greetings from england, i recently tested sero positive for lyme via a blood test (borrelia antibody evaluation by ELISA technique). i then had a lumbar puncture, and the spinal fluid was tested for lyme. that test came back negative.
my symptoms are mainly neurological (slurred speech, double vision, micrographia, balance problems, etc) but i have tested clear for every suspected neurological syndrome. our national hospital for neurology has literally run out of things to test me for!
my neurologists tell me that their spinal fluid test (negative) means i do not have lyme. they say the blood test shows i have previously encountered lyme, but not that it is still present. meanwhile, the doctor who sanctioned the (positive) blood test is convinced that lyme is the cause of my suffering.
who, or rather which test result, should i listen to? lyme is not very well understood on these shores, hence this rather desperate posting! many thanks, mark
Posted by robi (Member # 5547) on :
Spinal fluid is often not positive. There are others here from your part of the world ... they will be here to help I am sure.
Strt reading the Newbie LInks...... lots of info you will need.
Wish I felt better ....i could help more, robi
Oh, glad you found us ..... there is help. You will feel better in the future. This is a long slow process.......... fasten your seatbelt but don't lose hope......... you will be ok.
Posted by trails (Member # 1620) on :
Also--it DOES matter where the tests were done. If you had a positive ELISA it should have been followed by a blood test called the western blot.
Do you know if they did this? It is standard procedure.
Posted by lou (Member # 81) on :
I say go with the doc that thinks you have lyme and don't do anymore testing.
All you get from more testing is more confusion. Sometimes people are positive on ELISA, sometimes on western blot, but trying to get a positive on both is asking for trouble. The fact is that it is a clinical diagnosis (symptoms and history) with tests only in a supporting role. You saw what happened with the two tests your already had.
Think you should definitely find the Eurolyme forum for more local help. Their info is in the support groups section of this page, click on that line in upper left side green menu box.
Posted by ocdmark (Member # 8884) on :
thanks so much for your replies - the fog is lifting!
i didn't have the western blot.
the strange thing is that the neurologists doubted i had lyme as it was an "unusual presentation". is there such a thing as a typical presentation?
hmmm. will start digging on those newbie links & eurolyme.
once again, thanks. mark
Posted by flyers999 (Member # 1397) on :
Mark,
Don't feel so bad. lyme is not very well understood on these shores either. You never should have had that lumbar puncture, that was dangerous and unnecessary.
Good luck
Posted by Soleilpie (Member # 8481) on :
quote:Originally posted by flyers999: Mark,
Don't feel so bad. lyme is not very well understood on these shores either. You never should have had that lumbar puncture, that was dangerous and unnecessary.
Good luck
Woah, let's be careful with what we tell others here. A lumbar puncture soley to test for Lyme disease is generally not recommended because of its high rate of false negatives. If Mark's doctor was using it to check for other neurological issues, then it was probably the right thing to do.
Posted by Lymetoo (Member # 743) on :
Hi Mark! Welcome! Continue to do your homework, because MANY drs have no clue about Lyme disease....especially when alot of the symptoms are neurological. Neurologists rarely consider Lyme.
If you have more questions....just "shoot"! Posted by on :
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