Gettysburg and CREDIBILITY

March 20, 2000

Gettysburg & CREDIBILITY

You may have noticed that there are people in the last couple of weeks that have unsubscribed from this list, and/or have revealed that they are not going to Gettysburg. Much of this is due to the reasons below.

There are many of us that have been working the battle very hard (some anonymously) behind the scenes. We are on the verge of winning the battle. At the pace in which we are going, in the next couple of months, the battle will be won. We are now winning since various influential parties have been swamped in truthful, and undeniable volumes of FACT and DOCUMENTATION. Having a large demonstration would, of course be very helpful; however, so far it's been difficult since the most ardent people are the sickest. In this sense, we hope that Gettysburg will be successful.

There is a substantial concern that Gettysburg is evolving into a circus. We are supposed to be sick people; however, there is constant talk about partying, with the attitude " Let's get ready to rumble " . As I'm sure everyone knows, these comments are reposted around the Web. There were people at the OPMC rally who were embarrassed by MissTick - not the person, but the character. It seems that this carnival atmosphere is being encouraged at Gettysburg. If the press will indeed appear, this will be both embarrassing and counterproductive.

Of greater concern is the article in the Gettysburg Times. To someone who is not familiar with the circumstances, it appears to be a hard-hitting, and comprehensive piece. In fact, it is fraught with inaccuracies - to be charitable, and therefore may severely hurt our CREDIBILITY. If one reads it closely, it's a PR disaster.

I anticipate being flamed, but this is the reality of the situation. Regardless of the responses to this post, I will not discuss this any further.

Neurolyme

March 21, 2000

jane....you have made a point well taken .....however i do not agree.....as

for this information being posted on the web i check many bb and sites......i

have seen little if anything posted on gettysburg at all.....much less mine

or anyone elses " fun...party " comments being reposted elsewhere......i admit

i am probably the worst offender...

reason.....i no longer hold any hope to be cured from lyme.....thats right

......i do not believe my symptoms or pains will ever be relieved.....to cope

i joke about a very serious disease....even with non lymies.....people with

serious doomsday attitudes get so wwrapped up in themselves that they spend

so much time on the " pity pot " they do not get involved in the political and

other activities that we need to be involved with..my support group is a

perfect example....when i asked for letters for dr.b...one [person outta 30

sent 1..... " i was to sick they said " when they los there doc they will really

be sick....samew with g burg.......i offered to rent a bus......had a person

who was gonna pay half for our cause.......no interst.....will tell them

about it tonite...again...

\ i suffer as most with fatigue .....energy ....comprehension and other lyme

related problems......what limited energy i have goes toward lyme activism

andeducation...plus i am active in a childrens charitir ....that just make s

me feel productive.....something i did not feel for years...thanks to lyme

many nites i suffer from insomnia.......this gives me the perfect time to

write letters......fax info for my charitie( rates are better).....and do

volumes of research....i could just as easy stare at the ceiling and

moan.....but that would get me and us nowhere.....

AS FOR THE CIRCUS ATMOSPHERE.....THE OPMC RALLY WAS ONE HIGH POINT IN MY

LIFE....MEETING MY ADOPTED FAMILY.....PLUS PROTESTING FOR A GOOD CAUSE....MIS

TICK IN MY OPINION WAS GREAT...WE NEED TO BE ABLE TO LAUGH AT OUR

SELVES....WE MUST OR DIE...STILL WE EDUCATED MANY IN MANHATTEN THAT DAY

.....SOME STOPPED JUST TO LOOK AT HER.....THEN ASKED QUESTIONS....WE HAVE BEEN

DRAWN TOGETHER THRU SHARED EXPERIANCES GOOD AND BAD..... WE REJOICE WHAT WE

ARE ABLE TO DO.......AND TOGETHER WE MAKE EACH OTHER STRONGER......I FOR ONE

AM ALL FOR THAT .....AND WHY CANT IT BE FUN?

