Active Epstein-Barr Infections Found in Large ME/CFS Study

[godlovesatrier]

@gbells I found efficacy was between 20 and 30% myself as well. However i didn't know why. This is really interesting stuff gbells! What herb are you going to Try? Be interesting to see if I've already given it a go. I couldn't find anything that was very strong for entereoviral infection. Apart from black soy bean. But potency was a problem sadly even with tincture.

 

[gbells]

@gbells I found efficacy was between 20 and 30% myself as well. However i didn't know why. This is really interesting stuff gbells! What herb are you going to Try? Be interesting to see if I've already given it a go. I couldn't find anything that was very strong for entereoviral infection. Apart from black soy bean. But potency was a problem sadly even with tincture.

You haven't tried it. There is no mention of it in the literature. Everyone is focusing on oxymatrine so nobody thought to try it or that oxymatrine would inhibit apoptosis. I don't want to name until I can test it. However the research shows it actually improves caspase-3 response so definitely ramps up apoptosis. However, given I have massive herxing already I'm not sure that I need it. Willing to try it and see the effect. These viruses are toast. Took 12 years of research but finally nailed it.

Without following the same treatment regimen, exercises and supplements it probably won't work anyway and you'll just be stuck in partial, arrested apoptosis which wastes money and raises your cancer risk. I don't want to get people taking these supplements unless they follow the entire regimen. Apoptosis is no joke. It is painful so you have to have your pain management regimen ready and not go faster than you can handle. If you have an immune disorder (I have lupus SLE) you have to have the immune response well controlled not to flare and cause excessive autoimmune response. Another problem is that there is a large list of prohibited supplements/foods that inhibit apoptosis. You also have to deal with hypertension from nicotine using a drug that won't block apoptosis which the most common ones do. And you need great nutrient sensing to dose and manage the supplements otherwise you can tox out from overdose.

That is why I test these herbs individually when adding to the regimen to see what reaction(s) they cause.

 

[godlovesatrier]

Brilliant. Well done on the find. Can't wait to hear what it is.

 

[Hip]

So end result is that the caspase-3 blocking effect of oxymatrine will work against recovery/apoptosis even if you don't already have it from another virus.

According to this study and this, oxymatrine promotes apoptosis through caspase-3 and caspase-9 pathways.

Could it be that the studies you read which show oxymatrine inhibits apoptosis might relate to virally-infected tissue? If so, you have to be careful about interpreting results, because it may be that by its antiviral effects, oxymatrine inhibits the infection, and this in turn would automatically reduce apoptosis.

Apoptosis arises from the immune response to infection, so if the infection is reduced by an antiviral, then the apoptosis is going to be reduced also. In fact sometimes studies gauge the efficacy of an antiviral via its ability to reduce cell death in an infected cell line.

 

[gbells]

According to this study and this, oxymatrine promotes apoptosis through caspase-3 and caspase-9 pathways.

Could it be that the studies you read which show oxymatrine inhibits apoptosis might relate to virally-infected tissue? If so, you have to be careful about interpreting results, because it may be that by its antiviral effects, oxymatrine inhibits the infection, and this in turn would automatically reduce apoptosis.

Apoptosis arises from the immune response to infection, so if the infection is reduced by an antiviral, then the apoptosis is going to be reduced also. In fact sometimes studies gauge the efficacy of an antiviral via its ability to reduce cell death in an infected cell line.

We are talking about trying to incude apoptosis of virally infected tissue @Hip. What I am seeing in the research is that multiple studies show in non-cancerous tissue caspase-3 is inhibited.

Liu's study was retracted and Zhang found the opposite effect (caspase-3 inhibition by oxymatrine) in 2017. [Zhang X, Jiang W, Zhou AL, Zhao M, Jiang DR. Inhibitory effect of oxymatrine on hepatocyte apoptosis via TLR4/PI3K/Akt/GSK-3β signaling pathway. World J Gastroenterol. 2017;23(21):3839-3849. doi:10.3748/wjg.v23.i21.3839]

So multiple studies show that OMT inhibits caspase-3 in non-cancerous tissue and thus blocks apoptosis. There is also evidence of a neuroprotective effect by increasing Nitric Oxide which is an anti-oxidant that works against apoptosis.

