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Has anyone had PEM develop into a virus?

beaverfury

beaverfury
Messages
503
Location
West Australia
I have been doing very well lately on my lyme Abx regime. So well that i did 5 hours work in a friend's garden.

Unfortunately i crashed for the next two days and then developed a virus that lasted for a week.
Now two weeks later i still haven't recovered my pre-virus level of health. I feel as poor as i did 12 months ago.
My energy is poor again, my cognition is el crappo and i'm even getting some POTs -like dizziness back..


Does this happens to others? Maybe the timing of my PEM with virus was a fluke?

Would this be a good time to get HSV-1 or HHV-6 antibodies checked to see if these have been activated? (At the same time i got a whitlow infection in my finger which i have heard can develop from HSV-1 or HSV-2).

Could IgG, IgM testing possibly indicate which of these is a factor in my four years of illness?

I'm not keen to hit my body with yet another illness concept and the accompanying poison, but like everyone else i keep searching, searching to beat this plague.
 

ukxmrv

Senior Member
Messages
4,413
Location
London
This is what quite often happens to me. A bout of exercise is followed by viral symptoms, sore throat, glands up all over, sometimes lumps on my neck glands, flu-like all over yuckiness, brain dead, weak, bright red face, then sometimes into tonsillitis or a sinus infection.

Sorry to here that this has happened to you. I've not been able to get any testing done at this stage to pinpoint what is happening.
 

Firestormm

Senior Member
Messages
5,055
Location
Cornwall England
It is hard determining the onset of e.g. flu or a cold or other virus from PEM in my experience. Though there are differences these can easily be missed as can a virus be confused with PEM. Sudden onset of fever and high temperature that dissipates in 24-48 hours might indicate onset of a cold or flu, and snot I would suggest most definitely does, an exit. But I find it very difficult otherwise to distinguish between PEM and something else - and find only time and the lack of further obvious symptoms will determine a trip to the doctors. Of course if the PEM/Virus onset doesn't resolve itself in a PEM-expected span of time: I'll make a trip. Hope you get some resolution shortly :)
 

Mij

Messages
2,353
@beaverfury

this is a good explanation:

Current research by the Dr.’s Light suggests that this unique form of fatigue may actually be brought about by a cytokine or chemokine storm that is trigged by over exertion. This means that body response by creating huge piles of inflammation creating chemicals that damage the body. Eventually within 24 to 48 hours they burn up and the equilibrium is restored. PENE is different from PEM in that PEM is a lack of energy in the short term with no immune component. PENE however will look much more like a flu as well as having a lack of energy and difficulty with neurological function.

http://forums.phoenixrising.me/inde...-fatigue-may-12th-cfs-me-awareness-pene.1164/
 

Hanna

Senior Member
Messages
717
Location
Jerusalem, Israel
I can definitely relate with what you wrote beaverfury. Last week, as I noticed some more energy, I took my brushes and painted one hour long (Monday) ( thing that hasn't happened for more than 6 months). Then, from tuesday I have been struggling with increased neurological symptoms, muscle pain and terrible exhaustion, even using the wheelchair indoors (I usually use it to go out).
 

SOC

Senior Member
Messages
7,849
I thought that is part of the definition of PEM -- flu-like symptoms (among other things) after exercise.

So yes, that has happened to me. Often.
 

Firestormm

Senior Member
Messages
5,055
Location
Cornwall England
I had a flu/cold before Xmas, and picked it up again as I was coming out of the first one. I know this because of the snot, and other clear signs that it was a cold/flu. In my experience I tend to take longer than I used to to recover from any viral infection.

Indeed over my 15 years now with ME, my 3 major relapses have all be provoked by viral infections I seemingly could not 'bounce back' from but had no evident remaining cause. I have just come to accept it as my lot but it can be very hard on a person including me, not knowing if this might be the one that sends me back down the rabbit-hole. But I try not to dwell on it and do the best I can taking due care of activity levels, trying to get some fresh air and gentle exercise, and rest.

