The controversy over Lyme Disease update….a gathering storm?
Donna Hamilton's Note
I wanted to thank all of you who wrote responses to my blog entry about contracting Lyme Disease…the more I’ve read about this disease, and it is scary, let me tell you…the more I realize how fortunate I am to have 1. developed a rash, and 2. gotten treatment right away. I was so happy when I recently took my last dose of Doryx!!( And it was expensive…$150 even with prescription coverage..the lady at Giant Pharmacy said “whew” when she rang it up-I soon found out why.) These are just a few comments I’ve received….from Lucy:
“Dear Donna,
Thank you for your anticipated upcoming effort to educate others concerning Lyme and tick borne diseases.I am happy to hear you got the rash so it could alert you to the fact you had a problem. I am also happy to hear and that you saw the rash and acted promptly (approximately 50 percent of those infected don’t get the rash in Maryland- and less than 10 percent of children get a rash).I am thankful that your doctor was able to recognise the rash and you were treated promptly. (This isn’t always the case and the rash is often misdiagnosed as a spider bite or ring worm or some other malady.)”
And oddly enough, before I saw my doctor, I thought maybe it was a spider bite too!
Thought this might interest you… and your cankles.
- ~smile~
- Press Release- Lyme Disease Education and Support Groups of Maryland
- July 27, 2009 – The Infectious Diseases Society of America (IDSA) Lyme Disease Review Panel will hear testimony from both sides of the Lyme disease debate on Thursday, July 30, 2009, as part of an anti-trust investigation settlement agreement.
- The open hearing will be in Washington, DC and will be aired live over the internet from 7:40 AM (registration) until 5 PM.
- The presentation will be archived for one year on http://www.idsociety.org
- The hearing stems from CT Attorney General Blumenthal’s investigation, which uncovered “serious flaws” in the IDSA’s Lyme Disease Guidelines development process in 2008.
- It was determined the IDSA authors had multiple conflicts of interest and had excluded scientific evidence.
- In spite of the investigation’s conclusions, the IDSA Lyme Disease Treatment Guidelines continue to be used by a dwindling number of doctors, including some at Johns Hopkins (home to several IDSA Guidelines authors, editors and spokesmen).
- They are also heavily relied upon by numerous health insurers as a basis to deny reimbursements.
- Scientific evidence refuting IDSA’s theories has been submitted (over 2,000 pages of analysis and research by ILADS alone) and oral summaries will be presented by both sides the day of the hearing.
- The IDSA adamantly denies persistent infection as a viable reason for the continuing symptoms in chronically ill Lyme patients and states additional antibiotics treatment should not be an option.
- Other than palliative care, they recommend against any and all treatment options (from vitamins to different classes of antibiotics) stating there is no such thing as chronic Lyme.
- The International Lyme and Associated Diseases Society (ILADS), American Association of Physicians and Surgeons (AAPS), German Society of Lyme Borreliosis and the Lyme Disease Action (UK) are a few groups that have publicly opposed the IDSA’s restrictive treatment guidelines.
- The Lyme Disease Education and Support Groups of Maryland and the Harford County Lyme Disease Support Group, Inc submitted written testimony supporting a physician’s right to use clinical judgment and patient’s rights to receive adequate treatment.
- Maryland patients, volunteers and group leaders from across the state have also been active assisting national and state organizations with their ongoing efforts throughout the process.
- Contact person: Lucy Barnes, Director
- AfterTheBite@gmail.com
- Lyme Disease Education and Support Groups of Maryland
- Lucy - July 27, 2009 at 3:25 pm
https://hamiltonshabitat.wordpress.com/2009/07/08/lyme-disease-update-a-gathering-storm/