New member to group, old member to illness..

[Guest guest]

I guess there is nothing like possibly stepping on toes the first

visit, right? I hope not. The information here has been very

valuable to me. Here goes.............

Greetings,

I am a new addition to this group and I shall make a promise. If you

can make it through all of my first post, then I promise to make all

my other posts a lot shorter. I am known for writing books though,

but I'm trying to minimize many things in my life, including

rambling.

I have an old aquaintence here, Penny. My, oh, my it is good to see

you. And boy is this group lucky to have your expertise and

experience as well as your commitment and your heart. Without

knowing a lick about me, Penny never hesitated to email me back when

I would write her in angst over some new development. For some

reason I believe our illness almost runs parallel, she is always one

step ahead of me though. Penny still has so much ability that I have

lost, I wish I knew three four years ago, what I know now.

I've been reading your words and experiences when I can. I only have

enough time each day to either read or write and I figured I needed

the reading. But I wanted to speak on a topic that I read here about

the manner in which we get treated by the doctors and medical

personnel. I made a list the other day, noting who I wanted to

comment to and the things I wanted to reply to, then I lost it.

First visit so let me list the four major and rare diseases that I

have officially been diagnosed with. I shall leave out all the

illnesses that although are valid and important ...but to me are

only secondary because of these 4 major ones. It is just that I can

only deal with so much,the biggest fire wins and right now the

issues like cardiomyopathy is having to wait. Also the severe

gingivitis because my other doc appts. take up all the wake time I

can get. I also will not be able to be a very chatty member because

the first illness I will list causes me to sleep up to 20 hours a

day, sometimes when I go into a sleep fest (I call them) it is round

the clock episode of intense sleep. But that may be a good thing

for everyone here. :~) So in essence what may feel like only a

week has passed by to me, actually a whole month is gone.

Lost .....to never get back again.

1. Central Sleep Apnea - Gosh, I don't know how to describe this

horror. There are two kinds of sleep apnea, the first kind is

obstructive sleep apnea also serious, but due to a muscle

interferring with their breathing. Central Sleep Apnea is very rare,

where there are lesions on the brainstem which is the control center

for breathing and heart beat. In other words, my brainstem is not

telling me to breath because of these lesions. I'm told that this

usually only happens after a stroke, which I haven't had. I believe

that I have/had a infection that went neuro on me, but the ducs are

not buying that one. Gee, wonder why? Up until three years ago, I

was insomniac, then went into complete sleep mode 24/7. Now I take a

dose of stimulants each day that would make a horse do the polka,

and I still sleep @ 16-18 hours. Since diagnosis I am having major

issues with the physical task of going to bed as the doctors have

painted a scenerio that I can't get out of my head, explaining that

I will die in my sleep. They only gave me +/-six months in January

2004, so I figure I am in " magic time " now, having exceeded their

timeframe.

2. Complete Endocrine Deficiency - meaning there is an overall wave

of dysfunction affecting my adrenal, my pituitary, my aldersterone

(vital) along with estrogen, progesterone, testosterone, and DHEA

among others, all severely low. Not even borderline in any case.

I believe that our endocrine has a key role in our immunity. Once

the immune system notes the invasion, it presents its defense,

getting beaten down from these constant chronic reactivate

infections, both viral and bacterial, fungal. The adrenal being a

gatekeeper also in the infection process pitches in raising our

fight or flight response. Does medicine not believe that to be

thrust into a physical stress that the endocrine puts us in during

infection, wouldn't' eventually wear the adrenal out? We go into

survival mode, and the endocrine system tries to help. If a pro-

active type person tries to push through things, because of course

no one beleives you are sick, then you must use a lot of adrenalin

to keep up the act. In my case, the first hint of trouble was in

2002 when the first cortisol tests show " very " low. I even went to

the Mayo clinic, (TX to MN) where after a week of poking, the touted

experts came up with " asthma " . WOW, what a revelation. They were

not concerned with my low cortisol, brushing it off on isolated

incident, being the first test given. Or even a " false positive, " I

heard mentioned. One way or the other, they were not going to dx

adrenal insufficiency. Heaven only knows why. But since that time I

have been on both cortisol, synthetic and natural and even ACTH

injections all at the whim of whatever doctor was seeing me.

Even addisons is rare, but usually the adrenal is the problem there,

whereas NONE of my endocrine glands will work,I have to supplement

everything. It even spooked Dr. Shoemaker (another story) who said

it was the worst case of endocrine failure that he had ever seen.

Now Dr. Shoemaker disses other doctors who refuse to take on chronic

patients and was so proud of himself that he hung in their one month

longer than most....before dropping me by phone. more later......

3. Acquired Immune Deficiency - I usually just tell people " immune

deficiency " so they don't freak out. This is being seen more and

more these days, an immune deficiency that has nothing to do with

AIDS or HIV, but meaning that the deficiency is acquired rather than

inherited.. Both with this immune deficiency and the endocrine

problem my main crisis has been not getting aggressive doctors to

help treat this. From 2000-2002 I had a great imunologist who did IV

infusions every couple of months with IgG and summa globulin etc.,

that kept me afloat until he went and retired on me. Seems like I

have to look for a new immunologist about twice a year. Then the new

one takes me off of the IgG to see how low I will go. Give me a

break ! Is that helping my immune system keep me alive, these wild

pendulum swings of immunity ? I think not. Now with the war, the

government hordes the gamma globulin. But I believe that the gamma

globulin I got in the IV and the shots I've taken until last year is

what kept me alive. They beg to differ and they are the " expert " ,

they say. My case is probably more severe than others here, but

maybe my experiences can help somewhat, and rare diseases aren't

exactly overrun with support groups.

What does it boil down to? The shortest route to the right answers?

For me and it sounds like others as well, the main core of the whole

dilemma has been how do we find the right kind of " supportive "

doctors without having to reinvent the wheel each and every time. Am

I close?

