Re: Dr - hearing confusion

[Guest guest]

This is difficult to say but it appears that there are warring factions in the

lyme community. I don't want to get specific. I've heard that more details on

this problem will be forthcoming.

I have to be vague without pointing fingers. It is also not my intention to

get anyone " in trouble " but the things themselves that are going on need to be

exposed sometime soon. It appears that some of those who seem to be on Jone's

side, really do not have his best interests at heart. Just because a group may

be a large organization does not mean they are totally on the up and up.

I think the best thing here is for each of us is to use our own judgement and

intuition. When trying to figure out what group to listen to, I have asked

myself, how could it hurt Dr. to have a large orderly attendence at his

Hearing. I have heard,,,,second hand... that he feels the patients and activists

are not supporting him.I also feel he may be being given false information and

advice.

It is illegal to have people register or sign up for attendance at a hearing.

Dr. does not use the computor so I feel he really does not have much of a

clue as to the commotion taking place and the issues involved. I feel that those

organizing the hearing attendence (which is illegal) know that lyme people

usually don't know till the last minute whether or not to attend. They just

don't know how they will feel till the last minute....so making people sign up

and reserve space very much discourages attendance. This makes no sense to me.

People in our CT support group have talked to those at the legislative office

building and they are not discouraging attendence. It was mentioned that most of

the building is open that day and other provisions can be made for a larger

crowd. We need to help Dr. and show support before it's too late. Doesn't

it make sense that we need to quietly but firmly support him when he needs us

the most? Let's use our common sense and not

be swayed by either " side " . It is up to us whether or not we go. We do not need

permission. I feel this may be a very important time for the Lyme Community and

we need to take a stand...peacefully and respectfully but we need to take a

stand before it is too late. So many people love and are grateful to Dr. .

Let's show him we care. If a choice has to be made between the Rally and the

Hearing...I say the Hearing comes first and is the most crucial.

We have to use our own judgement because there will be no straight answer.

There are two sides opposed to each other and it's not just about petty

arguements. There is some serious stuff going on which will eventually be

revealed. I , myself don't know all of the details concerning this but certainly

am beginning to get the general idea.

Margie T

Robynn <Robynn@...> wrote:

I have received over a dozen messages recently concerning Dr 's

hearings. The messages have different information, different directions,

and different requirements AND they are from a variety of people. Many

messages I have not sent through to Lyme Aid because I believe wrong

information at this critical time will hurt and not help Dr .

Months ago an email came out saying only Ellen ellenluba@... would be

sending official updates about Dr 's situation. (Ellen has not posted

to Lyme Aid for quite some time.)

Has that changed? Are multiple people now sending out the official

statements from Dr 's office? And who is releasing the critical

information from Dr ?

I would feel better sending messages through if there was only one contact

person as originally directed or if Dr would email me directly with

his multiple representatives. (It may not need to be said, but anything Dr

personally asks me to send I will send without hesitation.)

There has been too much confusion over such an important issue to allow

multiple contradictory messages to continue to go through Lyme Aid.

Is it possible for Dr to work with the leadership of a known Lyme

disease support organization to get out needed information? Many leaders

and/or presidents of support organizations are members of Lyme Aid, I'm sure

any one of them would be willing to take on this responsibility to

communicate with Dr and let us know what he needs. Lyme Aid has over

1400 members who would like to help, but we could better serve if we

received accurate information in a timely fashion.

Please advise.

Robynn

-owner

[Guest guest]

Ellen,

While I'm glad your email address situation has been corrected, and I hope

you will post to Lyme Aid the directions and dates of the hearings, I am not

going to post that anyone has to email you or call you if they want to

attend the hearing dates for Dr .

I believe this is a hindrance to getting people to attend. Folks have

privately expressed to me feeling intimidated by the need to email a private

email address. This intimidation has made them question whether or not to

attend. This is unfair to Dr .

