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Transplants Bone marrow and stem cell transplantation

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  #1  
Old Wed Feb 20, 2013, 08:28 PM
Cam Cam is offline
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Location: Jacksonville, Florida
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Has anyone had the BK virus?

At day 75 I found out that I have now gotten the BK virus. So my doctors are now cutting down my immunosuppression medications to counter act it. Has anyone else dealt with this? Does anything help?

Thanks for any insight.
Cam
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Cam, BMT 12/6/12 for MDS, diagnosed August 2012 beat it in December 2012
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Old Thu Feb 21, 2013, 12:02 PM
Marlene Marlene is offline
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Hi Cam,

John had the BK. His bladder was bleeding at the same time. His experience will be different since he did not have a transplant but the cytoxan wiped out his marrow and he had no white cells for 84 days. During this time at the hospital, they tried some antibiotics but it had no effect. His bladder was being flushed with saline 7/24 for about two months at the same time. We were told that once his white count got high enough, it would clear up. He ended up being released even though his bladder was still bleeding. So we were in a "wait and see" mode since there was not much anyone could do.

In the meantime, fresh cranberries came into season and I was making tarts, chutney and preserves. So he was eating them quite a bit over a 3 week period. To our surprise, his bladder cleared up. White count remained the same.

So this was our experience with BK and bleeding. I don't know if it's a good strategy for you to try also but I don't see how it could hurt. Cranberries, as well as blueberries have a compound that prevents bacteria from adhering to the bladder wall. There is also a product that you can get that will do the same. It's called D-mannose. It's the natural sugar in the berries responsible for their action. I get it in the powdered form and add it to water. Very simple to take.

I haven't kept up with new pharmaceutical for viruses so there may be some new meds out there. Back in 2002 when John was treated, there were none.

Hope this helps.
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Marlene, wife to John DX w/SAA April 2002, Stable partial remission; Treated with High Dose Cytoxan, Johns Hopkins, June 2002. Final phlebotomy 11/2016. As of July 2021 HGB 12.0, WBC 4.70/ANC 3.85, Plts 110K.
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Old Thu Feb 21, 2013, 01:00 PM
Cam Cam is offline
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Thanks foor the advice. I went and bought some cranberrie juice today. I am hoping it does not take three weeks to clear up. My white blood cells and all are in the normal range. They have started backing down my imunosupression meds. They say that is what it takes to kick it. And yes I have the bleeding also.. Not fun...

Cam
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Cam, BMT 12/6/12 for MDS, diagnosed August 2012 beat it in December 2012
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Old Thu Feb 21, 2013, 01:25 PM
Marlene Marlene is offline
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Look into the D- Mannose. I think it would be quicker than the juice. Be sure to drink adequate water. You can also get cranberry capsules.

Good luck.
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Marlene, wife to John DX w/SAA April 2002, Stable partial remission; Treated with High Dose Cytoxan, Johns Hopkins, June 2002. Final phlebotomy 11/2016. As of July 2021 HGB 12.0, WBC 4.70/ANC 3.85, Plts 110K.
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Old Thu Feb 21, 2013, 08:26 PM
Cam Cam is offline
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Thank you. I will definitely go get some of this.. Anything is better than what I have now..
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