Anatomy of an enterovirus / Coxsackie B virus outbreak — overt illnesses and subclinical symptoms

Omar88

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This is very interesting, because as I detailed earlier in this thread, I can very clearly trace the beginning of the infection that very likely triggered my CFS to sharing a drink with a friend. But she did not have any signs of CFS or the type of illness described herein and I also know of no case among my social environment who I might have infected with the virus. No one I know has any long-term issues as described here or as described by the CFS symptoms.

I think that the virus and the CFS are to separate things. The virus might be the trigger, but it might not be what is sustaining the CFS. In my case, I suspect it is HSV-1. Hip also reports high-ish HSV-1 titers, so that might play a role, too.

If I may ask, Omar, did you check your herpesvirus titers (HSV1, HSV-2, VZV, EBV, CMV and HHV6)?
Don't waste your time with those viruses
I am hsv1,2 negative
I have the rest since I was young + I was tested negative IGM for them in the acute phase
 

Wonkmonk

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Don't waste your time with those viruses
I am hsv1,2 negative. I have the rest since I was young + I was tested negative IGM for them in the acute phase
It is an emerging view among CFS specialists that high IgG titers can indicated ongoing chronic infection (possibly non-cytolytic).

But we digress from the topic of the thread again. I assume you are familiar with Hip's roadmap for viral CFS testing.
 
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My son who recently turned 10, has been ill with this since he was eight, and myself for 20 months, at this point. I contracted this during a Coxsackie outbreak at the school were I was teaching. I need help. Only recently have I gotten Drs to acknowledge that I am still ill with this. This post is great. I need to find documented research and professionals who realize the effects this can have. I reside in MA. Any further leads would be greatly appreciated. Thank you
 

Wonkmonk

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It's fascinating how consistent the reports from various people in this thread. This really seems to be a distinct contagious form of CFS, which has so far been seen as a non-contagious disease.

Very sad that I cannot offer help, but @rosierosie, Hip provided some very good starting advice in your other thread. It is very useful to read the roadmap. It includes - as far as I am aware - all common treatment options for suspected virus-triggered CFS. Many patients have improved with those (though none of them works for everyone or can be seen as a cure), including myself with antiviral drugs. It may be worth trying.
 
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It's fascinating how consistent the reports from various people in this thread. This really seems to be a distinct contagious form of CFS, which has so far been seen as a non-contagious disease.

Very sad that I cannot offer help, but @rosierosie, Hip provided some very good starting advice in your other thread. It is very useful to read the roadmap. It includes - as far as I am aware - all common treatment options for suspected virus-triggered CFS. Many patients have improved with those (though none of them works for everyone or can be seen as a cure), including myself with antiviral drugs. It may be worth trying.
Thank you
 
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percyval577

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My gum and my hands look similar to yours (on the webside). Bruises tend to last for years.

You are always doing good work, @Hip .

PS: I personaly don´t think that we would be cured if any known or unknown virus would vanish.
That does not say of course that viruses wouldn´t be a trigger. Obviously they are.
 

Hip

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PS: I personaly don´t think that we would be cured if any known or unknown virus would vanish.
That does not say of course that viruses wouldn´t be a trigger. Obviously they are.
Well it's interesting when you use treatments such as oxymatrine or interferon which can reduce levels of coxsackievirus B, ME/CFS patients' symptoms can greatly improve.
 

percyval577

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It is also and indeed a good question to ask if
the disease is triggered - at least sometimes - by an virus, why shouldn´t
the disease also be sustained - at least sometimes - by a virus.

The trigger event cannot be denied, but the sustaining event logically can, but it needs be fullfilled.


Also, if there is an outbreak,
which other shared property beside the virus should underly the triggering?
(this other property should well be the cause for the sustained disease)

Or one must explain why in non-outbreaks a virus only sometimes triggers the disease.
What for a property should that be, absent in an outbreak.

I see these difficulties.


