• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

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

Hip

Senior Member
Messages
17,824
A Wave of Ill-Health Due to Coxsackievirus B Spreading from Person to Person

I thought it would be of interest to list the illnesses, serious and mild, that appeared in over 30 friends and family who caught the same virus as me, which blood tests, incubation period and symptoms indicate is likely the enterovirus coxsackievirus B4 (though it may be a nastier than usual strain of CVB4 — a completely new strain of CVB4 was discovered in China, and maybe that is the virus I caught).

In my case, this enterovirus I caught triggered depression, blunted emotions, anhedonia, generalized anxiety disorder, chronic sore throat and periodontitis among other symptoms, and later ME/CFS appeared after I suffered an episode of meningitis and/or encephalitis likely caused by this same virus.

But in the 30+ people who caught my virus during this outbreak, a whole array of symptoms and illnesses manifested soon after they contracted it. In some people, medically diagnosed chronic physical and mental illnesses appeared; and in other cases, chronic subclinical physical and mental symptoms appeared that although not serious, reduced the quality of life, and impaired the mental health and mental normalcy of those individuals.

As I observed all this happening, I was astounded how coxsackievirus B can cause not only overt disease, but also cause lots of permanent subclinical symptoms. We are more aware of the overt illnesses that viruses can cause or are associated with, but there is very little research investigating how such infections can cause permanent subclinical complaints.

The purpose of this thread is to provide some case evidence of how frequently coxsackievirus B can trigger serious illnesses in a small percentage of people, and also cause milder subclinical symptoms in many more individuals.

So here is a list of the overt illnesses and permanent subclinical symptoms that appeared in various friends and family in the first few years of acquiring this Coxsackie B virus (for anonymity reasons, I have named these individuals as Person 01, Person 02, etc):


Illnesses and Subclinical Conditions Appearing in the People Who Caught My Enterovirus

The following illnesses and conditions typically developed usually in first few years of catching my Coxsackie B4 virus (illnesses in bold text were properly medically diagnosed by a doctor; mental health conditions are in purple text):