Other than that I don't do much else once the doctor has ruled not need to pursue other remedies. I have come to accept it. Of course the hardest part is in getting others to accept it also - and that is an ongoing challenge at the very best of times.
 

beaverfury

beaverfury
Messages
503
Location
West Australia
Thanks for your answers, everyone.

I usually only get mild viral feelings after PEM . This is only the second full-blown flu i have had in 4 years. But as Firestormm mentioned, it takes a long time to recover from these since getting me/cfs. lyme(?).

I wonder to what extent a reactivated EBV, HSV or HHV is involved in this 'flu' ? Going by the virus theory of me/cfs, if each of us has a particular problem with a reactivating virus, wouldn't that same virus keep popping up in times of crashes? And wouldn't this be a good time to get tested to pinpoint the culprit?

Sorry to bring up virus theories again. I know many of you have been over it ad nauseum, but it's an area i am still looking into and learning about.
 

MeSci

ME/CFS since 1995; activity level 6?
Messages
8,231
Location
Cornwall, UK
Thanks for your answers, everyone.

I usually only get mild viral feelings after PEM . This is only the second full-blown flu i have had in 4 years. But as Firestormm mentioned, it takes a long time to recover from these since getting me/cfs. lyme(?).

I wonder to what extent a reactivated EBV, HSV or HHV is involved in this 'flu' ? Going by the virus theory of me/cfs, if each of us has a particular problem with a reactivating virus, wouldn't that same virus keep popping up in times of crashes? And wouldn't this be a good time to get tested to pinpoint the culprit?

Sorry to bring up virus theories again. I know many of you have been over it ad nauseum, but it's an area i am still looking into and learning about.

Also sorry to repeat this, but some people reading may not know: 'virus' is often doctor-speak for "I don't know what it is but 'virus' usually shuts patients up"!
 

Mij

Messages
2,353
I've always wondered if it was the same virus reactivating over again too. There are times I have a viral infection of some sot but don't get PENE after over exertion (or not as intense) and times when the PENE will occur within 2-3hrs after exertion and the PENE will last for days. My conclusion is that I was hit by a different virus. I really don't know.

I've also been tested for various viruses during times I felt terrible and had difficulty standing, sore throat etc, but the test results came back negative. My only positive result was highly elevated anti-thyroid antibodies.
 

beaverfury

beaverfury
Messages
503
Location
West Australia
I don't know enough about this. It could just be a common influenza virus doing the rounds. But it has really done a number on me.

The cytokine pattern would feel the same i guess. I had a bad cough which i don't suppose is any part of the usual symptoms of EBV, HSV or HHV.

Anyway, i have to see my doctor soon so i will read up a bit more and maybe pester him for a test.
Quite sick of the continuing mystery of this BS disease.
 

she

Practically perfect
Messages
12
Location
The Netherlands
well, I am exhausted I get more problem with my herpes (lips blasters).
And I get exausted whenever I over do - so Yes.
 

Mya Symons

Mya Symons
Messages
1,029
Location
Washington
I have been taking many supplements (amino acids, hormone precursors, antiviral herbs, etc.) and the Pall Protocol. To my surprise, I have been able to workout at the gym every other day for 45 minutes. However, on the other day I am not exercising, I always get chills, sore throat and a low grade fever like the start of a flu. It is very frustrating, but seems to be going away faster than usual. The next day I am fine. So far.
 

MeSci

ME/CFS since 1995; activity level 6?
Messages
8,231
Location
Cornwall, UK
I have been taking many supplements (amino acids, hormone precursors, antiviral herbs, etc.) and the Pall Protocol. To my surprise, I have been able to workout at the gym every other day for 45 minutes. However, on the other day I am not exercising, I always get chills, sore throat and a low grade fever like the start of a flu. It is very frustrating, but seems to be going away faster than usual. The next day I am fine. So far.

I sometimes seem to find that if I continue over-exerting myself the PEM is delayed until after I start resting (and it is liable to be worse than if I only over-exerted for a shorter time). So I would guess that it is the exertion causing your symptoms rather than the resting.

