Anyone here a Urologist or Nephrologist that wants to give thoughts on a *rare* case?

GCBC

GCBC

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Been suffering with something for over a decade that nobody can figure out. Went to a half dozen urologists when I was 22 ,did all the tests and they dismissed it saying I made it up and was in my head since I couldn't replicate it in the clinic. Even tho I have video and picture evidence of the stuff...
Having outrageously painful sediment in urine like passing 100-200x .25-1mm kidney stones at a time. This happens ONLY after surpassing some sort of internal threshold worth of protein or amino acids thats common between ANY animal meat or beans & plant proteins between 4hrs and 3days after, then it will absolutely vanish for weeks or even MONTHS at a time never occurring again until I end up eating a vegan burger, plus a protein bar and a can of baked beans or whatever combo in too quick of a 72hr window that surpasses this extremely low, and unknown threshold... Im 33yrs old, usa, male, very fit bicycle racer, super well hydrated, no drugs no alcohol no bullshit thats obviously going to cause an issue for anyone. I generally consumer less than 50g protein a day (which is terribly low for an athlete) and I went vegan because of this rare disease once I figured out that meat was causing it initially, then further refined it to all proteins...

family has no history of kidney stones, ive never had one (maybe I have dunno)

Just got my account blocked on Facebook for posting this in a kidney/urology group so im posting here with fingers crossed.

Can't go to any local doctors as ive given up completely here and I know more than they do... ive spent 10yrs searching for something on this and google only has stupid obvious stuff thats not even close to whats happening.) Also I do have a bit of a medical background but I dropped out to continue racing career.

I have pics and video (didnt want to post here and get this account banned) of it and can speak intelligently and with detail on the subject if anyone here is inclined to give this some thought.



TLDR: pass hundreds of white, soft, small bits in urine after consuming to much protein (very very small mounts) and then never occurs again until over consuming protein again, but the amount keeps decreasing year after year.



its a stretch I know, but im desperate
 
Has a doctor talked about the possibility of uric acid stones? If you exercise a lot and/or aren’t staying hydrated, the risk of uric acid stones developing is increased.
 
jux t said:
Has a doctor talked about the possibility of uric acid stones? If you exercise a lot and/or aren’t staying hydrated, the risk of uric acid stones developing is increased.
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Extremely well hydrated, drink 1gallon plus every single day and it’s nearly clear. Urinate at least 8times a day if not more like a dozen. Had bladder and kidneys scanned 2yrs ago no signs of anything hard at that time. Never passed anything that wasn’t soft, always same color shape size bits.
 
madcap_magician said:
Have you had labs done on the things you're passing in your urine?
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No, every dr said refused to test a sample I brought in. They said if I can’t produce it on site they won’t test it.
Absurd.
Can’t produce it onsite because i don’t know when it’s going to happen
 
Definitely not a doctor, not even a google doctor, just a google vet, but in case any of this helps....

My dog had struvite bladder stones a few years ago that required surgery, so I dug into that when it happened to see what we could do to prevent it happening again. The big thing there was switching her to a low protein diet and trying to keep her from getting UTIs. Totally a way too personal question you don't have to answer publicly, and I don't even know if it would be the same for humans, but have you ever been checked for UTIs, and/or do you have any symptoms of a bladder infection? From https://vcahospitals.com/know-your-...e bladder stones,the urine to become alkaline. on dogs: "Struvite bladder stones usually form as a complication of a bladder infection caused by bacteria that produce an enzyme known as urease. This enzyme breaks down the urea that is normally present in urine, causing an excess production of ammonia; this ammonia production then causes the urine to become alkaline. Ammonia in the urine also causes bladder inflammation. Under these environmental conditions, struvite crystals will form and collect around any cells or debris that may have formed in the bladder because of inflammation."

Extra ammonia in your urine would smell, but drinking as much water as you do might dilute any smell so that it'd be harder to notice if present.

For dogs vets can send the crystals to the University of Michigan for analysis (knowing whether they are struvite or calcium oxalate is important for prevention). I would wonder also if there is a private lab you could get the sediment checked for composition. Knowing the composition I'd expect to make narrowing down on a cause easier.
 
GCBC said:
No, every dr said refused to test a sample I brought in. They said if I can’t produce it on site they won’t test it.
Absurd.
Can’t produce it onsite because i don’t know when it’s going to happen
Click to expand...

Have you tried a private physician? Pay out of pocket? I agree it’s ridiculous that they won’t test specimen, but perhaps a physician not beholden to insurance —a different mindset—will try to get to the bottom of this. Truly feel badly for you…
 
As a retired provider, I will say that most providers will send for analysis stone/sediment collected outside of a facility since most are passed outside. That is why strainers are provided to patients.

Stating that you know more than the urologists, but looking for answers on a knife forum is mind boggling to me. I am not saying that to be a jerk, and I am a proponent of people learning as much as possible from online resources like Mayo Clinic, etc.

Having a thorough history, exam, and labs is warranted and does not have to be done by a urologist.
 
I would attempt to alleviate some of the symptoms by consuming citric acid on the daily along with K2.
 
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