Home         Forums  

Go Back   Marrowforums > Bone Marrow Failure Diseases > MDS
Register FAQ Search Today's Posts Mark Forums Read

MDS Myelodysplastic syndromes

Reply
 
Thread Tools Search this Thread
  #1  
Old Sun Apr 27, 2014, 05:08 PM
DanL DanL is offline
Member
 
Join Date: Dec 2010
Location: Denver, CO
Posts: 590
BK Virus

Just checking to see if anybody out there has any experience with the Bk Virus. I have had it for about 35 days and was asymptomatic until about 2 weeks ago. I have been drinking a lot and trying to avoid caffeine, but any other ideas on treatment? It is still probably a little too early for me to be reducing Tacrolimus levels too much at this point as I am only at day +60. Since there is not a lot of blood in my urine, they don't really want to pursue the other options available. So for now, it is oxycodone, water, some cranberry juice added in just to see.

Thnaks.
__________________
MDS RCMD w/grade 2-3 fibrosis. Allo-MUD Feb 26, 2014. Relapsed August 2014. Free and clear of MDS since November 2014 after treatment with Vidaza and Rituxan. Experiencing autoimmune attack on CNS thought to be GVHD, some gut, skin and ocular cGVHD. Neuropathy over 80% of body.
Reply With Quote
  #2  
Old Mon Apr 28, 2014, 12:08 PM
Marlene Marlene is offline
Member
 
Join Date: Oct 2006
Location: Springfield, VA
Posts: 1,412
Hi DanL,

So sorry to hear you got hit with the BK virus. John had it too along with haemorrhagic cystitis from the Cytoxan. His circumstances are different in that he did not have a BMT but he was without a white count for about 3 months. I can't claim that cranberries had anything to do with his healing of the bladder but after consuming a variety of cranberry dishes over a 4 week period, his bleeding stopped.

As you know, hydration is critical as is a good white count.

It will clear at some point.
__________________
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.
Reply With Quote
  #3  
Old Mon Apr 28, 2014, 04:46 PM
DanL DanL is offline
Member
 
Join Date: Dec 2010
Location: Denver, CO
Posts: 590
Thanks for the information Marlene, My white counts are up and doing their part, every white component is above the low range of normal, but the tacrolimus keeps them all from taking care of the infection

I just asked my doctor about adding cranberry juice, etc, to my diet to try and assist, even if it is only psychological and he said sure, won't hurt anything to do so.

It is nice to get confirmation from someone who tried the cranberry approach and that it may have had a positive impact. This is a nasty little infection that I would not wish on anyone, and I am willing to try just about anything to help it out the door.
__________________
MDS RCMD w/grade 2-3 fibrosis. Allo-MUD Feb 26, 2014. Relapsed August 2014. Free and clear of MDS since November 2014 after treatment with Vidaza and Rituxan. Experiencing autoimmune attack on CNS thought to be GVHD, some gut, skin and ocular cGVHD. Neuropathy over 80% of body.
Reply With Quote
  #4  
Old Mon Apr 28, 2014, 05:14 PM
Marlene Marlene is offline
Member
 
Join Date: Oct 2006
Location: Springfield, VA
Posts: 1,412
It is nasty. It was by chance that I started feeding John cranberry everything. It was fall and fresh cranberries were in season. I made him cranberry tarts and chutney, preserves, etc...

Not that you would want to take another pill but they do have cranberry capsules. You can also look into D-Mannose. It's the substance in cranberries responsible for the effectiveness of cranberries on bladder infections. It's a powder that you can mix in water or juice. It a simple sugar that doesn't mess with your blood sugar.

Here's an article on a clinical trial where they used D-mannose for UTI's and speaks to how it works. Of course this is not what you're dealing with but will give you insight to the safety of D-mannos/cranberries. I'm sure there never was and will never be trail on this for the BK virus.
http://clinicaltrialsfeeds.org/clini...ow/NCT01808755

Blueberries can also be helpful.

Glad your white count is up there. Hope you see relief soon.
__________________
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.
Reply With Quote
Reply


Thread Tools Search this Thread
Search this Thread:

Advanced Search

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

vB code is On
Smilies are On
[IMG] code is On
HTML code is Off
Forum Jump

Similar Threads
Thread Thread Starter Forum Replies Last Post
Watch and wait ends, Vidaza begins. Chirley MDS 293 Tue Nov 17, 2015 09:04 PM
Virus Bossywife MDS 0 Tue Jun 16, 2015 06:38 PM
Neuroencephalopathy and the JC Virus Maji Drugs and Drug Treatments 3 Sat Mar 9, 2013 06:51 PM
Has anyone had the BK virus? Cam Transplants 4 Thu Feb 21, 2013 09:26 PM


All times are GMT -4. The time now is 11:55 AM.


Powered by vBulletin® Version 3.6.7
Copyright ©2000 - 2024, Jelsoft Enterprises Ltd.
Forum sites may contain non-authoritative and unverified information.
Medical decisions should be made in consultation with qualified medical professionals.
Site contents exclusive of member posts Copyright © 2006-2020 Marrowforums.org