1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
The ePatient Revolution
Ryan Prior shares his experience and his thoughts from attending the Stanford Medicine X Conference as he contemplates the rising of the ePatient Revolution ...
Discuss the article on the Forums.

Alex, about your post.....uric acid. I wonder about kidney stones

Discussion in 'General Treatment' started by Sallysblooms, Dec 11, 2011.

  1. Sallysblooms

    Sallysblooms P.O.T.S. now SO MUCH BETTER!

    Messages:
    1,767
    Likes:
    332
    Southern USA
    You talked about uric acid in another thread. I wonder if you have any idea how this ties into kidney stones. I have them at ALLLLLL times. I have gone through so many procedures under anesthesia for the last 6 years or so. Lithotripsies and one procedure where they went up and lazered from the inside. THEN put in a HORRIBLE stent. Spend the day after in the emerg. room. I also NEVER pass them. They just grow...:(

    I have urine that is not acidic. I am supposed to take Potassium Citrate and drink lots of lemon juice. It is genetic, but I am by far the worst in my family.

    Just wonder what you think. I think the Potassium is dangerous since you are supposed to check the check the levels if you take it. Also, I wonder what it does to the blood pressure.

    Just in case you have any ideas. Maybe others can help also.:Retro smile:

     
  2. alex3619

    alex3619 Senior Member

    Messages:
    7,658
    Likes:
    12,409
    Logan, Queensland, Australia
    Hi Sally, it depends on what kinds of kidney stones. I am not expert in this area. Urinary acidity might indeed improve things, but uric acid can form kidney stones too. Maybe someone else can comment?

    Potassium supplementation should be monitored by a doctor I suspect.

    An organic acids profile of your urine might tell you which specific acids are missing - and this might help identify the problem.

    Bye, Alex
     
  3. Sallysblooms

    Sallysblooms P.O.T.S. now SO MUCH BETTER!

    Messages:
    1,767
    Likes:
    332
    Southern USA
    I have had urine testing several times. I think I have calcium stones, they are VERY hard unlike some stones. The most common kind. I wish I could just pass them.
     
  4. alex3619

    alex3619 Senior Member

    Messages:
    7,658
    Likes:
    12,409
    Logan, Queensland, Australia
    Hi Sallysblooms, the devil is in the detail. If the urine is under acidified, it will be because of lack of specific acids. There are many such acids in the urine. Which acids are deficient will say a lot about the process. If very specific acids are deficient it might allow your doctors to identify specific problems. However if all acids are deficient its probably a kidney issue, although there could be other processes that lead to an excessive alkaline state.

    If your problem is genetic, do they know the specific defect? The advice I am giving may not be relevent if the genetic issue is already well characterized.

    This is not really my area, although I did know a lot more about this some twelve years ago, and at that time still knew enough to partially interpret an organic acids urinary screen. Now I am less certain, I have forgotten most of it.

    Bye
    Alex
     
  5. Sallysblooms

    Sallysblooms P.O.T.S. now SO MUCH BETTER!

    Messages:
    1,767
    Likes:
    332
    Southern USA
    Thanks. I will ask more next doc. visit.
     
  6. Annesse

    Annesse Senior Member

    Messages:
    163
    Likes:
    17
    Hi Sally, the problem may be the inability to carry protein-bound calcium. If you are unable to properly digest proteins, your body would deposit the calcium in your soft tissues. Wherever this happens, pathology occurs: in the soft lenses of the eyes (cataracts) in the kidneys (kidney stones). I will be getting into a diet soon in the discussion on the other thread that should rectify this for you. This has been the case with others. In the meantime, I would drink lots of whole leaf herbal teas. I am an herbalist myself and have successfully used herbal teas to treat kidney stones. I am the herbalist mentioned in this article.

    http://rapidcityjournal.com/lifesty...cle_017d21fc-6aa9-11df-a009-001cc4c002e0.html

    You could call Andrea at Healing Spirits Herb Farm. She could make you an herbal blend. (I have never met her, but I have ordered herbs from her myself and her knowledge and integrity are unmatched.)
     
  7. Marg

    Marg Senior Member

    Messages:
    343
    Likes:
    53
    Wetumpka Alabama
    Hi,

    I have heard from alternative doctors and naturopaths that people get kidney stones because calcium is not working right so the person actually has a calcium deficiency.

