Help with Chronic Calcium Oxalate Kidney Stones

[stoneybologna]

I am a sufferer of chronic Calcium Oxalate kidney stones. I had my first one when I was 13 years old. At that time they did many tests and I have heard all kinds of reasons as to why they thought a 13 year old would have, not one, but many kidney stones. Most of these reasons were the obvious - diet: soda was the big thing they said was causing my stones. I of course quit drinking soda and of course kept getting stones.

Over the next couple of years I went to see various kidney specialists - I had dozens of CT scans, xrays and MRI's. One specialist told me that i had an irregular valve in my kidney - something no one has ever seen again. Every doctor I tell this to today looks at me like i am crazy. Another of the specialists said it was a metabolism issue and would resolve itself when I turned 18.

So the years pass and so do the stones. I am constantly in pain. I cant do the things my friends can do because activity produces pain. I can remember trying to keep up with my friends and the pain would come on so sudden and severe causing me to black out or faint. I also remember times in high school puking in the trash can at the nurses office from being in horrible pain.

So my 18th birthday finally comes... and just as promised... the stones suddenly seemed to stop forming..!!! for a whole year... and then...

They came back with a vengeance. I suddenly was in terrible pain. I remember suddenly having to vomit and I leaned over our balcony - screamed and violently threw up. Nothing sparked it.. it was just a sudden horrible pain. I was rushed to the ER while screaming in agony. At the ER they did a CT and I had 20+ stones in each kidney all at least 5mm - 6mm.

The next 9 or so years have been horrible. I am in pain every day. While the pain varies it is still not a life i wish for anyone. I have gone to at least 20 urologists and specialists etc etc.

I have done every test they have asked of me: 24 - 48 urine tests, blood tests etc.

I have tried every medication they have prescribed: uroicit K, chlorathaladone, etc.

I have had many surgeries: I did lithotripisy in 2009 and woke up in even more agonizing pain then i was in before i went under. I ended up having to say in the hospital over night. The urologist the preformed the lithotripisy acted like I was crazy and said that he had preformed lithotripisy on many other people today and not a single one of them had any pain.

I have also done 2 uteroscopies in the past 3 months removing 16+ more stones.

Here is the weird part: Even after all the stones are gone I am still in pain. I have been checked for GI issues and any other issues that are in the areas of pain. Nothing. The only thing they have ever found are kidney stones.

I have been checked for parahyperthyroidism and other thyroid issues many times. Test always come back negative.

My calcium levels are barely high 10.2 or so. My oxalates are always high in my urine even when I am on a low oxalate diet. I have changed my diet in every way my doctors have suggested along with diet recommendations I have discovered in my own research.  I am a vegetarian and have been for 2 years. I eat very well and I am very healthy other than my stones. I do not drink alcohol or smoke. I drink coffee (about a cup a day) and as you can imagine... CHUG WATER ALL DAY.

As mentioned, in the past 3 months my urologist has done to uteroscopies to clear out all of my stones. After just a couple of months I have already formed a new stone. its a 5 mm stone on my right side.


Here are some more weird things:

- I almost ALWAYS only have pain on the LEFT side. I never really hurt on the right. It has always been this way

- the pain is worse at night

- It often times gets worse after i eat a large meal

- my left kidney has pock marks in it (they saw in my last urteroscopy)


Anyway, all of the urologists have given up on me. I have tried everything and so have they. all they can recommend is pain management.

I figured id put my story up here and see if anyone has anything to say.

Please, if anyone has any information that could help me please - I am literally begging - let me know.

[GADforever]

My doctor just says to drink more water...like it's not a big deal.  But I don't think she knows what it feels like to have them.  I started getting what I thought was uti's after I got in my 40's.  I had my first kidney infection at 45. They put me on a preventative antiobiotic regimen for 3 mos. after they cleared that up.  I have had blood in my urine 2+ ever since.  Went to 2 urologists for all kinds of testing.  They never said anything about stones.  When I moved to Las Vegas at 58 yo they found kidney stones and like I said the regular MD just said drink more water.  So I don't know if those 2 urologists just missed the stones or what the blood in my urine is really from.  

[WILDFLOWER61]

HI MY NAME IS LINDA AND MY HUSBAND GENE HAS KIDNEY DISEASE. I WAS JUST ABOUT TO SIGN OFF THEN THOUGHT I WOULD SURF SOME MORE.WHEN I WAS READING YOUR STORY IT COULD OF BEEN GENE WRITING IT. HE HAS HAD PROBABLY 80 KIDNEY STONES. HE IS SLEEPING RIGHT NOW BUT IN THE MORNING I WILL WRITE SOME MORE CAUSE HE CAN REMEMBER THIS BETTER BUT I AM SURE HE HAD AND IS STILL HAVING WHAT U WROTE. HE HAD TO MAKE SOME CHANGES THOUGH SO I HOPE AND PRAY WE CAN HELP YOU. HE HAS THE SAME KIND OF STONES YOU DO LATER STONEY.!

[toourlady89]

Hello,
Kidney stones can be or are caused by too much calcium and lack of Magnesium> Since you are researching. I'd like to direct you to Search Magnesium and kidney stones. This is one sign of lack of Mg, also included is anxiety and hundreds more., Dr Carolyn Dean's book is amazing. "The Magnesium Miracle.". It will help you understand your symptoms and have instructions what to take and how much,and you will be amazed at what problems lack of Mg can cause. Youtube is another good source for searching on Magnesium, several clinicians have recorded reports and findings. Also make sure to take note of oral magnesium replacement and transdermal Mg at the same time. Oral Mg takes 6 to 12 months before it would build up enough in your system, while transdermal Mg will work instantly but you have to spray it on frequently. I got used to it. I use both but oral replacement is much simpler eventually. I have put my whole household, friends and family on Mg supplementation. You probably will end up doing the same once you do your research. Its best to get the books too. They have further info that won't be on line nor on Youtube.  
The other book is "Transdermal Magnesium" by Dr. Mark Sircus... with instructions on how to use it , He is also on Youtube.
Good health and good luck.

[ChitChatNine]

Hi,  have you ever had an IVP with dye follow through to rule in or out MSK (Medullary Sponge Kidney) .. it's the gold standard to diagnose this condition.  You may want to stop by the MSK community and there are others with your symptoms of so many stones in each kidney.


MSK: http://www.medhelp.org/forums/Medullary-Sponge-Kidney-Disease-MSK-/show/256

Also our health pages have lot of info:  http://www.medhelp.org/health_pages/list?cid=1036

Please keep in touch . .I had a terrible episode this spring .. I can feel your pain.  

C~
MSK w/stones