Gettysburg and CREDIBILITY

[Guest guest]

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.Especially when its out educating people about our

cause and our illness. Hell, I even promised Reid a dance before I realized

that this is not such a good idea . I don't mean to rain on anyones Parade

here,I certainly don't want to hurt anyones feelings, but, I just feel that

if you really listen to Jane , she has made a good point. I have heard this

from a few other people as well these last couple of weeks.People who are

very serious about Lyme disease, and the progress that we are making. They

find the " party " insulting and have become disgusted with all of the after

event " hoopla " that may very well harm us ,and have decided not to attend

afterall. I know you mean very well. I also appreciate your hospitality,as I

am sure we all do, but.. I am sure that we are all very much aware of all of

the " spies " that float around trying to pick up info for their own adgendas.

Who knows if ( and I may be paranoid here, but things happen) say,

Dattwhyler, or Steere, or any other people who have spies scoping us out

have read posts written abt the " partying " , and will send cameras to see

everyone dancing and having a good ol time when we are all fighting to be

recognized as SICK people who are disabled, and bed ridden for the most part.

We can bearly get SSD to help us. This is very serious. And I just think that

a party right now, when we are just beginning to make progress ia a little

premature. It would have been different if It had not been written publicly.

But it has, and lets face it , alot of us here have never seen eachother

before, none of us would be able to pick out a spy who could be sent there to

make us look bad and contradict everythign that had just been stated at the

rally. I know that " I " have decided not to attend afteral.I just don't feel

comfortable with the " posted after event partying " . I feel that we are just

beginning to make progress in our cause, and the celebration is just, like I

said , too premature at this time.It could very well do us more harm than

good. Can you just imagine if the media gets a hold of us all at the party,

socializing ,dancing and having a good time when we were just telling them

how sick we all are and how we desperately need to be recognized. That could

be a disaster to our cause. Your address, and even directions to your house

have been posted online. Anyone and /or everyone has access to this info.

As far as the Getysburg times article, there were several inaccuracies

printed. And as Jane mentioned if you really read it carefully... alot of it

doesn't read well to a non lyme literate person who is just learning about

our disease. I purposely printed the article out and gave it to a few people

to read at my daughter's school yard to see what they thought of it. 4 out of

6 " non literate " lyme people said that they didn't understand how we can

fight, and say that our doctors know how to help/cure lyme disease when one

lyme disease doctor's own daughter has lyme disease for 14 years now. One

other person asked me how a lyme literate doctor cannot help/cure his own

daughter for 14 years.One person asked me how I could be so sure that 6 weeks

doesn't cure lyme. How do the doctors know that its not another illness (

steere/ dattwhyler) theory. It also mentioned that even Dr. B has/ had lyme

disease. Now I stood there and explained the whole story to them , but these

were only 4 out of 6 people who I was able to discuss the article with . What

abt the other non lyme literate people reading the article? And is Doctor

Orens really a pediatric Lyme disease doctor????? You yourself said that you

were so ill , and in a back brace, how would it look if the media or even a "

Steere/Dattwhyler investigator showed up at the after party with a camera

and got us all on tape socializing and having a good time right after a long

day of talking about our illnesses.

This is by NO Means a personal attack on you. I know that you mean well and

like I said your hospitality is very much appreciated . I just think that the

way it was advertised was just not in our best intrest.

I am sure alot of you will be very upset with my opinions, and I apologize in

advance. But if we can't write or speak abt our concerns here where can we?

Again Lovette, this is not a personal attack on you. I know you have been

working very hard for all of us. Its just very unfortunate that so many of us

have decided not to attend because of the online party advertisement and our

displeasure with the Gettysburg Times article.

I also will not respond to any email regarding this matter , as I do not want

to make this an ongoing disagreement , nor do I want this to become a problem

for the list .

This is just an opinion of my own and of a few others who are very concerned

abt this and wish to remain anonymous in fear of writing and receiving hate

mail.

[Guest guest]

You go girl

Connie, MI

[Guest guest]

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

[Guest guest]

Dear Jane:

If you are behind the scenes, perhaps you should have the courage of

your convictions to come into the lyme -light. It's easy to throw

torches when you are anonymous.

We are doing the best we can, and we are trying to educate our doctors

and our community about the serious problems with this disease. As for

any inaccuracies in the Gettysburg article - talk to me about that. I

think it was a SUPERB article, and I'm extremely grateful that a small

town newspaper would devote so much attention to our cause.

