Re: WOW what a day

[Guest guest]

Hi ,

So glad you found your way here to post, I enjoyed meeting you

yesterday, wish we could have had more time to chat, hope we get to know

each other better through this list and maybe future protests, I would love

to do this all over again, no matter how bad I feel today.

Big hugs,

Marta NJ

-

>From: Phishmomnj@...

>

>Hi all,

>I sure hope this post takes since I have had problems. Thank you Marta for

>helping me figure it out. What can I say: my knees are throbbing and I

can't

>feel my feet, but

>I am still smiling. Voice is gone, but hubby is happy about that! LOL I

>had so much energy after the rally that I went to Toys R Us to do Xmas

>shopping. Thank you Reid for being a train buddy. Being from the sticks,

I

>would have been totally lost.

>

>I can't believe that so many showed up. Someone above was looking out for

>us, giving us the sunny side of the street. My SAD got a good boost with

all

>the sunlight. We had so many people stopping as saying they too had lyme

and

>was suffering the consequences. I have a new respect for New Yorkers.

They

>stopped, they listened, they asked how they could help, and they thanked us

>for our work.

>

>I had one rude man, who was heading into the OPMC office building, that

said

>if the doctor lost his license, he must have been incompotent. " OPMC is

here

>to protect you " , he said. I told him they weren't and if you did your

>research you would see why. I just hate that attitude that shouts " you are

a

>stupid layperson, what do you know about medicine? " Someone from the

office

>building started taking poloroids of us. I guess they are starting a

dosier

>on each of us. Next thing you know, we will be on the FBI radical list

LOL.

[Guest guest]

joan .....john from what i know was the master of passive protest.....i feel

that he was there with us for our cause and that if he was still with us

maybe he would have been there to help us........we rocked in a very good

way......last nite diane and i discussed that we did not get alot of

press.....thanks to the transit strike .....personally i feel we accomplished

our goal......opmc knew we were not happy and i think we educated alot of

nmew yorkers....plus we may get the 60 minbutes thing........we have numerous

things to be proud of.....maybe we could have got more by being defiant and

getting arrrested .....chaining ourselves to the opmc desks or

something.....but still we were small potatoes in NYC yesterday with all the

big things going on......it was our first step....well second after nih

.....we are growing ....from 18 to 120 is a great jump.......in the big apple

no less......when we do our ribbon tyiong around the us....( and france where

we have members) we will become a group to reckon with....

....marta i suggested may to diane also,but that is a long time to wait

.....personally my support group does not meet till the end of jan.

again.....due tothe holidays......maybe march or feb.....so we can get the

word out....

Reid

[Guest guest]

Hi ,

I loved the Lyme lyrics that you wrote for " Imagine " ! Being a big

Lennon fan, I had mixed emotions about having the protest on that sad

anniversary...but I am now glad we did, because something POSITIVE can

now be associated with that date.

Take Care,

Joan LI NY

From: Phishmomnj@...

Hi all,

I sure hope this post takes since I have had problems. Thank you Marta for

helping me figure it out. What can I say: my knees are throbbing and I can't

feel my feet, but

I am still smiling. Voice is gone, but hubby is happy about that! LOL I

had so much energy after the rally that I went to Toys R Us to do Xmas

shopping. Thank you Reid for being a train buddy. Being from the sticks, I

would have been totally lost.

I can't believe that so many showed up. Someone above was looking out for

us, giving us the sunny side of the street. My SAD got a good boost with all

the sunlight. We had so many people stopping as saying they too had lyme and

was suffering the consequences. I have a new respect for New Yorkers. They

stopped, they listened, they asked how they could help, and they thanked us

for our work.

I had one rude man, who was heading into the OPMC office building, that said

if the doctor lost his license, he must have been incompotent. " OPMC is here

to protect you " , he said. I told him they weren't and if you did your

research you would see why. I just hate that attitude that shouts " you are a

stupid layperson, what do you know about medicine? " Someone from the office

building started taking poloroids of us. I guess they are starting a dosier

on each of us. Next thing you know, we will be on the FBI radical list LOL.

Officer Doran was great. He even gave us pointers on placement of our

posters. All I see on the NYC news is the bad side of the police. I guess we

were much more subdued than the 5000 protesters in lower manhatten. The

transit workers were having a very large and rowdy rally. I guess thats why

ours didn't get much press.

The possibility of having no mass transit, if they strike, is more important

than being bed ridden. What ticked me off ( no pun attended) was CNN. They

were right upstairs but said they did not have any available camera crews.