“OMT preconditioning down-regulated apoptosis of hepatocytes and ameliorated pathological changes in liver tissue. The levels of AST, ALT, TNF-α and IL-1β in the model group increased significantly, and were significantly reduced by OMT pretreatment. OMT pretreatment down-regulated expression of TLR4 and active caspase-3 and the Bax/Bcl-2 ratio, and up-regulated expression of P-AktSer473 (Akt phosphorylated at serine 473) and P-GSK3βSer9 (glycogen synthase kinase 3β phosphorylated at serine 9) induced by LPS/D-GalN.”" [Zhang X, Jiang W, Zhou AL, Zhao M, Jiang DR. Inhibitory effect of oxymatrine on hepatocyte apoptosis via TLR4/PI3K/Akt/GSK-3β signaling pathway. World J Gastroenterol. 2017;23(21):3839-3849. doi:10.3748/wjg.v23.i21.3839]

“OMT upregulated the ratio of Bcl-2/Bax and downregulated the level of caspase-3.”" [Dong P, Ji X, Han W, Han H. Oxymatrine attenuates amyloid beta 42 (Aβ1-42)-induced neurotoxicity in primary neuronal cells and memory impairment in rats. Can J Physiol Pharmacol. 2019;97(2):99-106. doi:10.1139/cjpp-2018-0299.]

Another thing that prevents apoptosis increased anti-oxidant production in non-cancerous cells.

[Zhao P, Zhou R, Li HN, et al. Oxymatrine attenuated hypoxic-ischemic brain damage in neonatal rats via improving antioxidant enzyme activities and inhibiting cell death. Neurochem Int. 2015;89:17-27. doi:10.1016/j.neuint.2015.06.008].

[Wu B, Yue H, Zhou GH, et al. Protective effects of oxymatrine on homocysteine-induced endothelial injury: Involvement of mitochondria-dependent apoptosis and Akt-eNOS-NO signaling pathways. Eur J Pharmacol. 2019;864:172717. doi:10.1016/j.ejphar.2019.172717]

“Autophagy has been better studied in ischemia/reperfusion (I/R) injuries, and previous work showed that Oxymatrine (OMT), a quinolizidine alkaloid, protects cells against myocardial I/R injury by inhibiting autophagy.”

[ Zhang Y, Zhang Y, Tang J, et al. Oxymatrine Inhibits Homocysteine-Mediated Autophagy via MIF/mTOR Signaling in Human Umbilical Vein Endothelial Cells. Cell Physiol Biochem. 2018;45(5):1893-1903. doi:10.1159/000487912]

In cancerous cells it causes apoptosis through oxidative shock. We have a dual effect-protects against apoptosis in injuries (NO) while inducing it in cancerous tissue which makes sense because it causes cell cycle arrest.

[Zhang. 2010. https://pubmed.ncbi.nlm.nih.gov/20124987/ ]

So my assertion that it shouldn't be used to treat ME viruses because it reduces caspase-3 and NO thus preventing apoptosis stands.

 

[Hip]

So my assertion that it shouldn't be used to treat ME viruses because it reduces caspase-3 and NO thus preventing apoptosis stands.

The studies you linked to certainly show that oxymatrine can reduce apoptosis. However, it is not clear if we can conclude from that that oxymatrine is unsuitable for treating viral infection.

Oxymatrine will have multiple actions in the body, and if the sum total of thees actions help clear certain viruses in empirical tests, then we can conclude it is useful for viral infection. Studies have shown oxymatrine is effective for treating hepatitis B virus infection.

 

[gbells]

Most people are infected with EBV so we aren't talking about just one virus. I wouldn't use oxymatrine.

 

[gbells]

@Hip Did Chia actually confirm rheumatoid arthritis with lab tests (rheumatoid factor)? I'm getting some acute deep neck pain but that's probably just apoptosis related. I'm wondering if it was just a false diagnosis.

