• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Does ME cause kidney inflammation?

Countrygirl

Senior Member
Messages
5,429
Location
UK
I am asking this as I am in rather a lot of pain with another attack of glomerulonephritis (inflammation of the kidney) and I wondered if there is an association with ME. I have read that it is likely to occur in the immunocompromised and is associated with viruses and autoimmune disease.

I first had signs of it just a few years after the ME onset with years of proteinuria followed long after by heavy haematuria with large blood clots, swollen face and quite severe pain. When a doctor was called, on being told that I had a diagnosis of ME, he told me that it would just be a pulled muscle. :Retro mad: Unfortunately, the 'pulled muscle' continued to cause many days of heavy bleeding and I became very ill. The doctor wouldn't budge. The second diagnosis was a'lazy bladder' as I visibly swelled up in front of him.

One month later, another doctor diagnosed possible kidney cancer and things changed somewhat. After a deluge of scans, consultant appointments and extremely undignified procedures it was decided that I had glomerulonephritis.

I think it is associated with lupus and also AIDS. So, is it just one of my little peculiararities or am I in good company? :Retro smile: I'd be glad to know I'm not alone. And please someone, pass the pain killers :tear:
 

flybro

Senior Member
Messages
706
Location
pluto
Years ago I reggularly got kidney infections. Now I always have blood in my urine, the consultant told me my filters in the kidney are a letting blood thru ometimes, she also said that it would explain the pain I experience, and its called nephritis.
 

Countrygirl

Senior Member
Messages
5,429
Location
UK
flybro;61095]Years ago I reggularly got kidney infections. Now I always have blood in my urine, the consultant told me my filters in the kidney are a letting blood thru ometimes, she also said that it would explain the pain I experience, and its called nephritis.

Thanks for sharing that flybro. I would like to know if we are prone to this problem once we have this lurgy.

(You haven't got any painkillers you could pop down the road with have you? :tear:)
 

xchocoholic

Senior Member
Messages
2,947
Location
Florida
I was wondering about this too. I don't have a swollen kidney but I have a history of kidney stones as of 2007 and I get UTI symptoms (spasms, leaking, frequency mainly) regularly. So far, I've narrowed down my UTI symptoms to when I take a multi B or my Metagenics Multi or if I've eaten too many oxalates ...

I started taking AZO w probiotics and C, not the regular, for the symptoms and it's helping but I'm not sure if taking AZO every day or so is such a good idea. The regular AZO made my bladder burn but I'm not sure why ...

Are you taking probiotics ? Did you know that anyone with kidney stones is known to be missing the bacteria o.forminges ? It's not available over the counter yet but I "almost" remember lol ... that we actually create this one from other available bacteria ... I'm guessing that the bacteria found in the AZO I take helps with this too.

When I get the chance I want to look more closely at how our urinary tracts should function ... One more thing to add to my list ... lol ... tc ... Marcia
 
Messages
83
Location
Texas
I have blood in my urine every day too, and for a while I was having bladder infections that amoxycillin and other antibiotics could not get rid of.

Then my urologist recommended that I add 1/2 to 1 teaspoon of D-Mannose to my drinking water twice a day. It is a tasteless powder made by NOW Foods and can be found in a lot of grocery stores. I have had no infections or pain in my bladder since then. Apparently, there has been confirming research on the D-mannose. It attaches to e-coli and washes it out.

But the blood in my urine remains. And sometimes my urine output drops. In the past my urine output was always higher than normal. I had trouble staying hydrated. I guess this is a progression to a worse phase of ME.

vdt33