Testing for Lyme in cerebralspinal fluid?

[freefallin]

Hi all,

So I finally saw the new neurologist I've been waiting to see forever yesterday. I liked him a lot more than my previous neurologist overall, but he straight up told me it wasn't Lyme because we don't live in New Hampshire. It was pretty hard not to laugh in his face when he told me that only people in NH get it. *eyeroll* But on the other hand, he's going to do an MRI and then said he was going to do a bunch of other testing if that came back negative because he definitely thinks there's something going on, which is a huge step up from my previous neurologist who didn't take me seriously at all and just told me to wait 5 months and then come back for him if I still felt I had a problem.

He said he was "open-minded" enough to humor me and test me for Lyme IF everything else he tested me for came back negative, but he wants to do it his way, which is apparently by testing my cerebralspinal fluid for it since, if I have it, it's one of the more neurological cases. Also, it'd be several months before we ever got to that point because he doesn't have a lot of availability and wants to run a bunch of other tests first.

Anyone know anything about this method of testing for Lyme and if it's accurate?

In the meantime, I'm not really sure whether I want to try and find another doctor who will test me for Lyme or wait until this guy runs some more testing. I'm getting the impression that no doctors who accept insurance are going to do it for me, so I'll have to go to this doctor with a walk-in clinic here who the Georgia Lyme Association said he's been willing to test people for it. He charges $250 a visit, though, so it's not really that viable of an option unless he'd do the test at my first visit. I guess I can call and ask if he'd do that, though.

[freefallin]

Oh, maybe the walk-in clinic thing would work. I'll call a few places and ask. Maybe my GP or my previous neuro would do it, too. I just doubt it and don't even know how to go about setting up an appointment. I imagine they'd tell me I was crazy if I called into the office and told them I wanted to schedule an appointment but only if the doctor would test me for Lyme while I was there. Bah.

I don't really want to have the CSF testing done. Sounds scary, and if it's inaccurate, what's the point?

I'm hoping the imagine center calls me soon about my MRI. Maybe something will show up on that. I don't understand how it's possible for something NOT to show up with the immense amount of pain that I always have in my head, but who knows since nothing showed up on my CT scan besides atrophy, which according to my old neuro, is insignificant (eyeroll).

[freefallin]

imaging** center.

I always spell that wrong, grr.

[Ricobord]

Oh, yeah, and I tested false negative in my CSF for Lyme.  My neuro concluded I didn't have Lyme because of that.  So did the three docs treating me in the hospital.  I was told that the CSF test is "highly accurate."  Well, according to LLMDs, it is highly accurate when it is positive.

If you are one of the lucky 10-30% who do test positive in the CSF, then the neuro should immediately diagnose you and start treatment. Hopefully, he'll also check the protein level in your CSF.  It is more likely to be elevated in a Lyme patient than a MS patient.

[Ricobord]

The Western blot blood test costs between $100-200.  A doc's refusal to run the test is solely because he is sure you don't have it, not because he doesn't want to incur the cost.  The other tests he wants to run cost far more and are more invasive (esp. the LP).  MRIs can cost $1,000-$3,000 apiece.  It always amazes me how many thousands of dollars in tests doctors insist on running rather than a Lyme test.  Did you tell him you were putting your own credit card on the order form to pay for it?  (You don't have to mention you'll submit it to insurance later for reimbursement.)

I guess it shouldn't be a surprise. Sorry if I am repeating myself, but earlier this year, a publication issued by the Yale University Lyme group showed a tick distribution map for the deer tick, which showed completely blank all across the south. It specifically said that positive Lyme tests in these areas are considered false positives.  A couple months later a Texas A&M study found Lyme in 25% of ticks from all over the state!  (Texas was part of the blank area on the Yale map.)

Never mind that Allen Steere did a study on the CDC testing interpretation in '08 that essentially proved that false positives are extremely rare. The only person deemed a false positive was an asymptomatic person.  Every single test subject with symptoms and a positive test did indeed have Lyme.  Of course this info is only helpful if you test positive.  Getting the test authorized is your first hurdle.

I read a post from a guy from the south on another board whose doctor refused to authorize IGeneX testing.  He went to the walk in clinic at a nearby Walmart and that doctor authorized it. Instead of the expensive, far away doc, perhaps you could try to find a nearby inexpensive walk in clinic. You could even call and ask on the phone if the doc is willing to authorize an IGeneX Western Blot so you don't waste the time and money on a doc who won't.

[carrie235]

I had a lumbar puncture done a few years ago (after 20 lesions showed on my MRI).  It was negative for Lyme and MS.  I have LOTS of neuro symptoms which my latest being tinnitus for the last six months.  ugh...Having a hard time with it today too.

[blamom]

Lyme does not normally live in the spinal fluid so that test will be worthless. I wish the south would catch up with the north, I feel bad for you all. Actually I dont even know why I said that because for the most part the north is just as clueless, I am just lucky that I have found a doctor and an herbalist that believes