tu4four Posted October 31, 2013 Report Share Posted October 31, 2013 Took my daughter to the long awaited neuro appt yesterday. He is totally mainstream, as I expexted, but he is going to so an MRI a nerve conduction test and a lumbar puncture. The neuro was kind a d understood that we are going through something really "bad" as he said. But, of course. He didn't think it was pandas. I didn't ask him if he thought so, but after I got a feel for him. I asked him what his thinking was about it. He said he believed in it but thouught it was way over diagnosed. Before we go through all of these tests, especially the lumbar puncture, is there anything else I should ask him to look for? (I mentioned encephilitis, and he said they could add that dimension while we are already doing the lumbar puncture. Link to comment Share on other sites More sharing options...
T_Anna Posted October 31, 2013 Report Share Posted October 31, 2013 I heard that checking CSF for Lyme was extremely accurate, if you've already covered that then forgive me. T.Anna Link to comment Share on other sites More sharing options...
Mommy2MCL Posted October 31, 2013 Report Share Posted October 31, 2013 Glad you got some answers! I am not helpful with knowing what tests but at least you have a starting place. Link to comment Share on other sites More sharing options...
Hopeny Posted October 31, 2013 Report Share Posted October 31, 2013 Oh I thought it was difficult to find that way and most often negative. Curious id be interested in reading more about that. I heard that checking CSF for Lyme was extremely accurate, if you've already covered that then forgive me. T.Anna Link to comment Share on other sites More sharing options...
T_Anna Posted November 1, 2013 Report Share Posted November 1, 2013 Just heard that from the Pediatric Neurologist integrative Doctor we just added. She said that she has had patients who are negative on Igenex but Lyme shows up in CSF, first time I heard that too, but I guess it's possible?! She seems to know her stuff. Anyone else hear this?? T.Anna Link to comment Share on other sites More sharing options...
Hopeny Posted November 4, 2013 Report Share Posted November 4, 2013 Just heard that from the Pediatric Neurologist integrative Doctor we just added. She said that she has had patients who are negative on Igenex but Lyme shows up in CSF, first time I heard that too, but I guess it's possible?! She seems to know her stuff. Anyone else hear this?? T.Anna Everything I have read that I recall said it's not typically found in CSF, http://www.columbia-lyme.org/patients/ld_spinal_fluid.html, though I do know of one case that was diagnosed this way but there was significant CNS involvement, it was a publicized case diagnosed by a neurologist but the patient was in an extreme condition. I'm sure I've over posted this and feel like a broken record but most Lyme Literate doctors don't really go by "positive" or "negative" test, what they look for are Lyme specific bands. Sorry to be so repetitive but it gets complicated for people who have doctors that tell them they don't have Lyme because the test wasn't "positive". (though both my kids tested "positive") so that's why I keep repeating myself because I have read so many stories of people who went misdiagnosed for years for this reason. Quite a number of the bands considered "positive" cross react with other illnesses, while the important Lyme specific bands in some cases aren't even tested. In any case I'm hopeful that the work Advanced Labs is doing will become a more reliable way of diagnosing Lyme. if some cases are uncovered with CSF then all the better! Link to comment Share on other sites More sharing options...
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