Neurological Lyme testing

I understand that Lyme is difficult to test as it is. But, does having primarily Neuro Lyme make testing even more difficult?

You answered it just fine. It seems that my lyme is primarily neurological. Wasnt sure if it was tougher to find if its in the brain.

Maybe a silly inquiry. But, I wasnt even aware of a blood-brain barrier until reading on here. So I assumed a regular blood draw may not get it if its in the brain.

you can do a CSF lyme test, but it is very painful, they will have to extract amniotic fluid from your spine, with a long needle, the operation is painful and a bit dangerous. I'd say easier is to send your blood to a lab that does more accurate lyme testing like IgeneX. If that turns out negative, you can rethink what u can do. As Girlie says, you have to have some antibodies to lyme in your blood, not always the case but it's worth a try.

"my lyme is primarily neurological" - what does it make you feel you have lyme ? u have the symptoms ? there are other diseases that can have some of them, it's very tricky.

if you have a lyme positive test and u have neuro symptoms, then i dont understand why u need to test your brain. you most certainly have it in your brain too ... i did not have any neuro symptoms when this started and as soon as i have taken minocycline, i had a terrible brain herx and then i found out i actually HAD neuro symptoms without knowing, i had some sort of fog on my mind that lifted, it was very subtle back then. Now it is very obvious, because it has returned

Ataxia, peripheral neuropathy, muscle spasms, migraines, brain fog, fatigue, blurred vision, anxiety, and an mri showing brain lesions are my symptoms. Quite sure its lyme because it started after i was bit last year and had the rash. However, i am concerned that i may get a negative test result coming back affecting my treatment options.

I assume they will give me a clinical diagnosis. But i suppose the microbes are all over , not just brain. I finally have my follow up this week and will get my results.

Agent Bex said...
Hey Hoagie, I'm pretty new to the Lyme dx myself, but here's some stuff I've learned that I think is relevant to this topic, especially if you're thinking about getting a spinal tap:

1. Lab tests can support a dx of Lyme, but Lyme is ultimately a clinical dx.
2. Like other testing for Lyme, a negative test does not rule out the diagnosis.
3. If a spinal tap is positive for Lyme, it is a very reliable indicator that Lyme is present.
4. Complications from a spinal tap are possible.

Personally, I had a CDC-positive Western Blot (9 positive bands) 4 years ago. An Infectious Disease specialist said my symptoms were not due to Lyme on account of a negative spinal tap. I'm now undergoing treatment with a LLMD.

Thanks man!! I appreciate that!

They say that the one 100% test for Lyme that is available is the EM rash. I had that, so I am sure I have it. It's just that I don't know if my word is worth more than a test at this point.