Florida Lyme Advocacy, Inc.
the National Lyme Disease Association
An Appeal to Save Florida Lives
and a Call For Medical Freedom
As a newly designated affiliate of the National Lyme Disease Association, I am writing you to ask that you read our national leader's updated requests on behalf of all loved ones, survivors, and doctors in the Lyme disease community.
I have had the very tragic, devastating experience of burying friends right here in Florida due to under-treated and untreated, later-stage Lyme disease. I also continue to struggle everyday with my own personal dynamics of highly neurological Lyme disease. My life and those of tens to hundreds of thousands of people each year are forever brought to a halt when this vicious, multi-system infection takes over.
Dreams are shattered, bodies crippled, and homes, life savings and lives, literally are lost.
I have listened to thousands of Floridians, alone, who cry, plea, beg me for any hope of finding the money to buy their medications, a knowledgeable doctor, or simply some hope they will walk again, work again, or literally survive at all.
Perhaps the most heartbreaking are the calls and emails of parents watching the methodical decay of beautiful, vibrant children being debilitated by unchecked disease when a treatment exists. A treatment, that is, that the IDSA (Infectious Diseases Society of America) doesn't want us to have and insurers don't want to pay for. The former being very deeply married to insurers historically.
It is tragic when unexplained suffering and illness befalls a productive member of our society. It is criminal when there are treatments, doctors and answers evolving and expanding everyday but are simply withheld in the name of "business" and year-end profit margins.
These are human lives we are talking about. I urge you as the founder and director of Florida Lyme Advocacy, Inc., to read the information below and consider any or all of the ways you can help those who continue to suffer in silence, negligence and betrayal.
I want you to imagine what it is like to look into the eyes of a wife and daughter and tell them how sorry you are they lost their husband and father, respectively, for "nothing"...
I want you to try and imagine crawling, literally, through nerve pain that feels like knives cutting through your skin or being set on fire from the inside out and realizing an anonymous corporate executive has arbitrarily determined that your life "doesn't count"...not in the record books of being sick or if you die. Your life, your courage, your "fight" and your death "don't count". It is, perhaps, the deepest betrayal and great measure of man's inhumanity to man to kick a helpless person trying to crawl across the floor or simply "be here" tomorrow. This is our profoundly sad common ground in the world of Lyme disease.
I thank you so very much as a survivor and one who has lost too many to this under-counted and under-treated growing epidemic public health crisis. For my NY friends, please consider keeping your eyes and ears open to the radio, TV, and potential rally mentioned below to be held in our collective old stomping grounds of southern NY...Perhaps you will walk or speak on my behalf!
Lori Hoerl (Founder and Director)
Florida Lyme Advocacy, Inc.,
31 N. 3rd Street, Floor Up, B, Fernandina Beach, FL 32034
(904) 491-7617 / firstname.lastname@example.org
Date: November 5, 2006
RE: Crime Against Lyme – Call to Action #2
NEW PRIORITY: Contact all of your FEDERAL legislators
- Phone/email your own US Congress person and your two US Senators by November 15 at their Washington, DC office only.
- Groups should contact all Federal legislators within their range (area they cover).
- US Reps. & Senators DC contact information www.visi.com/juan/congress/
- Tell them how Guidelines impact you/family/friends.
"I am a CONSTITUENT and I am calling to impress upon the Senator/Congressman how the new Infectious Disease Society of America Lyme disease Guidelines are detrimental to my family and OUR community.
They are going to enable my insurance company to deny coverage for antibiotic treatment that has significantly improved my quality of life. I will not be able to afford to pay out of pocket for this medication and I am concerned my health will decline further.
The previous IDSA guidelines created a situation that unjustly enabled state medical boards to investigate many Lyme literate doctors. This in turn caused many doctors to avoid and/or limit treatment for fear of persecution. These new more limiting guidelines will surely make this condition worse. I am afraid my family and I will no longer have doctors available to treat us.
The health of our entire community is at risk. Research has proven earlier diagnosis and treatment provide a better chance for complete recovery. These new guidelines state diagnosis is now by blood tests and/or an EM rash and no longer by clinical diagnosis. We all know these tests are unreliable and only 50% of people get the rash. This is going to create a situation that will delay treatment for thousands in our community and put them at risk of having chronic Lyme. This is going to put a financial strain on our community that we cannot afford.
Please make sure the Senator/Congressman gets this message and understands the severity of this situation. Thank you for your time."
We must continue to get signers onto the petition.
To show strength we need 50,000 signatures!
The petition now stands at about 11,000 signatures. We need many more since only numbers will show we have the clout necessary to turn this situation around and regain control of the diagnosis and treatment of Lyme disease.
This is for those 18 years and older to sign. Names and addresses will NOT appear on the Internet but will be printed out with the petition when it is ready to be presented to the appropriate entity. LDA never sells names or shares them with marketers. The petition will be used to influence government action. Remember, like you, LDA is all patients and families of patient's _ and all volunteer.
Continue contacts with your local media about the Guidelines
impact on you/family/friends.
When you contact the media, talk about your problems with the guidelines, (or your group's objections) and mention in a sentence that ILADS, the International Lyme & Associated Diseases Society, a professional medical organization, has written to have them repealed, and that the national Lyme Disease Association has a petition on its website for all to sign (add in web address).
History of New Guidelines and Actions taken:
October 2, 2006 The Infectious Disease Society of America (IDSA) issued new guidelines www.journals.uchicago.edu/CID/journal/issues/v43n9/40897/40897.html
- Chronic Lyme does not exist and treatment past 30 days is unwarranted
- Diagnosis is now based on a rash and/or lab tests (which are highly inaccurate). This new criteria will miss approximately half the cases and set the stage for a new generation of chronic Lyme sufferers.
October 10, 2006 The Lyme Disease Association issues press release
October 24, 2006 The International Lyme & Associated Diseases Society (ILADS) sent a letter to the IDSA demanding retraction of the Guidelines. www.ilads.org/press_releases.html
DR. SCHALLER NEITHER SUPPORTS NOR OPPOSES THESE ACTIVITIES AND DEFERS YOU TO THESE WEB SITES, THE MENTIONED PUBLIC ORGANIZATIONS, AND YOUR PERSONAL PHYSICIAN TO DETERMINE THE MERITS ABOVE.
HE HAS HOWEVER SEEN HIS FAMILY AND CHILDREN SUFFER TERRIBLY AFTER MANY SINCERE PHYSICIANS FOLLOWED THE IDSA GUIDELINES ON TICK INFECTIONS. WHILE IDSA OFFERS SOME USEFUL RESEARCH WITH OTHER INFECTIONS, HE HAS PERSONALLY FOUND THEIR SUGGESTED LYME TREATMENTS WERE INEFFECTIVE AND DID NOT WORK WITH HIS MANY FAMILY MEMBERS INFECTED WITH LYME AND OTHER INFECTIONS CARRIED BY DEER TICKS. DR. SCHALLER HAS RECENTLY PUBLISHED A MEDICAL TEXT TO HELP FILL IN THE LARGE HOLE IN AMAERICAN EDUCATION ABOUT TICK INFECTIONS, BY WRITING THE MOST UP TO DATE PATIENT AND PHYSICIAN BOOK ON BABESIA, WHICH IS A COMMON CO-INFECTION CAUSING SEVERE FATIGUE AND FEVERS OF UNKNOWN ORIGIN. THE NOTION THAT DEER TICK BITES ARE VIRTUALLY STERILE AND ONLY PASS ONE BACTERIA IS FLAWED. DEER TICK BITES ARE "DIRTY" AND MANY ORGANISMS CAN BE PASSED.