Medullary Sponge Kidney Disease (MSK) Community
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Avatar universal

MSK - attempt to make a conclusion of treatment etc.

Different members of the group have been very kind and helpful to reply to my diffrent questions. Thank you very much.
I take it that all of you have MSK of the worst type, it means producing kidney stones, having urine infections and cronic pain in the kidneys.
In the following I will try to produce a conclusion from the answers received - to be used in my contact with my urologist.

1)  Many of you undergo operation every 2 or 3 years to remove new kidney stones and calcifications

2) Many of you feel that antibiotics helps to lower your kidney pain - by few of you the pain disappear.
    You use different types of antibiotics (long time/high dose), but those of you who still have some pain left, than go
    on long term low dose antibiotics and seems to prefer Macrobid or Bactrim. Some of you get pain free by doing
3) Because of still having kidney pain, some of you combine long term low dose antibiotics with painkillers, and it
    looks as the majority prefer methadone.

Is this a fair general conclusion? If not, I will appreciate your comments.

Mogens Weihrauch (Denmark)

7 Responses
587521 tn?1238508522
I have been reading your posts and the replies to each one.  And YES, I agree with your general conclusion.

168348 tn?1379360675

The antibiotics for me treat the UTI's I get.  At one point they were going to put me on long-term low level antibiotic therapy cause I kept getting the UTI's.  I am allergic to Macrobid.  Levaquin and Cipro work well for me *usually*

Thanks for taking the time to put this together .... this is what it's all about .. helping each other and finding a cure.

489228 tn?1291535054
Basically but I feel your right but leaving out a few important things.

1.  The surgery we have found to remove calcifications last differently for each person,
Hollie is having it again hoping to get more relief and it has only been 6mos or so.I was told by Dr. Wolf the average time for having to redo the procedure is 2 years which mean for some it last less time others it last more.

2.  The Vit D deficiency is totally left out of your equation and we are learning that it
is an important part in the treatment of the pain, since so far all those who have reported back have been low, most including me very low except one.  Several have
had pain relief from taking Vitamin D.  The research on this actually shows that a  low Vit D level can increase infection and pain, by not only effecting how are body responds but also by effecting the metabolism of medications.  So a low Vit D makes
antibiotics and pain medicine not work as well.

3.  You antibiotics equation is also good, except for me, and who knows there may
be others who develop or come in contact with resistant organisms.  I am on HIGH doses of antibiotics continually and have required IV's,  also there are quite a few who have tried Silverbiotics from American Biotech Labs and find it also helps with the infection levels and pain connected with it.  I personally have to take this in pretty high
doses also or I have visible blood in my urine.

4.  Another area left off is hydration and limiting your protein intake.  In interviewing and speaking with 100's of MSKers many also find that dehydration or high protein intake increases their pain levels.  Staying hydrated and limiting you meat intake mainly to 6oz a day is the first step to try.  I personally can not drink large amounts at one time either or if it painful as well.

5..  Pain meds. I think that your pretty right one there.

I hope that helps you with getting a plan of action together with your doctor.  I am not trying to contradict you only to help you have the most accurate info to take to your doctor.

By the way all of this info and the research to back it is in the paper I have been working on to get published.  I have not been able to do much with it because of the wedding BUT THE WEDDING IS OVER!!! WITH MAJOR DRAMA AND MINOR GLITCHES BUT THEY ARE OFF ON THE HONEYMOON! ( As of tonight her 24 hours
in which she could change her mind are over so I guess my son officially has someone else responsible to take care of him.  Though I feel like a Mac truck hit me,
right now, i am very relieved it is over!!  My husband had encouraged them to elope...
I thought that was awful till we did a wedding, now I am all for encouraging the remaining three to do so, LOL)

Now I can get back to getting this paper finished and published!
Avatar universal
Thank you for your comments.
I just forgot to mentioned Vit D - as you know I myself have a Vit D deficit and take now for 3 month 3000 e.u./day.
Dehydration. Yes, if I drank to little the kidney pain increased. I have now been told by my urologist to drink 3 liters/day - Thats ok.
Protein. I will try to follow your advice and see if it helps.

About long term low antibiotics (Macrobid or Bactrim).
I have seen that some take it for having pain.
Do you know if  s o m e  patients take it preventive (not having current pain)?
By low dose do you know the quantity?

Thank you.

Mogens Weihrauch (Denmark)

592774 tn?1325397342
I do not know about the majority using methadone. It depends on the level of pain the person is experiencing.  
I typically have surgery every 6-9months per kidney when every I have a stone blocking the ureter. Uro cleans out any stones in the kidney that he can reach while he is in there. (Like if you get the mop out to clean a spill, so you decide to just mop the entire floor since you already have the mop in your hands.)
Avatar universal
Re protein.

I take it that you mean protein from meat - that means reduce the comsumpion of meat only? - is that correct?

Kind regards

Mogens (Denmark)
489228 tn?1291535054
Pain level would effect the pain med prescribed, I actually have more then one chronic illness however even the e-medicine article recommend pain management for those
with the chronic pain that is not resolved.

Yes, I am talking about protein levels, in meat.  Meat, and yes, I love meat but if I eat too much at one sitting it causes more pain.  We have heard that the best avg. amount
is about 6oz.

I have not heard of anyone taking antibiotics preventively for pain.  However, it is does often help those with chronic pain.  Dosages vary etc.  It is all going to depend on the type and resistance level of the bacteria in your kidney.  This is also difficult since cultures are all most impossible since the bacteria are within the stones or calcifications in the kidneys.  So the goal is to maintain the pain with the least amount
of antibiotics as you can since over time they will need to be increased!

Hope that helps!

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