Abnormalities in the urine of people with ME/CFS? A clinician asks for feedback

An interested clinician sent me the following observation/question. I will pass along any responses that I find of interest, or perhaps simply direct them to this thread.

I wasn't sure which forum to post this to.

 

If I remember right Chris Armstrong/Neil McGregor measured urine during PEM. According to the University of Melbourne website this is his email. n.mcgregor@unimelb.edu.au

Neil talks about urine in PEM in this presentation around ~6mins. "Dramatic increase in amount of metabolites in urine". I recommend the clinician watch the full presentation, it is very thought provoking.
https://mecfsconference.org.au/videos/neil-mcgregor/

 

Make a poll.

 

I get this it smells methane like

 

I’m not sure about the smell. But when on precipice of a crash I’ve noticed that I need to pee more.

 

Yep, they out something in it so that you know there is a leak. So what do they add?

 

@Tom Kindlon

An observation based on my n=1 research :

After crashes there was a definite change of the colour in my urine. Darker urine was always associated with severity of symptoms/crashes. Lighter urine was always associated with "good days". I tried drinking more water (to make sure i was hydrated) several times but there was no apparent change to the colour.

 

Well I do feel very dehydrated when in PEM, but I don't notice any difference in odour or colour.

 

• Natural Gas and Mercaptan . This additive is called Mercaptan (Methanethiol: CH 3 SH). Mercaptan occurs naturally in marshes, natural gas in some areas, and in some crude oils. Mercaptan is highly flammable and at very high concentrations it is highly toxic and affects the central nervous system.

 

bleach smell anyone?

 

There may be an interesting logic to looking at urine.

The homeostatic systems of the body are designed to keep the composition of blood constant, more or less.

Those homeostatic systems depend on other compartments being very inconstant. So the air you breath out changes in response to burning of glucose to CO2, or the ingestion of acidic material. More than anything, the urine changes in whatever way is needed to keep the blood constant. It changes in terms of water content, pH, sodium content and also waste products like urea, rate and urobilinogen that are produced at different rates.

So during PEM it makes sense not to look at the blood being kept constant but at the fluid that does all the shifting needed to achieve that. I guess the urine is a bit like the stock exchange - an indicator of flux.

Change in the urine during PEM might be very simple. It might be more concentrated or contain more haem breakdown products or more ketones. Some time back I suggested that it might be worth PWME wearing actometers for several months to get a picture of the pattern of activity and the way it differed from normal not so much in quantity as in pattern. Repeated urine testing might show something up in the same way. It might show nothing very interesting but I think there is an argument for considering it.

 

https://en.m.wikipedia.org/wiki/Methanethiol
Maybe I’m smelling mercaptan then as it says it’s produced by the body

 

I don't have a habit of smelling my urine. I just did and it smells lightly of organic things and I think I can distinguish a hint of ammonia too. Not very chemical but organic. It reminds me of sweat.

 

My urine tends to smell of things I've eaten in my last meal - something I don't remember from pre ME/CFS.

 

Yes my pee absolutely stinks when I am bad. Not the same regular urine smell but stronger, but just i dont know, nasty & 'not right'.
I do get very very thirsty when I'm bad & therefore pee a bit more but nothing changes that smell. I not noticed a colour change but I will observe.
FWIW it was one of the first 'odd' things I noticed when I was milder (& in denial that there was anything wrong)... That my pee sometimes smelled very strong & unusual. When I mentioned it to doctor he rolled his eyes at me so I never mentioned it again.

 

LOL neither do I! But when it smells strong you dont have to actively 'smell' it, it wafts up at you out of the bowl. Ugh sorry that's a bit TMI

Mind you i do have a very sensitive sense of smell, always have had since i was a kid. I could smell a bonfire with the windows shut & would alert my mother to get her washing in off the line

 

Yes I've noticed recently my pee stinks mostly in the morning. I've only noticed this recently as I've gotten even sicker. The one thing I noticed from illness onset which has continued is foul smelling sweat. Completely different to pre illness sweat. Really gross.. Toxic!! I've noticed change in odor in other areas but I will go no further. It's nothing something I've looked for, it's just obviously there. Bizarre.

 

For me more frequent urination is a symptom of crashes and it seems to smell more at these times.

I first noted it around the time frequency became an issue, seven or eight years ago, when it seemed to have the asparagus pee smell, even though I had not eaten any. My GP did not seem to consider the smell significant once we had ruled out prostate cancer, so I have not discussed it since.

Subsequently frequent urination is almost invariably linked to PEM, at its worst every 15 minutes, returning to nearer normal in good periods. It seems to smell more at such time, not just the normal diet related variation, though food related variation in general seems more noticeable too (but it is harder to be certain whether this is just the potential ME habit of desperately trying to establish symptom patterns, indeed I wonder if this rational attempt to make sense of our diverse varying symptoms is a factor in some doctors regarding us over focused on our physical symptoms).

Now the smell seems to vary at such times [during crashes], sometimes still the asparagus smell, sometimes fishy (I had wondered about possible infections, but there are no other related symptoms) and sometimes the more chemical odour people describe above.

 

The only time I notice an odour with my urine is when I eat asparagus.