WHY NOT A PARTY AFTER.....OR DURING....WE ARE NOT DEAD YET.....WE ARE ONLY

LOOKING FOR RESEARCH AND EDUCATION FOR OUR DISEASE.....U KNOW THAT ONE WHERE

" U DON'T LOOK SICK " BUT ARE....

I FEEL WE CAN GET OUR POINT ACROSS WITH OUT BEING MORBID....THOUGH WE HAVE

LOST MEMBERS TO DEATH....

i know this is long and is not a flame i just disagree....u are entitled to

ur opinion...i feel if we did not come of credable at OPMC we would not be

getting the speakers and elected officals that will be at gettysburg......on

a personal note while i will not frown or look glum there i will A. sit

alot....b. probably relax in lovettes pool afterwards.....and c. PAY FOR THIS

TRIP HEALTH WISE FOR MANY DAYS....LIKE I DID AFTER OPMC.......BUT IT WAS

WELL WORTH IT!!!!!!!!!

Reid

March 21, 2000

ps as for resigned from the list....

scott......i talk to himevery day is going thru some typicle teen stuff

....frustrated and compunded by lyme.....

dabs my dear.......sent her an e mail asking why she left.......her computer

croaked and can only access the list when her daughter comes home with her

lap top....she is working on getting a new puter......anyone have a workable

one lying around?

Reid

March 21, 2000

diane....i am sad u are not attending.....what if we hold a mock

funeral......instead of a party.....????? man the paranoia is running

high.....i beginning to wonder if there is lyme at all.....while the " other

side wines and dines and collects money from ins aned other cos.......we who

suffer are supposed to stay at home and suffer.......sit on our pitty pots

and look out the window to see who is watching.......i have been

followed.....by private investigators hired by my ex employeer.......my

lawyer has seen the reports.......i am disable by lyme not dead yet....and

refuse to act dead...

god.....grow up and fight ....the bastards are makingu scared.....just what

they want... a bunch of moaners and bitchers......who do nothing.....as for

the party........with out it i probably could not go.....the cost of 2 nites

in a room plus food for me and my kids...well does not fit into my ssd

budget....thankfully we will eat a big breakfast and pig out at

lovettes.....YES WE CAN CELEBRATE LYME .....WE ARE ROLLING MORE THAN

BEFORE.....Diane u put urself on the line in NYC what happened.......if i

worried about what people thought of me .....i would have gone back to work

because " hey u look good u can work " .....yea rite.....till u live my lfe do

not tell me what or what not to do......

for those who stay home.......have fun......u don't know what u are

missing....

Reid

March 21, 2000

benadette.

personally i do not care where orens went on vacation....i have read partial

transcripts .....yes his record keeping was shoddy.....many doctors

are.....he has helped lyme patients......maybe we should have bought him a

tape recorder to tape his comments to be transcribed in pts records....thats

what my llmd does....

HE was NOT asking for money .......it was the lyme groups in NY and FAIM that

started the fund.....

after 40 years praticing and the stress of an investigation he deserved a

vaction

i am beginning to feel like i am alone here.....the govt. and steere are

getting just what they wanted....to divide and conquer us.....thru paranoia

and intimaddation...

WHY is this coming up now ....when this has been planned for so

long......maybe the spys are among us...?????? could be........check out the

aol board .....nobody goes there anymore........mmmmmm maybe my phone is

tapped....IF WE SPEAK THE TRUTH WE CANNOT FAIL....

Reid......this is my last post on this matter.....i am so mad i want to punch

my monitor.........i am sooooooo sisappointed in this turn of events.....

March 21, 2000

does anyone have the article saved i did not save it.....please send it.....i

to do not know what jane saw ...but will reread it

Reid

March 21, 2000

In a message dated 3/21/00 3:13:02 PM Eastern Standard Time,

rmcmur3194@... writes:

<< ....i have read partial

transcripts ..... >>

no you read the outcome/decision...not the transcripts of his testimony...

sorry...the Oren's thing really is a seperate issue from the Gettysburg

thing...Don't punch your monitor...it will cost you a trup to Gettysburg to

pay to replace it...do not fret.....b

March 21, 2000

In a message dated 3/21/00 1:53:35 AM Eastern Standard Time,

ferraroa@... writes:

<< Now lets get back to the matter at hand and yes, lets Rumble!

