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Testing for Lyme in cerebralspinal fluid?
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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.
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I still don't have a memory. My fiancée pointed out something he already told me yesterday and I had no memory of it.

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.
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Unfortunately it is not a very accurate way to get a result. Lots of False Negatives. Sorry. The longer you wait if you have Lyme, the worse you will get.
IgeneX , where most of us test, is covered by insurance and depending on your age they have grants to help pay for testing. You can order your own kit if you can find someone to draw your blood.
Keep us posted.
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Just a quick comment I had two spinal taps each time I tested positive for O bands which I was told o bands are seen in 95 percent patients with MS. I had mostly all neuro problems no balance tremors weakness in my right side I drunk walked for months muscle spams I would fall over if I closed my eyes .. The list goes on and on.. I had a ton test a ton of MRi's and was given two western Blots one finally came back slightly positive.. I finally decided enough was enough I found this wonderful group who helped me. I was told to see infectious dx by my 3 neuro but after researching I found LLMD instead. He sent my testing into igene x I can back positive for Lyme Bart Babs I have been on treatment for almost a year and for the most part my neuro problems are dying down except when I change medicine.. I gotten my life back hang in there I was given many probable dx like MS Wilson disease never Lyme it was kind of swept underneath the rug!!
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I actually did order a collection kit from IGeneX several weeks ago and brought it with me to the appointment. I tried explaining to him that I needed a doctor to sign off for me, and he wouldn't. So the problem is just finding a doctor who will agree, which is difficult because I live in Georgia, which apparently is a pretty Lyme-hostile state to begin with, and all of the LLMDs "near" me are between 4 and 8 hours away. I can't drive long distances because it makes me sick, and I've almost crashed several times trying to force myself to drive more than an hour or so at a time. Even if I could, I don't have a car of my own, and my dad would never let me take his on a 4-8 hour trip because he's concerned about the mileage on it. He wouldn't take me either because he doesn't believe there's anything wrong with me.

The Georgia Lyme Association told me that there's a doctor on a nearby (well about 40 min away) island here who has been willing to test people for Lyme in the past. The problem, though, is that he doesn't accept insurance and charges $250 a visit. I'm pretty broke but could find a way to manage one visit if he'd agree to just see me one time and do the test then, but I don't know if he would.

It's just so freaking complicated. I'm ready to give up.

You sound similar to me, houseofallboys. I do have some other issues, but most of my problems are neurological things that no one can really see just by looking at me with the exception of the hand tremors, but even there, they're fine, so they'd have to be paying attention to my hands to notice. So it's difficult to get people to take me seriously when I don't *look* sick on the outside.
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I remember the 'really ill' part of Lyme, and driving long distances wasn't something I could do either.

Ask a friend to take you.
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Lyme does not normally live in the spinal fluid so that test will be worthless. I wish the south would catch up with the north, I feel bad for you all. Actually I dont even know why I said that because for the most part the north is just as clueless, I am just lucky that I have found a doctor and an herbalist that believes
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I had a lumbar puncture done a few years ago (after 20 lesions showed on my MRI).  It was negative for Lyme and MS.  I have LOTS of neuro symptoms which my latest being tinnitus for the last six months.  ugh...Having a hard time with it today too.
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The Western blot blood test costs between $100-200.  A doc's refusal to run the test is solely because he is sure you don't have it, not because he doesn't want to incur the cost.  The other tests he wants to run cost far more and are more invasive (esp. the LP).  MRIs can cost $1,000-$3,000 apiece.  It always amazes me how many thousands of dollars in tests doctors insist on running rather than a Lyme test.  Did you tell him you were putting your own credit card on the order form to pay for it?  (You don't have to mention you'll submit it to insurance later for reimbursement.)

I guess it shouldn't be a surprise. Sorry if I am repeating myself, but earlier this year, a publication issued by the Yale University Lyme group showed a tick distribution map for the deer tick, which showed completely blank all across the south. It specifically said that positive Lyme tests in these areas are considered false positives.  A couple months later a Texas A&M study found Lyme in 25% of ticks from all over the state!  (Texas was part of the blank area on the Yale map.)

Never mind that Allen Steere did a study on the CDC testing interpretation in '08 that essentially proved that false positives are extremely rare. The only person deemed a false positive was an asymptomatic person.  Every single test subject with symptoms and a positive test did indeed have Lyme.  Of course this info is only helpful if you test positive.  Getting the test authorized is your first hurdle.

I read a post from a guy from the south on another board whose doctor refused to authorize IGeneX testing.  He went to the walk in clinic at a nearby Walmart and that doctor authorized it. Instead of the expensive, far away doc, perhaps you could try to find a nearby inexpensive walk in clinic. You could even call and ask on the phone if the doc is willing to authorize an IGeneX Western Blot so you don't waste the time and money on a doc who won't.
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Oh, yeah, and I tested false negative in my CSF for Lyme.  My neuro concluded I didn't have Lyme because of that.  So did the three docs treating me in the hospital.  I was told that the CSF test is "highly accurate."  Well, according to LLMDs, it is highly accurate when it is positive.

