Other Kidney Stone Sites We Recommend

The web is majestic and grand, but filled with mixtures of good and bad reporting and advice. Here I have picked out of a simple Google search – kidney stones – some sites I can recommend. For these I try to make clear what I see in them as well as limitations.

kidneystoners.org

The featured site, though not ‘.edu’ is in fact a university level site run by distinguished experts and thoughtful patient advocates. It has a lot of patient content as well as medical materials, and the quality is very high.

Dr Mike Nguyen,  Associate Professor of Clinical Urology at the Keck School of Medicine of USC in Los Angeles, CA, founded this site years ago and it has grown into a wonderful resource for patients. He is a superb stone surgeon and offers patients opportunities to ask questions and also write posts about their own personal experiences.

I am impressed with the level of patient involvement, and the strong orientation to the details of their clinical care.

From a scientific standpoint I think Dr Nguyen’s site is completely reliable, which is critical for patients and family members who want to be sure what they are reading is as true as science can make it.

Take a look at kidneystoners.org.

It is a site I can recommend without reservation: Quality, prominent medical director, university based, scientifically accurate, and very patient friendly.

Urology Care Foundation

A publication of the American Urological Association, this is a rich and accurate site written by experts. There is an ad for urology health magazine but laudably labeled as an adverstiement. One can download articles and one I opened was written by experts I recognize as my peers. Some articles have a decided tilt toward eating lemons, but we can accept that as of as little harm as proven good. No patient posts. I favor Kidneystoners.org for its mix of rigor and bright patient activity, but this site has the same seriousness and reliance on people who really know a lot about the disease.

Mayo Clinic

Reliable, honest, useful. The focus is on essentials. There are ads. The site is oriented to attracting patients. But Mayo is an excellent center for kidney stone care, and in this age no one can afford to be shy. The site has no direct patient presence, by design, but is edited well and has illustrations.

National Institutes of Health 

Reliable, sparse. Just the bare facts, and directions to ask your health care professional. There is no patient presence. No ads.

National Kidney Foundation

The main site is about the same level of detail as Mayo Clinic. It offers 6 related linked articles. The related links are a more detailed but raise some concern. For example only fruits and veggies and less meats are recommended for uric acid stones. That is not a fair statement as potassium alkali produce a more reliable increase of urine pH. Likewise, high protein intake is put forward as a cause of the low urine pH, but in fact other renal factors predominate and are not mentioned. The article on calcium oxalate stones fails to mention idiopathic hypercalciuria, thiazides, or even bone disease as a complication. No ads, but donations are solicited.

PubMed Health

An offshoot of the main repository of medical knowledge, this site attempts to give consumers a sense for contemporary evidence about diseases and their treatments. Unfortunately the site is imprisoned by admirable doctrines that can be carried too far.

If one is totally pure, as an example, even water as a treatment for stones has not been rigorously proven effective – only one randomized trial so far, and one should want many more. So far as diet changes or medications, no trials satisfy rigorous evidence based medicine. Therefore, it could appear that nothing can be done while we await more trials.

I passionately argue that however laudable the philosophy, the result can be a clinical nihilism and futility that satisfies no one. This is especially true for stones whose treatments are inexpensive and with little capacity for harm vs. the massive cost and miseries of all surgery. Even more, given the ideal diet for stone prevention matches the diet recommended for everyone in the US, do we actually need or care to perform another diet trial? No ads.

Harvard Medical School

A lauded institution, this is part of their health publications program and has popped up ads for that product. The six experts listed for the kidney stone article appear to be editors and do not include, as an example, Dr Gary Curhan who is indeed an expert on kidney stones and works at that institution. Though nicely edited the article is very simplified and incomplete compared to the others I have noted. There are patient posts.

Wikipedia

A long article, rather diffuse, and variable in quality. I have no right to criticize as other established experts, myself included, might have put forth some energy to perfect it. I did not. I would advise patients to read the article but not use it in the same way as the ones from established institutions. The latter is more reliable. This one is lavish but not reliable enough for patients to rely on. References abound but their translation into a narrative can be a bit loose. No ads, of course.

University of Michigan

Although under an august banner, this article was produced by a commercial firm called Healthwise. The university carefully makes this fact clear. I read through some links concerning prevention of stones and found rather sparse material. No Ads except for the university itself which is in fact an outstanding institution.

Jill Harris Coaching

Jill Harris is a professional colleague who has written many articles with me or alone on this site. She offers a unique web-based course to aid patients in changing their diets to the Kidney Stone Diet, and maintaining long term adherence. Her site has patient-oriented articles focused on diet. It advertises her diet course and is the only sales outlet for it.  She runs and monitors a closed Facebook page for patients: ‘The kidney stone diet and prevention program’, found on Facebook.

8 Responses to “Other Kidney Stone Sites We Recommend”

  1. kevin volz

    Hi Dr. Coe,

    Fairly new diagnosed stone former. was referred to your site by my nephrologist. we are currently at a point 1 year on meds and post op for stone removal and my 24 hr urine studies are still way out of normal, including making all types of stone forming crystals. We are wondering if your program, or if you know of any other university programs that are working in this micro area we can reach out to, for a another set of eyes on lab results.
    basics are 38y/o male 2 years since 1st stone found, 2 times ESWL, and 1 Ureteroscopy, stone formation seems to be focused in just one of my kidneys.

    any help greatly appreciated

    Reply
    • Fredric L Coe

      Hi Kevin, We certainly see patients here, and not rarely from other cities. If you can travel we can make arrangements to do our best for you. Our secretary is Karen Niswander 773 702 1475. Let us know. Regards, Fred Coe

      Reply
  2. Mike Murphy

    Dr. Coe –

    I am one of the moderators of the Kidney Stones group on Reddit. Our members are kidney stone patients, and share information and support with our fellow kidney stone formers. We would love it if you would post our address on your website, so that people can ask questions in our forum (no medical advice, but plenty of support). If you or Jill Harris would be interested in participating in an “Ask me Anything” session for our members, that’s also something we can consider.

    Thanks for all the information you share.

    Regards,

    Mike Murphy

    Reply
    • Fredric L Coe

      Hi Mike, Of course I am happy to post it. I am not sure of the exact URL so will you please send it by itself. I am sure Jill would be happy to do a session, and I would also. This whole site is about free knowledge to the world about this disease. If you want me to, I can post notices on your site about new articles I put up here. Whatever helps. I would email Jill directly – easy to find. Best, Fred

      Reply
  3. KD Lam

    Thank you so much Dr. Coe. My doc tells me not to read the web as it has too much information that is flat wrong. Perhaps some of his patients are not able to differentiate science based sites from hype trying to sell supplements? Eight of the ones you have listed are my favs – along with uptodate.com, which while it costs money can be very helpful and contains medical info which is not yet part of the AMA’s “protocol.” Thank you again for the simply amazing amount of work you continue to exert to help us. Much appreciated.

    Reply
  4. Karen J KellyThomas

    Thank you, Dr. Coe for this review of websites and your beautiful pristine and precise writing. I found you in 2014 (the year I lost my left kidney to a surprising stone) and have enjoyed your insights and musings these past years. Thanks very much for the energy and passion you commit to patient education.
    Sincerely,
    Karen J KellyThomas PhD, RN, FAAN

    Reply
    • Fredric Coe, MD

      Dear Karen, Thank you for saying all this. I am very happy you find the site useful. Having one kidney does mean that prevention is of the highest concern, and I wish you well with success in it. Warm regards, Fred

      Reply

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