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Hey All,

Just got back from the Infectious Disease Doctor. If you recall, I tested positive on ELISA ordered by my GP about a week ago. I also have many, many symptoms from the Lyme symptom list.

The ID doc said the only way he will treat me for Lyme is if my Western Blot comes back positive, cause ELISA gives many false positives. So- now I'm worried thinking that the WB may miss me, if it's not very reliable, and I will be stuck in square 1- sick and with no treatment.

The doc suggested that if WB is negative, he is just gonna "monitor" me and see me once a month to check on me-!!!!!!!!!!! I've been sick for 12 months, I don't need monitoring, I need a diagnosis and a treatment plan.

So, anyway- my question is- does anyone have any data on how reliable the Western Blot is (how many "misses", how many false positives, etc).

I'm so frustrated with this...

Eva.
Hi Eva. No Lyme test is completely reliable, and results can vary by lab. Do you know which lab did the test? Testing should be used as an aid in diagnosis, not solely for diagnosis. Any doctor who relies only on test results to diagnose you is not Lyme knowledgeable.

From what I understand, there are false negatives not false positives with Lyme tests.

The most important thing you can do is see a Lyme doctor and be tested for all the co-infections. The sooner you see someone knowledgeable, the better.
Hi Eva. IgeneX in Palo Alto is an exellent lab for tick-borne infection testing. Many Lyme doctors use this lab. I believe you can order a kit from them, but they will give results only to a doctor.

In my opinion, the best thing for you to do is see a Lyme doctor.
Hi Eva.

My blood was sent to Igenex and it went fine. They are a reliable lab and they use quality test media.

I saw an infectious disease doctor who, despite my rash and my symptoms, refused to even consider Lyme.

Please try to call that LLMD that eclipse mentioned and try to get an appointment. An LLMD will understand more than anyone else.

I understand the frustration of being really sick and not being taken seriously.

Hang in there.
:angel:
[COLOR="Purple"][B][I]Maybe not a good comparison..but look at it this way....IF you had cancer would you go see a nose doctor to treat you:confused: Need to go to someone that is a specialist in Lyme...

Please do so soon!!!

Hugs..........
:D [/I][/B][/COLOR]
Remember that most folk who have Lyme don't meet the CDC's criteria of what, 5 positive bands on the Western Blot? I have 4 bands, and a positive Elisa. I also initially tested CDC-positive, suprisingly enough. But 2 seperate tests 6 or so months after initial diagnosis were CDC-negative (don't know how many bands).

Go by positive bands, not that you have 5. Even one can be enough to raise suspicions.
Hi Eva,

There is NO test which can absolutely rule out Lyme. The most frequently performed test, the ELISA, misses over 60% of cases. The more accurate test, the Western Blot, is still not completely reliable and is generally only given if you have a positive ELISA. Which makes no sense at all but there you have it. So in other words a negative test does NOT always mean that you don't have Lyme. For this reason, the CDC states that Lyme is supposed to be a clinical diagnosis with the test used to help confirm.

Some reasons why a test can come back negative in a Lyme infected patient:

1. The sample was taken too soon after infection for your immune system to have mounted a defense.

2. You are producing a detectable level of antibodies, but the lab made an error.

3. You are producing antibodies to a strain of Borrelia burgdorfiri (Lyme) that the lab cannot detect (for the record, there are over 200 strains in the US alone)

4. You are producing antibodies, but they are bound to they Lyme bacteria (called a complexed antibody) without enough free-floating antibodies in the bloodsteam to be detectable.

5. Your immune system is compromised and not responding properly.

6. By taking antibiotics early in the disease, the immune response may have been aborted.

7. The bacterium has changed its makeup and the immune system hasn't noticed it.

8. The bacterium is cloaking itself inside an immune system cell thereby escaping detection.

9. You have a genetic predisposition to produce a negative test, as shown by Drs. Wang and Hilton in their 2001 publication.

In the largest Lyme disease trial ever conducted (for the Lyme disease vaccine trial for Lymerix) which included 10,000 participants, it was found that 36% of the volunteers with proven Lyme disease (culture or DNA positive) never developed a positive Western Blot.





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