As you know there is no legal or procedural reason to have people email you

first concerning their plans for attending this hearing. (Personally I have

no idea why this was ever implemented in the first place.)

I hope my decision does not stop you from informing us of the hearing dates.

I know there are many people on Lyme Aid that do wish to attend and show

support to Dr . Limiting the information of dates and directions can

only serve to hurt Dr .

Thank you for your understanding.

Robynn

-Owner

Re: Dr - hearing confusion

> Thanks. I just did it and sent the letter from Dr.

> .

>

[Guest guest]

This is truly frustrating, I imagine, for most of us. Just as I had thought I

had gotten things figured out I found myself even more drawn into this mess as

TWO personal " factions " starting emailing me privately telling me that they were

the official spokespeople for Dr . I don't know who to believe at this

time nor do I have a desire to embroil myself in a power struggle.

My best advice is this: Do whatever you can to support Dr . If you can

contribute financially please do so. Be sure you send your money to the fund

being monitored by Dr 's legal team and to no one or no other support

organization.

If you can attend the hearing(s) please do so. I hope we will continue to learn

the dates of these events and someone will provide directions. At this time

there is no reason to email any private party for reservations or to RSVP. (If a

government official asks for such information in the future that will be easier

to deal with and simple to verify.) This is a public event that anyone can

attend. Behavior must be appropriate for such an event. This is a court of law

and not a rally. Your presence is what is making the statement, not shouting,

yelling or groaning. (This probably doesn't even need to be said, but I'll play

it safe.)

If you or your child is a patient of Dr , check in with him at your usual

appointment time to learn details from him or his staff. I do not believe Dr

has hired extra staff to answer the phone concerning hearing issues so

calling just for info MAY make more work for his staff. This will be a long

process and asking one or two quick questions about his hearing when you are

doing a scheduled appointment would most likely be appropriate.

I hope that helps those of you who have been as confused as I.

If you do attend the hearing(s) please let us know how it went. Those of who

can't make it would like to know what went on from as many different

perspectives as possible.

Thanks!

=)

Robynn

PS The following information was gleaned from other posts.

Hearing Date: May 25, 2006 9:00 AM at

Legislative Office Building

300 Capitol Avenue

Hartford, CT

Room 1-B

Driving directions

From I-84 Eastbound

Take Exit 48, Capitol Ave (stay in right lane of exit). Go right at end of

exit ramp onto Capitol Ave. and proceed past the Legislative Office Building

which will be on your right. Immediately past the building, take first right

and proceed past both the building and the parking garage beyond it. Continue

all the way to the back of the garage to enter for parking. There is a

covered walk way from the top level of the garage to the third floor of the

Legislative Office Building.

From I-84 Westbound

Take Exit 48, Asylum St. Go right at the light at the end of the exit, then

bear immediately left onto the start of Farmington Ave. Go a very short

distance on Farmington Ave. to the next light (YWCA is on the corner), and turn

left onto Broad St. Go through one stoplight, and past the State Armory

building which will be on your left. Immediately past the State Armory

building,

turn left into the Legislative Office Building access road, and then take your

next left. You will be heading toward the Legislative Office Building parking

garage. Continue all the way to the back of the garage to enter for parking.

There is a covered walk way from the top level of the garage to the third

floor of the Legislative Office Building.

From I-91 North or South

Take Exit 29A, Capitol Area exit, and proceed along the exit 29A connector.

You will come to a traffic circle at the end of this long connector road.

Proceed around the traffic circle, and turn right from the circle onto Elm St.

Follow Elm St. to the end, (you will see the State Capitol Building in front

of you). At the stop light at the end of Elm St., go left onto Trinity St.,

then go right at the next light onto Capitol Ave. The State Capitol Building

will be on your right. Proceed along Capitol Ave., going past the Capitol

Building, and past the entrance to I-84. You will also go past the Legislative

Office Building which will be on your right. Turn right into the entrance

immediately after the Legislative Office Building, and proceed past both the

building and the parking garage beyond it. Continue all the way to the back of

the

garage to enter for parking. There is a covered walk way from the top level

of the garage to the third floor of the Legislative Office Building.