If you are one of the lucky 10-30% who do test positive in the CSF, then the neuro should immediately diagnose you and start treatment. Hopefully, he'll also check the protein level in your CSF.  It is more likely to be elevated in a Lyme patient than a MS patient.
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imaging** center.

I always spell that wrong, grr.
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Oh, maybe the walk-in clinic thing would work. I'll call a few places and ask. Maybe my GP or my previous neuro would do it, too. I just doubt it and don't even know how to go about setting up an appointment. I imagine they'd tell me I was crazy if I called into the office and told them I wanted to schedule an appointment but only if the doctor would test me for Lyme while I was there. Bah.

I don't really want to have the CSF testing done. Sounds scary, and if it's inaccurate, what's the point?

I'm hoping the imagine center calls me soon about my MRI. Maybe something will show up on that. I don't understand how it's possible for something NOT to show up with the immense amount of pain that I always have in my head, but who knows since nothing showed up on my CT scan besides atrophy, which according to my old neuro, is insignificant (eyeroll).
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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.
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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 :(
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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!
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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.
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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 :)
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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.
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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?
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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.
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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.
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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!
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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

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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.
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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/
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Oh, hm, the blog name is bleeped out.

Without the spaces, then, it is:

medical enigma i am . blogspot . com
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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.
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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.
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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.
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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!
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Yeah, I specifically recall you (or somebody on here) saying something about a code, so I looked at the paper and saw the ICD9 Code section and thought that was what you were talking about. I asked her what needed to be put down there, and she told me to put down the IGeneX codes for the tests I wanted. I didn't think that sounded right, but I went with it. Later, though, I looked up what an ICD9 code is, and it's not that! I see what you're talking about now though where it mentions some type of coding under the physician's name. I'm going to have to ask him to fill all of that out for me and then ask him to look over the paperwork to make sure everything's taken care of this time. I printed off a new form on the IGeneX website to start fresh and filled out everything I could on my own.


I need to stop and pick up a billable stamp, too, because I guess that fell somewhere in the process of me lugging the kit around to doctors trying to find somebody to authorize the test for me. One thing after another! >:[

Yeah, I was trying to explain to her that she had to treat the samples in the two vials differently, but she just completely didn't understand. She wanted to refrigerate the CD57 sample, and I was like "NO."

It's such a mess, but the way this clinic works is that there are four clinic locations, and when someone shows up to one, the nurse calls the doctor and has him come over. I called another location earlier and asked if I could go there instead because I wasn't confident that the nurse at the other location knew what she was doing. They said that would be fine, so I hope I'll get someone better qualified this time around.

This is far too much for me to keep track of at once!
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I'm sorry; I just realized I basically repeated everything I said earlier again. My memory isn't working at all lately; I don't really even remember typing those other posts.
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No problem.  I know very well what it is like to have a faulty memory. I was always surprised when my husband pointed something out to me and I had absolutely no memory of it.  You might seriously consider a small notebook where you write down everything you need to remember, and then cross each thing off as it's done. Carry it everywhere.  It really helped me.

Hang in there! I think you are doing the right thing to get tested at IGeneX.
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I still don't have a memory. My fiancée pointed out something he already told me yesterday and I had no memory of it.

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.
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Good grief, that was yet another headache and a half. The doctor got really attitudey with me when I asked him to sign the form because apparently he thought I was just going to them for the drawing services and my neurologist was the one authorizing the test. Doesn't make any sense to me, but whatever. He was upset that I wasn't going to make him my main doctor but I was asking him to be the one responsible for the results of the test. I was just kind of like, "I'm sorry, I thought it was clear that I was coming to you because I needed a physician to authorize the test for me."

He was being a complete jerk, but he did sign it. I had the blood drawn and dropped the samples off at FedEx, so I guess now I wait.

Before that whole incident, I was considering going to him for neurology (his specialty is in neurology even though he runs an urgent care clinic) if my new neurologist turned out to be worthless, but now I just kind of want to obtain a copy of my test results and then never want to have anything to do with him again.

But I'm glad to at last have the actual testing out of the way!

----

As for the memory stuff, I'm stubborn haha. I don't like to keep notes of things I need to do because I feel like, in a weird way, that would be giving into the disease. I don't know. Plus, I'm a really impatient person (I'm pretty sure that's another one of my symptoms though because I used to have the patience of  saint), so I don't really have the patience to slow down and write down everything that my memory should be able to store for me. It's a thought, though, and I really should at least consider using it for the REALLY important things I have to remember. Thanks :)
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By the way, if anybody is interested in reading about my full experience going to get the test done, I pasted my blog entry into my journal on here since MedHelp doesn't like to let me post URLs in the forum. :)
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