The only good thing about having Ehlers-Danlos Syndrome?
I can lick my own elbow!
Listen for the Zebras....




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Saturday, May 12, 2012

Cytokine Test Results

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For those with EDS, please check out http://prettyill.com/
Dr. Diana wrote the Driscoll theory and contacted me a long time ago regarding Stryder and some of his symptoms. After reading her theory, it fit him to a T. It turns out htat Stryder is a text book case of her Theory. She is going to have a registry soon to help others while joining forces with some well known EDS Dr.s. She asked if we wanted to be early registers, of course we agreed. For those interested in joining her registry, you can request to get on her list at her forum. I have no idea when she will open it up to everyone, but it's soon, so I recommend letting her know your interests.

I got the results of the test and they came back confirming that Stryder has a weakened immune system as well as General immune activation. It confirms everything that we had already "known" and then some. Stryder's immune system is much like a child with cancer as his T-Cells do not fight like they should when they are attacked and therefor make it so he can become sick very easily.

One of the results came back triple and quadruple the baseline, so I looked it up and this is what it said:

MPC1 has been found in the joints of people with rheumatoid arthritis where may serve to recruit macrophages and perpetuate the inflammation in the joints. MPC1 has also been found elevated in the urine of people with lupus as a sign warning of inflammation of the kidney.

I find this intriguing because obviously Stryder has a lot of joint problems, but it is also problematic because it does not mention Ehlers-Danlos Syndrome, although it is definitively a joint problem. We have already done a test for Lupus and it came back negative so this is pointing more toward a Mast Cell Disorder of some kind.

I am waiting to hear what the next step is, but it is reassuring that everything is showing what we have thought. We have done so many tests and so many things came back strange. We have been told he may have cancer several times and a pancreatic disorder and more. Although Stryder may still have some of these from EDS, the results of this test show that it may all be related to his Mast Cells. I was so nervous to get the results and they would have been normal, so even though they show his body is fighting something, it also gives us some answers. I will update as I hear more.


Stryder's Primary Dr. said she has no idea what these mean and I have not got the official results, so the above is only my interpretation.
The results were faxed so the quality is not great-I apologize!



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