Person 00 ➤ Myself: I developed depression, substantial generalized anxiety disorder, anhedonia, blunted emotions, and later after an episode of viral meningitis, developed ME/CFS.​
Person 01 Developed Sjögren's syndrome (an autoimmune condition linked to coxsackievirus B4).​
Person 02 Developed sound sensitivity (hyperacusis), and cold hand and feet, and a chronic sore throat. Years later developed mitral valve prolapse, which is linked to CVB​
Person 03 ➤ Developed glaucoma and hypothyroidism after a few years with the virus​
Person 04 ➤ Developed glaucoma after a few years with the virus​
Person 05 ➤ No specific symptoms, but like most others with the virus, developed permanently increased fatigue, and developed a more negative and cynical personality
Person 06 ➤ Developed gluten intolerance that was not present before catching the virus​
Person 07 ➤ Became depressed and negative, suddenly finding it hard to relate to ordinary people, and literally dropped out of mainstream society as a result​
Person 08 Complained of reduced emotions
Person 09 An extremely intelligent scientific and techie person, complained of intellectual atrophy, and his mind going downhill; the precision work he used to do with his hands became clumsy​
Person 10 Experienced a ruptured bowel requiring surgery and was ill with such bowel issues for several years​
Person 11 Previously a bubbly personality, became more stressed at work (lowered stress tolerance), less emotional, less bubbly, less sociable and more fatigued. Dupuytren's contracture
Person 12 An intelligent person with excellent general knowledge, developed mild memory and word recall problems
Person 13 Developed type 1 diabetes, although this occurred over a decade after catching the virus (note that CVB4 as well as CVB1 are linked to triggering T1D)​
Person 14 Developed some anhedonia, finding he no longer enjoyed the practical home DIY tasks he once always loved doing. These task became too much effort, whereas previously he loved to get involved with them​
Person 15 Had a heart attack with myocarditis around 4 years after catching the virus. A few years later developed depression
Person 16 A sociable character and with a strong masculine emotional backbone to his personality, but lost much of his personality strength very soon after contracting the virus, and then became uncharacteristically insular and unsociable
Person 17 Developed hypothyroidism after a few years with the virus, and became more complaining, and more easily irritable after acquiring the virus​
Person 18 Was always a motivated hard worker putting in long hours, but after catching the virus found he did not have enough energy to do his job, so had to change profession to something easier​
Person 19 Needs to sleep with earplugs due to sound sensitivity (hyperacusis)​
Person 20 Died of a respiratory lung infection, possibly caused by the virus, or facilitated by its apparent immunosuppressive effects (but this person was very elderly)​
Person 21 Developed some issues with their ears, which the doctors said was due to catching a nasty virus​
Person 22➤ Experienced generally reduced mental health, and needs to sleep with earplugs due to sound sensitivity. An easy going socializer, became a little uncomfortable socializing with friends
Person 23 Developed recurrent gastritis around eight years after catching this chronic viral infection​
Person 24 Developed significantly reduced emotions after catching the virus (this person said they felt they were become autistic due to the lack of emotions)​
Person 25 Developed chronic generalized anxiety disorder and depression
Person 26 An energetic, thrusting and positive personality, always doing lots, after catching the virus slowly changed into to a negative person, with generally negative views on the world, and now does very little. Became sound sensitive, and sensitive to information overload (eg, finds it mentally unpleasant when two people are speaking at once). Developed cold hands and feet​
Person 27 A very sociable and outgoing person, suddenly complained of parties and social events being a bit unpleasant due to noise and commotion (sound sensitivity)​
Person 28 Healthy as an ox, with no known health problems, had a sudden and fatal heart attack
Person 29 Developed some anhedonia, so losing his interest and excitement in activities (suddenly saying "it does not interest me, I've done it before")​
Person 30 Within months of catching the virus suddenly hit with a heart attack, chronic myocarditis, perforated bowel that required emergency surgery, and chronic depression
Person 31 Had a heart attack soon after catching the virus​
Person 32 Developed glaucoma after a few years with the virus​
Person 33 Developed severe generalized anxiety disorder after catching the virus, and anxiety so bad that this person shut themselves away in their own home, unable to see any visitors due to the extreme mental tension from the anxiety disorder. After a year or two the anxiety improved​
Person 34 On first contracting the virus, had severe body-wide inflammation requiring long term corticosteroids for several months​

The above list details the specific diseases and symptoms that appeared in various individuals. A few people not in this list also caught my virus, and also developed some of the general symptoms that my virus would typically cause (symptoms detailed in the next section).



General Permanent Subclinical Symptoms My Virus Precipitated in Most People

The permanent mostly subclinical effects that my enterovirus seemed to have on most people are the following:

Mildly increased fatigue is common: after catching this enterovirus, previously energetic people would often return home from work, have supper, and then fall asleep exhausted in front of television.​
• Some mild anhedonia hits some people (anhedonia is the loss of interest in things once found enjoyable, due to the brain finding life’s activities less rewarding and pleasurable).​
• Some mild loss of libido is quite common after catching this virus (less interested in sex).​
• A blunted or enfeebled emotional response (known as "blunted affect") is quite common, making relationships and activities less heartfelt.​
Values that previously were important to a person may lose some of their significance and meaning. This might be due to weakened emotions (since values may be to be underpinned by emotion).​
• People may become less inclined to socialize, and become more insular: they may loose some of the enjoyment normally derived from friendship and the company of others, and instead of the warmth of friendship, may experience increased irritability with people, or become more cranky or niggly.​
Decreased ability to cope with stress.​
Sound sensitivity (hyperacusis) may appear after a few years with this virus (this is where the brain finds it harder to cope with certain sounds and noises, which seem to get "under the skin").​
"Tip-of-the-tongue" phenomenon — the inability to retrieve a word or name from memory during conversation (this is known as anomia). These word recall problems are relatively mild, and tend to appear in most individuals with this virus after a few years. It is interesting that anomia is also a symptom of ME/CFS.​
Memory also seems to become poorer in a few people.​
• Mild depression may appear in some people.​
• About two-thirds of people will have permanent constant congested nose / post nasal drip with unusually thick mucus once they catch this virus, and around one-third will have a chronic sore throat. These symptoms may remain for over a decade.​
• Some partial hearing loss may appear in the elderly; in younger people too, hearing becomes noticeably less acute. Some tinnitus may appear.​
• An unusual fine crêpe paper-like skin wrinkling will appear all over the body in more-or-less everyone with this virus who is over 30 years old or so; this symptom manifests more severely in the elderly, but does not seem to manifest in people younger than around 30. Pictures of this skin wrinkling are found on my website.​
Weight gain may appear after a few years with this virus — but mainly only on the abdomen (central obesity).​
• A very sudden onset of periodontitis can occur within the first few months with this virus, even in those with previously excellent oral and dental heath. More brown plaque deposits may also appear on the teeth.​
• People may get cold hands and feet (lack of blood to the peripheries) manifesting after a few years with this virus.​
• A few people get recurrent stomach aches that come back every few weeks or months. This symptom tends to occur more in the early years with the virus, and then disappears later. One infected person developed gastritis years later.​
• Mild but permanent odorless flatulence and bloating is very common. This is definitely a long term symptom: it is still be present in people even 15 years after first catching the virus. Since a main reservoir for enterovirus is the intestines, I think the flatulence may be a result of the chronic presence of enterovirus in the bowels.​

