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Testing for Lyme in cerebralspinal fluid?
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.
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.
Oh, how frustrating! That is pretty bad that the nurse didn't have the doc sign it!
Be sure to look at the box where they need to fill in some kind of ID# for the doc. That is required so IGeneX can validate the doctor. It's some kind of license number or a FDA or DEA number...something like that. I remember I was having so much trouble focusing when I did it, that I went over the form about ten times, trying to make sure everything was okay.
IGeneX can do multiple tests using the blood in one vial. I ordered the full Lyme panel and full coinfections panel, which is about 10 tests, and they only needed the two vials.
One of them has to be "spun," which requires a special machine. If she didn't do that, the sample won't be usable by IGeneX. (Any lab technician would recognize the vial and know right away it needs to be spun. It is the one with the glue-y looking stuff in the bottom of the vial.)
I hope the rest goes smoothly!
Be sure to look at the box where they need to fill in some kind of ID# for the doc. That is required so IGeneX can validate the doctor. It's some kind of license number or a FDA or DEA number...something like that. I remember I was having so much trouble focusing when I did it, that I went over the form about ten times, trying to make sure everything was okay.
IGeneX can do multiple tests using the blood in one vial. I ordered the full Lyme panel and full coinfections panel, which is about 10 tests, and they only needed the two vials.
One of them has to be "spun," which requires a special machine. If she didn't do that, the sample won't be usable by IGeneX. (Any lab technician would recognize the vial and know right away it needs to be spun. It is the one with the glue-y looking stuff in the bottom of the vial.)
I hope the rest goes smoothly!
Oh what the hell. I just looked at the form, and the doctor's signature ISN'T EVEN ON THERE.
She told me it was all filled out and ready to be shipped with the samples. Dammit. My fault for not noticing that sooner, I guess, but I was too overwhelmed with everything else going on at the time.
This is so not going to turn out well. These people have zero idea what they're doing. I'm so frustrated.
I guess we're going to have to get the doctor out there, then, and they better not charge me for another visit because it's not my fault they didn't have the sense to have the authorizing physician sign the damn paper.
She told me it was all filled out and ready to be shipped with the samples. Dammit. My fault for not noticing that sooner, I guess, but I was too overwhelmed with everything else going on at the time.
This is so not going to turn out well. These people have zero idea what they're doing. I'm so frustrated.
I guess we're going to have to get the doctor out there, then, and they better not charge me for another visit because it's not my fault they didn't have the sense to have the authorizing physician sign the damn paper.
And part two. Hopefully it doesn't post this above the first post. I've noticed it does that sometimes when I post twice in a row.
Everything I said to her while I was there seemed to go in one ear and out the other. Felt like I was talking to a wall. I tried contacting IGeneX to ask them what exactly I needed to tell her to do in the simplest terms possible, but I haven't received a response. I also asked them if it would be okay to use the sample kit I have on hand since I've had it for quite some time now, and it's been lugged around a bit to different doctors. I don't know if it's possible that it could have gotten contaminated with something along the way that would compromise the test results.
And on top of that, I see there's a new November 2012 Patient Test Request form on the IGeneX site, so I don't know if they'll even accept the older version that she filled out for me Wednesday. I don't think I'll be able to get the doctor to sign off on it if I print the new version because he's not usually in the office. It's a weird setup. There are four clinic locations, and when someone shows up to one, the nurse there calls the doctor and tells him to drive over there. Since I'm just going back to get the blood drawn, she's not going to call him over this time; if she did, I'd probably have to pay the price of another visit.
SUCH A MESS.
Everything I said to her while I was there seemed to go in one ear and out the other. Felt like I was talking to a wall. I tried contacting IGeneX to ask them what exactly I needed to tell her to do in the simplest terms possible, but I haven't received a response. I also asked them if it would be okay to use the sample kit I have on hand since I've had it for quite some time now, and it's been lugged around a bit to different doctors. I don't know if it's possible that it could have gotten contaminated with something along the way that would compromise the test results.
And on top of that, I see there's a new November 2012 Patient Test Request form on the IGeneX site, so I don't know if they'll even accept the older version that she filled out for me Wednesday. I don't think I'll be able to get the doctor to sign off on it if I print the new version because he's not usually in the office. It's a weird setup. There are four clinic locations, and when someone shows up to one, the nurse there calls the doctor and tells him to drive over there. Since I'm just going back to get the blood drawn, she's not going to call him over this time; if she did, I'd probably have to pay the price of another visit.
SUCH A MESS.
The forum won't post my latest post. Argh. Maybe it'll work if I break it into two parts.
I'm getting really nervous that this nurse is going to royally eff up everything, and I'm going to wind up wasting my money on these tests.
