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

[gbells]

I see there are EBV results at the top, and at the bottom of the file. Both suggest you do NOT have an active infection (based on the most recent EBV interpretations you can find online). I don't know how old those EBV results are at the top, but looks like they're pretty old. And thus, are possibly less reliable. 2008 I think it says? Or 2002? Those are weird ranges...

HHV-6 - Looks like you have 7 fold increase in titres. HHV-6 Foundation says this suggest you "MIGHT" have an active infection. And since it looks like your test was ELISA, you probably will want to re-test and do IFA this time (via Quest Diagnostics or ARUP Labs or Focus, not LabCorp). I actually did both Labcorp's ELISA test and Quest's IFA test for HHV-6, just to be sure.

More info here: https://hhv-6foundation.org/patients/patient-faq

Your enterovirus titres look pretty low. Def wouldn't be overly concerned, at least based on those numbers. https://me-pedia.org/wiki/Enterovirus



Also, I would prob remove that pdf file and instead crop out just the results sections so you're not showing all of that personal info.

Do they even treat HHV6 these days? I'm not sure what the rationale for testing it would be if it wouldn't be treated.

 

[Treeman]

Do they even treat HHV6 these days?

I think in the UK it's an issue and treated in transplant people who have a suppressed immune system.

 

[Hip]

Here you are.

I don't think your enterovirus tests are valid:

Your coxsackievirus B tests were done in-house by LabCorp, using a test (this CF test I believe) which Dr John Chia finds is insensitive for detecting chronic enterovirus infections in ME/CFS patients.

So according to Dr Chia's enterovirus testing recommendations, you have not been properly tested for chronic enterovirus.


Dr Chia finds that only antibody tests using the neutralization method are sensitive enough to detect chronic enterovirus infections in ME/CFS patients. Dr Chia uses the ARUP lab antibody tests for coxsackievirus B and echovirus, which use the micro-neutralization method.

See this thread for more about enterovirus testing at ARUP Lab.

Antibody tests using methods such as ELISA and IFA are usually too insensitive, Dr Chia finds, for detecting chronic infections (these methods are OK for acute infections, when there is plenty of virus about, but not for chronic infections, when there is much less virus around).

And complement fixation testing (CF or CFT) antibody assays Dr Chia says are worthless for detecting chronic enterovirus. This I believe is the test you took.

Dr Chia says:

The typical antibody that the laboratory would do is called the complement fixation test, which is neither sensitive nor specific. That means if you get a positive test, it's worthless. And if you get a negative test, it's worthless. Well that's wonderful.

— Invest in ME Conference 2009, timecode 27:54

Neutralization is the gold-standard in terms of sensitivity for antibody testing.



If anyone has any suggestions for how this important info about enterovirus testings can be made more prominent on the forum, please post, as lots of ME/CFS patients are getting wrong enterovirus tests, and then incorrectly think they are negative for enterovirus when they may in fact be positive.

Since oxymatrine can be effective treatment for enterovirus ME/CFS, getting the wrong enterovirus test means you may miss out on this useful treatment.

 

[gbells]

Dr Chia finds that only antibody tests using the neutralization method are sensitive enough to detect chronic enterovirus infections in ME/CFS patients. Dr Chia uses the ARUP lab antibody tests for coxsackievirus B and echovirus, which use the micro-neutralization method.

Hip thanks for the info but the test was positive for enterovirus, it's not like it was negative. I can get oxymatrine supplement and self treat and see how it goes (it's on order from China). I'm not seeing what additional testing would accomplish for either HHV6 or enterovirus.

 

[Hip]

Hip the test was positive for enterovirus, it's not like it was negative. I can get oxymatrine supplement and self treat and see how it goes (it's on order from China). Not sure what additional testing would accomplish.

Dr Chia only diagnoses a suspected chronic enterovirus infection not just when the test result is positive, but when it is positive and the antibody levels are higher than a certain threshold (greater or equal to 1:160 in the ARUP tests).

So hard to know what your test results mean.

But the ARUP lab tests are expensive (around $440 I think), and it takes a bit of work to get them (because LabCorp are rather incompetent at sending blood samples to ARUP for testing).