So you can see that the coxsackievirus B4 I caught had a tendency to cause overt illnesses such as sudden heart attacks, chronic myocarditis, type 1 diabetes and in my case myalgic encephalomyelitis (all of which are known to be linked to coxsackievirus B).

Then there was a high incidence of ruptured bowel (gastrointestinal perforation), glaucoma, hypothyroidism, periodontitis, depression and generalized anxiety disorder appearing soon after the 30+ people caught this virus, but these illnesses have not been linked to coxsackievirus B in published studies (so in future researchers might want to examine whether coxsackievirus B is linked to these conditions).

And in addition, this Coxsackie B4 virus also caused many people to develop permanent subclinical conditions such as mild fatigue, reduced emotions, mild anhedonia, a more negative and cynical personality, loss of libido, sound sensitivity (hyperacusis), lowered stress tolerance, intellectual atrophy, mild worsening of memory and "tip-of-the-tongue" word recall problems, circulation problems (cold hands and feet), chronic sore throat and flatulence.


I was astounded not only by the large amount of overt and subclinical illnesses my virus triggered in friends and family, but also equally astounded that the medical profession have generally not been able to track the variety of ill effects that enteroviruses like coxsackievirus B and echovirus produce as they spread in the community.

Although having said that, I think it's quite hard to make the sort of observations I was able to make, unless you are, like me, intimately situated at the epicenter of spread of a virus. And even then it is hard, because normally you would not know who has caught the virus. But with my particular virus, I was able to track its person-to-person spread relatively easily because of its characteristic symptoms such as the unusual fine crêpe paper-like skin wrinkling, or the chronic sore throat / chronic nasal congestion symptoms. Also it's extremely rapid incubation period of 12 hours made it easier to track.



Further Information

My website describing my virus and its symptoms can be found here: https://chronicsorethroat.wordpress.com


On the subject of diseases precipitated by coxsackievirus B spreading through groups of people, the late Dr John Richardson was a GP who studied ME/CFS and coxsackievirus B for nearly 50 years, and was an keen observationist who would often notice how once coxsackievirus B got into a family unit, it would spread from one family member to the next, causing perhaps ME/CFS in one person, a heart attack in the next, myocarditis in a third, pleurodynia in a fourth, and maybe some mysterious health problems in a fifth.

Few GPs these days make such family-wide observations, which is why I think the great number of illnesses that coxsackievirus B can cause is often not properly recognized.

For further information on Richardson's observations on coxsackievirus B in families, see the chapter "Familial Consequences of Viral Illness" in Dr John Richardson's book Enteroviral and Toxin Mediated Myalgic Encephalomyelitis/Chronic Fatigue Syndrome and Other Organ Pathologies.
 
Last edited:

Wonkmonk

Senior Member
Messages
1,006
Location
Germany
Thank you @Hip for collecting this extremely interesting amount of evidence. It's eye-opening, and I think I might give enterovirus a second look as possible cause for my own CFS.