For one, I'm now reading that there are different handling instructions for the Western Blot and the CD57, but she was under the impression that she was supposed to do the same exact thing with the samples for each. She had no clue she was even supposed to do anything special other than draw the blood until I asked her if she read the collection instructions, and then after that, she still didn't seem to hear me out when I tried to tell her that the WB and CD57 were two very different tests.
For two, when I asked her if anything needed to be written down for the ICD9 codes section, she told me to write down the codes for the tests I was requesting, but now I'm reading that that's not what an ICD9 code is.
I don't know what to do. I'm also nervous because after she decided we should wait until Monday to draw the samples, she put the needle she was going to stick my arm with in the IGeneX box for me to take home with me. I don't want her to use that same needle; that doesn't sound sanitary at all, but I don't know if she'll get mad or even listen to me if I ask her to use a new one.
I'm getting really nervous that this nurse is going to royally eff up everything, and I'm going to wind up wasting my money on these tests.
For one, I'm now reading that there are different handling instructions for the Western Blot and the CD57, but she was under the impression that she was supposed to do the same exact thing with the samples for each. She had no clue she was even supposed to do anything special other than draw the blood until I asked her if she read the collection instructions, and then after that, she still didn't seem to hear me out when I tried to tell her that the WB and CD57 were two very different tests.
For two, when I asked her if anything needed to be written down for the ICD9 codes section, she told me to write down the codes for the tests I was requesting, but now I'm reading that that's not what an ICD9 code is.
I don't know what to do. I'm also nervous because after she decided we should wait until Monday to draw the samples, she put the needle she was going to stick my arm with in the IGeneX box for me to take home with me. I don't want her to use that same needle; that doesn't sound sanitary at all, but I don't know if she'll get mad or even listen to me if I ask her to use a new one.
Oh, hm, the blog name is bleeped out.
Without the spaces, then, it is:
medical enigma i am . blogspot . com
Without the spaces, then, it is:
medical enigma i am . blogspot . com
I ranted in my blog about how stupid it is that I can't get the dang tests I want without jumping through a gazillion hoops. Especially if I'm willing to pay for them out of pocket without involving insurance, I don't see why I shouldn't be allowed to get tested for something I think I may have because a doctor says no. It's my freaking body; I should have a right to check it for anything I want.
I'm sorry you're having so much trouble getting a diagnosis. I'm not convinced I have Lyme; I just see it as a possibility for me, but I hate that, even if I get a negative test, I can't be positive I don't have it due to the complexity of the disease. I have no clue what I'm going to do if I test negative for Lyme and then all of the tests my neurologist is planning on doing come back completely normal. It just doesn't make any sense to me. How can I be so uncomfortable and so in pain, and yet all of these tests say I'm normal? Like yesterday, I woke up, and I felt SO feverish. My body felt really hot to the touch, yet I myself was freezing and felt extremely just run down and lethargic, not to mention my head was throbbing worse than it usually is. I just laid in bed for two hours clutching my blanket before I even got up because I was too cold to move. By the time I got to the clinic, I was feeling a little better but still felt as though I was running a fever. Yet when the nurse took my temperature, it was normal. Well, it was 99.something (I couldn't hear the exact number), so perhaps slightly elevated, but not significantly. Just doesn't compute.
Anyway, here's the blog. As I said, lots of cursing. I mostly just use it for myself to vent since I don't really have too many readers, so anyone who doesn't want to read that shouldn't open the link!
http://****.blogspot.com/
I'm sorry you're having so much trouble getting a diagnosis. I'm not convinced I have Lyme; I just see it as a possibility for me, but I hate that, even if I get a negative test, I can't be positive I don't have it due to the complexity of the disease. I have no clue what I'm going to do if I test negative for Lyme and then all of the tests my neurologist is planning on doing come back completely normal. It just doesn't make any sense to me. How can I be so uncomfortable and so in pain, and yet all of these tests say I'm normal? Like yesterday, I woke up, and I felt SO feverish. My body felt really hot to the touch, yet I myself was freezing and felt extremely just run down and lethargic, not to mention my head was throbbing worse than it usually is. I just laid in bed for two hours clutching my blanket before I even got up because I was too cold to move. By the time I got to the clinic, I was feeling a little better but still felt as though I was running a fever. Yet when the nurse took my temperature, it was normal. Well, it was 99.something (I couldn't hear the exact number), so perhaps slightly elevated, but not significantly. Just doesn't compute.
Anyway, here's the blog. As I said, lots of cursing. I mostly just use it for myself to vent since I don't really have too many readers, so anyone who doesn't want to read that shouldn't open the link!
http://****.blogspot.com/
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Same for my daughter and son in law when they said they told me they are going to Europe and buying a house, I have no memory of it.
Both daughters are use to it now when I say, I don't remember.