• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Statins, EBV and B lymphocytes

Messages
3,263
Hi there,

The onset of my ME was acute EBV infection, so I've always suspected it played a causal role in my illness, and very likely a lot of other people's. On the Simmaron rising website, there's been some recent research support for the idea that in many of us, EBV sets up latency in our B lymphoctyes, and that when it gets an opportunity it goes into its lytic cycle, reproducing more EBV to infect new cells (maybe PWMEs have more infected B cells than healthy people, or maybe we're less good at keeping the virus latent.) A the start of the lytic phase, the virus produces early proteins that initiate a sickness reaction that's ME to a tee. A the same time, it also messes with our immune defense system in general, so could also be responsible for all those other herpes viruses banging around in our system:

http://simmaronresearch.com/2014/03/1591

According to this view, drugs like rituximab might work by killing off a whole lot of the EBV-infected B lymphocytes, so they can then be repopulated by new healthy ones. But its a blunt instrument, and doesn't distinguish well between good B cells and bad ones.

I found this article the other day that suggests statin drugs, such as simvastatin, may have a more selective effect on just the EBV infected B cells. http://www.pnas.org.helicon.vuw.ac.nz/content/101/14/4960.long http://www.nature.com.helicon.vuw.ac.nz/bjc/journal/v92/n9/full/6602561a.html T

These studies are all done in a petri dish, but there's some clinical reports that including statins in the treatment of EBV-related cancers may actually have a clinical benefit:
http://public-files.prbb.org/publicacions/f5c78ee8-96d3-4854-8425-5f7f0dfa8960.pdf

It occurred to me that these drugs might work well when taken alongside a conventional antiviral. That way, the antiviral can do its job in ensure no new cells are infected (so your EBV etc load eventually does down but it takes ages), but the stain might actually help get rid of some of the latently infected B cells too, which seem to be the ones causing the immediate symptoms.

I'm interested in giving these statins a go, but wanted to ask if anyone else had tried them, or even heard mention of them?
 
Last edited:
Messages
15,786
@Woolie - ME/CFS patients tend to do very very badly with statins. They tend to do a lot of damage, to the mitochondria if I recall correctly. There are even reports of statins triggering disease onset.
 
Messages
3,263
@Woolie - ME/CFS patients tend to do very very badly with statins. They tend to do a lot of damage, to the mitochondria if I recall correctly. There are even reports of statins triggering disease onset.
Oh damn, sounded like such a great idea, I suppose there had to be a catch. Would still like to hear though from anyone who knows any articles or who has taken these themselves.

Thanks, Valentijn.
 

Countrygirl

Senior Member
Messages
5,429
Location
UK
Woolie, statins gave me huge relapse and I became almost bed bound for three months as a result.Never again, despite having a cholesterol level of 9.2.

C.G.
 
Last edited:

AndyPandy

Making the most of it
Messages
1,928
Location
Australia
Oh damn, sounded like such a great idea, I suppose there had to be a catch. Would still like to hear though from anyone who knows any articles or who has taken these themselves.

Thanks, Valentijn.
I believe that a bad reaction to statins played a key role in me developing severe ME/CFS which left me pretty much bedridden for around 12 months. I am still severely disabled with ME/CFS.
 

maryb

iherb code TAK122
Messages
3,602
Location
UK
Woolie, statins gave me huge relapse and I became almost bed bound for three months as a result.Never gain, despite have a cholesterol level of 9.2.

C.G.

Min is climbing, from 6 to 7 now 8.2. Have you found any way of dealing with it?
I'm gluten, dairy, sugar free so how the hell?? Cook everything from scratch.
No processed food........
 

Countrygirl

Senior Member
Messages
5,429
Location
UK
="maryb, post: 470049, member: 436"]Min is climbing, from 6 to 7 now 8.2. Have you found any way of dealing with it?
I'm gluten, dairy, sugar free so how the hell?? Cook everything from scratch.
No processed food.......

Hello Maryb :hug:

No, I just don't think about it. As a consequence of the high readings my GP has hysterically drawn large red stars on my paper record. If only he had cared a fig about the fact that I had been mostly bed/house bound for 35 years.

I wonder if hypercholesterolemia correlates with ME in some way?
 

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
Statins for me Ive found are extremely bad! I suspect that is due to them affecting the mito. I was left completely unable to think by them, couldnt function at all on them. So my very high cholestrol remains untreated.
 
Messages
3,263
Thanks, all, for your info. I had a wee Google and there is much discussion, especially in the FM forums, about statins being a contributor to the syndrome, especially to muscle pain (which is apparently a known side effect of them). The only person who seems to have picked up on the article I mentioned above is Dr. Teitelbaum:

http://www.psychologytoday.com/blog...ng-new-discovery-in-treating-cfs-fibromyalgia

He suggests statins might be used therapeutically in some PWMEs, but only if a virus is clearly implicated and only if CoQ10 is taken as an adjunct (he sets out a few other requirements). But still not keen to go out and try it now that I've heard from all of you.
 
Messages
3,263
Hello Maryb :hug:

No, I just don't think about it. As a consequence of the high readings my GP has hysterically drawn large red stars on my paper record. If only he had cared a fig about the fact that I had been mostly bed/house bound for 35 years.

I wonder if hypercholesterolemia correlates with ME in some way?
Countrygirl1, I find this hilarious, the way the medical system seems unmoved by our severe chronic illnesses, and yet they completely freak out about relatively minor - but very easily verifiable - conditions. I recently broke my arm, and the whole NZ health system ground into action on my behalf. Gee, thanks for all the sympathy and follow ups and advice and physio, but its only a broken arm, for heaven's sake. That's nothing, compared to what we go through on a daily basis.

(actually, ME makes you very pain tolerant I think, a broken bone was just such a minor thing for me - a tiny bit sore is all).
 

maryb

iherb code TAK122
Messages
3,602
Location
UK
Hello Maryb :hug:

No, I just don't think about it. As a consequence of the high readings my GP has hysterically drawn large red stars on my paper record. If only he had cared a fig about the fact that I had been mostly bed/house bound for 35 years.

I wonder if hypercholesterolemia correlates with ME in some way?


yes it is linked somehow - Dr Myhill explained it to me once but I've forgotten what she said.

My GP gaily said (yes she does speak in a sing song voice) I've looked it up and you have a 1 in 3 chance of having a heart attack within the next 5yrs - do you want to take statins, no - okay goodbye..........