1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
ME/CFS and the Magic of the Canine Factor
There's been plenty of research indicating that having pets is good for your health. I never really noticed any particular benefits to having cats, though that may have had more to do with my cats. They've been fairly indifferent to my presence and we've shared a live-and-let-live...
Discuss the article on the Forums.

Description of chronic enteroviral infection explains ME?

Discussion in 'General ME/CFS Discussion' started by Countrygirl, Mar 28, 2014.

  1. Countrygirl

    Countrygirl Senior Member

    Messages:
    776
    Likes:
    451
    UK
    I cannot find this posted elsewhere and thought it to be very important. It describes a chronic condition that is caused by Coxsackie B/enteroviral infection, and, of course, mentions Dr Chia. Could this indeed explain many cases of ME, just as was originally believed?

    It is a very long article and I have not pasted all of it so do use the link, please. It is worth reading, I think.

    http://chronicsorethroat.wordpress.com/

    Observation of multiple infectees indicates that this chronic sore throat virus has an unusually rapid incubation period: from the moment in time you first catch this virus (often picked up when kissing an infected person), it takes just 12 hours roughly for the initial sore throat or gastrointestinal symptoms to manifest.

    Once caught, this viral infection does not seem to resolve, but remains as a persistent ongoing infection, and infected individuals seem to remain contagious for a long time (they can be infecting others even years later). It has been observed that this chronic sore throat virus gradually transmits from person-to-person through normal household contact, and once one person in a household contracts this virus, most other household members will catch it from them within a year or so. Several years after I caught this virus, it had slowly spread to more than 30 friends and family, and many of the above listed symptoms manifested to varying degrees in these 30+ people. The more severe symptoms listed above only appeared in around 10% of the infected people, but the majority of people contracting this chronic sore throat virus just manifested much milder symptoms (as described here).

    We will see below that this “chronic sore throat virus” is most probably an enterovirus of some type, such as a coxsackievirus B.

    Here is my account of how I caught this chronic sore throat virus, and how it gradually began infecting my whole body.

    [​IMG]
    Several weeks later, however, I noticed that my sore throat had not cleared up, and instead, the infection started spreading. This was strange, because I was very healthy at that point, HIV negative, with no previous medical problems, usually fighting off colds and infections very quickly. Yet this sore throat would not go away.

    [​IMG]
    Previous to this, my oral health was excellent. Therefore, it seems I developed periodontitis (receding gums) from this virus within a matter of months.

    This gum disease may be a manifestation of the immune-weakening effect this virus creates in the body, allowing bacteria to thrive and colonize the oral region. In addition, gum tissue can be directly attacked by connective tissue-dissolving enzymes created in viral infections (enzymes such as MMP-9).

    [​IMG]
    But in people older than around 50, this virally-induced wrinkling manifested more prominently (and is very distinct from normal aging wrinkles). Searching through known dermatological conditions, the closest fit to my skin’s appearance I could find was a disease called mid-dermal elastolysis.

    heliotrope rash. In addition, new moles with a rough texture may appear on the skin; see this picture that I took of one the moles that appeared. These type of moles are calledatypical moles, or dysplastic nevi.

    1 myocarditis 1 and aseptic meningitis (enteroviruses such as coxsackievirus B cause 85% of all viral meningitis cases). 1

    heliotrope rash and waxy-textured skin on the chest just below the neck.
    Cherry angiomas (tiny dark red pimples on the skin) may appear after a few years.
    New skin moles having a rough texture (called atypical moles, or dysplastic nevi) may appear after a few years.
    Slow healing wounds – small cuts may heal very slowly.

    - HEART AND CIRCULATION SYMPTOMS -
    Myocarditis, pericarditis, and sudden heart attack in the previously healthy.
    Cold hands and feet and sometimes nose (Raynaud’s syndrome) — this common symptom tends to appear a few years after the initial infection.

    - MUSCLE AND JOINT SYMPTOMS -
    Weak legs and hips — the legs and pelvic girdle feel a little weak and slack.
    Muscle cramps, especially in the calf muscles.
    Lower back pain due to cramp in the lumbar region muscles.
    Joint pains — occasional transient joint pains (arthralgias) typically in only one joint.