    My calcium is always very high in any kind of testing but I have not had any stones yet but it worries me. I take very litte now and much more magnesium. Most people with FM have calcium in the wrong place according to one doctor. His theory was that the lumps and bumps of FM were calcium and phosphate in the wrong places. Who knows for sure but something is causing the calcium to be wrong.
     
  8. Sallysblooms

    Sallysblooms P.O.T.S. now SO MUCH BETTER!

    Messages:
    1,767
    Likes:
    332
    Southern USA
    Yes, the advice used to be, do not eat calcium if you have stones, it is the opposite. I get my calcium. I am a super stone maker, my doctors just can't believe it.
     
  9. Abha

    Abha Abha

    Messages:
    136
    Likes:
    46
    UK
    Hi Sallysblooms,
    I have CFS/ME..other autoimmune problems too including B12 deficiency.Around 2001/2(?)I had kidney stones diagnosed(in bad positions/likely to cause further infection)and was advised to have them removed.Before that too as far as I recall i had high uric acid levels for a number of years.Also i had fallen and broken my leg.The urologist/surgeon(S.Africa)advised open surgery.I had talked to him re the options open to me before the operation.I had 5 stones removed(brownish in colour).According to the surgeon in Tampa who later operated on me for parathyroid disease(hyperparathyroidism)I would have had parathyroid disease at that time too.You can read up on this at www.parathyroid.com.....Dr Norman's site is excellent(section for calcium problems etc there/diagrams too and a video link).My uric acid levels are still on the high region of the reference range even though i had the stones removed and the parathyroid tumour(adenoma?) removed too.My BP got higher as the years passed.More recently it had bigger spikes and eventually my GP put me on Lercanidipine blood pressure tablets.
     
  10. heapsreal

    heapsreal iherb 10% discount code OPA989,

    Messages:
    7,390
    Likes:
    4,782
    australia (brisbane)
    Im not sure if its been mentioned in this thread but my cfs doc says uric acid works with high cholesterol like an antioxidant in the body and is possibly proof of oxidative stress going on. My uric acid is slightly high as is my total cholesterol. Im a low carb protein and fat diet man and follow atkins diet principles and remember reading that he said triglyerides are the biggest indicator of heart disease and on his dite my triglyerides have always been good, if i do eat carbs my total cholesterol and triglyerides go up. I do take non flush niacin to try and control this but may need to increase the dosage of this, im off the track. Maybe trying to increase antioxidants could lower uric acid levels as know the body doesnt have to try and make its own from uric acid and cholesterol???

    cheers!!!
     
  11. Sallysblooms

    Sallysblooms P.O.T.S. now SO MUCH BETTER!

    Messages:
    1,767
    Likes:
    332
    Southern USA
    Thank you Heaps, but more antioxidents would be hard to do!:D I take many supps. and eat good antioxidents also. Antioxidents are fantastic for SO many reasons so my doctor has me on good ones. I do have a very low C reactive proteing test (the inflammation test if I have it wrong) and that was one of the best my doc has seen! That is very important.

    I appreciate all of the ideas from everyone. These stones really must STOP. OR at least pass.
     
    L'engle likes this.
  12. heapsreal

    heapsreal iherb 10% discount code OPA989,

    Messages:
    7,390
    Likes:
    4,782
    australia (brisbane)
    I know what u mean by supps, i rattle when i walk and dont have much room for food either, lol

    cheers!!!
     
    Sallysblooms likes this.
  13. Sallysblooms

    Sallysblooms P.O.T.S. now SO MUCH BETTER!

    Messages:
    1,767
    Likes:
    332
    Southern USA
    By "hard to do" I meant that I already take them all, ha. I really do take plenty. I do take many supplements and rattle but I sure don't mind! I try to eat the best foods and get the supps too. So important.
     
  14. sianrecovery

    sianrecovery Senior Member

    Messages:
    709
    Likes:
    408
    Manchester UK
    Hi Sally

    I have ME and a genetic kidney disorder called Meduallary Sponge Kidney. This means my kidneys are calcifiying and that I have alot of stones in them. I also have osteoporosis. My mum had both too - so I am hypothesising for me there is a genetic defect around the metabolism of calcium which means its not getting used in the right place for the right functions. I ID on the discomfort and the pain! I also think there may be a link between a) the inflamatory process the stones set up and ME b) biolfim infections around the stones and ME. There is a patient forum for MSK, I havent been on it for a while, but when I do go, people are often posting about symptom that are very reminiscent of ME. However, I'm convinced ME acts as a separate set of dysfunctions, kidney issues apart. I have been treated numerous times for UTI's, but seem to have got on top of that with d mannose, which helps get rid of some the bacteria that love to live in the urinary tract. I assume you drink shed loads of water? xxxx
     
  15. Sallysblooms

    Sallysblooms P.O.T.S. now SO MUCH BETTER!

