Recieved partial results from lumbar puncture yesterday which leans toward Lyme. High protein 72, 2 Oligoclonal bands, positive Lyme with blot csf p45,p41,p39 but WB IGM & IGG were negative on initial test. There are a few other results still pending and retest of WB to be done. Neuro sending me to infectious disease doctor but have little faith in doctors in my area. Been complaining for 2 years and just keep getting passed around to different doctors and more tests. Reviewing symptoms of Lyme I feel pretty confident this will be Dx. Can someone send me Florida doctors that specialize, in panhandle but will travel for good care.
Posted by Lymetoo (Member # 743) on :
Pass on the infectious disease dr unless no one has given you antibiotics yet. Then go, but don't buy his BS.
Band 39 is indeed Lyme.. doesn't matter how many other bands.
It's within many other links of info.
Posted by Readytogetbetter (Member # 38763) on :
Thanks so much for the info...no antibiotics yet but I do have to be at Mayo this week for Gastro issues. Neuro thought LP was not needed but I said to do it all! With the lack of faith I have with doctors in my area I was thinking about seeing if anyone at mayo can help? Thoughts...based on all the info I am reading that may be a waste of time there too. Thanks again!!
Posted by Lymetoo (Member # 743) on :
Mayo "does not do Lyme".. expect to be poo-pooed!! They MIGHT believe the LP results. Unless you see a specialist, you will receive the usual maximum treatment of 3-4 wks.
If that is all you get, you will likely go chronic.
GET HELP ASAP!
Posted by nomolyme (Member # 18639) on :
im in fla too need pain meds and a good lld doc have ben struggling with this since 95 and ive had it..every year i get wprse..now i cat think straight and im worried there gona puit me in a nursing home.im 54 and want to get remarrie not be sick the resof my life
Posted by Robin123 (Member # 9197) on :
[QUOTE]Originally posted by Readytogetbetter: [QB] Recieved partial results from lumbar puncture yesterday which leans toward Lyme.
High protein 72, 2 Oligoclonal bands, positive Lyme with blot csf p45,p41,p39 but WB IGM & IGG were negative on initial test.
There are a few other results still pending and retest of WB to be done.
Neuro sending me to infectious disease doctor but have little faith in doctors in my area. Been complaining for 2 years and just keep getting passed around to different doctors and more tests.
Reviewing symptoms of Lyme I feel pretty confident this will be Dx.
Can someone send me Florida doctors that specialize, in panhandle but will travel for good care.
.................................................
Breaking this up for easier reading for others here.
I understand only about 13% get a positive result from doing lumbar puncture testing, so as Lymetoo says, you were lucky.
You have to go to an LLMD - they are trained to recognize, test for and treat Lyme.
See www.ILADS.org for more information, also you can google the Burrascano 2008 guidelines and read up some. There's a lot to learn!
Posted by Readytogetbetter (Member # 38763) on :
Thanks so much for the responses...sorry it has taken me so long to respond but I really appreciated the assistance.
still not started treatment but family encouraged me to go the "normal" medial route so I go back to Mayo next week and will see what happens. I am probably already chronic at this point so what's another week. I do feel lucky and blessed my symptoms are mild compared to so many I have read about.
If I do not get what I expect and request at Mayo will become a regular thinking of all of you tonight...not a good day today! T
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thinking of all of you tonight...not a good day today! T