Re: What is happening?

January 28, 2000

Dear Ellen,

I believe all the issues are just as important as the doctor harrassment.

There are people out there who are scared about their symptoms, etc, and come

here for answers and support. At one point, all I saw on here were letters

about doctors and I almost unsubscribed. I work for a LLMD and I live with

the fight every day by sending out letters and calling insurance companies

for patients and going by the book at our office for the doctors sake. While

yes, that is an emergency situation, so is the person who is depressed, in

pain, and despondent and looking for a place to turn...and that is what I

thought this list was really about. Let's try to keep a nice balance of it

all.

Blessings,

Lorraine

January 29, 2000

Dear Ellen,

I agree with you. I am terrified. I have done a lot to help this crisis

but am worried because I want the whole world to help!! Even I have been very

ill and cannot do everything plus I am moving next week. When my very life is

threatened, it tends to make me move. I think most of us do realize this is

" it. " I hope so. Both you and I are out of luck cause we are being tx by two

of the best. My LDSG was instructed to do what needs to be done. Hoping many

of us who are able at all can keep the pressure on. I do find it hard to

discuss anything else.

Scared,

Helen

January 29, 2000

Ellen

First of all, thanks for all you do in keeping folks informed with the

information they need to be advocates for LD.

Second.....what IS happening? I have been dying to hear an update of what is

going on from those in the know.......like what has been able

to do, have there been any meetings or discussions, what is the next step. I

have been " surfing " to find out what I can, but not coming up with much.

I have not been able to be active for the last 10 days, due to MAJOR herx,

blew my midline, and had to have PORT put in yesterday. Thankfully the herx

broke Thursday so I was not feeling too badly when I went for the surgery. I

am feeling almost human today, so hope to resume letter writing very soon.

I can feel your frustration, and imagine it is shared by all.

Happy

January 29, 2000

In a message dated 01/29/2000 7:48:44 AM Eastern Standard Time,

Cheers4U@... writes:

<<

I believe all the issues are just as important as the doctor harrassment.

There are people out there who are scared about their symptoms, etc, and

come

here for answers and support. Let's try to keep a nice balance of it

all. >>

Hi Everyone,

I agree with Lorraine...I have been on this list for awhile but have been a

" lurker " lol

Recently the postings have not generated much discussion on how everyone is

dealing personally with this disease. I can't be critical though since I

have not contributed to the list.

It is informative to hear what treatment everyone has received & the sharing

of that information can help you in your own course of treatment if your

doctor is open-minded. I can sense the frustration & the fear of not being

able to continue to find a LLMD who is either knowledgable or not fearful of

treating Lyme patients.

I work with Lorraine & echo her sentiments exactly about dealing with

insurance companies on a daily basis, the frustration of the patients, the

frustration of the dr. being told by those companies what antibiotics he can

use, etc.

I do have personal knowledge of this also...8-9 years ago my son was treated

for almost 2 years with orals & IV for LD. He is now 20, but never fully

regained his health & has many arthritic symptoms...he just tested positive

for both forms of Ehrlichia, in the chronic stage. And I have been friends

with Lorraine for years & know what she went through with all her symptoms,

her eventual diagnosis & her course of treatment the past 10 months. For

myself, I have been on Mepron & Dynabac for almost 2 months now...whenever

that course of treatment is done I will have to take doryx for the Ehrlichia.

I guess that is a long enough introduction! lol

Take care

Deb

January 29, 2000

Ellen,

I've been worried about the lack of discussion as well. I am EXTREMELY

concerned about what is happening with H., B. et al. I do not see these

docs, yet I realize that this poses a DIRECT threat to my own health and

those I care about. And these docs have done so much for lymies that I

personally know I cannot do enough to try and help that would show my

thanks. But, I gotta do all I can. They are real troopers, and we MUSST

be as well...we have no choice and no excuses. We are all sick.

To help people keep focussed, here is the CURRENT plan of attack:

1. continue to write to the " NY 5 " (hannon, gottfried, colman, bruno,

novello). Get everyone you know to join in. If need be, use the petition

at: http://www.aero-vision.com/~cheryl/petition3.html

Tell em and then tell them what you what you told them, and then tell them

what you told them you told them. Don't worry if you have a lymebrain and

can't organize your thoughts...the important thing is to WRITE...anything!

2. continue writing letters to editors

3. set up meetings with local reps. Everyone. Call and get the meeting

set up, then ask for help for what to do at the meeting if you are

uncertain. That's what I did anyway. The goal is basically just to tell

your story and make a friend...perhaps bring in scientific evidence in the

process.

