To those who believe their ME/CFS began w/ EBV.....

[sometexan84]

I only disagreed with the opinion that this would eliminate herpesviruses from the etiology or pathogenesis. In my eyes, this is still on the table.

Absolutely.

The point of this thread wasn't necessarily to exclude the idea of herpesvirus altogether, but rather, a response to those that believe their condition is from EBV that may or may not be aware of some important, relevant info.

 

[Hip]

I only disagreed with the opinion that this would eliminate herpesviruses from the etiology or pathogenesis. In my eyes, this is still on the table.

I personally think both herpesviruses and enteroviruses are able to cause ME/CFS by some means or other, and I suspect in both cases, it is ongoing infections that maintain the ME/CFS.

But enterovirus needs more moral support, as it has been widely overlooked in the ME/CFS world in recent decades. Most of the ME/CFS doctors and researchers look first to the herpesviruses.

There are also some more obscure viruses known to lead to ME/CFS, such as Ross River virus, and West Nile Virus.


Long COVID will likely turn out to be just another form of ME/CFS, I think, so we may need to add coronavirus to the list of ME/CFS-associated viruses as well.

I would not be surprised if coronavirus will be found capable of forming non-cytolytic coronavirus infections, enabling them to live long term in the tissues, just like enterovirus.

 

[sometexan84]

I personally think both herpesviruses and enteroviruses are able to cause ME/CFS by some means or other, and I suspect in both cases, it is ongoing infections that maintain the ME/CFS.

But enterovirus needs more moral support, as it has been widely overlooked in the ME/CFS world in recent decades. Most of the ME/CFS doctors and researchers look first to the herpesviruses.

There are also some more obscure viruses known to lead to ME/CFS, such as Ross River virus, and West Nile Virus.


Long COVID will likely turn out to be just another form of ME/CFS, I think, so we may need to add coronavirus to the list of ME/CFS-associated viruses as well.

I would not be surprised if coronavirus will be found capable of forming non-cytolytic coronavirus infections, enabling them to live long term in the tissues, just like enterovirus.

All those you just mentioned, I highlighted those on a neat chart sent to me by @Nuno.

Check out how they're all grouped together

 

[sometexan84]

I would not be surprised if coronavirus will be found capable of forming non-cytolytic coronavirus infections, enabling them to live long term in the tissues, just like enterovirus.

It is, and has been found. The evidence in published studies is there, I just haven't seen it highlighted in a single study. Instead you find just pieces of information in multiple articles that point to this being this case.

They've even found viral proteins and rna in stomach biopsies... months after acute covid infection.

 

[Hip]

All those you just mentioned, I highlighted those on a neat chart sent to me by @Nuno.

Check out how they're all grouped together

Nice chart!

Yes, I suspect that many of these viruses from the +ssRNA category (positive-sense single-stranded RNA viruses) are capable of forming chronic non-cytolytic infections, which in turn may cause a chronic fatiguing illness.

Look at some of these +ssRNA viruses:

Enterovirus — known to cause non-cytolytic infections, and linked to ME/CFS
Dengue virus — known to cause non-cytolytic infections, and known to cause a chronic ME/CFS-like illness
Hepatitis C virus — known to cause non-cytolytic infections, and known to cause a chronic fatiguing illness

SARS-CoV-1 coronavirus — known to cause a chronic ME/CFS-like illness
SARS-CoV-2 coronavirus — known to cause a chronic ME/CFS-like illness (long COVID)

Ross River virus — linked to ME/CFS
West Nile Virus — linked to ME/CFS



Alphaviruses are a genus of +ssRNA viruses which are known form non-cytolytic infections. Ross River virus is a member of the Alphavirus genus.

A list of other +ssRNA viruses here.

 

[sometexan84]

A list of other +ssRNA viruses here.

Wow, I've never heard of a bunch of these. Interesting that two of them have "encephalomyelitis" in the name.

I see Rubella, that's been suspected too.

Oh wait, there's actually a lot that say encephalomyelitis.

 

[Pyrrhus]

A comment from an unrelated thread:

I like to refer to herpesviruses as "Me too!" viruses, as they tend to re-activate whenever they sense that inflammation is occurring in the body.

These re-activations can be treated with anti-herpes medication, and sometimes that produces an increase in quality of life, but until the underlying inflammation is resolved, there is always the possibility of another re-activation.

There is a particular problem if the underlying inflammation is caused by a different viral infection. Although most viruses are too small to be seen under the microscope, herpesviruses are large enough to be seen under the microscope. So, if a patient has symptoms of a viral infection and a pathologist examines their blood under the microscope, all they might see is a herpesvirus. Then, they might erroneously conclude that the cause of the viral symptoms is a herpesvirus such as EBV.

 

[Hip]

I like to refer to herpesviruses as "Me too!" viruses, as they tend to re-activate whenever they sense that inflammation is occurring in the body.

