FAQ - Cystinuria
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Looking for people who pass cystine stones (cystinuria)?


Hello,

I am looking for someone who produces cystine stones. I am working with a university laboratory to do some research on kidney stones. We are happy to compensate for stones donated,

Thank you
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Cystinuria as you know results from a failure of reabsorptive transport in the proximal tubule as a result of two gene encoding mutations.

Children at risk can usually be identified after age 2. Because of the risk of renal damage, some clinicians choose to use prophylaxis (preventative medicine) with agents that form mixed disulfides with the cystine.

I do not know that much about this however cysteine is an essential dietary element to maintain our immunity, detoxify, and the bodies only natural internal antioxidant.

Since cysteine is made of two cystine molecules bound together with a sulfa hydroxyl group of molecules and cystine is basically a poison and as such, normally our bodies expel it, it got me to wondering.

It might create some interesting research fodder to consider if there was a glutathione and or cysteine connection.

From there you might be able to go backwards and find alternative ways to treat and care for this problem.

There are some wonderful things on the frontiers on knowledge related to treating many diseases by boosting Glutathione levels. In many states, the treatment may be covered by Insurance for our kids. Since the only approved method of boosting GSH in pediatric patients (in the Physicians Desk Reference) is all natural and not a drug, there are almost no side effects and few contraindications.

Dr Bunos at McGill and Dr Jimmy Guttman are two of the leading experts on the subject.

Just a thought, hope it helps.  (+ info)

cystinuria or cystine stones?


Does anyone else have this?
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aka cystitis and kidney stones, many millions of people have suffered with this.  (+ info)

I think I have cystinuria?


does anyone know anything about this rare condition. I believe to have radiolucent kidney stones which are rare and can either be made up of uric acid or cysteine. I had an ultrasound and KUB done. I'm very worried they might be pure cysteine because those are impossible to treat.
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Amminoaciduria is present with cystinuria. A lab should be able to detect the other aminoacids and give a diagnosis.  (+ info)

Cystinuria and muscle gaining products?


I've had cystine stones for the past 5 years (can produce about 50 stones a month but not so much lately) but I would like to use a muscle gaining supplement. I assume I can use soy-based products but I've heard they don't work as well. Are there any good powders out there that don't contain L-Cysteine or other amino acids that can't be tolerated by cystinurics? I have extensive knowledge of this condition yet have never heard this topic discussed before. If you can provide sources or links to case studies or other research, that would be most helpful.
Thanks for trying to help but you gave advice without knowing anything about my condition!! That diet you gave me would make me spit out about kidney stones about 10 times a month because CYSTINURIA means my kidneys don't function well with animal protein!!

Please don't answer if you do not understand this medical condition. I'm only 31. I don't want a kidney transplant just yet thank you. ;)
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I would not take any supplements just a vitiam like centrum
Nothing beats healthy eating.
Eat a combination of lean protein and healthy carbohydrates every few hours throughout the day to speed up fat loss and maintain stable energy levels. For best results, eat six times a day. Weight train intensely, three times per week on alternating days with aerobic exercise three times per week.

Protein (lean chicken, fish and beans)
Carbs from fruits and vegetables
Drink 10 to 20 glasses water per day NO SODA  (+ info)

If cystinine crystals are present in a patient's urine sample,what is the diagnosis and treatment?


Between these two answers,which 1 is the correct answer.. Cystinuria or Urinary Tract Infection
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  (+ info)

Any genetic link to these health disorders?


Cystinuria, Chronic Bronchial Asthma, Under-developed lungs?
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pulmonary hyperplasia  (+ info)

Potassium citrate and potassium chloride?


If someone has been on Potassium citrate (urocit-k) for 9 years (for Cystinuria/Kidney stones), why would a doctor have them to start taking both the potassium citrate and the potassium chloride, together? Especially if that person has developed High blood pressure?
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  (+ info)

Odd symptoms,what could they be?


I have had cystinuria since I was ar. 11 (now 21).
I have been on Thiola and Urocit-k, after having 3 surgeries due to kidney stones.
Now, my doctor tells me I have low iron anemia, and low vitamin d levels. (puts me on vitamin d and poly iron forte.)
I have mod. to severe bone and muscles pains.
My neck and psine feel like they burn all the time. (This has been occurring for ar. 5 1/2 years now, and is getting worse.) Plus, I have been having pains beneath my belly button.
I have hypertension and my doctor asked that I be checked for Polycystic Kidney Disease.
Tests so far have been negative for PKD.
What could be causing my problems?

Any help will be highly appreciated!!!!
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  (+ info)

What could these symptoms be from?


I have had cystinuria since I was ar. 11 (now 21).
I have been on Thiola and Urocit-k, after having 3 surgeries due to kidney stones.
Now, my doctor tells me I have low iron anemia, and low vitamin d levels. (puts me on vitamin d and poly iron forte.)
I have mod. to severe bone and muscles pains.
My neck and psine feel like they burn all the time. (This has been occurring for ar. 5 1/2 years now, and is getting worse.) Plus, I have been having pains beneath my belly button.
I have hypertension and my doctor asked that I be checked for Polycystic Kidney Disease.
Tests so far have been negative for PKD.
What could be causing my problems?

Any help will be highly appreciated!!!!
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Could be some form of kidney dysfunction. What does your doctor say? Have you been referred to a specialist?  (+ info)

Strange symptoms? 21? Help!?


What could a person have if they don't have Hypothyroidism, Lupus, Rheumatoid Arthritis, Leukemia, or Anemia and they still suffer form the following symptoms, at age 21? (And what if the person has already been diagnosed with Cystinuria, Bronchial Asthma,moderate dextro-scoliosis and a weakened immune system?)

* All their joints hurt moderately to severely
* Joints pop or snap audibly
* Neck stiffness for over 30 minutes in the morning
* Fast heart rate after moderate to strenuous exercise.
* High blood pressure
* Dizziness
* Panic attacks / social anxiety problems
* Depression
* TMJ
* Their spine feels like it burns

Any help would be appreciated!
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You have quite a few symptoms of having a "connective tissue disorder" google it and see if you find anything familiar about yourself there or any of your blood relatives...You may have arthritis beginning...any of your blood relatives have bad arthritis or advanced symptoms similar/same as yours? Your parents and grandparents are a good clue to anything you may have inherited. Neck stiffness may just be a need for a new pillow or you are sleeping badly or it may be the start of arthritis which is something I have in my whole spine...I also have mild scoliosis.

I had a feeling for all my life that something was not quite right...I ached more than most people my age as well as an intolerance to exercise and bad joints amongst other things. It turns out I do have a connective tissue disorder and I have a heart defect as well.

Good luck...I hope you find a solution for your problems.  (+ info)

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