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EBV Reactivation Testing UK

Messages
54
Does anyone know if NHS GPs will test for EBV reactivation?

Or if there are any private clinics in the UK which offer the Epstein-Barr Virus Early Antigen ( EBV EA) test?

Only what I'm dealing with right now feels exactly like the illness I had when I was first diagnosed with EBV 10 years ago. I appreciate that EA tests aren't the most reliable but it'd be nice to have some kind of record of this sudden and sharp decline.
 

keepswimming

Senior Member
Messages
339
Location
UK
My GP retested me for EBV.

EBV triggered my CFS. When I went back to my GP 10 months after the initial infection, because the fatigue hadn't improved, he did a lot of tests to rule out possible causes, and included in that was a retest for EBV. The initial test came back positive so then he did further tests. Altogether he tested for EBNA, igG, igM and PCR.
 
Messages
54
Update for anyone wondering the same thing... I spoke to my GP in Wales today and she seemed to think that they can't offer tests for reactivation and that they can only provide the one which shows if you've had it at some point. At the same time she admitted didn't know that much about the various tests, so it's possible it's available on the NHS but it appears unlikely.
 

keepswimming

Senior Member
Messages
339
Location
UK
Update for anyone wondering the same thing... I spoke to my GP in Wales today and she seemed to think that they can't offer tests for reactivation and that they can only provide the one which shows if you've had it at some point. At the same time she admitted didn't know that much about the various tests, so it's possible it's available on the NHS but it appears unlikely.

Sorry to hear this. Seems strange as surely the test they need for reactivation would be the same as for the initial infection, which I'm sure they test for? (I'm no expert though).
Perhaps it depends on the doctor. I will say, I'm very fortunate with my GP, he's the best and most thorough doctor I've ever come across.
 
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54
Sorry to hear this. Seems strange as surely the test they need for reactivation would be the same as for the initial infection, which I'm sure they test for? (I'm no expert though).
Perhaps it depends on the doctor. I will say, I'm very fortunate with my GP, he's the best and most thorough doctor I've ever come across.

From what I understand, the only test that my GP could offer would tell you whether you've had it at some point, whether that be 20 years or 2 weeks ago. It can't tell you whether the infection is recent. So there was no point in me taking it as I had a positive result 10 years ago. I guess they only provide that one as for most people the first occasion is the only time they have it so it's a pretty good indicator of initial infection.
 

keepswimming

Senior Member
Messages
339
Location
UK
I'm trying to remember the details of my own tests! The problem is I'm no expert, I'm just drawing on my own experience... I thought one of the antibody tests (igM??) should only be positive for a year after infection and then becomes negative. And I think the PCR test is meant to flag a current active infection in your blood, not past infection..?

When I had the PCR blood test I got the feeling it was quite an unusual test, the surgery had to send it to a hospital further away as none of the local hospitals did it.

I wonder if @Hip has any thoughts on this?
 

Hip

Senior Member
Messages
17,995
Does anyone know if NHS GPs will test for EBV reactivation?

Or if there are any private clinics in the UK which offer the Epstein-Barr Virus Early Antigen ( EBV EA) test?

In terms of trying to figure out whether active EBV might be involved in your ME/CFS,

Lerner says active EBV infection = high VCA IgM and/or high EA IgG diffuse. Refs: 1 2

Prof Montoya had his own EBV criteria, with active infection indicated by high EBV VCA IgG and EBV EA IgG (but he also required high HHV-6 IgG). Refs: 1 2


PCR testing is not often used by ME/CFS doctors, but it you are positive for PCR, then this is an active infection.


The Doctors Laboratory (In London and Manchester) offers some EBV tests privately.



Other viruses linked to ME/CFS which ME/CFS specialists will test for are: coxsackievirus B, echovirus, cytomegalovirus, HHV-6 and parvovirus B19.

In the UK, we do not have sufficiently sensitive tests to detect chronic coxsackievirus B and echovirus infections in ME/CFS, but you can find labs abroad which do.
 
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Messages
66
How would you test for echo virus, enter and coxackie outside UK?

I've tested
echo virus - negative dna
Enterovirus - negative dna, negative IGM
Coxackie a and b - negative IGM.

Is it highly unlikely that they aren't the problem? I have reactivation of EBV with igm so trying to hone in on the right viruses but it's all so confusing, especially in the UK where they dont really buy in to chronic infection
 

Hip

Senior Member
Messages
17,995
How would you test for echo virus, enter and coxackie outside UK?

It's a bit of a palaver: there are labs in Germany and Greece which you can send your serum sample to for CVB and echovirus antibody testing by the sensitive neutralization method, but it takes a bit of work. Those labs are detailed in the coxsackievirus B and echovirus section of my roadmap.

