Okay, to finish the story.....

[Guest guest]

Greetings, new friends. I wanted to finish my thoughts before I

started reading today or I would never be able to fit both in before

the sleep fest began. (definition of " sleep fest " : an extended

period of uncontrollable sleep usually occuring anywhere except the

bed. )

I guess one of the eye openers I've discovered is the fact that just

because we are not aware of something, does not mean it doesn't

exist. We are just in the circumstances where we can't avoid the

thing we do not want to exist.

I actually had a doctor say something that gave me this insight

about discovery. She said, " Oh, all diseases have been discovered so

you are chasing a lost cause if you think you have some disease that

hasn't been discovered. "

I wondered, do all doctor's have this attitude. Is that how they are

able to make it through the day not really trying to cure patients

but just becoming a dispensing station. That is what I call a

doctor's office, " Pharmaceutical dispensing stations " because

usually they have samples lined up and down the hallways to the exam

rooms, with their suppliers (salesmen) waiting up front. I call

hospitals, " chop shops " in the same light.

I remembered that I read somewhere just as I was beginning to get

sick, that before diabetes was discovered, those patients were

told it was all in their head. I remember thinking to myself, " Thank

goodness this is the 21st century and those kind of things don't

happen anymore. " Boy was I ever naive. Now I just wonder if

medical school keeps turning out the same doctors, just

reincarnated? Know what is harder than this illness, knowing that

nothing ever changes. That these doctor's didn't learn anything from

those diabetes patients going to their deaths thinking they were

just depressed.

I also read that in the Netherlands patients get diagnosed 30%

faster because the doctor's there don't dub a patient as depressed

right off the bat. I know that I lost a full year by believing the

doctors and following their depressed diagnosis, seeing psychiatrist

only to eventually conclude that I was not depressed, but sick. By

the time they have tried all the different antidepressants on you,

filling the company's coffers but wasting days of your life, it

usually takes a year or more to go through all of them.

I don't know if I mentioned that my youngest son inherited from me

the same undefined illness. He hasn't gone downhill as I have

probably because he is younger 21 and I monitor his activities so

that he doesn't overdue, etc. But it is a huge worry on my mind. I

never prayed for a miracle of wellness for myself, but rather that I

would live for as long as he needed me. I knew that if the doctors

treated him like they did me, he wouldn't have the drive to keep

pushing.

A conversation that sticks in my head was about six months ago with

a general practitioner. I was feeling rather frustrated that day

because it seems like all my appointments are the same. We pull out

the dead horse and pass it around taking turns beating it, only to

wind up putting it back in the closet. With me going home feeling

the same as when I arrived, used. On this day, I asked pointed

questions.

I told him what some of the other doctors told me and rather than

doubting my word in favor of his collegues, he believed me. It was

like the guard was relaxed and he could be candid with me. I first

asked how many people have to die when doctor's know that an

emerging disease is out there, but not defined enough to use it in

diagnosis. He looked up and took a deep breath.

He said, " Well in medical school we are taught that if one or two or

ten patients come in with symptoms like you describe, we are taught

to diagnosis 'depression.' I said well there are a lot more than

ten people that are sick like I am. He said well when the group has

grown and gets larger, but still undefined, we are taught to

classify it as " mass hysteria " It isn't until it becomes epidemic

in proportion that government, research and everyone decides that it

can't be avoided and money is finally spent to address it. "

I said, " So then you are telling me that I am a member of

the " forfeited generation " Because the process you described would

take at least a generation to evolve into an epidemic.

He must have known I had already concluded that time frame, He said

straight up... " Yes, at least a generation "

And with those symptoms, most doctors being trained in the same way

would spend as little time as possible on your case, wanting to

devote their time to cases they feel they can accomplish greater

good.

It all clearly was laid out before me. I was not going to get one

friggin' break in my lifetime. First regarding career it was being a

woman, then age. I overcome them to confront being blonde, so I

became a redhead Each crisis I somehow created a resolution. But now

being sick felt like the last straw. Especially since all my

previous resourcefulness still ended here. It was like for whatever

demographic group was being pounced upon at the moment, that is

where you found me....I remember thinking as I was digging in the

rubble of the house fire, " Job had nothing on me. " ( I wasn't even

sick then ) Little did I know it would get worse. One thing I

learned, NEVER, say that things can't get worse. Because they

can.......