When I read your text, apart from the more serious diseases (heart attack, T1D etc), I thought this is describing myself.

Especially the psychological symptoms...I was always struggling to find the right words to describe what has happened to my personality and mind, and now I have found them:

"A blunted or enfeebled emotional response."

"Values that previously were important to a person may lose some of their significance and meaning."

"People may become less inclined to socialize, and become more insular: they may loose some of the enjoyment normally derived from friendship and the company of others."

"previously energetic people would often return home from work, have supper, and then fall asleep"

"An energetic, thrusting and positive personality, always doing lots, after catching the virus slowly [emphasis added] changed into to a negative person, with generally negative views on the world, and now does very little."

-->That's exacly the change that occurred in me. I did several Big-Five Personality tests and before the CFS, I was in the 96th percentile for "Extraversion". Lots of people were even annoyed, because I was so talkative and speaking all the time, at times a bit hyperactive. I was always seeking the company of other people. At parties or social gatherings, I enjoyed speaking to a lot of people. I often volunteered my opinion without being asked. I was a very positive person and I saw all the positive things in other people. A stranger to me was a friend I haven't met. I trusted most people (which sometimes turned out bad, but im most cases helped build relationships and find mutual benefits). I always offered my help to anyone with almost everything (whether they needed it or not). I had strong, value-based political opinions and I never hesitated to argue with people about them. I know not all of this is desirable and might be putting off some people, but it was my style of personality and it made me successful in my profession and I could relate very well with those people who enjoy the company of the type person I am.

Since catching a virus in 2007 and my CFS started: Nothing like this. I don't seek or enjoy company of people anymore. I don't enjoy conversations anymore. I evade arguments in general and specifically about politics and other more contentious things. I'm happy if I don't have to talk to or be around other people. I don't trust people anymore. I see most people negatively today. I am envious of other people's wealth and achievement. I tend not to volunteer my help anymore because I think people will be ingrateful.

From your website: "I started avoiding social contact more and more, just because I found it a mental strain to be with people." -->That perfectly describes it.

There was such a profound change in personality it's almost frightening, but as in one case you described, it came about very slowly, over the course of 10 years.

"mild anhedonia hits some people (anhedonia is the loss of interest in things once found enjoyable, due to the brain finding life’s activities less rewarding and pleasurable)."

"A blunted or enfeebled emotional response is quite common, making relationships and activities less heartfelt."

-->That's also something for which I was lacking the right word. I can't enjoy things anymore. I can't enjoy many things anymore. "Blunted emotions" is a good description. The smell of flowers, the taste of good food etc. doesn't cause the same positive feelings in me it once did. I am indifferent to a lot of what happens around me

And then there are the little things for which I have no explanation: the congested nose and the periodontitis (despite excellent oral hygiene, which was always very important to me).

And the skin wrinkling: My hand looks almost exactly like yours on the photos of your website.

Weight gain: I had a BMI of ~20 pre CFS, and I sometimes had a hard time eating enough so as to not get underweight. Now my BMI is 28 and I have to think about my diet so it doesn't go up further.

So, it is amazing how well your description checks with my symptoms. Of course not everything is a match, e.g. I never had depression or anxiety.

But most striking is the emotional component that I was lacking a description for and that you described so excellently here. This is also a part that is not usually found in lists of CFS symptoms.

So maybe with my herpes virus treatments, I was barking on the wrong tree. Or maybe some herpes virus strains - if out of control - cause similar symptoms as some enterovirus strains. After all they are both persisting in a whole host of cells, organs and tissues.
 
Last edited:
Messages
61
Can immunology give answers in the near future ...
On the problem of "broken" consciousness as a result of infection (immunology)?

A single life...
 

Hip

Senior Member
Messages
17,824
Especially the psychological symptoms...I was always struggling to find the right words to describe what has happened to my personality and mind, and now I have found them:

It was quite insidious the way my virus would change the psychological make up of people; in some ways observing those personality changes in the people who caught the Coxsackie B4 virus was more disturbing than seeing the overt serious physical illnesses that this virus caused.

