Hematuria in MSK patients

[MSKshelly]

I have MSK, and often have blood in my urine.  I used to be full of stones but had a surgery on Aug 4th by dr. Wolf at University Of Michigan to remove them.  OK... I am much much better but notice that I still often have blood in my urine esp after much activity.  Both Dr. Wolf and my URO tell me hematuria is normal with MSK...,
Can someone please explain to me why?

What causes it?  I used think the stones moving in the kidney caused it but I don't have any stones now?

Thanks for taking time to answer!
Shelly

[MSKshelly]

Thank you for these links.  For some reason I never got the message of your response,
so came in here to check!
I will go and search them now.
I help monitor the MSK boad:)!... honestly I have to get well... there are patients across the country as well as some researchers watching my case!  If I fail they get very discouraged, though in truth I think my case is an extreme!

However if like I believe I will, we can over come this thing.... then any MSKer should be able to!

Thanks again for your help!
Shelly

[Dr. Kokil Mathur]

Hi
I am so sorry for your disappointment.
Here are a few links for infectious disease doctors
http://www.id-doctor.com/
List of ID doctors by state: http://www.ucomparehealthcare.com/drs/infectious_disease_physicians/
http://www.suggestadoctor.com/doctors.php?tsehir=&page=6&tuzmanlik=110
http://www.idac.org/
I sincerely hope, you will be able to locate one doctor from this list to help you out. You must have joined MSK help forum, please keep asking on that too.
Please let me know how I can help you in your search. Meanwhile even if you do not post, I’ll keep looking for information for you.

[MSKshelly]

I am disappointed to note that I checked into those links.  They are from the country of Georgia not the state so are over seas!  Phage therapy as I mentioned did not do well in the testing in the US so failed FDA acceptance.  Some have suggested that the reason for this was the lower quality of phages used here. However I am in contact with several researchers in the area of chronic infection.  Several patients with good insurance, (which I have none) along with good incomes, (which I also don't have I am a stay at home mom), have actually gone over there to work through the clinic, set up a protocol that could bring home and use etc.  The feedback so far however has been disappointing!

     For me a round of several natural along with oral antibiotics keeps me going.  I take something called Silverbiotics daily.  I learned that EPA approved a dose of 6 tsp a day in a chronically ill adult. Once upping my dose to that level all the blood left my urine, only to return when I could not maintain that level on two very busy days in a row...,
now again, once up on that level the blood and WBC are completely gone!  It is hard though since I still feel my body is trying to fight this thing off completely but I am not totally over it even after the stones have been removed!

The sad and scary thing is, though my situation is an extreme because of the surgery mishap, there are soo many MSKer's out there like me.  They are living in chronic kidney pain and infection, nausea, blood etc.
Yet we can find NO ONE, who is willing to really help us.  I am one of the few with a awesome wonderful URO who is open and researches with me etc. but he is soo snowed under as the ONLY uro is over 100mile radius, I am not allowed to send patients to him.  He also has searched the country for any physician esp. ID doctor willing to discuss treatment options as well as how to totally kill this now while the stones are gone, without success.  He has told me he would talk to anyone I could find that had enough knowledge of biofilms to really help us!  We have found NO ONE... so if you know of a really good iD doctor, please let me know!

Thanks for your help!
Shelly

[Dr. Kokil Mathur]

Hi Shelly

I am really happy to note that those links have given you a ray of hope. All the best! Do keep me posted about how you are doing. In case there is any other information you require, please let e know. I’ll be happy to help you out.

[MSKshelly]

Thank you soo much for the links.  My doctor and I have been searching the nation for anyone that specializes in this time of infection esp in dealing with the stones.biofilm etc.
and have found NO one.  Even had some of the top doctors (infectious disease) that worked with a intern friend of mine, tell her with the stones they would not touch me because there was NO cure.  Thanks to the procedure by Dr. Wolf at the University of Michigan the stones are thought to be gone... so now we need someone who treats
this type of chronic infection.  I am also famliar with phage therapy but had been told it was not available in the US!  Thanks for taking the time to answer.

Thanks again for your help!
Shelly

[Dr. Kokil Mathur]

Hi Shelly

I am really happy to know that you are feeling better. Yes, pseudomonas infections are sometimes resistant to treatment. I have come across a center in Georgia (U.S.) that deals with treating such resistant infections. Please refer: http://www.phageinternational.com/clinics.htm
And
http://www.phagetherapycenter.com/pii/PatientServlet?command=static_home

There are many centers dealing with this problem. Maybe you will be able to locate one from these links close to your place. And yes, as your doctors say, blood in urine is normal for a MSK patient.

Hope these links are of some help to you. If you need more help, please feel free to contact. I’ll be happy to answer your queries. Please keep me posted.

[MSKshelly]

For the first time in weeks the blood actually appears to have stopped.  I actually have been through many tests etc.  I personally think with me it is connected to the infection.  Even since getting rid of the stones I have felt like I could not get my head above the infection... even after 14 days of IV"s and then continuing on two full strength oral antibiotics.  Finally am using several naturals along with my antibiotics, at my URO"s recommendation that seem to be getting us a head, FINALLY!   I had a bad surgery 13 years ago, was scoped with unsterile instruments, got a very resistant pseudomonas + infection, that we believe set up a biofilm infection in my stones.  That is why we were soo excited to find the surgery to remove the stones!!  I see my URO often and he has done about every test out there.

I do not need see the blood all the time and like I said feel it is connected to the infection but both the surgeon and my URO keep telling me that it could be but blood is NORMAL for MSK patients which I did not under stand!  Thanks for the explanation!  It makes more sense to me... though for me I still think it is a sign of infection!

Shelly

[Dr. Kokil Mathur]

Hi Shelly
How are you now?
Hematuria is a complication of Medullary Sponge Kidney and apart from stones, hematuria of glomerular origin may be the result of a structural disruption or break in the continuity of the glomerular basement membrane caused by inflammatory or immunologic processes. It could also be due to infection.
However please consult your urologist and rule out other causes of hematuria visible to naked eye like injury to urinary bladder, tumors or polyps in urinary tract etc.

Hope this helps. If you need more help, please feel free to contact. I’ll be happy to answer your queries. Please keep me posted.