 

[Hip]

@Hip Did Chia actually confirm rheumatoid arthritis with lab tests (rheumatoid factor)?

I have not got any further info, but I presume he did.

 

[gbells]

I have not got any further info, but I presume he did.

I wouldn't presume anything and it was never published. I emailed him the question.

 

[Hip]

I wouldn't presume anything and it was never published. I emailed him the question.

See this post for some info.

 

[JoeyJo]

I haven't read the entire paper ( only the abstract as the link is no longer working) but the findings didn't surprise me.

Lately I feel like what I actually have is a nasty strain of Epstein Barr Virus or a genetic inability to easily suppress it which has been mislabelled as Chronic Fatigue Syndrome.

Does anyone else feel this way? That what you're fighting is actually an on-going battle with EBV or some other virus?

To explain, this is an overview of my illness:

December 2010 - Came down with EBV. ALL the acute symptoms plus bloodwork tested positive for it.

October 2010 - Able to go for short walks three times a week, but still struggling with many symptoms like PEM, swollen glands in my neck, petechiae in my mouth, being unable to keep my head up, very socially withdrawn, unable to work or study etc. Diagnosed with Chronic Fatigue Syndrome by a condescending dinosaur of a Rheumatologist.

Felt that way until:

Jun-Aug 2013 - When all of my symptoms completely went away. The only two big things which changed were:
a) I started hormonal contraception. I read a study which suggested that hormonal contraception has had a protective affect against Coronavirus, so perhaps this had something to do with it?
b) I spent two months on the beach in Italy so maybe the huge dose of Vitamin D played a role? Either that or the fact I was finally away from a stressful home enviroment.

Between 2013 and 2020 I travelled around the world, was successful at university and climbed lots of mountains. Things I never could've dreamed of when I was sick.

I had no real symptoms during that period whatsoever (apart from insomnia which started in 2017) until November 2020 when the EBV annoyingly re-activated. Right now, I'm currently dealing with all of the same symptoms as the first time around.

That said, in a weird way I'm kind of grateful for the re-activation as it's pointed me towards this conclusion. What's more, knowing that it might be EBV at the bottom of it all and thus something I might be able to suppress again with the right cocktail of supplements & natural anti-virals, gives me more hope and more to work with than I had when handed a CFS diagnosis.

Sorry for the long post, this has just been on my mind a lot lately and I wondered if others also felt that we should change the way we look at CFS and that we should take more of an anti-viral approach to treatments?

 

[Wishful]

symptoms like PEM

Was that standard PEM, with a consistent delay such as 24 hrs, or just "feeling worse after exertion"? Other diseases, such as EBV might have symptoms that might be similar to ME, so mistaken diagnoses are probably fairly common.

I don't think that all PWME should assume that it's just a viral infection. A viral infection shouldn't switch state (full symptoms to full health) over a period of minutes or hours and then switch abruptly back again a few hours later, which is what my ME has done repeatedly, with different triggering agents (prednisone, cuminaldehyde and T2). If a person with chronic fatigue tests positive for an active viral infection, then antiviral treatments makes sense. If those same symptoms persist after the tests show no active infection, then alternative diagnoses, such as ME or post-viral fatigue should be investigated.

Hopefully, all you have is EBV with an abnormal sensitivity to it.

 

[JoeyJo]

Was that standard PEM, with a consistent delay such as 24 hrs, or just "feeling worse after exertion"? Other diseases, such as EBV might have symptoms that might be similar to ME, so mistaken diagnoses are probably fairly common.

I don't think that all PWME should assume that it's just a viral infection. A viral infection shouldn't switch state (full symptoms to full health) over a period of minutes or hours and then switch abruptly back again a few hours later, which is what my ME has done repeatedly, with different triggering agents (prednisone, cuminaldehyde and T2). If a person with chronic fatigue tests positive for an active viral infection, then antiviral treatments makes sense. If those same symptoms persist after the tests show no active infection, then alternative diagnoses, such as ME or post-viral fatigue should be investigated.