Gettysburg is about putting a face on lyme disease. If you aren't

coming to Gettysburg then I guess you'll continue to remain anonymous -

too bad. As for the rest of you - YES, WE'RE READY TO RUMBLE because

my children's doctor had his license revoked at Thanksgiving. We're

ready to RUMBLE because no one is paying any attention to this disease.

We're ready to RUMBLE because we're finally getting our masses together,

not just the " elites " who think Lyme disease is their personal

baileywick. We're ready to RUMBLE because our friends are dying and

we're mad as hell and we're not going to take it anymore!

As for our " party " afterwards - THIS IS CALLED HOSPITALITY!!

Get a grip on your gripes!!

Lovette

[Guest guest]

Jane,

I truly respect your opinion and you make good points. But in all honesty I don't think many of us really mean we are going to party. If you'll remember we also talked about it being a love fest. I think all this type of talk is simply intended to keep our spirits up and make sure we all stay excited enough about it not to miss it. And I really think poor Miss Tick has taken enough already. She is just representing a symbol, it gets attention and that is our intention. We need the attention. I do agree we don't want it to become a circus, but I really don't believe any of us are even capable of that. I will respect your wishes to say no more on the topic, and therefore do not expect a response to this. I am not trying to berate you, just point out my point of view as well. I would be interested to know what inaccuracies you refer to in the Gettysburg article. I will go back and read it with that in mind and see if I can see them for myself. Thank you for your concern and input.

Your Lyme friend,

Vicki, Md

From: jane jones <neurolyme@...>

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

[Guest guest]

,

I am so sad to see these messages. As I stated in my message to Jane, I too

think she made some valid points. But be real! We don't literally mean we'll

be dancing and partying, I don't anyway, and didn't take it serious from

everyone else. Its just an opportunity to meet and talk with each other.

Please, someone tell me, did anyone else take the partying serious? As for

the spies, that's a good point, but I don't think they'll see anything other

than a bunch of comrades discussing Lyme and meeting each other in person,

and eating and listening to music. Maybe some will be dancing, but I can

guarantee you none of us is up to the jig. Your post was obvious sincere and

not meant to hurt. But I was confused by it. Maybe its me that missed

something, please correct me if I'm wrong. As for those questions from the

people that read that article, I think that's the entire point. We are

trying to educate, and since even our doctors can't cure us, we HAVE TO

FIGHT this ourselves, we have no choice. You hear about the weakest people

fighting causes all the time (sort of like and Goliath, he had to do

it). Please reconsider going, unless of course I'm wrong and there will be

actual partying and dancing. I'd sincerely like to know if that was the

intention for real. I don't mean to sound harsh, I just don't know how else

to put it. I don't want this to turn into an ongoing argument either, I just

truly interested in how your (and others) opinion on this was formed. I

understand what you said, just the " intent " issue has got me in a quandary.

Thanks Vicki, Md

>

>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.Especially when its out educating people about

our

>cause and our illness.

[Guest guest]

Dear Friends: Once again I feel obliged to answer, and saddened that I

feel the need to defend our rally. First, as to the " party " - Yes, we

are having a DJ - it is the father of two children, ages 6 and 8 who are

deathly ill with lyme disease. It absolutely breaks your heart to see

these children and the parents who are suffering. As with my own family

and our illness, I can take almost anything that comes my way, but I

cannot take the suffering of the children.

Second, there will be no alcohol because it does not mix with the

antibiotics that we are on. And remember - this is a CATERED meal,

inside a tent with tables and linens and chairs for 200 people [to which

I have gone to great personal expense to put on], and our local doctors

are invited so that they can get to know us and to know what a lyme

patient looks like, and so that we can get to know each other and our

families in an informal setting. We have grown so close on the Internet

- I want to meet each and every one of you, and I feel that you need to

be treated well. I am using my disability money for 1 month to put

this affair on for you, and I feel it will be worth every penny. I'm

sorry for discussing the cost to me, but it seems that it needs to be

mentioned because these attacks seem so petty!!

We are all giving and sharing in our own way. If that offends

someone then I honestly don't know what to say. I won't apologize for

our event because quite frankly, in looking at everything that has been

done to bring lyme disease out in the public over the past 10 years, if

things had been effective then I wouldn't be losing my doctors. My

personal opinion is that we're finally stepping on some toes because the

PEOPLE are rising up and taking these events into their own hands.

THERE IS NOTHING BEING DONE BEHIND THE SCENES, and if it is being done,

then it is TOO LITTLE TOO LATE. Our event has national attention at

this point, and that may offend some of those for whom Lyme has become

lucrative. But tough - we're sick, our families are sick, our doctors

are being taken away from us, and I know that the good-hearted amongst

you will come.