We lymies must not look like we give in. We aren't going away.

I met with hannon's office yesterday with 4 others. While we were

received very well, I noticed the importance of really keeping the heat

on. We need more than for them to show interest, we need them to take

action.

> From: ellenlu@... (Ellen Lubarsky)

>

> I am getting really worried at the lack of discussion on the mailing

> lists about doctor harassment. We are very close to losing our medical

> care. Doctor H. who is the one who has used flagyl and has been the

you are right, is an extreme emergency.

> I'm sorry to be crabby and a pest, but this is an emergency.

we need you ellen, don't think you're a crabby pest. this is sooo

important. no one could ever emphasize that enough.

Folks, I (and I believe ellen too) am barely able to see straight

anymore. But we are not giving in. Perosnally, I would greatly

appreciate it if you can share your letters to help motivate others to

keep writing, sharing ideas what you are writing about, and so on.

thanks. =o) And arrange groups to meet with your local reps. And here I

go, telling you all what I told yas. lol

tata

January 29, 2000

Hi Ellen,

Maybe ask for an update, and a next step.

We can only expect the first meeting with politicians

to be a way of appeasing us, hoping we will go away.

This is the game. It's what we do after the meetings

that matters, if we want to be taken seriously.

To get to the politician's attention we will need to outrage the larger numbers

of people not infected. Of course there is only one way to do this and that's

media. So I do support 's suggestion of writing the New York papers and

putting it all over the boards, asking people to circulate this request.

As you know I've been working all year with Mike Donio, advocate from the

People's Medical Society. To give you an example of the time frame, I wrote him

in February '99, met with him in May with support groups, asked for our stories

in June for a 20/20 producer.

They turned us down but I continued to update Mike in case he should be

contacted by another interested producer. I make it a point not to let more than

four weeks go by between contacts. I usually update him on a weekly basis. I

never wait for him to contact me. Trouble is how many of us can keep us this

persistence, or pestering as you call it? I keep my communications focused,

patient, polite and professional. Nice guy Mike always replies quickly, and is

always willing to help.

I admit it might be easier for me to be

a pest, as I have a corporate sales background and am sort of thick skinned. My

Lyme/Babesia/hypothyroidism have been treated for many years, so I am able to

keep up this pace, but I sacrifice a lot in my life to do this and help run two

support groups. During the last year my widowed mother had major surgery and a

relative passed away. My husband has Lyme/Babesia and he's self employed. So

sure, there are lots of days I'd like to quit playing advocate/pest, it gets old

fast, but somebody has to do it, and if we don't who will?

Good news!

Our hard work is starting to pay off, I am currently waiting for word from a

major news program

producer, and this time it looks very promising. I can tell you protesting is

key in getting media attention. Mike Donio told us in May protesting would

probably be necessary. Lots of people write letters, not many are willing to

publicly protest, or keep up the writing campaign. Media needs a current action

to report along with the literature,unfortunately letter writing is not enough

to interest them. They wait for a protest,shots fired, death.

So here's a few suggestions

My approach is to expect the worst, plan for the best, and always have a back up

plan.

Due to our limited energy, let's keep focused on NY as that is where the

greatest need is now.

Keep up the writing to NY politicians and newspapers, but I think we will need

to do several blitzes over a period of months to the same NY

politicians/newpapers in snail mail, fax and phone calls to get their serious

attention,including the attorney general's office which over sees OPMC. We need

to disrupt their work and negatively affect their bottom line, show them we mean

business.

I believe with everyone's persistence, media and politics will come together

very nicely in the next few months.

Thanks for all the updates, addresses and organization, it has made my job much

easier.

Mac Namee

<<Message: 4

Date: Fri, 28 Jan 2000 23:34:32 -0500 (EST)

From: ellenlu@... (Ellen Lubarsky)

Subject: What is happening?

I am getting really worried at the lack of discussion on the mailing

lists about doctor harassment. We are very close to losing our medical

care. Doctor H. who is the one who has used flagyl and has been the

most active in studying co-infection comes up for his administrative

hearing in a few weeks. Doctor Burrascano's will follow. If we lose

these MDs, or if they are even disciplined, we will not be able to find

any MDs who will be willing to risk their licenses to treat us. We can

kiss any research about chronic Lyme disease good=bye.

We are in the middle of a life and death crisis and people are talking

about J. Fox??? Aren't we going to be our own spokespersons?

Is there a quiet underground working on this that I am not aware of?

I'm sorry to be crabby and a pest, but this is an emergency.