So it may just be easier to do what you suggest, and just try out some oxymatrine (this is not advised though if you have any autoimmune issues, or you close family have autoimmune diseases). Some oxymatrine sources:

Equilibrant • Alt Med Solutions • Better Life • Alchemist Lab • Organic Pharmacy • Chinese Herbs • Acu Atlanta • Max Nature • Biomed

 

[gbells]

So it may just be easier to do what you suggest, and just try out some oxymatrine (this is not advised though if you have any autoimmune issues, or you close family have autoimmune diseases).

Why exactly? I do have lupus.

 

[Hip]

I do have lupus.

Dr Chia's advice is not to risk oxymatrine if you have autoimmune diseases. He found some people with existing autoimmune diseases developed rheumatoid arthritis after going on a course of oxymatrine.

 

[gbells]

Dr Chia's advice is not to risk oxymatrine if you have autoimmune diseases. He found some people with existing autoimmune diseases developed rheumatoid arthritis after going on a course of oxymatrine.

I researched it. Actually oxymatrine is a caspase 3 apoptosis inhibitor which worsens autoimmune disease. It is exactly the opposite effect I wanted in this supplement. It only helps apoptosis against growing cells (cancer) and for bocavirus.

Another dead end. Every supplement that was mentioned on Me-pedia was ineffective. That's what happens when I take short cuts and don't research before ordering.

 

[Hip]

Another dead end. Every supplement that was mentioned on Me-pedia was ineffective.

Dr Chia's informal study on 200 patients showed oxymatrine to be often effective for enterovirus ME/CFS. And people on this forum have benefitted, so not a dead end for them.

 

[godlovesatrier]

I should say that I've been using the traditional medicine Andrographis Paniculata for a long time. It has numerous actions on latent and lytic ebv. I don't have the energy to do a full write up sadly. But I am currently taking the max dosage anyway and the effects are meant to be fairly full on in terms of disrupting ebv from replicating in the lytic state.

 

[gbells]

Dr Chia's informal study on 200 patients showed oxymatrine to be often effective for enterovirus ME/CFS. And people on this forum have benefitted, so not a dead end for them.

I'd have to finish treating the HHV6 as the supplements oppose each other and then do the equibrilant regimen.

 

[Hip]

I'd have to finish treating the HHV6 as the supplements oppose each other and then do the equibrilant regimen.

You might want to consider that carefully, as it would be bad news if oxymatrine triggered rheumatoid arthritis. Especially as you don't even know you have active enterovirus.

In my case, my mother has an autoimmune disease, and I had some psoriasis which is autoimmune, so in principle I should not have taken oxymatrine, as there is autoimmunity in the family and myself.

But I decided to risk it. Unfortunately it did not help my coxsackievirus B4 ME/CFS; but at least it did not trigger RA.

 

[gbells]

You might want to consider that carefully, as it would be bad news if oxymatrine triggered rheumatoid arthritis. Especially as you don't even know you have active enterovirus.

In my case, my mother has an autoimmune disease, and I had some psoriasis which is autoimmune, so in principle I should not have taken oxymatrine, as there is autoimmunity in the family and myself.

But I decided to risk it. Unfortunately it did not help my coxsackievirus B4 ME/CFS; but at least it did not trigger RA.

I don't think that 2/500 risk of RA is that big of a deal. 0.4%

I analyzed Dr. Chia's Equilibrant formula and there are a few problems with it. His goal is the same as what I've been doing with HHV6, trigger apoptosis. The main ingredient is Sophora root and its mechanism is through cell phase arrest. He is including some things that work against apoptosis though: olive leaf and vitamins D and A which need to be dropped from the treatment. Olive leaf is another strong anti-oxidant (blocks apoptosis) with a mechanism that blocks viral replication but that isn't necessary if you have good antibody response. These bad ingredients could be the reason why he had to run treatment so long (1 year). I'm going to purchase some high quality standardized supplements for the rest and give it a run when I get the Sophora from China. It will be easy to see if its triggering additional apoptosis in the coxsackie B cells from the inflammation response. One useful point Chia made was the location of the tender points. I have had a pos right lower quadrant tenderness (McBurney's point) that nobody could figure out for years. In light of the cox IgG pos it's probably from coxsackievirus.