    - MISCELLANEOUS SYMPTOMS -
    Increased hair loss (alopecia).
    Viral headache lasting for several days (can appear during prodrome).
    Viral meningitis causing non-trivial and permanent changes in mental function.
    Blurred vision.
    Glaucoma may appear after about 5 years with this virus (appears in about 6% of the over 40s with this virus).
    Weight gain often appears in the belly area (abdominal fat).
    Chronic fatigue – a notable loss of energy.
    Unusual sleepiness (hypersomnia) and a tendency to fall asleep more.
    Immunosuppressive — during the first two or three years with this viral infection, other opportunistic infections may arise due to weakened immunity.
    Chronic systemic inflammation (requiring prolonged corticosteroids to control in one severe case).

    Certain individuals who are more severely affected by this virus can experience intense suicidal thoughts (suicidal ideation) every moment of every day, for several years, as if suicide is the only option that makes sense. These constant and harrowing suicidal thoughts are, I guess, a result of the high levels of anhedonia (complete loss of the capacity for joy and pleasure) and mental chaos induced by this virus. However even knowing that this suicidal mind state is caused by the virus does not help mitigate its piercing intensity. And although most people do not necessarily act on their suicidal ideations, the unrelenting presence of these thoughts shows just how profoundly this virus can disturb the normal brain chemistry of some individuals it infects.

    I found that taking SSRI antidepressant drugs (such as citalopram, escitalopram, fluoxetine, paroxetine, sertraline) greatly increases the intensity of these suicidal thoughts, within hours of first taking these drugs; so if you think you may have this virus, be very wary if you try SSRI antidepressants. Conversely, I found the tricyclic antidepressant drug imipramine quite helpful for both my anhedonia and depression; but I found that an even better antidepressant is very low dose low doses of the drug amisulpride. At very low doses, amisulpride acts as an antidepressant (for dysthymia), 1 and very low amisulpride has also been shown useful for treating chronic fatigue syndrome. 1

    None of the 10 or so medical professionals I saw were able to identify this disease or the pathogen causing it, but one infectious disease expert I communicated with, Dr John Chia, said that, based on its symptoms, the pathogen I caught is very likely an enterovirus of some type, such as a coxsackievirus B.

    Certainly this infectious pathogen is likely to be a virus (rather than a bacterium, fungus or protozoan), as three separate bacterial throat swab cultures my doctors conducted (one at a university hospital infectious disease center), showed negative results. Furthermore, stronger evidence that my pathogen is viral comes from its unusually rapid incubation period of around 12 hours; few bacteria can incubate this fast, and the bacterial species than can are easily detectable in a bacterial culture. Thus analysis of the incubation period suggests we are almost certainly dealing with a virus.

    Should any readers have the same symptoms themselves and wish to share their experience and circumstances, please leave a comment. One purpose of this web site is to find people in a similar situation, and to share information and experiences. When posting a comment, you may want to make up an online name for yourself for anonymity purposes. No registration is required to post a comment, but filling out the email address field is a good idea, as when new information or treatments for this virus are found, I will send out details via email.

    Note: there are many causes of chronic sore throat; so your chronic sore throat is unlikely to be caused by this virus, unless you have very similar symptoms. So for anyone with a sore throat for a few days: don’t panic, it is probably not this virus.

    You may wish to go to the Treatments page, to see which supplements and drugs have proven beneficial in treating the symptoms of this virus. If you are suffering from the hellish constant anxiety symptoms that this virus seems to induce in certain people, the anti-anxiety treatments detailed on the Treatments page have proved highly effective in treating these symptoms.

    If you are experiencing persistent fatigue, sensitivity to sounds, and “brain fog” after catching this virus, then you may have developed chronic fatigue syndrome (ME/CFS) as a result of this virus, a condition which is detailed on the ME/CFS Info page.



    ME/CFS Info page.

    1(as well as parvovirus B19 infections, HIV and HTLV-I). Polymyositis and dermatomyositis generally affect the thighs and hips to begin with, but then progress to all the proximal muscles. However, those infected with this virus who developed this mild lower proximal muscle weakness have not had any further disease progression over the years, so if this is polymyositis or dermatomyositis, it is certainly a mild, benign and non-progressing form of this disease.