I then knew that if I spent all this time and energy in giving my

children every opportunity for life only to leave them a world in

which they couldn't live was to qualify my life as a waste. It is

one thing to have to accept a fate less than desirable for yourself,

and quite another to accept it for your children.

Unless we are taken seriously NOW , our children will experience

this same fate, only in larger numbers. Just as there are clinical

trials to determine diseases, there are also clinical trials

to develop tests. These things take time, lots of time and $$.

My previous llmd doctor, said that the main problem with our illness

is adequate testing, describing how difficult the test

interpretation can be. I think that Igenex labs are owned by people

who had Lyme and knew what was needed. I also believe that central

sleep apnea is more prevalent than current literature shows. I just

don't think enough people are being tested. It took six years of my

symptoms for a doctor to ever mention sleep testing. Too long, much

too long. I have found that the medicine of sleep is just now being

accepted in the mainstream medicine. And since there are not very

many drugs to manipulate the brain (other than antidep.) they wind

up pushing the CPAP machines, looking to make money somewhere. I

simply amazes me at the functioning of the brain and still

aleopathic medicine only looks for tumors whenever brain disorder is

mentioned. As if there can't be any other problem. I think it is

just a difficult area to test on live people where the other

specialties don't have such a big risk with their experiments.

So they turn their heads and pretend that it doesn't exist. Or they

tell the patients that all diseases have been discovered.

I mentioned to doctor's the possibility of Lyme affecting the brain

as it would any other area of the body. After all, do we think there

is a metal plate at the neckline that prevents any and all

microorganisms from getting up there? And yet, not one doctor would

agree with me about the possibility. But then again, most won't

discuss Lyme either.

When my Lyme doctor left practice to write his findings, I thought

surely finding another lyme doctor wouldn't be difficult since I had

a positive blood test. I was wrong as many mainstream infectious

disease doctors consider the testing lab to be unaccredited.

Unbelievable....

Only recently did I get an infectious disease doctor to admit there

is such a thing as " chronic infections " most won't agree to that

either. If you can't get a doctor to agree in principal with me,

then how can I expect them to treat my illness aggressively? As the

time ticks on I have to accept that I may never find a doctor who

will agree to help me, but if I settle for a doctor who is just

patronizing me because he is punching a time clock I will have

failed not myself, but our children.

What I'd like to do is draft up some form letters that I can send

and others can send as well. I know how hard it is to rub two

thoughts together and often don't respond when I'd like just because

of the brain fog. Soon I'd like to have these on a web site that

I've already secure the domain name, www.thedeterminedspirit.com

My first letters will be in a unified effort to not pay any doctors

that don't provide a service. The letters would be to the doctors

and insurance company notifying that since the doctor didn't do any

diagnostic testing nor prescribe and remedies for my symptoms, nor

was an effective referral given that on that basis he did not

provide the service for which he committed to by agreeing to the

appointment. Something along those lines, you get my objective here,

right?

I would hope that eventually doctors would quit making appointments

in an effort to milk the insurance companies and wasting valuable

time when we need earlier diagnosis. Their staff asks every question

in the book when making the appointment, I feel like I'm filling out

a loan form. They know if you fit in the realm of this doctor's

practicing guidelines. Last year I had more non productive

appointments than I had ones that provided anything towards my

treatment.

What this has amplified to me is that we cannot let ourselves be

defined by these " circumstances " . It is an external issue that we

need to accept early on, merely circumstances. I just tell myself

daily, " I am not defined by the experiences I must accept at this

moment. " I may not always feel like " positive self talk " but I

feel it is imperative to make sure that I don't participate

in " negative self talk. " We must keep telling our selves and each

other so that we can rightfully demand better and more pro-active

care.

Now I never expected for just any specialty doctor and every

specialty doctor to know everything about every disease. But I did

believe that if I could get within the system to one doctor then

he/she would know where I needed to go. I do believe they know who

and where the best work is being done. Just as in every profession

they know their competition. I don't buy it when I say, " Okay,

doctor if you are not able to help me, then who is? " And the doctor

says that they don't know. I just don't buy it.

