Has the virus described on this website been identified?
The virus described on this website may well be coxsackievirus B4, as the following indicates.
Dr John Chia, an infectious disease and enterovirus specialist, kindly read the symptoms detailed on this website, and told me that the virus I caught is likely an enterovirus such as coxsackievirus B or echovirus.
When I took an antibody neutralization test for Coxsackie B viruses in 2016 (some 13 years after catching my virus), I found that I had high titers (1:1024) to coxsackievirus B4 (CVB4). These high titers to CVB4 suggest an ongoing active infection with CVB4.
My blood test also showed I was infected with CVB2 (titers of 1:128) and CVB5 (titers of 1:8). The CVB5 titer is very low, indicating CVB5 is just past, latent infections that is not active. The CVB2 titer is a little higher, but still not as high as my CVB4 titer.
So coxsackievirus B4 may well be the virus described on this website, the virus that triggered all my symptoms, perhaps a more virulent than normal strain of CVB4. There is in fact a new strain of CVB4 circulating in China, called CVB4 genotype V. So one can speculate that perhaps this new genotype V strain is the virus I caught.
Note that in ME/CFS, coxsackievirus B infects large areas of tissue, including the brain, the skeletal muscles, the stomach and intestines (there are nearly 30 studies demonstrating this). Thus with this degree of systemic infection, you often find elevated antibody titers to the culprit virus in ME/CFS. However, in other patients the infection may be more localized (eg, CVB myocarditis patients have the infection in their heart muscles), and so you may not necessarily find such elevated antibody titers in these patients. However, if you have caught this virus, your test result will still be positive, even though your antibody titers may not be that high .
Coxsackievirus B also fits the persistent infection characteristics of the virus I caught: in the last 20 years, it has been discovered that coxsackievirus B is able to form chronic low-level ongoing infections inside human cells. This chronic intracellular form of the virus is known as a non-cytolytic enterovirus infection. Non-cytolytic enterovirus is now known to be the cause of chronic CVB myocarditis, an illness which some people with my virus developed.
Out of the friends and family who caught the same virus, one developed Sjogren’s syndrome (linked to CVB4) 1 and another type 1 diabetes (also linked to CVB4). So this is further suggestive evidence that the virus described on this website is coxsackievirus B4.
Viruses I was tested for: A few years after I caught my virus, during the period 2005 to 2008, I had several pathogen tests, and was tested for: EBV, HHV-6, cytomegalovirus, varicella zoster, herpes simplex 1, herpes simplex 2, parvovirus B19, Toxoplasma gondii, HTLV I & II, HIV, hepatitis B. (I was also tested for coxsackievirus and echovirus antibodies using the insensitive complement fixation test, which usually cannot detect chronic enterovirus infections, so we can ignore these results.)
I was positive only to the pathogens in bold text. All these positive results were past, latent infections, except for cytomegalovirus and HSV-1, which had higher titers and so may be more active. However, cytomegalovirus and HSV-1 could not have been the virus described on this website, because HSV-1 I have had since a child (as I always had occasional herpes cold sores since childhood), and the incubation period for cytomegalovirus is far too long (around 4 to 12 weeks) to match the fast 12 hour incubation period of the virus described on this website.
I observed on multiple occasions that my virus has a very fast incubation period of just 12 hours. In fact 12 hours is faster that coxsackievirus B can normally achieve (CVB incubation period is normally 3 to 5 days; echovirus incubation period is 2 to 7 days), but possibly because this appears to be a more virulent strain of coxsackievirus B, that may make its incubation period faster than normal.
Where can I get tested for this virus?
In the chronic coxsackievirus B and echovirus infections found in chronic fatigue syndrome (ME/CFS), very few viral particles can be found in the blood, so PCR blood tests are not that reliable, as they will often miss chronic active enterovirus infections.
Dr John Chia found that the only blood test sensitive enough to reliably detect chronic active but low-level enterovirus infections is the antibody test by the neutralization method (he found antibody tests by other methods such as ELISA, IFA or CFT are not sensitive enough to reliably detect chronic enterovirus in ME/CFS). Neutralization is the gold standard method for antibody testing. So if the viral infection described on this website is a chronic but low-level ongoing enterovirus infection, antibody tests by neutralization would seem to offer the best chance of detecting it.
Antibody neutralization blood tests for enterovirus are hard to find. ARUP Lab in Utah however provides such neutralization tests. If you suspect you have the virus described on this website, then consider the ARUP Lab micro-neutralization tests for coxsackievirus B1-B6 and echovirus (though these tests are expensive, costing around $440 each).
In ME/CFS patients, antibody titers of 1:320 and higher in the ARUP tests are good indicators of chronic active infection in the tissues, Dr Chia found. In the specific case of coxsackievirus B4, Dr Chia uses titers of 1:640 and higher as the diagnostic threshold for active infection. Dr Chia validated these ARUP Lab tests on hundreds of ME/CFS patients and healthy controls in the way detailed here.
