Dear Sarahi

I have been going through the exact same ordeal like you! My stones are mostly made of protein and I am in constant pain ( for over a year now). I have passed over 200 of them! I can't get rid of them, I have changed my diet, I drink a lot of water, blah blah, tried literally everything from the internet and nothing seems to work.
Urologists have been total jerks, nobody has done anything for me ( no treatment or some supplements, nothing).
I hope you got better in the meantime, I just wanted to let you know that I am passing the same types of stones like you and they seem to be very rare and nothing has been written about them.
If I find a "cure" I'll let you know but so far nothing worked.
I wish you all the best and I hope all that pain is behind you!

Deep Green

Sorry to hear you have had such a trial with these protein stones. I have had many stones over the years, but never heard of these type. Mine have all been calcified stones and changing my diet seemed to work.

To pass 200 stones is almost unbelieveable. I can't imagine what you are going through and no help from anyone. I have been told that diet doesn't cause all stones and heredity could be a factor.

I wish there were something I could do to help. I hope you find some type of relief.

Thank you, Lonestarguy:)

It's some comfort to see that other people go through the same ordeal but then you feel sorry for anyone with this disease cause you wouldn't wish this on your worst enemies.
Stones run in my family but this is just ridiculous.. LOL! Sometimes I browse internet to find some answers but then I read some horror stories and just log out even more freaked out! LOL!
Oh well, they may go away.. eventually.
If I find any remedy that works, I'll post it immediately:)

Thanks again and I wish you all the best!
P.S. Here's a link ( I hope I did it right) for some remedies from around the world.
Click here: Dissolve Kidney Stones with remedies from the Earth Clinic library of cures!

OK, this may actually work:

Click here: http://www.earthclinic.com/C1URES/kidney_s tones.html

How about this site. Do you eat a lot of protein?
http://www.pcrm.org/health/veginfo/vsk/pro tein_myth.html

Thank you so much. I've been cutting back on protein in the past few months but with no changes so far. Maybe it takes more time. (Fingers crossed).
Some sites say diet matters, some say it has nothing to do with kidney stones but I'm sure what you put in your body makes a difference ( at least for us prone to this condition).

Thanks again:)
All the best to you!

I have been passing protein stones for 4 years this month, (20% of the stones were calcium oxolate & 80% protein, now its about 99% protein & 1% calcium oxcolate). I am wondering if the lithotripsy I had 5 years earlier had anything to do with my current problem. So far I have passed well over 400 stones, maybe 500, I stopped counting, its a nightmare. I would strip the liscense to practice medicine of 99% of the Drs I have seen. Out of the first 250 stones I passed 85% of them without pain medicine. I am living in a nightmare & most Drs dont even care, which makes me realize how stupid they all are. Bunch of crooks is you ask me. Evil crooks who should burn in hell. But thats beside the point, people should not have to suffer because of bad medicine & incompetant drs. I can show a dr a letter from another dr detailing his encounters with protein stones, as well as showing them the protein stones & after they tell me there is nothing they could do (bc it would require work & they are incompetent boobs)I wonder, so the last Dr i saw who saw the protein stone (that was analyized & confirmed by another dr & the letter of another dr who has some experience with them without having to see mine) I asked, having seen the stones & proof from another dr who know about stones, do you believe protein stones are real. The Dr said "I'm not really sure". Also there is a new machine made by siemens that can detect protein in the body, but it is very expensive & not a very common machine, have been trying to find out the name of it (the radiologist could only describe it to me) still trying to find out what its called. If I knew enough about other people passing these protein stones, I can figure out what causes them & how to fix them (have a few theories), but I dont know anyone who has any ? I guess I am just tired & needed to vent & let you know you are not alone & dont feel bad, you are right the Drs are worse then jerks. Hope you can find an answer. I will try my best to figure this out, I have no life, but passing stones, I need to communicate extensively with a few people who have the same thing b4 I can figure out why this is happening. Keep the faith & hope, dont give up. Peace, Love & Happiness - J

sarahi, saw my sepcialist yesterday & we have a new theory that seems to make sense, need to see if you took something though, if so we may have an answer. The sooner the better. PL&H - J

Too much sodium will create stones. Also if you are on any blood pressure medication that can lower your potassium that can also increase your chances of stones. I've been getting stones for over 35 years!!!!

If our freedom of Speech is taken away, then dumb & silent like lambs may we be led to the slaughter. Who would have a problem with my post, maybe an incompetant Dr, Thats awful. I passed over 400 protein kidney stones, maybe 500 by now, & had no pain meds for the first couple hundred stones, ever try to pass a stone without pain meds, I have every right to be livid & never said anything wrong. I better see my post back up or byebye.

Can't tell you how many stones my daughter has passed. She passes them almost every night for tke last 6 months. The Urologists (have seen 3 diffent ones now- even Layhe Clinic) all say they are protein or debris. She has no problems, there is nothing they can do. Our 3rd Nephrologist has her on 60 mg of Potasium Citrate. Citrate level was 107 now 500. Still stones. She has LOW sodium 133.
I was actually so happy to find this site. The doctors make you think you are crazy. I didn't think anyone else had protein stones.Does ANYONE know what can be done about the protein.

URIC ACID = protein stones check out URIC ACID in wikipedia and search pub med

My daughters uric acid levels were normal. Still passing protein and crystals. Still no answer. Fourth Urologist no help. Someone has to have an answer?

I have been dealing with the same problem. They were unable to diagnose me with the stone I brought in other than to say it was made of protein.

It is only in 1-2% of ppl with kidney stones, but it sounds like a fit. There is a great web support group, but I can't find it right now - I will look for it and post it if anyone is interested.

Jordan