Re: Re: We, or Someone, but not Me.

October 4, 2006

God bless you, Anita. Can you imagine what might be possible if more Lymies did

the same? We are thousands. United, we can turn the IDSA on its tushie.

I am relatively new to Lyme Disease. Like most of us, I have focused on

understanding the disease and figuring out how best to get treated. I am just

getting to understand the politics of it all.

The one thing I am certain of is, we *all* need to take part in the solution.

Those who toil endlessly for us will eventually grow tired and embittered if we

do not fight at their sides.

I can make it easier. If anyone wants to send a letter, but has trouble with

the words, I will help. Need an email address? I'll find it. Want a copy of

the latest article? I'll send a link.

Here is the article we're going after today:

http://www.newsday.com/news/printedition/stories/ny-hsrail034916289oct03,0,99700\

1.story

And here is the email address for letters to the editor: letters@....

Letters must have fewer than 250 characters. You must include your mailing

address and phone numbers (day and evening). No attachments - just type it

directly into the email message.

Together, we can draw a line in the sand.

husbandwcld <husbandwcld@...> wrote: I personally have sent at least 100

letters to newspapers, around 50

to news stations, some to radio stations, countless to Congress,

Senators, Talk shows. You name it, I have written to including the

President 4 or 5 times, CDC, NIH, Every Hospital in East TN, Every

Doctor that said my husband was " just faking it " or " it is

depression " or best yet " it is post traumatic stress disorder " . I

even wrote to several plasma donation centers across the country

stating that my husband has Lyme disease and wanted to know if it

was still safe for me to donate....try it, see what your results

are. Every time my husband and I go out together and we meet some

one new and they ask how he lost his hearing and voice, I tell them

it was due to Lyme disease, because the doctors say it was the

treatment, (well, even if it was the treatment, it is still the Lyme

that caused it in the long run). I had even thought about painting

my SUV lime green and printing some kind of statement on it.

I have started writing a story about how Lyme has affected my

family, I plan to see how much it will cost me to run it in the

newspaper since they will not do one for free. I personally do not

know what else to do.

anita

" Something needs to be done. "

>

> " Someone should do something. "

>

> " Can someone who has time please take care of this? "

>

> " This is wrong. "

>

> We read this all the time in these groups. People constantly

complain (and rightly so) that things need to change. People need

to be educated. We need to get more people on our side. We need to

get our message out there.

>

> But how many here have actually done something about it? How many

have written to our congress? written to newspapers? gone to Dr.

' hearings? How many have stood up to their (non-LLMD) doctors

and told them they are letting us down? How many have provided

their PCPs with Burrascano's treatment guidelines? How many have

participated in community education? How many have donated to Dr.

' legal defense fund? How many have donated to ILADS? to the

Columbia University Lyme Disease Research Center? to Open Eye

Productions?

>

> We are sick, we are exhausted, we are broke, we are in pain, we

can't think straight, and we are apathetic. The apathy is one

reason why we are ignored. We care, but not enough to move

ourselves past the pain and the fog into action. We wait for

someone else to do it for us.

>

> If you are well enough to read, and perhaps post here, you can

write a letter to the editor whenever you read an article that needs

comment. It doesn't have to be perfect. It is OK, for example, to

simply express sadness that the IDSA has its head up its ass. (I

might choose better verbage, but you get the point.)

>

> We are only strong if we act in numbers. I'll send a letter to

the editor tonight. Anyone else?

>

> ---------------------------------

> Messenger with Voice. Make PC-to-Phone Calls to the US (and

30+ countries) for 2¢/min or less.

>

October 5, 2006

Dawn,

I completely understand the apathy - it's part of the disease. I think we have

to understand that this disease affects each of us in different ways, and the

fear and depression and apathy are much harder to overcome for some people than

for others. I feel very fortunate to be able to function as well as I do.

Even so, if we want to get better, if we want things to change, we have to act

in numbers. That means even our most ill have to do whatever they can. If they

can simply sign a pre-written letter, it will help. And if anyone wants a

pre-written letter that they can call their own, I'll do my best to write it.

I must have misunderstood the request for letters for Dr. Burrascano. I thought

you wanted letters from patients and collegues. I'd like to think that many of

his patients are probably well now, not keeping up with Lyme lists, and not even

aware of his retirement. And many of his current patients are completely

thrown, scrambling to find new doctors and feeling frightened about the future.