Hmm, I wonder if they knew that two of their cameramen were sitting in a van

right in front of us the whole time?

Our Ms Tick was wonderful, but it appeared very few New Yorkers even noticed

LOL

I suppose they see giant insects all the time. But it was so nice of her to

attend, although I had a great desire to squish her ~

Thank you all for showing your passions. A special thank you for getting me

out of bed. I felt useful for a change. I saw a flicker of my old life when

I attended protests of environmental issues. On a day like today, i felt

proud of being an american and having the right to gather and protest. ON TO

WASHINGTON!!! (well after we all recouperate LOL).

The Rally coinsided with the death of Lennon. In his words, well maybe,

" Imagine there no Lyme disease, it isn't hard to, no tick bites to die for,

no more need for IVS.....You may say I'm a dreamer, but I'm not the only one,

some day

Dr Steere will join us, and the lyme world will be as one "

Gentle hugs to all I saw in person and all those sending us positive

thoughts, we felt them.

Sussex co. " the land of no lyme "

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[Guest guest]

Hi Reid and all,

Anytime at all is great with me, as long as we have sufficient time to

get the word out, especially to those not on line, by way of support groups

and newsletters. I think May was designated Lyme awareness month since it

kicks off the season of the tick, but lately the little suckers bite all

year long.

As for accomplishing anything on Wednesday, I think we accomplished a lot,

we got a large group of people together in a relatively short time, Dr

Steere's protesters had even less time to do this. When people read our

exuberant posts and see the pictures on the web, they will come when the

next event is planned. No doubt in my mind about that. I feel this was a

personal accomplishment for me, as I put my toe in the water, and I found

out the water is fine. I will make every protest I can possibly attend,

glad I brought too, he sure looks at things differently now, when he

saw all these suffering people gathered. He feels a good lawsuit would be

just as effective, can Dr Orens patients sue the OPMC????

Hugs,

Marta, NJ

-

>From: RMcmur3194@...

>

>joan .....john from what i know was the master of passive protest.....i

feel

>that he was there with us for our cause and that if he was still with us

>maybe he would have been there to help us........we rocked in a very good

>way......last nite diane and i discussed that we did not get alot of

>press.....thanks to the transit strike .....personally i feel we

accomplished

>our goal......opmc knew we were not happy and i think we educated alot of

>nmew yorkers....plus we may get the 60 minbutes thing........we have

numerous

>things to be proud of.....maybe we could have got more by being defiant and

>getting arrrested .....chaining ourselves to the opmc desks or

>something.....but still we were small potatoes in NYC yesterday with all

the

>big things going on......it was our first step....well second after nih

>....we are growing ....from 18 to 120 is a great jump.......in the big

apple

>no less......when we do our ribbon tyiong around the us....( and france

where

>we have members) we will become a group to reckon with....

>...marta i suggested may to diane also,but that is a long time to wait

>....personally my support group does not meet till the end of jan.

>again.....due tothe holidays......maybe march or feb.....so we can get the

>word out....

>Reid

>

[Guest guest]

Dear Marta & All,

Given I'm way down here in Texas as are some

other folks with Lyme both on Lyme Aid and the

sci.med. news group, we need to think of some

way we can do stuff too. You all may or may not

know, but we're terribly spread out down here and

in many cities do not have any kind of affordable

public transportation. Thus, any kind of get together

will take quite a bit of advance notice and planning.

I am just wishing we'd win the lotto and I could

afford to come and join everyone at these protests

in support of our wonderful Lyme literate doctors.

It goes without saying, what we do now in support

of these physicians who seem to be the victims of

witch trial mania, in my humble opinion, and we

cannot afford to be nice and polite. We can and

must be loud and noisy, whatever it takes that is

LEGAL to get the media's attention, thus the

publics attention, and then through the public

the attention of our congressional representatives.

It seems to me that for so many to be up before

boards right now at the same time, that it is a

coordinated effort. What crossed my mind

tonight is that the insurance companies suffered

a tremendous blow when CT. made treatment

for Lyme Disease mandatory. What would follow

next is people in other states following the CT.

example to the letter and hoping for the same

results.

Who would be most impacted by each state making

treatment for Lyme Disease meet specific criteria?

The insurance companies. I believe that the people

filing the complaints could well be insurance companies

with deep pockets who feel they can get away with

anything, because that's just what they've been doing

for a long time. So, do we go state by state and

ask say the folks on sci.med. news group to send

information regarding their insurance to someone

or several someone's on our list who are also on the

sci.med news group and start counting insurance

companies into the negative feedback from the

Lyme Community? If we are so blinded by our own

distaste etc. for Steere and his ilk, we could well be

missing the true enemies, if you will, the insurance

companies who do not want to pay for even home

infusions when it saves them so much money, and

even to making us do it ourselves whether we are

well enough to do so or not.

