It is high time to take chronic enterovirus infection seriously

ChookityPop

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It is about* time to take chronic enterovirus seriously.

Just found this article from last year. I translated it from Norwegian in Google translate.

"Chronicle: Werner Frøynes, pharmacist, cand.pharm. and pharmacy entrepreneur in convalescence

PATIENTS SUFFERING from myalgic encephalopathy (ME), fibromyalgia, Lyme disease or other tick-borne infections, understand that the health care map does not match the terrain. When an examination in the Norwegian health service does not reveal illness, and even less the cause of this, many patients seek help abroad.

The less resourceful have to deal with their ailments, often with significant loss of quality of life - or at worst loss of life.

LONG TERM ANTIBIOTIC COURSE. I myself have been on a futile journey within the Norwegian health care system. I was, at three-month intervals, referred to constantly new wards at Haukeland University Hospital. I did not receive a significant answer, despite a disabling symptom picture.

The rescue was to leave Norway. At a clinic in Germany, samples were taken where the answers matched the terrain. The tests revealed several bacterial infections, as well as high antibodies to a specific enterovirus. Back in Norway, I experienced that the doctors were most concerned with talking down the German analysis methods.

A long-term course of antibiotics from the clinic in Germany slowly made me better, in line with regular test results from the same place. Eventually, the bacterial infections were defeated, but still the improvement slowed down. The antibodies against the enterovirus were still at a high level. In all probability, the viral infection was a more important part of the disease than we had assumed.

VIRUS UNDERSTANDING. The pandemic with covid-19 has illustrated that medical science has a way to go when it comes to understanding viral infections. Why do some people get sick and die from the coronavirus, while others barely notice that they are infected? Nor is the development of immunity to the coronavirus understood. Medical science seems to have the same challenges when it comes to understanding enterovirus.

Enterovirus is a viral family that causes serious illness. A book written by the English physician John Richardson describes 7,000 patients with chronic infections caused by enteroviruses. Many of these patients underwent a development in which the viral infection started in the gastrointestinal tract, passed into nearby muscles - and from there found its way into the thoracic spine. There, the virus damaged nerves and muscles, often with the result that patients had pronounced dizziness (labyrinthitis) and wing-leafing. It's like reading my story.

CAUSE OF SEVERAL CONDITIONS? The Enterovirus Foundation (EVF) is a foundation in the United States that works to increase knowledge about enterovirus. Their "Board of Directors" includes several professors and researchers in the field. The foundation points to enterovirus as the cause of a number of diseases and conditions.

Some of these associations are recognized in medical science, such as myocarditis, type 1 diabetes, hand-foot and mouth disease, meningitis and severe chest pain.

EVF also points to studies that suggest that enteroviruses may play a role in diseases that medical science does not understand the cause of, such as ME.

Coxsackievirus is a type of enterovirus with affinity for musculature. It is my claim, and experience, that infection of the muscles of the thoracic spine with this type of virus must be an important cause of somatic tinnitus (tinnitus). This is supported in the literature by case studies and other literature.

Tinnitus is a symptom that is not understood, so here there is an obvious need for more research!

DIAGNOSIS - FIRST CHALLENGE. In order to detect enterovirus, PCR technology is used in Norway - virus RNA is detected in blood and faeces, among other things - something EVF claims is only reliable in acute illness. The EVF claims that the use of PCR leads to false negative test results in more than 70 percent of cases where there is in fact a chronic enterovirus infection. EVF therefore recommends instead the use of immunohistochemistry or serology, which the laboratory in Germany has used for me a number of times. In all cases, the levels of my antibodies have been 6-60 times above what EVF claims are signs of chronic infection. This is met with a shrug by my current doctor, a professor at Rikshospitalet. "We believe in PCR," is the answer from there.

The guidelines for diagnostics in Norway are based on the recommendations of the European Non-polio Enterovirus Network (ENPEN). Der heter det: «Furthermore, there is a high prevalence of EV antibodies in the general population from previous exposure and, thus, serologic testing lacks clinical specificity».

Here, ENPEN chooses to ignore all levels of antibodies because antibodies to enterovirus are common in the population. This is contrary to what EVF writes: «The Micro-neutralization test is a very sensitive, specific test and only 11 enteroviruses, coxsackie B1-6 and echoviruses 6, 7, 9, 11, and 30 can be tested using this method. Titers of 1: 160-320 and higher are good indicators of current infection ».

Does chronic enterovirus infection go under the radar because the Norwegian healthcare system follows ENPEN's recommendations for diagnostics?

THINK OUTSIDE THE BOX! For school medicine, it is obviously very difficult to adjust the map. Any change in the paradigm is made on the basis of evidence, often on the basis of large international, randomized, double-blind clinical trials. This is understandable, but it should be remembered that several major advances in medical science have sprung from findings in individual patients.

In our system, it is clear that findings in individual patients do not lead doctors to take new paths and think new thoughts, even if a connection can be made probable. As in my case: both with literature and a lot of validated blood samples from accredited laboratory. Has the requirement for conformity and arrangement in the ranks become too great? I would argue that this lack of commitment and professional curiosity on the part of the doctors is a betrayal of the patients.

My message is that medical science must now take enterovirus seriously. It is likely that this viral family is a major cause of serious, chronic disease in the population. The message from the Enterovirus Foundation must be verified. If it can be established that PCR does not detect chronic enterovirus infection, other methods must replace PCR as a diagnostic tool. Then we can start discussing how to fight chronic disease caused by this destructive virus family."
 

