Re: putting our journals together

[Guest guest]

In a message dated 8/23/99 9:47:48 AM Eastern Daylight Time,

mroswell@... writes:

<< Write your own Lyme story in a word processor. Edit it to 1000 characters,

and copy it onto the web page.

>>

This is great, Margie. I'll be putting together my own story and eventually

I'll get around to adding it, LOL. I'm gonna set up a link from my website

tho if that's OK with you.

, New Bedford, MA.

Monday, August 23, 1999

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[Guest guest]

On Mon, 23 Aug 1999 LymeDizzez@... wrote:

> << Write your own Lyme story in a word processor. Edit it to 1000 characters,

> and copy it onto the web page.

> >>

>

> This is great, Margie. I'll be putting together my own story and eventually

> I'll get around to adding it, LOL. I'm gonna set up a link from my website

> tho if that's OK with you.

Absolutely OK! The site may change somewhat. I'd like to broaden its

purpose, really. I'd like to invite patients of threatened doctors to tell

their stories...along with patients who were undertreated, patients who

are absolutely fine now, etc.

Whatever is your story!

Sorry about the 1000-character limit. I'm doing this as a volunteer, and

the easiest thing was to use a free guestbook service that imposes that

limit.

Please do tell others about the site. And let me know if there are any

problems.

Margie

--

Margie Roswell

3443 Guilford Terrace

Baltimore, MD 21218

H: 410-467-3727

W: 410-455-6802

E: mroswell@...

W: http://hello.to/maps

[Guest guest]

This is a great idea. Will do!!

>

> << Write your own Lyme story in a word processor.

> Edit it to 1000 characters,

> and copy it onto the web page.

> >>

>

===

Have a Great Day!

Rev. Liz Kelso

ICQ# 18531920

**Powered by Jesus**

__________________________________________________

[Guest guest]

Hi Margie,

This is a great idea and thanks so much for making this available, I

usually shy away from posting my private stuff on the net, due to insurance

problems when I was trying to get approved for disability. Something I had

posted to the Lyme newsgroup found it's way to my disability company (UNUM)

and they called my doctor and boy did I get a lecture. I cried for a solid

week, fearful that I had caused problems for my doctor by a stupid comment I

made. I just want to warn you and others to be very careful what you post

in open forums, it can come back to haunt you.

Hugs,

Marta NJ

>From: Margie Roswell <mroswell@...>

>

>On Mon, 23 Aug 1999 LymeDizzez@... wrote:

>> << Write your own Lyme story in a word processor. Edit it to 1000

characters,

>> and copy it onto the web page.

>> >>

>>

>> This is great, Margie. I'll be putting together my own story and

eventually

>> I'll get around to adding it, LOL. I'm gonna set up a link from my

website

>> tho if that's OK with you.

>

>

>Absolutely OK! The site may change somewhat. I'd like to broaden its

>purpose, really. I'd like to invite patients of threatened doctors to tell

>their stories...along with patients who were undertreated, patients who

>are absolutely fine now, etc.

>

>Whatever is your story!

>

>Sorry about the 1000-character limit. I'm doing this as a volunteer, and

>the easiest thing was to use a free guestbook service that imposes that

>limit.

>

>

>Please do tell others about the site. And let me know if there are any

>problems.

>

>Margie

>--

>Margie Roswell

>3443 Guilford Terrace

>Baltimore, MD 21218

>H: 410-467-3727

>W: 410-455-6802

>E: mroswell@...

>W: http://hello.to/maps

>

[Guest guest]

Hi Marta,

Maybe not specifics, but can you give any general examples of what could

go wrong? Perhaps guidelines of what not to say?

I have some energy to devote to making a contribution to Lyme via the web,

and maybe in other ways as well. I tried to find something helpful to do.

Definitely don't want it to cause problems for people!

Keep in mind, also that our onelist listserv is archived, as are all the

posts to the lyme newsgroup, so in a pretty strong sense, there's no

difference between guidelines for posting to them them and to

http://messages.to/lyme.

I'd be happy to post guidelines on my web page, if we can come to develop

them.

Margie

On Mon, 23 Aug 1999, J & M McCoy wrote:

> From: " J & M McCoy " <mlmccoy@...>

>

> Hi Margie,

> This is a great idea and thanks so much for making this available, I

> usually shy away from posting my private stuff on the net, due to insurance

> problems when I was trying to get approved for disability. Something I had

> posted to the Lyme newsgroup found it's way to my disability company (UNUM)

> and they called my doctor and boy did I get a lecture. I cried for a solid

> week, fearful that I had caused problems for my doctor by a stupid comment I

> made. I just want to warn you and others to be very careful what you post

> in open forums, it can come back to haunt you.

> Hugs,

> Marta NJ

>

>

> >From: Margie Roswell <mroswell@...>

> >

> >On Mon, 23 Aug 1999 LymeDizzez@... wrote:

> >> << Write your own Lyme story in a word processor. Edit it to 1000

> characters,

> >> and copy it onto the web page.

> >> >>

> >>

> >> This is great, Margie. I'll be putting together my own story and

> eventually

> >> I'll get around to adding it, LOL. I'm gonna set up a link from my

> website

> >> tho if that's OK with you.

> >

> >

> >Absolutely OK! The site may change somewhat. I'd like to broaden its

> >purpose, really. I'd like to invite patients of threatened doctors to tell

> >their stories...along with patients who were undertreated, patients who

> >are absolutely fine now, etc.

