Re: LACK OF MEDICAL CARE IN VIOLATION OF HUMAN RIGHTS

[Guest guest]

: I completely agree with you. I was a county hospital nurse in Los

Angeles years ago and saw how non US citizens used our system expertly. One

fellow had long standing heart disease and had open heart surgery in our unit

and then disappeared to Saudi Arabia without paying a penny. He was on a

visitor's visa and we later found out he was quite wealthy. The taxpayers

pay these bills. And yet it seems that American citizens seemed to have the

worst problems getting care in the county system which is supposed to be

sliding scale. Until our government gets savvy with the way health care

money is spent and until our senators and congressmen see the outright

injustice of American citizens unable to get health care when they need it

most, then a change will come. I think if every citizen or legal resident in

the US made their senators or representatives aware that re-election depends

on how much progress each one makes in getting closer to a social medicine

concept. That every citizen deserves health care that is affordable and

accessible.

Only then will our form of government be true to its constitutional callings.

Donna

[Guest guest]

Getting an attorney to take this one on will be much more difficult than you

think. He may want money up front, as well.

Rita

[Guest guest]

You have brought up a very important point here, and something I have wondered

about for a long time, but didn't know there was something we could do about it.

Thanks for the info

[Guest guest]

The first point you all need to understand is ---- LYME DISEASE IS NOT A

PROBLEM!!!!

According to the current 'accepted' tests, lyme is curable with 28 days of

abx IF one is chronic...otherwise, 2 doses of doxy does it!!!

So, you have to have 100% PROOF that is does exist, that it is persistant

(meaning it is a continual infection for months and months, years and years)

AND that there is a definite cure!!! AINT GOING TO HAPPEN too soon

....BUT**** the good news???

YOU have **MAGNIFICENT** advocates out there fighting for you and you guys

don't even know it....such as Mrs. Pat , Pres. of the NJ Lyme Disease

Assoc. has done an AMAZING JOB of getting legislation passed. There is SOOO

much that is going on 'behind the scenes'....I know, I have attended many of

these functions and witnessed firsthand what is going on. How can you help??

KEEP EDUCATING AS MANY PEOPLE AS YOU CAN ABOUT THE **TRUTH*** ABOUT LYME.

PERIOD.

If anyone needs any info, plz contact me.

I just started a lyme info/support line in my house because my home phone has

been ringing off the hook all hours~!!

It is (732) 933-4011.

God bless you all...keep fighting.

sue in nj

sue massie

[Guest guest]

WAY TO GO, KIM!

Blessings,

CHris

> Hi Sue,

> I know we are all fighting in different ways. I have my own little

war going

> on and every chance I have I talk about Lyme and the fact that we

do not get

> health coverage and how doctors don;t believe us and on and on. I

am not

> afraid to speak out and I hope the little bit I said for national

TV about

> the way we are treated will be aired. It was supposed to be on

again this

> past Sat. and I received a call from CBS that it will be on next

Sat. I guess

> I will believe it when I see it. I am not sure exactly what will be

used, but

> I did tell my story about how I went undiagnosed for so long and

how I was

> told I was crazy and on and on like the rest of us. If there is

ever anything

> I can do more to help, I will, but I have to drag myself to work

each day to

> keep the lousy insurance I have, (even though it does not pay for

the lyme)

> but in case I have other problems which I do. So keep on trucking

and know

> there are others out there who care and who do open their mouths.

Hugs, KIM

[Guest guest]

Dear Sue,

You have been such a help to me, but I do need to clarify what I was

discussing in this original posting.

And please don't call me, " you all. " It's demeaning to all of us

who study and learn at our own rates and some with long breaks in

between - such as me - over 15 years. I understand your frustration,

but we all grow at our own pace, eh?

I understand what you are saying that Lyme Disease needs to be

understood within the medical community at large as a real and viable

illness with a severe need of funding for research on dx and tx! I

also understand that so many dedicated Lymies are doing great

legislative advocacy to promote the problems we are having with

funding and treatment and research with Lyme. I have known at

LDF since 1987. I am familiar with the folks " behind the scenes, " as

you put it.

I know how deeply involved you are and how many people you know and

that your geographical location puts you in an excellent position for

advocacy and education and to act as the kind helper for others,

which you, indeed, are!

All I was suggesting, was that a petition be signed by many of us who

have experienced inadequate health care, not only due to Lyme, but

due to the symptoms of Lyme - particularly the mental health issues

of panic and depression. It can be a double dose of " it's all in

your head! Take two anti depressants and call me in the morning. "

There are many of us who do NOT have insurance and cannot get

treatment. Personally, I am STILL waiting for the County I live in

to approve the IV Rocephin treatment, since the orals do not work for

me.

Donna, thank you for understanding the vein in which I was speaking,

which was looking at the larger picture of the horrible inadequacy of

health care in our country.

Sue, it's a slightly different - yet not to be disparaged,

perspective from the one you are so dedicated to.

