dut Posted July 23, 2010 Report Posted July 23, 2010 Hi - just wondering if someone can clarify something for me... my understanding (I think based on a memo that Diana Pohlman circulated and which was also posted on here, recounting her visit to Dr. Cunningham's lab and seeing a PANDAS child's blood in action under the microscope) was that the CaMK itself causes the neurons to behave chaotically and that it isn't just a marker. Having re-read Diana's memo, I'm not sure she says that. Can anyone tell me, is CaMK just marker or part of the problem? Thanks
kimballot Posted July 23, 2010 Report Posted July 23, 2010 hi - my understanding is that Cam K is a neurochemical. It helps to regulate other neurotransmitters, like dopamine. When the antibodies from a child with PANDAS cross the blood brain barrier and see the basal ganglia cells, they think the basal ganglia neuron cells are strep and attach to the neuron. They do not destroy the neuron, though - instead the antibodies attach to the receptors in the neuron and make the neuron produce lots of Cam Kinase. Antibodies of children without PANDAS or Sydenham's (typical children) chorea do NOT produce these large amounts of Cam Kinase (antibodies from Sydenham's chorea produce even more Cam Kinase than PANDAS antibodies). I hope that makes sense.
peglem Posted July 23, 2010 Report Posted July 23, 2010 Just to clarify, its not the amount of CamK that is being measured by Cunningham, but to what extent your child's serum activates it. My understanding (have to qualify in case I'm wrong) is that CamK is a sort of catalyst for neurotransmission. So, something in the serum is making the CamK overactive...they believe it at least one of the antineuronal antibodies that they test for.
dut Posted July 23, 2010 Author Report Posted July 23, 2010 cool.. thanks.. so the picture I have in my head from Diana's memo is of neurons happily cupping hands until a PANDAS child's blood (or components of) are introduced and the neurons then becoming chaotic.. so if I understand it right, the CaMK doesn't create the chaos, the antibodies do but this chaotic behaviour will then produce elevations in CaMK which messes with the neurotransmitters. So if a child only shows elevations in CaMK but not in anti-neuronal antibodies, can there still be disturbance caused by the CaMK itself? Here's the bit from Diana's memo "She explained that when the neurons are healthy and happy, they cluster together gently and “hold hands” in nice, orderly groups. When a PANDAS child’s blood is placed with these healthy neurons in a container – they begin to move rapidly in a very random fashion – and the “cupped hands” literally assault each other. There is disarray and confusion. This disarray and confusion of movement is then measured by very expensive machines that use some type of radioactive light rays to physically measure the activity. She wanted us to understand the following: the CaM Kinase and anti-neuronal numbers are tangible physical movements. It is a display of the potential disarray occurring in our children’s brain mentally, physically and emotionally. It was dramatic to see the “microcosm” of this illness." I told our ped that CaMK wasn't just a marker for PANDAS but part of the cascade that actually causes symptoms... was I wrong to tell her that? Sorry I'm being dumb here.. we're off to see our ped tomorrow and I'd like to be able to tell her if I got that wrong... thanks
dut Posted July 23, 2010 Author Report Posted July 23, 2010 Peglem - if it's a measure of activation potential does that mean if, like my dd's numbers, you have high CaMK (in her case 165%) but no anti neuronal elevations, something else maybe casuing hte raised ability to activate CaMK? Or is the antibody that raises the child's ability to activate, not one of the anit-neuronals reported on by Dr' C's test? (She did have a rasied anti-lysoganglioside a year earlier, done thru a different lab..) God, I hate this disorder, I thought I had my head wrapped round it, at least a bit, a year or so ago but feel like I'm wandering in the wilds now..... oh well, onwards and upwards
peglem Posted July 23, 2010 Report Posted July 23, 2010 cool.. thanks.. so the picture I have in my head from Diana's memo is of neurons happily cupping hands until a PANDAS child's blood (or components of) are introduced and the neurons then becoming chaotic.. so if I understand it right, the CaMK doesn't create the chaos, the antibodies do but this chaotic behaviour will then produce elevations in CaMK which messes with the neurotransmitters. So if a child only shows elevations in CaMK but not in anti-neuronal antibodies, can there still be disturbance caused by the CaMK itself? Here's the bit from Diana's memo "She explained that when the neurons are healthy and happy, they cluster together gently and “hold hands” in nice, orderly groups. When a PANDAS child’s blood is placed with these healthy neurons in a container – they begin to move rapidly in a very random fashion – and the “cupped hands” literally assault each other. There is disarray and confusion. This disarray and confusion of movement is then measured by very expensive machines that use some type of radioactive light rays to physically measure the activity. She wanted us to understand the following: the CaM Kinase and anti-neuronal numbers are tangible physical movements. It is a display of the potential disarray occurring in our children’s brain mentally, physically and emotionally. It was dramatic to see the “microcosm” of this illness." I told our ped that CaMK wasn't just a marker for PANDAS but part of the cascade that actually causes symptoms... was I wrong to tell her that? Sorry I'm being dumb here.. we're off to see our ped tomorrow and I'd like to be able to tell her if I got that wrong... thanks As usual, this is something that somewhere Buster has done a beautiful job of explaining... But, I think you're right, it is part of the cascade. Normally when a neurotransmitter hits a receptor, its like pushing a button, which activates the cell and the impulse is sent on to the next nerve cell. But the ANA's stick, and the cell is activated like crazy, kinda stuck in the "on" position. But, it is unknown what else, besides those ANAs can cause high CamKII activity. Now let me see if I can find Buster's explanation!
peglem Posted July 23, 2010 Report Posted July 23, 2010 (edited) This isn't the one I was thinking of, but still may help: http://www.latitudes.org/forums/index.php?showtopic=5860&st=0&p=44139&hl=+anti%20+dopamine&fromsearch=1entry44139 I'll look for the other one. Edited July 23, 2010 by peglem
peglem Posted July 23, 2010 Report Posted July 23, 2010 Okay, I give up, can't find the one I was looking for, but I'm so glad you set me on this path! Going back and reading old Buster posts is so cool. I'm finding that I understand them so much better now, than I did back when they were new!
dut Posted July 23, 2010 Author Report Posted July 23, 2010 thanks for looking... I think I get the ANA stuff , I think, just wanted to make sure that what I told the ped about CaMK wasn't a crock ....
Worried_Dad Posted July 23, 2010 Report Posted July 23, 2010 Here's another classic "Buster post" that might help: http://www.latitudes.org/forums/index.php?showtopic=7746&view=findpost&p=63103
T_Mom Posted July 23, 2010 Report Posted July 23, 2010 Here's another classic "Buster post" that might help: http://www.latitudes.org/forums/index.php?showtopic=7746&view=findpost&p=63103 ...forget the online book idea...let's raise money for Dr C by selling "Buster Rocks" bumper stickers...
KaraM Posted July 23, 2010 Report Posted July 23, 2010 ...forget the online book idea...let's raise money for Dr C by selling "Buster Rocks" bumper stickers... Ha! I love it!
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