Video of Coach Pat Summitt has an interesting comment by her son concerning her diagnosis of early onset dementia: "With a spinal tap, it's about as close as you can get to a diagnosis."
Any suggestions about what he meant? I've never heard of a spinal tap helping to diagnose Alzheimer's or dementia.
Do you think the doctors at Mayo told them that?
[ 08-26-2011, 02:54 PM: Message edited by: cbb ]
Posted by LSG Scott (Member # 21624) on :
she really needs to get to a LLDM and a western blot
mayo are Lyme deniers
Posted by seibertneurolyme (Member # 6416) on :
I think there is a test looking for proteins related to amyloid plaques. I did think it was a bloodtest, but it might be done on the CSF. Regardless, if that is what they are testing I have read that the presence of the plaques does not correlate with at least the severity of the alzheimers -- it may not even correlate with the presence of dementia -- not 100% sure.
Bea Seibert
Posted by cbb (Member # 788) on :
Bea, you may have figured it out for me.
In reading the Summary of a Lyme conference in New Haven, CT (May 8 2010), under Dr Judith Miklossy (Switzerland) it said: "...Alzheimer's disease characterized by the deposition of beta amyloid, and she demonstrated the spirochete infected brain cells can secrete beta amyloid proteins."
Putting that together with your response, it appears that the drs assumed that any beta amyloid proteins in the spinal fluid were from Alzheimer's and they aren't aware of the fact Dr Miklossy has shown brain cells infected with spirochetes can also produce beta amyloid proteins.
Thanks.
Posted by bcb1200 (Member # 25745) on :
I believe she may have dementia, but think Lyme is at the root of it.
Posted by seibertneurolyme (Member # 6416) on :
I know that for hubby his brain spect scan was one of the most useful tests as far as actually showing the brain inflammation and I do believe that the patterns that Columbia has on file should be able to distinguish if there is an inflammatory/vasculitis type problem.
If the damage is too far advanced then the diagnosis might still possibly be alzheimers, but I don't think a person could continue coaching at a professional level if it had progressed to that extent.
And I would be very surprised if the coach has had a brain spect scan. That is not a test that is done as part of a typical alzheimer's workup.
Bea Seibert
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by cbb:
Putting that together with your response, it appears that the drs assumed that any beta amyloid proteins in the spinal fluid were from Alzheimer's and they aren't aware of the fact Dr Miklossy has shown brain cells infected with spirochetes can also produce beta amyloid proteins.
Thanks.
- Wow!!
Posted by sutherngrl (Member # 16270) on :
quote: -------------------------------------------------------------------------------- Originally posted by cbb:
Putting that together with your response, it appears that the drs assumed that any beta amyloid proteins in the spinal fluid were from Alzheimer's and they aren't aware of the fact Dr Miklossy has shown brain cells infected with spirochetes can also produce beta amyloid proteins.
Since I know nothing about the results of her spinal tap, I probably shouldn't be assuming anything, but it really would make sense to me if that were the case.
I hope that she receives info that will enable her to get an opinion from a LLMD. With dementia, especially in a young person, Lyme should be given serious consideration.
Posted by Twisted Jon (Member # 31236) on :
My neurologist has suggested doing a lumbar puncture/spinal tap to discover if there is Lyme buggers in it as to resolve once and for all if that is the root of my issues...as we have exhausted nearly every blood test around that is the only option left...but I fear that it will come back normal...where will that leave me?
Posted by LSG Scott (Member # 21624) on :
Jon you heed a pcr dna blood test and some good prayer so it hits
Posted by cbb (Member # 788) on :
Jon, I've heard that a lumbar puncture is not that reliable in finding the Lyme bacteria. There's a chance it could be positive, but from what I've heard, it's very likely that it won't show anything.
Under "Diagnostic Hints", a LLMD says "Spinal taps are not routinely recommended...." Will send a Private Message with the link to his Guidelines.
Have you been tested by IGeneX Lab in Calif? They specialize in Tick-Borne Diseases (TBDs) and, in my opinion, it's much more likely that their tests would find something. They also test for co-infections. My grandson's Lyme Pediatrician said that Bartonella frequently causes neurological problems.
As you probably know, Lyme is a clinical diagnosis. Tests can be supportive of the diagnosis, but test results should never be used to rule-out Lyme.
[ 08-26-2011, 03:16 PM: Message edited by: cbb ]
Posted by pini (Member # 1405) on :
I was positive for Lyme in spinal fluid and the doctors would not treat me because the titers were not high enough and my blood test was negative.
Do not get a spinal tap!!!
Posted by twicebitten (Member # 5412) on :
I was tested X2 for lyme using spinal tap. Both neg.; however, my blood tests are +. From what I've read lyme is hard to find in CSF.
Posted by lymeinhell (Member # 4622) on :
Relying on a spinal tap to 'determine if one has lyme' is like saying there are no fish in the ocean just because you didn't catch any fish when you went fishing yesterday. Or it's like bobbing for apples. You know they'r there in the barrel, but you may or may not catch one.
Good grief, I think they even used something to similar to that quote on a 'House' episode.
Spinal taps do not rule out Lyme. Antibodies to lyme are mostly found in Lyme meningitis - and are detected in the spinal fluid in less than 13% of patients with late lyme.
Posted by Twisted Jon (Member # 31236) on :
I believe he wants to do the spinal tap not so much to rule it out but to get an idea of what may be causing some of my more severe neuro symptoms i.e. trepidation in my walk, shaking all over and cognitive issues. Also I had spinal meningitis as a child and he suspects there may have been issues not found at the time.
Posted by Twisted Jon (Member # 31236) on :
Getting it done today actually. The neurologist is doing it to rule out many things, not just Lyme. He is concerned that every single other test has come back negative for anything. Heavy metals and everything. Here's hoping...