So, perhaps that leaves you with the few who are well enough to be thankful, but

not so well as to have moved on.

If you want letters from *anyone* in the Lyme community, I'd be honored to thank

him. His treatment guidelines were my bible a year ago, when I knew almost

nothing about a disease I suspected I might have. I still look back at them

when I have questions, and I give them to anyone who is just starting down the

Lyme Wars road.

Thank you, Dawn, for all of your good work. I hope you can make a living and

pay for your treatment by doing a good thing for all of us.

Dawn Irons <gratefulwife2brad@...> wrote: ,

I so appreciate your encouragement on this issue!

I was frustrated at the lack of LL information out in the public arena so I

decided to start my own media outlet! The Public Health Alert, now just 4

issues old, comes out monthly. I just got contacted from ILADS yesterday who

ordered 500 copies for their medical conference at the end of the month. Last

week I got an order of 1000 copies from a doctor in New York...so the word is

getting out!

But what I found terribly frustrating was when I contacted several of the

online Lyme communities that are very prominent in the Lyme world to ask for

letters of support for Dr Burrascano's retirement and farewill issues...and

repeatedly put the letters to the public for his patients and professional

colleagues for free space in the paper to give him thanks and well wishes as he

moves into the research phase of his career...I received a whopping THREE

letters.

How sad is that for the man who pioneered our TREATMETN AND DIAGNOSTIC

PROTOCOLS!!!

I certainly do not understand the APATHY that comes with this disease. I am

as sick as the next person...but my illness and anger motivate me to DO

SOMETHIGN about it!

I do want to thank the 2 ladies who sent donations to the PHA when a health

fair in CT wanted copies of the paper but was out of budget to afford the

mailing costs...those 2 donations cover all but $12 of the postage.

I have had to go into my own pocket to get the paper cost printed each month

since we dont yet have enough advertisers to cover ALL the printing...this next

issue is the first issue that was fully funded. Then there was one woman who

was upset with me because I do hope someday to earn enough money to help offset

my medical expenses which are currently at $1200 a month (all cash out of

pocket).

I just want to help the Lyme community and hopefully be able to afford to

continue treatment myself...so it really frustrated me that someone would be

upset that I am trying to make a living doing the only thing I know how to

do--journalism!

Somedays I just scratch my head...I just dont get it!

Thanks for the encouragement to ACTION!

Dawn

October 5, 2006

Well we appreciate your work and understand. No one understands better

than those who are going through the same thing.

At 03:53 PM 10/5/2006, you wrote:

>,

>I so appreciate your encouragement on this issue!

>I was frustrated at the lack of LL information out in the public arena so

>I decided to start my own media outlet! The Public Health Alert, now just

>4 issues old, comes out monthly. I just got contacted from ILADS yesterday

>who ordered 500 copies for their medical conference at the end of the

>month. Last week I got an order of 1000 copies from a doctor in New

>York...so the word is getting out!

>

>But what I found terribly frustrating was when I contacted several of the

>online Lyme communities that are very prominent in the Lyme world to ask

>for letters of support for Dr Burrascano's retirement and farewill

>issues...and repeatedly put the letters to the public for his patients and

>professional colleagues for free space in the paper to give him thanks and

>well wishes as he moves into the research phase of his career...I received

>a whopping THREE letters.

>

>How sad is that for the man who pioneered our TREATMETN AND DIAGNOSTIC

>PROTOCOLS!!!

>

>I certainly do not understand the APATHY that comes with this disease. I

>am as sick as the next person...but my illness and anger motivate me to DO

>SOMETHIGN about it!

>

>I do want to thank the 2 ladies who sent donations to the PHA when a

>health fair in CT wanted copies of the paper but was out of budget to

>afford the mailing costs...those 2 donations cover all but $12 of the postage.

>

>I have had to go into my own pocket to get the paper cost printed each

>month since we dont yet have enough advertisers to cover ALL the

>printing...this next issue is the first issue that was fully funded. Then

>there was one woman who was upset with me because I do hope someday to

>earn enough money to help offset my medical expenses which are currently

>at $1200 a month (all cash out of pocket).