I guess with any virus that exists in a latent state in the body, if they sense any immune weakness (and that may come from another viral infection), that may be the time the are programmed to reactivate, as that is the best time for reactivation.

It is only DNA viruses which can form latency, RNA viruses cannot enter into a latent state.

So it is only viruses like herpesviruses (these are DNA viruses) which will be able to reactivate.

 

[Hip]

They've even found viral proteins and rna in stomach biopsies... months after acute covid infection.

I think I saw a study about that. Though I think the study I saw was just on those who had COVID, but not long COVID.

It would be interesting is to perform some biopsies on long COVID patients, and see if these guys have much more coronavirus in their tissues compared to people who had COVID a few months ago but have no long term symptoms.

If they have already found coronavirus in the tissues of COVID patients with no major long term symptoms, I would bet they will find much higher levels in long COVID patients.

 

[Learner1]

If your story is anything like mine, you'll be tested for EBV way before even learning about Enterovirus B and its relationship to chronic fatigue symptoms.

And as such, it's very natural to point to these abnormal EBV results as the cause, especially when you hear EBV is connected to ME/CFS.

From the Enterovirus Foundation....

you can find a lot of research out there backing this

Okay, I'll bite. What commercial US lab does What sort of test for this and how much is it going to cost? Could it be covered by insurance. And what is the appropriate ICD-10 code? And, if you have it, what on Earth do you do about it. I keep hearing these discussions about enteroviruses enteroviruses enteroviruses and never seem to really understand what anybody does to cure them. What's the plan of action?

Did you dose it correcly? HOw did you get enough valacyclovir? For me, I would have to take 2x1000mg 3xday. Insurance will only pay for 1 or 2 per day, well below the recommended amount. 2000mg is for larger adults.

My doctor originally prescribed 1 g of valacyclovir twice daily. Then, ME/ CFS specialist, wanted it to raised to be three grams per day to be effective for HHV6, CMV and EBV. My insurance balk at this, so he put me on valgancyclovir, which helped.

However, it reactivated in April after my second Middrna shot, and the valganciclovir has not been as successful this time around. We are now trying famvir too. My Doctor said my insurance will probably not like the dose of the famvir, and they helpfully cut my 90 day prescription to 10.5 days. I have learned that almost anything can be appealed, so I went to the underwriter and asked for permission, explaining that I had far more than a little herpes simplex outbreak, but I was fighting two serious viruses.

Yea, see that's another issue altogether. The misinterpretation of EBV results by docs and patients. Here's a screenshot from this thread showing the correct EBV lab interpretations

Your chart is a brilliant example of misinterpretation. The only EBV antibodies that ever showed up on my test were very high VCA IGG. But I did have a positive PCR. My doctor says this is rare but he suspect's my immune system was not fighting properly and making the other antibodies. So, this chart below could really dissuade somebody from getting a treatment for a real virus that's actually there. Too many doctors do this all the time and I've known more than a few patients who when they finally got to a doctor who believed it and prescribed the antivirals, they started to become much better.

 

[heapsreal]

The longer one has been ill with cfsme, the greater potential of more chronic infections.
We need 1 pill with 15 drugs in it, several antibiotics, several antivirals , antifungals and anti inflammatories, at a cheap cost

 

[junkcrap50]

I keep hearing these discussions about enteroviruses enteroviruses enteroviruses and never seem to really understand what anybody does to cure them. What's the plan of action?

From what I can, nothing really. Just oxymatrine. It’s why I haven’t bothered getting a test for Coxsackie. You can just try oxymatrine for 3 months at max dose and see if it helps.

My doctor originally prescribed 1 g of valacyclovir twice daily. Then, ME/ CFS specialist, wanted it to raised to be three grams per day to be effective for HHV6, CMV and EBV. My insurance balk at this, so he put me on valgancyclovir, which helped.

Yep. 1g 3x/day is Learner’s protocol but Learner used higher doses for larger patients. Yeah insurance only gives me 30 pills per month. Been wanting to try valgancyclovir for a while but my doctor thinks it’s not with the liver risk (which I don’t really get bc seems like everyone on here be takes it).

 

[sometexan84]

I think I saw a study about that. Though I think the study I saw was just on those who had COVID, but not long COVID.

Yes, that's true. They weren't diagnosed w/ LC, but the supplemental material shows that the covid patients that were positive in the biopsy actually all had symptoms and/or conditions known to be caused by Enterovirus... the ME/CFS of covid virus.

And (you might not know this tidbit), but EV can linger a long time before turning into the persistent infection in ME/CFS.

Based on my personal timeline, I believe I had at least one initial EV infection 14 months before my ME/CFS started. Just saying, some of those individuals may end up developing Long Covid.

Yes, they should definitely do those stomach biopsies on LC patients. No idea why they have not done this yet.