Hopefully, all you have is EBV with an abnormal sensitivity to it.

First time around I mostly had PEM with delay - when you feel like you're finally seeing some improvement, over-do it, then feel like you've been hit by a truck the next day and it takes a week or so to recover.

This time it's mostly feeling worse immediately after exertion. Possibly because I'm more aware of the need to 'pace' myself and so don't push it too far. Also because there's a lot more information available on EBV now so I've been able to read up and incorporate things ( such as natural anti-virals) that have worked for others.

I don't think EBV is something to be grateful for. It still took me 2.5 years to suppress it first time around and who's to say whether I'll ever beat it off again. Everything I'm battling with now is EXACTLY THE SAME as when I was diagnosed and dealing with 'CFS', I just know how to handle it better. I also still have the ongoing severe insomnia and sensitivities ( just like CFS pts) which after ruling everything else out, I believe have probably been caused by the virus running amok in my system.

I really do wonder if in a percentage of people EBV and CFS are not just the exact same thing and that those people haven't for whatever reason been able to put it into remission.

I'm writing this as I hope my experience will make other people who are struggling question their diagnosis and whether it could be pro-longed EBV in their case as well. This is in the hope that anti-viral and other EBV treatments which I only found out about myself recently thanks to a very lovely forum member ( despite having 'CFS' for 9 years) may offer them some much needed relief too. I say this, because I honestly wouldn't have questioned my CFS diagnosis had this EBV not re-activated.

 

[gbells]

Does anyone else feel this way? That what you're fighting is actually an on-going battle with EBV or some other virus?

Definitely. Early on with ME I did a self history tracing the things that preceded the ME and viruses stood out. EBV one year prior followed by HHV6 and coxsackievirus that triggered the ME. That's why I am a strong advocate for immunotherapy research.

 

[Reading_Steiner]

Lately I feel like what I actually have is a nasty strain of Epstein Barr Virus or a genetic inability to easily suppress it which has been mislabelled as Chronic Fatigue Syndrome.

December 2010 - Came down with EBV. ALL the acute symptoms plus bloodwork tested positive for it.

October 2010 - Able to go for short walks three times a week, but still struggling with many symptoms like PEM, swollen glands in my neck, petechiae in my mouth, being unable to keep my head up, very socially withdrawn, unable to work or study etc. Diagnosed with Chronic Fatigue Syndrome by a condescending dinosaur of a Rheumatologist.

Felt that way until:

Jun-Aug 2013 - When all of my symptoms completely went away. The only two big things which changed were:

Thats interesting, was your PEM consistent with other descriptions you have heard from others that consider themselves to have me/cfs ? for example acute cognitive dysfunction in response to short bursts of intense physical exertion that exceeds ones normal 'energy envelope', was it predictable and in cycles e.g. work all day cleaning or moving things around and then next day or 2 cant do much but lying down watch TV ?

Also did you experience what seems to be called crashes which is an exemption from the normal PEM pattern where your level of functioning suddenly drops and you experience different symptoms ( this experience probably varies a lot ). In contrast to PEM the 'crash' seems to develop by stress, immune triggering, or exercise over a long time, weeks rather than seconds, minutes or hours.

So far no researcher has proposed a biological mechanism for either the PEM or the 'crash'.

 

[Reading_Steiner]

First time around I mostly had PEM with delay - when you feel like you're finally seeing some improvement, over-do it, then feel like you've been hit by a truck the next day and it takes a week or so to recover.

Thats interesting because in the first month it felt similar to me, I would feel more energy and thought I was 'getting better' and then I would go cycling or something then the next day would feel dramatically more 'ill' again, it was different from PEM now where it feels less contrast. At that time it was sort of like medium PEM mixed with a light 'crash'. One of the things though I strongly remember where I knew that my body had changed was that I no longer felt and sort of 'happy energy feeling' 10 or 20 minutes into exercise, I just felt sort of dead.