In spite of having 3 co-infections, I do also know, from sitting on

the ground like a begging animal to weary to stand any longer outside

of social service offices at 6 in the morning before dawn, waiting

for a number to be given out at 7 am so I can be seen by a social

worker - and sitting in the Division of Children and Families Offices

(that's welfare) watching person after person be treated with the

least amount of decency and the least amount of credibility and

respect. And I have been in Health Care Clinics for the poor, where,

yes, indeed, Lyme Disease is not even acknowledged regardless of how

one has tested. I have had Doctors scream at me and I have calmed

them down. I have watched and am watching the horrific view that we

are all just " things " to be dispensed of - products of a throw-away

consciousness in our culture.

I didn't grow up like this. I don't want my children and

grandchildren to grow up with the concept that himan beings are

dispensible.

I find this treatment of human beings reprehensible. Furthermore, I

want to do something about it.

If the World Health Organization will accept a petition and pay

attention to it, which I am told they will, then this does not

undermine any advocacy work being done on Lyme Disease. It can only

help.

After all, I offer my own body to Columbia University for study.

That says a lot about my commitment about research for this disease.

If anyone is interested in signing or helping me draft a petition,

just e-mail me privately.

And BTW, Rita. I don't need an attorney to submit a petition!

=)

I hope I haven't offended anyone. My intention is simply to learn

and share and heal and fight. That wasn't my Life Long Plan, but

Lyme Disease has changed that plan!

Blessings to ALL,

> The first point you all need to understand is ---- LYME DISEASE IS

NOT A

> PROBLEM!!!!

[Guest guest]

Thanks Rita. And this was going to the World Health Organization?

Do you know who to contact to check the status of the petition(s)?

> Last I knew the Lyme Disease community had two petitions going. One

had

> 30,000? signatures.

>

> Rita

[Guest guest]

Dear ,

I certainly applaud your efforts, and am amazed at all you have

endured to obtain proper treatment. What a daunting task, on top of

such a chronic illness, to just be treated properly. I thought our

problems in obtaining insurance reimbursement was bad enough...this

is horrific.

I would certainly be interested in signing a petition and joining

with you in this effort. My advocacy/awareness efforts have centered

primarily around insurance issues since 1995. However, now we are on

Medicare only since January 12, 2002, so God only knows what lies

ahead for us with treatment.

There must be so many others out there who will be facing these same

issues shortly. I'd like to help.

Love ya,

Rose

><snip>

> Donna, thank you for understanding the vein in which I was

speaking,

> which was looking at the larger picture of the horrible inadequacy

of

> health care in our country.

>

> Sue, it's a slightly different - yet not to be disparaged,

> perspective from the one you are so dedicated to.

>

> In spite of having 3 co-infections, I do also know, from sitting on

> the ground like a begging animal to weary to stand any longer

outside

> of social service offices at 6 in the morning before dawn, waiting

> for a number to be given out at 7 am so I can be seen by a social

> worker - and sitting in the Division of Children and Families

Offices

> (that's welfare) watching person after person be treated with the

> least amount of decency and the least amount of credibility and

> respect. And I have been in Health Care Clinics for the poor,

where,

> yes, indeed, Lyme Disease is not even acknowledged regardless of

how

> one has tested. I have had Doctors scream at me and I have calmed

> them down. I have watched and am watching the horrific view that

we

> are all just " things " to be dispensed of - products of a throw-away

> consciousness in our culture.

>

> I didn't grow up like this. I don't want my children and

> grandchildren to grow up with the concept that himan beings are

> dispensible.

>

> I find this treatment of human beings reprehensible. Furthermore,

I

> want to do something about it.

>

> If the World Health Organization will accept a petition and pay

> attention to it, which I am told they will, then this does not

> undermine any advocacy work being done on Lyme Disease. It can

only

> help.

<snip>

>

> <snip>

> If anyone is interested in signing or helping me draft a petition,

> just e-mail me privately.

>

>

[Guest guest]

Hi Colleen,

It all started when I hired Flynn from Healthcare Advocates in Phila.

His name was given to me from the president of our lyme support group. I

called and for 99 dollars he said he would handle all the insurance bullshit.

Well, I was too sick to deal with it so I would just send him all the bills.

He would do all the work and the first year he got me back about 1500. 1500

more than I would have had. So I continued the next year with him and then

periodically he would call and we would talk and he asked me if I would talk

to this person or that person from TV or newspaper. None of which I heard

from. I interviewed with someone from the Walls Street Journal and did not

hear and then I interviewed with someone from the Lancaster Sunday Times and

that got printed. I told how I could not get coverage and so on and on. Then

he called and said they were doing a piece at CBS and would I be interested.

I said yes. A lot of people are afraid to speak out, but I am not. So the

story was mainly how Healthcare Advocates goes after insurance companies and

also negotiates with your doctors. I was interviewed for a good 10 mins or

more and tried to say as much as I could but only a few mins will be used so

I am not sure what will be on. It was supposed to be on last Sat after

postponing from the previous Sat and now it is to be on this Sat. The evening

news on Sat night on CBS National news at 6:30P.M. Eastern Time and the

anchor lady is Thallia Assuris.So I hope it airs this Sat and I hope they put

in some not so nice things I had to say about doctors, lyme disease and

insurance. So there you have it. Thanks for asking. KIM