Medullary Sponge Kidney Disease (MSK) Community
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What To do For the Pain

There are several options to try for treating the constant pain, and yes there are several of use who have constant kidney pain even when there is no sign of a stone or infection.
 
There are two articles listed on the board.. One is an e-medicine article about Medullary Sponge kidney, the other one is listed as new procedure for MSK calcifications.  
 
There are several theories for the pain and honestly the pain may have multiple causes. One is that there is pressure that builds up in the tubes.  The article about a procedure by Dr. Wolf is mainly for this type of pain.  The other reason that many of us suffer from chronic pain is a biofilm infection actually sets up within the many calcifications.  Because a biofilm infection does not allow enough of the bacteria to slough off in the urine to showup on typical test for infection, these infections do not always show up on a urine dipstick at the office or a culture. I am working on a research article to better prove this with, lots of documnetation. Also check under the health pages here.. they have done a great job of listing articles I am just not sure if they have my list of them for biofilms but we will work on that.

I have also written and article that is on my website for IC under MSK that explains this theory too.  My website if mainly for IC)Interstitial Cystitis Patients in Missouri and Arkansas.  However I put a link on the site just for MSK to post my research etc. MOARK IC



<font>the treatment options we have found so far, for the chronic pain appear to be as follows.</font>
 
1. Increase your fluids and do not allow you kidney to get empty, since this increase pain,
 
2. decrease your meat intake to about 6oz a day.  the pain level does seem to increase if our kidneys have to process a lot of protein from meat.
 
3.  Ask you physician about trying a long term antibiotics... if you are on antibiotics for a long period of time does the pain go away?
 
    Along that lines many of us have found so relief of help through a natural antibiotics by American Biotech labs, called Silverbiotics. You can google the title and their website will come up.
 
4.  More recently we are learning that Vit D can play a role in increase pain, infection and stones. Ask your doctor to test your vitamin D levels,
it should be treated if it is too high or too low!
 
5. Going for massage for the muscles around the kidney etc. seems to help too, though many of us can not tolerate eve having our kidneys touched. The muscles seem to try to protect the kidney and actually knot up around it.  Going to a good massage therapist they can keep these muscles relaxed, I go to on through my local hospital and they are really really reasonable.
 
6.  Last of all is the procedure by Dr. Wolf.  Though this is not a cure, it is a treatment.  Some patients get relief dramatic relief by the procedure itself.
 
For those of us with chronic biofilm infections, the procedure seems to kinda knock the top layer of calcifications off, allowing the antibiotics to penetrate deeper into the kidney and therefore gives us a remission.  My understanding from Dr. Wolf is that on average this procedure last about 2 years but can be repeated.
 
7. My doctor talked to a physician, who wrote an article in MS Consult entitled the Complicated Urinary Track infection, great article but this physician has had some antidotal success with patients with MSK who have chronic infection.  I can not list the info here, YET since at this point there is no research on whether or not this will work.  We are trying it, I am better but that may be more from having the procedure and my upping my dose of Silverbiotics.
 
I hope this gives you so hope and direction.  More then anything it will give you confirmation that your pain is real and you are not alone.  Taking this into your doctor can help you to get better treatment since truthfully most of them just do not know and it goes against what they are being taught in medical school.   Also the CL of this board has a really neat website she has put together on MSK..., (Nancy) it is also worth checking out and I think it is listed in a thread and if not in the health pages.
 
Hope this encourages you!!
 
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Start Date
Jan 15, 2009
by MSKshelly
Last Revision
Jan 15, 2009
by MSKshelly