unrelenting flu feeling

Sushi

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I'd truly like to know how many of you have non stop flu feeling.
Could you give more description of the specific symptoms as flu can have such a wide variety of symptoms? Like: fever? aching? headache? OI? nausea? and so on.
 

Hajnalka

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I'd truly like to know how many of you have non stop flu feeling.
The flu feeling is my main symptom (and also PEM feels fluey for me). I have felt like I have a severe flu for 15 years every day, since December 2002. A severe flu (and a hangover) is how I try to explain my ME to other people.

Does it increase with length of illness?

What do you do to bring it down?
In my personal case it has increased. I don't know what to do to bring it down.
 

ljimbo423

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Hello folks,

I'd truly like to know how many of you have non stop flu feeling.

Does the intensity of it vary throughout the day?

Does it increase with length of illness?

What do you do to bring it down?
I have been able to significantly reduce my flu-like feelings. They are very mild compared to a year ago. I did it through treating dysbiosis, leaky gut and mitochondrial dysfunction.

Those are the only changes I've made in the last year. I also learned, just in the last 2-3 weeks, that high dose coq10 (4-500mg a day) has either stopped or greatly reduced my flu-like flares. They felt just like the flu but were not and would last 4-5 days, often putting me in bed for those days.

I use to feel the flu-like feelings most of the day, to varying degrees. Now I feel them mildly a couple of times a day and they don't last very long.

It seems to me it's the mitochondrial dysfunction that causes my flu-like flares and probably my off and on mild flu-like symptoms now.

That's why the coq10 stopped the flares. I believe it's my gut though, that is causing the mitochondrial dysfunction through immune system activation and oxidative stress.

I feel like I am slowly getting my life back!:):thumbsup:

Jim
 

Sushi

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What about low dose? Maybe you could use other mitochondrial support? Nadh, b-1, acetyl-carnitine, niacinamide, etc?
I do take low dose CoQ10 and do take the other mito support you mentioned (though I no longer take Nadh as I never noticed anything from it). I don't have much in the way of flu-like symptoms except occasionally, so maybe it is having an effect.
 

ljimbo423

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I don't have much in the way of flu-like symptoms except occasionally, so maybe it is having an effect.
That is possible. Last summer I dropped down from 400mg to 100mg coq10 because I didn't feel like it was doing anything.

I just realized in the last few weeks, that's why my flu-like flares started again whenever I would exercise, after I dropped down to 100mg.

I've been walking again lately with no signs of the flu-like flares I was getting, that started after I lowered the dose. So it was preventing flu-like flares and I didn't even know it!
 

Runner5

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I've tried a lot of things, haven't found anything that works for me so I am looking at alternatives to supplements at the moment.
 

edawg81

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I have feelings of flu and feverishness nonstop for the last two years. Only agressive resting slightly helps. Will be trying more antivirals soon.
 
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Hello folks,

I'd truly like to know how many of you have non stop flu feeling.

Does the intensity of it vary throughout the day?

Does it increase with length of illness?

What do you do to bring it down?
Yes, I feel flu-like 42/7. The more I do, the worse I feel. Post exertional malaise. I’ve been in bed for the last 2 days all bc I went out for 2 hours Friday night. I’ve not found anything to stop it except for pacing, but that only minimizes it..
 

Jessie 107

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Yes I always have the flu like feeling, and yes it fluctuates through out the day,
Usually I feel better in the evenings
I have started coq10 200mg but think I am going to double the dose to see if that helps.
I am just about to have a Mitochondrial profile test done with Dr Sarah Myhill,so that will be interesting.
 

blueberry

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I also experience flu-like/viral-type symptoms every few days.This looks like worsening of existing ME symptoms, (glands more swollen, legs hurt more, sore throat, in-bed fatigue) plus sneezing and runny nose. When I get them it can put me in bed for a couple of days. Hard to distinguish at first if my PEM always felt like flu, if the viral-type symptoms were able to surface when I had overdone it, or if it was literally a new virus being caught every few days. Being in the uk and so not able to try pharmaceutical antivirals, I have consulted a medical herbalist to try a combination of broad-spectrum antiviral herbs. As of a few weeks ago he started me on a new variety and as I type, I can state that I have not had viral symptoms now for 11 days. This is a record for me since my relapse just over a year ago. I am also being treated for viral infection by my acupuncturist as of the last few weeks. I decided to focus all my treatments on the viral symptoms for a while, as I felt I couldn't get an accurate picture of what the ME was doing underneath all the fluishness. I now know that I can have PEM without viral symptoms, so it wasn't just a case of PEM "appearing" to be like a virus. Just to confuse matters, I was also on the CoQ10 + grapefruit protocol for a few weeks before I had to stop due to running out of CoQ10 and funds simultaneously! Am back on it now. I know not everyone is interested in complementary treatments for ME, but there's little else to try in the UK, happy to discuss further with folks if they want to message me.
 

perrier

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As if injected with a toxic substance.
Could you give more description of the specific symptoms as flu can have such a wide variety of symptoms? Like: fever? aching? headache? OI? nausea? and so on.
Hi Sushi
It is like feeling one is injected with something, it is systemic. There is also a feeling of fever, yet normal values appear on the thermometer. It is also described as feeling toxic, poisoned.

This sensation never leaves, it is there all the time. Its intensity changes, but not enormously. And now after many years of illness, our dearest family member says that it is unsustainable. And it seems to have increased in intensity. It never goes away this unbearable systemic feeling.
 

perrier

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The flu feeling is my main symptom (and also PEM feels fluey for me). I have felt like I have a severe flu for 15 years every day, since December 2002. A severe flu (and a hangover) is how I try to explain my ME to other people.


In my personal case it has increased. I don't know what to do to bring it down.
Dear Joh,
Genau, genau. This is exactly how our family member describes it. It is there all the time, and has now also increased, and she cannot bear it anymore she says.
 

perrier

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I have been able to significantly reduce my flu-like feelings. They are very mild compared to a year ago. I did it through treating dysbiosis, leaky gut and mitochondrial dysfunction.

Those are the only changes I've made in the last year. I also learned, just in the last 2-3 weeks, that high dose coq10 (4-500mg a day) has either stopped or greatly reduced my flu-like flares. They felt just like the flu but were not and would last 4-5 days, often putting me in bed for those days.

I use to feel the flu-like feelings most of the day, to varying degrees. Now I feel them mildly a couple of times a day and they don't last very long.

It seems to me it's the mitochondrial dysfunction that causes my flu-like flares and probably my off and on mild flu-like symptoms now.

That's why the coq10 stopped the flares. I believe it's my gut though, that is causing the mitochondrial dysfunction through immune system activation and oxidative stress.

I feel like I am slowly getting my life back!:):thumbsup:

Jim
Dear Jim
Thanks for the details. I am so delighted to hear you are getting your life back. But what did you take to treat dysbiosis, and mitochondrial dysfunction? And What brand of coq 10 are you taking?

Our family member has severe gut issues, and any coq we have tried caused intolerable GI pain.