As for Mis Tick, jeannine wrote to me several months ago and asked if

it would be okay to dress for the occasion. I am proud to have her at

the rally - there will be plenty of sick children there with this

dreaded disease, and if Patch were here he'd do the same thing.

We are not cookie cutter molds of each other - we are individuals from

all walks of life who have been stricken with a terrible disease. Come

and show your colors! I'm not going to hide and worry that someone

will be offended because we're not acting sick enough for them - I get

that on a daily basis from my friends telling me how good I look. Well,

that's great, but I can't read a book!

Lovette

[Guest guest]

Lovette,

I'm so sorry this is happening. I understand how you must be feeling, very

let down. I know how much trouble and expense you have gone through, and I

for one deeply appreciate it. I agree with everything you said here. I hope

everyone else will too. Please keep up the good work, and thank you for

doing so much. 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

>From: Arconic <smott@...>

>

>Dear Friends: Once again I feel obliged to answer, and saddened that I

>feel the need to defend our rally. First, as to the " party " - Yes, we

>are having a DJ - it is the father of two children, ages 6 and 8 who are

>deathly ill with lyme disease. It absolutely breaks your heart to see

>these children and the parents who are suffering. As with my own family

>and our illness, I can take almost anything that comes my way, but I

>cannot take the suffering of the children.

> Second, there will be no alcohol because it does not mix with the

>antibiotics that we are on. And remember - this is a CATERED meal,

>inside a tent with tables and linens and chairs for 200 people [to which

>I have gone to great personal expense to put on], and our local doctors

>are invited so that they can get to know us and to know what a lyme

>patient looks like, and so that we can get to know each other and our

>families in an informal setting. We have grown so close on the Internet

>- I want to meet each and every one of you, and I feel that you need to

>be treated well. I am using my disability money for 1 month to put

>this affair on for you, and I feel it will be worth every penny. I'm

>sorry for discussing the cost to me, but it seems that it needs to be

>mentioned because these attacks seem so petty!!

> We are all giving and sharing in our own way. If that offends

>someone then I honestly don't know what to say. I won't apologize for

>our event because quite frankly, in looking at everything that has been

>done to bring lyme disease out in the public over the past 10 years, if

>things had been effective then I wouldn't be losing my doctors. My

>personal opinion is that we're finally stepping on some toes because the

>PEOPLE are rising up and taking these events into their own hands.

>THERE IS NOTHING BEING DONE BEHIND THE SCENES, and if it is being done,

>then it is TOO LITTLE TOO LATE. Our event has national attention at

>this point, and that may offend some of those for whom Lyme has become

>lucrative. But tough - we're sick, our families are sick, our doctors

>are being taken away from us, and I know that the good-hearted amongst

>you will come.

> As for Mis Tick, jeannine wrote to me several months ago and asked if

>it would be okay to dress for the occasion. I am proud to have her at

>the rally - there will be plenty of sick children there with this

>dreaded disease, and if Patch were here he'd do the same thing.

>We are not cookie cutter molds of each other - we are individuals from

>all walks of life who have been stricken with a terrible disease. Come

>and show your colors! I'm not going to hide and worry that someone

>will be offended because we're not acting sick enough for them - I get

>that on a daily basis from my friends telling me how good I look. Well,

>that's great, but I can't read a book!

>

>Lovette

>

[Guest guest]

In a message dated 3/20/00 9:28:33 PM Eastern Standard Time, smott@...

writes:

<< As for our " party " afterwards - THIS IS CALLED HOSPITALITY!!

Get a grip on your gripes!!

Lovette >>

Jane has valid points, so please respect them. She is not the first one

to have said that to invite others to rest at your home after is one

thing...to turn it into a full fledged party does invite odd commentary.

Whether you think it should or not doesn't really matter...it does sound like

a party/circus...now I consider myself an " insider " , so I know it is not for

that purpose at all...but to those new to it all..they will see it as Janet

described.

One person said to me...whatever TV will go right to the party to get pics of

all the sick Lyme people dancing the night away as that is where the real

expose may occur....

I think Lovette as a lawyer should spend the 200$ and get herself a copy of

Oren's transcript like any prudent lawyer would do. She might think twice

before having Dr. Orens speak at this Gettysburg protest.

Anyone ask Dr. O where he just went on vacation while Lyme patients are

giving $$ from their disability $$ they need to live to support his fight in

court.....