ChookityPop

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"A long-term course of antibiotics from the clinic in Germany slowly made me better, in line with regular test results from the same place. Eventually, the bacterial infections were defeated, but still the improvement slowed down. The antibodies against the enterovirus were still at a high level. In all probability, the viral infection was a more important part of the disease than we had assumed."

So antibiotics is used to treat enteroviruses? I didnt know.
 

JES

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Those German clinics all give antibiotics because they see everything as primarily Lyme disease, I suppose that was the infection that antibiotics helped him with. They do test for other things as well, but often the tests are inaccurate and anyhow, most of the Lyme doctors have the view that viral infections will resolve once you treat Lyme. Then again, there are really no treatments for enteroviruses, so it wouldn't bring them any cash to tell people they suffer from an infection that cannot be treated...
 

ChookityPop

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Those German clinics all give antibiotics because they see everything as primarily Lyme disease, I suppose that was the infection that antibiotics helped him with. They do test for other things as well, but often the tests are inaccurate and anyhow, most of the Lyme doctors have the view that viral infections will resolve once you treat Lyme. Then again, there are really no treatments for enteroviruses, so it wouldn't bring them any cash to tell people they suffer from an infection that cannot be treated...
Copy paste. "It is a dogmatic notion that antibiotics do not work on viruses. This has been thrown out as a truth for many decades. Covid-19 shows, interestingly enough, that medical science does not understand viruses and does not understand the importance of antibodies. So here the medical community has a long way to go."
What do you guys think of this? Covid 19 responded to some antibiotics etc right?
 

Judee

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Here's a page from that enterovirus foundation website about a little girl called Bailey: https://www.enterovirusfoundation.org/survivor-stories/2017/8/27/meet-afton

Breaks my heart to read this story. It also says she had to have Chiari Decompression surgery because she had Chiari malformation.

It also says, "The virus also has made her immune system very weak. She gets sick a lot, is dehydrated very easily and has developed a food aversion." (Food allergies? I mean if something makes you feel sick you eventually stop wanting to eat it.)

That poor child. :(

Thanks, @ChookityPop. You're right...more focus needed on things like this as a possible cause.
 

ChookityPop

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Here's a page from that enterovirus foundation website about a little girl called Bailey: https://www.enterovirusfoundation.org/survivor-stories/2017/8/27/meet-afton

Breaks my heart to read this story. It also says she had to have Chiari Decompression surgery because she had Chiari malformation.

It also says, "The virus also has made her immune system very weak. She gets sick a lot, is dehydrated very easily and has developed a food aversion." (Food allergies? I mean if something makes you feel sick you eventually stop wanting to eat it.)

That poor child. :(

Thanks, @ChookityPop. You're right...more focus needed on things like this as a possible cause.
I havent looked into that site yet, but Im going to.

Poor girl!!

I think thats the case for most chronic sick people like us. Thats the case for me at least. I cant eat certain types of food because they make me feel terrible.

The notion that viruses and bacteria infections cant be chronic is wrong. It is possible to have for example negative borrelia tests and still having lyme. So if thats the case, that means there are lots of viruses and bacteria that can be causing problems even though we have negative igm.
All of this is very interesting and I agree they need to focus more on these things.
 

Pyrrhus

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So antibiotics is used to treat enteroviruses? I didnt know.
I believe the author was saying that, although the antibiotics made him a little better, he was still unwell and his enteroviral antibodies were still high. Therefore, the author felt that the enterovirus was a larger contributor to his symptoms than he originally thought.
 

seamyb

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Covid 19 responded to some antibiotics etc right?
My understanding is that the immune system is so weak fighting viral infections that bacterial infections are rife in severe covid patients. It's in line with the fact that the cells responsible for fighting viruses and those for bacteria are usually high when the others are low.
 

ChookityPop

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My understanding is that the immune system is so weak fighting viral infections that bacterial infections are rife in severe covid patients. It's in line with the fact that the cells responsible for fighting viruses and those for bacteria are usually high when the others are low.
Im sorry Im not a native english speaker. That because the immune system is buisy fighting covid the other bacterias and viruses in the patients bodies are acting up?
Do they suddenly get positive IGM on old bacterial infections? Or higher igg titers?
 

Pyrrhus

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My understanding is that the immune system is so weak fighting viral infections that bacterial infections are rife in severe covid patients. It's in line with the fact that the cells responsible for fighting viruses and those for bacteria are usually high when the others are low.
Im sorry Im not a native english speaker. That because the immune system is buisy fighting covid the other bacterias and viruses in the patients bodies are acting up?
Do they suddenly get positive IGM on old bacterial infections? Or higher igg titers?
I believe what @seamyb was describing was how some immune cells can switch between two states:
  1. an immune cell adapted to fighting intracellular infections, like viruses
  2. an immune cell adapted to fighting extracellular infections, like some bacteria
The most well-known example are T helper cells (Th). A Th cell can either be in the Th1 state, where it is adapted to fighting intracellular infections, or a Th2 state, where it is adapted to fighting extracellular infections.

This topic is a bit more complicated than the above explanation, but I hope it gives an idea of how the immune system can adapt to fight viruses or to fight extracellular bacteria.