4. Last summer finally got Lyme tests back and contrary to

Shoemakers rants, it showed I did have Lyme. It conveyed pluses and

minuses on the Iginex but they were in key bands. But then my test

came back from Bowen in the high positive. Shoemaker wanted me to

fall into line with his study/protocol so bad, that he refused to

give me the Lyme tests. He even refused to call and give me a

referral to Dr. Harvey, a LLMD specialist in my state, although he

knew him personally. Bowen Labs said they even got video tape of

the little Bb suckers. " Life suckers " I call them. So I was on the

IV Rocephin from June until October when Dr. Harvey quit to write

his book (money bug get to him too?) and I went to see the person he

referred us to. This duc, she announced that she cut Dr. Harveys

patient load by two thirds declaring that none of us had Lyme.

But she wanted to keep the IV in me to use it for vitamins and IgG.

Seemed a bit extreme to keep a Hickman in for just monthly

treatment, but I kept thinking that she would figure it out that I

did have the Lyme. Spent two weeks in houston hospital get spinal

tap, all kinds of specialist, finally getting all diagnosis in one

place. But since it was out of town, now local doctors don't want to

just " agree " without their stamp of testing and $$$$$. See the

picture here?

Anyway, to shorten this a bit, the line got infected in December

when I went into a sleep fest. My husband is not the best in caring

for me when I am down. The line got infected.MRSA 6 " from the

heart. I was told that I was very close to the end. Actually I don't

remember anything falling into a quasa semi-coma from Dec. 15 to

Jan.1, when I sat upright in bed and said, " Take me to the

hospital. " Obviously ......Luckily ...not my time.

Did they take the IV line out? NOoooooooo. they immediatly started

the vancomyacin, stayed in the hospital over a week, then went home

on IV. I've been in the hospital entirely from the lack of adequate

treatment because none of the doctor's I have want to actually " do "

anything, and keep blaming every symptom on the " other " rare

diseases, telling me, " You'll have to see xx specialist about that,

I don't handle that area.

I have been ill almost seven years and because of doctors are either

quitting, retiring, leaving town, or just plain refusing to take me

as a patient, I have no real plan of action , nor any diagnosis that

more than two doctors can agree on. I need about six doctor and I

currently have three. While in the hospital another endo came to see

me. I found his remarks in my chart stating that he doubted I had

adrenal insufficiency. Come on now, just how long am I going to have

to " reprove " my diseases? If I see him, my other endo said that lack

of exercise was my problem and prescribed a pedometer (I left). But

I don't think I want to see this new one if he is going to be

jacking around with my meds, throwing his weight around. Often I

find new doctors will manipulate and waste the entire appointment

dissing the previous doctors. At first I was agast, but then

realized it was a manipulation tool so that the patient doesn't ask

any hard questions. Sometimes I can't get a word in edgewise. And

besides, if a prior doctor doesn't give me adequate treatment, is

that my fault? Then why do they imply that? I'm now weighing if it

is worth the price I will pay and the stress just to give this new

doc a peice of my mind over putting that in my file after seeing me

once for five minutes with no testing. He deserves to be knocked

down a notch, but am I able to pay that price to do it?

A month ago, while still on the vanco, my husb drove me to dallas to

see Lyme literate doctor Audrey Stein Goldberg. She should have

notified me before I went that she wasn't going to take my case as I

mail all my records several weeks ahead. She had gone over them and

told me in the first five minutes that she wouldn't take me. She

said that Lyme wasn't the worst of my problems and to not worry

about it for now. Whether it is lyme or some other infection, it is

causing the problem. How do you take care of those other diseases if

you don't remove the cause? She spends the rest of the appt. telling

me how to search on Google to try and find a world renowned doctor.

Then proceeded to tell me I could just call up the NIH and talk to

the immunology dept and make an appointment. Me , the patient, just

calls and makes an appointment. yeah, right

And being sick for six years, she thinks I have not figured Goggle

out already? We are not stupid cupee dolls, but educated,

professional people who have given up their lives in order to live.

I thought the other day, reflecting back over my life. I said, Hey,

just a few short years ago, you were well respected in this town,

presiding over a the local sales and marketing association, leading

the city in sales, even over the good ol boys. But besides the

success, it was the respect I was most proud of. And now I am

treated with the most disrespect I could ever imagine. How am I

different to deserve this?

You would not beleive how candid doctor's get when they think you

are a goner. They tell you things I'm sure they wish they hadn't

otherwise. I wonder, is it because they feel sorry for you and want

to throw you a bone as if you are one of them, sharing in this sorry

state of affairs, death? " So then why the disrespect, " I ask. They

don't want to like have such an ill patient who might die on their

watch. What is the liability? They ask I'm sure. They feel

pressured to take the case because it is their job,so they want to

blame something or someone. So they blame the patient. I've been

told, " Well, its your own fault, for drinking and partying and

smoking and all. " But yet I do none of those things, since HIV and

AIDS, every disease now has to have a " lifestyle " cause. I can

remember the day, the first day I was turned away by a doctor. I

cried all the way home and swore I would never see another doctor

again. It is a frequent occurence these days.

Please remember this.......I believe that the wrong message was

gotten from AIDS. I believe that it wasfor this universal message to

be sent to the world..

.........To put on alert, to give a " heads up " there are many

diseases and pathogens that can lie dormant in our bodies for many

years before reactivation. That just maybe they were wrong when they

told us that once you get sick from certain pathogens, you don't get

them again. Considering the medical world is now caught off guard,

unprepared for the upcoming onslaught of sick people.

They won't admit it - not even to save their own soul.

This is going to be the path of medicine in the next decade, a

society with a lack of immunity. Thus far it hasn't been profitable

enough to focus on it. WE have been convinced that the problems are

heart disease and cancer. Why? Because those illnesses have

confirmed, insurance approved and expensive treatment options to be

tried. Doesn't matter if they work.

Medicine is like all others, the business of making money. We are

ill simply for the business of keeping others employed. I believe

that is the way the medical community sees it. Truly, think about

it...... Why else have those " shot shops " gone up everywhere, under

the guise of " pain management " Because treatment with medications

only serves the pharmaceuticals, but the shot shops then serves the

income of many other people too. There are doctors who make you sign

a form agreeing to get the shots before they will prescribe any

medicine. If your endocrine system is in any way malfunctioning,

(but probably undiagnosed) the worst thing you can do is to get

steroid shots. So then everyone starts getting mad because you

aren't playing the game right. Then it becomes a pissin contest

instead of a doctor/ patient relationship. Believe me, the doctors

win. They hold all the cards and they know it.

