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  • Recurrent pyelonephritis - immune disorder or kidneys?

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    Old 08-19-2016, 07:37 AM   #1
    smksport
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    Unhappy Recurrent pyelonephritis - immune disorder or kidneys?

    I have been having recurrent kidney infections every 6 months since graduating from college 4 years ago... not to be mistaken with simple UTIs. I've been in and out of hospitals with pyelonephritis - my symptoms have included low grade fevers, debilitating back spasms, chronic fatigue, swollen eye lids, and (obviously) positive urine cultures. My last episode of pyelonephritis was in mid-June, and I wound up throwing up and becoming very ill. I was put on IV antibiotics, and then treated with other antibiotics for 3 weeks. My urologist did a cystoscopy after one week of antibiotics, and he said my bladder looked normal, but he had to remove several polyps from my urethra. He said that they could either be the cause or effect of my infections, but it appears they may have just been the effect (as I now have another infection). He did not view, or scope, the ureters or the kidneys. Now, about 3 weeks after finishing my antibiotics, I am getting the same back spasms in my right, and my culture tested positive for Group B strep. I have no idea what is going on, but it's taking longer and longer for antibiotics to kick in (sometimes they don't even work, and I need rosephin shots). I've been put on Macrobid and Nitrofurantoin, etc. prophylactically for two years, and it didn't do a thing. I continued getting pyelonephritis regularly - at least twice a year. On a possibly related note, I've been struggling with some autoimmune disease-like symptoms over the past year - I would like someone to figure out if all of this is related, because I'm out of options and money at this point. I've been feeling general malaise nearly every day - drowsy, confused, drained, and generally ill. I have been diagnosed with horrible dry eye (the driest she has even seen, and I'm only 26)... there isn't one second of the day that my eyes aren't red, no matter how many drops go in. I've also been having skin problems... dryness and scaling (as well as melasma, and I'm not pregnant, never have been), and for the past three weeks I have had red blotches forming all over my stomach (a couple on my side). And, I have lost a lot of hair in the last year. I wind up losing at least a fist of hair every day. I've been tested for several things... the only things doctors have found that are out of the ordinary in my blood work are a low WBC count (4.0), a high cortisol level, and an elevated rheumatoid factor (52). I'm negative for all STDs, and many diseases like Lyme, Ehrlychia, Mono, etc. I've lost about 18 pounds in the last year unintentionally - I got down to 95 pounds, which is way too low for myself as an athlete. I've gained about 5 back now, but I'm still far too low. I do have a partially duplicated right ureter (that is where 90% of my spasms begin - on the ride side flank/back). The duplication comes out of the kidney, and then they join before reaching the bladder. Is there anything you can think of that might be causing these infections? They are making me lose my zest for life - I'm a professional athlete, and I've had to stop all activity because of these. I am so desperate for an answer... please, please, please help. Thank you so much for your time.

     
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    Old 09-03-2016, 12:20 PM   #2
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    Re: Recurrent pyelonephritis - immune disorder or kidneys?

    Quote:
    Originally Posted by smksport View Post
    I have been having recurrent kidney infections every 6 months since graduating from college 4 years ago... not to be mistaken with simple UTIs. I've been in and out of hospitals with pyelonephritis - my symptoms have included low grade fevers, debilitating back spasms, chronic fatigue, swollen eye lids, and (obviously) positive urine cultures. My last episode of pyelonephritis was in mid-June, and I wound up throwing up and becoming very ill. I was put on IV antibiotics, and then treated with other antibiotics for 3 weeks. My urologist did a cystoscopy after one week of antibiotics, and he said my bladder looked normal, but he had to remove several polyps from my urethra. He said that they could either be the cause or effect of my infections, but it appears they may have just been the effect (as I now have another infection). He did not view, or scope, the ureters or the kidneys. Now, about 3 weeks after finishing my antibiotics, I am getting the same back spasms in my right, and my culture tested positive for Group B strep. I have no idea what is going on, but it's taking longer and longer for antibiotics to kick in (sometimes they don't even work, and I need rosephin shots). I've been put on Macrobid and Nitrofurantoin, etc. prophylactically for two years, and it didn't do a thing. I continued getting pyelonephritis regularly - at least twice a year. On a possibly related note, I've been struggling with some autoimmune disease-like symptoms over the past year - I would like someone to figure out if all of this is related, because I'm out of options and money at this point. I've been feeling general malaise nearly every day - drowsy, confused, drained, and generally ill. I have been diagnosed with horrible dry eye (the driest she has even seen, and I'm only 26)... there isn't one second of the day that my eyes aren't red, no matter how many drops go in. I've also been having skin problems... dryness and scaling (as well as melasma, and I'm not pregnant, never have been), and for the past three weeks I have had red blotches forming all over my stomach (a couple on my side). And, I have lost a lot of hair in the last year. I wind up losing at least a fist of hair every day. I've been tested for several things... the only things doctors have found that are out of the ordinary in my blood work are a low WBC count (4.0), a high cortisol level, and an elevated rheumatoid factor (52). I'm negative for all STDs, and many diseases like Lyme, Ehrlychia, Mono, etc. I've lost about 18 pounds in the last year unintentionally - I got down to 95 pounds, which is way too low for myself as an athlete. I've gained about 5 back now, but I'm still far too low. I do have a partially duplicated right ureter (that is where 90% of my spasms begin - on the ride side flank/back). The duplication comes out of the kidney, and then they join before reaching the bladder. Is there anything you can think of that might be causing these infections? They are making me lose my zest for life - I'm a professional athlete, and I've had to stop all activity because of these. I am so desperate for an answer... please, please, please help. Thank you so much for your time.
    You do have several symptoms of an autoimmune disease, and labs suggestive also (low WBC and high RF). Many people with autoimmune diseases have increased susceptibility to infection. There can also be an immune deficiency that coexists. I would suggest you get immunoglobulin tests done (IGG, IGM, and
    IGA)to see if you have any deficiencies. These can be treated to prevent infection. An immunologist would be helpful with this. A rheumatology Dr would be helpful for the autoimmune workup. Because of the significant weight loss, I would have thyroid antibody and hormone levels checked to rule out Hashimoto disease with hyperthyroidism. Also be sure to wipe front to back and urinate after intercourse. The anatomic variation of your ureter on right side may be a contributor to the infection as well. Let us know what you find out and good luck with your search.

     
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