I would go if I could on April 8th....but I can see Janet's points and I

respect them. Bernadette

[Guest guest]

btw, I was very proud of Mis Tick at the OPMC...she was an attention

grabber...

and on the streets of NYC, she was not only invited to dress, she was

definitely a necessary part....of our impact. Often her costume made people

freer to ask what was going on, and then people were pulled into a more

serious discussion of the real ramifications of untreated Lyme...

Proud of her I am, just wanted to make that clear. Bernadette

[Guest guest]

In a message dated 3/20/00 7:51:32 PM Pacific Standard Time,

BearyPrety@... writes:

<<

>>

Diane,

I very much understand your thoughts. I am going on my 3rd year of lyme

disease and currently trying to treat my horse who also has lyme. I only

lurk most of the time as I seem to get tired just reading a lot of these

messages - BUT---- maybe we can still save an uncomfortable situation.

the article has been printed and I havent read it but my suggestion is that

we back up and look at this whole picture. I am driving from Michigan, not

an easy drive for me, and all I wanted was the saturday gathering for a very

well organized appeal to all who would listen to our plight. If 60 minutes

does show up we have the very best opportunity to be heard FINALLLY.

May I suggest at this time, that we just have a social hour to meet everyone

near the square. In my prelyme days, I could dance the night away but now I

hope to be comfortable for 3/4 of the day and head for bed around 9:30pm

every nite now. I am currently trying to come off antibiotics and I can

assure you no one can interest me in a " party " . Even the few weddings and

occasions I have tried to attend these past years I always have to leave

earlier than I use to. I too don't want to offend anyone's plans but maybe a

social hour for introductions and possibly a large meeting of just our lymie

patients somewhere in town or hotel ballroom would be a better idea. I have

never been to Gettysburg and like others I will try to save a day and my

strength to see the area and return on Monday.

Maybe this sounds too much like a meeting after the demo but I still think it

would be a great opportunity to network in one spot with a future agenda to

follow. Even trying to go over the plans for MOW. I don't know if I will go

to Washington DC. Unless you have a VERY LARGE number of people, I don't

think we will get much attention. When I visit as the rep for the Michigan

Horse Industry each year, I have observed enough in DC with the American

Horse Council (A lobbying group) and how much cooperation they get with all

their work. Don't want to dampen this march but I think Gettysburg will be

our best shot this year. I have worked for many years on a large function

here in Michigan that draws 20 - 25,000 attendees and getting attention and

people to participate is very difficult.

I don't know how many will be coming from my state and if I can remain in

decent shape for the drive I CAN ASSURE YOU I CAN HARDLY WAIT TO GET THERE TO

JOIN THIS CAUSE AND FINALLY MEET YOU ALL.

Could we please have a meeting of the minds on this?? Sure hope so.

Velcro Hugs to Everyone

Bev

[Guest guest]

this whole issue of Gettysburg is getting rather redundant?!? I can

understand some not agreeing with others, we are all individuals here, some

with varrying ideas and beliefs. BUT deciding not to go because one does not

agree is like cutting off ones nose to spite ones face! So, if you dont

agree, be there to be together but remain seperate from the after hour

activities. I wish Ya'll the best of luck! Pepi

[Guest guest]

Hi Y'all,I certainly agree with Pepi's comments. I've been so envious because we are so far away and couldn't possibly come. I would love to be there. We couldn't even get to Austin. (My max driving time is 15 minutes; 30 minutes as a passenger "comfortably", and an hour max, which I dearly pay for over several days. couldn't take that trip at all.)After a gathering like Gettysburg, with adrenaline and expectations running high, it would be a letdown to have to turn around and walk away without comparing notes, without meeting the people involved, without just congratulating each other for a "mission accomplished." The opportunity to discuss the day's events in a hospitable atmosphere like Lovette's is truly a blessing. Plus, getting each other's perspective on the event will help guide us all to the next steps necessary. The ability to really talk face to face without worrying about schedules and drained energy would be a real boost. I think everyone is savvy enough to know when someone is digging for information for devious purposes. You can tell a true Lymie, and even though you haven't met each other, I think you'd recognize each other by "conversational" patterns. (You can tell even in casual conversation who is really interested and who just wants some juicy gossip or ammunition to use against you in the future. I have a 3-tiered response when people ask me about Lyme. Depending on who they are and how they ask determines which tier my response comes from.) I envy you so much. Good food, great music, comrades in arms. What more could you ask for?

