EBV results and reactivation?

[birb]

Hello! I'm new to the forum after a couple of years of trying to figure out what the heck my body is doing and just got tested for mono after having a huge flare up in symptoms and I need some help. I have previously been tested for lupus and rheumatoid arthritis a couple of years back which were negative, and I have hashimoto's disease that has had a "normal" TSH level for a few years after being on replacement hormones. I also have chronically low Vit D which I am working on supplementing.

My recent EBV results are as follows:

VCA IGG: 137 (21.99 and above is positive)

VCA IGM: 36 (according to my doctor 36 and under is negative)

EBV Nuclear Ag Ab: 600 (21.99 and above is positive)

According to these results, I have had a past infection with the virus. I'm wondering however if I have been having reactivation of the virus which causes my flare ups. I have been symptomatic for years and every time they test my thyroid it's in the normal range and yet I'm still struggling with extreme fatigue, bruising, sore throats, muscle and joint pain, orthostatic hypotension, heavy breathing, tachycardia, and most recently, lower back pain/pain around my kidneys.

I also started a new job in December of 2017 and ended up getting strep (or what they thought was strep) twice in two weeks around that time. This job is emotionally stressful and my symptoms have only been getting more frequent and severe. I'm definitely going to have to change jobs because of all this...

To top it all off, my doctor said that I probably don't have CFS/ME due to my other typical labs (CBC, etc) being normal. I thought CFS/ME couldn't be diagnosed with those kind of tests? I just want to know what's wrong.

Any help is greatly appreciated.

 

[birb]

Note: According to the ICC and CCC I definitely have ME/CFS so I feel like I should ask for a second professional opinion if I want to get an actual diagnosis...

 

[Learner1]

@birb

EBV may indeed be an explanation for your symptoms. It can also create autoimmunity.

I've attached some documents that detail how difficult it is to read EBV tests, even if you have a PCR test, which should show the DNA, but not in all cases.

I went on Valcyte for 10 months for a sneaky case of EBV that evaded multiple tests, birthday a top ME/CFS specialist was able to find with the right combination of tests. It helped me a lot with fatigue and cognitive function.

 

[5150]

@birb Interesting this subject has arisen now, because the past 2 weeks I've been reading about how The Medical Medium site(Anthony William) has been saying he thinks the entire sickness is All EBV, but different symptoms are just the EBV in its' current stage... which will then go on to morph into the next phase, until it's all phased out, and that's all she wrote-- the end. I wonder just how far EBV has been taken into research ? and if someone like Ron Davis feels that it is played out to its' end in research? OR is it possible that EBV has so many deadly endings?

 

[Moof]

You're right – there's no definitive test at present. Most standard lab tests come back normal, and your doctor shouldn't rely on them to confirm or deny ME. More involved testing has shown all kinds of abnormalities, but the challenge is that they're not consistent across the ME population. It's probably true to say that the majority of patients, doctors and researchers believe that it isn't a single illness, or at least that there are several distinct sub-groups.

The difficulty with EBV is that most of the Western population has been exposed to it and the majority has been infected at some point, even if it caused few or no symptoms. It's almost certainly what triggered my ME 40-odd years ago, along with hundreds of thousands (millions?) of others. It's a tough virus to eliminate, and so ubiquitous that re-exposure happens easily. I'm not sure it's possible at present to differentiate reliably between symptoms caused by EBV and by ME; the main difference is that the majority recover from the symptomatic phase of EBV, but only a minority recover from ME. Repeated reactivation of EBV would look like relapsing/remitting ME.

I've never been tested, because it isn't offered here (as the science stands at present it's not considered a good use of public funds). It's also difficult to get prescriptions for antivirals, because the evidence of benefit against EBV, CMV, etc, is too weak to be convincing. Some patients have had good results, though, so if you're in a country that does prescribe them, they may well be worth trying if your doctor agrees. They may not be a cure for ME, but some members of PR have managed to reduce their symptoms using them. I don't know how well they work against EBV – best guess is that, as with ME, they help some.

I realise this doesn't help you much with your situation, but at the very least, you could stress to your doctor that standard labs can't eliminate ME as a possibility.

 

[Learner1]

It's also difficult to get prescriptions for antivirals, because the evidence of benefit against EBV, CMV, etc, is too weak to be convincing. Some patients have had good results, though, so if you're in a country that does prescribe them, they may well be worth trying if your doctor agrees. They may not be a cure for ME, but some members of PR have managed to reduce their symptoms using them. I don't know how well they work against EBV – best guess is that, as with ME, they help some.

Er...you may want to read the Montoya Valganciclovir paper I posted above. It helps a lot.

 

[Tammy]

@birb Interesting this subject has arisen now, because the past 2 weeks I've been reading about how The Medical Medium site(Anthony William) has been saying he thinks the entire sickness is All EBV, but different symptoms are just the EBV in its' current stage... which will then go on to morph into the next phase, until it's all phased out, and that's all she wrote-- the end. I wonder just how far EBV has been taken into research ? and if someone like Ron Davis feels that it is played out to its' end in research? OR is it possible that EBV has so many deadly endings?

