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EBV test positive for ME

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1. My brother as ME / CFS from last 2yrs . Last week we made Igg/Igm for EBV (VCA) Test and it has been positive . So is it EBV infection still active which has caused ME onset.

2 What is treatments / medication to cure EBV infection .
 
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Hey Manoj! Hopefully I can clear some things up for you and get you moving in the right direction.

The VCA IgG and VCA IgM blood tests that the doctored ordered does not check for an active Epstein Barr / EBV infection. These two blood tests are relatively easy and inexpensive ways to check for immunoglobulins / antibodies that the body has created against the virus to defend itself. Therefore, it can only be used as a way to test if you have had a recent or past infection. There is a handy chart below that shows you how to interpret IgG/IgM tests. I ran into this same thing when I started my ME/CFS diagnostic journey with my primary care doctor.

Screen Shot 2020-01-23 at 11.47.19 AM.png

There is a test that can check for an active, ongoing EBV infection. It isn't ordered very often since EBV is often self-limiting, but it does exist. The LabCorp test is called Epstein-Barr Virus (EBV), Quantitative, DNA PCR, Whole Blood (Code: 139490) - here is a link to the test. This test will be more expensive and may not be covered by insurance, but it will give you the quantitative count of whole EBV DNA in the blood.

If your Quant PCR comes back with detectable amounts of EBV - then your doctor should be able to prescribe Valacyclovir - which is an antiviral drug that can inhibit viral replication.

My IgM/IgG tests came back positive (showing I've had EBV before), but my Quant PCR test came back undetectable for active virus. This is why ME/CFS is such a tough disease from a research perspective - we aren't quite sure what is causing the disease yet. We know EBV can be a trigger, but it likely is not the root cause of the disease.
 

ljimbo423

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My IgM/IgG tests came back positive (showing I've had EBV before), but my Quant PCR test came back undetectable for active virus. This is why ME/CFS is such a tough disease from a research perspective - we aren't quite sure what is causing the disease yet. We know EBV can be a trigger, but it likely is not the root cause of the disease.
Very informative post. Thanks for helping to inform others of the importance of PCR testing in ME/CFS!

I don't know if you have seen ME/CFS researcher and virologist of over 30 years, Robert Naviauxs', view on why some viral or bacterial antibodies are high in ME/CFS or not. He says-

Third, latent and reactivated viral and bacterial infections can occur, but in the case of ME/CFS that has lasted for more than 6 months, this may be the exception rather than the rule.

Some doctors and scientists have not done a good job at educating patients and other scientists about the difference between serological evidence of infection in the form of antibodies like IgM and IgG, and physical evidence of viral replication like PCR amplification of viral RNA or DNA, or bacterial DNA.

We have learned in our autism studies with Dr. Judy Van de Water that supertiters of antibodies do not mean new or reactivated viral replication. Supertiters of IgG antibodies mean that the balancing T-cell and NK cell mediated immune activity is decreased.

This is a functional kind of immune deficiency that causes an unbalanced increase in antibodies. This is like the famous figure-and-ground illusion that shows the silhouette of two faces that also create the form of a vase. Both things happen. But which is cause and which is effect? Increased IgG antibodies to CMV, EBV, HHV6, Coxsackie, etc. are not good evidence of a reactivated viral infection.


Link to article
 

Hip

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VCA IgG and VCA IgM blood tests that the doctored ordered does not check for an active Epstein Barr / EBV infection. These two blood tests are relatively easy and inexpensive ways to check for immunoglobulins / antibodies that the body has created against the virus to defend itself. Therefore, it can only be used as a way to test if you have had a recent or past infection. There is a handy chart below that shows you how to interpret IgG/IgM tests. I ran into this same thing when I started my ME/CFS diagnostic journey with my primary care doctor.
That's not correct from the perspective of ME/CFS doctors, who interpret antibody results slightly differently to regular doctors.

In Dr Martin Lerner's studies, for example, he states that chronic active EBV infection in ME/CFS patients is diagnosed with high antibody levels in the VCA IgM and/or EA IgG diffuse tests. Refs: 1 2

ME/CFS doctors will tell you that PCR tests are not particular useful in ME/CFS, as if an infection is found in the tissues, blood PCR may not detect it. In the case of enterovirus, many studies have shown that blood PCR is negative, but tissue biopsy PCR is positive. Along with the positive tissue biopsy PCR, you also get high antibody levels to enterovirus. Thus the high antibodies look like they might reflect the tissue infection.
 
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ljimbo423

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Actually, it's not information, it's misinformation. And your previous posts on this subject are misinformation also.
The science disagrees. This is from the National Institutes of Health and "ShephardK"s screenshot came from the Mayo Clinic I think. This statement below is in alignment with Robert Naviauxs' views on how to determine if someone has Chronic EBV. They say a PCR test is needed also......

CAEBV is Chronic active EBV

CAEBV is diagnosed based on the signs and symptoms and the results of blood tests that show EBV DNA at high levels, indicating an active infection.

It is a common misconception that people with fatigue alone (and not the symptoms mentioned above) and positive blood markers for EBV have CAEBV.

These blood markers are present for life in people with prior EBV exposure, and are not markers of an active infection of CAEBV.[4]
Link to source
 

Hip

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No, chronic active Epstein-Barr virus infection (CAEBV) is not the same as the assumed chronic active EBV in some cases of ME/CFS. CAEBV is a very rare, but often fatal (if untreated), condition. It is categorically not the same as EBV ME/CFS.

It's important not to confuse these two different illnesses.


