testing questions

[annelb]

I usually hang out at the gluten sensitivity/celiac disease forum. I have a couple of questions for you about testing for lyme. I am a nurse and from time to time the doctors in the clinic send off a lyme test. The only test they use is the Western Blot. How accurate is that. What tests should be run? What are the best labs? Is there a good article to take to them? (they probably won't listen :rolleyes: )

Thanks for your help.
Anne

[blimeyitslymie]

I think the LDA (Lyme Disease Association) is a good place to start for overall information:
http://www.lymediseaseassociation.org/

and thought this link was a good one for overall information as well as specific information on testing

http://www.anapsid.org/lyme/

You'll find that the field of Lyme is tremendously polarized ... not only in diagnosis, but in treatment as well. It is comforting to know that there are practictioners out there who are hoping to become more educated about this devastating illness. THANK YOU.

[annelb]

Thank you. I will do some reading.
Anne

[timaca]

Anne~ With regard to testing, the 3 labs that are often used by doctors who diagnose and treat lyme disease are: Igenex in CA; MDL (Medical Diagnostics Lab) in NJ and Stonybrook (State University New York--SUNY) in NY. Some info follows below. Timaca


A good symptom list on lyme is www.canlyme.com/patsymptoms.html.

A good article on lyme is www.canlyme.com/donta.html. Another article on lyme is at www.lyme.org/conferences/98_abstract.html (scroll down and read “Lyme Borreliosis and Related Disorders”—it’s about halfway down the page). Also at www.ilads.org, look on the left side. Click on “Treatment Guidelines.” Click on the article by Dr. Burrascano. Also at www.ilads.org, on the right hand side, click on “National Guideline Clearinghouse Treatment Guidelines.”

An article about chronic fatigue syndrome, fibromyalgia and lyme is www.canlyme.com/fibrocfslyme.html.

Some good labs for lyme testing are Igenex lab www.igenex.com
Medical Diagnostics Lab www.mdlab.com
and SUNY at Stony Brook www.path.sunysb.edu/labs/ticklab/TICKLAB.htm
It is suggested that one orders an IgG and IgM Western Blot test, at the very least. Ask the lab to report ALL bands. Ordering tests from more than one lab is also a good idea.

Some good articles on lyme testing are www.canlyme.com/wb.html and www.igenex.com/labtest.htm and www.igenex.com/lymeopt2.htm. Please note that there is NO definitive test for lyme disease. Lyme disease is a CLINICAL diagnosis….lab data is supportive ONLY. See the recent reseach from John Hopkins University: http://tinyurl.com/pjnkm.

A lyme magazine is Lyme Times and can be found at www.lymetimes.org

Some good lyme web sites are www.canlyme.com
www.columbia-lyme.org
www.lymediseaseassociation.org
www.lymepa.org
www.lymeinfo.net/lymefiles.html
www.ilads.org
www.unh-lyme.org
www.lymenet.org (a lyme disease support group)

To find a doctor that knows about lyme, go to www.lymenet.org. Click on flash discussions. Click on seeking a doctor and post there. Also go to www.lymediseaseassociation.org. Look for “Doctor Referrals” on the left hand side. Post there. They will get back to you in a week or so.

[Sonsie]

Everyone, even the CDC, states that Lyme disease is a clinical diagnosis. A LLMD certainly would not seek to diagnosis looking at test results, in other words. The nature of the spirochete and its behavior demands that no doctor should test patients and go with the test results. It is critical that any doctor wanting to become Lyme literate comprehend this! Failure to do so can harm patients terribly when the doctor relies on the test results to design treatment protocols.

Here are three links that explain how complicated testing is and why it is not a good gauge of whether someone has Lyme disease:

o Reasons for False Negative Lyme Disease Blood Test Results at http://www.anapsid.org/lyme/lymeseroneg.html

o Primer on test accuracy at http://www.wildernetwork.org/accurate_test.html

o Pitfalls of lab testing at http://www.johndrullelymefund.org/Pitfalls%20Lab%20Testing.htm