I am currently seeing a neurologist who basically agrees with me on most everything.
She thinks the other doctors are way off, and agrees that it could be lyme and/or co.
She told me she wants to rule out some other possibilities before we do anything radical.
She is having me get an MRI of my brain, because she thinks it could be MS.
And she also has getting a spinal tap.
I am confused about the spinal tap, could this rule out MS? Or is she looking for the lyme and co in the spinal fluid. She would not say.
I just cant immagine what she would be looking for in the spinal fluid since they already ruled out meningitis.
Any thoughts?
Thank you in advance.
Posted by proudtoserve (Member # 14811) on :
Sorry all I kinda answered my own question I finally found a posting that helped me out.
But one question still remains. How do you know?
Meaning what if you push away from the MS theory and brush it off as being lyme, but in reality you DO have MS and Lyme.
With all the pain associated with lyme and co. How do you ever know if something other than lyme and co is going on?
Since pain is your bodys warning sign that something is wrong. You can not trust that warning signal anymore. NOW WHAT?
Sorry all, Too deep for a Monday morning? Posted by onthemend (Member # 13454) on :
I had two spinal taps, each part of an investigation for MS. My CSF was also tested for Lyme but it wasn't the purpose of the lumbar puncture, nor is it an accurate test for Lyme anyway. There are other conditions in addition to MS which will also be tested for via your LP.
While not excited about having a spinal tap, I did feel it helped my doctor to arrive at a sound differential diagnosis of Lyme. I have never had a CDC positive test for Lyme - I've had as many as 4 positive IgM bands in a single test. LP results that showed no signes of MS or other diseases of the spinal cord/nervous system were one more element supportive of my ultimate diagnosis of Lyme.
The LPs were ordered through neurologists as part of an MS investigation, before I ever saw an LLMD.
Best-
otm
Posted by Michelle M (Member # 7200) on :
Pain is more a lyme thing than an MS thing.
If it will make everyone happy, then do it.
She's looking for oligoclonal bands in your spinal fluid, most likely.
Though in truth, you can have those from lyme as well.
You probably won't have any, which will swing her diagnostic pendulum back toward lyme.
An MRI is a good idea also. Your lesions, if any, would tend to be more frontally located that the lesions seen in MS. Though not necessarily.
Bb is a fastidious bacteria which is not often found in spinal fluid; about 10% of the time, I think. So make sure she's not holding her breath.
Then make sure she puts you in IV Rocephin or some such.
Look for elevated opening pressure and elevated proteins. Those are the most common findings, not other things. Good luck - I know you've had to fight like the dickens to even get this far!!
Michelle
Posted by sixgoofykids (Member # 11141) on :
Will she run and IGeneX Western Blot? That sounds far less radical than a spinal tap!
Posted by proudtoserve (Member # 14811) on :
quoting sixgoofykids: "Will she run and IGeneX Western Blot? That sounds far less radical than a spinal tap! "
I already tested positive on the ELISA and western blot according to Walter Reed medical center.
So thats why I didnt understand why I needed to have a spinal tap.
Posted by sixgoofykids (Member # 11141) on :
In that case, I would go see an LLMD and start treatment. If you have symptoms and a positive test, you have Lyme! I would say your current doctor does not understand Lyme Disease.
Posted by SL10 (Member # 12953) on :
If you go through with the spinal tap, get an agreement ahead of time that your doc is not going to make an automatic diagnosis of MS based on the presence of oligoclonal bands before you and she have had time to discuss the results.
My husband's neurologist was willing to keep an open mind about Lyme, until he found the oligoclonal bands. By the time we got in to see him about the results of the spinal tap, he had already diagnosed my husband with MS.
The ramifications being, that the doc was more or less required to follow his practice protocol for MS treatment which called for steriods - and would not consider prescribing abx - neither IV nor even oral.
And of course - my husband will now have to report an MS diagnosis on all future health and life insurance forms.
If you have positive blood tests and symptoms that include pain, it seems odd that she would keep looking for MS instead of treating for Lyme - as pain seems to be the one distinguishing feature of Lyme that is not usually present in MS.
Posted by SL10 (Member # 12953) on :
Forgot to respond to another piece of your post....what if you do have both?
We don't know if my husband has Lyme AND MS...its entirely possible. However, some docs believe that some abx (particularly the cyclines) have anti=inflammatory properties. There have been successful trials of treating MS with minocycline - it just hasn't reached generally accepted practice yet. So, though we could not convince our neruo to prescribe the abx, we believed the most prudent course was to pursue abx treatment.
My husband had definitely improved - so whether its Lyme and MS, we don't know - we only know that the abx have brought about significant improvement. However, we had to find a Lyme doctor in order to get them prescribed.
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