How conclusive are blood tests for Lymes?

[mhop111]

How conclusive are the blood tests? Or the awful "spinal tap"? That thing gave me migraines for weeks ugh.

A lot of the ridiculous symptoms that have been disrupting my life for the past year sound like Lymes, but I've been tested for it and it came back as nothing. I was wondering if anyone knows how accurate the tests are, and if it's at all likely that I have it anyway.

All input is appreciated!

[JackieCalifornia]

If you can get copies of all those tests that were run, all the way back to the ER visit, then I'd suggest you do so.  I have a fat binder of all my tests since this Lyme nonsense started, and I drag it with me to my appointments just in case we need to look at some piece of paper the doc doesn't have or can't find.

If you go to an LLMD, you may help the doc more than you know by having copies of those old tests etc. with you.  Instead of starting from square one, you start at square 2 1/2.

Blood counts don't normally include tests for Lyme, and the regular Lyme tests, as noted, aren't very reliable, but data is data.  It can take a while for an ER or a doc's office to dredge up old files, so start soon if you're going to request the tests.  It's up to you, but it's my approach to things, maybe useless, but it makes me feel more in control, if nothing else.  Ha.

[mhop111]

thanks for the response!

I'm not sure what the first tests were, I was all hopped up on morphine in the ER at the time. I couldnt turn my head for two weeks then got a fever so they thought meningitis, but it wasnt. they also told me it wasn't lymes. they never did figure out what it was just threw a lot of pain killers my way. i had a feeling they were wrong and have been fairly sick, with changing symptoms, for a year since.

I've had multiple full blood counts, molecular profiles since then. all normal.

[JackieCalifornia]

Besides the spinal tap, which tests did you have?  Do you have copies of the test results?  

If you didn't see an LLMD (which I'm guessing you didn't, because they usually don't do spinal taps as not being particularly diagnostic of Lyme), then you really should consider it.

I'm also guessing you were not tested for any other diseases that the Lyme ticks often carry and that can be just as bad as Lyme all by themselves.

The tests that nonLLMDs use are not very accurate, esp. if it's been a while since you may have been infected.  Your immune system gives up reacting, assuming it has probably killed the infection, but Lyme doesn't play by those rules.  LLMDs use a different test (which nonLLMDs generally don't use or respect), one that looks for bits of the Lyme bacteria in your blood instead of looking for your immune system's reaction to the invader bacteria, for reasons just stated.

Sorry!  Remember, no one here is medically trained, but happy to share.

Hope you feel better soon.