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Posted 7/28/2015 4:53 PM (GMT -5)
hey all,

I haven't been diagnosed with anything but my neuro symptoms are getting so bad, I'm thinking of going back to my GP. Is there any kind of nonspecific test of cerebro spinal fluid that can indicate generally signs of infection? I don't know if they will look for Lyme specifically, or if they even have that test here in Canada. Just wondering if I have any options from here.

Thanks,
Posted 7/28/2015 5:06 PM (GMT -5)
A spinal tap is not a good test for lyme disease...it often misses it.

I personally wouldn't have a spinal test...unless absolutely necessary...
Posted 7/28/2015 5:24 PM (GMT -5)
Hi TorontoM,

Unless you are dealing with a really new infection, a spinal tap is considered rather useless in determining Lyme Disease (both my neurologist and llmd confirmed me this).
On top of that, it can cause something called a spinal headache, said to be really painful.

Marie
Posted 7/29/2015 1:28 PM (GMT -5)
It is really, really painful. Think of a meningitis headache times 10. I had to have a spinal done a couple of times and I'm one that looses a bit of spinal fluid and has to spend days on my back because if you sit up - your head absolutely explodes in pain. It was so bad I literally had trouble remembering why I got up in the first place.

And, it's really quite difficult to get enough Lyme bacteria in the spinal fluid for the poor quality testing that we have available to come up as a positive, because there has to be a very large number of bacteria in the spinal fluid at the time of the draw - just like in the blood. So it's really not worth the risks.

This is why even the CDC says that Lyme is to be a clinical diagnosis. And I just don't get how all these doctors can pick and choose what parts of the CDC recommendations they can follow!! GRRRR!
"Lyme disease is diagnosed based on symptoms, physical findings (e.g., rash), and the possibility of exposure to infected ticks. Laboratory testing is helpful if used correctly..."

www.cdc.gov/lyme/
Posted 7/29/2015 5:24 PM (GMT -5)
Good question, Toronto_M. One neurologist told me that the lesions/shadows on my brain from MRI are inconclusive for Lyme; they could be MS, or something else. She recommended a spinal tap to find out if the Lyme was indeed in my CNS.

The feedback you all have provided makes me say a resounding "NO" to the ST, which was pretty scary to me.

Not having a LLMD yet, are there any other, less invasive ways we can use to find out if it is indeed in our CNS, as symptoms tell us?
Posted 7/29/2015 5:45 PM (GMT -5)
I would say if symptoms tell us, we need to believe them.

Also, if it's a long-standing untreated infection...it most likely is in the CNS (not always, but often)
Posted 7/29/2015 8:53 PM (GMT -5)
I probably missed this somewhere, but, aside from us knowing ourselves, and our minds, and knowing something is wrong-- that the Lyme is indeed in our cns, how can it be tested for documentation and believability? With other conditions I have, I am going to apply for ssd and want to provide the attys/judge with enough info in regards to the Lyme infestation that it is (hopefully) obvious.
Posted 7/29/2015 9:27 PM (GMT -5)
nclymer - Do you need to prove that it's in the CNS to apply for SSD? Even if it's not int he CNS, lyme disease is debilitating...
Remind me - did you get a positive Igenex test? Does that hold any weight?
Posted 7/29/2015 9:33 PM (GMT -5)
Girlie, I'm not sure if i need to prove it, and need to find out as I want to be as armed as possible before I deteriorate any more. NC would rather provide SSD to drug addicts, alcoholics and the obese (not joking).
I had two of the 3 main markers on the Western Blot. What is the IgenX testing?
Posted 7/30/2015 9:22 AM (GMT -5)
nclymer, have you read the new to Lyme thread at the top? Igenex is the name of the lab that has the most reliable Western Blot tests.
Posted 7/30/2015 9:33 AM (GMT -5)
I googled disability from Lyme and got a bunch of results that may be of help to you:
/goo.gl/9xXRhm
Posted 7/30/2015 9:54 AM (GMT -5)
To clarify: I've started having neurological symptoms the past few weeks, like tinnitus, headaches, dizziness, numbness in my face and neck, and odd sensations in my arms, hands and legs. Whether or not it's Lyme, I think the neurologist might suggest a LP. I should have my Igenex test results back by then, so that should provide some direction either way.

Just curious as to anyone's experience with LP, whether or not it's been known to confirm neuro. Lyme in cases where Lyme is already known or suspected.
Posted 7/30/2015 10:14 AM (GMT -5)
Lumbar Puncture? No, it does not confirm Lyme. There is no reason to do it if you already suspect Lyme.
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