Sometimes this disease and subsequent journey that it takes us on

makes you question just about every belief you've ever had. I

realized recently that it really isn't terrorism that could destroy

our civilization as we know it. It is the apathy that silently grows

among us. Knowing right and wrong and not saying anything. I wonder

if it wasn't just Hitler who was the enemy of the Jewish people,

maybe the apathy of thousands of Germans.

Thank you for letting me get all of this out, I didn't realize how

much was pent up until my fingers hit the keyboard. I hope now to

put my energy into answering others and finding useful information

to post . I appreciate your patience in understanding my delay in

answering you. It just took all of my energy to write this. I found

it to be exhausting. But I found that by keeping it locked up inside

of me only brought on a underlying layer of anger. The internet and

forums have brought more good to me than all of the doctors put

together. IF they only would embrace it, they might learn something

too.

fondly,

Peg

[Guest guest]

Hi Peg,

I know I speak for most of the others on this board in saying that

we all can relate to your story, your frustrations, etc.. Believe me,

I could write a novel!

I'm not sure if you're aware of the Million Letter Campaign, but

two women got the idea (to bring attention to CFIDS and

fibromyalgia) about 9 months ago, and the word has spread

quite quickly. I'm not sure that I agree with all of their

suggestions for who to send them to (the First Lady?), but I

respectfully appreciate their efforts, and will definitely be writing

my 5 letters.

Here's the link for more info:

http://www.fms-help.com/letter.htm

Best regards,

Dan

p.s. (They state on some of the websites to write to Mike

Wallace, because he had CFIDS. Huh? I know he suffered

(suffers) from depression, but had never, ever heard of a CFIDS

connection. I mean the guy is 86-87 and still working!)

>

>

> Greetings, new friends. I wanted to finish my thoughts before I

> started reading today or I would never be able to fit both in

before

> the sleep fest began. (definition of " sleep fest " : an extended

> period of uncontrollable sleep usually occuring anywhere

except the

> bed. )

>

> I guess one of the eye openers I've discovered is the fact that

just

> because we are not aware of something, does not mean it

doesn't

> exist. We are just in the circumstances where we can't avoid

the

> thing we do not want to exist.

>

> I actually had a doctor say something that gave me this insight

> about discovery. She said, " Oh, all diseases have been

discovered so

> you are chasing a lost cause if you think you have some

disease that

> hasn't been discovered. "

>

> I wondered, do all doctor's have this attitude. Is that how they

are

> able to make it through the day not really trying to cure patients

> but just becoming a dispensing station. That is what I call a

> doctor's office, " Pharmaceutical dispensing stations " because

> usually they have samples lined up and down the hallways to

the exam

> rooms, with their suppliers (salesmen) waiting up front. I call

> hospitals, " chop shops " in the same light.

>

> I remembered that I read somewhere just as I was beginning

to get

> sick, that before diabetes was discovered, those patients

were

> told it was all in their head. I remember thinking to myself,

" Thank

> goodness this is the 21st century and those kind of things

don't

> happen anymore. " Boy was I ever naive. Now I just wonder if

> medical school keeps turning out the same doctors, just

> reincarnated? Know what is harder than this illness, knowing

that

> nothing ever changes. That these doctor's didn't learn anything

from

> those diabetes patients going to their deaths thinking they

were

> just depressed.

>

> I also read that in the Netherlands patients get diagnosed 30%

> faster because the doctor's there don't dub a patient as

depressed

> right off the bat. I know that I lost a full year by believing the

> doctors and following their depressed diagnosis, seeing

psychiatrist

> only to eventually conclude that I was not depressed, but sick.

By

> the time they have tried all the different antidepressants on you,

> filling the company's coffers but wasting days of your life, it

> usually takes a year or more to go through all of them.

>

> I don't know if I mentioned that my youngest son inherited from

me

> the same undefined illness. He hasn't gone downhill as I have

> probably because he is younger 21 and I monitor his activities

so

> that he doesn't overdue, etc. But it is a huge worry on my mind.

I

> never prayed for a miracle of wellness for myself, but rather

that I

> would live for as long as he needed me. I knew that if the

doctors

> treated him like they did me, he wouldn't have the drive to keep

> pushing.