We assume that the inner nature of our minds is something inviolable; our minds may be shaped and influenced by our experiences, but we don't expect some invisible insidious agent like a virus to fundamentally and detrimentally change who we are. That was the most shocking and disconcerting observation I made about the effects of my virus.

I know when you get an overt disease like ME/CFS from viral infection, you can expect to get neuropsychological symptoms such as anxiety, depression and blunted emotions (these symptoms are listed in the CCC); but most people who caught my virus did not get any overt disease, yet still developed permanent and detrimental changes to their personality and state of mind.

It makes you concerned for humanity as a whole if infectious pathogens such as coxsackievirus B can permanently distort normal psychological functioning of large numbers of people; yet I expect that most people this happens to will not even be aware that a pathogen they caught a few years ago, which caused a brief gastrointestinal illness for a few days, was the real cause of their personality alterations. That's what makes it so insidious.

In my case, and in the case of some others, the neuropsychological symptoms like depression, anxiety and other psychological came on quickly within months of catching the virus, so I was able to make a link. I was already aware that the virus I caught was unusual, as its first symptom in me was a sore throat that would not go way, and then a month later the virus spread from my mouth to my nasal cavities, lung and intestines. Thus I knew this was not regular cold or flu virus. So when in the second month these horrible neuropsychological symptoms suddenly appeared in full force, I was reasonably sure the virus was the cause. So it my case it was easy to make the link.

But in others, the virus would typically create short gastrointestinal illness (diarrhea and vomiting) for a couple of days, after which they would recover. And then the psychological changes caused by this virus might only appear many months later, and sometimes would only appear very slowly and gradually, over a period of 5 years or more. So very few (if any) people would link those personality changes to a brief gastrointestinal illness they had 5 years earlier.

Indeed, a lot of the people who started to become depressed, negative or cynical as a result of this coxsackievirus B virus would place the blame on society or the world. If you asked them why they had become negative and cynical lately, they would say "it's because the world has become such a bad place" or similar. Yet I know that just few years earlier, that same person had a very optimistic and positive perspective of the same world.



But most striking is the emotional component that I was lacking a description for and that you described so excellently here. This is also a part that is not usually found in lists of CFS symptoms.

It is in the ME/CFS symptoms if you read the Canadian consensus criteria (according to the CCC, in ME/CFS you can have labile emotions, emotional flattening and hypersensitivity to emotional overload).

You might like to read this post which gives a description of anhedonia (loss or reduction of the ability to enjoy pleasurable activities) and blunted affect (reduction in emotional responses).



So maybe with my herpes virus treatments, I was barking on the wrong tree.

Some people when they caught this Coxsackie B4 virus displayed some mild immunosuppression for around the first two years with the virus (people would get bacterial infections that required antibiotics to treat). So it is possible that the apparent immune weakening effect of this enterovirus allows herpesviruses to reactivate. Dr John Chia published a study showing that enterovirus can allow varicella zoster virus to reactivate in the first two months of catching an enterovirus.

If you want to get tested for coxsackievirus B and echovirus, Dr Chia finds that the only reliable blood test for detecting chronic enterovirus infection in ME/CFS is an antibody test by the neutralization method. You can get such tests from ARUP Lab in the US: the coxsackievirus B and echovirus tests cost around $440 each.

Dr Chia says that antibody titers of 1:320 and higher in the ARUP tests are good indicators of chronic active infection in the tissues, Dr Chia found. Ref: 1 In the specific case of coxsackievirus B4, Dr Chia uses titers of 1:640 and higher as the diagnostic threshold for active infection.

In Europe it is very difficult to find an antibody test by the neutralization method (other antibody testing methods such as ELISA, IFA and CFT are not as sensitive and reliable as the neutralization method). However, I do know that the Hellenic Pasteur Institute in Greece provide a coxsackievirus B antibody neutralization test for 68 euros. And IMD Lab in Germany provide individual antibody neutralization tests for CVB3, CVB4 and CVB5. These tests cost €34 each.
 
Last edited:

Hip

Senior Member
Messages
17,824
Confused: are you saying this was recent or the cause of your illness?

