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Anyone had an LP for neuro Lyme?

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Lyme Disease
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Posted 5/5/2014 12:33 AM (GMT 0)
I've had Lyme meningitis (clinical diagnosis) for 2 years, however for legal reasons I need to definitively prove that I have it. I've heard almost 100% of people with CNS Lyme test positive for it in the spinal fluid. Is this true?
Posted 5/5/2014 2:27 AM (GMT 0)
No, that's not true at all.
Posted 5/5/2014 7:56 AM (GMT 0)
It is not... sorry.

When Lyme has gone chronic, there is almost no chance of catching it in the spinal fluid. Even my neurologist told me it's not worth the 'risk' doing it.

 

Posted 5/5/2014 3:10 PM (GMT 0)
Don't do it if you don't have too. I would be a lot closer to being really well if I had skipped the LP. My doc said I had to do it because lyme would sometimes not show up in the blood. Mine LP was negative and I have Neuro lyme. The LP sent me into a very bad downward spiral, brought horrible new symptoms and basically made me so unwell that I had to stop working.
Posted 5/5/2014 4:15 PM (GMT 0)
This is interesting because I think a spinal tap may be next for my husband. I guess that we will need to ask probing questions when the team of doctors from Columbia call us next Friday.

I definitely don't want to see him take a turn for the worse. Does he need a LP to justify getting a port?
Posted 5/5/2014 4:45 PM (GMT 0)
The only thing that is helpful is that the LP can rule out tons of other stuff like cancer, MS and autoimmune and other brain infections. So you have to weigh the benefits. The LP itself was actually not bad.

From the LP my lyme came out. I got massive shaking (various body parts would shake for no reason), tremors in my arms and joint pain in my hips. I got body vibrations and personality changes all after my LP. Also went numb from the waist down. Crazy! All my Neuro symptoms came raging out, but that is just me.
Posted 5/5/2014 6:51 PM (GMT 0)
I got a spinal tap and the massive headache afterwards was awful. I tested negative for Lyme but one of the bands turned positive for MS BUT my neuro doc said Lyme can also do that too.

I would not take the risk and pray I never have to go through that again.
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