Lyme took many things away from me, but it gave something wonderful back -- the ability to sing, which I had never in my life done. I couln't even sing in church, but I am passionate about music. We got into Karaoke first by following our daughter around, but then as therapy for me. I had lost my ability to read or write (I'm a technical writer by profession), was having difficulties with speech and would have lost my speaking abilities altogether if not for the brain exercise that Karaoke brought. (Uses the right brain and exercises the damaged left temporal lobe.) It has been a wonderful healing tool.

We got into the business as an avocation. Made good money, made lots of new friends, had a lot of fun. Sadly, that has now been taken away from . He can no longer stand long enough, can't move the equipment, can't depend on his voice. It's a great loss. We can only participate on the sidelines.

I'm trying to say, that Music is a great healer. I can't dance on the floor (maybe an occasional half a song once or twice on a good day), but I can sure chair dance. It does wonders for pain relief. Loosens up the muscles all along my spine. I get the best sleep on Karaoke nights (we still sing, and bring our music for other people's enjoyment, but our partner runs the show). We get criticized occasionally, too, but we know we do it for the greater good it provides us. More often than not, people praise us for not giving in.

There will always be people shooting you down. Don't let them. Showing your spirit in spite of your illness brings you more credibility than anything. If MisTick gets noticed, it's for a good reason. I think the media would look favorably on all these people who have never met in person banding together like this and working cooperatively for a common cause -- tirelessly, I might add.

THe bottom line is, THERE IS STRENGTH IN NUMBERS. The meeting is crucial to our cause if you can possibly get there -- the party is optional. Those of us who cannot travel need you there to represent us. We can only do what we can on paper, and it's frustrating not to be able to do more.

Keep singin', keep' smilin', brighten someone's day today -- DON'T LET THE BAD GUYS WIN!Rose in Texas

Pepi <rod@...> wrote:

From: "Pepi" <rod@...> this whole issue of Gettysburg is getting rather redundant?!? I canunderstand some not agreeing with others, we are all individuals here, somewith varrying ideas and beliefs. BUT deciding not to go because one does notagree is like cutting off ones nose to spite ones face! So, if you dontagree, be there to be together but remain seperate from the after houractivities. I wish Ya'll the best of luck! Pepi

Send to -Offtopiconelist messages unrelated to Lyme, please.Archives can be found at:/group/lyme-aid. They are filed by month, pick a month and search those archives for subjects you are interested.Lyme chat, go to this URL:/chat/lyme-aidShould you have trouble opening the page, go back to / and make sure you are registered with a password. You can ask ONELIST to remember you, and will only have to do this one time.To unsubscribe, send email to -unsubscribeonelistYou may substitute "subscribe", or "digest" or "normal" forthe word "unsubscribe" ("normal" is the opposite of "digest"). Leave blank both the message and subject header. The "RoseWriter" says: "Teach Tolerance, Overcome Ignorance, Advocate Lyme Literacy." See http://www.angelfire.com/tx3/RoseWriter/ or http://www.angelfire.com/biz/romarkaraoke/james.html for our Lyme Disease Horror Stories, links to LD research articles & websites, & current news items on Lyme. These sites are updated frequently, so please revisit.

[Guest guest]

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

[Guest guest]

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

[Guest guest]

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

[Guest guest]

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.....

[Guest guest]

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

[Guest guest]

To all,

I must agree with Pepi here, not going to the rally because one does not like all the events planned is cutting one's nose off despite one's face. This from a girl who lives in Texas, cannot attend the rally, and must be so tired of the posts relating to an event she cannot attend, yet she has the insight to know that while we all have differing opinions about what is good and what is bad as far as this planned rally, there are ways that all can benefit from this meeting. I find it very troubling that all Lovette's hard work in planning, organizing and paying for this rally is being criticized. I think it was Abe Lincoln (how apropos) who said, " You can please some of the people some of the time, but not all of the people all of the time. " I know I have bollixed up what he said, but you get my drift. It may have not even been the word " please " could have been " fool " I have neuro-LD too, so please excuse my lack of memory here, I am just too sick now to search the web for the accurate quote. I also agree whole-heartedly with Jeannine, " MisTick " and will proudly stand by her side as she draws attention to the culprit " Tick " that is responsible for this disease. Actually, I could wear her costume without the padding, but I digress. She is right when she says the following:

" Keep those spirits high, everyone, this is the year that willmake the difference. You will be looking back at this year and your actions in the future. You will know that you made it happen, you stood up and insisted that Lyme Disease get the recognition - and the latitude in choice of treatments that it requires. If all you did was criticize, you may be looking back with regret. No more division within the ranks! It brings spirits down and our spirits are so precarious as it is. Please lets join together. "

