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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.
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.
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.
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!!
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.
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.
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.
Ask a friend to take you.
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
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.
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.
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.
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.
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.
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).
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).
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.
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.
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 :(
It will help you a lot, I wish they had it for us older folks :(
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!
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.
Sending healing positive thoughts your way.
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 :)
Thank you for your positive and healing thoughts :)
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.
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.
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?
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?
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.
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.
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.
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!
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!
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
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
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.
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.