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recurrent life-threatening pyelonephritis

25 yo dgt with UTIs beginning in college age 18.Became more freq. and then kidney infections. Hosp more than not x 1 yr,  now responds only to IV ABT;last week hosp with Klebsiella pneumoniae kidney inf, a virulent "super-bug" with 50% mortality rate. Now responding to treatment. April hosp. with chest pain: new condition...sphincter of odi dysfunction, snipped surgically. Mayo Rochester diagnosed her with Loin Pain Hematuria Syndrome (kidney pain and blood in urine without any kidney damage)since she is always in severe bilat flank pain (moderately controlled with narcotics) and has chronic hematuria. Has consolidated care at Brigham and Women's Hospital Boston but they are at a loss for etiology of her on-going infections, as are immunologist, neurologist, cardiologist, endocrinologist, gastroenterologist, urologist,nephrologist. Every test, CTscan, sonogram negative. Yet decline continues with hosp almost continuously with kidney infections. Now life-threatening infections. Recently consulted doc at Cleveland Clinic via email and he wondered if the sphincter of odi and something with the ureters may both share the same smooth muscle pathophysiology. Is there anywhere else you can point us? I fear time is running out for my daughter. Thank you. Elizabeth  for Caitlin
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Difficult to evaluation over the internet, and it is unlikely that I can come up with something that your consultants, the Brigham and the Mayo haven't already thought of.  

I am sure that anatomical tests like a cystoscopy has been done to evaluate the anatomy of the lower GU tract.  Prophylactic antibiotics can also be considered to prevent further infection.

Another opinion can be sought at another major academic medical center.  

I am not aware of Sphincter of Oddi dysfunction being connected with recurrent urinary infections.

These options can be discussed with your personal physician.

Followup with your personal physician is essential.

This answer is not intended as and does not substitute for medical advice - the information presented is for patient education only. Please see your personal physician for further evaluation of your individual case.

Kevin, M.D.
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