I can only say " Amen " to that. In my opinion, the likes of Datwyler and Steere are enjoying this division of our group and if like some suspect they are following the planning of this rally and are enjoying the fact that we will look like fools be it dressed as a tick or enjoying the fellowship of our fellow sufferers at an after event party, there is not much we can do about that, they will find mean and harmful things to say anyway, no matter if we were all wheeled in on hospital beds with IV drips hanging, or wheeled in for the rally by wheelchair. I believe it was Sigal who once stood in front of some Lyme protesters and stated into the microphone, " None of those people have Lyme, if they were so sick they wouldn't be here, " or something along those lines, I remembered we had fun with that on the newsgroup, and joked that he must have XRay vision or be a psychic or something.

Yes, as Jeannine says there will always be Naysayers, there is no way in hell that we will be able to please everyone with our efforts to be recognized. Many of the people attending this rally, will not have Lyme disease, caretakers, or spouses or friends or even children will attend who are not sick, they are entitled to a " party " if you want to call it that, after the events, those of us with LD who participate in the day's events will find it extremely hard to make this party let alone dance the night away. I never expected for a nanosecond to be able to do any more than watch others have fun, or chat with my fellow sufferers. As for the newspaper article, I need to re-read that in order to try to see it from Jane's and other's perspective, I recall the first time I read it, I thought it did not cover enough about the rally events, I figured that as the date grew near, the paper would do a follow-up story on that.

I am not feeling well at all, worse than normal, and it is sad to have to read these posts on , and have to respond. I hope like Jeannine states, that those finding fault are only doing so because they have a case of the Lyme-grouchies, I hope that they will sit down and really think about their criticisms and weigh them against all the good this rally will do for themselves and others and that they will understand that no matter what we do, there will always be criticism from the enemy camp.

Hugs to all,

Marta

>From: " Pepi " <rod@...>>>this whole issue of Gettysburg is getting rather redundant?!? I can>understand some not agreeing with others, we are all individuals here, some>with varrying ideas and beliefs. BUT deciding not to go because one does not>agree is like cutting off ones nose to spite ones face! So, if you dont>agree, be there to be together but remain seperate from the after hour>activities. I wish Ya'll the best of luck! Pepi

[Guest guest]

Hi,

I am answering mail backwards but just had to respond to this. For the

people who are so concerned about people with Lyme disease dancing the night

away, you give me and many others too much credit. I sure wish I was able

to dance, I tried to dance at a wedding last year, and it was too painful,

not to mention the sheer fatigue and days it took for me to recover from

just attending the event. I may be wrong, but I really believe the posts I

read on , many who complain about not being able to do household

functions on a daily basis will certainly not have the ability to dance and

enjoy this get together as we did before LD. Maybe the word party should be

changed to " Get Together " I assume it is not too late to promote the rally

using this term instead of Party. But it still is purely semantics, those

of us who are really sick will find it near impossible to even make the

after events group meeting, let alone dance.

As for the comments about Dr Orens, I guess I am not insider enough to

understand these allegations, and I think I'd rather not know what is being

implied. I do know that Dr Oren's worked tirelessly to treat people with LD

for 14+ years, and that no doctor deserves to lose his license for sloppy

record keeping or for treating LD. If there are other reasons he lost his

license, I would believe the doctor before I believed the OPMC. I regret to

say with the expenses I am incurring with Gettysburg and have incurred with

the NYC rally, I have not been able to contribute to his defense. I wish I

could, because I still believe we need to fight for our doctors. Oh, and I

do respect and invite Jane ' and other's opinions to be voiced, but I

do not necessarily have to agree with them in theory.

Just my two cents.

Marta

>Jane has valid points, so please respect them. She is not the first

one

>to have said that to invite others to rest at your home after is one

>thing...to turn it into a full fledged party does invite odd commentary.

>Whether you think it should or not doesn't really matter...it does sound

like

>a party/circus...now I consider myself an " insider " , so I know it is not

for

>that purpose at all...but to those new to it all..they will see it as Janet

>described.

>One person said to me...whatever TV will go right to the party to get pics

of

>all the sick Lyme people dancing the night away as that is where the real

>expose may occur....

[Guest guest]

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

[Guest guest]

marta....told scott he will get his cheek pincehed alot...lol

Reid

[Guest guest]

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

[Guest guest]

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