Also, Sophora has the opposite effect on cell growth as Peu D'Arco so those can't be taken at the same time.

I'm also rather pissed off at my past integrative doc who basically wasn't aware of Chia's protocol and had me use a poor quality Astralagus tincture that accomplished nothing.

 

[godlovesatrier]

Hip's got a good point about auto immunity. I've got arthritis of both kinds in my immediate family and then chrons as well, including a variety of bowel problems. Oh and diabetes as well. So that was just another reason I decided to stop it. Just in case it's helpful thought I'd add my own experience.

 

[gbells]

Hip's got a good point about auto immunity. I've got arthritis of both kinds in my immediate family and then chrons as well, including a variety of bowel problems. Oh and diabetes as well. So that was just another reason I decided to stop it. Just in case it's helpful thought I'd add my own experience.

A researcher said that impaired apoptosis from viruses causes autoimmunity so allowing it to complete may cure same diseases.

Autoantibodies may be detected in a variety of viral illnesses including hepatitis A, B, and C, parvovirus B19, enteroviruses, cytomegalovirus (CMV), and Epstein-Barr viruses (EBV) [1, 7, 8, 9, 10, 11]. Infectious agents have been implicated as an initial environmental trigger of AD in general, and in the induction of autoantibodies specifically [12, 13, 14, 15, 16, 17]. It has been suggested that transient autoimmune responses are induced by acute viral infections in children and adults. Such responses may include generation of transient autoantibodies of typically low titer. The progression of such an immune state to an established autoimmune disease is rare [6, 18] as usually virally induced autoantibodies typically resolve with time. Hence, it may be difficult to differentiate autoimmune disease and self-limited illness.


...The mechanisms responsible for the generation of autoantibodies as a result of viral infections remain unclear. A few proposed mechanisms include cross-reactivity between viral proteins and autoantigens [19], molecular mimicry [16, 17, 20], and the induction of apoptosis of virus-infected cells [21], all leading to the production of autoantibodies. https://www.intechopen.com/books/autoantibodies-and-cytokines/autoantibodies-in-viral-infections

 

[sometexan84]

Many healthy controls have EBV re-activations and no symptoms of ME/CFS or EBV. As shown in the study you posted. 32% of healthy controls were also positive for EBV (EA). As healthy controls they would not have symptoms of EBV or ME/CFS.

@ljimbo423 I know you've been very concerned w/ this for a while. Hopefully this will help.

Check out the bottom part of this message here - https://forums.phoenixrising.me/threads/do-you-have-an-active-ebv-infection-poll.80830/#post-2288658

 

[gbells]

@ljimbo423 I know you've been very concerned w/ this for a while. Hopefully this will help.

Check out the bottom part of this message here - https://forums.phoenixrising.me/threads/do-you-have-an-active-ebv-infection-poll.80830/#post-2288658

I think it depends on how many cells get infected while you have the active EBV and whether you can mount a successful immune response. Co-infections probably greatly increase this which makes the viruses very entrenched and immunosuppressing. Stress, corticosteroids and co-infections before antibodies are generated are probably the reason why some people get ME and others don't. So ME is basically a virally induced immunosuppression that overwhelms the body. I bet it is the reason why people aren't generating antibodies to covid after they get infected.

 

[tonteldoos]

Indeed.

I've been on Valacyclovir for 2 1/2 months now. It should be another 3 months-ish before I know if it's working. But I did have a Herx-like reaction 5-6 wks into taking it, which is a good sign that it is working.

Started on Azithromycin (Zithromax) 6 days ago, for Chlamydia pneumoniae and Streptococcus infections. This is just a 1 or 2 month treatment. Today I actually feel abnormally weak and tired. I think it's either Herx-like reaction from the Azithromycin or from the Magnesium Malate supplement I just started on.

Hey sometexan84 - that is a coincidence. I have also been on Valaciclovir for the same time. Nearing the 3 month point. Really hope it makes a difference in the long run.

 

[sometexan84]

Hey sometexan84 - that is a coincidence. I have also been on Valaciclovir for the same time. Nearing the 3 month point. Really hope it makes a difference in the long run.

Right on. I'll be 3 months in on 8/5/20. It's going well.

