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.

[freefallin]

I finally heard back about the doctor the Lyme association told me about; he said he would do it, although the woman on the phone was really confused about the IGeneX thing. She was telling me they normally go through Quest, and I did my best to explain that I wanted to be tested through a different lab and had the collection kit and everything ready to go. So hopefully that won't wind up being an issue. I'm hoping that the actual doctor is familiar with testing through other labs since he's dealt with people coming to him for Lyme testing in the past.

She said that the price of a visit for students is $40, so I'm not sure where the Lyme association woman got that he charges $250. If that's the price for non-students, then good grief that's a giant leap. I was really surprised to hear her say $40 for sure, though.

I'm going to try and head over there tomorrow and hopefully get this taken care of once and for all. They said I don't need an appointment and can just stop by whenever I can.

[freefallin]

No worries. You likely never even read it, as several of the posts were deleted by moderators.

Thank you for your positive and healing thoughts :)

[mojogal]

Oh sorry about that and of course I didn't remember. It is very difficult without supportive family and little money.
Sending healing positive thoughts your way.

[freefallin]

The last time I said this in response to your sharing those resources with me, it turned into a mess, but essentially, after looking over those websites, I'm pretty sure I wouldn't be able to get any financial help because of my dad's salary. He isn't and would never be willing to help me pay for the testing and treatment if I'm diagnosed, but the part they care about is that he makes a decent-ish income. I appreciate you sharing, though! Thank you!

[mojogal]

I have good news for you. I didn't realize you are 23 yrs old and my Lyme brain forgot. Go to Lyme tap dot org, they have a grant for those 25 and younger to get Igenex testing done. After that go to lyme light foundation, they have a grant to pay for LLMD visits..
It will help you a lot, I wish they had it for us older folks :(

[freefallin]

I called the office of the doctor that the GA Lyme Association told me about. I'm honestly just tired of putting so much effort into getting a damn inexpensive blood test authorized, and if paying a buttload more than I should have to just to get a signature on the test is what it's going to take, then okay. If I have to, I'll just cancel my appointment with my herbalist next week to make up for the cost. The woman I spoke to did say they offer discounts to students; would it be awful of me to bring my student ID and say I'm a student even though I recently graduated?

She was really friendly and said she would call me back after speaking to the doctor, but she doesn't see why he wouldn't authorize the test for me if he's done it for others in the past. I wasn't expecting her to be that nice; I'm used to people talking to me like I have 6 heads whenever I mention the word "Lyme."

So I'm waiting to hear back, but hopefully I can just head over to this guy's office, have my blood drawn, and call it a day.