 

[sometexan84]

Okay, I'll bite. What commercial US lab does What sort of test for this and how much is it going to cost? Could it be covered by insurance. And what is the appropriate ICD-10 code? And, if you have it, what on Earth do you do about it. I keep hearing these discussions about enteroviruses enteroviruses enteroviruses and never seem to really understand what anybody does to cure them. What's the plan of action?

ARUP labs. Only one in the U.S. w/ sensitive enough test.

These two...
https://ltd.aruplab.com/Tests/Pub/0060055
https://ltd.aruplab.com/Tests/Pub/0060053

I've been getting these tests done via my local Any Lab Test Now for like $375 total. But I believe it is normally more expensive than that.

It's so difficult to get these ARUP tests done, that I don't even bother w/ insurance. I just pay out of pocket because at least I can get the test done that way, though it can still be a challenge.

I will tell you the cure as soon as I find it.

 

[Martin aka paused||M.E.]

I'm positive for CoxB4 and I can't remember any fever or sth else but diarrhea when I got from very mild to moderate. It was in August - enteroviral season.

Regarding immune suppression and reactivation : my immune system highly suppressed and I have many inflammatory markers. But there is no reactivation of any HHV so far I'm aware of (perhaps HSV I/II as there are permanently elevated levels of IgM) OR PCR are negative be because the HHV is hiding in tissues or brain PLUS my immune system doesn't work properly means doesn't react producing IgM (I only have really high IgG to VZV but I was vaccinated as a child so I don't know if it's that or reactivation).

I keep hearing these discussions about enteroviruses enteroviruses enteroviruses and never seem to really understand what anybody does to cure them. What's the plan of action?

That is indeed a big problem. I'm on full dose Equilibrant for a month now without any reaction. And I recently started on tenofovir which shows antiviral properties against Coxsackie B4. Problem here is that it doesn't cross BBB.

The problems with Interferons are always the costs and that you relapse a few months after the therapy.

Maraviroc is interesting too. It's pricey but if tenofovir won't work I'll try it bc it can cross the BBB.

 

[nerd]

We need 1 pill with 15 drugs in it, several antibiotics, several antivirals , antifungals and anti inflammatories, at a cheap cost

Antibiotics come with great risks of destroying the microbiome and causing resistencies, which can worsen ME. Antivirals come with genotoxicity risks and risks for harming the tubular cells, impairing the filtration rate, causing CKD. Not everything is safe like an Ivermectin pill.

PLUS my immune system doesn't work properly means doesn't react producing IgM (I only have really high IgG to VZV but I was vaccinated as a child so I don't know if it's that or reactivation).

It's normal for IgM to disappear a few weeks after the initial infection or vaccination. IgM can only reemerge under special circumstances.

 

[Pyrrhus]

It's normal for IgM to disappear a few weeks after the initial infection or vaccination. IgM can only reemerge under special circumstances.

I think @Martin aka paused||M.E. may have been referring to Selective IgM Deficiency, which is where your total IgM levels are unusually low, but your total IgG levels are normal. ME patients with Selective IgM Deficiency often will not show IgM in any serological test.

Hope this helps.

 

[Martin aka paused||M.E.]

I think @Martin aka paused||M.E. may have been referring to Selective IgM Deficiency, which is where your total IgM levels are unusually low, but your total IgG levels are normal. ME patients with Selective IgM Deficiency often will not show IgM in any serological test.

Hope this helps.

That's what I wanted to say. And that is the exact problem with AB tests. So if HHV hides in tissues or CNS you have no idea if it is a factor in your pathogenesis or not.

 

[Learner1]

ARUP labs. Only one in the U.S. w/ sensitive enough test.

These two...
https://ltd.aruplab.com/Tests/Pub/0060055
https://ltd.aruplab.com/Tests/Pub/0060053

I've been getting these tests done via my local Any Lab Test Now for like $375 total. But I believe it is normally more expensive than that.

It's so difficult to get these ARUP tests done, that I don't even bother w/ insurance. I just pay out of pocket because at least I can get the test done that way, though it can still be a challenge.

I will tell you the cure as soon as I find it.

Thanks for posting the tests. They seem to only be antibody tests, which don't work on someone on IVIG.

 

[Learner1]

1g 3x/day is Lerner’s protocol but Lerner used higher doses for larger patients. Yeah insurance only gives me 30 pills per month. Been wanting to try valgancyclovir for a while but my doctor thinks it’s not with the liver risk (which I don’t really get bc seems like everyone on here be takes it).

Jose Montoya did an interview a couple of years ago and said it has a bad reputation case it's been mostly given to advanced cancer and AIDS patients who are weak to begin with, but he had not had any problems giving it to ME/CFS patients my doctor has me do a standing order CBC and CMP every 3-4 weeks just to be sure.