    Dermatomyositis is characterized not only by proximal muscle weakness, but also by a heliotrope rashon the upper chest area just under the neck, corresponding to the area exposed in a V-neck jumper (the so-called V-sign), a symptom myself and several other people with this virus displayed. Thus along with my muscle weakness, my V-sign heliotrope rash tends to support the idea that the virus described on this website is causing something akin to a mild, benign version dermatomyositis.

    Polymyositis and dermatomyositis are diseases in which T cells attack the muscle tissue; 1 2 in other words, these are autoimmune conditions, precipitated by viral infection.

    ME/CFS Infopage, as one of those may be the culprit in your case.

    We now examine each of the major symptoms produced by my virus, and we find that all these major symptoms strongly match the symptoms known to be produced by enteroviruses.

    Herpangina symptom: strong match. An initial characteristic symptom of my virus is a sore throat looking like herpangina (an inflamed red throat at the back of the soft palette). In my case, the herpangina was without any pain, and without blisters or ulcers, but with a cluster of small papules (raised pimples not producing pus) in the pharynx, these papules being a slightly whiter shade of the red/pink color of the throat itself. The name lymphonodular pharyngitis is given to a herpangina-type sore throat where there are only papules, but no blisters or ulcers; so lymphonodular pharyngitis may be a better description of my sore throat.

    Herpangina sore throats are usually only caused by certain viruses of the Enterovirus genus, namelyenterovirus 71, coxsackievirus A16, and coxsackievirus B species. Lymphonodular pharyngitis is normally caused by coxsackievirus A10 only (but this virus does not produce chronic infections, so we can rule this out). So regarding the herpangina (or lymphonodular pharyngitis) sore throat symptoms, we have strong match between the symptoms produced by my virus, and the symptoms that enteroviruses precipitate. Note that more rarely, herpangina can be caused by echovirus (also from the Enterovirus genus), parechovirus 1, adenovirus, and herpes simplex virus. 1

    Incubation period: possible match. I happen to know exact time I was exposed to this virus; so the fact that its first symptoms appeared 12 hours after this exposure, shows this virus has a very fast incubation period. This rapid 12 hour incubation period was also noted in several other people who were infected by this virus, and an incubation period of 8 hours was actually observed in one individual. This is an extremely fast incubation period, and should be of scientific note just in itself. Using this very valuable incubation period information, we can rule out a whole range of infectious microbial pathogens that have much longer incubation periods. Thus for example, the virus I caught could not possibly be Epstein-Barr virus (EBV), as EBV has an incubation period of 4 to 6 weeks, which considerably longer that the roughly 12 hour incubation period of my virus. Similarly, we can rule out nearly all other viruses and other microbes, as the incubations for most microbes tend to be much longer than 12 hours.

    Figures quoted for coxsackievirus B incubation periods are 3 to 5 days, 1 and echovirus incubation periods are 2 to 14 days. 1 By contrast, the virus that I caught has a more rapid incubation period of around 12 hours (and I have noted my virus incubate in precisely 8 hours in one individual who caught it). So on first analysis, it might seem that the incubation period of my virus is too fast to make it a coxsackievirus B or echovirus. However, there are some enteroviruses which can incubate in 24 hours, such as enterovirus 70. 1 Might the virus described on this website be a newly-emerging recombinant enterovirus, combining the genes of say coxsackievirus B with a more rapidly incubating enterovirus? Research indicates that recombination events are common in the coxsackievirus B group. 1 Such a recombination could help explain why the incubation period of the virus described on this website is so remarkably fast.

    Contagiousness: possible match. My virus is mildly contagious, and is transmitted from person-to-person via normal household or social contact, taking many months to a year before it transmits to everyone in the household. It will generally transmit when there is close contact such as kissing (especially French kissing), or when eating or drinking together (where spittle ejected from an infected person’s mouth may fall on another person’s food). The enteroviruses are generally easily passed from person-to-person via normal household contact, as they are spread by saliva and nasal secretions.