So this is what we have done, our generation. We have taken a

society from our parents that had integrity, honor, and turned it

into a money hungry orgy. And I am here... alone, hardly seeing

another human being, not anyone except for a duc now and then and if

I order some toothpaste online then maybe I'll see the UPS man this

week. Hey, if its the second Tuesday of the month I get to see the

Schwann man. Yippee....

Our generation didn't overcome discrimination, we just shifted the

target, now the disabled are front and center to be ridiculed,

taunted and shamed into isolation, so they never have to deal with

us again.

Every doc so far has just danced around the problem , scratched

their heads and said, Gee, I think your case is too complicated for

me. " Sending me on my way to go find another doctor who will turn me

down first appointment also. 75% of my doctor visits are

unproductive first visits. I apologize if this letter sounds angry,

as that really isn't true. I just somehow want to tell the world

that I didn't have to be this sick. I just want to tell the world,

it will be the same for you, I just got here first. But you can do

something, don't wait until you are too ill to hold your own against

the bullying. My son also is ill with the same symptoms and dx as I

have. He is 21 and doesn't have the presence yet to get the kind of

treatment he needs. I have to hang around until I'm assured that he

can make it without my intervention on his behalf. He isn't' as ill

as I am , YET. And it is hard for a young man to make the changes he

must make. But I do understand. Someday I'll post the poem he wrote.

My heart breaks for him. At least I had 40 good years before

becoming ill, I've always been so grateful for that. That my

youngest child was at least a teen before I became " couch confined "

that is my term for bedridden.

I try to convince myself that surely all of this struggle serves

some purpose, but no matter how I try to I try to find some sanity

in all of this. That my life will not end with no meaning at all. I

can only think that sometimes there is just no reason at all for our

struggles, just no reason at all. But why is it just so impossible

for doctor's to be the advocate and support that patients like me

need during these times of turmoil? Why do they only see their

plight, as if it were so bad? They are still driving, still golfing,

still entertaining friends? They don't want to hear about the other

side of the world, they might actually feel some justified guilt.

No, just shame us away...seems to have similar traits to the

holocaust sometimes, I'm asking how this could actually shift the

way the world will evolve from this kind of mind set being tolerated

here. Is the goal to tolerate (treat) only healthy perfect people?

Is that what we are leaving our children to deal with? It is just

scarey when you get to the point I'm at knowing that I can do

nothing at all. Just watch as others like me get sicker and sicker.

I would have thought that medicine would have learned from past

mistakes when other diseases came into our lives. Several doctors

have admitted to me that it is taught in medical school that in any

emerging disease, the first generation is forfeited, so don't get

bogged down trying to save every patient. I didn't know that I hit

the jackpot when I pointedly asked them when they become vague and

non commited. " So you mean that I'm a member of the forfeited

generation? " They were shocked into candor thinking I knew someone

on the inside. Except one doctor I told that to, replied that I must

be mistaken because all diseases have been discovered already.

Jiminey cricket I have come across some real winnners. How about

it ? wanna try it.

Congratulations you have reached the end. Now, that wasn't so bad,

was it? Thank you I need to get this out............

Peg Lanelle....Peg or Lanelle, but just one name..

[Guest guest]

Hi Peg,

I read your entire message, and I am sad to say that I agree with every word of it. I feel the same way. And I have no optimistic suggestions either. I just wanted to let you know that I hear what you are saying, and I agree.

Sincerely,

[infections] New member to group, old member to illness..

