AUTOIMMUNE DISORDERS EXPERT FORUM
Biofilm Infection

Biofilm Infection

Do you have any information or recommendation how to help those with kidney stones who get recurring UTI's from what our Urologists have told us is because of likely biofilm infection deep inside kidney stones which are produced by those who have MSK (Medullary Sponge Kidney) on an ongoing basis?  The stones are a by-product of MSK and are deep within the medullary and take a long time (if ever) to pass out.  The antibiotics taken seem to rid the UTI for awhile only for them to come back continuosly.  I've been told it's because the stones are extremely porous in nature and the infection deep inside the stone itself so an antibiotic merely acts as a band aid fix, while the infection is really still there inside the stone.

We value your input immensely here at MedHelp & thank you for your time.  I'm a member of the MSK (Medullary Sponge Kidney) Community and this is a question we get all the time.  In my case,I'm lucky since my calcium oxalate / phosphate stones are too small for lithotripsy (largest one was 4.0mm) but they cause recurring UTI's because even when they pass, new ones form due to the nature of the MSK.

C~
MSK Community
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What we have used in recent clinical trials to remove biofilm and make antibiotic-resistant UTI infections sensitive to antibiotics is Detoxamin (www.detoxamin.com) suppositories that contain EDTA.  Unfortunately, oral EDTA is not absorbed (usually less than 1%), but it is absorbed when placed in an anal suppository and tissue levels are maintained over a day.  Using every-other day Detoxamin suppositories, patients were treated with standard antibiotics that had no effect without the Detoxamin.  With the suppositories the patients showed significant decreases in pain and other symptoms while their quality of life and other indexes were positively affected. In a more recent trial using higher doses of EDTA we showed significant decreases in tissue calcifications.  If send me an email (***@****) I will be pleased to send you a preprint of this publication.  ProfGN
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Since Prof. Nicolson's e-mail address did not print out, I will send it to you via PM.
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Thank you so much for your reply, Dr. Nicolson.  

Thanks, Plateletgal -- appreciate and will look forward to your PM.

C~
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Dr. Nicolson,
  I also have MSK, with a chronic biofilm infection.  I also have Interstitial Cystitis.
Mine unfortunately from very resistant hospital bacteria.  I had the calcifications within my kidneys, and a surgery where they did not realize the instruments were not sterile, the resulting infection was only treated with 7 days of Cipro.  I assumed the pain etc. was from the stones so the infection went on about 10 years before going for help.  I have lived on 2 full strength antibiotics now for two years and and at times require IV"s.  Last Aug.
I had a procedure done by Dr. Wolf that appears to have at least broken into the biofilm' allowing the orals to work again. ( I also use an multi electrical current machine since we had read that antibiotics with low level electrical current can better penetrate a biofilm too.)

MY DOCTOR AND I HAVE CONSIDER THE EDTA ALSO, AND I WOULD REALLY
APPRECIATE THE ARTICLE AS WELL,( I WILL PM YOU MY E-MAIL ADDRESS),
HOWEVER THE CONCERN WITH ME IS THAT MY BLADDER COULD NOT TOLERATE THE EDTA TREATMENTS?  I live with a lot of chronic bladder pain already.  I also have a preservative allergy esp methlyparaben.  Can the EDTA suppositories be compounded?

Thank you for taking time to answer!

I truly appreciate your expertise and willingness to share your knowledge on
Medhelp!

Shelly
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Whoops no way to pm you the e-mail address...
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A related discussion, Response to MSKshelly was started.
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