    Messages:
    1,767
    Likes:
    332
    Southern USA
    Yes, sian, I drink a lot of filtered water, I have a Berkey filter. I do not have MSK.
     
  16. sianrecovery

    sianrecovery Senior Member

    Messages:
    709
    Likes:
    408
    Manchester UK
    ps I also started taking Chanca Piedra a few weeks ago, on the advice of a pharmacist, they call it 'stone breaker' - its a south american herb. I will keep you posted on the results!
     
  17. Sallysblooms

    Sallysblooms P.O.T.S. now SO MUCH BETTER!

    Messages:
    1,767
    Likes:
    332
    Southern USA
    I can ask my integrative doctor about that, thanks.
     
  18. Phil

    Phil

    Messages:
    23
    Likes:
    1
    Altadena, CA
    Hey Sally - do you mean they tested the composition of the stones themselves? That's a very basic part of medical care for kidney stones. So you should know what the main ingredients of those stones are.
    I for instance have many many kidney stones also. Mine are composed primarily of uric acid. I have extreme food sensitivities and live mostly on beef (I have no other choice for the main food to live on). Lots of uric acid there. My urine is also very acidic and I react to potassium citrate (and calcium, magnesium and sodium citrate etc etc) so I cannot alkalize my urine. No I cannot do other foods to balance things for instance there are no vegetables I can eat at present. Double and triple catch-22's. I've ended up in the emergency room a 7-8 times for uncontrolable pain (kept throwing up the pain pills) and once had a 5 day stay when both kidneys got blocked. In other words I too have had my fill of kidney stones.

    Why do you not pass the stones? You mean they don't even try to come out? Or do you mean the pain is so overwhelming you end up with procedures to remove them?

    This may not be of use in your situation but since my last really bad kidney stone attack in April I have been using the Jump and Bump method of helping kidney stones pass.
    It is what finally got the stones to pass after 4-5 days of being in pretty bad shape in the April attack and I've used it 3 times since when stones were on the move and starting to hurt enough to scare me. It worked like magic each time. I'm thinking this is too many times to be coincidence - this technique is really saving the day for me.
    Here's the link: http://www.jumpandbump.com/
    I've passed stones up to 10mm long and 7 mm wide though thankfully most of them are way smaller.

    I'm sorry I don't have a biochemical answer for your problem (or mine).
    I suppose my main thought would be instead of supplements why not change your diet in a major way. I don't know what your diet is like now but whatever it is it is not helping in this regard. Maybe if you are vegetarian you could try Weston Price / Nourishing Traditions or vice versa. Really try a major shift in how you eat and if one approach does not work try another. I would dearly love to make a major change to how I eat but I have no leeway.

    Good luck and if your problem does involve not being able to pass the stones that are trying to come out be sure and give Jump and Bump a try.
    Phil
     
  19. Sallysblooms

    Sallysblooms P.O.T.S. now SO MUCH BETTER!

    Messages:
    1,767
    Likes:
    332
    Southern USA
    Phil, they are calcium, the most common kind. By not passing the stones, I mean, they NEVER leave the kidney, they only get larger. That way, I have to keep having procedures to remove them. So many times to go under anesthesia. I really hate it. Major stuff for POTS. Over and over again. I surprise even my specialists how many I make and most people can pass them.

    I am like you, I cannot take any pain meds. I have tried many. I throw up violently even with a tiny crumb of a pill I can barely see. Or IV, does the same.

    No, I am not vegetarian. I learned the hard way not to do that. I just eat foods that are healthful, normal diet. I do not eat gluten though.

    The jump and bump looks hard for POTS. I have done so much research on this, I am frustrated. I have some suggestions from my integrative MD, but there seems to be limited success with most things you can do, especially for people that make so many and don't pass them.

    I need to be convinced that the Potassium citrate is safe. I talked to my pharmacist and read a lot and got scared. That is really supposed to work great, but too much potassium can do damage that can not be reversed. So scary. I take it most evening, but not the dose the Urologist wants.
     

See more popular forum discussions.

Share This Page