My account of the illnesses and ill health precipitated by what I suspect was coxsackievirus B4 as it spread though my social network has nothing much to do with my ME/CFS (although that's the illness the virus happened to trigger in me).

Rather this account indicates what a terrible toll on people's mental and physical health such a virus can cause. It shows how much damage to health enteroviruses may be causing in the general population.
 

junkcrap50

Senior Member
Messages
1,330
How do you know these 30 people got infected with Enterovirus/Coxsackie B Virus or even your strain of Coxsackie? Did they all get lab tests? Did any do the ARUP tests or just normal Quest lab tests? Or did you just assume they got coxsackie because they were in close proximity to you and had these changes?
 

Hip

Senior Member
Messages
17,824
How do you know these 30 people got infected with Enterovirus/Coxsackie B Virus or even your strain of Coxsackie? Did they all get lab tests? Did any do the ARUP tests or just normal Quest lab tests? Or did you just assume they got coxsackie because they were in close proximity to you and had these changes?

As I explained a bit above, the virus I caught produced some distinctive physical symptoms such as the crêpe paper-like skin wrinkling, the chronic sore throat / chronic nasal congestion symptoms that would last for years or indefinitely, and other distinctive symptoms, so it was quite easy to determine who had been infected.

Had this virus not produced such distinctive symptoms, I would not have been able to track it as easily. So in a way, this is a unique opportunity to see the effects of this suspected enterovirus as it slowly passed from one person to another.

Many years after I was infected, I got tested at a lab in Holland which offered a cheap antibody neutralization test (unfortunately the lab has since discontinued this test), and had CVB4 antibody titers of 1:1024, which the lab said was very high. Unfortunately others who caught my virus have not been tested (but probably would not show high titers anyway, as such chronic high titers tend to be found in ME/CFS, but not so much in healthy controls, even if they are infected).

I also had highish titers to cytomegalovirus and herpes simplex 1, but because these have a much longer incubation period than my virus (my virus has a very fast 12 hour incubation period, observed on multiple occasions), we can rule these out as being the virus that I caught. Only viruses that have fast incubation periods in the order of 12 hours are candidates for the virus I caught.

Coxsackievirus B incubation periods are normally stated as the range of 3 to 5 days, which is a little longer than 12 hours, but close enough I think (compared to say cytomegalovirus, whose incubation period is 3 to 12 weeks).
 
Last edited:

junkcrap50

Senior Member
Messages
1,330
Ok. Thanks @Hip. I just wanted to know how you select the 30 since it wasn't mentioned. I assumed it was by observation and deduction, not testing.
 

BadBadBear

Senior Member
Messages
571
Location
Rocky Mountains
Looks like Coxsackie might also be a key player in subacute viral thyroiditis

"Enteroviruses have been suspected. Patients with subacute thyroiditis, who had no clinical evidence of viral disease, demonstrated increases by at least four times in viral antibodies. These viral antibodies included antibodies to mumps virus, but also coxsackie, adenovirus and influenzae. Coxsackie viral antibodies were the most commonly found, and the changes in their titers most closely approximated the course of the disease [24]. In a case report, thyroiditis was attributed to enterovirus: IgM and IgG were found at a quadruple titer against coxsackievirus B4 whereas no other antibodies were found against other coxsackies, echoviruses or mumps [25]"

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2654877/
 

frederic83

Senior Member
Messages
296
Location
France
@Hip Have you noticed an age or gender parameter or patterns from the people around you that probably caught the virus ?

Severity, remission, types of symptoms...
 

Hip

Senior Member
Messages
17,824
@Hip Have you noticed an age or gender parameter or patterns from the people around you that probably caught the virus ?

This virus seemed to infect everybody, young or old, male or female. Person-to-person transmission was slow though: when one family or household member caught the virus, it would take up to a year before that person infected all the other members of the household, by normal social contact. But the virus would invariably infect the whole household eventually.

In terms of who developed which illnesses from the virus, there was a bit of gender divide: all 4 heart attacks and the associated viral myocarditis appeared in males; all 3 cases of glaucoma appeared in females; the 2 cases of hypothyroidism were also in females; for the ruptured bowel, one case was male, the other female.