For echovirus, Cambridge Biomedical in the US also offer a neutralization tests which costs around $390. Unfortunately Cambridge Biomedical do not offer a coxsackievirus B test. Dr Chia uses both ARUP Lab and Cambridge Biomedical for his enterovirus testing.
Note that the ARUP and Cambridge Biomedical tests can be ordered through LabCorp and Quest, but you must triple check that LabCorp and Quest actually send it to ARUP, as I have heard several stories of patients ordering these ARUP tests, but LabCorp and Quest ended up doing a different test in house (a test which is not sensitive enough to detect chronic enterovirus), rather than sending the patient’s blood serum sample to ARUP for testing (which is a sensitive test). So if you order through LabCorp and Quest, triple check that they understand your sample must be sent to ARUP. And when you get your results back, check that it says ARUP on the your test results page.
In Europe, the Hellenic Pasteur Institute in Greece provide a coxsackievirus B antibody neutralization test for 68 euros, though this test has not been validated by Dr Chia.
I am not aware of any other labs in the world offering enterovirus antibody testing by the neutralization method, but if you know of one, please let me know (by posting on the Comments Page).
Another option for detecting chronic active enterovirus infections in ME/CFS is Dr Chia’s stomach biopsy test for enterovirus, also called the immunohistochemistry test, or the enterovirus VP1 immunoperoxidase stain.
This stomach biopsy test is a very sensitive way of detecting chronic enterovirus infections. The test requires you to visit a gastroenterologist, who will place an endoscope down your throat to obtain a tissue sample from your stomach. The tissue sample is then sent to Dr Chia’s lab where your tissues are tested for the presence of enterovirus VP1 protein.
Dr John Chia has pioneered this stomach biopsy approach for detecting chronic enterovirus infections in ME/CFS patients, and with this technique he has demonstrated the presence enteroviruses in the stomach tissues of 82% of ME/CFS patients (versus 20% of healthy subjects). This immunohistochemistry test can detect most types of enterovirus, but it unfortunately does not determine the specific types of enteroviruses you have (whereas the antibody neutralization test will determine the specific types). The stomach biopsy test provided by Dr Chia’s lab costs $250 (this excludes the fees of the gastroenterologist).
Note that high antibody titers on the ARUP and Cambridge Biomedical tests are the norm in enterovirus ME/CFS patients, but for those who have been affected by this virus but do not have ME/CFS (for example, those that just got generalized anxiety disorder or depression from the virus), I am not entirely sure if these high titers will show up.
Are there any treatments for this virus?
Assuming this virus is indeed an enterovirus, these viruses are very hard to treat, as there is little in terms of effective antiviral drugs for enterovirus. Studies have shown that a three month course of intravenous interferon therapy (costing $15,000) can fight off an enterovirus infection (in ME/CFS patients), but the virus and its symptoms generally return within 2 to 12 months; this suggests that interferon does not clear all the viruses from the body, and the infection slowly regrows from the small pockets of virus that were left.
Dr John Chia uses the immunomodulator oxymatrine to treat chronic enterovirus infections in ME/CFS, and also the antiviral Epivir, which he finds has mild antiviral effects against enterovirus in ME/CFS. These are certainly worth trying; Dr Chia found that oxymatrine makes major improvements in 25% of patients with enterovirus-associated ME/CFS.
I think I have this virus and its symptoms. What should I say to my doctor?
Mention to your doctor that you think you have caught a persistent viral infection, but you may not want to exclusively focus on the infection.
This is because, assuming this virus is an enterovirus, medicine does not have much in the way of effective antivirals for enterovirus, but often does have means to treat the various symptoms and diseases that may be precipitated by this virus. For example, I developed depression and anxiety as a result of this virus, and these conditions can be treated by antidepressants and anti-anxiety medications.
Note also that other pathogens may cause similar symptoms, so you might want to get tested for pathogens that can cause the type of symptoms you are experiencing.
Are you sure the symptoms described on this website are definitely due to the virus?
The virus described on this website did not just infect me: over 30 friends and family members also contracted it. After each of these individuals contracted this virus, various symptoms described on this website then manifested. Some of these infected individuals live and work in different towns and cities, so we can safely rule out the possibility that a local environmental toxin is responsible for these symptoms.
Why does this virus only cause severe symptoms in relatively few people?
From my observations on over 30 friends and family who caught this virus: around 10% of those who catch it seem to experience either significant mental illnesses (such as a sudden onset of anxiety disorder, depression or anhedonia) and/or significant physical illnesses (including myocarditis, pericarditis, heart attacks, or chronic fatigue syndrome). However, around 90% of those who catch this virus only seem to experience the relatively mild symptoms detailed below. However, it is not unusual for a viruses to cause severe symptoms in one person, but be mild or asymptomatic in another person.
