Anyone have sinus cysts? + more PKD stuff

December 21, 2007

Just got the results of a brain MRI and have more cysts than I knew about

previously...

After my mold exposure, I was accidentally diagnosed with Polycystic Kidney

Disease (PKD) from a CT scan of my abdomen looking at internal hemorrhaging that

nearly killed me. I'm confident the blood issues were mold/mycotoxin related as

I had three events in the two years I lived in that mold pit and I hadn't had

any such issues in the 8 years prior or 3 years since (I'm prone to bleeding

issues since I have an artificial heart valve which requires me to take

bloodthinners). In addition to the cysts in my kidneys, I also have cysts in my

liver, pancreas, spleen and on my spine. I get them under the skin on my scalp,

as well.

PKD is a genetic disease, although we have no known family history of the

disease or of renal issues. I still have about half of my renal function left,

down from three quarters when it was diagnosed (that is a WEALTH of kidney left,

thankfully). The disease does not progress in everyone, but if it does

progress, it leads to End Stage Renal Disease (ESRD) which is treated with

dialysis and/or kidney transplant. Lovely.

Mr. Haney recently posted the link to the CDC article indicating that PKD is

suspected by some to be triggered by mold/mycotoxin exposure. Unfortunately,

the study authors are pretty much retired at this point and don't seem to be

furthering that study. The kidneys they worked with had been removed, and since

mine are still operational, I wanted to know if anyone was removing fluid from

intact kidneys - sounds like that hasn't been done. I did get told someone is

looking into the subject a bit at the Dept. of Aggriculture.

At any rate, if anyone has any special info on the sinus cyst situation, I'd

be interested.

OR if there are any number of *us* with PKD, maybe we could work as a group to

prompt additional studies on the mold connection (I keep dangling it in front of

Dr. Hooper and hoping he'll bite) - I'd be willing to help write grant

applications, although I'll warn folks that my brain is continuing to

deteriorate, it seems. lol.

Merry Christmas,

~Haley

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