-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
Are they telling you it has to come back positive from the spinal tap, or they just want you to at least get it? Did you have any other tests come back positive?
I don't know how dangerous they are exactly, but I have had one. Nothing came back positive from it. Igenex came back positive though.
My doctor (or someone) also froze or saved some extra fluid, so that later on if I need more tests done on my spinal fluid, I won't have to get another tap. Maybe ask about that too.
Sorry, can't help with any of the data you are asking about. I think my LLMD just did one to cover all the bases when he was doing my testing. I thought it was a little extreme though.
But, if he took the time to do it, maybe it is worthwhile? Are you just worried it will come back negative, then they will have more ammo against you? Because if you already have other negative tests, I don't see why having one more would matter.
They are painful afterwards though. You will probably need a family member to help you out for 24-48 hours after.
Posts: 4590 | From Midwest | Registered: Jun 2008
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posted
Not sure of your symptoms....but you should also be wary that the ins. co. wants you to get a spinal tap to test for oligoclonal bands.
If present, 99.9% of neuros would then dx you with MS - which could give your ins. co. an out to cover Lyme treatment. (Those bands are a result of a breakdown in the myelin sheath and can be present in MS and Lyme.)
Posts: 39 | From wdc | Registered: Aug 2007
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Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
even the IDSA guidelines do not talk about spinal tap for Dx. Search on google under spinal tap lyme disease.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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tdtid
Frequent Contributor (1K+ posts)
Member # 10276
posted
I tested Igenex positive but not CDC positive. I guess the fact that I went through five years of tests with every specialist under the sun and then FINALLY by the time I could no longer walk anymore, I had a N.D. send blood to Igenex and refer me to a LLMD.
But after 20 months of orals, my LLMD felt a need to send me to Dr. R in NYC and he is the one telling me I need IV. He said the insurance was going to buck it, so be prepared.
I just thought he meant after the first month of IV. But I can't even get in the IV door.
Thanks for all the information. Still pulling together rebutals and appreciate all the help.
Cathy
-------------------- "To Dream The Impossible Dream" Man of La Mancha Posts: 2638 | From New Hampshire | Registered: Oct 2006
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