BK Positive Result

[LRob0223]

I am 1 yr post transplant and recently tested positive for BK virus. I also have a low white blood cell count. What should I expect? I am meeting with my team soon but thought I’d post here first so I can ask knowledgeable questions. Thanks in advance.

[ShyeLoverDoctor]

Depending on how muchBK virus you have, they nay choose to simply monitor. If it’s a high level, they might take you off or decrease your myfortic (or whatever secondary immune suppression drug you night be on) to let your body fight it. They will not take away your main anti-rejection drug like tacrolimus or cyclosporine. BK will not kill you, but it will kill the new kidney.

[Alkaline1 in reply to ShyeLoverDoctor]

just let them monitor it mine was up to a million they did a few infusions and got it down but they want it all gone before they put me back on Mycro it’s only a hundred and something now

[Coogen]

Good Morning, I also tested positive for BK at my first anniversary after kidney transplant. Dr reduced cellcept and scheduled biopsies every 8 weeks for the first couple of months to monitor. Cleared after 9 months, so it did take awhile to shake. So here is the unconventional dietary choice I read about and tried. I read this approach for a desperate father trying to help his daughter who had BK post transplant and could not get better. He incorporated Ceylon Cinnamon into his daughters diet and her BK numbers dropped. Sprinkled on yogurt, smoothies, pudding, etc. I thought why not and tried it out. BK numbers dropped every month. Not a miracle cure or instant success, but I believe it helped. I am not a person who uses weird herbs and I stick to traditional medicine practices. Hang in there! I know how scary hearing a Dr say you have BK is.

[metalminded]

Hi LRob. I've had my transplant for just over 11 years. I was diagnosed with BK virus around a year after my transplant.

The virus did significant damage to the transplanted kidney but it's still plugging along, thankfully.

I know there are new treatments for BK now. When I was first diagnosed, after several biopsies, I started on a medication, had an IV med done once at my transplant hospital, then was on another IV medication every two weeks at an infusion center and did that for around a year or so. Lastly, I had been on Levofloxacin up until just recently, since it's no longer considered an effective medication for the virus.

I had heard of other patients at the time had the virus clear up either with the medication, one or both of the IVs. Mine was not. It has to be non-detectable in your blood and urine. Mine no longer shows up in blood but to a small extent it does in my urine.

Though it was a long process for me at the time and a lot of needle pokes, I never felt any side effects or had any issues at all.

Like I mentioned, that was 10 years ago and treatment has changed.

I hope you virus is cleared quickly with minimal damage to your transplant!!

Keep us posted!

Best!

[ShyeLoverDoctor]

If your white count is dangerously low they can inject you with a drug to cause your marrow to make white cells but it’s very powerful and expensive . They only gave it me because my white was really really low which is called neutropenia . Drug is Zarexio I recall .

[klipodeu]

10 months after my transplant, I tested positive for BK. The value count was over 10 million via urine sample not blood. The transplant team removed me from CellCept and within a few weeks, the count was down to 6 million. Four months later, 500,000. Fast forward four years and I still have BK. The numbers are less than 200 and remained this way for about one year. The team does not plan to reintroduce CellCept (ever) and continue to allow my immune system to fight it off. They feel the number is low enough not to be an issue and still test for it every three months.