POISCENTER
General Category => Poll Center => Topic started by: LAPOISSE on June 09, 2013, 07:31:45 AM
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According to B Daniel, the vast majority of POIS persons that have been tested for that are in the bottom of the normal range(low ceruloplasmin). CP is made by the liver and bind with copper.When the copper is non bond, it is considered as Toxic ; Extreme case is Wilson disease.
If you tested Total coper serum and CP you can calculate your free serum copper :
http://www.wilsonsdisease.org/wilson-disease-patients/wilsondisease-calculator.php
According to the test and calculation mine is 3 times what it should be.
I'm curious to know if you guys investigate this already.
Thanks
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According to B Daniel, the vast majority of POIS persons that have been tested for that are in the bottom of the normal range(low ceruloplasmin). CP is made by the liver and bind with copper.When the copper is non bond, it is considered as Toxic ; Extreme case is Wilson disease.
If you tested Total coper serum and CP you can calculate your free serum copper :
http://www.wilsonsdisease.org/wilson-disease-patients/wilsondisease-calculator.php
According to the test and calculation mine is 3 times what it should be.
I'm curious to know if you guys investigate this already.
Thanks
My feel is that at best, we are just looking at another symptom. It's great to see all these "markers", things that stand out as being
different in us. But it seems that wilson's disease patients also have this problem, but we don't have Wilson's Disease. The cause of the problem
for someone with Wilsons Disease may be entirely different from the cause for us, so, since we are NOT medical experts,
the meaning of the marker is useless.
I guess the best we can do is collect all the "marker" information we can find and let the researches look at at to see if anything makes any sense to them.
BTW everybody, we can help out the research process by going here http://poiscenter.com/forums/index.php?topic=1056.msg9545#msg9545 and telling the researchers what POIS is. What has helped you. What makes it worse. This is our opportunity to have a voice.
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Everybody, we can help out the research process by going here
http://tinyurl.com/k9noay9
and telling the researchers what POIS is.
What has helped you.
What makes it worse.
This is our opportunity to have a voice.
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According to B Daniel, the vast majority of POIS persons that have been tested for that are in the bottom of the normal range(low ceruloplasmin). CP is made by the liver and bind with copper.When the copper is non bond, it is considered as Toxic ; Extreme case is Wilson disease.
If you tested Total coper serum and CP you can calculate your free serum copper :
http://www.wilsonsdisease.org/wilson-disease-patients/wilsondisease-calculator.php
According to the test and calculation mine is 3 times what it should be.
I'm curious to know if you guys investigate this already.
Thanks
My feel is that at best, we are just looking at another symptom. It's great to see all these "markers", things that stand out as being
different in us. But it seems that wilson's disease patients also have this problem, but we don't have Wilson's Disease. The cause of the problem
for someone with Wilsons Disease may be entirely different from the cause for us, so, since we are NOT medical experts,
the meaning of the marker is useless.
I guess the best we can do is collect all the "marker" information we can find and let the researches look at at to see if anything makes any sense to them.
BTW everybody, we can help out the research process by going here http://poiscenter.com/forums/index.php?topic=1056.msg9545#msg9545 and telling the researchers what POIS is. What has helped you. What makes it worse. This is our opportunity to have a voice.
Actually we don't have any common marker that could explain our symtoms . No markers, no consideration from medical community. I got low testo, I had 5 endocrino around me asking question, 2nd result came righ, they don't even answer my calls. There is already at least 6 people that are low in CP ; Low CP is problem with copper, problem with copper can be something else that Wilson.Its really not a symtoms..low ceruloplasmin mean that you have copper hanging around in your body an potentially making damage to you liver and brain.
Medical community about mineral, neurotransmitors, vitamin deficiency, etc : forget about it, They know nothing about all that...and what is not know, does'nt exist.For med in here if I don't have an organ faillure with blood test come 10X the range, then I'm perfectly fine and get SSRI prescriped(wich will probably make the problem worse).
So research is great of course, and I hope they will find something but I keep digging myself anyway(and learning stuff meds don't know).
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Just something to add : If we don't have markers, we don't know how POIS work.and taking 24363 diferents suplements it's very like shooting in the dark...Maybe one help, the other goes the opposite way, etc...there is 253673 interactions possibles...
Even if its an incomplete picture, finding markers is a good way to know what way we want to do and avoid mistakes.
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BTW everybody, we can help out the research process by going here http://poiscenter.com/forums/index.php?topic=1056.msg9545#msg9545 and telling the researchers what POIS is. What has helped you. What makes it worse. This is our opportunity to have a voice.
It seems nobody is able to reply to that thread, Daveman. Looks like you'll need to adjust the settings on it. I was about to add links to the compedium site, CertainlyPOIS's summary, and my treatment trial compilations.
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BTW everybody, we can help out the research process by going here http://poiscenter.com/forums/index.php?topic=1056.msg9545#msg9545 and telling the researchers what POIS is. What has helped you. What makes it worse. This is our opportunity to have a voice.
It seems nobody is able to reply to that thread, Daveman. Looks like you'll need to adjust the settings on it. I was about to add links to the compedium site, CertainlyPOIS's summary, and my treatment trial compilations.
OK, it's open now!
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Just something to add : If we don't have markers, we don't know how POIS work.and taking 24363 diferents suplements it's very like shooting in the dark...Maybe one help, the other goes the opposite way, etc...there is 253673 interactions possibles...
Even if its an incomplete picture, finding markers is a good way to know what way we want to do and avoid mistakes.
I wish it could help us.
What can we do about high copper serum?
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You can take zinc with other minerals to rebalance the metals