 

[gbells]

@Hip re: chia trying to stimulate innate immune response (Th1) with oxymatrine and the apoptosis necessity for ME. I looked it up and Th1 also triggers apoptosis/cells death so the goal is the same.

RNase L is present in small quantities during the normal cell cycle. When interferon binds to receptors on the cell membrane, it triggers the production of more RNase L along with 2'-5' Oligodenylate Synthetase (OAS). OAS converts ATP to pyrophosphate and 2'-5'linked oligoadenylates. The 2-5 A molecules bind to RNase L and activates it. The activated RNaseL destroys all cellular and viral RNA, which triggers autophagy and programmed cell death.

https://me-pedia.org/wiki/Ribonuclease_L

I think one problem ME patients have are multiple viruses that block antibody response. So they are unable to generate antibodies and even if they had them they can't effectively trigger apoptosis because the pathways are suppressed. So chia figured try to salvage the cells rather than stimulate apoptosis however apoptosis is preferable if they are infected with EBV and other DNA viruses. Interestingly, ME patients with EBV have suppressed ribonuclease production to they don't repair cells well anyway.

Several abnormalities of the 2-5A/RNaseL pathways have been documented in chronic fatigue syndrome patients and previously had been suggested a potential diagnostic biomarker. Studies of peripheral blood mononuclear cells have found that the RNase L and 2-5 A pathways are dysregulated,[1] with abnormally high levels of the active form of 2-5 A.[2] RNase L proteins of the molecular weights 80, 42 and 37 kDa have also been found.[3]

https://me-pedia.org/wiki/Ribonuclease_L

And

2',5'-Oligoadenylate synthetase (OAS) enzymes and RNase-L constitute a major effector arm of interferon (IFN)-mediated antiviral defense. OAS produces a unique oligonucleotide second messenger, 2',5'-oligoadenylate (2-5A), that binds and activates RNase-L. This pathway is down-regulated by virus- and host-encoded enzymes that degrade 2-5A.

https://me-pedia.org/wiki/Ribonuclease_L

So the pathway for innate immune response (TH1) triggers interferon which also causes apoptosis.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3624694/#:~:text=Discovered as antiviral cytokines, interferons,death, better known as apoptosis.

Vertebrates respond to viral infection by inducing IFNs, which trigger antiviral defenses through IFN-stimulated gene (ISG) expression.

I found the culprit, Epstein Barr Virus (which is common in ME patients) is one cause of RNase-L 2-5A inhbition. I am not surprised. Also genetically some people have less effective RNase 2-5A response.

Mutations in RNASEL segregate with the disease in prostate cancer families and specific genotypes are associated with an increased risk of prostate cancer. Infection by human papillomavirus (HPV) is the major risk factor for uterine cervix cancer and for a subset of head and neck squamous cell carcinomas (HNSCC). HPV, Epstein Barr virus (EBV) and sequences from mouse mammary tumor virus (MMTV) have been detected in breast tumors, and the presence of integrated SV40 T/t antigen in breast carcinomas correlates with an aggressive phenotype and poor prognosis.

https://pubmed.ncbi.nlm.nih.gov/18575592/

So our common denomenators for ME development are exposure to multiple viruses and EBV, which is aggravated if you have a defective 2-5A response.

So apoptosis stimulation is necessary after all which is why oxymatrine is a bad supplement because it works against apoposis.

I've found that stimulating multiple apoptosis pathways together is necessary so you reach the tipping point that overcomes viral inhibition. 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. I think you mentioned some kind of repair system that would not require apoptosis however I think given the Th1 apoptosis promoting effect that this probably not a good treatment approach and is why the percentage of patients reaching cure is so low (30%). I found an alternative herb to try that has the same effect as oxymatrine without the caspase-3 inhibition and will be testing it in a few days.

It is a little tricky managing multiple supplements simultaneously (I am literally managing 30 different chemicals/supplements/drugs plus all normal dietary foodstuffs) and it requires a lot of high level appetite sensing. I found that grouping them together by effect helps. I label supplements with different colored stickers based on treatment mechanism: apoptosis for EBV (green), apoptosis stimulation for coxsackie (blue), longevity/energy (yellow).

(This post took a serious amount of research)