What does it mean to have multiple chronic viral infections AND multiple autoimmune conditions?

[ljimbo423]

But you have been tested for enterovirus, right?

No, I don't believe chronic viral infections play a significant role in the ongoing cause of ME/CFS, only triggering it. The benefits some people get from antivirals, I think are through immune system modulation, not treating viral reactivations.

I think ebv and enteroviral infections, etc. cause inflammation in the gut, dysbiosis and leaky gut. This is what causes their ME/CFS, imo.

 

[Treeman]

The benefits some people get from antivirals, I think are through immune system modulation

I have read a number of times this idea, does anyone have any research links to it?

 

[sometexan84]

No, I don't believe chronic viral infections play a significant role in the ongoing cause of ME/CFS, only triggering it.

But don't you think it's worth knowing the trigger, and treating that trigger?

If an infection (strep, etc) or virus (enterovirus, etc) or condition (gut dysbiosis, etc) triggered another condition (autoimmune, viral reactivations, etc), which then caused CFS symptoms... wouldn't you want to treat all of the steps involved?

That's my intention for sure. Including finding and treating any primary immodeficiencies I might have.

BTW found a GREAT website for finding related diseases - https://www.malacards.org/

 

[ljimbo423]

But don't you think it's worth knowing the trigger, and treating that trigger?

I don't think the trigger is still there for the vast majority of us. So to treat it, to me, seems to point me in the wrong direction. I think the high viral titers, found in some of us with ME/CFS, are not reactivations.

These same high titers are often found in the general population as well.

If an infection (strep, etc) or virus (enterovirus, etc) or condition (gut dysbiosis, etc) triggered another condition (autoimmune, viral reactivations, etc), which then caused CFS symptoms... wouldn't you want to treat all of the steps involved?

I think these infections like ebv etc, cause changes in the body. It's those changes in the body that cause ME/CFS and need to be treated, not what initially caused them (ebv, etc.) and is now gone.

That's my intention for sure. Including finding and treating any primary immodeficiencies I might have.

Go for it, I wish you nothing but the best of luck!

This is only my view, based on my research and experience. Some people agree, some don't. Such is life, no biggie!

BTW found a GREAT website for finding related diseases -

Sounds like this is going to occupy a lot of your time in the near future. I hope it gives you some good answers!

 

[ljimbo423]

I have read a number of times this idea, does anyone have any research links to it?

This is a study done by Jose Montoya. Who is a big advocate of viral reactivations being the cause of a subset of ME/CFS.

Note that he uses elevated IgG antibody titers against HHV-6 and EBV as criteria for the study and treatment. However, in the next to the last paragraph, he says
"Viral IgG antibody titers did not differ between arms" after treatment.

To me this says the valganciclovir did not treat the viruses and therefore high antibody titers. So it must have worked in some other way. It doesn't make sense to me that he would use high antibody titers for establishing the cause for treatment.

Treat them, note that there was improvement, then say the improvement might be caused by an "antiviral effect", when there was no change in the antibody titer levels. The very criteria he used to establish viral reactivations.

If the antivirals were treating actual HHV-6 or EBV reactivations, it seems to me the high IGG antibody levels would drop but they didn't.

He does say that immunomodulation could be the cause for improvement in the patients and I think he's right about that.

Abstract
There is no known treatment for chronic fatigue syndrome (CFS). Little is known about its pathogenesis. Human herpesvirus 6 (HHV-6) and Epstein-Barr virus (EBV) have been proposed as infectious triggers. Thirty CFS patients with elevated IgG antibody titers against HHV-6 and EBV were randomized 2:1 to receive valganciclovir (VGCV) or placebo for 6 months in a double-blind, placebo-controlled trial.

Clinical endpoints aimed at measuring physical and mental fatigue included the Multidimensional Fatigue Inventory (MFI-20) and Fatigue Severity Scale (FSS) scores, self-reported cognitive function, and physician-determined responder status. Biological endpoints included monocyte and neutrophil counts and cytokine levels.

VGCV patients experienced a greater improvement by MFI-20 at 9 months from baseline compared to placebo patients but this difference was not statistically significant. However, statistically significant differences in trajectories between groups were observed in MFI-20 mental fatigue subscore (P = 0.039), FSS score (P = 0.006), and cognitive function (P = 0.025).

VGCV patients experienced these improvements within the first 3 months and maintained that benefit over the remaining 9 months. Patients in the VGCV arm were 7.4 times more likely to be classified as responders (P = 0.029).