Viruses will typically be negative by blood PCR testing in ME/CFS, as there is usually little virus in the blood in ME/CFS. But negative enterovirus PCR tests do not rule out chronic enterovirus infection.

PCR tests are generally not used for ME/CFS viral testing, as a negative result does not rule out a chronic infection, according to ME/CFS specialists. It is antibody tests which are normally used in ME/CFS.

Negative enterovirus by antibody tests which are not by the neutralization method does also not rule out chronic infection, according to Dr Chia. Enterovirus is a hard virus to detect, so requires the most sensitive antibody testing, which is the neutralization method. Other methods like ELISA, IFA and CFT are not sensitive enough for enterovirus, says Dr Chia (though these are fine for other viruses).

The symptoms of the initial acute infection can also give some clues as to which virus you caught. What were your acute symptoms?



I have reactivation of EBV with igm

According to Dr Lerner's criteria, elevated EBV VCA IgM signifies chronic infection in ME/CFS patients. So EBV might be the culprit in your case. Though ME/CFS patients can have more than one active viral infection.
 
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Messages
66
My original symptoms were
Started getting sweats and losing appetite felt a bit tired.
Carried on working and excercising buy noticed I would start to sweat even though I wasn't exerting but body temp returned to normal after exertion.
I worked out on day before acute onset for 2 hours on my legs and felt awful but pushed through however the next day I had the following
-Rapid heart rate
-Insane insomnia(went from sleeping like a bear to unable to sleep at all overnight for at least to or 3 months with this strange electricity feeling passing through me almost tremoring and jolting me moments before passing into a sleep state or waking up.. I had night sweats and nightmares and woke every morning with tremors and palpitations and really bad nausea which ebbed and flowed all day.
-sore throat which ebbed and flowed for about 3 to 4 months
-itchy eyes
- minor congestion but no mucous all dry throat and stuffy nose
-headache
-severe fatigue, going from extremely active to unable to walk or talk to anyone without feeling utterly exhausted, even texting was impossible.. Step count dropped from 10000 day before to 1000 or less for a few weeks and hasn't really gone above 2000 without backlash
-PEM very early on, started trying to rehab wk 4 and by end of week I was back in bed with worsening symptoms and felt unable to stand up. PEM has become worse despite resting.
-loss of appetite to the point of feeling ill looking at food, even my favourite foods. As a bodybuilder I would typically eat 5000 calls a day and I couldn't even face a salad.
My appetite hasn't returned fully its about 50%
-i had morning sickness and stomach pain for 4 months, that went for 2 months and comes back every time I relapse (feels more like a sickness response or high lactic acid rather than viral but who knows)
-loose bowels that changed in colour from normal to runny, to yellow to back to normal throughout the illness and occasional flares now (although 95% normal currently)
- stiff finger joints since day 1 and still have them now, feels like an immune response thing but I've never had it before.. Also negative ANA
-some post Nasal drip but I noticed that more in summer time which could have been mild allergies

I had surgery on my chest in February and felt rough after, I was thinking that either I was unlucky and caught covid or another pathogen or this is very much an ebv reactivation caused from the stress of the surgery and the opportunity to take advantage of the lowered immune system.

My GI system is OK but I have had to modify my diet to a low carb paleo to balance gut and my appetite is still pretty poor in comparison... I am however very sick and only out of bed for a few hours a day at most so my activity is barely 2k steps, lately more like 1k...

My gut is telling me reactivated ebv but the more I read the more confusing it is, I'd like to rule out EVs as they seem the most troublesome and I don't feel like my previous history of onset correlate with EV..

Open to thoughts /ideas...
 

Hip

Senior Member
Messages
17,995
sore throat which ebbed and flowed for about 3 to 4 months

That's interesting. The coxsackievirus B4 virus I caught in London in 2003, and which spread to all my friends and family, often would cause a sore throat which would either last many months before clearing up, or would never fully go away. This occurred not only in me, but also in people who caught my virus and did not develop ME/CFS.

Recurrent stomach pain for months or years was also a symptom several people with my Coxsackie B4 virus reported. My virus would also sometimes trigger mental health symptoms like severe anxiety and depression in people. More info about my virus on my website.
 
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66
The onset was like nothing I've ever experienced, the whole experience was very aggressive apart from in the respiratory side so whilst the sore throat was bad I had no cough or breathing issues which is why I'm on the fence about covid... Covid presents so broadly that my cluster of symptoms aren't uncommon but I don't have antibodies (which again doesn't necessarily rule it out)

I'd like to know what I am up against, especially regarding coxackie /enteroviruses but given my ebv igm is raised I don't think a trial of valciclovir would be the worst idea in the world..

