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Kidney Disease & Disorders Community
This patient support community is for discussions relating to kidney disease and disorders, dialysis, self care, and transplants.
MSK chronic infection with no solution
by MSKshelly, May 03, 2008 07:41PM
I hope I can get some help, I have been diagnoised with Medullary Sponge Kidney disease. Both of my kidneys are full of stones, the largest of which is 6mm in the left kidney. I also have IC (Interstitial Cystitis), About 10 years ago half way through a surgery to remove a large stone, they realized the instruments were not sterile! In the end I came down with a bad hospital infection that was not properly treated! Everyone was so worried about suit, (which did not occur), we had to get a new URO, and I only took 7 days of Cipro.
Since that time I got progressively worse but thought it was just from the stones. In 03 I started with my URO here who has done everything he can to help me. I am living and have been on 2 full strength antiibiotics. We believe a biofilm infection has set up with in the stones. The orals are just not doing it any more and we have not more oral solutions. For about 3 weeks I was peeing blood. We did all the test and 10 days of gentamician IV's which finally cleared it up, No other reason for the bleeding could be found, no stone in the ureter, yet my kidney pain continues!
My URO is at a loss of what to do! I test my own urine with dipsticks, I just bought the same ones his office uses so we have not differences, I am not showing blood now, only low level WBC but I continue to have a lot of protein in my urine. My GFR rating before the IV's was 64.3. I also noticed my creatine level was up from .7 to a 1 and BUN levels were up from 8 to now 12. We are pretty desperate for answers but have not found anyone to help!
I tool cipro and avleox for almost a year, and now get the ligament pain withint two days of restarting! Also complex cultures we did to find the low level bactiera showed resitance to levaquin and most likely Cipro
Macrobid doens't do it!
Septra and minocycline for the last year or so have given me the best and longest relief!
the bacteria we are targeting are pseudomonas and acineobacter!
Any other orals you can think of????
I take a lot of natural antibiotics as well and have started on D-mannose. I can't say it has turned things around but at least no bleeding this week so who knows!
Any input would be greatly appreciated!
Shelly
Since that time I got progressively worse but thought it was just from the stones. In 03 I started with my URO here who has done everything he can to help me. I am living and have been on 2 full strength antiibiotics. We believe a biofilm infection has set up with in the stones. The orals are just not doing it any more and we have not more oral solutions. For about 3 weeks I was peeing blood. We did all the test and 10 days of gentamician IV's which finally cleared it up, No other reason for the bleeding could be found, no stone in the ureter, yet my kidney pain continues!
My URO is at a loss of what to do! I test my own urine with dipsticks, I just bought the same ones his office uses so we have not differences, I am not showing blood now, only low level WBC but I continue to have a lot of protein in my urine. My GFR rating before the IV's was 64.3. I also noticed my creatine level was up from .7 to a 1 and BUN levels were up from 8 to now 12. We are pretty desperate for answers but have not found anyone to help!
I tool cipro and avleox for almost a year, and now get the ligament pain withint two days of restarting! Also complex cultures we did to find the low level bactiera showed resitance to levaquin and most likely Cipro
Macrobid doens't do it!
Septra and minocycline for the last year or so have given me the best and longest relief!
the bacteria we are targeting are pseudomonas and acineobacter!
Any other orals you can think of????
I take a lot of natural antibiotics as well and have started on D-mannose. I can't say it has turned things around but at least no bleeding this week so who knows!
Any input would be greatly appreciated!
Shelly
Post Comment
I'd like to share some exciting news with you. There is a new MSK (Medullary Sponge Kidney) community here at MedHelp!!
I am a member of this MSK Community, as I suffer from MSK along with numerous kidney stones and UTi's.
Please stop by and join this wonderful new Community at MedHelp. Here is the link:
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http://www.medhelp.org/forums/show/256
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You'll see some others who share your diagnosis .. I am sure we can lend a hand for you ...
Cheryl - MSK with stones