From West Hartford, Route 44

Take Asylum Ave. (Route 44) from North Main St. in West Hartford. Proceed

along Asylum Ave. (Route 44) heading toward Hartford until you get to the Broad

St. intersection (The Hartford Insurance Group headquarters building will be

on your left). Turn right onto Broad St. and proceed past the State Armory

building on your left. Immediately past the State Armory building, turn left

into the Legislative Office Building access road, and then take your next

left, heading toward the Legislative Office Building parking garage. Continue

all

the way to the back of the garage to enter for parking. There is a covered

walk way from the top level of the garage to the third floor of the

Legislative Office Building.

Re: [ ] Dr - hearing confusion

This is difficult to say but it appears that there are warring factions in the

lyme community. I don't want to get specific. I've heard that more details on

this problem will be forthcoming.

I have to be vague without pointing fingers. It is also not my intention to

get anyone " in trouble " but the things themselves that are going on need to be

exposed sometime soon. It appears that some of those who seem to be on Jone's

side, really do not have his best interests at heart. Just because a group may

be a large organization does not mean they are totally on the up and up.

I think the best thing here is for each of us is to use our own judgement

and intuition. When trying to figure out what group to listen to, I have asked

myself, how could it hurt Dr. to have a large orderly attendence at his

Hearing. I have heard,,,,second hand... that he feels the patients and activists

are not supporting him.I also feel he may be being given false information and

advice.

It is illegal to have people register or sign up for attendance at a

hearing. Dr. does not use the computor so I feel he really does not have

much of a clue as to the commotion taking place and the issues involved. I feel

that those organizing the hearing attendence (which is illegal) know that lyme

people usually don't know till the last minute whether or not to attend. They

just don't know how they will feel till the last minute....so making people sign

up and reserve space very much discourages attendance. This makes no sense to

me. People in our CT support group have talked to those at the legislative

office building and they are not discouraging attendence. It was mentioned that

most of the building is open that day and other provisions can be made for a

larger crowd. We need to help Dr. and show support before it's too late.

Doesn't it make sense that we need to quietly but firmly support him when he

needs us the most? Let's use our common sense and not

be swayed by either " side " . It is up to us whether or not we go. We do not

need permission. I feel this may be a very important time for the Lyme Community

and we need to take a stand...peacefully and respectfully but we need to take a

stand before it is too late. So many people love and are grateful to Dr. .

Let's show him we care. If a choice has to be made between the Rally and the

Hearing...I say the Hearing comes first and is the most crucial.

We have to use our own judgement because there will be no straight answer.

There are two sides opposed to each other and it's not just about petty

arguements. There is some serious stuff going on which will eventually be

revealed. I , myself don't know all of the details concerning this but certainly

am beginning to get the general idea.

Margie T

[Guest guest]

This is truly frustrating, I imagine, for most of us. Just as I had thought I

had gotten things figured out I found myself even more drawn into this mess as

TWO personal " factions " starting emailing me privately telling me that they were

the official spokespeople for Dr . I don't know who to believe at this

time nor do I have a desire to embroil myself in a power struggle.

My best advice is this: Do whatever you can to support Dr . If you can

contribute financially please do so. Be sure you send your money to the fund

being monitored by Dr 's legal team and to no one or no other support

organization.

If you can attend the hearing(s) please do so. I hope we will continue to learn

the dates of these events and someone will provide directions. At this time

there is no reason to email any private party for reservations or to RSVP. (If a

government official asks for such information in the future that will be easier

to deal with and simple to verify.) This is a public event that anyone can

attend. Behavior must be appropriate for such an event. This is a court of law

and not a rally. Your presence is what is making the statement, not shouting,

yelling or groaning. (This probably doesn't even need to be said, but I'll play

it safe.)

