Is it normal to have filaments in the urine? I only noticed these after I started getting a bloody discharge which after many consultations was determined to be coming from my kidneys. I also have had protein and hemosiderin in my urine. This all occurred after being treated for a nasty sinus infection that has cultured out many gram negative bacteria (Klebsiella 5X in the last year and one/half) and fungi (mainly Fusarium). I can't get rid of the sinus infection and these strange looking filaments in my urine seem to correlate with the sinus symptoms especially when it is draining. I have looked at the urine under the microscope and the filaments are curved and many times they are in a tangled mass. I can see them as specks without the microscope and the same kind of filaments have been in the sinus secrections. Is it possible for whatever is in my sinuses to be coming out in my urine? If so, would it not have to go through the blood to get to my kidneys?
Any ideas on what the filaments are would be appreciated.
I would like to add that my serum creatinine has been slightly elevated several times and also potassium, but they both come back down. The GFR has been in the low 50's (normal 60-137) even when the creatinine is normal. I also have lower extremety edema most of the time now, even when these are normal (had a normal echocardiogram). Is this anything to be concerned about? I've seen 3 nephrologists and have gotten the idea that they only treat if one needs dialysis. So what do I do to not get to that point?
Please read this and respond!! I am about at the end of my rope. I'll glady pay the $16.00 again if I need to. There's a lot more to the story.
I have been on and off Vfend for the last year and 1/2. I also have an IgG1 subclass deficiency that I have been getting subcutaneous IgG for the last 3 months. Before I started back on the VFEnd and the IgG, I had red swollen plalces on my elbows that oozed out pus. I even had a place on my leg that oozed out a clear fluid for about 2 weeks. It all cleared up on the VFEnd, except my sinuses. My ID doctor took me off of the Vfend last week because he thought it was causing the edema, and I have been extremely ill ever since. This is the first day I have been able to get off of the couch in over a week except to go to the bathroom. The sinus drainage has been unrelenting. I looked at my urine this morning and it was full of these little bent filaments, debris and some longer strands that look like they could be hyphae. It is so full of junk that it is extremely cloudy. It even has little black dots in it that look like spores, but I don't know. I just know it isn't normal. I sent some similar to my nephrologist last week and never heard anything back. I also sent her 2 labs, one showing elevated potassium (has been elevated about 4 times in the past few months and one showing that the GFR is now down to 46. I have seen 2 more nephrologist at major teaching hospitials. About this time last year I had massive blood or hemoglobin from my kidneys (macroscopic). I filled 3 santitary pads of it for 3 days. I took it to a major teaching hospital and they wouldn't even try to find out what it was. The nephrolgist that I saw there said he didn't know what it was and it wasn't his job to find out. It was not coming from my reporductive system. I"ve had a complete hysterectomy, but I did have about 3 vaginal exams and a PAP that were all normal. I also had a colonoscopy that was normal. I did finally get a hemotologist to analyse it a few months ago and that is when he found the hemosiderin. This is all intermittent. It can be full of junk at one time and perfectly clear a few hours later. All the nephrologist will do is a dipstick even though I've begged them to send it to pathology to try to determine what all of this junk is. I was told that they didn't treat intermittent proteinuria, and mine wasn't bad enough for dialysis.. I've gotten the idea that the nephrogist is only useful if one needs dialysis. But I want to know what to do to keep from getting to that point. I've been to an urologist and went to the ER several times last winter when this all started and they all refered me to a nephrolgist. It's a viscous cycle. I hadn't looked at the urine for a while until this morning and it looks just like what is in my sinuses. I did a dipstick on it this morning and it showed both protein and blood, but then about an hour ago it was perfectly clear.
I had a heavy exposusre to Fusarium a while back and it has been cultured out of my sinuses. I was a biology teacher for 30 years. That is why I finally bought a microscope and started looking at this myself. I've collected both the sinus drainage and the urine and had my husband take it in, but usually noone will look at it. Since it is intermitent, by the time I feel like going myself it has usually cleared up.
. I don't know where to turn. One of the nephrologist that I saw was convinced that I had paroxymal nocturnal hemoglobinuria (??). At that time my urine was dark brown in the mornings and would clear up in the afternoons. She sent me for genetic test, but the tests that were done were negative. However, I was on prednisone at the time and I contacted NORD and they said it could affect the results. They also said that there was no genetic test for PNH. I had been on 12.5 mg. of prednisone at the time and increased it to 15 mg. My urine was never brown on that much. But my ENT wants me to go off the prednisone. I decreased it to 12.5 mg. about 2 weeks ago and have steadily been getting worse. The urine is turning brown again in the mornings So, I started back on 15 mg. 3 days ago and am finally at least able to get up for a short period of time.
Do you know anything about PNH? Does this sound like this is what I might have? Do you know anywhere that specializes in it?
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