The strenth of the impact could be an explanation for an outbreak (whatever else the strength would serve).
But this then must be able to connect to a sustaining cause (not the a virus),
and it would not make sense to say this would be this strength.


And it is here not possible to refer to other triggers like bacteria or chemicals,
because this is another case (with potenially the same question).


I see these difficulties. Two arguments:

1.
I don´t know how strong and lasting the improvements you mention are, and how often they occur.
But i can tell from myself so far, that I could have worked again for 15 months if I could have drunken beer when working, ok, thats a help on less than a daily basis.
A longer time frame occured after 9 years post-EBV for almost two years until I relapsed from adressable food.

2.
I felt good when I removed some strange quite thick thing from my tung, not a (known) candida and a small known candida, using eg diet and nystatin.
Thereafter I was bad again as before. Whatever the bad feeling causes, it wants it to be like so.

I feel better when eating onions and sausages (the latter one being antibacterial). But given this detectable influence on a normal amount of microbiome I cannot blame a normal amount of that microbiome (that has been destroyed a bit by onions or sausages) for my illness.
On a further hand I don´t feel worse when EBV might have reactivate (as it feels, it might be wrong of course).



Maybe we are all quite different subgroups and any different disturbance of brain/immune or whatever would feel like the same big category me/cfs.

I would prefer to have a common main cause, and only then we would differ due to history and genetics.

The answere is therefore that there is no strict correlation, and you only can improve, due to possible subgroup or due to the sheer mass of influences. And otherwise there would have been for sure crime happening.
 
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Hi Hips,
I think i have got the same diease as u mention in your website.i have infect by this disease 4 years ago.
Symptom which i have
skin problem
i m 35 years old ,but my skin look like around 45.
skin is dry and wrinkle.
nail problem
many line on nail .
gut and stomach problem
always have air inside ,shit is liquid feeling,cannot eat well.
mental problem
always feel frustrated dont have any passion to do anything,previously i m a very open mind person.
brain fog
every day start from around 15:00 cannot focus on my work
fatigue problem
after 1 week working ,i have to stay on bed whole days for sat and sun
sometime on weekday on afternoon time dont have energy feel exhausted
oral problem
my tongue is really white,and gum become atrophy

And i agree with you this is really a infectious disease.
because i got many relatives and friend,they start to have health problem ,after i got infect.

i think we have to co operate ,try to find out the reason.this disease really have affect a lot of people all over the world.

i had read many of your post,many of your post really help me a lot.

hope to have more discussion with u in the future.

Thanks a lot!
 

Sidny

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Why are there no effective pharmaceutical treatments for coxsackie/enteroviruses? I mean this is a polio family virus right? No one doubted the deadly potential of that i.e. Vaccines

It's sad with so much proof of this viruses role in ME and other illnesses that there isn't even a valtrex equivalent of some sort.

Thanks for making such astute observations and sharing them with us @Hip
 

Hip

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Why are there no effective pharmaceutical treatments for coxsackie/enteroviruses?
Yeah this is a major issue, as chronic enterovirus has been linked to a number of diseases including ME/CFS, chronic myocarditis, dilated cardiomyopathy, chronic myositis, amyotrophic lateral sclerosis and most recently Parkinson's disease, but there is a sore lack of antivirals available to treat it.

Dr John Chia has been speaking to pharmaceutical companies to explain to them the urgent need to develop antiviral drugs. But as we know, it can take up to 15 years from start to finish before a new drug is ready for market.
 
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Yeah this is a major issue, as chronic enterovirus has been linked to a number of diseases including ME/CFS, chronic myocarditis, dilated cardiomyopathy, chronic myositis, amyotrophic lateral sclerosis and most recently Parkinson's disease, but there is a sore lack of antivirals available to treat it.

Dr John Chia has been speaking to pharmaceutical companies to explain to them the urgent need to develop antiviral drugs. But as we know, it can take up to 15 years from start to finish before a new drug is ready for market.
Good thing they're taking their sweet time otherwise Hip wouldn't be here and we all be in trouble :)