I guess there is nothing like possibly stepping on toes the first visit, right? I hope not. The information here has been very valuable to me. Here goes.............Greetings,I am a new addition to this group and I shall make a promise. If you can make it through all of my first post, then I promise to make all my other posts a lot shorter. I am known for writing books though, but I'm trying to minimize many things in my life, including rambling. I have an old aquaintence here, Penny. My, oh, my it is good to see you. And boy is this group lucky to have your expertise and experience as well as your commitment and your heart. Without knowing a lick about me, Penny never hesitated to email me back when I would write her in angst over some new development. For some reason I believe our illness almost runs parallel, she is always one step ahead of me though. Penny still has so much ability that I have lost, I wish I knew three four years ago, what I know now. I've been reading your words and experiences when I can. I only have enough time each day to either read or write and I figured I needed the reading. But I wanted to speak on a topic that I read here about the manner in which we get treated by the doctors and medical personnel. I made a list the other day, noting who I wanted to comment to and the things I wanted to reply to, then I lost it. First visit so let me list the four major and rare diseases that I have officially been diagnosed with. I shall leave out all the illnesses that although are valid and important ...but to me are only secondary because of these 4 major ones. It is just that I can only deal with so much,the biggest fire wins and right now the issues like cardiomyopathy is having to wait. Also the severe gingivitis because my other doc appts. take up all the wake time I can get. I also will not be able to be a very chatty member because the first illness I will list causes me to sleep up to 20 hours a day, sometimes when I go into a sleep fest (I call them) it is round the clock episode of intense sleep. But that may be a good thing for everyone here. :~) So in essence what may feel like only a week has passed by to me, actually a whole month is gone. Lost .....to never get back again.1. Central Sleep Apnea - Gosh, I don't know how to describe this horror. There are two kinds of sleep apnea, the first kind is obstructive sleep apnea also serious, but due to a muscle interferring with their breathing. Central Sleep Apnea is very rare, where there are lesions on the brainstem which is the control center for breathing and heart beat. In other words, my brainstem is not telling me to breath because of these lesions. I'm told that this usually only happens after a stroke, which I haven't had. I believe that I have/had a infection that went neuro on me, but the ducs are not buying that one. Gee, wonder why? Up until three years ago, I was insomniac, then went into complete sleep mode 24/7. Now I take a dose of stimulants each day that would make a horse do the polka, and I still sleep @ 16-18 hours. Since diagnosis I am having major issues with the physical task of going to bed as the doctors have painted a scenerio that I can't get out of my head, explaining that I will die in my sleep. They only gave me +/-six months in January 2004, so I figure I am in "magic time" now, having exceeded their timeframe. 2. Complete Endocrine Deficiency - meaning there is an overall wave of dysfunction affecting my adrenal, my pituitary, my aldersterone (vital) along with estrogen, progesterone, testosterone, and DHEA among others, all severely low. Not even borderline in any case.I believe that our endocrine has a key role in our immunity. Once the immune system notes the invasion, it presents its defense, getting beaten down from these constant chronic reactivate infections, both viral and bacterial, fungal. The adrenal being a gatekeeper also in the infection process pitches in raising our fight or flight response. Does medicine not believe that to be thrust into a physical stress that the endocrine puts us in during infection, wouldn't' eventually wear the adrenal out? We go into survival mode, and the endocrine system tries to help. If a pro-active type person tries to push through things, because of course no one beleives you are sick, then you must use a lot of adrenalin to keep up the act. In my case, the first hint of trouble was in 2002 when the first cortisol tests show "very" low. I even went to the Mayo clinic, (TX to MN) where after a week of poking, the touted experts came up with "asthma". WOW, what a revelation. They were not concerned with my low cortisol, brushing it off on isolated incident, being the first test given. Or even a "false positive," I heard mentioned. One way or the other, they were not going to dx adrenal insufficiency. Heaven only knows why. But since that time I have been on both cortisol, synthetic and natural and even ACTH injections all at the whim of whatever doctor was seeing me. Even addisons is rare, but usually the adrenal is the problem there, whereas NONE of my endocrine glands will work,I have to supplement everything. It even spooked Dr. Shoemaker (another story) who said it was the worst case of endocrine failure that he had ever seen. Now Dr. Shoemaker disses other doctors who refuse to take on chronic patients and was so proud of himself that he hung in their one month longer than most....before dropping me by phone. more later......3. Acquired Immune Deficiency - I usually just tell people "immune deficiency" so they don't freak out. This is being seen more and more these days, an immune deficiency that has nothing to do with AIDS or HIV, but meaning that the deficiency is acquired rather than inherited.. Both with this immune deficiency and the endocrine problem my main crisis has been not getting aggressive doctors to help treat this. From 2000-2002 I had a great imunologist who did IV infusions every couple of months with IgG and summa globulin etc., that kept me afloat until he went and retired on me. Seems like I have to look for a new immunologist about twice a year. Then the new one takes me off of the IgG to see how low I will go. Give me a break ! Is that helping my immune system keep me alive, these wild pendulum swings of immunity ? I think not. Now with the war, the government hordes the gamma globulin. But I believe that the gamma globulin I got in the IV and the shots I've taken until last year is what kept me alive. They beg to differ and they are the "expert", they say. My case is probably more severe than others here, but maybe my experiences can help somewhat, and rare diseases aren't exactly overrun with support groups. What does it boil down to? The shortest route to the right answers? For me and it sounds like others as well, the main core of the whole dilemma has been how do we find the right kind of "supportive" doctors without having to reinvent the wheel each and every time. Am I close? 4. Last summer finally got Lyme tests back and contrary to Shoemakers rants, it showed I did have Lyme. It conveyed pluses and minuses on the Iginex but they were in key bands. But then my test came back from Bowen in the high positive. Shoemaker wanted me to fall into line with his study/protocol so bad, that he refused to give me the Lyme tests. He even refused to call and give me a referral to Dr. Harvey, a LLMD specialist in my state, although he knew him personally. Bowen Labs said they even got video tape of the little Bb suckers. "Life suckers" I call them. So I was on the IV Rocephin from June until October when Dr. Harvey quit to write his book (money bug get to him too?) and I went to see the person he referred us to. This duc, she announced that she cut Dr. Harveys patient load by two thirds declaring that none of us had Lyme. But she wanted to keep the IV in me to use it for vitamins and IgG. Seemed a bit extreme to keep a Hickman in for just monthly treatment, but I kept thinking that she would figure it out that I did have the Lyme. Spent two weeks in houston hospital get spinal tap, all kinds of specialist, finally getting all diagnosis in one place. But since it was out of town, now local doctors don't want to just "agree" without their stamp of testing and $$$$$. See the picture here? Anyway, to shorten this a bit, the line got infected in December when I went into a sleep fest. My husband is not the best in caring for me when I am down. The line got infected.MRSA 6 " from the heart. I was told that I was very close to the end. Actually I don't remember anything falling into a quasa semi-coma from Dec. 15 to Jan.1, when I sat upright in bed and said, "Take me to the hospital." Obviously ......Luckily ...not my time.Did they take the IV line out? NOoooooooo. they immediatly started the vancomyacin, stayed in the hospital over a week, then went home on IV. I've been in the hospital entirely from the lack of adequate treatment because none of the doctor's I have want to actually "do" anything, and keep blaming every symptom on the "other" rare diseases, telling me, "You'll have to see xx specialist about that, I don't handle that area. I have been ill almost seven years and because of doctors are either quitting, retiring, leaving town, or just plain refusing to take me as a patient, I have no real plan of action , nor any