Re: Not Short But Sent Anyway/Mass Mailing MSNBC

[Guest guest]

beth,

I am sure that we are on the threshold of something BIG...our stories

are getting out there...and there is some promising new research. We're

going to blow this thing wide open.

Although I couldn't participate in the mass mailing (too sick), I do

write to the TV stations when they air a Lyme story.

It might help if all of you would write a quick note to Dr. Max Gomez of

Newschannel 4 in N.Y. He recently did a report on the Lymerix vaccine,

and how it was being approved for children. I made him aware of the

controversary surrounding it, and also made him aware of the problems

that we have encountered due to Steere.

He can be reached at :

http://www.msnbc.com

Scroll down to the bottom of the page and highlight " write us "

Feel Better {{{beth}}},

Joan NY

1st Known Deer Tick Bites & Sx: '85

1st (Neg): '89

Cont'd Sx, Neg. s & No LD Dx: '90-'99 1st WB: 4+ Specific Bands:

4/99

Late Neuro-LD Dx: 6/99

From: beth <elsbeth@...>

, Barbara, Rosekiana, Vicki, Marta, Sharon, Joan, Reid, Kay,

Bernadette, Lovey, Connie, Sue, Robynn and all of you out there whose names

just don't fall off my fingers on the list who's hearts seem to be still

strong and loving despite everything,

It's the end of a long day typing at this thing and I realized in reading

your posts this evening that after all this, I haven't really stopped to

feel how awful this whole being sick, misdiagnosed and mistreated has been

for me. The personal devastation of 15 years undiagnosed illness, wrecking

a marriage and a promising career, leaving me without a shred of security,

trying to make family w/ my son by the skin of my teeth. My letters to the

media et. al. are distant . I don't say much about my own story. I think of

myself as " lucky " to have finally gotten a diagnosis and a doctor very

willing to treat me. I don't mention what's happened over these years

because it's not dramatic but it's quietly tragic. I don't feel like I can

blame anyone for not figuring out what's wrong w/ me sooner. My symptoms

were too subtle until this year but not subtle enough to ruin so many

things.

I'm too tired to write more but I appreciate the raw pain that some of you

express. I feel it too. Suicide crosses my mind also. I can't/won't ever

because of my son, family and friends. But things get so black sometimes

that it's the only comforting thought to have. The thought always passes. I

also feel glimmers of hope that I can make something of all this,

particularly on days like today when we get our shit together to yell for

help. Hope some of them heard.

With love, tears and hugs for you all,

beth

Send to -Offtopiconelist messages unrelated to lyme, please.

/archive/lyme-aid

/archives.cgi/Lyme-Documents

To unsubscribe, send email to -unsubscribeonelist

You may substitute " subscribe " , or " digest " or " normal " for

the word " unsubscribe " ( " normal " is the opposite of " digest " ). Leave blank both

the message and subject header.

[Guest guest]

I am sure that we are on the threshold of something BIG...our stories

are getting out there...and there is some promising new research. We're

going to blow this thing wide open.<<<<

i think we NEED to get on the news.

what can we do that will be sensational enough to get them interested?

kay

[Guest guest]

Kay,

I wish I could think of something sensational, beside something like

suicide. No, no I would never do it, just starting to feel hopeless despite

our promising response. If anyone has an idea, lets do it. What about that

Mass March we started to plan on D.C. and changed to CDC in Atlanta? Maybe

we should start planning that real soon. And maybe we need to do a few, East

Coast, West Coast, Central, Northern, etc. all on the same day.

Vicki

>From: " Kay " <b10g7@...>

>

>>

>what can we do that will be sensational enough to get them interested?

[Guest guest]

Hi Kay,

I think the protest against Steere was pretty sensational and it made my

local radio news, I even got to hear Rita Stanley's voice as she was

interviewed. I guess turning out in force, although peaceful is the way to

go....but where? Anyone know where Steere lives or works?

Marta

-

>From: " Kay " <b10g7@...>

>

>I am sure that we are on the threshold of something BIG...our stories

>are getting out there...and there is some promising new research. We're

>going to blow this thing wide open.<<<<

>

>i think we NEED to get on the news.

>

>what can we do that will be sensational enough to get them interested?

>

>kay