patient.journey
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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
Anatomy of an enterovirus / Coxsackie B virus outbreak — overt illnesses and subclinical symptoms
- Thread starter Hip
- Start date
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.
IThinkImTurningJapanese
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Posts on "Herpesvirus antivirals for ME/CFS linked to HSV-1 and VZV" have been moved to this thread,
Herpesvirus antivirals for ME/CFS linked to HSV-1 and VZV
Herpesvirus antivirals for ME/CFS linked to HSV-1 and VZV
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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
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.
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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Thank you
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percyval577
nucleus caudatus et al
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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.
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
Senior Member
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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
nucleus caudatus et al
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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.
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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- Messages
- 7
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!
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
Senior Member
- Messages
- 176
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
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
Senior Member
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- 18,185
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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- 36
Great post. Thank you! 
aumen hoch:
aumen hoch:
I know this is a pretty old thread but it is an excellent thread. I can relate.
I think I'm fairly lucky @Hip because it seems my ME/CFS is relatively mild (or has been so far) That said, last year was a year of feeling almost continually ill. Sometimes quite horribly so.
But what you describe with the CoxsackieB virus...many, many of those symptoms on your list I can relate to indeed.
In my own case though I am not sure it was CoxsackieB. The incubation period was 48 hours, not 12. I had no sore throat nor fever, nor overt upper respiratory symptoms.
Prior to getting ill (suddenly at 2pm on 27th March 2018) I was -strong and fit for my age (64 then), athletic, healthy, resilient, with a good strong immune system. My character was friendly, quite sociable -(though I did like quiet times of reflection alone, and country walks alone.) Very active, with my brain often running ahead with ideas, things to do, fixing stuff (building a garden bridge, making new fences, ) excited by writing projects, creative generally, had spiritual warmth and positive heartfelt emotions never far from the surface. Great sense of humour always ready for a laugh.
In the first week of illness I went very quiet and "asked" my body (yeah, I know that sounds odd !) -what was the matter with it?
After a few moments I "heard" the answer come back:
"Something has got inside me and is trying to change me"
and
"There are poisons produced as a result"
(Bear in mind I had done NO health research previously. I never needed to -except for animal health research occasionally.)
In the 16 months since, I have experienced many of the things on your list. And the most upsetting "symptom" which was definitely sub-clinical, was a feeling of profound sadness at times -great sadness because of a loss of things I held most dear.
Those things were the enjoyment of my life generally; my simple enjoyment of things had disappeared.
At first I gathered it was because of feeling unwell so frequently, and to be expected. But then I noticed the loss of enjoyment and ability to "feel with" those things I hold dear was actually one of the symptoms at the core of my unwell-ness, and strangely had been since day 1.
i.e. That was one of the initial symptoms that came along with a handful of others at 2pm on 27th March 2017.
I have a very strong heart. Yet I was getting very worrying cardiac symptoms. I have a gut like cast iron -never get gut problems, never go off my food, etc. Yet I was plagued with upset belly.
I never get post-nasal drip or issues with mucus....but I started getting that sometimes on waking in the morning.
I never get headaches.....ever....but got a constant nagging pain on one side of my forehead.
Meanwhile, all medical tests were coming back as "normal".
Yes I started feeling depressed sometimes, and I never got that either before.
Couldn't see the blue sky. Couldn't hear the birds. The wind had no scents in it. Looking at the ground when I walked instead of ahead. Food lost its excitement. Pleasant dreams gone. I started getting nightmares, which I'd rarely had before.
Had to wear earplugs to sleep as the slightest noise would wake me. (I used to sleep through hay-trucks pulled by tractors going by my bedroom 10ft away!)
Stress....became more hard to handle. Even the tiniest little rattle in my car would have me shaky! Filling in a form for the Council....same effect.
Looking at an animal, I could feel no connection. I would be kind to it, etc, but the heart connection wasn't there....and that scared me. That really scared me.
Yet I somehow knew that this was NOT clinical depression. As far as I know, clinical depression does not suddenly start at a particular time on a particular day, with bad flu-like symptoms, a feeling of coming down badly with something, and upset gut. I would have had some warning, had it been that -I am sure.