At the time I knew I had a virus but couldn't pin it down specifically, the doctor said that there are thousands or hundreds of thousands of viruses in the world, most are unexplored, but I concluded that it was probably EBV, but I didn't have typical glandular fever symptoms ( extreme sore throat ), I think the blood test showed that EBV markers were high, but my memory is not good enough to be certain.

 

[wyva]

Lately I feel like what I actually have is a nasty strain of Epstein Barr Virus or a genetic inability to easily suppress it which has been mislabelled as Chronic Fatigue Syndrome.

Does anyone else feel this way? That what you're fighting is actually an on-going battle with EBV or some other virus?

My ME/CFS was triggered suddenly by Epstein-Barr and my symptoms were the worst in the first 1-2 years and better afterwards. Because it was a sudden onset, not gradual, I could tell when the infection ended (after 3 weeks) and ME/CFS started (well, it didn't just start, but basically most of my symptoms with mono just never went away). They felt somewhat different and I could tell when the acute phase ended. That's why I don't think in my case it is about fighting the same active virus. To me it feels I fought the virus, I won, but my immune system somehow keeps fighting it, a non-existent enemy, like Don Quijote. That may not be how it really works but it is how it feels to me.

However, first I thought it was just a normal "after-effect" of mono, because everyone in the mono forum that I frequented seemed to be similar to me and I googled that it is normal to feel like this for a few months, etc etc. A lot of ME/CFS people were regulars there, without realizing what they really had. They kept sticking to the mono forum. They were all like me, with sudden onset ME, all thinking it was just lingering mono symptoms that will go away eventually. And for some that actually happened, even after 1-2 years. Not for me, for me it has become much milder but the symtpoms stayed. It kind of feels like my immune system has calmed down a bit yet still stayed stuck.

This is my personal experience with EBV-induced sudden onset. I'm a member of different ME/CFS support groups and sometimes wonder if we are a different subtype altogether (I mean the sudden viral onset kind).

 

[Wishful]

I would feel more energy and thought I was 'getting better' and then I would go cycling or something then the next day would feel dramatically more 'ill' again,

That's was exactly my experience too. I'd feel the desire to go for a long ride, and then feel worse the next day. This was years before I knew about ME and PEM.

Everything I'm battling with now is EXACTLY THE SAME as when I was diagnosed and dealing with 'CFS', I just know how to handle it better.

Ah, but medical science and technology has advanced since then, so maybe this time around you can get a test to determine which viral strain you have, and a better treatment for it. Your doctor's knowledge may lag behind, but if you dig out the latest information, your doctor might be willing to write the appropriate referral or prescription.

 

[JoeyJo]

Apologies for my slow response everyone.. what were we saying about crashes? Haha. I don't even know what caused this latest 48hr one, possibly stress, fluctuating hormones, possible co-infection w/ strep or perhaps trying too many healing foods and supplements at once.

Fantastic to come back to so many responses, and to know that I'm not alone in thinking all of my problems are being caused by a virus still lurking around.

Definitely. Early on with ME I did a self history tracing the things that preceded the ME and viruses stood out. EBV one year prior followed by HHV6 and coxsackievirus that triggered the ME. That's why I am a strong advocate for immunotherapy research.

I cannot tell you how happy this makes me to know that someone else thinks this way. I'm just gobsmacked that I never considered it before. That I never thought to question that I might not have developed a second illness ( CFS) and that I was simply still fighting the original battle with EBV. To be fair, I was only 22 when I was diagnosed and hadn't heard of EBV or CFS back then; the internet wasn't what it is now, and every doctor I went to see kept dismissing all of my symptoms with a "it's just your CFS". I guess if someone tells you enough times you can start to believe anything. From now on though I've decided that I'm going to start referring to myself as an EBV long hauler, because the petechiae that keep appearing in my mouth certainly suggest an ongoing battle with an infection.

Thats interesting, was your PEM consistent with other descriptions you have heard from others that consider themselves to have me/cfs ?

Also did you experience what seems to be called crashes.