I think we need to go to the biggest insurance

companies in New York and let them know we

have their number and we're not going to stop

until their names are plastered all over the news

be it written, audio, or audio and visual, I believe

we may be missing the boat on putting too much

emphasis on Steere, CDC, NIH, etc. yes they are

not coming clean with the truth, but why? What

is it they gain by not being truthful or only being

half truthful? How about the money that the

insurance companies use to fund studies for

new medications and such? So the pharmaceutical

companies should be able to help us because

even if some greedy doctors do not believe there

is much profit to made from curing Lyme right after

infection, the pharmaceutical companies, can come

out as the good guys here if they want to by supporting

our efforts to keep more and more people from being

condemned to a life we never expected in our worst

nightmares.

I could go on but out of deference to everyone's

eyeballs, I'll quit for now and ask for feedback.

If anyone writes to me please put SANDRA in the

subject field first then whatever else you want so

I will not miss your message. Two Lyme groups,

3 chronic pain groups, and one quilting group, are

about beyond my ability to handle! VBG

Wishing us all health and freedom from pain,

both physical and emotional - / Texas

J & M McCoy wrote:

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

>

> Hi Reid and all,

> Anytime at all is great with me, as long as we have sufficient time to

> get the word out, especially to those not on line, by way of support groups

> and newsletters. I think May was designated Lyme awareness month since it

> kicks off the season of the tick, but lately the little suckers bite all

> year long.

> As for accomplishing anything on Wednesday, I think we accomplished a lot,

> we got a large group of people together in a relatively short time, Dr

> Steere's protesters had even less time to do this. When people read our

> exuberant posts and see the pictures on the web, they will come when the

> next event is planned. No doubt in my mind about that. I feel this was a

> personal accomplishment for me, as I put my toe in the water, and I found

> out the water is fine. I will make every protest I can possibly attend,

> glad I brought too, he sure looks at things differently now, when he

> saw all these suffering people gathered. He feels a good lawsuit would be

> just as effective, can Dr Orens patients sue the OPMC????

> Hugs,

> Marta, NJ

> -

>

> >From: RMcmur3194@...

> >

> >joan .....john from what i know was the master of passive protest.....i

> feel

> >that he was there with us for our cause and that if he was still with us

> >maybe he would have been there to help us........we rocked in a very good

> >way......last nite diane and i discussed that we did not get alot of

> >press.....thanks to the transit strike .....personally i feel we

> accomplished

> >our goal......opmc knew we were not happy and i think we educated alot of

> >nmew yorkers....plus we may get the 60 minbutes thing........we have

> numerous

> >things to be proud of.....maybe we could have got more by being defiant and

> >getting arrrested .....chaining ourselves to the opmc desks or

> >something.....but still we were small potatoes in NYC yesterday with all

> the

> >big things going on......it was our first step....well second after nih

> >....we are growing ....from 18 to 120 is a great jump.......in the big

> apple

> >no less......when we do our ribbon tyiong around the us....( and france

> where

> >we have members) we will become a group to reckon with....

> >...marta i suggested may to diane also,but that is a long time to wait

> >....personally my support group does not meet till the end of jan.

> >again.....due tothe holidays......maybe march or feb.....so we can get the

> >word out....

> >Reid

> >

>

> > 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 agree marta....hopefully nexdt time my wife will attend.....i feel that she

to would change her perspective after meeting all of u.....

but it is slowly happening anyway.....

as i am typing this i am exausted besides the protest my 8 yo( the one who

has lyme also) had a slumber party last nite for her b-day....so nobody

slept......she is zonked on the couch now.....

her friends know she has lyme and also that i suffer greatly from it and no

longer work.....these kids are so smart now a days....well her newest friend

that just moved to town was here.....and guess what her 15 yo sister missed a

year of scholl due to lyme .....had a long talk with her dad when he picked

her up......hmmmmm small world huh????? waiting for a ribbon tying day....Reid

[Guest guest]

In a message dated 12/11/99 12:21:46 PM EDT, RMcmur3194@... writes:

<< besides the protest my 8 yo( the one who

has lyme also) had a slumber party last nite for her b-day >>

Oh , and Happy Birthday to {{{{{{Reid's daughter}}}}}}} : )