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

So could this be the other side of the coin for "something in the blood", instead being "something that would otherwise be in the blood"?

 

I too have bad night sweats during PEM that also smells unpleasant.

This seems to have similarity to unpleasant smelling sweat associated with detoxing and with excluding food that I am intolerant to from my diet, the latter having some parallels to ‘going cold turkey’.

 

My urine began to smell odd around the time of my breathing crisis, which caused a huge downturn in my health. See thread called "My Latest Adventures." It's continued that way. Sort of like asparagus smell, but not the same exactly. It still smells odd.

 

I haven't noticed a significant change in the smell of urine during PEM, but I do experience a day where there is increased need to pee and passing more urine than usual. It has always felt very much a symptom of my ME that comes and goes. Would love to know what the chemical changes in my ME that cause it.

 

@Tom Kindlon
I found McGregors paper that has urine information during PEM
Paper : Post-Exertional Malaise Is Associated with Hypermetabolism, Hypoacetylation and Purine Metabolism Deregulation in ME/CFS Cases
https://www.mdpi.com/2075-4418/9/3/70/htm
Thread : https://www.s4me.info/threads/post-...on-in-me-cfs-cases-2019-mcgregor-et-al.10260/

From the Abstract

From Introduction

From Methods section - not very many metabolites measured. A new study could measure an awful lot more!

Table 2 has the actual results
https://www.mdpi.com/2075-4418/9/3/70/htm#table_body_display_diagnostics-09-00070-t002

Purine Metabolism Changes

Limitations of the study

 

Groups have already completed this finding differences, but they did not account for less activity inducing a lower GFR.

It is dependent on vessel elasticity, and then you will variance in the disposition of amino acids and thus a different smell, so there is an explanation with zero pathophysiological involvement, and it would just be my first one.

 

Like @Sunshine3 and @Peter Trewhitt, I have noted bad smelling sweat. Especially with PEM, and sometimes after foods I don't eat often.

Not sure about odd urine smell.

I have had several tests that show elevated urea. Too tired right now to look up any connection here; other liver and kidney function tests always fine.

 

I have noticed that my urine often has a rotten egg smell (which I notice more because I use a bottle.) Prof De Meirleir once claimed to have developed a test for ME which measured levels of hydrogen sulphide in the urine - what he called a neurotoxic metabolite test (NMT). I know that turned out to be unhelpful but I was interested that my my urine was at the extreme end of the scale on that test.

Another observation I have made is that despite having been on a ketogenic diet for some time I never get the smell of acetone in my urine or on my breath which is supposed to be a feature of ketosis. I know that I am in ketosis because I monitor my bloods and they are consistently between 1.5 and 3.0 mmol/L. At one time when I was ill with something else my blood ketone levels went up to 5.0 mmol/L and my urine ketones were 8-16 mmol/L but still there was no acetone smell. I wonder if this may offer a clue to understanding what might be wrong with my metabolism and that of others diagnosed with ME. Has anyone else on ketogenic diet noticed this? Does anyone have any ideas why it might be?

 

It could be hormonal for some. Since menopause my whole body smells like vinegar.

 

Balsamic? Red or white wine? Fig?

 

@Louie41 let's just say the fruit flies no longer come around

 

@Mij I noticed a change in the smell of urine at menopause but it is more a constant change, unlike the PEM increased urine output that happens every so often. And I never noticed a strong smell with the PEM urine. I had ME twenty years before menopause so for me there is a difference between the PEM and menopause effects.

 

I can't really tell whether there's a change in smell, because it's masked by the BCAAs I take to help me reduce PEM symptoms. (The supplement contains B6, which is well known for making urine smell fishy.)

I need to pee every 20 minutes if I do go into PEM, but I'd assumed it was partly due to faulty temperature regulation. I feel extremely hot, take measures to cool myself down, and then – because I wasn't really hot in the first place – I'm frozen. Most people do urinate more when their bodies are trying to keep warm because they've thrown all the windows open in February . The involuntary muscle tension I get in PEM also comes into play, as it puts pressure on my bladder.

Do other people feel that all-over tension, by the way? It's peculiar to PEM, and I've often wondered about it. By tension I don't mean muscle spasticity, or even the type of whole-muscle tightness that you feel when you're anxious. This feels like tension in the tiniest of the muscle fibres, over which you don't have much voluntary control – I found that it was relieved by gabapentin when I was taking it. It might be due to something as simple as a build-up of lactic acid, though.

 

Found this discussion on Prohealth re body odour. People replying to the Prohealth forum seem to have these same problems:

https://forums.prohealth.com/forums...yone-else-noticed-a-strange-body-odour.75125/

 

I wonder if @strategist ’s suggestion early on in this thread of a poll is worth following up? Not thinking logically at present so not sure what the best questions would be.

When reading through the Prohealth thread that @DokaGirl linked to, I wondered if some of the comments might be explained by hypersensitivity to odours. When relying on self observation would it always be possible to distinguish between actual changes in the odours and changes in an individual’s perception of odour? Certainly my hypersensitivities vary with my ME and I am more likely to be hypersensitive to smells when in PEM.

 

Yes, @Peter Trewhitt , I think it's possible some pwME could be hypersensitive to some smells. However, I do know the body odour one for me was confirmed by another person.

I have looked, and may do so again for any articles about body odour and autonomic dysfunction. Several years ago I was advised by a health care provider that autonomic dysfunction may be causing bad body odour.

ETA: I think a poll is a good idea.

 

Some people can't smell ketones because of their genetics. We were taught at university not to place too much emphasis on smelling ketones as an aid to diagnose diabetic ketoacidosis because of that. The same goes for pear drop type sweets too - some people don't register the smell.

 

I have not noticed different urine smell during PEM, but i will tend to have an overactive bladder and if I crash really bad i am more likely to have symptoms similar to interstitial cystitis. The last time i had a 2 days CPET, this is what happened and it lasted a month.

 

Never noticed a difference with urine.

Around and after onset 5-6 years ago my underarm sweat changed (very sudden strong-smelling bursts) but that seemed to resolved itself after a few months (thankfully, not good for the classroom). I mentioned it to my doctor at the time, he didn't say anything, just made a hand-waving movement.