So hard to navigate this, being the wrong side of moderate and borderline severe leaves you feeling like you are on the ropes so your a bit limited by what you can do..

What are your thoughts on things like TA1 and other such immune system peptides? Some have mentioned interferon drugs as well as hiv drugs but I imagine those are far too heavy hitting and certainly not to be messed about with without a positive test for EVs
 
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66
Regardless of the virus, from everything I have obsessively consumed in the last few months points towards the body putting us in this state absolutely for a purpose and likely driven by a viral infection smouldering away keeping the "sickness /danger response" switched on.

People who have recovered seemed to have done so with a concoction of antivirals and inflammation /immune modulators, I certainly haven't seen much evidence than simple rest /convalescence being that remarkable, definitely not in folks who fell straight into the deep end like myself..
 

Hip

Senior Member
Messages
17,995
I'd like to know what I am up against, especially regarding coxackie /enteroviruses but given my ebv igm is raised I don't think a trial of valciclovir would be the worst idea in the world..

That may be an idea, though Dr Lerner's studies show it can take 3 or 4 months before improvements even begin to manifest. And that's on high doses of Valtrex 1000 mg several times a day.



So hard to navigate this, being the wrong side of moderate and borderline severe leaves you feeling like you are on the ropes so your a bit limited by what you can do..

I was also moderate bordering on severe for the first 6 years of my ME/CFS, and it does take much longer to organize anything when you are like this. Especially the steep learning curve of ME/CFS-related medical science.



What are your thoughts on things like TA1 and other such immune system peptides? Some have mentioned interferon drugs as well as hiv drugs but I imagine those are far too heavy hitting and certainly not to be messed about with without a positive test for EVs

When starting out looking at ME/CFS treatments, it's a good to try ones which have shown to be helpful. New and speculative treatments are also interesting, but the tried and tested ones may be a better place to start.

Treatments which have a track record of helping ME/CFS and which are employed by various ME/CFS doctors, or which have been shown effective in studies, include:

GENERAL ME/CFS TREATMENTS:
B12 methylcobalamin injections (or more conveniently, transdermal B12 oils)
Methylation protocol
Low-dose naltrexone (only works for around 10% of patients, but when it works, it works well)
Abilify (can make major improvements in ME/CFS)

ANTIVIRAL AND IMMUNE BOOSTING ME/CFS TREATMENTS:
Oxymatrine (antiviral immunomodulator) for enterovirus ME/CFS
Epivir for enterovirus ME/CFS
Valcyte (for EBV, HHV-6 or cytomegalovirus ME/CFS)
Valtrex or Famvir (for EBV ME/CFS)
GcMAF as transdermal cream, capsules or injections (immunomodulator)
Tenofovir (antiviral immunomodulator)

BRAIN FOG AND FATIGUE:
Piracetam (good supplement for brain fog)
Methylphenidate (stimulant drug for brain fog and fatigue)
Modafinil (stimulant drug for brain fog)

PEM:
Pyridostigmine (reduces or eliminates PEM)
D-ribose (to speed up PEM recovery)

GUT ISSUES:
Probiotics and prebiotics
Rifaximin (antibiotic for IBS, SIBO or gut dysbiosis)

EXPENSIVE AND HARD TO OBTAIN TREATMENTS:
Ampligen (antiviral immunomodulator) for enterovirus or herpesvirus ME/CFS
IVIG (works well if for pain)
Interferon beta for enterovirus ME/CFS (antiviral immunomodulator, benefits usually do not last)



See also: List of ME/CFS Recovery and Improvement Stories
 
Messages
54
I wonder if @Hip has any thoughts on this?
In terms of trying to figure out whether active EBV might be involved in your ME/CFS,

Dr Lerner says active EBV infection = high VCA IgM and/or high EA IgG diffuse. Refs: 1 2

Prof Montoya says active EBV infection = high VCA IgG and/or high EA IgG.

Thank you both so much for the info! I'm sorry I'm only just replying to this now - whatever it was really knocked me for six.

Thankfully I seem to have turned a corner and I'm feeling a fair bit better today. I've slowly been getting my energy back but the throat inflamation, PEM and difficulty regulating my body temperature remain so I'm trying not to do too much too soon.

It felt so similar to my experience of EBV the first time around that I feel fairly certain it was a reactivation event. I say that because my CFS has been largely under control for the past 8 years and this thing just hit me like a truck. It would've been nice to know exactly what it was for peace of mind and so that I could have had it documented on my medical record, but those tests aren't cheap and the private companies I looked at didn't offer EBV EA or EA IgG diffuse.

Think I'll just stick to resting, hydrating, Vitamin D & a little B12 (because I can't tolerate much) and hope it passes much quicker than last time.
 
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