diagnosis that more than two doctors can agree on. I need about six doctor and I currently have three. While in the hospital another endo came to see me. I found his remarks in my chart stating that he doubted I had adrenal insufficiency. Come on now, just how long am I going to have to "reprove" my diseases? If I see him, my other endo said that lack of exercise was my problem and prescribed a pedometer (I left). But I don't think I want to see this new one if he is going to be jacking around with my meds, throwing his weight around. Often I find new doctors will manipulate and waste the entire appointment dissing the previous doctors. At first I was agast, but then realized it was a manipulation tool so that the patient doesn't ask any hard questions. Sometimes I can't get a word in edgewise. And besides, if a prior doctor doesn't give me adequate treatment, is that my fault? Then why do they imply that? I'm now weighing if it is worth the price I will pay and the stress just to give this new doc a peice of my mind over putting that in my file after seeing me once for five minutes with no testing. He deserves to be knocked down a notch, but am I able to pay that price to do it? A month ago, while still on the vanco, my husb drove me to dallas to see Lyme literate doctor Audrey Stein Goldberg. She should have notified me before I went that she wasn't going to take my case as I mail all my records several weeks ahead. She had gone over them and told me in the first five minutes that she wouldn't take me. She said that Lyme wasn't the worst of my problems and to not worry about it for now. Whether it is lyme or some other infection, it is causing the problem. How do you take care of those other diseases if you don't remove the cause? She spends the rest of the appt. telling me how to search on Google to try and find a world renowned doctor. Then proceeded to tell me I could just call up the NIH and talk to the immunology dept and make an appointment. Me , the patient, just calls and makes an appointment. yeah, rightAnd being sick for six years, she thinks I have not figured Goggle out already? We are not stupid cupee dolls, but educated, professional people who have given up their lives in order to live. I thought the other day, reflecting back over my life. I said, Hey, just a few short years ago, you were well respected in this town, presiding over a the local sales and marketing association, leading the city in sales, even over the good ol boys. But besides the success, it was the respect I was most proud of. And now I am treated with the most disrespect I could ever imagine. How am I different to deserve this?You would not beleive how candid doctor's get when they think you are a goner. They tell you things I'm sure they wish they hadn't otherwise. I wonder, is it because they feel sorry for you and want to throw you a bone as if you are one of them, sharing in this sorry state of affairs, death? "So then why the disrespect," I ask. They don't want to like have such an ill patient who might die on their watch. What is the liability? They ask I'm sure. They feel pressured to take the case because it is their job,so they want to blame something or someone. So they blame the patient. I've been told, "Well, its your own fault, for drinking and partying and smoking and all." But yet I do none of those things, since HIV and AIDS, every disease now has to have a "lifestyle" cause. I can remember the day, the first day I was turned away by a doctor. I cried all the way home and swore I would never see another doctor again. It is a frequent occurence these days. Please remember this.......I believe that the wrong message was gotten from AIDS. I believe that it wasfor this universal message to be sent to the world..........To put on alert, to give a "heads up" there are many diseases and pathogens that can lie dormant in our bodies for many years before reactivation. That just maybe they were wrong when they told us that once you get sick from certain pathogens, you don't get them again. Considering the medical world is now caught off guard, unprepared for the upcoming onslaught of sick people.They won't admit it - not even to save their own soul. This is going to be the path of medicine in the next decade, a society with a lack of immunity. Thus far it hasn't been profitable enough to focus on it. WE have been convinced that the problems are heart disease and cancer. Why? Because those illnesses have confirmed, insurance approved and expensive treatment options to be tried. Doesn't matter if they work. Medicine is like all others, the business of making money. We are ill simply for the business of keeping others employed. I believe that is the way the medical community sees it. Truly, think about it...... Why else have those "shot shops" gone up everywhere, under the guise of "pain management" Because treatment with medications only serves the pharmaceuticals, but the shot shops then serves the income of many other people too. There are doctors who make you sign a form agreeing to get the shots before they will prescribe any medicine. If your endocrine system is in any way malfunctioning,(but probably undiagnosed) the worst thing you can do is to get steroid shots. So then everyone starts getting mad because you aren't playing the game right. Then it becomes a pissin contest instead of a doctor/ patient relationship. Believe me, the doctors win. They hold all the cards and they know it. So this is what we have done, our generation. We have taken a society from our parents that had integrity, honor, and turned it into a money hungry orgy. And I am here... alone, hardly seeing another human being, not anyone except for a duc now and then and if I order some toothpaste online then maybe I'll see the UPS man this week. Hey, if its the second Tuesday of the month I get to see the Schwann man. Yippee....Our generation didn't overcome discrimination, we just shifted the target, now the disabled are front and center to be ridiculed, taunted and shamed into isolation, so they never have to deal with us again. Every doc so far has just danced around the problem , scratched their heads and said, Gee, I think your case is too complicated for me." Sending me on my way to go find another doctor who will turn me down first appointment also. 75% of my doctor visits are unproductive first visits. I apologize if this letter sounds angry, as that really isn't true. I just somehow want to tell the world that I didn't have to be this sick. I just want to tell the world, it will be the same for you, I just got here first. But you can do something, don't wait until you are too ill to hold your own against the bullying. My son also is ill with the same symptoms and dx as I have. He is 21 and doesn't have the presence yet to get the kind of treatment he needs. I have to hang around until I'm assured that he can make it without my intervention on his behalf. He isn't' as ill as I am , YET. And it is hard for a young man to make the changes he must make. But I do understand. Someday I'll post the poem he wrote. My heart breaks for him. At least I had 40 good years before becoming ill, I've always been so grateful for that. That my youngest child was at least a teen before I became "couch confined" that is my term for bedridden. I try to convince myself that surely all of this struggle serves some purpose, but no matter how I try to I try to find some sanity in all of this. That my life will not end with no meaning at all. I can only think that sometimes there is just no reason at all for our struggles, just no reason at all. But why is it just so impossible for doctor's to be the advocate and support that patients like me need during these times of turmoil? Why do they only see their plight, as if it were so bad? They are still driving, still golfing, still entertaining friends? They don't want to hear about the other side of the world, they might actually feel some justified guilt. No, just shame us away...seems to have similar traits to the holocaust sometimes, I'm asking how this could actually shift the way the world will evolve from this kind of mind set being tolerated here. Is the goal to tolerate (treat) only healthy perfect people? Is that what we are leaving our children to deal with? It is just scarey when you get to the point I'm at knowing that I can do nothing at all. Just watch as others like me get sicker and sicker. I would have thought that medicine would have learned from past mistakes when other diseases came into our lives. Several doctors have admitted to me that it is taught in medical school that in any emerging disease, the first generation is forfeited, so don't get bogged down trying to save every patient. I didn't know that I hit the jackpot when I pointedly asked them when they become vague and non commited. "So you mean that I'm a member of the forfeited generation?" They were shocked into candor thinking I knew someone on the inside. Except one doctor I told that to, replied that I must be mistaken because all diseases have been discovered already. Jiminey cricket I have come across some real winnners. How about it ? wanna try it. Congratulations you have reached the end. Now, that wasn't so bad, was it? Thank you I need to get this out............Peg Lanelle....Peg or Lanelle, but just one name..