In our own way - which means being able to be at a social type event at all.

We'll all pay for it for the next few days with pain and fatigue that no one

but us could ever understand. But it will be worth it. I wish I could see

some camera spies there, I'd invite them back home with me to see what this

event took out of me. But it also gives me something, hope! Thank you and

God bless you.

Vicki >>

Vicki, I was going to respond to the message credibility, but you said

everything I was going to say. We will all pay for this event with fatigue,

pain, etc., and it will take awhile for us to recover but it will be worth it

if we can get acknowledgment of our Disease and what is happening to our

Physician's. There are about 10-12 of us traveling from Michigan a 10 hour

trip. We believe in what Lovette is trying to do. As far as an accurate

account in the Gettysburg Times. I have had over 7 interviews in different

papers in the last year. I can go through and find inaccuracies in every

article and these were reporters who believed in our cause. Sometimes the

reporter makes a mistake, sometimes it happens during the layout, put I have

always been grateful that reporters have been willing to cover our issues in

a State (Michigan) that doesn't want to acknowledge we even have a problem

with this disease. We in this state do know what it's like to loose a

physician, a very caring Dr. lost his license for treating Lyme disease in

our state. We need to stick together, the issues are to important to all of

us... Carol F. in MI

March 21, 2000

Jesus ma'am you PAID for it all out of pocket?? Well that is the first time

i've heard of a lymie with money.(j/k) Now how can i ask for some

money(j/k). I'll try and make it up but it looks kinda iffy.

(the youngin)

March 21, 2000

WOW! EVERYBODY CALM DOWN!

I know that there are many devoted sufferers working " behind the scenes "

for our cause and disagree with the different ways we are trying to get

Lyme disease recognized for the epidemic it has become. I met some of

these people at the OPMC.

It is natural to disagree on strategies, but why are we fighting amongst

ourselves? Isn't that what " the enemy " wants...to divide and conquer?

First, I want to thank Lovette. Just think about the time, energy and

expense she has put into this! When she mentioned " the party "

afterwards, I envisioned a bunch of exhausted, sick, but happy people

hugging eachother and collapsing on the ground to music! " Floatation

devices for IV poles " was hilarious...not to be taken seriously. But I

can see how outsiders would not understand. However if Dateline DID

cover the party afterwards, I doubt they'd find much dancing... although

they might see the ambulance that unfortunately might have to be called

for me or some other poor, exhausted Lyme sufferer.

As far as Dr. Orens goes...well there is a lot of controversy there, and

maybe he isn't the best choice as speaker, but there will be other fine

speakers there. And, we need the publicity.

MisTick, you were wonderful at the OPMC. People really took notice of

you at and ASKED QUESTIONS AND SHOWED INTEREST in learning about Lyme

disease. If that's what it takes for people to take notice, than so be

it.

It is a good thing to hear opinions from all sides...that is how we

better ourselves. But to boycott the rally because there will be a

" party " afterwards, HURTS US ALL. PLEASE RECONSIDER.

