posted
I had an MRI Monday night- brain and spine with contrast. If it comes back inconclusive, is it fair to ask my NON LLMD neurologist to put me on a heavy antibiotic for 10(?) days and then test me for lyme? And if so, using Elisa or what? My Elisa already came back positive but low titer 1:128. I actually do have a little faith in this guy because he actually said that the low titer doesn't necessarily mean I am (lyme)infection free. But then he said something about testing spinal fluid if my MRI looked suspicious and I have read here that the spinal fluid test isn't accurate either. If my symptoms worsened with antibiotics would any doctor conclude I was indeed infected?
Thanks - I am just desperate to get diagnosed. My appt with LLMD got pushed back to Nov 30 due to scheduling conflict on Doc's part. Thanks for all your help - those of you that have been there have so much knowledge!
Posts: 351 | From La Crosse, WI | Registered: Sep 2005
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My MRI came back with "flairs in the white matter" but my duck neuro said my MRI was normal. Infact better then hers, and it couldn't possibly be Lyme!
I have heard that there is no point in having a spinal tap... I heard it once explained like this:
You go fishing at a stream with a net. You dip the net in the water and you don't get a fish... it doesn't mean there are no fish in the stream!
They will take a sample of spinal fluid they may not get a fish! But it doesn't mean it isn't there. But it will give them a reason to say you don't have LD.
If you had a positive ELISA the next usual step is a Western BLot. GET A COPY OF THE RESULTS and post them here.
Boomerang
Frequent Contributor (1K+ posts)
Member # 7979
posted
Sounds like your neuro is a bit more cooperative than ours was. I tried and tried to get our neuro to at least try antibiotics, but he wouldn't do it. He was more than willing to start "memory enhancing drugs" though.
Go figure.
Best of luck to you!
Posts: 1366 | From Southeast | Registered: Sep 2005
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
Hi there.
A good Western Blot from IGeneX is a LOT less invasive, less expensive, and far more diagnostic for Lyme than a spinal tap.
Not only that, but it's the logical next step after a positive ELISA, even for a non-Lyme literate duck.
Skip the tap and ask for more blood work, but insist on a great lab. Your LLMD will be glad you've already done it! Also, it's good to do it now before starting antibiotics; otherwise you may need to stop the antibiotics to get an accurate test.
Have IGeneX send you a test kit for IgG and IgM and get your doc to sign the authorization. Your lab draws it, you FedEx it in the prepaid shipping m aterial provided on a Monday, and you will have results in about 10 days.
Good luck and let us know.
(Been there, done that, still paying for the spinal tap bills!)
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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WildCondor
Unregistered
posted
My MRI showed white matter lesions on the brain...the neurologists said I had MS. They were wrong, its Lyme. They can go away with aggressive treatment. Get a copy of the report when you get it from your doc. Also, spinal taps are really poor for diagnosing Lyme.
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posted
My LLMD says spinal taps only pick up Lyme perhaps 20% of the time. The Lyme can become cystic in spinal fluid and is not sensitive to Lyme testing in that form. Not to mention that a spinal tap if done incorrectly can have you laid up in bed for a week, like me, because I got an air bubble. Everytime I got out of bed the air bubble would rise, and cause a severe headache. No headache laying flat on my back though. It was not fun. Not worth it with the low results yield and the possible side effects. I would bring your neurologist a copy of Dr. B's protocol. It discusses the low results from spinal taps.
Posts: 38 | From New York | Registered: Jul 2005
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