I'll be honest with you, I haven't read up on ME/CFS that much. Partly because there wasn't that much information around when I was diagnosed 9 years ago ( at least compared to what there is now), but also because I think if you spend a lot of time thinking about your illness it can make you feel worse and hopeless. I didn't want to accept that I would feel the way that I did for life, so I just avoided reading about it.

I definitely had both PEM and crashes. It's funny, as soon as I got better I blocked all of it out. I felt like I'd lost enough of my life ( 2.5 years) to feeling that way and I didn't want to waste another moment thinking about it. It got to the point where I could barely remember what I went through or how it felt anymore. Which is why I can't remember in great detail all of the events and triggers. Now, second time around, I'm being painfully reminded of exactly how it felt.

One of the things though I strongly remember where I knew that my body had changed was that I no longer felt and sort of 'happy energy feeling' 10 or 20 minutes into exercise, I just felt sort of dead.

Yes! I get what you mean. The change in how I feel whilst exercising since this EBV re-activated has been dramatic. In October 2020 I climbed a mountain with ease and excitement, then from November onwards, everytime I've walked more than 2km I start feeling inflamation in my adrenal/kidney area, start sweating buckets and feel completely unable to regulate my body temperature. That feeling of being ill just makes you want to go home, whereas before I'd stay out all day.

My ME/CFS was triggered suddenly by Epstein-Barr and my symptoms were the worst in the first 1-2 years and better afterwards. Because it was a sudden onset, not gradual, I could tell when the infection ended (after 3 weeks) and ME/CFS started (well, it didn't just start, but basically most of my symptoms with mono just never went away). They felt somewhat different and I could tell when the acute phase ended. That's why I don't think in my case it is about fighting the same active virus. To me it feels I fought the virus, I won, but my immune system somehow keeps fighting it, a non-existent enemy, like Don Quijote. That may not be how it really works but it is how it feels to me.

However, first I thought it was just a normal "after-effect" of mono, because everyone in the mono forum that I frequented seemed to be similar to me and I googled that it is normal to feel like this for a few months, etc etc. A lot of ME/CFS people were regulars there, without realizing what they really had. They kept sticking to the mono forum. They were all like me, with sudden onset ME, all thinking it was just lingering mono symptoms that will go away eventually. And for some that actually happened, even after 1-2 years. Not for me, for me it has become much milder but the symtpoms stayed. It kind of feels like my immune system has calmed down a bit yet still stayed stuck.

This is my personal experience with EBV-induced sudden onset. I'm a member of different ME/CFS support groups and sometimes wonder if we are a different subtype altogether (I mean the sudden viral onset kind).

That's really interesting that you got much better after the second year too. I wonder if that's just coincidence or if there's a reason why it improved for the both of us then. Did anything change for you around that time or did you do anything different that might have led to you seeing a decline in your symptoms?

I definitely get what you mean about there being an acute phase. This time around for the first few weeks I didn't have the energy to lift myself off the sofa and climbing the stairs felt like a real struggle. I felt very poorly. Whereas now, 12 weeks in to this re-activation, I'm starting to feel less 'sick' and more like myself again, but if I stand talking to someone for too long I still need to rest myself on a door-frame or prop my head up with my hand whilst on Skype. The changes to my throat and ability to exercise also make me feel as though there's a lingering infection, and I feel vulnerable to PEM and crashes once more.

Ah, but medical science and technology has advanced since then, so maybe this time around you can get a test to determine which viral strain you have, and a better treatment for it. Your doctor's knowledge may lag behind, but if you dig out the latest information, your doctor might be willing to write the appropriate referral or prescription.

Can you purchase tests which can distinguish between the different strains of EBV? My GP could only offer one blood test ( the one which shows if you've had it already), and that's a bit useless in my case because I know that I've had it already.

Also, as far as I'm aware there isn't any treatment for EBV in the UK as they don't prescribe anti-virals here. I was just told to rest, hydrate and to take vitamin D. Advice, which is probably fine for most people, but unhelpful to those like me who can't seem to shift it.