>

> A conversation that sticks in my head was about six months

ago with

> a general practitioner. I was feeling rather frustrated that day

> because it seems like all my appointments are the same. We

pull out

> the dead horse and pass it around taking turns beating it, only

to

> wind up putting it back in the closet. With me going home

feeling

> the same as when I arrived, used. On this day, I asked pointed

> questions.

>

> I told him what some of the other doctors told me and rather

than

> doubting my word in favor of his collegues, he believed me. It

was

> like the guard was relaxed and he could be candid with me. I

first

> asked how many people have to die when doctor's know that

an

> emerging disease is out there, but not defined enough to use it

in

> diagnosis. He looked up and took a deep breath.

>

> He said, " Well in medical school we are taught that if one or

two or

> ten patients come in with symptoms like you describe, we are

taught

> to diagnosis 'depression.' I said well there are a lot more than

> ten people that are sick like I am. He said well when the group

has

> grown and gets larger, but still undefined, we are taught to

> classify it as " mass hysteria " It isn't until it becomes epidemic

> in proportion that government, research and everyone decides

that it

> can't be avoided and money is finally spent to address it. "

>

> I said, " So then you are telling me that I am a member of

> the " forfeited generation " Because the process you described

would

> take at least a generation to evolve into an epidemic.

>

> He must have known I had already concluded that time frame,

He said

> straight up... " Yes, at least a generation "

> And with those symptoms, most doctors being trained in the

same way

> would spend as little time as possible on your case, wanting to

> devote their time to cases they feel they can accomplish

greater

> good.

>

> It all clearly was laid out before me. I was not going to get one

> friggin' break in my lifetime. First regarding career it was being

a

> woman, then age. I overcome them to confront being blonde,

so I

> became a redhead Each crisis I somehow created a

resolution. But now

> being sick felt like the last straw. Especially since all my

> previous resourcefulness still ended here. It was like for

whatever

> demographic group was being pounced upon at the moment,

that is

> where you found me....I remember thinking as I was digging in

the

> rubble of the house fire, " Job had nothing on me. " ( I wasn't

even

> sick then ) Little did I know it would get worse. One thing I

> learned, NEVER, say that things can't get worse. Because they

> can.......

>

> I then knew that if I spent all this time and energy in giving my

> children every opportunity for life only to leave them a world in

> which they couldn't live was to qualify my life as a waste. It is

> one thing to have to accept a fate less than desirable for

yourself,

> and quite another to accept it for your children.

>

> Unless we are taken seriously NOW , our children will

experience

> this same fate, only in larger numbers. Just as there are

clinical

> trials to determine diseases, there are also clinical trials

> to develop tests. These things take time, lots of time and $$.

>

> My previous llmd doctor, said that the main problem with our

illness

> is adequate testing, describing how difficult the test

> interpretation can be. I think that Igenex labs are owned by

people

> who had Lyme and knew what was needed. I also believe that

central

> sleep apnea is more prevalent than current literature shows. I

just

> don't think enough people are being tested. It took six years of

my

> symptoms for a doctor to ever mention sleep testing. Too long,

much

> too long. I have found that the medicine of sleep is just now

being

> accepted in the mainstream medicine. And since there are not

very

> many drugs to manipulate the brain (other than antidep.) they

wind

> up pushing the CPAP machines, looking to make money

somewhere. I

> simply amazes me at the functioning of the brain and still

> aleopathic medicine only looks for tumors whenever brain

disorder is

> mentioned. As if there can't be any other problem. I think it is

> just a difficult area to test on live people where the other

> specialties don't have such a big risk with their experiments.

>

> So they turn their heads and pretend that it doesn't exist. Or

they

> tell the patients that all diseases have been discovered.

> I mentioned to doctor's the possibility of Lyme affecting the

brain

> as it would any other area of the body. After all, do we think

there

> is a metal plate at the neckline that prevents any and all

> microorganisms from getting up there? And yet, not one doctor

would

> agree with me about the possibility. But then again, most won't

> discuss Lyme either.

>

> When my Lyme doctor left practice to write his findings, I

thought

> surely finding another lyme doctor wouldn't be difficult since I

had

> a positive blood test. I was wrong as many mainstream

infectious

> disease doctors consider the testing lab to be unaccredited.

