posted
I am posting the text of an email which I have sent out so that others may borrow from it to do the same. The letter which I borrowed was written by the Founder and Director of Florida Lyme Advocacy, Inc. and was used in my email and posted here with her permission.
I hope this helps some of you get the word out to your friends and family.
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It is generally believed that people rarely, if ever, die from Lyme disease, but you need to understand that they do, and it is not especially rare. I don't know any who have, but I know people who do. And I'm here to tell you that if you are ever infected, even if Lyme disease does not kill you, you may reach a point when you wish that it would.
And now the Infectious Disease Society of America and the CDC are working together to prevent the few doctors brave and smart enough to treat chronic Lyme disease from access to treatment that has saved the lives and lifestyles of thousands, possibly millions, who suffer from Lyme.
Please take a moment to read the letter below written by a fellow Lyme patient. (I am passing it along with her permission.) Below that is information about how to sign a petition sponsored by the Lyme Disease Association ( www.lymediseaseassociation.org).
Even if you do not have time to read the letter all the way through, please click through the link near the bottom of this message and sign the petition. It will literally take you only 30 seconds.
For more information about Lyme disease and the medico-political controversy, please refer to www.standupforlyme.org .
Suzanne
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To my personal family and friends, I hope you will read the following and take 2 minutes to sign on to a petition that has to do with my life and those living with chronic Lyme disease, literally.
As many of you know, I lost my life savings and the greater part of my 30's to fighting disabling, progressive Lyme infection and its co-infections. Because I was mis-diagnosed and went undiagnosed for so long (the norm); I was bedridden for 2 years, and now spend every day smiling, pushing through and many days scraping through nerve pain that feels like I am burning to death from the inside out...this is the permanent nerve damage that will always be a part of my life, along with organ damage and new developments that threaten to one day disable and even end my life prematurely.
Now, the Infectious Diseases Society of America who has clearly documented financial ties to the insurance industry and is currently partnering with the CDC and pharmaceutical industry has successfully published guidelines being endorsed by the CDC that effectively shut down treatment and access to the very medications that turned my disabling neuropathies, demylinating nerves, blurred vision and other systemic deterioration into a slow turn toward recovery.
The reasons are far too convoluted and historically deep to fully explain why the CDC and IDSA are going out of their way to cover up a disease that they have allowed to become epidemic. Some day I can tell you the entire ugly truth if you care to know.
In essence, however, this petition asks that the clinical expertise of world leading experts treating later-stage, chronic, life threatening Lyme disease and its co-infections "in the trenches" to be the guiding force in what is best for each individual patient. It is asking that the doctors who know the most about this scope of disease and the most about their patient be allowed to provide all the options available as our legal right to informed consent, as well viable treatments that have pulled people back from psychotic state of brain involvement, out of wheelchairs, off walkers and back from near death. The treatments that, without which, sadly thousands of died.
If we do not have these IDSA guidelines dismissed, revised or formally rejected by the CDC, I and millions of Lyme sufferers around the world will listen to our doctors who have work tirelessly with us to save our lives, tell us they have the medications and treatments to help us walk, work and live; but cannot give them to us any longer. The few experts left who have written off our balance bills, lost their licenses and livelihoods to politically backed witch hunts will have their hands tied from offering clinical expertise, diagnosis and treatment.
In a nut shell, physicians who have NEVER treated later-stage, Lyme disease (because they DON'T EVEN BELIEVE IT IS REAL!) are now dictating what medication and treatment options I can have; never meeting me, knowing this disease or having knowledge of newer, better treatments that have evolved as recently as the last year!
PLEASE!!!!!!!!!!!!!!! Read the message from our national president who nearly lost her own daughter to this disease and click two times; once to go the LDA web site and once more time to sign on.
Without my medication, my disease will move forward as if my life, my courage, and my desire to live doesn't matter. So, too, hundreds of thousands of newly-infected to come will never be treated. They will suffer HORRIFIC, unnecessary pain, disability and even death. Parents will lose their children, children will lose their dreams, and undiagnosed and untreated Lyme infected will donate infected blood to pass our disease to you and your loved ones and friends.
What is occurring in the Lyme community at the hands of the CDC, Public Health Dept's nationwide, IDSA, and insurance industry is nothing short of legalized homicide. I have the thousands of patient records and photos to prove it...all the lives gone when treatment existed.
We in the Lyme community are reliving the tragic history of early AIDS patients. PLEASE SIGN THIS PETITION. We deserve to live after all we have suffered. We paid our insurance in good faith that our country would value our lives God forbid we ever got sick. We have learned quite the opposite.
Please help us stop the negligence, fraud and human atrocities that are mounting in epidemic proportion among the Lyme disease community in our nation as well as worldwide.
Thank you so much, L*****
-----Original Message----- From: LYMELITER@ To: LYMELITER@ Sent: Mon, 23 Oct 2006 6:14 PM Subject: URGENT IMMEDIATE ACTION REQUIRED
Everyone,
I ask that you please sign and ask all you know to sign onto our petition online. The Infectious Diseases Society of America has put all guidelines which are effectively going to stop ALL long term treatment for Lyme disease. Patients already are being affected and it has only been 2 weeks that they have been out.
My family and friends with Lyme will no longer be able to be treated nor will yours. All clinical discretion for doctors is prohibited. This means that doctors will no longer be able to diagnose Lyme disease using their judgment but will only be able to use a bullseye rash or positive bloodwork. Everyone knows you can test negative and still have Lyme disease and that bullyseyes only occur in less than 50% of patients but now docs will be afraid to diagnose that way because these guidelines effectively prevent it because the doctors will be brought before medical boards at a greater rate than is now happening.
Treatment options not to be used are spelled out, whole classes of drugs, alternative treatments even supplements are listed not to be used.
Everyone needs to sign to stop this travesty which will prevent hundreds of thousands of people nationwide from receiving appropriate diagnosis and treatment for Lyme disease.
The signing process is simple.
I thank you in advance for your help in this serious healthcare/human rights issue.
Pat Smith, President Lyme Disease Association, Inc. PO Box 1438 Jackson, NJ 08527 888-366-6611 information line 732 938-7215 fax www.LymeDiseaseAssociation.org
-------------------- Suzanne Shaps STAND UP FOR LYME Texas (www.standupforlyme.org) (Please email all correspondence related to protecting Texas LLMDs to [email protected] with copy to [email protected]) Posts: 977 | From Austin, TX, USA | Registered: May 2004
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bettyg
Unregistered
posted
Suzanne,
2 great letters below! I'll try again with my family/friends/classmates/ and other lists I have including my CHRISTMAS list of folks.
Do you happen to know if Pat is going for any certain no. of posts by a DEADLINE DATE? *************************************** Thanks Suzanne, Bettyg
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I don't know any more than what is stated in Pat's message above, sorry.
-------------------- Suzanne Shaps STAND UP FOR LYME Texas (www.standupforlyme.org) (Please email all correspondence related to protecting Texas LLMDs to [email protected] with copy to [email protected]) Posts: 977 | From Austin, TX, USA | Registered: May 2004
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