In terms of the mental symptoms: the 3 cases of generalized anxiety disorder appeared in two males (one of them was me) and one female; the 4 people who were hit hardest with depression were all male (one of them was me).

I was the only person to develop full ME/CFS after catching the virus; but as mentioned, most people with the virus suffered from a permanent but very mild increase in fatigue levels.

And interestingly, nearly everyone who caught my virus displayed the typical ME/CFS word recall problems (when a word or name is on the tip of your tongue, but you cannot bring it to mind).
 
Last edited:

Wonkmonk

Senior Member
Messages
1,006
Location
Germany
"Enteroviruses have been suspected. Patients with subacute thyroiditis, who had no clinical evidence of viral disease, demonstrated increases by at least four times in viral antibodies. These viral antibodies included antibodies to mumps virus, but also coxsackie, adenovirus and influenzae. Coxsackie viral antibodies were the most commonly found, and the changes in their titers most closely approximated the course of the disease [24]. In a case report, thyroiditis was attributed to enterovirus: IgM and IgG were found at a quadruple titer against coxsackievirus B4 whereas no other antibodies were found against other coxsackies, echoviruses or mumps [25]"

Might explain why so many CFS patients have thyroid disease, esp. Hashimoto.
 

Hip

Senior Member
Messages
17,824
Gemcitabine and ribavirin, even in low doses inhibit enterovirus replication synergistically (only CVB3 tested and only tested in vitro, though).

https://www.ncbi.nlm.nih.gov/pubmed/26526589

Did Dr Chia or s.o. else ever try this?

Very interesting finding. I had not come across gemcitabine before.

From what I can work out from the study, gemcitabine would have a very potent in vivo effect against CVB3 replicons (non-cytolytic coxsackievirus B3) — and it's specifically these enterovirus replicons which Dr Chia thinks are the cause of ME/CFS. Some info on the non-cytolytic form of enterovirus (which lives inside human cells) given in this thread.

In my pharmacokinetic spreadsheet, I just now calculated a gemcitabine in vivo Potency Factor = 7268 for CVB3 replicon infections; by comparison, the Valcyte's Potency Factor for EBV = 5416.

It would be very interesting to see if this drug could treat enterovirus-associated ME/CFS. The authors of the study think gemcitabine may have broad-spectrum antiviral effects for many enteroviruses.


The trouble is that as a chemotherapy drug, gemcitabine (which is given once weekly by infusion) has significant side effects:

hair loss (usually minimal, and hair regrows on completion of treatment), nausea and vomiting, nerve toxicity (uncommon), bone marrow suppression (so blood cell counts must be monitored regularly throughout treatment), mucositis (sores/ulcers in the mouth), flu-like symptoms with headache, myalgias, and arthralgias (common for a few days to a week after an infusion). Ref: 1

But given gemcitabine appears to be such a potent antiviral against CVB3 replicons, it's possible that using just a 10th of the normal dose would still have significant antiviral effects, but will minimize or eliminate the side effects.


@JES, @halcyon, @Steve4Andrea, @Never Give Up might be interested in this.



EDIT: I contacted enterovirus researcher Dr John Chia regarding the possible use of gemcitabine as an antiviral, and Dr Chia told me: "The drug is commonly used in ovarian cancer. Unfortunately, we have seen patients who developed CFS after taking this drug for ovarian cancer, and it did not help couple of others CFS patients who developed ovarian cancer and was treated with this drug. The side effect is surprisingly tolerable."
 
Last edited:

Wonkmonk

Senior Member
Messages
1,006
Location
Germany
What would a normal gemcitabine protocol for chemotherapy look like in terms of dose and frequency of administration?
 

Hip

Senior Member
Messages
17,824
What would a normal gemcitabine protocol for chemotherapy look like in terms of dose and frequency of administration?

Gemcitabine is normally given once a week by intravenous infusion (the intracellular half-life of the active metabolites inside the cell is long, so once weekly dosing is fine). Some details here.

The normal chemotherapy dose is 1000 mg per meter-squared of body surface area. A normal weight adult has around 1.7 m2 of surface area, so that corresponds to a weekly dose of 1700 mg.

It is not a very expensive drug: 1 gram of gemcitabine costs $157.