Testing for Lyme in cerebralspinal fluid?

[freefallin]

Hi all,

So I finally saw the new neurologist I've been waiting to see forever yesterday. I liked him a lot more than my previous neurologist overall, but he straight up told me it wasn't Lyme because we don't live in New Hampshire. It was pretty hard not to laugh in his face when he told me that only people in NH get it. *eyeroll* But on the other hand, he's going to do an MRI and then said he was going to do a bunch of other testing if that came back negative because he definitely thinks there's something going on, which is a huge step up from my previous neurologist who didn't take me seriously at all and just told me to wait 5 months and then come back for him if I still felt I had a problem.

He said he was "open-minded" enough to humor me and test me for Lyme IF everything else he tested me for came back negative, but he wants to do it his way, which is apparently by testing my cerebralspinal fluid for it since, if I have it, it's one of the more neurological cases. Also, it'd be several months before we ever got to that point because he doesn't have a lot of availability and wants to run a bunch of other tests first.

Anyone know anything about this method of testing for Lyme and if it's accurate?

In the meantime, I'm not really sure whether I want to try and find another doctor who will test me for Lyme or wait until this guy runs some more testing. I'm getting the impression that no doctors who accept insurance are going to do it for me, so I'll have to go to this doctor with a walk-in clinic here who the Georgia Lyme Association said he's been willing to test people for it. He charges $250 a visit, though, so it's not really that viable of an option unless he'd do the test at my first visit. I guess I can call and ask if he'd do that, though.

[JackieCalifornia]

I dunno ... Lyme is still supposed to be a clinical diagnosis, based on symptoms, even if the tests are negative ... because the tests are so inaccurate so often.

[gibsongal]

I'll read your blog! send it to me. i waste too much time being negative and cursin the docs.. i wanna sue someone for IDK. cruel incompetence..suffering ... i was fine and happy and outgoing and "healthy"  all my blood test say i am!!!

I had a LP last month when i woke up with a severe migraine and throwing up. so i went to the ER  the first thing they do is put a mask on everyone incase it is meningitis. so then i guess procedure is to do a spinal.
i said ok and explained that i thought i may have lyme and would they test for that too.

turns out that they just run the regular panel and they saved my fluid and i had to have my doc call and order the lyme part.

Guess you can't ask for your own tests! grrrr.

all this going from doc to doc..educating them.

the naturopath drew my blood for the igenx kit. August it cost me $35.00 for the blood draw. he didn't know much..about lyme (last year when i started seeing him. he recommended Vit D and other things)although the MD at that office is an LLMD who i saw in june  and ran tests through Labcorp in july with an ABX challange.

now go figure.

so the spinal was neg for lyme.

i have had five lyme tests now all neg..and i can be pretty sure it is not lyme

[freefallin]

My visit to that clinic was...interesting. Trying to explain the Lyme stuff to the nurse and then doctor felt like trying to have a conversation with a brick wall, but they are going to do the test for me. Hopefully the nurse can figure out how to handle the samples properly because she was, like, completely confused about the whole ordeal.

My head is throbbing beyond belief right now, so I don't feel like explaining everything; I will later. Long story short, though, they're going to draw the samples Monday to make sure everything gets to IGeneX in a timely manner considering tomorrow's a holiday, and CD57 samples must be drawn at the beginning of the week.

I posted a blog detailing the entire visit, but I hesitate to post it because I do curse a lot in my blog. If anyone wants to read it, feel free to ask, though!

[freefallin]

Oh that's great to hear! I tried going off of the herbs for a while before I went to see the neurologist because I was hoping he would do the testing for me then, but since he wouldn't, I went back on them because I can't just stay off of them forever while I ask around trying to find someone who will do the test for me. I mean, I could, but that'd just screw up the whole protocol the herbalist has me on. So complicated; I hope my neurologist is proud of himself making things way more complicated on me than they had to be.

Anyway, I'm going to ask if we can do the 2 Western Blots and the CD57. I don't know if we can since IGeneX only sent two tubes, though. I don't really know how all of that works.

[mojogal]

I was on abx when I took my tests and they still came back positive. I don't think you need to be off the herbs.

[freefallin]

Oh! I forgot to ask the question I headed over to the forum to ask in the first place.

Back when I spoke to the woman with the Georgia Lyme Association, she mentioned that, if a doctor prescribed me antibiotics for any reason, I should quit taking them for a while before getting the testing done because antibiotics can cause the test to come back falsely negative. I'm not on any antibiotics, but I am taking the herbs my herbalist has me one, which I assume have antibiotic properties. Anyone know if the fact that I've been on these herbs for a few months could have an impact on the results I get back?