[Guest guest]

Peg, I too hear every word you wrote. It is a very sad state of

affairs. My heart goes out to those that are willing to try ANYTHING,

trying to help themselves get even a little bit better. It is, in this

day and age, outrageous that we have to do our own Doctoring which may

or may not be good for us or even hasten the inevitable. When I read

some of the posts about some of the things people are willing to put

into their bodies, I cringe but I also understand having lived with 3-4

of these debilitating beasties for going on 14 years. Allie

[Guest guest]

You haven't stepped on anyone's toes - but I'd like to STOMP on your

doctors' toes!

God, our stories are so similar in many ways...and so damn dreadful.

I just want to thank you for sharing so much with us, this is the

kind of post people need to see to be reminded just how serious -

and shocking - our situations really are.

The central sleep apnea diagnosis seems terrifying and also to kind

of beg the question - what caused these lesions? Can they be healed

with medication or surgery? I'm sure you've made yourself hoarse

trying to get answers to those questions from doctors.

I was referred to an apnea trial by the dean of a medical school,

and turned down because I was too sick. I don't have the daytime

sleep, but spend long periods semiconscious, unable to perceive

time, and 'come to' with extreme disorientation.

I have neurolyme, but it appears to be progressing to something more

like MS, with brain volume loss and atrophy from my last MRI and

worsening vertigo, blankness, and disorientation, a long with a

whole zoo full of peripheral neuropathies.

Everything you say - ALL of it - about doctors, fear, denial,

depersonalized treatment...I just wish virtual hugs were actually

comforting, cuz we could both use it.

I hope that when you're able you'll return here, it's wonderful to

have you posting on I & I.

>

> I guess there is nothing like possibly stepping on toes the first

> visit, right? I hope not. The information here has been very

> valuable to me. Here goes.............

>

>

> Greetings,

>

> I am a new addition to this group and I shall make a promise. If

you

> can make it through all of my first post, then I promise to make

all

> my other posts a lot shorter. I am known for writing books though,

> but I'm trying to minimize many things in my life, including

> rambling.

>

> I have an old aquaintence here, Penny. My, oh, my it is good to

see

> you. And boy is this group lucky to have your expertise and

> experience as well as your commitment and your heart. Without

> knowing a lick about me, Penny never hesitated to email me back

when

> I would write her in angst over some new development. For some

> reason I believe our illness almost runs parallel, she is always

one

> step ahead of me though. Penny still has so much ability that I

have

> lost, I wish I knew three four years ago, what I know now.

>

> I've been reading your words and experiences when I can. I only

have

> enough time each day to either read or write and I figured I

needed

> the reading. But I wanted to speak on a topic that I read here

about

> the manner in which we get treated by the doctors and medical

> personnel. I made a list the other day, noting who I wanted to

> comment to and the things I wanted to reply to, then I lost it.

> First visit so let me list the four major and rare diseases that

I

> have officially been diagnosed with. I shall leave out all the

> illnesses that although are valid and important ...but to me are

> only secondary because of these 4 major ones. It is just that I

can

> only deal with so much,the biggest fire wins and right now the

> issues like cardiomyopathy is having to wait. Also the severe

> gingivitis because my other doc appts. take up all the wake time I

> can get. I also will not be able to be a very chatty member

because

> the first illness I will list causes me to sleep up to 20 hours a

> day, sometimes when I go into a sleep fest (I call them) it is

round

> the clock episode of intense sleep. But that may be a good thing

> for everyone here. :~) So in essence what may feel like only a

> week has passed by to me, actually a whole month is gone.

> Lost .....to never get back again.

>

> 1. Central Sleep Apnea - Gosh, I don't know how to describe this

> horror. There are two kinds of sleep apnea, the first kind is

> obstructive sleep apnea also serious, but due to a muscle

> interferring with their breathing. Central Sleep Apnea is very

rare,

> where there are lesions on the brainstem which is the control

center

> for breathing and heart beat. In other words, my brainstem is not

> telling me to breath because of these lesions. I'm told that this

> usually only happens after a stroke, which I haven't had. I

believe

> that I have/had a infection that went neuro on me, but the ducs

are

> not buying that one. Gee, wonder why? Up until three years ago, I

> was insomniac, then went into complete sleep mode 24/7. Now I take

a

> dose of stimulants each day that would make a horse do the polka,

> and I still sleep @ 16-18 hours. Since diagnosis I am having major

> issues with the physical task of going to bed as the doctors have

> painted a scenerio that I can't get out of my head, explaining

that

> I will die in my sleep. They only gave me +/-six months in January

> 2004, so I figure I am in " magic time " now, having exceeded their

> timeframe.

>

> 2. Complete Endocrine Deficiency - meaning there is an overall

wave

> of dysfunction affecting my adrenal, my pituitary, my

aldersterone

> (vital) along with estrogen, progesterone, testosterone, and DHEA

> among others, all severely low. Not even borderline in any case.

> I believe that our endocrine has a key role in our immunity. Once

> the immune system notes the invasion, it presents its defense,

> getting beaten down from these constant chronic reactivate

> infections, both viral and bacterial, fungal. The adrenal being a

> gatekeeper also in the infection process pitches in raising our

> fight or flight response. Does medicine not believe that to be

> thrust into a physical stress that the endocrine puts us in during

> infection, wouldn't' eventually wear the adrenal out? We go

into

> survival mode, and the endocrine system tries to help. If a pro-

> active type person tries to push through things, because of course

> no one beleives you are sick, then you must use a lot of adrenalin

> to keep up the act. In my case, the first hint of trouble was in

> 2002 when the first cortisol tests show " very " low. I even went to

> the Mayo clinic, (TX to MN) where after a week of poking, the

touted

> experts came up with " asthma " . WOW, what a revelation. They were

> not concerned with my low cortisol, brushing it off on isolated

> incident, being the first test given. Or even a " false positive, "

I

> heard mentioned. One way or the other, they were not going to dx

> adrenal insufficiency. Heaven only knows why. But since that time

I

> have been on both cortisol, synthetic and natural and even ACTH

> injections all at the whim of whatever doctor was seeing me.