I couldn't even fight it. Couldn't reach around those symptoms and contact the "real me."
But I kept on attempting to, and trying not to be too upset with nil results.
Sometimes the fog would lift, and life seemed to come back. Those days became very precious.
It isn't hopeless. I would like to say that -at least from my own experience -there have been oases of normality. They do seem to be slightly and gradually increasing as time passes, but I don't wish to tempt Providence, and know that anything can happen.
But it hasn't got worse, so far, and there are now a few more glimmers of light, and quite a bit of my normal "bounce" HAS returned to me, even though I do still go through "crash" periods at times.
I think I'm fairly lucky @Hip because it seems my ME/CFS is relatively mild (or has been so far) That said, last year was a year of feeling almost continually ill. Sometimes quite horribly so.
But what you describe with the CoxsackieB virus...many, many of those symptoms on your list I can relate to indeed.
In my own case though I am not sure it was CoxsackieB. The incubation period was 48 hours, not 12. I had no sore throat nor fever, nor overt upper respiratory symptoms.
Prior to getting ill (suddenly at 2pm on 27th March 2018) I was -strong and fit for my age (64 then), athletic, healthy, resilient, with a good strong immune system. My character was friendly, quite sociable -(though I did like quiet times of reflection alone, and country walks alone.) Very active, with my brain often running ahead with ideas, things to do, fixing stuff (building a garden bridge, making new fences, ) excited by writing projects, creative generally, had spiritual warmth and positive heartfelt emotions never far from the surface. Great sense of humour always ready for a laugh.
In the first week of illness I went very quiet and "asked" my body (yeah, I know that sounds odd !) -what was the matter with it?
After a few moments I "heard" the answer come back:
"Something has got inside me and is trying to change me"
and
"There are poisons produced as a result"
(Bear in mind I had done NO health research previously. I never needed to -except for animal health research occasionally.)
In the 16 months since, I have experienced many of the things on your list. And the most upsetting "symptom" which was definitely sub-clinical, was a feeling of profound sadness at times -great sadness because of a loss of things I held most dear.
Those things were the enjoyment of my life generally; my simple enjoyment of things had disappeared.
At first I gathered it was because of feeling unwell so frequently, and to be expected. But then I noticed the loss of enjoyment and ability to "feel with" those things I hold dear was actually one of the symptoms at the core of my unwell-ness, and strangely had been since day 1.
i.e. That was one of the initial symptoms that came along with a handful of others at 2pm on 27th March 2017.
I have a very strong heart. Yet I was getting very worrying cardiac symptoms. I have a gut like cast iron -never get gut problems, never go off my food, etc. Yet I was plagued with upset belly.
I never get post-nasal drip or issues with mucus....but I started getting that sometimes on waking in the morning.
I never get headaches.....ever....but got a constant nagging pain on one side of my forehead.
Meanwhile, all medical tests were coming back as "normal".
Yes I started feeling depressed sometimes, and I never got that either before.
Couldn't see the blue sky. Couldn't hear the birds. The wind had no scents in it. Looking at the ground when I walked instead of ahead. Food lost its excitement. Pleasant dreams gone. I started getting nightmares, which I'd rarely had before.
Had to wear earplugs to sleep as the slightest noise would wake me. (I used to sleep through hay-trucks pulled by tractors going by my bedroom 10ft away!)
Stress....became more hard to handle. Even the tiniest little rattle in my car would have me shaky! Filling in a form for the Council....same effect.
Looking at an animal, I could feel no connection. I would be kind to it, etc, but the heart connection wasn't there....and that scared me. That really scared me.
Yet I somehow knew that this was NOT clinical depression. As far as I know, clinical depression does not suddenly start at a particular time on a particular day, with bad flu-like symptoms, a feeling of coming down badly with something, and upset gut. I would have had some warning, had it been that -I am sure.
I couldn't even fight it. Couldn't reach around those symptoms and contact the "real me."
But I kept on attempting to, and trying not to be too upset with nil results.
Sometimes the fog would lift, and life seemed to come back. Those days became very precious.
