Re: We, or Someone, but not Me.

October 4, 2006

I sent mine. Anyone else?

DeMarco <ponyrubs@...> wrote: " 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?

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October 4, 2006

Thank you for the pep talk, . I agree with you wholeheartedly. I have

been posting for a year about this exact issue. I am not only saddened by the

IDSA Guidelines, but also by the apathy you speak of.

I formed a non-profit last year with the express purpose of helping Lyme

disease patients nationwide in paying for their treatment. We hold public

charity status with the IRS. Donations are tax-deductible. I asked everyone on

these Lyme groups to donate a mere $5.00 to help their fellow Lymies, and only a

handful have responded.

It is my position that if an organization existed to provide financial

assistance to Lyme patients, each and every Lyme disease patient could make a

donation to the fund. Of course, L.E.A.P. will not be able to provide financial

assistance to every Lyme patient, but we are currently working with a couple of

patients in Arizona and in another state to help them. I am contacted by

patients all the time asking for assistance, and we do not have enough funds to

help themL.E.A.P. Arizona exists for this purpose, and we do not limit our

assistance to patients in Arizona only.

Again, I plead with each and every Lyme patient on this list and others, along

with their supportive family members and friends, to find it in your hearts to

GIVE to others. Donations can be made directly on our website through PayPal at

www.leaparizona.com. I am anxious to write checks to our registered patients

for their medical bills!!! Won't you please help me do this???

I still cannot understand the lack of generosity on the part of Lyme disease

patients, who know all too well how difficult it is to get their treatment paid

for. I would think that all Lyme patients could donate $5.00 each to build up

this fund to help each other.

, I am going to pick apart the IDSA Guidelines point by point and forward

my rebuttal to the news media. I will be doing this during the next week.

Thank you for your much-needed comments. And thank you for writing your

letter.

With best wishes to all,

Tina J.

President

L.E.A.P. Arizona

Lyme Education Awareness Program

www.leaparizona.com

480-219-6869 Phone

P.O. Box 2654

Mesa, Arizona 85214-2654

DeMarco <ponyrubs@...> wrote: