Chronic EBV

[shelin]

Hey Everyone!

Over the last couple of months, I have been having a multitude of strange symptoms. I have gone through an immense amount of testing with very little answers. I've also done multiple and thorough neuro exams and have no weakness or atrophy. I do not have lyme disease and have tested extensively for it. I also do not have a vitamin deficiency. I have had a brain and full spine scan which were both negative. I have done vast other testing and have been cleared by infectious diseases, cardiology, endocrinology, auto-immune (numerous exams), gastro (endoscopy to check for celiac), etc... The only blood work that came back really abnormal is my EBV. Here are the values of the test:
EBV VIRAL CAPSID AG (VCA) AB (IGM) 81.00 H U/mL NL2
EBV VIRAL CAPSID AG (VCA) AB (IGG) 316.00 H U/mL NL2
EBV NUCLEAR AG (EBNA) AB (IGG) 322.00 H U/mL NL2
EBV EARLY ANTIGEN D AB (IGG) <9.00 N U/mL NL2

Quickly going over it, my symptoms are as follows: unprovoked muscle soreness, muscle twitching, feelings of off-balance/coordination (hands and legs), random sores in my mouth, heavy anxiety, joint/body stiffness, brain fog, vision floaters, occasional pins/needles, and heartburn. This all seemed to start one day with a one-off instance of blurry eyesight that cleared up quickly. I was sick with a mild cold at the time then the rest of the above symptoms started to appear and have been going on for 8 months.

I'm just so curious as to whether or not this could be the cause and if so, does anyone know of an effective treatment?

Any insight on this would be really helpful.

Thanks!

 

[Hip]

I have done vast other testing and have been cleared by infectious diseases

I bet you were not properly tested for coxsackievirus B and echovirus at ARUP Lab, which are two of the most important viruses in ME/CFS.

The only blood work that came back really abnormal is my EBV. Here are the values of the test:

Values do not mean much unless you know the reference ranges, and even then its hard to interpret the results in the context of ME/CFS. Usually you need to see an ME/CFS specialist to interpret these tests in the context of ME/CFS. ME/CFS doctors interpret results differently to regular infectious diseases specialists. Some interpretative guidance is provided in the EBV section of this roadmap.

 

[shelin]

Hey Hip,

Does all of this sound like ME/CFS to you? Are these typical symptoms? As for getting evaluated for coxsackievirus , I'm not sure that it really makes that much sense to do as there is not any cure. Thanks for the help!

 

[Hip]

Does all of this sound like ME/CFS to you?

Do you get PEM (post-exertional malaise)? That's often a telling symptom of ME/CFS.

You might like to read the CDC Fukuda criteria for ME/CFS, or the more precise Canadian consensus criteria (see the 7 boxed criteria on page 2), or the nice and simple IOM criteria, and check whether your symptoms match those ME/CFS diagnostic criteria.

 

[shelin]

That's the thing, throughout all of this and my symptoms, I really have never had much fatigue.

 

[Learner1]

@shelin According to the attached, your EBV titers indicate an acute infection. There are several antivirals, Valcyte, Valtrex, Famvir, and artesunate/artemisinin, which are effective against EBV. EBV is also notorious for triggering autoimmunity so you may benefit from looking into antibodies that may have developed. Also attached is an article 9n how EBV can trigger autoimmune diseases and a lost of antibody tests gathered by patients around here, which many of us have found we have one or a few of.

 

[ljimbo423]

That's the thing, throughout all of this and my symptoms, I really have never had much fatigue.

According to the attached, your EBV titers indicate an acute infection.

@Learner1 - Wouldn't fatigue be at least very noticeable if not debilitating if shelin had an EBV reactivation?

@shelin- There are different ways that EBV titers are evaluated. Robert Naviaux, a leading ME/CFS researcher and a world renown virologist of 20-30 years.

Says the reason most people with ME/CFS have high viral titers, is because of the immune system dysfunction in ME/CFS, not because of a reactivation.

He also says that this is usually shown by PCR testing, that most often shows no viral reactivation even in people with high viral titers with ME/CFS.

PCR testing, tests for RNA or DNA particles from viruses in the bloodstream and is extremely sensitive.

My suggestion would be, if you want to follow through and make sure you do or don't have a reactivation of EBV. Is to have a PCR test done.

 

[Hip]

@shelin According to the attached, your EBV titers indicate an acute infection.

How are you able to discern this if @shelin has not provided the reference ranges from his test results?

There are different ways that EBV titers are evaluated. Robert Naviaux, a leading ME/CFS researcher and a world renown virologist of 20-30 years.

Says the reason most people with ME/CFS have high viral titers, is because of the immune system dysfunction in ME/CFS, not because of a reactivation.

But has Robert Naviaux been able to place any ME/CFS patients into remission because of his treatments? I think no is the answer. This is an important piece of information omitted from your comment.

Whereas if you take people like Dr Martin Lerner or Prof Jose Montoya, who interpret high herpesvirus virus titers as evidence of ongoing herpesvirus infection (ongoing abortive infection in the case of Lerner's interpretation — have you heard of abortive infection by the way?), and treat accordingly with antivirals, they have improved the health of some ME/CFS patients, and even put a few patients into full remission.

So given a choice of Naviaux's interpretation, which offers no effective treatment, and Lerner's/Montoya's interpretation, which leads to a treatment that can yield improvements or remission in some patients, which interpretation would you take?

The one that offers no hope, or the one that offers some hope?

 

[ljimbo423]

But has Robert Naviaux been able to place any ME/CFS patients into remission because of his treatments? I think no is the answer. This is an important piece of information you omitted to mention.

As far as I know he hasn't been testing any CDR treatments in ME/CFS.


What does his theory of the CDR have to do with his experience with finding high EBV and other high viral titers in ME/CFS, then using PCR testing to find that a reactivation, is the exception rather than the rule in ME/CFS? Most with high viral titers don't have a viral reactivation.

So given a choice of Naviaux's interpretation, which offers no effective treatment, and Lerner's/Montoya's interpretation and treatment, which leads to improvements or remission in some patients, which would you take?

Respectfully, neither. I am having tremendous success treating dysbiosis, leaky gut and mitochondrial dysfunction. My quality of life has improved profoundly and continues too!

For me to look for a different treatment, that may or may not work, doesn't make sense given how good I feel 90% of the time.

have you heard of abortive infection?

Yes I have. If an abortive infection was causing symptoms by immune system activation. Then RNA or DNA from the virus the immune system is attacking, should show up in the bloodstream according to Ron Davis and the immunologists he works with.

As I understand that, if the immune system recognizes the virus or part of the virus and becomes activated. Then some of the RNA or DNA of that virus would get into the bloodstream. There, PCR testing would find it.


I would just like to add one other thing. I'm not attacking any idea about how to treat ME/CFS. What I am trying to do, is to present the truth, as best I understand it, in the hope of helping others.

 

[Learner1]

How are you able to discern this if @shelin has not provided the reference ranges from his test results?

By reading the word "High" next to the value AND providing a reference so that @shelin could verify for him/herself.

 

[Learner1]

As I understand that, if the immune system recognizes the virus or part of the virus and becomes activated. Then some of the RNA or DNA of that virus would get into the bloodstream. There, PCR testing would find it.

Unfortunately, it doesn't 100% of the time. There are false negatives - see attached.

I would just like to add one other thing. I'm not attacking any idea about how to treat ME/CFS. What I am trying to do, is to present the truth, as best I understand it, in the hope of helping others.

If you really, truly want to help people, then you won't steer people way from a treatment path that can help them.

There actually are many of us who actually do have a chronic, reactivated case of EBV that's hard to find because of how wonky our immune system is, and have been wrongly dismissed by doctors, and it's only after getting the right tests and finally being on the correct antiviral that we finally begin to improve.

So, encouraging patients to get the full gamut of testing and having them correctly interpreted would be the helpful thing to do.

 

[ljimbo423]

If you really, truly want to help people, then you won't steer people way from a treatment path that can help them.

How do you know it can help them? Aren't you doing the same thing? Suggesting that they follow treatment for high viral titers, when it could be something else that is causing their symptoms.

There actually are many of us who actually do have a chronic, reactivated case of EBV that's hard to find because of how wonky our immune system is, and have been wrongly dismissed by doctors, and it's only after getting the right tests and finally being on the correct antiviral that we finally begin to improve.

That I'm sure does happen, although don't I think it's very often. I have also read many posts here, of people that have spent months or years treating high viral titers.

That have not improved or gotten worse. So one size does not fit all, even if someone has high viral titers. Leading them to treat there high viral titers would have been a mistake. As they didn't improve and some got worse.

So, encouraging patients to get the full gamut of testing and having them correctly interpreted would be the helpful thing to do.

There is the problem. Many doctors interpret high viral titers differently, with different test ranges. Which doctors test range is right? Are any of the test ranges right for ME/CFS?

It might be just as Robert Naviaux says it is and high viral titers in ME/CFS cannot be interpreted using test ranges for people without ME/CFS, because of the immune system dysfunction in ME/CFS.

 

[Learner1]

Look, I had 0 for EBNA and EA for 2 years, so I didnt think I had EBV nor did several doctors. Meanwhile, EBV was wreaking havoc in my body and created 2 different autoimmune problems, for which I am now on 7 prescription drugs and high dose IVIG, with 3 more drugs.

I eventually had sky high VCA PLUS a positive PCR. My doctor, a noted expert, who is one of the only doctors getting patients well, said 'I have never seen anyone in my 30 years of experience with your particular combination of test results, but you definitely have EBV."

Treating it with Valcyte cleared my brain fog in 30 days. 9 months helped my fatigue tremendously.

But I am still left with 2 disabling, expensive to treat, autoimmune conditions that I may have been able to avoid if some doctor had done the right combo of tests early on (and I'd been persistent enough to demand the complete set of tests.

If I'd gotten antiviral treatment sooner, I might be cured now, instead of looking for how to reverse my 2 serious autoimmune problems. If I'd listened to your advice, I'd still be at 40% function rather than 85%, with EBV causing even more mischief.

It does no harm to get complete testing. And, in some of these cases, trying an antiviral might just be the most expedient thing to do. Obviously, it's important to look for other problems, microbiome disruption, nutrient deficiencies, immune function, autoimmune antibodies, and other comorbidities.

There is the problem. Many doctors interpret high viral titers differently, with different test ranges. Which doctors test range is right? Are any of the test ranges right for ME/CFS?

A PCR is a DNA test, not a titer. If you find the DNA, it doesn't need so much interpreting. There are cases of false negatives for PCRs as discussed in the article. A full battery of tests gives the best chance for correct interpretation.

I had 2 infectious disease specialists and 3 other excellent doctors miss my EBV, but they didn't bother to run the PCR. It was only a doctor with decades of experience with HIV and other weird infections and broken immune systems who was savvy enough to run the complete set of tests to find it.

It might be just as Robert Naviaux says it is and high viral titers in ME/CFS cannot be interpreted using test ranges for people without ME/CFS, because of the immune system dysfunction in ME/CFS.

This may be true. We are all individuals. That's why a thorough investigation must be done. In addition to the other articles I shared detailing the challenges of correct EBV diagnoses and false positives and negatives, the attached adds to it and discusses deficient responses due to immune system abnormalities which make diagnosis tricky.

This is a complex disease and no stone should be left unturned. One needs to find and treat the right set of problems to get well.

 

[Hip]

By reading the word "High" next to the value AND providing a reference so that @shelin could verify for him/herself.

Ah, I missed that "H". Yes you are right, that "H" no doubt stands for "high" and N for normal.

 

[ljimbo423]

A PCR is a DNA test, not a titer. If you find the DNA, it doesn't need so much interpreting. There are cases of false negatives for PCRs as discussed in the article. A full battery of tests gives the best chance for correct interpretation.

A PCR test is what I suggested to the OP, if you look at post #7. IMO, high viral titers in ME/CFS do not necessarily mean a viral reactivation and are often misleading. I will leave it here.

 

[ljimbo423]

If I'd listened to your advice, I'd still be at 40% function rather than 85%, with EBV causing even more mischief.

What advise is that? You had a positive PCR test. That shows an active EBV infection. That was my suggestion to the original poster.

 

[Dallase1]

I went to see Dr. Chia and he firmly believes EBV is not the correct virus to treat due to the lack of results with the antivirals - coming from him.