Spinal Tap..the ultimate infection test(?),....and never done..(?)

I think this is conversation worthy. And...I dont recall it being brought up here, I didnt search either though. Certainly not in recent times.

Just think of the thousands of people that this could provide answers to (?) (beyond "lyme life")

Yet its not a diagnostic tool thats ever mentioned. Ive read its painful...and costly. Is there any new info of this procedure?

For people living in pain....whats a little more pain if it can provide answers?

Please add your thoughts and info.

Remember blood tests only show (if lucky) whats in blood. Oxygen kills Lyme bacteria, so it hides. Parts of your body have minimal to no blood flow. Its like the deep ocean.........we dont now what all lurks there..

Post Edited (astroman) : 8/22/2022 4:02:03 PM (GMT-7)

I've had several, one or two for Lyme. I know one for Lyme at least showed elivated Bb antibodies. But this was done at the NIH, so any guess as to what they decided? LOL

One tap took over an hour (not at the NIH). They had me sideways on a gurney. After 45 minutes, they moved the gurney vertically so gravity would help them get my CSF.It didn't.

It was unpleasant.

“Lyme specialists don't generally look to spinal fluid to diagnose or to rule out Lyme. Here is a paragraph from the 2008 ILADS guidelines, posted at ILADS [dot] org (emphasis added):\r"Spinal taps are not routinely recommended, as a negative tap does not rule out Lyme.”

So if it’s not definitive - no point going through that procedure

I would reserve a lumbar puncture as a last resort test. I had one and although my spinal fluid was subjected to a PCR test for the Lyme bacteria nothing came up. The literature isn’t joking when it refers to the only relief for the post lumbar puncture headaches is to lie flat. I had to do this to avoid the excruciating headache for 48 hours.

If no other answers come up after testing with igenex, dna connexions, galaxy, fry or armin then it is an option.

Duncan, You are a warrior. No more for me.

I haven’t had one done. I’m guessing they’re not usually done unless the patient has encephalitis or meningitis. I thought I had read before that it’s not a good test for Lyme. It still misses Lyme.

There are no good tests for Lyme, including a lumbar puncture. All one can do is work with what evidence you're able to assemble. It shouldn't be like a trial, but it has been made that way

It used to be that Bb antibodies in CSF was pretty good evidence for neuro Lyme. They worked it like the serological 2T. Test equivocal or positive on the ELISA, you get the WB. If you are positive on both, you've neuro Lyme.

I was borderline positive on the ELISA, but they refused to do the WB, even though the existing protocol called for it. They put that needle in my spine, and I dealt with the headache, and then they refused the WB.

To this day I am pissed.

Now with the new AI protocol, I would be more reluctant to do it. I struggle with the math, but it seems more difficult to demonstrate you've Lyme brain through that method.

Post Edited (duncan) : 8/23/2022 4:57:58 AM (GMT-7)

duncan said...

Now with the new AI protocol, I would be more reluctant to do it.

I’ve never heard that term before. What does AI protocol mean?

Antibody index,.......?....more to google

————
Summary:

So a spinal tap still sucks (so did the band lol).

Girlie said...
I wouldn’t have a spinal tap unless it was necessary.

I know three people who had them.
Two of them said never again.
Can’t remember the details - one person said it hurt a lot

Also, I believe my LLMD said that there's an above-average risk of infection, which can be fairly dangerous.

Post Edited (BlueRidgeDave) : 8/23/2022 12:42:31 PM (GMT-7)