posted
Hi folks, Just to let you know that the LDA and its affiliate� groups are sending a letter and planning other strategies in response to the NY Times article. We hope other groups and individuals will take whatever actions they feel are right.
NYT letters policy is posted below for your convenience. Ellen
Letters to the Editor
Letters to the editor should only be sent to The Times, and not to other publications. We do not publish open letters or third-party letters.
Letters for publication should be no longer than 150 words, must refer to an article that has appeared within the last seven days, and must include the writer's address and phone numbers. No attachments, please.
We regret we cannot return or acknowledge unpublishedletters. Writers of those letters selected for publication will be notified within a week. Letters may be shortened for space requirements.
Send a letter to the editor by e-mailing [email protected] or faxing (212)556-3622.
You may also mail your letter to:
Letters to the Editor The New York Times 229 West 43rd Street New York, NY 10036
Science Editor The New York Times 229 West 43rd Street New York, New York 10036-3959
Lishs mom
Frequent Contributor (1K+ posts)
Member # 2344
posted
ALSO: CC your senator and representative!
copy of my letter
Re: Unproved Lyme Disease Tests Prompt Warnings Reprints By DAN HURLEY and MARC SANTORA Published: August 23, 2005
Dear Editor,
My daughter had been tested for everything under the sun. Labs such as Labcorp and Quest, often report false positive or false negative tests, as they are not as specific as speciality labs who do thousands of tests on patients who have clinical presentations for specific disorders. According to Quest and LabCorp, our daughter showed auto-immune disorders and did not show Lyme Disease. Her rheumatologist used a specialty research lab in Oklahoma because this lab confirms/rejects auto-immmune disorders. She did NOT have auto-immune disorders. (Research laboratories do not even require CLIA certification). He had to assume active infection.
Other tests done by several speciality laboratories,including IgeneX, for different infective agents, at the request of my physician all came back with positive B.burgerdorferi, and Ehrlichia. Other infections tested for were negative.
Your article states that Quest 'runs a majority of tests', however the context implies "for Lyme Disease". Yes they run a majority of tests, but are not qualified in all spectrums on Lyme Disease, since they do not test for variant strains or the full panel including the outer surface protiens, OSPA or OSPC (band 31,34).
My daughter by Quest had an autoimmune disorder (and not Borellia Burgerdorferi), and by the test in Oklahoma who specialized in autoimmune disorders,she did not have an auto immune disorder! Four other labs did however confirm she did have Borrelia.
Since her diagnosis at age 14, she has gone from wheelchair/bedridden to rock climbing at age 17, thanks to specialty laboratories who know their stuff and doctors willing to treat.
Doctors of all walks (neuro, cardio, ortho etc) very often, will use speciality labs for OTHER conditions, why not tick borne illness?
Your article, trying to shut down inclusive testing lyme laboratories such as IgeneX, may hurt thousands of patients. It is a shame when science and medical advancements get muddled with MD pride,unprofessionalism and politics.
quote:Originally posted by Lishs mom: Doctors of all walks (neuro, cardio, ortho etc) very often, will use speciality labs for OTHER conditions, why not tick borne illness?
Your article, trying to shut down inclusive testing lyme laboratories such as IgeneX, may hurt thousands of patients. It is a shame when science and medical advancements get muddled with MD pride,unprofessionalism and politics.
Excellent letter! I especially liked the above!
------------------ Do not take anything I say as medical advice. I am not a doctor, but I DID stay at a Holiday Inn Express! oops! Lymetutu
posted
Please keep copies of the letters you write. I have a funny feeling that there will be more writing in store for us pretty soon. Ellen
Posts: 819 | From New York, NY | Registered: Oct 2001
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