If you or your child is a patient of Dr , check in with him at your usual

appointment time to learn details from him or his staff. I do not believe Dr

has hired extra staff to answer the phone concerning hearing issues so

calling just for info MAY make more work for his staff. This will be a long

process and asking one or two quick questions about his hearing when you are

doing a scheduled appointment would most likely be appropriate.

I hope that helps those of you who have been as confused as I.

If you do attend the hearing(s) please let us know how it went. Those of who

can't make it would like to know what went on from as many different

perspectives as possible.

Thanks!

=)

Robynn

PS The following information was gleaned from other posts.

Hearing Date: May 25, 2006 9:00 AM at

Legislative Office Building

300 Capitol Avenue

Hartford, CT

Room 1-B

Driving directions

From I-84 Eastbound

Take Exit 48, Capitol Ave (stay in right lane of exit). Go right at end of

exit ramp onto Capitol Ave. and proceed past the Legislative Office Building

which will be on your right. Immediately past the building, take first right

and proceed past both the building and the parking garage beyond it. Continue

all the way to the back of the garage to enter for parking. There is a

covered walk way from the top level of the garage to the third floor of the

Legislative Office Building.

From I-84 Westbound

Take Exit 48, Asylum St. Go right at the light at the end of the exit, then

bear immediately left onto the start of Farmington Ave. Go a very short

distance on Farmington Ave. to the next light (YWCA is on the corner), and turn

left onto Broad St. Go through one stoplight, and past the State Armory

building which will be on your left. Immediately past the State Armory

building,

turn left into the Legislative Office Building access road, and then take your

next left. You will be heading toward the Legislative Office Building parking

garage. Continue all the way to the back of the garage to enter for parking.

There is a covered walk way from the top level of the garage to the third

floor of the Legislative Office Building.

From I-91 North or South

Take Exit 29A, Capitol Area exit, and proceed along the exit 29A connector.

You will come to a traffic circle at the end of this long connector road.

Proceed around the traffic circle, and turn right from the circle onto Elm St.

Follow Elm St. to the end, (you will see the State Capitol Building in front

of you). At the stop light at the end of Elm St., go left onto Trinity St.,

then go right at the next light onto Capitol Ave. The State Capitol Building

will be on your right. Proceed along Capitol Ave., going past the Capitol

Building, and past the entrance to I-84. You will also go past the Legislative

Office Building which will be on your right. Turn right into the entrance

immediately after the Legislative Office Building, and proceed past both the

building and the parking garage beyond it. Continue all the way to the back of

the

garage to enter for parking. There is a covered walk way from the top level

of the garage to the third floor of the Legislative Office Building.

From West Hartford, Route 44

Take Asylum Ave. (Route 44) from North Main St. in West Hartford. Proceed

along Asylum Ave. (Route 44) heading toward Hartford until you get to the Broad

St. intersection (The Hartford Insurance Group headquarters building will be

on your left). Turn right onto Broad St. and proceed past the State Armory

building on your left. Immediately past the State Armory building, turn left

into the Legislative Office Building access road, and then take your next

left, heading toward the Legislative Office Building parking garage. Continue

all

the way to the back of the garage to enter for parking. There is a covered

walk way from the top level of the garage to the third floor of the

Legislative Office Building.

Re: [ ] Dr - hearing confusion

This is difficult to say but it appears that there are warring factions in the

lyme community. I don't want to get specific. I've heard that more details on

this problem will be forthcoming.

I have to be vague without pointing fingers. It is also not my intention to

get anyone " in trouble " but the things themselves that are going on need to be

exposed sometime soon. It appears that some of those who seem to be on Jone's

side, really do not have his best interests at heart. Just because a group may

be a large organization does not mean they are totally on the up and up.

I think the best thing here is for each of us is to use our own judgement

and intuition. When trying to figure out what group to listen to, I have asked

myself, how could it hurt Dr. to have a large orderly attendence at his

Hearing. I have heard,,,,second hand... that he feels the patients and activists

are not supporting him.I also feel he may be being given false information and

advice.

