Thank you all for your replies. Trying to digest all this...Can any of you decipher the info on this lab result? Frustrated that 2 other labs I got last week weren't able to run because they arrived at the Mayo lab too late.
It says your Epstein Barr Early Antigen is negative. Usually, labs report a number, not positive or negative. I don't find labs that without information and don't allow the doctor to interpret what they measure to be helpful.
I posted the paper this comes from earlier - note the sections I've highlighted with bold and italics.
"Although
not always present, EA(D) IgG increases during the first 3-4 wk and is no longer detectable after 3-4 mo (approximately 85% of the patients with acute infection are positive for up to 3 mo after symptom onset)[23,24], even though in some cases they can still be detected years after a primary infection[23]. Approximately, 20%-30% of healthy subjects who have previously been infected by EBV have EA (D) IgG[2,23,25]. High titers have also been seen during reactivation[26] and in patients with nasopharyngeal carcinoma[27], who also have high titers of VCA and EA IgA[28]. EA (R) IgG levels may remain high for up to 2 years and, in cases of protracted disease, can be detected after the disappearance of EA (D) IgG[29]. EA (R) IgG has been found in children aged less than 2 years with silent infection, in patients with Burkitt’s lymphoma, and also in the previously infected subjects at low levels[28]. High levels of EA (D) and/or EA (R) IgG can also be seen in cases of reactivation and in immunocompromised patients[29]."
"
The detection of antibodies is less useful in immunocompromised patients because of their immune system dysfunctions, and the fact that the type of antibody and its maintenance may vary over time depending on the dynamics of the disease, thus leading to atypical profiles[44]. There is generally an increase in the titers of VCA IgG and EA (D) or EA (R) IgG, with a decrease in the titer or loss of EBNA-1 IgG; there may also be increases in other antibody classes such as EA IgA and, although less frequently, VCA IgM.
The variability observed in different patients ... indicated that a search for EBV DNA by molecular biology methods is useful for the diagnosis and follow-up of patients at risk of developing EBV-related lymphoproliferative disorders[45]."
The papers I shared explain that diagnosing EBV using antibodies is usually preferred for most patients because it allows them to figure out where the patient is in the EBV infection process, e.g. do they have a first time, acute infection? Has it been there awhile? Is the first time infection over and this is just evidence of a previous infection? Is it reactivated? By looking at the combination of EBNA, EA, and VCA IgG and IgM, they usually can figure it out. Except in the cases on the charts I posted that says it's indeterminate and more testing us needed.
BUT, this all goes out the window if someone is immunocompromised OR at risk of developing an EBV lymphoproliferative disorder, like lymphomas and leukemias. In that case, DNA (PCR) testing is recommended.
It also says that EA may not be positive at all in some patients. This is exactly what happened in my case - my PCR was positive - I had an atypical profile to to immune system dysfunction.
Furthermore, EBV may be active and may not show up on a blood test - it may be quietly simmering away in the tissues causing mischief, and only occasionally releasing anything into the blood. Only a biopsy would find it. Autopsies of ME)CFS patients who tested negative for certain viruses were found to have viruses when various tissues were tested.
Wondering why a doctor who knows that you have twice had IgM positive results over 2 years apart, a history of cancer, and a leukemia scare is piddling around as if you were some 15 year old with suspected mono. EBV does cause cancer and autoimmunity and can, in some cases, lead to death.
If I were the patient, I would be asking at least for EBV PCR tests at 4-6 week intervals over 4-6 months to trap it when it comes out of hiding. Or, better yet, asking to trial an antiviral like valacyclovir, valganciclovir, or famciclovir. And a thorough investigation of my immune function - CD4, CD8, natural killer cell function and immunoglobulins (G, A, E, M) with subclasses. And, on my own, or with the help of a functional medicine doctor look into nutrients and botanicals to support immune function, like zinc, vitamins A and C, andrographis, and colostrum.
I don't know if you're seeing the people who didn't help the first time around, but you may find them reticent to help, either because they only do oncology not viruses, or, more nefariously because they don't want to be gone after for malpractice. Finding an independent thinker her might be useful.
Best wishes ...