>

>I just want to help the Lyme community and hopefully be able to afford to

>continue treatment myself...so it really frustrated me that someone would

>be upset that I am trying to make a living doing the only thing I know how

>to do--journalism!

>

>Somedays I just scratch my head...I just dont get it!

>

>Thanks for the encouragement to ACTION!

>

>Dawn

>

October 5, 2006

hi dawn. where can i get these and what kind of help do you need? kurt

Dawn Irons <gratefulwife2brad@...> wrote: ,

I so appreciate your encouragement on this issue!

I was frustrated at the lack of LL information out in the public arena so I

decided to start my own media outlet! The Public Health Alert, now just 4 issues

old, comes out monthly. I just got contacted from ILADS yesterday who ordered

500 copies for their medical conference at the end of the month. Last week I got

an order of 1000 copies from a doctor in New York...so the word is getting out!

But what I found terribly frustrating was when I contacted several of the online

Lyme communities that are very prominent in the Lyme world to ask for letters of

support for Dr Burrascano's retirement and farewill issues...and repeatedly put

the letters to the public for his patients and professional colleagues for free

space in the paper to give him thanks and well wishes as he moves into the

research phase of his career...I received a whopping THREE letters.

How sad is that for the man who pioneered our TREATMETN AND DIAGNOSTIC

PROTOCOLS!!!

I certainly do not understand the APATHY that comes with this disease. I am as

sick as the next person...but my illness and anger motivate me to DO SOMETHIGN

about it!

I do want to thank the 2 ladies who sent donations to the PHA when a health fair

in CT wanted copies of the paper but was out of budget to afford the mailing

costs...those 2 donations cover all but $12 of the postage.

I have had to go into my own pocket to get the paper cost printed each month

since we dont yet have enough advertisers to cover ALL the printing...this next

issue is the first issue that was fully funded. Then there was one woman who was

upset with me because I do hope someday to earn enough money to help offset my

medical expenses which are currently at $1200 a month (all cash out of pocket).

I just want to help the Lyme community and hopefully be able to afford to

continue treatment myself...so it really frustrated me that someone would be

upset that I am trying to make a living doing the only thing I know how to

do--journalism!

Somedays I just scratch my head...I just dont get it!

Thanks for the encouragement to ACTION!

Dawn

October 5, 2006

**********Kurt....did you get your package??

October 5, 2006

With my informational list found at

Robynns_Lyme_List/ I send out article

almost every day. This is an excellent resource for finding articles to

write about.

So is: http://www.topix.net/health/lyme-disease .

Don't forget to thank the authors and newspapers that are writing our side

of the story! Praising good work is just as important as denouncing the

bad.

Short letters do make a differenece! You don't have to know all the subtle

political workings in the Lyme world to tell YOUR story.

=)

Robynn

Re: [ ] Re: We, or Someone, but not Me.

God bless you, Anita. Can you imagine what might be possible if more Lymies

did the same? We are thousands. United, we can turn the IDSA on its tushie.

I am relatively new to Lyme Disease. Like most of us, I have focused on

understanding the disease and figuring out how best to get treated. I am

just getting to understand the politics of it all.

The one thing I am certain of is, we *all* need to take part in the

solution. Those who toil endlessly for us will eventually grow tired and

embittered if we do not fight at their sides.

I can make it easier. If anyone wants to send a letter, but has trouble with

the words, I will help. Need an email address? I'll find it. Want a copy of

the latest article? I'll send a link.

Here is the article we're going after today:

http://www.newsday.com/news/printedition/stories/ny-hsrail034916289oct03,0,99700\

1.story

And here is the email address for letters to the editor:

letters@....

Letters must have fewer than 250 characters. You must include your mailing

address and phone numbers (day and evening). No attachments - just type it

directly into the email message.

Together, we can draw a line in the sand.

October 6, 2006

Dear Dawn,

You are doing really important and great work with your Public Health Alert. If

even one person gets the right diagnosis and treatment because of your

newsletter, then you have made a difference. And if one medical professional

can be persuaded to really see what is happening w/ Lyme, and treat patients

accordingly, then you have made a difference.

I am just so grateful that you are able to prepare and publish this newsletter

despite being ill yourself. The pieces you and others have written provide a

critical service for the Lyme community.

Thanks for your service.

Margh

[ ] Re: We, or Someone, but not Me.

,