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» LymeNet Flash » Questions and Discussion » Medical Questions » Letters in reply to NYT Unproved LymeTests article

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Author Topic: Letters in reply to NYT Unproved LymeTests article
Ann-OH
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I would love to read the responses sent to the New York Times in response to Unproved Lyme Disease Tests Prompt Warnings."

Thanks to Jill for sending all the e-mail addresses. I sent my copy to myself and blind-copied all the NYT addresses. Let them wonder who else got it.

My letter:
[quote]
Attacking Lyme disease testing labs is really ridiculous. The authors of "Unproved Lyme Disease Tests Prompt Warnings" should have read more on the topic.

A study funded by and published by the FDA in 1999, "Lyme Disease Test Kits: Potential for Misdiagnosis" By S. Lori Brown et.al (and found at http://www.fda.gov/medbull/summer99/Lyme.html) explains why Lyme disease testing is so unreliable.
[quote]
"Several factors contribute to the limitations of using ELISA, IFA, or Western blot tests for supporting a diagnosis of Lyme disease. The stage of disease in which the specimen was taken is critical. Many patients with active or recent infections do not have detectable anti-Bb in a single specimen. This happens because such antibodies often develop after manifestations of early infection or because detectable anti-Bb may diminish or never develop in patients treated with antibiotics.......
In summary, serologic testing is not useful early in the course of Lyme disease, because of the low sensitivity of tests in early disease. Serologic testing may be more useful in later disease at which time sensitivity and specificity of the test is improved." [unquote]

As you see, it is widely known that antibiotics can throw off the results of such tests for antibodies, and the patient used as an example was taking antibiotics. Another factor for poor testing is that Borrelia burgdorferi, the disease organism, avoids the blood because it does not like oxygenated areas, or warmth.

We need more doctor education to be able to diagnose Lyme disease and the other co-ifections (not mentioned) such as babesiosis, Ehrlichiosis, and others that can be carried by one tick bite as a clinical diagnosis, sadly the most reliable method we now have. We don't need more "over diagnosis" blather.
[quote]


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Lishs mom
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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.

[This message has been edited by Lishs mom (edited 25 August 2005).]


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Ann-OH
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Great letter, Lish's mom! Using your daughter's tests as an example was brilliant!

This line says it all:
[quote]
It is a shame when science and medical advancements get muddled with MD pride,unprofessionalism and politics.[end quote]


Ann - OH


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JillF
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Just want to make sure everyone has the email addresses for the NY Times:

[email protected],
[email protected],
[email protected],
[email protected],
[email protected],
[email protected],
[email protected],
[email protected],
[email protected],
[email protected]


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Lyddie
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Just from my experience with advocacy for JDRF, the papers won't read or publish long letter unless they are form a professional MD or expert in the field.

They will read or publish relatively shorter letters from a personal perspective.

Long letters with a lot of scientific detail from uncredentialed people is just a bunch of white noise to them.


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BOEJR
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Is it possible for someone to post a link to the article?

thanks,

Julia


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Ann-OH
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Here is where the whole article is posted on Lymenet. You can go to the New York Times, but I think you have to sign on and/or subscribe.
http://flash.lymenet.org/ubb/Forum1/HTML/037039.html

Ann - OH


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