>

> Unbelievable....

>

> Only recently did I get an infectious disease doctor to admit

there

> is such a thing as " chronic infections " most won't agree to that

> either. If you can't get a doctor to agree in principal with me,

> then how can I expect them to treat my illness aggressively? As

the

> time ticks on I have to accept that I may never find a doctor who

> will agree to help me, but if I settle for a doctor who is just

> patronizing me because he is punching a time clock I will have

> failed not myself, but our children.

>

> What I'd like to do is draft up some form letters that I can send

> and others can send as well. I know how hard it is to rub two

> thoughts together and often don't respond when I'd like just

because

> of the brain fog. Soon I'd like to have these on a web site that

> I've already secure the domain name,

www.thedeterminedspirit.com

> My first letters will be in a unified effort to not pay any doctors

> that don't provide a service. The letters would be to the doctors

> and insurance company notifying that since the doctor didn't do

any

> diagnostic testing nor prescribe and remedies for my

symptoms, nor

> was an effective referral given that on that basis he did not

> provide the service for which he committed to by agreeing to

the

> appointment. Something along those lines, you get my

objective here,

> right?

>

> I would hope that eventually doctors would quit making

appointments

> in an effort to milk the insurance companies and wasting

valuable

> time when we need earlier diagnosis. Their staff asks every

question

> in the book when making the appointment, I feel like I'm filling

out

> a loan form. They know if you fit in the realm of this doctor's

> practicing guidelines. Last year I had more non productive

> appointments than I had ones that provided anything towards

my

> treatment.

>

> What this has amplified to me is that we cannot let ourselves

be

> defined by these " circumstances " . It is an external issue that

we

> need to accept early on, merely circumstances. I just tell

myself

> daily, " I am not defined by the experiences I must accept at this

> moment. " I may not always feel like " positive self talk " but I

> feel it is imperative to make sure that I don't participate

> in " negative self talk. " We must keep telling our selves and

each

> other so that we can rightfully demand better and more

pro-active

> care.

>

> Now I never expected for just any specialty doctor and every

> specialty doctor to know everything about every disease. But I

did

> believe that if I could get within the system to one doctor then

> he/she would know where I needed to go. I do believe they

know who

> and where the best work is being done. Just as in every

profession

> they know their competition. I don't buy it when I say, " Okay,

> doctor if you are not able to help me, then who is? " And the

doctor

> says that they don't know. I just don't buy it.

>

> Sometimes this disease and subsequent journey that it takes

us on

> makes you question just about every belief you've ever had. I

> realized recently that it really isn't terrorism that could destroy

> our civilization as we know it. It is the apathy that silently grows

> among us. Knowing right and wrong and not saying anything. I

wonder

> if it wasn't just Hitler who was the enemy of the Jewish people,

> maybe the apathy of thousands of Germans.

>

> Thank you for letting me get all of this out, I didn't realize how

> much was pent up until my fingers hit the keyboard. I hope now

to

> put my energy into answering others and finding useful

information

> to post . I appreciate your patience in understanding my delay

in

> answering you. It just took all of my energy to write this. I found

> it to be exhausting. But I found that by keeping it locked up

inside

> of me only brought on a underlying layer of anger. The internet

and

> forums have brought more good to me than all of the doctors

put

> together. IF they only would embrace it, they might learn

something

> too.

>

> fondly,

> Peg

[Guest guest]

WOW - what an incredible story. So unreal but knowing that me and so many others out there have gone thru the same experience it rings so true. This is such a facinating story of misery and hope combined together - I am overwhelmed. I am at a total loss for words and all the way thru reading your saga - i kept saying to myself this person cant be sick because you make so much sence and not even a need for spell check lol. All I can say is wow - cant add any thing too it as i am somewhat debilitated from these nasty nano - gram negative - pleopmorphic little bastards. Whoever u are Peg - u are one awsome individual. Please let it be know that I do wish i could write and convey such wonderful words of wisdom but my brainfog has overtaken me. So for now my new friend Peg - keep it coming and that i and others relish your thots and hope and pray for you and others here with such overwhelming and senseless misery. Ok better go before i make a fool more than i already am.

love the signoff

Fondly

Sam