In the VGCV arm, monocyte counts decreased (P < 0.001), neutrophil counts increased (P = 0.037) and cytokines were more likely to evolve towards a Th1-profile (P < 0.001). Viral IgG antibody titers did not differ between arms.

VGCV may have clinical benefit in a subset of CFS patients independent of placebo effect, possibly mediated by immunomodulation and/or antiviral effect. Further investigation with longer treatment duration and a larger sample size is warranted.

Source

There are also other studies that show no difference in high viral antibody titers in ME/CFS, than in healthy controls. Which again, makes me think the improvement some people are getting from antivirals is from immune modulation or some other avenue, not treating viruses.

 

[sometexan84]

I don't think the trigger is still there for the vast majority of us. So to treat it, to me, seems to point me in the wrong direction.

Well, I can only speak for myself, but I lean towards my trigger(s) still being present. Or at least remnants from trigger(s). But, to what you're saying, man, I hope that's not true. Would make it so much harder.

I'm not looking to improve my symptoms. I'm looking to eradicate my symptoms 100%. I'm looking to come out of this healthier than "healthy" (non-CFS) individuals. That's my goal. And also to use any genetic susceptibilities I find along the way to help ensure lifelong health for my kids.

I think the high viral titers, found in some of us with ME/CFS, are not reactivations.

These same high titers are often found in the general population as well.

At this point, I think it's a case by case thing. I saw the thing where you put up the graphic on Ron Davis and his thing talking about active viruses are in both healthy and ill patients. And really, I can't speak to that because I'm not sure I know much about the multiplex PCR testing, or the study he did.

BUT, in regards to EBV, I've been using this in some of my EBV interpretations. (Mayo) "The presence of antibody to the early antigen (EA) of Epstein-Barr virus (EBV) indicates that EBV is actively replicating".

It's also tricky because of the different terminology (e.g. reactivation, latent, active, acute, primary, chronic, replication, persistence, etc). And like, Enterovirus B, it's never a reactivation. Because it can't become latent. "enterovirus is not capable of assuming a latent state within cells". And the high titres I have suggest I have active chronic infection here, based on the numbers they've given to help make that determination. But not all the infection testing has such easy benchmark data, which sux.

I think these infections like ebv etc, cause changes in the body. It's those changes in the body that cause ME/CFS and need to be treated, not what initially caused them (ebv, etc.) and is now gone.

You are correct. You can't treat what's not there. But if I had gut dybiosis, I would check for inflammation in my GI tract. If I had inflammation in my GI tract, I would test to see if I had Crohn's disease. As well as test for bacteria and viral infections that could be involved. As well as test for whatever else might be related based on current knowledge of my overall health situation/condition.

This is only my view, based on my research and experience. Some people agree, some don't.

FALSE! I don't think that way. I want to know what you know. Show me! For instance, if you have any more references for the stuff about misinterpretations of viral titres, I want to learn MORE about that. I'm literally asking if you would be so kind as to show me links to the articles and/or videos because I could be way off-base on something that I thought I already had nailed down ya know?

To me, I'm either correct, or incorrect. And if I'm incorrect on something, I want to know, and fix it. I work towards that w/ everything in life.

Honestly, I didn't think we were disagreeing about anything. Just sharing. Which is caring

 

[sometexan84]

Note that he uses elevated IgG antibody titers against HHV-6 and EBV as criteria

Yea, I have no clue why he'd do that. I've seen multiple times people using EA (Early Antigen) as the measure for success in treatment for active EBV. I don't have bookmarks for all of them. But in addition to that link I sent in last post, here's another one (not that healthline is like a go-to reference.. but in any case...)

https://www.healthline.com/health/epstein-barr-virus

Early antigen (EA). Antibodies to EA appear during an active infection. They typically become undetectable after several months, although they may persist for longer in some people.

But I think it's important that you look at that and IgM. If IgM is negative, then it's NOT the first infection. If IgM is negative, and EA is positive, then it's Active Re-Activation (and likely a Chronic Active infection). But there are some circumstances where that wouldn't be the case. But mostly, that is what that would mean.

 

[ljimbo423]

For instance, if you have any more references for the stuff about misinterpretations of viral titres, I want to learn MORE about that.

I have a couple of links I'll try to put up tomorrow. It's been a busy day for me and it's time to kick back and watch some Amazon prime video.