    Organs and areas affected: strong match. Out of the various enteroviruses, a virus in the Coxsackie B group fits my symptoms particularly well, as coxsackievirus B often causes upper respiratory tract infection, gastrointestinal symptoms, significant neurological disease, persistent long-term infection, heart conditions, and systemic spread throughout the body — all of which have be precipitated by my virus. So regarding the organs and areas affected, we have strong match between the my virus, and enteroviruses. There are six serotypes within this coxsackievirus B group; these are coxsackievirus B1, B2, B3, B4, B5 and B6.

    Muscle weakness in pelvic girdle: strong match. The virus described on this website can cause muscle weakness in the pelvic girdle and thighs (the lower proximal muscles). Proximal muscle weakness is the characteristic of the diseases of dermatomyositis and polymyositis, and these two chronic inflammatory myopathy diseases have been linked to group B coxsackieviruses (as well as parvovirus B19 infections, HIV and HTLV-I). Polymyositis and dermatomyositis generally affect the thighs and hips to begin with, but then progress to all the proximal muscles. So these pelvic and thigh muscle weakness symptoms may strongly match the symptoms known to be caused by enteroviruses such as coxsackievirus B.

    Dermatomyositis is characterized by a heliotrope rash, a symptom myself and several other people with this virus display on the upper chest; thus along with my pelvic muscle weakness, my heliotrope rash tends to support the idea that the virus described on this website is causing something akin to a mild, benign version dermatomyositis.

    Hearing loss and increased tinnitus: strong match. Quite a few elderly people (aged 70+) that caught my virus soon (within year or so) experienced sensorineural hearing loss, increased tinnitus, and sometimes even a mild loss of balance or dizzy spells. This little cluster of symptoms is actually a well-known syndrome called Meniere’s disease. Clinical investigation has shown that coxsackievirus B5, influenza B virus and varicella zoster virus are common causes of these type of ear symptoms. 1 I myself noticed a loss in hearing acuity, after catching this virus. Greater age seems to predispose an individual to greater aural damage from this virus. So regarding the hearing loss and increased tinnitus symptoms, we have match between the symptoms produced by my virus and those produced by enteroviruses.

    Chronic fatigue syndrome: strong match. What about the fact I developed chronic fatigue syndrome (ME/CFS) from my virus? The enteroviruses coxsackievirus B and echovirus have been strongly linked to chronic fatigue syndrome, 1 2 3 so the ME/CFS precipitated by my virus is a typical characteristic of enteroviruses.

    Myocarditis, pericarditis and sudden heart attacks: strong match. In terms of the people who manifested myocarditis, pericarditis and sudden heart attacks after catching my virus, it is known that coxsackievirus B is a very common cause of all these conditions. So regarding these cardiological events precipitated by my virus, these strongly match the characteristic diseases caused by enteroviruses such as coxsackievirus B.

    In conclusion: nearly all clinical signs and symptoms of my virus closely match those produced by enteroviruses, strongly suggesting that my virus is an enterovirus of some type. Dr John Chia (a highly regarded infectious disease specialist and expert in enterovirus and chronic fatigue syndrome) has very generously taken the time to read my symptoms listed on this web site, and said my symptoms are consistent with a chronic enterovirus infection.

    Here is a list of enterovirus symptoms.
    Here is a list of diseases associated with enteroviruses.

    here, and the ARUP Lab echovirus antibody test is here.

    The immunohistochemistry enterovirus test is a more sensitive (but unfortunately less specific) way of detecting chronic enterovirus infections. The immunohistochemistry test is more complicated, as it requires a tissue sample that must be collected from a stomach biopsy using an endoscope. The tissue sample is then tested for the presence of enterovirus VP1 protein. Dr John Chia has pioneered this approach for detecting chronic enterovirus infections in ME/CFS patients, and with this technique he has consistently demonstrated the presence enteroviruses in the stomach tissues of ME/CFS patients. This immunohistochemistry test can detect all types of enterovirus, and it is the most sensitive test of all, but it unfortunately does not determine the specific types of enteroviruses you have, whereas the ARUP micro-neutralization does determine the specific types of enterovirus you have.

    Taking a enterovirus CFT test (Complement Fixation Test) for chronic enterovirus infection is NOT appropriate. The enterovirus CFT test is fine for testing acute enterovirus infections (in the first 10 days of infections), but it is of no use whatsoever for chronic enterovirus infections.

