Lyme disease

[Joepettit]

I was tested for lyme disease over a year ago by my family physician.  Test results came back negative.  I was reading an article in a magazine concerning symptoms of lyme disease and everything listed as symptoms I seem to have.  I am trying to find a specialist in my area who is knowledgable in this area.  Should I have another blood test done to see if things have changed?

[kathloj]

What tests did you have done Joe?
My Elisa came back Neg but they are so highly inaccurate that I pretty much suspected these results. I then ordered an Igenex testing kit through the mail, brought in the requisition forms that came with it and had my GP (took some slight convincing!) order #188 and #189. Runs about $260 total with tax and those tests were the ones highly recommended to me by reliable sources. Though they came back NEG, some of the + bands were highly indicative of Bb antibodies. Both a LLMD and LLND diagnosed me with LD and 2 co-infections based on symptoms and backed up with the lab work. The longer one has Lyme disease the more suppressed the immune system can be, so sometimes the sickest patients have Neg lab tests my LLMD told me! That is why Lyme disease is a Clinical Diagnosis, backed up with lab work if a LLMD deems necessary. Good luck!

[JackieCalifornia]

PS  I just noticed you're in Connecticut ... ground zero for Lyme.  Sigh.

If you search online for something like

           -- connecticut lyme disease --

you will find many patient-oriented groups that will give you avenues to find a Lyme specialist who really knows what's going on.  Lyme is cutting edge medicine, so if you don't get a good feeling from the first Lyme doc, see another.  It's your health we're talking about, after all.

Best to you!  Keep us posted.

[JackieCalifornia]

Yes, I would get re-tested by a new doc.  Standard approach to testing for and diagnosing Lyme, which your family doc almost certainly followed, does not work well.  The tests are out of date, and the many docs don't understand how Lyme works its evil ways.

The test a Lyme specialist would use is likely a PCR test, which looks for evidence of Lyme DNA in your blood, instead of what the 'usual' tests (ELISA and Western blot) do, which is to look for evidence of your immune system reacting against Lyme bacteria.  Problem with the usual tests is that Lyme bacteria have the ability to suppress your immune system, and if the tests do not show your immune system reacting to the presence of Lyme, it may be because the Lyme is not allowing your immune system to produce the antibodies that the test would detect.

So should you have another blood test done?  Yes, but if I were you (and I once had Lyme), I would find an ILADS-member (or at least ILADS-leaning) MD who tests through IGeneX Laboratories.  Their test looks for bacterial DNA from the Lyme, instead of the reaction of your (likely suppressed) immune system.  Direct evidence rather than indirect evidence that may have been suppressed.

It sounds crazy, like Alice Through the Looking-Glass, but that's what Lyme is all about.  If you ask your family physician to run the IGeneX test, he may be willing to do so, but many docs in the that position don't like IGeneX ("too many positive results"), don't see the need for it ("ELISA and Western blot are fine; been around for years"), and won't know what to test for other than Lyme (as far as coinfections are concerned).

I have MDs among my family and lifelong friends, so it's not like I have it in for docs or anything.  The medical profession has messed up hugely with Lyme, though, and it will take a few more years to get it sorted out.  Don't wait.  See an ILADS-member doc.  I would.  I did.  I'm well.  And I'm not a loony bird.

Let us know how we can help and how you do, okay?  Believe me, it's worth it.