The exertion may just mask our symptoms. I don't know what the mechanism would be. It could explain why people thing they are getting better on GET until reality hits with a vengeance.
 

Mya Symons

Mya Symons
Messages
1,029
Location
Washington
I sometimes seem to find that if I continue over-exerting myself the PEM is delayed until after I start resting (and it is liable to be worse than if I only over-exerted for a shorter time). So I would guess that it is the exertion causing your symptoms rather than the resting.

The exertion may just mask our symptoms. I don't know what the mechanism would be. It could explain why people thing they are getting better on GET until reality hits with a vengeance.

Yes, I think you are right. It is the exercising and the recuperation from the exercising that is causing my flu like symptoms. Unfortunately, I don't think that will ever go away.
 

Mya Symons

Mya Symons
Messages
1,029
Location
Washington
What if you stopped exercising? :)
I just started again. Instead of 3 days with PEM, I only have one after exercising for now with the Pall Protocol and other supplements I am taking. So I figure I gotta try and see what happens next. I know it might now end good.:(
 

SOC

Senior Member
Messages
7,849
Thanks for your answers, everyone.

I usually only get mild viral feelings after PEM . This is only the second full-blown flu i have had in 4 years. But as Firestormm mentioned, it takes a long time to recover from these since getting me/cfs. lyme(?).

I wonder to what extent a reactivated EBV, HSV or HHV is involved in this 'flu' ? Going by the virus theory of me/cfs, if each of us has a particular problem with a reactivating virus, wouldn't that same virus keep popping up in times of crashes? And wouldn't this be a good time to get tested to pinpoint the culprit?

Sorry to bring up virus theories again. I know many of you have been over it ad nauseum, but it's an area i am still looking into and learning about.
I suspect it's an immune reaction of some sort. I definitely have multiple reactivating viruses, so I'd guess it's possible that exertion reactivates them somehow. It might also be possible that something else about exertion is causing our immune system to react. Didn't the Lights find in large uptick in some cytokines after exercise?
I just started again. Instead of 3 days with PEM, I only have one after exercising for now with the Pall Protocol and other supplements I am taking. So I figure I gotta try and see what happens next. I know it might now end good.:(
I had some good luck with the Pall Protocol in the beginning. Maybe it's time to try it again now that I have some of the viruses under better control. :)
 

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
I have been doing very well lately on my lyme Abx regime. So well that i did 5 hours work in a friend's garden.

Unfortunately i crashed for the next two days and then developed a virus that lasted for a week.
Now two weeks later i still haven't recovered my pre-virus level of health. I feel as poor as i did 12 months ago.
My energy is poor again, my cognition is el crappo and i'm even getting some POTs -like dizziness back..


Does this happens to others? Maybe the timing of my PEM with virus was a fluke?

Of cause it could be coincidental ..but I get P.E.N.E and as part of that if I overdo it, I get some kind of virus reactivation at times. Its certainly related to overdoing it for me.. runs my immune system down in some way. Last time I had a bout of that, I may of developed a touch of pneumonia out of it (I ended up coughing for 3 weeks and ended up coughing blood. I actualy felt worst then when I was in hospital with double pneumonia for a week).

I havent had many of the tests that others here have so I suspect if I could get more that I'd find out whatever this reactivating virus is and find out what is wrong with my immune system.

For myself Ive learnt that "sore throat" is a big warning to stop whatever Im doing and go straight to bed and stay there till the next day..as it often means Ive done too much.
 

MeSci

ME/CFS since 1995; activity level 6?
Messages
8,231
Location
Cornwall, UK
Exertion increases gut permeability, even in healthy athletes, so it is likely to do so even more with us:

http://jap.physiology.org/content/82/2/571.full

As leaky gut is proposed to allow pathogens/antigens to enter the bloodstream from the gut, which some believe to be the basis for ME by triggering autoimmunity, it can be seen how exertion can both exacerbate ME itself and possibly increase the risk of infection.

Just found this interesting abstract on how exertion affects cortisol levels too. Cortisol is an immunosuppressant, so overexertion may make us feel better in the short term by reducing our autoimmune activity.