CVB6 Treatment

[Springbok1988]

Hello everyone,

I am wondering if anyone knows of any treatments for coxsackievirus B6. I tested positive for it with the *winces* Quest diagnostics test. I requested that the test be done through ARUP but my local Quest lab says they are unable to forward the test to them. That being said, I did test positive for it so a more sensitive test, like the one at ARUP, I assume would show a positive result for it as well. I tested positive 10 months after I came back from South Africa and had a horrible illness matching all of the symptoms of coxsackie B. This was the illness that left me nearly housebound since then. I am now experiencing heart issues that may be related to CVB and have an echocardiogram scheduled.
All of the supplements and medications I‘ve come across so far have been for B1-B5. B6 is so rare that I think it gets put on the back burner. I know the Rega compounds A and 17 are supposed to be released this year. Until it becomes available, does anyone have any suggestions? Thank you in advance!

 

[Hip]

Testing positive for a virus on an antibody test means that you have the virus. However, it does not necessarily mean that you have what ME/CFS doctors classify as an active infection; for that you need chronically high antibody levels to the virus.

It's usually only when you have an active infection, as evidence by high antibody levels (or in some case positive PCR), that ME/CFS doctors will consider treating you with antivirals or immunomodulators.

Do you know what your antibody levels are on the Quest test? And what is the antibody level that signifies a negative result on this test (it should state that on your lab report).



In the case of the ARUP coxsackievirus B tests, Dr Chia considers antibody titers of 1:160 and higher to be evidence of active infection.

His usual treatment is oxymatrine.

CVB6 is rare, but it's likely that oxymatrine will be effective for that. Oxymatrine is not an antiviral, but is an immunomodulator which boosts the immune response against the virus.

But note that oxymatrine only works well for around 10% of patients who try it, according to a PR poll. Although Dr Chia says he finds it works well for 30% of his enterovirus patients.



By the way, to demonstrate how insensitive Quest CVB results are for chronic enterovirus infections, here are the Quest and ARUP tests of one ME/CFS patient taken from the very same blood sample. You can see that ARUP shows several active infections, whereas Quest registers almost nothing.

 

[Hip]

Other than oxymatrine, Dr Chia sometimes uses the antiviral Epivir (only has mild antiviral effects), and sometimes tenofovir (can make major improvements for a few patients). These treatments are detailed in the coxsackievirus B and echovirus section of this roadmap document.

 

[PisForPerseverance]

My Coxsackie virus b6 was 1:8. It's the only b I have. My a's were 1:1600 and 1:800. 2 were 1:1600 2 were 1:800. My doctor has had success with the Byron white formula cox something. I can't remember what it's called. If you look up Byron white, I think it will be self evident which one it is. They have to be given to you by a doctor. He's been treating infections for much of his career. He asked if there's any heart issues going on for me and I said no so it's possible he would have made a different or more likely additional recommendation if I did. But I am going to start taking this. My test was LabCorp and I don't know where that fits on the sensitivity level. I don't know what Arup is. Anyway I can send you an article by him if you'd like from about ten years ago on "cfids" discussing his success with these formulas after using antibiotics and antivirals and various natural medicines for a while first. They're not the only thing he uses to treat infections by any means. If you can get access to it, I would give it a try. If you can't, I'll get one for you and you can pay me for it. If you'd like, next time we speak I can ask him what he'd say if I had heart complications. That will be in about a week.

He did also talk about how Coxsackie can be very present in the gut. And that when it is treated in the gut, it will just empty out without die-off. I also did a short course of isatis because I thought I was having particularly high Coxsackie symptoms at one point and that's what I had on me. Me and him discussed it and he suggested I keep taking it and see what benefit I get and then start the formula. Isatis has been shown effective for coxsackie but I'm not sure which Coxsackie it was tested on. I bought mine from supreme nutrition products they're really good quality. I found them myself but turns out my doctor uses them as well. Word of warning that I got very stomach sick on isatis and didn't know that was why. It is not a common occurrence from what I understand but some get it. It's a powerful herb and should be taken only short term. I did feel like it got me past whatever flare was particularly bad at the time, but I don't know if it was coxsackie. Regardless I have to treat coxsackie. I have a number of high virus numbers and bacterial infections, some of my viral symptoms have improved, so it's just one domino for me. Look it up and see if it might be appropriate for you and heart symptoms. This is the "clinical indications of supreme nutrition products" for doctors, but ya know, for everyone.

 

[PisForPerseverance]

For reference, it's 1 to one thousand six hundred that my coxsackie A's were. In comparison to the amount Dr chia considers active, it's much higher.

 

[Hip]

My Coxsackie virus b6 was 1:8. It's the only b I have. My a's were 1:1600 and 1:800. 2 were 1:1600 2 were 1:800.

It's possible you could have other active coxsackievirus B infections, if you investigated with a more sensitive test.

I believe the LabCorp CVB antibody test you took is similar to the Quest one: they are both complement fixation-type antibody tests, which Dr Chia says is not sensitive enough to detect chronic enterovirus.

Dr Chia recommends the sensitive neutralization-type antibody tests for use in ME/CFS, such as the ARUP Lab CVB antibody tests.

Coxsackievirus A is not linked to ME/CFS, as far as I know.

 

[PisForPerseverance]

@Hip Great thank you for the information. There's another company my doctor uses to look for active infections it's new and uses other immune components besides antibodies and I've done that for some bacteria and for ebv so far, it's expensive so I will add more on later. I'll see what my best options are as far as that and arup for retesting as I treat more.

