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So what have you got if all the tests come back negative...

9 replies

twentypence · 29/01/2009 21:56

But you still can't get out of bed. But because it's been only 1.5 months (had struggled for a month before that - but I am a music teacher and it was Christmas) and it needs to be 6 months plus for ME.

So what do you have for the time after say 3 weeks when a virus should reasonably been seen off but until 6 months when you are "allowed" to have ME?

I have been tested for everything including a chest xray, blood cultures, Epstein Barr (which I have had - but then I am 36 haven't most people got antibodies at my age) toxoplasmosis iron, thyroid, random glucose, muscle eating viruses etc.

Only thing is white blood cells in urine and raised white count in blood.

I can't see a specialist until the end of next month and that's private. Term starts on Monday.

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twentypence · 29/01/2009 22:16

Shameless bump as I have falled off active convos and have to have another sleep in a minute.

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twentypence · 29/01/2009 22:17

I have falled off

Oh goodness I'm worse than I thought

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morocco · 29/01/2009 22:20

sorry you're feeling so knackered

i had post viral syndrome when i was young - is that the new term for m.e or something different? cos mine was after a virus (duh) but lasted about 6 months, not longer as far as I remember.

Mummyfor3 · 29/01/2009 22:23

You can quite reasonably have a post-viral fatigue that lasts longer than the usual few weeks but not long enough to meet the (arbitrary) criteria for the diagnosis of ME.

It is obviously very good news that your blood tests have come back normal, do take some comfort from that. There is every change you will go back to normal.

Just a different idea: have you felt at all low, lost interest in things you used to enjoy, felt your memory/concentration are failing you, have overeaten/not eating? Any of these and fatigue/excessive sleeping could fit with depression. Ignore this idea if none of this is the case.

Hope you feel better soon (although before Monday is maybe pushing it a bit )

thumbwitch · 29/01/2009 22:30

PVS and CFS are linked to ME but not necessarily the same thing, I believe.

Sounds like you are having a rubbish time, twentypence - could I suggest you take a good multi-vitamin and mineral supplement and also vitamin C. whilst there is no "proof" that they will help you (and no doubt many will come on and tell you I speak rubbish) - vitamin C, zinc and selenium are all required in large amounts for an effective immune system.

If you have a viral infection for any length of time, your immunes system will be using up your stores of zinc and selenium, and preferentially taking any vitamin C you ingest (we don't store it in any capacity so you need a daily intake).

So - feed your immune system what it needs to be more effective - but it's not a good idea to dose up on only zinc and selenium as all minerals are in some kind of balance in the body and taking too much of one can alter the balance, not always in a good way.

Lots of fresh fruit and veg will help too, and stay away from sweet sugary things if you can. And get lots of sleep where possible.

Will your GP not sign you off with post-viral syndrome? you shouldn't try to go to work really, it will only further deplete your resources.

twentypence · 29/01/2009 22:43

Thanks for the messages. I don't think that I am depressed - but feel that I could get depressed if I end up spending any more time in bed. My mind does seem normal at the moment - but as it is the holidays it's a bit difficult to tell!

As I am the cook and shopper in the house getting access to healthy food is becoming more difficult as we run out of things and they get replaced with random stuff my mum buys. I don't have much appetite so my food intake has been balanced between eating healthy food when I am hungry and eating a biscuit when I feel nauseous but can't face real food. I am taking a daily probiotic and a multivitamin on days I think I can keep it down.

I am self employed - so if I don't work I don't get paid but I have organised to go back only to the best paid job and the easiest job for the first couple of weeks of term.

Fibromyalgia sounds the closest to how I feel now on a quick google of symptoms, and that diagnoses recommends exercise. Post viral syndrome recommends rest. So I could be doing completely the wrong thing!

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tiredsville · 30/01/2009 10:56

Reagarding the EBV, most of the population has been exposed to this, but the doctors can test if a recent exposure has occured.

tiredsville · 30/01/2009 10:56

Reagarding the EBV, most of the population has been exposed to this, but the doctors can test if a recent exposure has occured.

twentypence · 30/01/2009 18:43

I had glandular fever when I was 16. Most of my teenage years were spent plagued by viral illnesses. I slept in the afternoon all through uni or went to bed at 6.30pm.

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