:

>

> In the early years of cfids when I first came down with it, I was

so

> sick I truly thought I would dy. The pain was so bad it felt like

my

> body was burning. The only relief I had was when I was able to

> sleep, which was very little. I would just lay in bed burning.

The

> weakness was like nothing I had experienced before. For the

first

> time I fully understood the saying, " I'm give out. " I just didn't

> think I had anything left. I was give out. I would lay in bed and

> tell myself, " Well, my kidneys are functioning. My lungs are

clear.

> If only my heart will keep beating. " I truly did not know if my

> heart had the energy to beat one mone beat. There was

certainly no

> way I had the energy to be on a computer at that time. If was

an

> effort just to breath. I had quit drinking water because it was

too

> hard to get up and go to the bathroom. When I did have to use

it, I

> would have to crawl as my legs just wouldn't hold me up.

>

> I'll try and make a long story as short as possible. That was

just

> to give a little background. The first thing I used to help save my

> life was pain pills. In the alternative field they will often say

> just so no to drugs. However, when one is so weak, I believe

having

> to fight the pain can kill you. The second thing was simply food.

At

> that time, I was also too weak to get up and get anything to eat.

> Eventually, my sister came and took me into her home and did

> everything for me. The food sustained my life. As time past,

the

> doctor put me on an antidepressant, doxapin I believe. I've

been off

> it for so long now, I'm really not sure. Anyway, the little pill

> helped numb the nerves and helped me get some sleep. It

also helped

> me be able to walk. Us see the illness had effected my

neurological

> systom so much that I didn't even have any reflexes below my

knees.

> Eventually, I was able to walk again.

>

> That was really the only medication the allopathic doctors gave

me.

> Eventually, I started delving into the alternative field as the other

> didn't seem to be increasing my health very much. Oh, I also

> forgot. They also put me on magnesium shots. This helps the

muscle

> spasms a lot. Later I learned that most all people with cfids

have a

> deficiency in calcium and magnesium. Apparently, are liver

does not

> detox like a normal persons'. I am so not a scientific person

and

> make no claims to understand anything about how this illness

effects

> the body. All I know that I really wanted to share are some

things

> that have helped me. They are mostly alternative stuff with the

> thinking that the body is ill due to an overload of toxins which

then

> causes the body to break down. Don't know if that's true or not.

I

> have found that even after all these years I still need certain

> supplements.

>

> I have also had very good results with Dr. Hulda 's liver

> cleans, homozon for bowel cleansing. Supplements that I find

I have

> to have are more the minerals than vitamins. Magnesium,

calcium,

> potassium. I also take fulvic minerals. Vitamins are C, B's,

B12

> injection, omega 3, digestive enzymes, colostrum, amino

acids, CS.

> And in the past year I have gotten into ozone saunas.

>

> I wish I had a magic bullet or pill, but I think you all know there

> is no such thing. It takes a lot of hard work. Changing your diet,

> which I am not the best person to talk about that. Still drink my

> coffee and I'm sure there are other habits I could adjust, but I've

> found the general detoxing however you can do it,

supplementing to

> build, and then doing something to increase the oxygen levels

are

> very beneficial. Oh yeah, I also use the chi machine and

rebound.

>

> These things might sound like small things but believe me it

has

> helped (not cured yet, but helped) me tremendously. I went

from not

> being able to walk, barely able to lift a fork to my mouth to put a

> bit of food in it, wondering if my heart had the enrgy to take one

> more beat, to literally walking anywhere from 1 to 4 miles

several

> days a week. I will have to break that up into morning and

evening,

> tho. Say in the morning I will walk anywhere from 1 to 2 miles

and

> again in the evening. I still have some pain. Some days are

more

> than other. Some days I don't have any. I am off all pain

> medication as well as off the antidepressant. I still have a lot

of

> trouble with my brain. I one time I was a fairly intelligent

> person. I still am, but am very much mentally impaired

causing me to

> really look stupid. Ya'll know the feeling I bet. <g>

>

> So that's it. I haven't even followed any support groups or know

> what they have found for treating this illness. When I read

anything

> scientific I go into brain spasms, but I am truly thankful for all

> the hard work that those who are trying to find a cause and

cure or

> treatment are doing. How they do it, I truly don't know. I've

never

> had the heart or felt the mental ability to do the research. IMO,

> they are to be amended. I applaud them all.

>

> I know the frustration this illness causes. I know the depth of

> suffering it causes. I know it intimately. There is hope. I was

> wanted to try an encourage you. When one is at death's door,

trying

> to figure out things is just too much. Sometimes a kind word

or a

> hug is the best medicine there is at that time. Even a look of

> compassion will go a long way. To know you are love can be

just the

> thing that can give you the will to live.