    More details on the ARUP micro-neutralization test and the immunohistochemistry test can be found on the Enterovirus Foundation web site.

    Details of possible antiviral treatments for enterovirus infections are given on the Treatments page. Unfortunately, though, enterovirus infections are very hard to treat, as there is a lack of good antiviral drugs for enteroviruses.

    Blog at WordPress.com. | The Ari Theme.
    Powered by WordPress.com
    [​IMG]
    Blue and Radio like this.
  2. Sidereal

    Sidereal Senior Member

    Messages:
    104
    Likes:
    285
    This is @Hip's blog. :thumbsup:
    Hip and merylg like this.
  3. Martial

    Martial Senior Member

    Messages:
    744
    Likes:
    501
    Ventura, CA
    Wow very awesome info! So is something like this curable then? Or is the idea to control symptoms?
  4. Hip

    Hip Senior Member

    Messages:
    2,714
    Likes:
    2,465
    @Countrygirl
    Yes, as @Sidereal says, the above is an extract from my blog.

    My blog describes the various symptoms caused by a virus that myself and many friends and family caught.

    Dr John Chia very kindly read my blog, some years ago when I first published it, and told me that the symptoms I described on the blog are typical enterovirus symptoms.

    I developed ME/CFS from this virus, which is one of the known diseases linked to enterovirus.

    However, I also developed severe generalized anxiety disorder a short time after catching this enterovirus, and I developed horrible anhedonia and emotional flatness too. This anxiety, anhedonia and emotional flatness seemed to appear in most people who caught this virus, although only a few people experienced these mental symptoms to the same severe level as I did. That is that say, most people only manifested mild levels of these mental symptoms — but certainly enough to make them changed characters. It was actually astonishing to see how a virus like this can spread around a group of people, and precipitate permanent changes in the personalities of people.

    I think more scientific research needs to be done on the mental effects of common infectious pathogens on people. It is well established that mental health conditions, such as anxiety disorders and depression spectrum disorders, are linked to common infectious pathogens. However, I observed how subclinical versions of anxiety and depression can be precipitated by such infections, which do not lead to overt and obvious mental health conditions, but manifest as more subtle changes in the characters and behaviors of people.

    I saw how this enterovirus does make subtle — but noticeable — changes to the personality of pretty much everyone who catches it. I detail the nature of these mild personality changes this virus causes here on my website.

    Perhaps the most interesting observation I made on the dozens of people who caught my enterovirus is that many people who caught it developed what you might call "ME/CFS-lite", that is to say, after catching this virus, many people started experiencing very mild version of all the normal ME/CFS symptoms, including: increased fatigue, mild sound or light sensitivities, mild memory problems, mild word recall problems, etc.

    This indicates to me that enteroviruses like the one I caught have a general tendency to precipitate very mild versions of the ME/CFS symptoms in everyone. In other words, these "ME/CFS-lite" symptoms are the normal symptoms that everyone gets from these enterovirus infections.

    However, in certain unfortunate people like myself, these symptoms manifest to a far more severe degree, and this is when someone gets full ME/CFS.


    Note: the interesting thing about the virus I describe on my blog it that it often causes some obvious permanent physical symptoms in most people who catch (symptoms such as the nose constantly producing unusually thick and heavy mucus that has to be regularly cleared; or the strange fine, crêpe paper-like wrinkling of the skin that occurs in people older than around 30 or so who catch this virus). The sudden appearance of these obvious physical symptoms made it easy to spot who had caught this virus in my social circle.
    Last edited: Mar 28, 2014
    Sidereal likes this.
  5. Sinclair

    Sinclair

    Messages:
    56
    Likes:
    18
    I have a question... Can an ME/CFS relapse or crash imply that the enterovirus chronic infection became activated and thus contagious, or that it became contagious even though not activated because the over-activated immune system kept it under control?
    I don't feel flu-like symptoms, ever, but at the begining of a crash, and I am concerned whether at this point I am able to transmit the virus...concerned by mild-fatigue/headaches in the case of my wife and recurrent flu-like symptoms in the case of my toddler...
    Thanks!

See more popular forum discussions.

Share This Page