Honestly, I didn't think we were disagreeing about anything. Just sharing. Which is caring

Agreed!

 

[Treeman]

Note that he uses elevated IgG antibody titers against HHV-6 and EBV as criteria for the study and treatment. However, in the next to the last paragraph, he says
"Viral IgG antibody titers did not differ between arms" after treatment.

To me this says the valganciclovir did not treat the viruses and therefore high antibody titers. So it must have worked in some other way. It doesn't make sense to me that he would use high antibody titers for establishing the cause for treatment.

Thanks, Learner said the opposite. He said that in response to using anti virals, "antibody levels fell and he reported that many patients resumed normal activities" https://phoenixrising.me/interviews...ntiviral-treatment-study-0510-by-cort-johnson

I guess no one knows categorically, but some benefit from the use of anti virals that have been produced to stop the replication of them, which is what Learner found.

 

[ljimbo423]

I guess no one knows categorically, but some benefit from the use of anti virals that have been produced to stop the replication of them, which is what Learner found.

I agree that nobody knows for sure. Like most every study done on ME/CFS, there are inconsistent findings from one study to another.

My personal view is the benefits people are getting from antivirals are from immune modulation, as Jose Montoyas' study shows. Because their was no change in viral antibody levels, yet the patients improved.

EDIT- If studies found consistently that viral reactivation was the cause of ME/CFS even in a subset of patients.

There would be a consensus among researchers and doctors, declaring that at least a subset of ME/CFS is caused by these reactivation. This has not happened because their isn't enough evidence.

At this point it's simply a matter of which side someone chooses. What their opinion is.

 

[ljimbo423]

For instance, if you have any more references for the stuff about misinterpretations of viral titres, I want to learn MORE about that.

This first pic shows that there was no difference in the percentage of positive EBV and CMV reactivations between healthy subjects and ME/CFS patients, as determined by high antibody titers.

"HS" means Healthy Subjects-

https://www.frontiersin.org/articles/10.3389/fimmu.2018.01028/full?report=reader

This second study also found no difference in the percentage of Healthy Controls (HC) and ME/CFS patients for viral reactivations, according to their antibody titers -

https://www.frontiersin.org/articles/10.3389/fimmu.2019.00796/full

These studies show that just as many healthy people, without symptoms, have these viral reactivations as ME/CFS patients. So why would I assume that my high viral titers (if I had high titers) were causing my ME/CFS? When just as many healthy controls have them and are not sick.

To me, it seems like a big leap, for me to make that assumption.

 

[sometexan84]

In that first study, I don't know why, but they were using EBV VCA IgG only. Which I learned early on is not too helpful. I put some links above that show EA (Early Antigen) is a good indicator, probably more important than any others. But below are some articles showing the correlation between EBV and CFS, all of which use the early antigen IgG as a key parameter. Tried to link to only articles from the past year or 2.

EA isn't perfect, but it can indicate active infection. Or re-activation if IgM is negative. Caveat: 20% of healthy people may have this antibody for years

The presence of antibody to the early antigen (EA) of Epstein-Barr virus (EBV) indicates that EBV is actively replicating.

That second study you linked to, again it says it used VCA IgM/IgG and NA IgG.

• VCA IgM - obviously, probably active acute infection if positive
• VCA IgG - Idk how true this is for all viruses, as documentation suggests some viruses will actually decrease IgG over time, and some faster than others. BUT, VCA IgG for EBV "persists for the rest of a person’s life". Which isn't helpful for CFS at all. It just doesn't have much meaning.
• Nuclear Antigen - Again, this is one that persists for the rest of you life. For CFS, this isn't helpful either.

If what I am saying is true, then you'd probably ask Why would they do these studies like this then?! My answer, I have no effing clue.

https://me-pedia.org/wiki/Epstein-Barr_virus

https://www.drmyhill.co.uk/wiki/Valacyclovir_in_the_treatment_of_post_viral_fatigue_syndrome

https://www.jstage.jst.go.jp/article/internalmedicine1992/31/3/31_3_313/_article

https://www.karger.com/Article/Abstract/150450

 

[sometexan84]

Here's the best table I've found.

So for me, since I was...
VCA IgM - Negative
VCA IgG - Positive
EA - Positive
EBNA - Positive

I'd be interpreted as possibly Recent, and very likely Reactivation.

https://arupconsult.com/content/epstein-barr-virus

 

[andyguitar]

If what I am saying is true, then you'd probably ask Why would they do these studies like this then?! My answer, I have no effing clue.

