Some big news folks, I have just pasted in the message Kurt sent to our core group yesterday, cause it says it all... read on....
Yesterday, Kelley's blood results came back. The absolute very last test of very many, all negative so far. She was the one who asked for this final test. The result showed positive for Schistosomiasis antibodies. Schistosomiasis is a water transmitted parasite that isprevalent in Africa and S. America, but virtually unknown in the USA.Please Google "Spinal Schistosomiosis" to understand more about this. Everything fits her symptoms and findings. It also explains some non-typical TM results in her MRI scans. Furthermore, the Schisto parasite could also be (is probably) linked to her liver cyst and maybe even the fibrous tumors found in her reproductive system. I'll repeat a'maybe' on that last one, but there are documented cases.This is pretty bizarre, and some of the doctors at UCD are excited about it. They plan to make a special case study of Kelley. I think that this will help her get more proactive medical attention from them. Happy about that. Kelley and I feel some relief that the cause has been found and that additional proof points away from other diseases such as Lupus or MS. Today was Kelley's discharge date. It has been postponed for almost another week. She will be treated with a drug called Praziquantel and also more steroids, all orally. This treatment should kill the parasites if they still exist in her body. The treatment can cause additional swelling in her spinal canal, and thus the steroids. It is a critical enough treatment to require further monitoring at the facility. Please help make this another quiet week for her. Thanks for everyone's support! Kelley has an awesome attitude, and I know that our support helps to fuel that fire. Kurt (p.s. Kelley had been telling all of us and the doctors from day one that she was concerned that this might be related to what was happening to her. She knew she was exposed to this parasite when she did the Blue Nile expedition 3 yrs ago. Thank goodness she showed the tenacity we are all familiar with, and insisted they do this test! Even though previous doctors she had talked to about this, had dismissed her theory. Sue)
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2 comments:
Kelley: I was absolutely stunned to hear recently from Jimmy about your medical nightmare; and absolutely delighted to hear now, before I could even write to you, that the diagnosis has changed completely. An almost eerily similar situation fell into the life of a friend of mine in Oregon: in her case, completely baffling and undiagnosed, but definitely life-threatening. By complete chance, she happened to consult a doctor in Portland whose personal hobby was rare tropical diseases; he asked if she'd ever swum in a particular river on a remote island in the Caribbean; astonished, she remembered she had; he said she had a parasite that essentially only occurred in that river, and prescribed a treatment that cured her completely. Maybe that means miracles happen; I say it means North American medicine should have a lot more familiarity with tropical diseases. Anyway, my heart goes out to you, along with my fervent wish that this new diagnosis be correct and the solution simple.
xo,
Sean Thackrey
A truly amazing development in that the Doc's did not bother to test for this until week 5-6! I guess nobody is perfect. Well done KK for sticking to your guns and asking more than once.
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