> >

> >Whatever is your story!

> >

> >Sorry about the 1000-character limit. I'm doing this as a volunteer, and

> >the easiest thing was to use a free guestbook service that imposes that

> >limit.

> >

> >

> >Please do tell others about the site. And let me know if there are any

> >problems.

> >

> >Margie

> >--

> >Margie Roswell

> >3443 Guilford Terrace

> >Baltimore, MD 21218

> >H: 410-467-3727

> >W: 410-455-6802

> >E: mroswell@...

> >W: http://hello.to/maps

> >

>

>

>

> ---------------------------

[Guest guest]

Hi Margie,

I hope you don't think I was putting down the journal and website idea,

I think it is terrific and wish I could holler my story from the rooftops of

tall buildings. You must really think I am paranoid, and for good reason.

I just wanted to share what happened to me with my doctor and insurance

company. Since this happened, I did get an anonymous type email address to

use when and if I wanted to post in open forums. I needed to use my real

name on this list as I felt it was important to be a real person here as a

moderator and not a silly alias.

Specifically what I did wrong two years ago was speculate in a newsgroup

forum, that since I was having difficulty getting approved for disability

with a Lyme diagnosis, I could get my doctor to change my dx to CFS. See

how naive I was! Because I named the disability company in the post, they

must have done a deja search for their name, read my post and contacted my

doctor.

You are correct about the archives of being available, but they

are only available to members as far as I know anyway. When Harry

Dewey and I discussed this list when it was founded the fact that I needed

the privacy of an email forum was discussed and I was made aware that this

is near impossible. Anyone could join our list and read the archives and

use them against us if they wanted to.

The only suggestion I have for people who want to tell their story in an

open forum is that before the post it, they reread and reread, and ask

themselves, " Is this something I would like to see printed on the Front Page

of my Local Newspaper? "

We have seen what naming names of doctors can do, look at poor Doctor

Burrascano, now being a target by other doctors with agendas of their own

relating to Lyme disease.

I really did not mean to discourage anyone from telling their story on

your web page or any other, I just wanted to remind them to be careful and

share my horror story.

Hugs,

Marta NJ

>From: Margie Roswell <mroswell@...>

>

>Hi Marta,

>

>Maybe not specifics, but can you give any general examples of what could

>go wrong? Perhaps guidelines of what not to say?

>

>I have some energy to devote to making a contribution to Lyme via the web,

>and maybe in other ways as well. I tried to find something helpful to do.

>Definitely don't want it to cause problems for people!

>

>Keep in mind, also that our onelist listserv is archived, as are all the

>posts to the lyme newsgroup, so in a pretty strong sense, there's no

>difference between guidelines for posting to them them and to

>http://messages.to/lyme.

>

>I'd be happy to post guidelines on my web page, if we can come to develop

>them.

>

>Margie

[Guest guest]

Marta that is excellent advice - i like the part about the front page of a news

paper = i am going to reread my

story and see if i missed anything!!

Thanks

roe

J & M McCoy wrote:

> From: " J & M McCoy " <mlmccoy@...>

>

> Hi Margie,

> I hope you don't think I was putting down the journal and website idea,

> I think it is terrific and wish I could holler my story from the rooftops of

> tall buildings. You must really think I am paranoid, and for good reason.

> I just wanted to share what happened to me with my doctor and insurance

> company. Since this happened, I did get an anonymous type email address to

> use when and if I wanted to post in open forums. I needed to use my real

> name on this list as I felt it was important to be a real person here as a

> moderator and not a silly alias.

> Specifically what I did wrong two years ago was speculate in a newsgroup

> forum, that since I was having difficulty getting approved for disability

> with a Lyme diagnosis, I could get my doctor to change my dx to CFS. See

> how naive I was! Because I named the disability company in the post, they

> must have done a deja search for their name, read my post and contacted my

> doctor.

> You are correct about the archives of being available, but they

> are only available to members as far as I know anyway. When Harry

> Dewey and I discussed this list when it was founded the fact that I needed

> the privacy of an email forum was discussed and I was made aware that this

> is near impossible. Anyone could join our list and read the archives and

> use them against us if they wanted to.

> The only suggestion I have for people who want to tell their story in an

> open forum is that before the post it, they reread and reread, and ask

> themselves, " Is this something I would like to see printed on the Front Page

> of my Local Newspaper? "

> We have seen what naming names of doctors can do, look at poor Doctor

> Burrascano, now being a target by other doctors with agendas of their own

> relating to Lyme disease.

> I really did not mean to discourage anyone from telling their story on

> your web page or any other, I just wanted to remind them to be careful and

> share my horror story.

> Hugs,

> Marta NJ

>

> >From: Margie Roswell <mroswell@...>

> >

> >Hi Marta,

> >

> >Maybe not specifics, but can you give any general examples of what could

> >go wrong? Perhaps guidelines of what not to say?

> >

> >I have some energy to devote to making a contribution to Lyme via the web,

> >and maybe in other ways as well. I tried to find something helpful to do.

> >Definitely don't want it to cause problems for people!

> >

> >Keep in mind, also that our onelist listserv is archived, as are all the

> >posts to the lyme newsgroup, so in a pretty strong sense, there's no

> >difference between guidelines for posting to them them and to

> >http://messages.to/lyme.

> >

> >I'd be happy to post guidelines on my web page, if we can come to develop

> >them.

> >

> >Margie

>

> ---------------------------