Joan LI NY

March 21, 2000

would have sounded great a couple of weeks ago a ball room or sucvh......why

not a barn?????lovette has it all set up.......leave it alone i say.....those

of u that do not want to go to her " party " go where u want to.....have fun at

the ballroom i for one will love the pool......while i sip virgin

coladas.....surrounded by my lyme harem.....listening to " my way " from the

dj.......ahhhhhhhhhhh heaven

Reid

March 21, 2000

Hello , and Jane too,

I just re-read the Gettysburg article and really took my time this time trying to see the inaccuracies. First let me apologize for one of my prior comments, I said, " I did not think there was enough information about the rally in the article. " On a second thorough reading, I see that the rally is introduced in the very first part of the article along with a picture of quilts that will be displayed. And at the end of the article under the heading " Circle of Hope " much more details about the rally are given. I was very wrong. I have to stop reading articles on the computer and print them out I guess, in order to fairly evaluate them. As for other inaccuracies, I just don't see them, if Dr Oren's was misrepresented as a pediatric doctor, so what??? Lovette confessed to misinformation about Shoemaker's benefactors for his study, so that is another, but hardly a major problem. The only other inaccurate thing I read is Dattwyler's comment about three weeks of abx will cure LD.

As for the people who gave the article to to critique, these were all Non-Lymies I think. There is no way in hell that anyone can fully understand the troubles of having this disease unless they have it, or live with someone who has it on a daily basis. I would not expect any article or thesis or book or even a movie, to fully explain what it is like to live with a chronic disease that mostly goes unrecognized and is scoffed at by the medical community at large. I think that this poll was unfair and I cannot understand why there is even any question about the story whatsoever. I can only surmise that there is another reason why and Jane and whoever else does not want to attend the rally, if it is the party thing, fine. Understood. Don't attend the party, many of us who have given this much thought since Jane's post, have determined that we will not be dancing around, sure others may, non-Lymies particularly, are we to not have a pre-determined place to unwind after the day, with music, food and conversation because a few people think we should be hiding in our rooms??? It makes no sense to me. I also attended the NYC rally at 's request, I didn't know much about Dr Oren's but I took the word of others that he was a good doctor, and I traveled to NYC by train at an expense far greater than the two days I will spend in G-burg, for only a few hours of rallying. I came away from there with a great feeling, but I would have much more enjoyed it if I had the opportunity to speak at greater length with the people I met. I look forward to this " party " or whatever you want to call it, I think that you are greatly exaggerating the harm that this after rally event will cause. I hope you will reconsider your stance on this event. You say that you will not respond further once you gave your opinion, but that is hardly fair, since your post has generated such attention. If you ask me, you took one minor aspect of the day's events and decided in advance that no good would come of the entire day's events because of it. Maybe you can convince me that I am all wrong. But so far, I think this will be a fabulous event, one I will be proud to take part in and I will be forever grateful to Lovette for all her hard work in organizing and planning it. , I know you had problems too with naysayers when you organized the NYC rally, I just don't understand why you would comment like this after all you went through to make NYC successful, short term memory I guess.

As for Jane , she is a new member of , as of January and she does not give her name on her member profile, she is using an address of , which anyone can use to hide their home internet provider, she does not post on the Lyme newsgroup using the name neurolyme@... nor has she posted anything of a personal nature to this list. I can only assume she is hiding her identity. It sounds to me that has had private email with Jane, and the others who wish to remain anonymous, and has been brainwashed with the negativity of a few.

Hugs,

Marta

>From: BearyPrety@...>>Dear Lovette, > I tend to agree with Jane. I think that she has made some very valid points. >I was very excited about Gettysburg. I thought it was a great idea .My Family >and I were really looking foward to attending. We had even booked >reservations at the Heritage Lodge a couple of weeks ago. I admire you for >your hard work & dedication.>>But when I learned about the after " party " with a DJ, swimming pool,catered >food,dancing etc,.etc. (Someone even wrote abt bringing a floating device for >iv poles !) I had to sit back and think about it again.I know that was >written with good intentions, and I know how much we all love eachother here, >and how much of a family we all are, and how we all look foward to seeing >eachother whenever we can

March 21, 2000

In a message dated 3/21/00 3:13:02 PM Eastern Standard Time,

rmcmur3194@... writes:

<< ....i have read partial

transcripts ..... >>

no you read the outcome/decision...not the transcripts of his testimony...

sorry...the Oren's thing really is a seperate issue from the Gettysburg

thing...Don't punch your monitor...it will cost you a trup to Gettysburg to

pay to replace it...do not fret.....b

March 21, 2000