Cox a may not be linked, yet, but I don't think that says too much. Regardless, active viruses need to be dealt with in some way. Thanks again

 

[PisForPerseverance]

One more thing @Springbok1988 is that lately I have started seeing two Chinese doctors (from China, I'm in the us), and they've been very helpful for one of my conditions in a short amount of time. Miraculous really. Acupuncture and herbs. So I'm beginning to now bring them any of my issues and definitely if I didn't have any other direction or treatment on a pressing viral problem, I would bring it to them and start on herbs. (And do my own research on whatever they prescribe as I always do first). It's worth looking into literature on how coxsackie is treated in China, if there is any published in English language journals. I found a number of publications on very detailed biochemical mechanisms of action for herbs studied to treat endometriosis in China while my doctor was prescribing me a formula. I was blown away. I hadn't come across anything else that so fully heals the disease and in such a smart manner. If there are doctors near you trained in Chinese medicine, especially who've gotten their doctorates in China, you might look into it.

 

[Hip]

Cox a may not be linked, yet, but I don't think that says too much.

Coxsackievirus A has not been linked to any chronic disease, to my knowledge.

Whereas coxsackievirus B is linked to many chronic diseases, including: type 1 diabetes, chronic myocarditis, motor neuron disease, Crohn's disease, Sjogren's, and ME/CFS.

This suggests coxsackievirus A may not generally be able to form the chronic tissue infections that may drive chronic disease. We know it may cause acute infections, but perhaps cannot form chronic ones.

There's another company my doctor uses to look for active infections it's new and uses other immune components besides antibodies and I've done that for some bacteria and for ebv so far, it's expensive so I will add more on later.

If a test has not been validated and calibrated by an ME/CFS doctor, it may be hard to interpret its results.

Dr Chia arrived at the 1:160 threshold for the ARUP test by testing hundreds of ME/CFS patients as well as healthy controls on this test. That allowed him to observe that most healthy controls had titers below 1:160, whereas most patients have titers of 1:160 or above.

In this way you can determine the threshold antibody level for active infection in ME/CFS.

The 1:160 titer however does not necessarily apply to antibody tests from other labs, as each lab test is slightly different.

 

[PisForPerseverance]

@Hip those thoughts make sense about not being able to form chronic infection. But 1) not all chronic infection manifests as me/cfs symptoms or the core symptom. I'm not only concerned with what occurs in me/cfs, I'm concerned with any of my symptoms and conditions being helped by treatment, no matter if they are extremely particular to mecfs or not. 2) As such, a testing method wouldn't have to be calibrated by an mecfs doc in order to be useful in determining active infection. As in other people with illness besides mecfs can be used. I won't go more into design because I'm not knowledgeable enough but do you see what I'm saying? On the Cox a, I just dont think the fact that no condition has been linked to it yet says too much. I'm now curious to look it up and ask my doctor about Cox a specificlly. My antibodies are extremely high and my doctor said that speaks to active infection on Cox A. I was diagnosed with it as a teenager from rashes so I wonder what that means.

Coxsackievirus A has not been linked to any chronic disease, to my knowledge.

Whereas coxsackievirus B is linked to many chronic diseases, including: type 1 diabetes, chronic myocarditis, motor neuron disease, Crohn's disease, Sjogren's, and ME/CFS.

This suggests coxsackievirus A may not generally be able to form the chronic tissue infections that may drive chronic disease. We know it may cause acute infections, but perhaps cannot form chronic ones.





If a test has not been validated and calibrated by an ME/CFS doctor, it may be hard to interpret its results.

Dr Chia arrived at the 1:160 threshold for the ARUP test by testing hundreds of ME/CFS patients as well as healthy controls on this test. That allowed him to observe that most healthy controls had titers below 1:160, whereas most patients have titers of 1:160 or above.

In this way you can determine the threshold antibody level for active infection in ME/CFS.

The 1:160 titer however does not necessarily apply to antibody tests from other labs, as each lab test is slightly different.

 

[Hip]

As such, a testing method wouldn't have to be calibrated by an mecfs doc in order to be useful in determining active infection.

The concept of an active infection in ME/CFS is a controversial subject, full of complexity and differing views. And "active infection" has a different meaning, depending on whether you are talking to an ME/CFS doctor, or some other medical professional.


For regular doctors and infectious disease specialists, an active infection usually means one which can be detected in the blood. So if you perform a PCR on the blood and you directly detect the presence of a pathogen using that PCR, that is classed an active infection, by infectious disease specialists and regular doctors.

But ME/CFS patients are usually negative by blood PCR for all pathogens. So by the normal meaning of an active infection, ME/CFS patients do not have active infections. If you cannot see the infection with PCR, then the infection is not there.

However, ME/CFS doctors have their own definition of what constitutes an active infection. It's observed that ME/CFS patients usually have elevated antibody levels to one or more pathogens. To ME/CFS doctors, this suggests there may be an active infection somewhere in the body. But remember that antibody testing is not a direct method of detecting the pathogen, it is an indirect method, as it measures the immune response to the pathogen, not the pathogen itself. So it's not direct solid evidence of an infection.

Because there is often only indirect antibody evidence of an infection in ME/CFS, some ME/CFS researchers don't think there are any active infections at all in ME/CFS, and believe the high antibody levels are just caused by an immune system which has gone haywire, pumping out antibodies when there is no infection present.

So even if you have chronically high antibody levels, these researchers do not consider that you have an active infection.

The interesting thing in ME/CFS, though, is that if you cut out a biopsy sample of ME/CFS patient's muscles or stomach tissues, they will often test positive for enterovirus by PCR (even though they may be negative when the blood is tested by PCR). This suggests the infections in ME/CFS are in the tissues, and not in the blood.

So it may be the case that the elevated antibody levels seen in ME/CFS reflect an infection hidden in the tissues, even though there is usually no detectable infection in the blood in ME/CFS.

Anyway, as you can see, it is a complex subject!