ME/CFS doctors do not usually use PCR testing, and they do not consider it important. What they do use is antibody testing, which they consider important.
 
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ljimbo423

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I don't feel that my posts are misinforming people. I've seen probably a dozen or so posts here of people that had high EBV antibodies and thought they had a reactivation but once tested by PCR, they were all negative but one.

This, I feel, brings into question the accuracy of high antibodies in determining EBV reactivation or chronic EBV in ME/CFS.
 
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Yes , I agree if anti-bodies levels are high not always PCR test can detect EBV which may depend upon EBV is Chronic or not . But after exploration from many research papers Immune system and Nervous system go hand in hand . I think there are 3 cases which is as follows

case 1 :
If the cause is neurological (Functional / Structural ) especially related to brain steam like
  • Craniocervical Instability (CCI)
  • Atlantoaxial Istability (AAI)
  • Subaxial Instability
  • Basilar invagination
  • Superior Odontoid Migration
  • Chiari malformation
  • CSF leak
  • Intracarnial hypertension
there is dsyfunction / unbalanced immune system which may produce high antibodies of all previous infections which pateint had before ME onset so main root cause is nervous system inflammation not immune system.

case 2 : Viral Infection
As few of you said that if there is reactivation of EBV or other virals they produce excess antibodies (proteins cytokins ) , which leads to inflammation of nervous system which may result ME . Here cause is Viral infection not Immune System instead viral infection . If infection is suppressed by antivirals there may be decrease in antibody levels and therby improve condtion as well .

case 3 : Immune Dysfunction
If their is unbalanced increase in antibodies without any active infection (chronic / acute ) . though patient had some infection prior . There is real problem with Immune system and still nobody knows what is real cause in this case .

This is my understanding about overproduction of antibodies . If you feel its wrong please correct me . Because according to me right cause needs to found out , and even before that their should be clear understanding .
 

Hip

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I don't feel that my posts are misinforming people. I've seen probably a dozen or so posts here of people that had high EBV antibodies and thought they had a reactivation but once tested by PCR, they were all negative but one.

This, I feel, brings into question the accuracy of high antibodies in determining EBV reactivation or chronic EBV in ME/CFS.
I do not know any ME/CFS doctor who uses PCR testing for viruses (except in certain cases, like for parvovirus).

I accept that among ME/CFS researchers, there is a controversy over whether the high viral antibody levels seen in ME/CFS patients really represent an active infection or not. So it's fair enough to mention this controversy.
 
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This thread has been re-opened. As you continue your discussion, please be respectful of each other. As the forum rules state:

When a member chooses to attack the author of a post rather than the content of the post, that is a personal attack. Please keep your focus on the facts of the topic under discussion - not on the person with whom you disagree.
 
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kel88

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https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3621134/

I guess this is the answer to all.
Less Regulatory T cells / bad functioning TREG cells.

They suppress auto-immunity.
They suppress response after infections (EBV,LYME, but also after vaccinations) - I guess the problem that people get sick after vaccination is not the metals in it, but the response afterwards because of a burden to the already low Tregs.
They also block MAST Cells for expression
(Allergic reaction).

Good information about Tregs.

https://selfhack.com/blog/treg/


I guess that’s why there are many people who feel better when they smoke.
Because nicotine boost FOXP3- boost TREG cells.
Most people feel also better with sunlight (boost Tregs)
And after fasting- boost also Tregs.

I have also low Tregs (I have tested low in 2015 in one of the best immunologist).
And I have chronic EBV.
My PCR was Negative, but my Antigenes does stay high.

Hope this will help :)
 

kel88

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**Also Tregs are made from high fat.
That’s why often keto-diet does help.

I did get Intralipid infusion with high dose EPA (OMEGA). And in 3 days they where much higher.

Oxidative stress lowers TREG CELLS
 
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Dengue virus infection is known to cause a post-infectious fatigue syndrome. So in your brother's case, his chronic symptoms may be due to dengue virus.
Thank you Hip for your point on dengu his IGG / IGM both are positive So can antivirals be useful in this case . Any specialist whom i can take online appointment.
 

Hip

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Thank you Hip for your point on dengu his IGG / IGM both are positive So can antivirals be useful in this case . Any specialist whom i can take online appointment.
Unfortunately there are no antivirals available for dengue virus.

It's possible that some of the immune system boosters used for ME/CFS might help though, such as oxymatrine (which is a supplement you can by online). Some info about oxymatrine here.

Oxymatrine boosts the antiviral branch of the immune system.
 
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Hey, I became sick after Dengue infection. You can read my story here https://forums.phoenixrising.me/threads/dengue-survivor.76845/
However, I later found out a medication that brought me back to about 85% well. You can read that story here https://forums.phoenixrising.me/thr...ng-response-to-cinnarizine-vasodilator.76889/.
Now, for the remaining fatigue and symptoms, I've found the root cause: jugular vein stenosis which causes vascular insufficiency - otherwise called Chronic Cerebrospinal Venous Insufficiency. It can cause intracranial hypertension. I will probably have angioplasty to fix it.
So, to sum up, I think my problem was 100% circulatory/vascular and only triggered by the dengue virus. I don't think dengue was ever a chronic infection, I actually never thought so.
 

nyanko_the_sane

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Now, for the remaining fatigue and symptoms, I've found the root cause: jugular vein stenosis which causes vascular insufficiency - otherwise called Chronic Cerebrospinal Venous Insufficiency. It can cause intracranial hypertension. I will probably have angioplasty to fix it.
I hope you make a full recovery. It is amazing how much detective work is required to figure out complex chronic illnesses.