If you look back over the history of ME and CFS you will see that for years both were thought by the majority in the medical profession to be a mental disorder. However a small number of Docs and some "Alternative" health practioners (and most patients) saw both as being a physical illness. So they set out to look for signs of infection. They believe they found it by measuring antibody levels.

 

[ljimbo423]

EA isn't perfect, but it can indicate active infection. Or re-activation if IgM is negative. Caveat: 20% of healthy people may have this antibody for years

How do you know you're not that 1 out of 5 people (20%) that have the Early Antigen for years?

I'm sorry, I don't mean to be a pain but I guess I am. I just feel very strongly about my views, as I think you do to.

Do you get PEM and if so does it usually present with a delay of the worst symptoms from 1-3 days?

 

[sometexan84]

How do you know you're not that 1 out of 5 people (20%) that have the Early Antigen for years?

Honestly, I'd love to go find the answer for you. And I might at some point. Time is of the essence though, and I gotta put my time into researching the elements of my condition that I know way less about, like non-strep induced Guttate Psoriasis, Chlamydia pneumoniae test interpretations, what tests to do for figuring out where Echovirus 11 originated in body, how far it's gotten and the damage its done, more about specific tests I need to have done like for T-Cell function and B-cell function and analysis of Cytokines, how different types of cells, proteins, and inteferons activate or change and their effect on infections and symptoms, etc etc. I imagine I will be cured before I know 100% about all of it. Sometimes you just gotta trust your gut. Even if it has dysbiosis. (<< weird joke)

Do you get PEM and if so does it usually present with a delay of the worst symptoms from 1-3 days?

I do, and the physical aspect was one of things I noticed towards the beginning. But it took me a while to realize I got it from strenuous mental activity too. It happens 24-48 hrs after activity for me.

 

[ljimbo423]

I do, and the physical aspect was one of things I noticed towards the beginning. But it took me a while to realize I got it from strenuous mental activity too. It happens 24-48 hrs after activity for me.

That's classic ME/CFS PEM. I get mine 48 hours after I over-do-it physically like clockwork, every time.

Good luck with your research!

 

[andyguitar]

. Time is of the essence though, and I gotta put my time into researching the elements of my condition that I know way less about, like non-strep induced Guttate Psoriasis

Fatigue is common with Psoriasis. If a Strep infection triggered it the Strep can be gone but the Psoriasis continues. So it can go like this.... You get Step, immune system reacts. Strep goes, immune system stays switched on. So you have an autoimmune condition. Not an active infection.

 

[sometexan84]

Fatigue is common with Psoriasis. If a Strep infection triggered it the Strep can be gone but the Psoriasis continues. So it can go like this.... You get Step, immune system reacts. Strep goes, immune system stays switched on. So you have an autoimmune condition. Not an active infection.

Yea, but it's still one of things I need to learn more about.

If I do have an infection of Strep A, or maybe it was C. Pneumoniae that triggered Psoriasis, I'll treat that. Just got my Cpn prescription, and got my test done for Strep A the other day, so waiting results there.

But I'm also going to treat the autoimmune condition. I mean, I have the direct approach stuff, like my dermatologist has me on Methotrexate and Triamcinolone acetonide cream, which is fine (and psorisis is mostly gone now). But if I have a primary immunodeficiency like X-linked agammaglobulinemia (which I'll be finding out soon!), the IVIG seems to treat that w/ success. If I test positive for high-risk HLA allele gene variations showing susceptibility to certain conditions or infections, there are lots of different types of intravenous infusions for treatment options. Lots of different types of Immune-modulating therapies.

Can't drag me down w/ that negative talk, I'm on a roll!

 

[lenora]

@lenora Thx for the response! I'm Ft Worth. PM me if you know any CFS specialists in DFW.

Hi Sometexan84....I would happily give you the name of a CFS specialist here, but everyone I know is retiring or already retired (I'm 73). I would call a hospital ask for the names of Dr.s accepting patients, chances are they're just setting up) and go to one of them. The new Rheumatologists are also very involved in ME, and of course anyone in CFS work....but they're very hard to come by. If it's a new rheumatologist, then I would do it locally instead of coming all the way to DFS unless you work here, of course.

If I heard of a specialist in CFS I'll let you know, but I do know the Rheumatologists are also very good. Yours, Lenora.