3 main viruses linked to ME — enterovirus, EBV & HHV-6 — all infect B-cells: autoimmune import?

[SK2018]

Dysfunctional B cells autoreacting to unknown self antigens most likely.
That would explain the relapse after RTX ,.memory B cells return as obviously the naive cells are still making the same mistake upon re maturing.

@Hip, that was pretty much my working theory for ages, but now I'm not so sure. This is a repeat of stuff I said not long ago, but the things that made me doubt the B-cell infection hypothesis were:

* The absence of MECFS symptoms in HIV+ people, despite proliferation of herpes viruses. They even get cancers that are directly associated with herpes viruses, like karposy's sarcoma. But even so, its not till the very late stages that HIV+ people feel really fatigued and sick, well after the herpes proliferation has begun to happen. They don't have the feeling ill part - which suggests to me there's something more to MECFS.

* The short lived effects of rituximab on MECFS symptoms. If the problem were viral load alone, removal of a good portion of the infected cells should alleviate the problem for good. You'd have no greater viral load than any normal healthy person (who almost all harbour latent herpes viruses). But it turns out rtx only gives temporary relief; the symptoms soon return. You might say "well, that's because there were still enough infected cells to restart the infection". But then normal people carry some herpes infected cells too, why doesn't it take root in them? Again, the answer seems to be there is something different going on with us, that can't be explained by viral load alone.

* The mutliple triggers for MECFS. The Dubbo studies showed a good proportion of people with certain non-herpes infections end up with MECFS too. Ross River virus and Q fever have nothing to do with herpes, yet they can give rise to a chronic condition that looks identical to the ones seen following an acute EBV infection. Okay, so maybe you could say that the initial infection provides the opportunity for the herpes virus to reproduce, by stimulating replication of the infected B cells. But it could easily be something more generic - stimulating the immune system in some way.

Maybe herpes has a role to play in creating the conditions that make our immune systems spiral out of control. But perhaps its just too simple to say MECFS is just a problem with high levels of latent herpes infection.

 

[Woolie]

Dysfunctional B cells autoreacting to unknown self antigens most likely.
That would explain the relapse after RTX ,.memory B cells return as obviously the naive cells are still making the same mistake upon re maturing.

Yes I agree, @Shawn.

Your account is an immune dysfunction account, not a chronic infection account. A chronic infection account, on its own, cannot explain these phenomena (which was the point I was making). And if we start saying its both - autoimmune dysfunction AND chronic infection - then that's very messy and unhelpful, since the first dysfunction would seem to be the causal factor and the second would be a flow-on effect of that.

 

[Gingergrrl]

@Woolie Do you understand what is meant by plasma B cells versus memory B cells? (I am sure you do and it is probably something very basic)! I've been trying to research this from another thread where Shawn was discussing using cyclo for the plasma B cells vs. RTX for the memory B cells? I was wondering if you (or anyone) could explain this in very dumbed down terms for me ! And I agree with you guy's theory that the illness for me (whatever we eventually call it) started off viral but then turned autoimmune.

 

[Hip]

re: B-cell biopsy b/c I had not heard of that before!

It's the term Dr Fluge used in the video. I guess it means extracting the B-cells from the blood, and testing them for EBV infection.

What if someone started with chronic EBV infection of the B-cells but then in later years, the infection turned autoimmune? Could the RTX still cure their symptoms in a matter of days? Or would this only apply to someone in the active viral stage (prior to it turning autoimmune)? I hope this question makes sense. It does in my head

If by "EBV infection turning autoimmune" you mean an EBV triggering of ME/CFS (and we don't know whether this happens), then I would expect that once ME/CFS is triggered, it would take rituximab up to 7 or 8 months to fix as per normal with ME/CFS patients, rather than a few days to fix for chronic EBV infections.

 

[Gingergrrl]

It's the term Dr Fluge used in the video. I guess it means extracting the B-cells from the blood, and testing them for EBV infection.

So, it would be a regular blood draw and then they extract and biopsy the B cells from that blood draw (looking for EBV or autoantibodies)? Is this something only at the research stage or is it done by a regular doctor? Am fascinated by this concept.

If by "EBV infection turning autoimmune" you mean an EBV triggering of ME/CFS (and we don't know whether this happens), then I would expect that once ME/CFS is triggered, it would take rituximab up to 7 or 8 months to fix as per normal with ME/CFS patients, rather than a few days to fix for chronic EBV infections.

I wasn't thinking only of EBV vs. any viral infection switching from active infection to autoimmune. I also wasn't thinking of it being ME/CFS per se vs. the concept of infection (or immune deficiency) switching to autoimmune in general. I guess if someone did RTX during an active EBV infection, it could work within days (in theory) but if the infection is long gone (in my case it was mono/EBV in 2012 & second/final infection in 2013) and now I am left with the autoimmune dysfunction, then RTX could take 6 months or more to improve symptoms?

 

[Hip]

So, it would be a regular blood draw and then they extract and biopsy the B cells from that blood draw (looking for EBV or autoantibodies)? Is this something only at the research stage or is it done by a regular doctor? Am fascinated by this concept.

I don't really know anything about it.

I guess if someone did RTX during an active EBV infection, it could work within days (in theory) but if the infection is long gone (in my case it was mono/EBV in 2012 & second/final infection in 2013) and now I am left with the autoimmune dysfunction, then RTX could take 6 months or more to improve symptoms?

I would guess so.

 

[Gingergrrl]

Thanks @Hip, and I know this topic is all so new! I appreciate the info.

 

[SK2018]

@Woolie Do you understand what is meant by plasma B cells versus memory B cells? (I am sure you do and it is probably something very basic)! I've been trying to research this from another thread where Shawn was discussing using cyclo for the plasma B cells vs. RTX for the memory B cells? I was wondering if you (or anyone) could explain this in very dumbed down terms for me ! And I agree with you guy's theory that the illness for me (whatever we eventually call it) started off viral but then turned autoimmune.

Plasma cells are B cells that secrete antibodies, memory b cells are long lived mature B cells that remember what antibodies to keep on producing.

RTX hits B cells and memory B cells that express CD20 but it's not so good at hitting plasma cells,Cyclo is.

 

[junkcrap50]

So, it would be a regular blood draw and then they extract and biopsy the B cells from that blood draw (looking for EBV or autoantibodies)? Is this something only at the research stage or is it done by a regular doctor? Am fascinated by this concept.

I do know you can stain cells for EBV and look under the microscope for ID. I'm sure is fairly easy for research labs to separate and isolate B-cells. However, for a "B cell biopsy" they'd probbaly want to run tests for a number of things inside the b-cells. So i'm sure they isolated them, then ran tons of tests on them.

 

[Gingergrrl]

RTX hits B cells and memory B cells that express CD20 but it's not so good at hitting plasma cells, Cyclo is.

@Shawn So RTX kills general B cells and memory B cells but not plasma B cells? What is the different between the first ones that you mentioned (the general ones) and the plasma ones? Is this why you are planning to do both RTX and Cyclo (in order to attempt to knock out every single B cell)?

Does your doctor in Asia give you any odds/percents re: the chances that the new B cells will grow back healthy vs. pathogenic (and continuing to create the same old autoantibodies as before treatment)?

However, for a "B cell biopsy" they'd probbaly want to run tests for a number of things inside the b-cells. So i'm sure they isolated them, then ran tons of tests on them.

@junkcrap50 Do you know if a "B cell biopsy" can be done outside of a research setting and if a regular doctor can order this test? No worries if you do not know.