I've learned more about EBV from Anthony William than any other source of information. According to AW there are approx. 60 different strains of the virus.......some more aggresive than others. The virus can go dormant and hide out in the organs and even thyroid gland and can be awaken by any number of triggers. Tests that show a person had a past infection really doesn't prove that the virus isn't still doing damage. It just isn't picked up as being active in the bloodstream because now it is deeper in the body (CNS, organs, etc.) AW does mention other viruses in the herpetic family. I have improved after 20 yrs of cfs hell applying what I have learned from this man.

 

[Moof]

Er...you may want to read the Montoya Valganciclovir paper I posted above. It helps a lot.

I'm talking about the medical establishment – they consider it not proven rigorously enough to be a good use of public funds. I've no way to know, as they're not used here.

 

[Learner1]

Montoya works at Stanford University. It's part of the medical establishment here in the US.

Finding that I had chronic EBV and getting treatment with Valcyte got me from 40% function to 80% function. Nothing shott of the Valcyte worked and my doctors had tried a number of other treatments.

Change is possible.

 

[Learner1]

I've learned more about EBV from Anthony William than any other source of information.

Do you have a weblink or book you could recommend?

 

[Moof]

Montoya works at Stanford University. It's part of the medical establishment here in the US.

Sure – I'm in the UK, where healthcare is free for the most part, so it's a very different environment. GPs are for the most part not allowed to prescribe outside NICE guidelines and pathways – though as we know, those don't always reflect science very accurately! It varies, depending on the disease; the policymakers manage to be at the cutting edge in so many ways, yet are unable even to achieve basic common sense in others.

 

[Learner1]

You have private doctors. You can leave the country. You don't just have to sit there and be sick and tell everyone else there's no hope.

We don't have all the answers here in the US. We pay huge sums for health insurance and for deductibles, copays, and out of pocket expenses, and for things that insurance won't cover.

I have spent thousands of $US for treatment which has helped. I have bought treatments from outside the US and have travelled outside the US to get help, and sent my blood to both the UK and Germany for testing. Your countrymate, Shawn, took this approach, too, travelling across the world to get help.

There has been a plethora of helpful research. The truth is the truth, no matter what your government says. It's up to us as patients to get the best info we can and act upon it if we want to get better, not sit around wringing our hands waiting for someone to hand us the solution.

Sorry if this sounds harsh, but as a patient, I want to get better, and not sit around wallowing in illness complaining...

 

[Learner1]

...also, just as you have NICE guidelines, here in the US, insurance companies have policies which restrict diagnostic tests and treatments to certain ICD10 codes, which can seem like insurmountable barriers...

If one wants diagnostics and treatments, it is best to be given ICD10 codes for anything but ME/CFS, as there are no treatments for ME/CFS. Except CBT and GET, which aren't useful.

The 2015 IOM study made it clear that ME/CFS should not be a diagnosis of exclusion, that many of us (if not all of us) have comorbidities that can be treated, and recent research has shown numerous abnormalities that can be treated.

Surely a clever doctor can make use of the ICD10 codes to help you, or you yourself can make a study of them and reach out for help.

Having a treatable infection, a metabolic imbalance, dysautonomia, an immunodeficiency or an autoimmune disease may all bring more possibilities for successful treatment.

 

[Moof]

I want to get better, and not sit around wallowing in illness complaining...

I just advised the OP that it's hard to tell the difference between ME and EBV, and that antivirals are worth trying because they clearly help some people...

 

[Tammy]

Do you have a weblink or book you could recommend?

Medical Medium "Secrets Behind Chronic and Mystery Illness and How to Finally Heal". This book goes into detail about EBV. Anthony's website medicalmedium.com has radio podcasts that he has done in the past. Click on Radio and listen now option to get to the podcasts. The one on EBV would be a good one to listen to.

 

[JES]

I'm not aware of any person in UK or Europe getting treatment for ME/CFS with Valcyte. I could be wrong, but as it is now, the opportunities for European ME/CFS patients are limited.

You could travel US and see a doctor there. In theory at least, provided that you overcome the first hurdle and can actually handle the long trip. The second problem is the medication itself. Valcyte firstly costs a lot and in Europe people typically don't have private insurance, they rely on state insurance, which doesn't cover things like Valcyte. Second problem is how to obtain the medication. From outside EU you cannot bring in medicine to EU except for a few months private usage at most. And European pharmacies won't accept US prescriptions, so that's another problem. If it was somehow feasible, I would have attempted for it long ago.

 

[Hip]

@birb Interesting this subject has arisen now, because the past 2 weeks I've been reading about how The Medical Medium site(Anthony William) has been saying he thinks the entire sickness is All EBV, but different symptoms are just the EBV in its' current stage...

Anthony William is The Medical Conman. He charges $500 for a half-hour phone consultation, and then generally tells everyone that their problem is Epstein-Barr virus. If only it were that simple, doctors wouldn't need to spend 5 years at medical school.

 

[Hip]

My recent EBV results are as follows

Here is how some ME/CFS doctors interpret EBV tests. As you can see, Dr Martin Lerner says ME/CFS patients have an active EBV infection if there are elevated antibody titers in the EBV IgM VCA and/or EBV EA diffuse tests by ELISA.

The full range of infections linked to ME/CFS includes: coxsackievirus B, echovirus, Epstein-Barr virus, cytomegalovirus, HHV-6, parvovirus B19 and Chlamydia pneumoniae.

Interpretation of tests is best done by ME/CFS specialists, who will often interpret viral test results in a different way to a regular doctor.