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Matt Lewis
01-19-2003, 09:44 AM
Well after reading Delfí's introduction, i thought this would be an appropriate topic to touch on.
It has been my experience in listening to people with cystinuria that diets are of minimal success when it comes to reducing the occurance of cystine stones.

The main problem with trying to controll stone formation with diet is that cystine, the "problem molecule" in the disease, is not easily avoidable. In fact, in all practicality, i'd call it impossible. It is obtained from the amino acids in our food, whether we are vegans or meat eaters. We need protein, regardless of the source, and from protein comes the amino acids. Cystine is specifically obtained from the metabolism of the amino acid Methionine, or by intake of the amino acid cysteine, of which 2 molecules react to form one molecule of cystine (see the amino acids tutorial (http://www.cystinuria.org/rm101.htm) in "Room 101").
While the occurance of these amino acids are relativly rare in most protein, they do occur, and each serving of protein (be it from meat, nuts or tofu) will contain them. Since we need protein in our diets to be healthy, i see diet in terms of reducing the cystine intake as more trouble than it's worth.
However, theoretically the less you take in the less you should put out, so there still might be some merrit to avoiding foods high in Methionine and such.

Another form of diet which is much more effective is increasing the alkalinity of the urine. In short, cystine dissolves very poorly in pH (http://www.cystinuria.org/dictionary.htm) below 7. As the urine pH increases, the solubility of cystine increases dramatically. The pH of the urine (and rest of the body) can be controlled by diet. Veggies and some fruits are great for raising the urine pH. Veggies because of the alkalizing minerals they contain, and fruits because of the citrate they contain. (Citrate is converted to bicarbonate, which is the body's pH raising component) Foods like protein are bad for this, because they lower the body's pH. pH can also be raised by supplimenting the diet with baking soda (bicarbonate) or more medically with citrate carriers such as potassium citrate, sodium citrate, and calcium citrate.

While the elevation of pH is crucial to the solubility of cystine, the number one most important dietary modification to fight cystine stones is hands down water consumption. The principle being that if there is more liquid volume present as urine, more cystine will go into solution. This situation is very analagous to trying to dissolve a sugar cube in a drop of water or a bucket; obviously the one with more water (the bucket) will dissolve the sugar cube better than the single drop. (For more on this relationship see the stone prevention tutorial (http://www.cystinuria.org/rm101.htm))

These are just my thoughts. Much of this will be going into the 2nd part of the Stone Prevention tutorial which i'll be writing as soon as i can get things set up on my new computer. Let me know your thougts; what works for you and what doesn't.
Perhaps a poll is in order? ;)
Kind Regards,
matt

Raymond Haney
03-14-2003, 04:06 PM
I drink large amounts of water daily. This includes water at night. At least eight ounces every time after elimination. This means having to get up at least several times at night. No problem. You get used to it. I've been on pinnecillamine since I was 16. Apparently I've tolerated it better than most. 8 years ago I was in a study group at UCSF. A team of European doctors worked with me.
Take this next part with a grain of salt and don't take anything as gospel. Everybody is different.
They suggested that I take 3 to 5 thousand mil. of vitamin C everyday. Cystine thrives in a very narrow PH level, hence the reasoning behind alkalization. These doctors suggested that it didn't matter which side of that narrow PH that I was on. I had a follow up with my local doctor and he hit the roof. He said I couldn't do that for lots of reasons including the increased possibility of passing calcium stones. I told him this is what I was going to do and that we would sit down and discuss it the first calcium stone I passed.That was 8 years ago. I've had periodic problems but feel I'm doing better than I have done in my whole life. We have kept track of a stone that has been in my left kidney for 6 years without getting significantly bigger .

Matt Lewis
03-16-2003, 11:26 PM
Raymond,
I've heard the same about the large doses of vitamin C helping with cystine stones. My understanding of it is that it breaks the bond between the two molecules of cysteine that compose one molecule of cystine. Cysteine, being more soluable than cystine, then dissolves more in the urine. However, i have not read any research to support this. I have heard from a friend that research (long term studies perhaps?) are being done, in Europe i think. I'll have to double check all of that info; that's just what i'm told.
Anyhow, that's great to hear that it is actually working for you, along with the extra water. Any other non-cystinuria related side effects to the vit. C that you have noticed? I know that being water soluable, taking large doses isn't supposed to be hazardous, but there's a large grey area between theory and what really happens, medically. It's great to hear the experiences of people actually doing it.

Kathy was on the vit. C a while back when trying to control a stone, but she's gotten less strict about taking it. I'm sure after reading this she'll be more willing to take it up again and ride it out for a longer period. Great news from you; thanks for the reply!
matt

steven27
05-22-2003, 07:54 AM
For me, a combination of medication, intensive fluid intake and a low-methionine (vegetarian) diet have been the key.

I take 10 Cuprimine capsules and four Urocit-K tablets per day. The Cuprimine dosage seems high, but I've been on Cuprimine for almost 24 years now, and I've suffered no ill effects. The only caveat is that I need to get routine blood and liver-function tests to make sure things are okay.

My stone incidence is at its lowest, and my pH is at its highest, since I started a meat-free regimen. My nephrologist had recommended the vegetarian diet, and I do believe there's something to it. Certainly I can't think of many instances in which going vegetarian would harm a cystinuric; however, as is the case with all vegetarians, it's important that I make sure I still consume a healthy amount of protein -- just not animal-based protein.

Only on special occasions (less than once a month, on average), I will treat myself to chicken or turkey, but at the nephrologist's recommendation, I take an extra Urocit-K afterward.

crossover
03-29-2004, 11:29 AM
17 years of active cystinuria. I was on a low protein diet for 5 years, with strict adherence. 40 grams of protein a day, counted every gram. It never really helped. And I needed a high sugar, high fat diet to counteract the fatigue that a low protein diet can cause. Drugs at the time were sodium bicarb and of course water loading.

They now have me on potassium citrate, captopril and of course water loading. I've been 16 months between percs now, so it may actually be working, somewhat, although I have more stones and am headed back to the stainless steel slab later this year. The studies that I saw with regard to potasium citrate had a 65% success rate with slowing calculi formation.

Tim Walsh
04-27-2004, 10:23 AM
I think of the four ways of dealing with
stone prevention (diet,water,pH and drugs), the
easiest I found is keeping my pH high by taking
about 400mg tablet of Magnesium Citrate every 12
hours. I also take 500mg of Vit-C in the Calcium
Ascorbate form x2, which is also called Ester-C or
buffered C. Since taking the above, my Urologist
went back in my records four years and says my
pH has never been below 7.0 which he says is
really hard to believe and thinks is the key to
my success in not forming any new stones. I eat
all kinds of meat and eggs and fish too every day!
Taking the Magnesium Citrate tablets sure beats
drinking that potassium gunk that made me gag YUCK

majosequiroga
07-24-2004, 03:07 PM
Hi I think the best result comes with diet, medication, water A LOT and alkalinzation, still there are some medicines that costs too much to me, like Acadione, it costs 43 euros plus the cost of bringing it to Argentina makes it impossible to buy. I think that people outside US and Europe find more difficult to buy either Thiola (only avaliable for us citizens only) or Captimer/Acadione