RE: Questions for the group about my upcoming LLMD visit (LONG) Lab Testing

[Guest guest]

I put together some links that discuss Lyme testing and these should be

helpful. I also included Dr. B's guidelines and you should read through

these for very specific discussions on the lab testing. Timing is everything

sometimes in the testing process. Some of us never show a positive on the

any of the current tests because if we have not had treatment we may not

have developed antibodies that the tests look for if using the Western Blot.

The Western Blot is part of a two-tiered test where first an ELISA test is

done. The ELISA test is not sensitive enough and many patients might not get

a positive on this test. And many doctors will not do the second step of

testing using the Western Blot method if the ELISA is neg. Adds even more to

the patients that are missed. We also might not show a positive if the

spirochete is in the tissue where it tends to " live " and not in the blood.

If early in the disease Vs. later on we may even show different bands on the

Western Blot.

http://www.lymealliance.org/medical/lab/lab_3.php

Reasons Why A Seronegative Test Result Might Occur

1.. Recent infection before immune response

2.. Antibodies are in immune complexes

3.. Spirochete encapsulated by host tissue (i.e. lymphocytic cell walls)

4.. Spirochete are deep in host tissue

5.. Blebs in body fluid, no whole organisms needed for PCR

6.. No spirochetes in body fluid on day of test

7.. Genetic heterogeneity (300 strains in U.S.)

8.. Antigenic variability

9.. Surface antigens change with temperature

10.. Utilization of host protease instead of microbial protease

11.. Spirochete in dormancy phase

12.. Recent antibiotic treatment

13.. Recent anti-inflammatory treatment

14.. Concomitant infection with babesia may cause immunosuppression

15.. Other causes of immunosuppression

16.. Lab with poor technical capability for Lyme disease

17.. Lab tests not standardized for late stage disease

18.. Lab tests labeled " for investigational use only "

19.. CDC criteria is epidemiological, not a diagnostic criteria

Depending on which test and from which lab your doctor orders may determine

if you should be on an antibiotic. For instance, the LUAT you need to be on

antibiotic for so many days prior to testing. I don't think I have heard of

any doctor taking a patient off of an antibiotic prior to the testing in

very many patients. But, your doctor is the best person to ask and follow

his/her instructions. Since you are waiting to see a Lyme specialist and

can't ask until after you get in, I think it might be good to follow the Rx

the doctor you have seen has given you. You can explain this further to the

Lyme specialist and go from there on the testing. After you read some of the

below information you will be able to clarify better with your doctor.

http://www.lymealliance.org/medical/lab/lab.php

Laboratory Tests for Lyme Disease

Laboratory Tests

An Excerpt from the Lyme Disease Survival Manual

By Tom Grier

http://www.lymealliance.org/research/grier/grier_2.php

http://www.lymealliance.org/research/grier/grier_1.php

Lyme lab information:

www.igenex.com

www.mdlab.com

(There are a few other labs that specialize in vector-borne testing but

these two labs above have information you might find helpful)

Dr. B's guidelines -

http://www.lymediseaseassociation.org/guidlines2002nov.doc

or at ILADS

http://www.ilads.org/burrascano_1102.htm

Hopefully you will have a chance to read through these and get a good idea

of the testing done for Lyme patients. And remember, the testing is not even

close to 100%, in fact misses a lot of patients. That is why a Lyme

diagnosis is based on the clinical diagnosis of a specialist. Sometimes the

testing can help in the diagnosis but should not be relied on solely to

diagnose Lyme borreliosis in the patient. Don't get hung up on worrying

about the tests for Lyme. Let your Lyme specialist guide you.

Warmest regards,

Barb

Barbara Fitzmaurice, RN

Lyme Alliance, Inc.

PO Box 454

Concord, MI 49237

www.lymealliance.org