It is illegal to have people register or sign up for attendance at a

hearing. Dr. does not use the computor so I feel he really does not have

much of a clue as to the commotion taking place and the issues involved. I feel

that those organizing the hearing attendence (which is illegal) know that lyme

people usually don't know till the last minute whether or not to attend. They

just don't know how they will feel till the last minute....so making people sign

up and reserve space very much discourages attendance. This makes no sense to

me. People in our CT support group have talked to those at the legislative

office building and they are not discouraging attendence. It was mentioned that

most of the building is open that day and other provisions can be made for a

larger crowd. We need to help Dr. and show support before it's too late.

Doesn't it make sense that we need to quietly but firmly support him when he

needs us the most? Let's use our common sense and not

be swayed by either " side " . It is up to us whether or not we go. We do not

need permission. I feel this may be a very important time for the Lyme Community

and we need to take a stand...peacefully and respectfully but we need to take a

stand before it is too late. So many people love and are grateful to Dr. .

Let's show him we care. If a choice has to be made between the Rally and the

Hearing...I say the Hearing comes first and is the most crucial.

We have to use our own judgement because there will be no straight answer.

There are two sides opposed to each other and it's not just about petty

arguements. There is some serious stuff going on which will eventually be

revealed. I , myself don't know all of the details concerning this but certainly

am beginning to get the general idea.

Margie T

[Guest guest]

I'm starting to understand why Lyme advocacy leads nowhere.

[Guest guest]

I was there today and I was disappointed in the turnout for support!

Enough already.

I get very confused over the " rival factions " within the activist

groups who represent people like us that have suffered so much!

Enough already.

Let's be smart. I don't understand how we can allow ourselves to be

divided? Enough already. Don't forget the rule of war; to divide

and conquer.

Enough already.

I don't care which group is getting the credit. I don't care who

wants to take credit for any of the battles that we win. But I know

one thing for sure. If we don't unite as one voice in support of

each other we will never win the war.

Enough already.

Dr. has treated over 8,000 kids with Lyme. We didn't even have

1% of that number turnout. More importantly Dr. will not be

able to treat our kids for Lyme for ever. There is a major void in

good experienced Lyme Pediatricians. Dr. has taken it upon

himself to train the few brave Pediatricians that are willing to

accept the risk to treat our kids. Not even 1% of the total patients

that Dr. has treated.

Enough already.

Be well,

> I have received over a dozen messages recently concerning Dr

's

> hearings. The messages have different information, different

directions,

> and different requirements AND they are from a variety of people.

Many

> messages I have not sent through to Lyme Aid because I believe

wrong

> information at this critical time will hurt and not help Dr .

>

> Months ago an email came out saying only Ellen ellenluba@... would

be

> sending official updates about Dr 's situation. (Ellen has

not posted

> to Lyme Aid for quite some time.)

>

> Has that changed? Are multiple people now sending out the official

> statements from Dr 's office? And who is releasing the

critical

> information from Dr ?

>

> I would feel better sending messages through if there was only one

contact

> person as originally directed or if Dr would email me

directly with

> his multiple representatives. (It may not need to be said, but

anything Dr

> personally asks me to send I will send without hesitation.)

>

> There has been too much confusion over such an important issue to

allow

> multiple contradictory messages to continue to go through Lyme Aid.

>

> Is it possible for Dr to work with the leadership of a known

Lyme

> disease support organization to get out needed information? Many

leaders

> and/or presidents of support organizations are members of Lyme Aid,

I'm sure

> any one of them would be willing to take on this responsibility to

> communicate with Dr and let us know what he needs. Lyme Aid

has over

> 1400 members who would like to help, but we could better serve if

we

> received accurate information in a timely fashion.

>

> Please advise.

>

> Robynn

> -owner

>

[Guest guest]

,

What happened at today's event? I have heard that there will be no more

hearings until 2007. Is this true?

