posted
The most recent of the 3 neurologists I have seen wants to do a spinal tap on me to look for MS or other neurolgical disorders....and he thinks it can rule out lyme as well. I have read that evidence for lyme Dx from spinal tap is marginal at best. I do not yet know which specific test(s) he has ordered on the CSF. I have not yet had an offical (current) lyme Dx but I had it 4 years ago and am schedueled to see a LLMD (400 miles away) July 6. I am having to deal with the non-lyme-literate medical community in an isolated location and it seems the only way to get their buyoff is to have this done. Which test(s) should I be asking to have performed, or should I bail on the whole thing? Thanks in advance for any constructive advice, LocalMan (Dan)
[ 25. June 2007, 02:27 PM: Message edited by: LocalMan ]
Posts: 212 | From Eastern CA | Registered: Apr 2007
| IP: Logged |
July 6 is not so far away. My LP immobilized me for a few days of horricfic pain and all tests were normal. Unless its ordered by an LLMD who dictates where and how the specimen's are tested, I'd skip it.
The nuero's got a point about the MS concern if the patterns of spots on the MRI are consistent. Mine were not consistent with MS and the bloodwork the nuero did ruled out a lot of ohter things. The nuero wanted me to do the LP but I refused because this guy told me lyme is rare and I don't have it.
That response despite a history of diagnosis was enough for me to stop wasting my time.
I did allow an ID have the LP done. The ID new about lyme and believed I had it based on the history and my success with doxycyclene. I think he did the LP because I hadn't had one and wanted to show my why I hadn't had one! He treated with IV despite the worthless LP and normal test results.
I believe you have to rule out other diagnosis and expect that an LLMD would do this as well. Sure seems some simple doxy would be worthwhile.
Mike
Posts: 87 | From Yorktown VA USA | Registered: Jul 2005
| IP: Logged |
posted
lyme can be found in spinal fluid,i think it is like 5 to 10 percent, you gotta look for ellevated white cells,and high spinal protien.MS,has ogilicolinal bands which show.Go by lyme blood tests.AND clinical symptoms.
Posts: 510 | From NEVERLAND.USA | Registered: Jul 2005
| IP: Logged |
posted
Forget it. If you've already "had" Lyme, then it's Lyme again. Sorry.
Spinal taps for dxing Lyme are less than 20% accurate and sometimes the tap results in severe pain which can last hours, days, or weeks.
I would not personally do a tap unless my very life was in danger.
All of this is MY opinion....and perhaps not worth much!!
I've been on this board nearly 7 yrs and I've heard the horror stories one too many times.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
| IP: Logged |
merrygirl
Frequent Contributor (1K+ posts)
Member # 12041
posted
I just had a spinal tap done 10 days ago. It sucked and turned out to have normal results.
My Neurologist also missed 4 times. I wouldnt do it again in my opinion. I did get IV Rocephin anyway. Good Luck.
Posts: 3905 | From USA | Registered: May 2007
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
Printer-friendly view of this topic