It isn't hopeless. I would like to say that -at least from my own experience -there have been oases of normality. They do seem to be slightly and gradually increasing as time passes, but I don't wish to tempt Providence, and know that anything can happen.
But it hasn't got worse, so far, and there are now a few more glimmers of light, and quite a bit of my normal "bounce" HAS returned to me, even though I do still go through "crash" periods at times.
Hip
Senior Member
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- 18,185
It does sound like you have had a quite a similar experience, in terms of the virus changing the mental state.
I find it upsetting that I was able to observe how my virus clearly caused lots of anxiety and depression in people who caught it, and so I suspect this virus might be playing a role in the wave of anxiety and depression that has hit the UK in the last decade (even in very young children); but unfortunately all the people I wrote to about this virus (like UK and US health authorities like the CDC, various psychiatrists and virologists) paid no attention and showed no interest.
Did you see the Treatments Page of my website, where I list things that I found helpful for the anxiety, depression, etc? Spanish saffron for example works reasonably well for the depression, I found.
The normal incubation period for coxsackievirus B is 3 to 5 days (and for its cousin echovirus is 2 to 14 days). So your incubation period of 48 hours is more-or-less consistent with being either CVB and echovirus.
Most people unfortunately do not know the incubation period of their ME/CFS triggering virus, as it requires you to know when you first contracted it, and also the time the first symptoms appeared.
With my virus, I was able to observe the incubation period not only in myself (as I caught it from kissing on a date in 2003 in London), but also in friends who unfortunately caught it from me. The incubation period was invariably a very fast 12 hours. So that does not quite fit in with the normal coxsackievirus B incubation period of 3 to 5 days; but I think my virus might be a more virulent than normal strain of CVB, and perhaps that's why it was so fast. Certainly my blood test showed very high antibody levels for CVB4.
What is the latest on the Enterovirus front?
We share many, many similar symptoms. I am not sure the Enterovirus explains everything but there are some good indicators that it plays a role in my disease.
Funnily enough I have the same rashes on my chest every day when waking up, my variacella zostee titre were elevated at the severe onset of my disease, I was ill before that tough, these are just 2 examples.
I could also see how Enterovirus reactivation could be a secondary issue.
Do you by any chance suffer from low or borderline low lymphocytes?
Hip
Senior Member
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- 18,185
I got sick in 2014. It started with herpangina in my throat, a body rash, debilitating fatigue, jaundice, etc. Within 6 weeks I had lost about 30% of the fat in my face. I had aged and gotten very skinny in the face without really losing weight.
This thing spread to my whole family (including extended family), friends, coworkers, and people I rode the subway with. It was a very significant outbreak that got no attention.
Two guys I knew in their early 30s died within a few weeks of one another. One dropped dead of a heart attack and the other died in his sleep. Another guy had gall stone issues that ended up destroying his pancreas somehow.
I have been sick for over five years, and have gradually become more and more fatigued. The most prominent symptom is fat loss and aging skin. My face looks 15-20 years too old, and I have the hands of a 70 year old.
One weird thing is my dog got really sick with gallbladder issues and died. I have seen reports of many other people saying that their dog got sick as well.
I had mild relief after a week of taking metronidazole every day and then the symptoms came flooding back worse than before along with a panic attack that lasted days.
Some of this is consistent with Coxsackie virus but some of it is not. Did anyone else's dog get sick?
This thing spread to my whole family (including extended family), friends, coworkers, and people I rode the subway with. It was a very significant outbreak that got no attention.
Two guys I knew in their early 30s died within a few weeks of one another. One dropped dead of a heart attack and the other died in his sleep. Another guy had gall stone issues that ended up destroying his pancreas somehow.
I have been sick for over five years, and have gradually become more and more fatigued. The most prominent symptom is fat loss and aging skin. My face looks 15-20 years too old, and I have the hands of a 70 year old.
One weird thing is my dog got really sick with gallbladder issues and died. I have seen reports of many other people saying that their dog got sick as well.
I had mild relief after a week of taking metronidazole every day and then the symptoms came flooding back worse than before along with a panic attack that lasted days.
Some of this is consistent with Coxsackie virus but some of it is not. Did anyone else's dog get sick?