> Even addisons is rare, but usually the adrenal is the problem

there,

> whereas NONE of my endocrine glands will work,I have to supplement

> everything. It even spooked Dr. Shoemaker (another story) who said

> it was the worst case of endocrine failure that he had ever seen.

> Now Dr. Shoemaker disses other doctors who refuse to take on

chronic

> patients and was so proud of himself that he hung in their one

month

> longer than most....before dropping me by phone. more later......

>

> 3. Acquired Immune Deficiency - I usually just tell people " immune

> deficiency " so they don't freak out. This is being seen more and

> more these days, an immune deficiency that has nothing to do with

> AIDS or HIV, but meaning that the deficiency is acquired rather

than

> inherited.. Both with this immune deficiency and the endocrine

> problem my main crisis has been not getting aggressive doctors to

> help treat this. From 2000-2002 I had a great imunologist who did

IV

> infusions every couple of months with IgG and summa globulin etc.,

> that kept me afloat until he went and retired on me. Seems like I

> have to look for a new immunologist about twice a year. Then the

new

> one takes me off of the IgG to see how low I will go. Give me a

> break ! Is that helping my immune system keep me alive, these wild

> pendulum swings of immunity ? I think not. Now with the war, the

> government hordes the gamma globulin. But I believe that the gamma

> globulin I got in the IV and the shots I've taken until last year

is

> what kept me alive. They beg to differ and they are the " expert " ,

> they say. My case is probably more severe than others here, but

> maybe my experiences can help somewhat, and rare diseases aren't

> exactly overrun with support groups.

> What does it boil down to? The shortest route to the right

answers?

> For me and it sounds like others as well, the main core of the

whole

> dilemma has been how do we find the right kind of " supportive "

> doctors without having to reinvent the wheel each and every time.

Am

> I close?

>

> 4. Last summer finally got Lyme tests back and contrary to

> Shoemakers rants, it showed I did have Lyme. It conveyed pluses

and

> minuses on the Iginex but they were in key bands. But then my test

> came back from Bowen in the high positive. Shoemaker wanted me to

> fall into line with his study/protocol so bad, that he refused to

> give me the Lyme tests. He even refused to call and give me a

> referral to Dr. Harvey, a LLMD specialist in my state, although he

> knew him personally. Bowen Labs said they even got video tape of

> the little Bb suckers. " Life suckers " I call them. So I was on the

> IV Rocephin from June until October when Dr. Harvey quit to write

> his book (money bug get to him too?) and I went to see the person

he

> referred us to. This duc, she announced that she cut Dr. Harveys

> patient load by two thirds declaring that none of us had Lyme.

>

> But she wanted to keep the IV in me to use it for vitamins and

IgG.

> Seemed a bit extreme to keep a Hickman in for just monthly

> treatment, but I kept thinking that she would figure it out that I

> did have the Lyme. Spent two weeks in houston hospital get spinal

> tap, all kinds of specialist, finally getting all diagnosis in one

> place. But since it was out of town, now local doctors don't want

to

> just " agree " without their stamp of testing and $$$$$. See the

> picture here?

>

> Anyway, to shorten this a bit, the line got infected in December

> when I went into a sleep fest. My husband is not the best in

caring

> for me when I am down. The line got infected.MRSA 6 " from the

> heart. I was told that I was very close to the end. Actually I

don't

> remember anything falling into a quasa semi-coma from Dec. 15 to

> Jan.1, when I sat upright in bed and said, " Take me to the

> hospital. " Obviously ......Luckily ...not my time.

> Did they take the IV line out? NOoooooooo. they immediatly

started

> the vancomyacin, stayed in the hospital over a week, then went

home

> on IV. I've been in the hospital entirely from the lack of

adequate

> treatment because none of the doctor's I have want to

actually " do "

> anything, and keep blaming every symptom on the " other " rare

> diseases, telling me, " You'll have to see xx specialist about

that,

> I don't handle that area.

>

> I have been ill almost seven years and because of doctors are

either

> quitting, retiring, leaving town, or just plain refusing to take

me

> as a patient, I have no real plan of action , nor any diagnosis

that

> more than two doctors can agree on. I need about six doctor and I

> currently have three. While in the hospital another endo came to

see

> me. I found his remarks in my chart stating that he doubted I had

> adrenal insufficiency. Come on now, just how long am I going to

have

> to " reprove " my diseases? If I see him, my other endo said that

lack

> of exercise was my problem and prescribed a pedometer (I left).

But

> I don't think I want to see this new one if he is going to be

> jacking around with my meds, throwing his weight around. Often I

> find new doctors will manipulate and waste the entire appointment

> dissing the previous doctors. At first I was agast, but then

> realized it was a manipulation tool so that the patient doesn't

ask

> any hard questions. Sometimes I can't get a word in edgewise. And

> besides, if a prior doctor doesn't give me adequate treatment, is

> that my fault? Then why do they imply that? I'm now weighing if it

> is worth the price I will pay and the stress just to give this new

> doc a peice of my mind over putting that in my file after seeing

me

> once for five minutes with no testing. He deserves to be knocked

> down a notch, but am I able to pay that price to do it?

>

> A month ago, while still on the vanco, my husb drove me to dallas

to

> see Lyme literate doctor Audrey Stein Goldberg. She should have

> notified me before I went that she wasn't going to take my case as

I

> mail all my records several weeks ahead. She had gone over them

and

> told me in the first five minutes that she wouldn't take me. She

> said that Lyme wasn't the worst of my problems and to not worry

> about it for now. Whether it is lyme or some other infection, it

is

> causing the problem. How do you take care of those other diseases

if

> you don't remove the cause? She spends the rest of the appt.

telling

> me how to search on Google to try and find a world renowned

doctor.

> Then proceeded to tell me I could just call up the NIH and talk to

> the immunology dept and make an appointment. Me , the patient,

just

> calls and makes an appointment. yeah, right

> And being sick for six years, she thinks I have not figured Goggle

> out already? We are not stupid cupee dolls, but educated,

> professional people who have given up their lives in order to

live.