>

> Take care,

>

> Gail N. (the other Gail)

[Guest guest]

>

> Thanks Gail N!

>

> That was truly the best medicine you could offer

> " gettinghealthyto " , or any of us. Welcome to the board. I know I

> speak for everyone when I say I hope you'll keep posting when

> you can.

===========================

Hi D,

Thank you for the welcome. I have not tried what you mentioned for

brain fog. I will have to give it a try.

The reason I'm posting again after never posting until today is

because I checked out Gail's website and started reading the memorial

section. Now I must say while going through the things I've gone

through most of it was done in solitude. I've never gotten involved

with any organization before and don't know if I ever will. At the

time it just seemed like too much. However, after reading some

(actually only a few) of those that have died from this illness, I

decided I just could not keep quiet. Sometimes I forget because I

now (have although it must be paced) a funtional life, but the dark

times were very dark not only physically but spiritually as well

often with suicide thoughts. So if anything in my story might be

inspiring to any, I guess it's time I speak up. I still am not sure

what this forums' list rules allow. Are we only suppose to talk

about a pill that does this or that or can we share anything that

might help one cope with this illness? Let me know if I'm out of

line here.

I ended up staying with my sister for a couple of weeks, while she

fed me nurishing food. She sent me home with a porta potty so that I

wouldn't have to worry about bathroom trips and I had a crock pot

filled with hot water by the bed in which I would dip into and mix

the water with instant oatmeal for breakfast and a cup of soup for

lunch. In the evening my family members would come home and handle

dinner. The food was not particuarly nurishing but it did sustain my

life. My life was bedridden all the time. That lasted for several

months. Eventually I graduated (that's the way it felt like to me)

from the back bedroom to the livingroom couch. I called it a

graduation because in the bedroom it was isolated and dark. In the

livingroom there was a picture window by the couch and I could look

outside. And although I could not particapate in life, I now could

observe it. That was a big deal to me.

A lot of the stories on Gail's site talked about suicide due to not

being able to tolerate the pain. For me the lack of minerals seemed

to be a direct cause of pain especially the magnesium. At first I

took injections and then I found the orotates which are suppose to be

able to penetrate the cell. Another thing that also really help is

water. I know that sounds too simple to be taken seriously, but

often we are dehydrated. So I find drinking lots of water and taking

a little celtic sea salt (sea salt is full of minerals) with it truly

helps.

To help deal with the depression, I found the omega 3 or flax or

evening primrose oil helpful. It was when I was out of these that I

became suicidal.

For the strengthening the heart, I just recently starting doing the

Rath/ing protocol. It is taking anywhere from 3 to 6 grams of

vitamin C, l-lysine and proline 3 X daily. This is suppose to help

with blockages and strengthen the heart. What I found it does is

really strenthen my heart. I no longer get heart palpitations, and I

am able to do the walking now more aggressively as in exercising

rathering than strolling.

There seems to be quite a lot of different products, protocols, etc.

that promise cures, but I find most are helpful but haven't really

cured. The closest thing that really looks promising to me are the

ozone saunas. This is suppose to be one of the best and most

thorough ways of detoxing the body while energizing it at the same

time. It is only then that the immune system can do what it is

suppose to do. That, too, is a lot of hard work to detox.

Reading Gail's website hit me hard in my gut. The process has been

long and slow for me, but I have come so far. People have various

coping skills. If only one can hang on during the long hard winter

months of their life, spring will ultimately follow. Hang in there,

please.

We are having an exceptionally beautiful fall season where I live.

The leaves are just gorgeous and getting more and more beautiful all

the time as fall starts to exit out the door. A few weeks ago we

went up the the ski run (not to ski as it is off season) to take the

ski lift for a scenic view. As I was riding high above the mountains

it looked like it was raining all these difference colored leaves as

a gentle breaze blew, while the sun glistened down on everything

giving it a glittering, colored air of beauty. It was breathtakingly

beautiful and I thought back to the days when my house was a living

tomb. I was alive but not living and trapped in that house with only

the livingroom window letting me observe life passing me by. As we

stared decending off down the mountain and I had such a spacious view

of everything, I felt like I no longer was observing life on the

sidelines, rather I was now soaring.

Hang in there. One day you, too will soar!

Gail N.

>

>

[Guest guest]

Hi Gail,

I strongly encourage you to write to Gail Kansky, and ask if you

can submit your story for inclusion in their next newsletter. It is

EXACTLY what they need more of, in my humble opinion.

I think she said she accepts or invites submissions, so I hope

you'll consider giving it a try. (Again, maybe I see too much of the

negative in things, but their newsletter seems to me anyway to

be so full of doom and gloom, albeit real -- aside from the

research) that your story would help to counter that, and inspire a

lot of people.

