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LP and CSF Results?

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Lyme Disease
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Posted 6/29/2015 4:16 PM (GMT 0)
Has anyone here that has been formally diagnoses with Neuro Lyme had a Lumbar puncture completed? If so, would you be willing to share your CSF analysis?
Posted 6/29/2015 8:03 PM (GMT 0)
I'd be very curious about this question. I'm hearing that even csf analysis for Lyme has false negatives.

Back in December, I had an LP to establish opening pressure in a workup to diagnose possible low csf headache (before having ct Myelogram). The Duke lab retained my Csf. The 2 LLMDs I asked did not seem interested in testing my fluid for Lyme.
Posted 6/29/2015 8:56 PM (GMT 0)
Spinal fluid and fluid from the knee are generally no better for testing for Lyme than the Western Blot because there has to be an extremely large amount of the Lyme bacteria in the fluid at the time of the draw - which doesn't seem to happen often - even if you have Lyme arthritis and it's hitting the knee.

It seems that for those that have severe swelling in the knee due to Lyme, that they have a slightly higher incidence of positive from tests run at the time the knee is swollen, though.

These procedures are much more invasive than a simple blood draw though, so it's not a good thing to have done just to see if you have Lyme. If it's done for another reason and you have Lyme - the fluid can certainly be checked for Lyme antibodies - just don't hold your breath.
Posted 6/30/2015 4:05 PM (GMT 0)
Hey guys,

Still in Limbo about getting to see a LLMD...but while I wait i'm trying to do some digging myself

I've already had a LP done back in Dec '14.

Let's say ones CSF hasnt been specifically testes for Lyme. Is there any other known markers that would be indicative of Neuroborreliosis such as protein levels, WBC, RBS, Glucose ect ect?

I am interested in seeing in what people that have definite Neuroborreliosis and what their typical CSF results are like.

Also, Traveler, I sent you an email.

Post Edited (Chris_1234) : 6/30/2015 10:16:18 AM (GMT-6)

Posted 7/29/2015 3:39 PM (GMT 0)
also curious about this. Anyone?
Posted 8/1/2015 3:39 PM (GMT 0)
Personally, when I started insisting on getting copies of every test that was done on me, and I started comparing them - I was amazed at all the little things that were off. I was high in some things, and low in a lot of things.

At one time I had raised red and white blood counts - but usually they were quite low.

I've always had Dr's tell me that my cholesterol was high - but it's not - not if you take all 3 sets of numbers into consideration anyway!!! Which they never did, even though that's the correct way to figure that!

Most of the doctors that I saw didn't believe that there was anything wrong though, so I never got much in-depth testing done.
Posted 8/1/2015 4:00 PM (GMT 0)
I get my lp results Friday next week. Will respond when I get them.
Posted 8/2/2015 1:06 AM (GMT 0)
I hope everything went well with the procedure!!
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