>

> I thought the other day, reflecting back over my life. I said,

Hey,

> just a few short years ago, you were well respected in this town,

> presiding over a the local sales and marketing association,

leading

> the city in sales, even over the good ol boys. But besides the

> success, it was the respect I was most proud of. And now I am

> treated with the most disrespect I could ever imagine. How am I

> different to deserve this?

>

> You would not beleive how candid doctor's get when they think you

> are a goner. They tell you things I'm sure they wish they hadn't

> otherwise. I wonder, is it because they feel sorry for you and

want

> to throw you a bone as if you are one of them, sharing in this

sorry

> state of affairs, death? " So then why the disrespect, " I ask.

They

> don't want to like have such an ill patient who might die on their

> watch. What is the liability? They ask I'm sure. They feel

> pressured to take the case because it is their job,so they want to

> blame something or someone. So they blame the patient. I've been

> told, " Well, its your own fault, for drinking and partying and

> smoking and all. " But yet I do none of those things, since HIV

and

> AIDS, every disease now has to have a " lifestyle " cause. I can

> remember the day, the first day I was turned away by a doctor. I

> cried all the way home and swore I would never see another doctor

> again. It is a frequent occurence these days.

>

> Please remember this.......I believe that the wrong message was

> gotten from AIDS. I believe that it wasfor this universal message

to

> be sent to the world..

>

> ........To put on alert, to give a " heads up " there are many

> diseases and pathogens that can lie dormant in our bodies for many

> years before reactivation. That just maybe they were wrong when

they

> told us that once you get sick from certain pathogens, you don't

get

> them again. Considering the medical world is now caught off guard,

> unprepared for the upcoming onslaught of sick people.

>

> They won't admit it - not even to save their own soul.

>

>

> This is going to be the path of medicine in the next decade, a

> society with a lack of immunity. Thus far it hasn't been

profitable

> enough to focus on it. WE have been convinced that the problems

are

> heart disease and cancer. Why? Because those illnesses have

> confirmed, insurance approved and expensive treatment options to

be

> tried. Doesn't matter if they work.

>

> Medicine is like all others, the business of making money. We are

> ill simply for the business of keeping others employed. I believe

> that is the way the medical community sees it. Truly, think about

> it...... Why else have those " shot shops " gone up everywhere,

under

> the guise of " pain management " Because treatment with medications

> only serves the pharmaceuticals, but the shot shops then serves

the

> income of many other people too. There are doctors who make you

sign

> a form agreeing to get the shots before they will prescribe any

> medicine. If your endocrine system is in any way malfunctioning,

> (but probably undiagnosed) the worst thing you can do is to get

> steroid shots. So then everyone starts getting mad because you

> aren't playing the game right. Then it becomes a pissin contest

> instead of a doctor/ patient relationship. Believe me, the doctors

> win. They hold all the cards and they know it.

>

> So this is what we have done, our generation. We have taken a

> society from our parents that had integrity, honor, and turned it

> into a money hungry orgy. And I am here... alone, hardly seeing

> another human being, not anyone except for a duc now and then and

if

> I order some toothpaste online then maybe I'll see the UPS man

this

> week. Hey, if its the second Tuesday of the month I get to see the

> Schwann man. Yippee....

> Our generation didn't overcome discrimination, we just shifted the

> target, now the disabled are front and center to be ridiculed,

> taunted and shamed into isolation, so they never have to deal with

> us again.

>

>

> Every doc so far has just danced around the problem , scratched

> their heads and said, Gee, I think your case is too complicated

for

> me. " Sending me on my way to go find another doctor who will turn

me

> down first appointment also. 75% of my doctor visits are

> unproductive first visits. I apologize if this letter sounds

angry,

> as that really isn't true. I just somehow want to tell the world

> that I didn't have to be this sick. I just want to tell the world,

> it will be the same for you, I just got here first. But you can

do

> something, don't wait until you are too ill to hold your own

against

> the bullying. My son also is ill with the same symptoms and dx as

I

> have. He is 21 and doesn't have the presence yet to get the kind

of

> treatment he needs. I have to hang around until I'm assured that

he

> can make it without my intervention on his behalf. He isn't' as

ill

> as I am , YET. And it is hard for a young man to make the changes

he

> must make. But I do understand. Someday I'll post the poem he

wrote.

> My heart breaks for him. At least I had 40 good years before

> becoming ill, I've always been so grateful for that. That my

> youngest child was at least a teen before I became " couch

confined "

> that is my term for bedridden.

>

> I try to convince myself that surely all of this struggle serves

> some purpose, but no matter how I try to I try to find some sanity

> in all of this. That my life will not end with no meaning at all.

I

> can only think that sometimes there is just no reason at all for

our

> struggles, just no reason at all. But why is it just so

impossible

> for doctor's to be the advocate and support that patients like me

> need during these times of turmoil? Why do they only see their

> plight, as if it were so bad? They are still driving, still

golfing,

> still entertaining friends? They don't want to hear about the

other

> side of the world, they might actually feel some justified guilt.

> No, just shame us away...seems to have similar traits to the

> holocaust sometimes, I'm asking how this could actually shift the

> way the world will evolve from this kind of mind set being

tolerated

> here. Is the goal to tolerate (treat) only healthy perfect people?

> Is that what we are leaving our children to deal with? It is just

> scarey when you get to the point I'm at knowing that I can do

> nothing at all. Just watch as others like me get sicker and

sicker.

> I would have thought that medicine would have learned from past

> mistakes when other diseases came into our lives. Several doctors

> have admitted to me that it is taught in medical school that in

any

> emerging disease, the first generation is forfeited, so don't get

> bogged down trying to save every patient. I didn't know that I hit

> the jackpot when I pointedly asked them when they become vague and

> non commited. " So you mean that I'm a member of the forfeited

> generation? " They were shocked into candor thinking I knew someone

> on the inside. Except one doctor I told that to, replied that I

must

> be mistaken because all diseases have been discovered already.

> Jiminey cricket I have come across some real winnners. How about

> it ? wanna try it.

>

> Congratulations you have reached the end. Now, that wasn't so bad,

> was it? Thank you I need to get this out............

> Peg Lanelle....Peg or Lanelle, but just one name..