How is this virus transmitted?
The virus passes from person to person via saliva and nasal mucus. Though the contagiousness of this virus is relative low (compared to say influenza viruses and cold viruses, which transmit to others within days), I have observed several times that this virus will eventually transmit to pretty much all members of a household over a period of a few months to a year, once one person living in the household has the virus. The virus is most easily spread via intimate or French kissing. It has also been noted that this virus transmits quite easily to others when people eat together at table, or have drink together (probably from globules of saliva ejected from the mouth of an infected person and landing on another person’s food).
What permanent symptoms does this virus precipitate in most people?
As mentioned, when people catch this virus, around 10% will experience significant mental and/or physical symptoms which can be severe, and around 90% will experience relatively mild symptoms. This 90% who are only mildly affected by this virus will tend to manifest many of the following permanent symptoms:
• Increased fatigue is very common.
• Some mild anhedonia may hit 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 loss of libido is quite common (a loss of interest in and desire for sex).
• Emotional blunting (enfeebled emotional response) is quite common, making relationships and activities less heartfelt. As a result of weaker emotions, people can also lose some of their forbearance or compassion for others, since these qualities tend to rest on one’s emotional backbone.
• Values that previously were important to a person may lose some of their significance and meaning. This might also be due to weakened emotions (since values often tend to be underpinned by emotion).
• People may become less inclined to socialize, and more insular: they may loose some of the enjoyment normally derived from friendship and the company of others, and instead may experience increased irritability with people, or become more cranky or niggly.
• There may be a decreased ability to cope with stress.
• Sound sensitivity may appear after a few years with this virus (this is where the brain finds it harder to cope with certain sounds and noises, such as screeching sounds, which seem to get “under the skin”). Such sensitivity to sounds is called hyperacusis.
• “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 after a few years in most individuals who catch this virus.
• Memory also seems to be compromised in a few people, and there is increased forgetfulness.
• Mild depression may appear in some people.
• Up to around two-thirds of people will have permanent constant congested nose/sinuses/post nasal drip with unusually thick mucus once they catch this virus, and up to around one-third will have a chronic sore throat. The throat usually slowly improves over many years, but may never quite completely disappeared; but the congested nose can remain for over a decade.
• Glaucoma appeared in around 10% of people with this virus after around five years into the infection.
• 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.
• Weight gain may appear after a few years with this virus — but generally only on the abdomen (central obesity).
• A sudden onset of periodontitis often occurs within the first few months with this virus. More brown plaque may also deposit on the teeth.
• Many people 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.
• Mild but permanent odorless flatulence and bloating is very common. This is definitely a long term symptom: it will still be present in people even 10 years after first catching the virus.
So these are the symptoms that are common in virtually everybody who catches this virus. For more info on these symptoms, see my forum thread: anatomy of an enterovirus / Coxsackie B virus outbreak — overt illnesses and subclinical symptoms.
What evidence is there that this is a new strain of virus?
Although the virus described on this website produces many classic enterovirus symptoms, it also causes symptoms that have not been linked to enteroviruses, such as the fine crêpe paper-like skin wrinkling, the anhedonia and anxiety symptoms, and the unusual lymphonodular pharyngitis variant of a herpangina sore throat (up until now, only coxsackievirus A10 was known to cause lymphonodular pharyngitis), suggesting the virus described on this website may be a new strain of enterovirus. Enteroviruses are RNA viruses (in contrast to herpes family viruses like EBV and HHV-6 which are DNA viruses), and RNA viruses are subject to a greater mutation rate than DNA viruses, and thus can more quickly evolve into new viral strains.
Have enteroviruses been previously observed to cause such clusters of illnesses in families?
Yes, the late Dr John Richardson, a GP who studied chronic fatigue syndrome and coxsackievirus B for nearly 50 years, was a keen observationist and would notice how once Coxsackie B virus got into a family unit, it would slowly spread from one family member to the next, causing perhaps chronic fatigue syndrome 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. 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.
Does this virus affect pregnancy?
A couple of women who have this virus have gone through pregnancies without any problems, and have had healthy kids. Though one murine study found that coxsackievirus B can reduce fertility.
How dangerous is this virus?
The horrendous mental state changes such as extreme anxiety disorder and severe anhedonia that this virus precipitates in a few people can lead these individuals to assume that this virus poses a great danger to humanity. It seems undeniable that this virus does cause major and permanent mental state changes and some serious physical medical issues like heart attacks in around 10% of people, but in 90% of people this virus will not cause significant clinical problems. So most people who catch this virus are able to continue in their normal lives and their jobs, albeit with subclinical mental and physical health issues that reduce the quality of life.
For any further questions, please ask them by posting a comment on the comments page.