Thanks again,

Dan

> >

> > Thanks Gail N!

> >

> > That was truly the best medicine you could offer

> > " gettinghealthyto " , or any of us. Welcome to the board. I

know I

> > speak for everyone when I say I hope you'll keep posting

when

> > you can.

> ===========================

>

> Hi D,

>

> Thank you for the welcome. I have not tried what you

mentioned for

> brain fog. I will have to give it a try.

>

> The reason I'm posting again after never posting until today is

> because I checked out Gail's website and started reading the

memorial

> section. Now I must say while going through the things I've

gone

> through most of it was done in solitude. I've never gotten

involved

> with any organization before and don't know if I ever will. At the

> time it just seemed like too much. However, after reading

some

> (actually only a few) of those that have died from this illness, I

> decided I just could not keep quiet. Sometimes I forget

because I

> now (have although it must be paced) a funtional life, but the

dark

> times were very dark not only physically but spiritually as well

> often with suicide thoughts. So if anything in my story might be

> inspiring to any, I guess it's time I speak up. I still am not sure

> what this forums' list rules allow. Are we only suppose to talk

> about a pill that does this or that or can we share anything that

> might help one cope with this illness? Let me know if I'm out

of

> line here.

>

> I ended up staying with my sister for a couple of weeks, while

she

> fed me nurishing food. She sent me home with a porta potty

so that I

> wouldn't have to worry about bathroom trips and I had a crock

pot

> filled with hot water by the bed in which I would dip into and mix

> the water with instant oatmeal for breakfast and a cup of soup

for

> lunch. In the evening my family members would come home

and handle

> dinner. The food was not particuarly nurishing but it did

sustain my

> life. My life was bedridden all the time. That lasted for several

> months. Eventually I graduated (that's the way it felt like to me)

> from the back bedroom to the livingroom couch. I called it a

> graduation because in the bedroom it was isolated and dark.

In the

> livingroom there was a picture window by the couch and I could

look

> outside. And although I could not particapate in life, I now

could

> observe it. That was a big deal to me.

>

> A lot of the stories on Gail's site talked about suicide due to not

> being able to tolerate the pain. For me the lack of minerals

seemed

> to be a direct cause of pain especially the magnesium. At first I

> took injections and then I found the orotates which are

suppose to be

> able to penetrate the cell. Another thing that also really help is

> water. I know that sounds too simple to be taken seriously, but

> often we are dehydrated. So I find drinking lots of water and

taking

> a little celtic sea salt (sea salt is full of minerals) with it truly

> helps.

>

> To help deal with the depression, I found the omega 3 or flax or

> evening primrose oil helpful. It was when I was out of these

that I

> became suicidal.

>

> For the strengthening the heart, I just recently starting doing the

> Rath/ing protocol. It is taking anywhere from 3 to 6 grams

of

> vitamin C, l-lysine and proline 3 X daily. This is suppose to

help

> with blockages and strengthen the heart. What I found it does

is

> really strenthen my heart. I no longer get heart palpitations,

and I

> am able to do the walking now more aggressively as in

exercising

> rathering than strolling.

>

> There seems to be quite a lot of different products, protocols,

etc.

> that promise cures, but I find most are helpful but haven't really

> cured. The closest thing that really looks promising to me are

the

> ozone saunas. This is suppose to be one of the best and

most

> thorough ways of detoxing the body while energizing it at the

same

> time. It is only then that the immune system can do what it is

> suppose to do. That, too, is a lot of hard work to detox.

>

> Reading Gail's website hit me hard in my gut. The process

has been

> long and slow for me, but I have come so far. People have

various

> coping skills. If only one can hang on during the long hard

winter

> months of their life, spring will ultimately follow. Hang in there,

> please.

>

> We are having an exceptionally beautiful fall season where I

live.

> The leaves are just gorgeous and getting more and more

beautiful all

> the time as fall starts to exit out the door. A few weeks ago we

> went up the the ski run (not to ski as it is off season) to take the

> ski lift for a scenic view. As I was riding high above the

mountains

> it looked like it was raining all these difference colored leaves

as

> a gentle breaze blew, while the sun glistened down on

everything

> giving it a glittering, colored air of beauty. It was breathtakingly

> beautiful and I thought back to the days when my house was a

living

> tomb. I was alive but not living and trapped in that house with

only

> the livingroom window letting me observe life passing me by.

As we

> stared decending off down the mountain and I had such a

spacious view

> of everything, I felt like I no longer was observing life on the

> sidelines, rather I was now soaring.

>

> Hang in there. One day you, too will soar!

>

> Gail N.

>

>

>

> >

> >