We need accurate information as to what happened.

THANKS so much!!!

=)

Robynn

[ ] Re: Dr - hearing confusion

I was there today and I was disappointed in the turnout for support!

Enough already.

[Guest guest]

June 22 is the next hearing . Dr. lawyer asked that we dismiss early after

Dr. Shapiro testified to a bunch of lies. They want more time to get their cross

examination together. There were about 70 people there and everyone was well

behaved. Dr. ' lawyer didn't get much time to speak but I guess they have

to take turns. Mr. Pollack will cross examine Dr. Shapiro next time

Margie

Robynn <Robynn@...> wrote:

,

What happened at today's event? I have heard that there will be no more

hearings until 2007. Is this true?

We need accurate information as to what happened.

THANKS so much!!!

=)

Robynn

[ ] Re: Dr - hearing confusion

I was there today and I was disappointed in the turnout for support!

Enough already.

[Guest guest]

I was extremely disappointed with the attendance at Dr. '

hearing yesterday, 60 - 70 people.

We should be able to easily fill a room that size and another as

well. (about 150 - 200 seats?, guessing)

The next hearing is June 22 at 9 am in Hartford, CT.

I sincerely hope we ALL get on board and finally work together to

build a turn out that will show Dr. how grateful we are for

what he has done and continues to do for children that no one else

will help.

HE MAY LOOSE HIS LICENSE TO PRACTICE MEDICINE.

He has a base of approximately 8000 patients. Only 60 or 70 people

showed up to support him. This is so sad to me.

I told Dr. a few years ago, " If anything happens and you need

people to show up en masse to support you, just let me know. I know

thousands are so grateful for what you have done for the children

they will come from anywhere, any time to support you. " Boy was I

wrong. Only 60 to 70 of you showed up for him yesterday. I know many

of those that did attend don't even have kids that are his patients.

Dr. ' hearings are public hearings, they are open to the

public. ANYONE can attend. You do NOT need to sign up, RSVP or

follow any formal requirement. It is NOT ok to control who is and is

not attending the hearings in ANY way. It is NOT OK to keep a list

of people attending the hearings.

If you do not believe me please do call Dr. office.

Make the call BRIEF.

Simply ask " Is it OK for me to come to the hearings? Does Dr.

want me to attend his hearings? "

203-772-1123

Please do not hold up the person on the phone. They have a full day

ahead of them.

The women that work, TIRELESSLY, for Dr. in his office have

lots to do but they want Dr. to SEE that people DO love him

and DO support him so they are willing to take extra phone calls to

reassure people.

Dr. WANTS people to come to the hearings. When you do not show

up it sends him a very clear message. It also sends the panel and

the community at large a clear message. The message that is being

sent, loud and clear?People do not care.

Dr. is a VERY humble man.

I am pleading with every one of you to show Dr. that you,

personally, do care. Come to his next hearing.

Massachusetts we need to fill at least one bus. Contact me

b10g7@...

This message may be shared widely. I hope it will be.

Kay Lyon

[Guest guest]

Robynn,

The hearing was basically straight forward. No surprises, their side

continued the questioning of their 2 experts. No suprises in their

testomonies. Not the proper standard of care and of course this was

not the proper way to dx Lyme. They were challanged on their second

witness, Dr. Shapiro.

The hearing stopped just after lunch for Dr. ' defense team to

prepare to cros examine their Lyme expert.

There was plenty of seating available in the court room and much more

in the cafeteria and other general areas.

The next hearing date was set for the end of June. I will post it

when I confirm, there was some questions about the Boards schedules.

Be well,

>

> ,

>

> What happened at today's event? I have heard that there will be no

more

> hearings until 2007. Is this true?

>

> We need accurate information as to what happened.

>

> THANKS so much!!!

>

> =)

> Robynn

>

>

> [ ] Re: Dr - hearing confusion

>

>

> I was there today and I was disappointed in the turnout for support!

>

> Enough already.

>

>

>

>