If I were to test all of you reading this Health Tip for evidence of a previous infection by Epstein-Barr virus (EBV), 98% would test “positive” although likely most would not remember
any infection. Some might remember “mono” a/k/a infectious mononucleosis, a/k/a the “kissing disease’ of high school and college years, which could range from an easily forgotten sore throat to a real doozy, where you were wiped out for weeks and had to drop out of school for a semester. In rare cases patients have told me they really never recovered their pre-mono level of energy again, sort of like the chronic fatigue of long COVID if you think about it.
Your positive blood test is showing your antibodies against the now inactivated Epstein-Barr virus (EBV) from your infection long ago. It usually does not need treatment, except in the rare instances when something reactivates it. “Chronic Epstein Barr” infection is one of the several root causes of Chronic Fatigue Syndrome (CFS). Other chronic viruses associated with CFS include Human Herpes 4, cytomegalovirus (CMV), and now Long COVID.
But one genuine mystery here is why so many people test positive for EBV and relatively speaking, so few people have CFS. Why so many had COVID and (fortunately) in comparison so few suffer the fatigue of long COVID.
A second mystery is that our usual array of antiviral medications (acyclovir, Paxlovid, valacyclovir) are generally not helpful when treating CFS.
As you’re sitting reading this Health Tip, all but 2% of you carry your EBV as a fellow traveler in your bodies, dormant, harmless, nestling inside billions of your cells. Although you need not go so far as to lie in bed at night, staring at the ceiling, mumbling, “Why me, God?”, about your EBV, wondering if you should get your affairs in order, you’ll soon learn that EBV, small as it is, merits your attention and respect.
The virus, utterly harmless for most people, and probably you, can be a potential troublemaker. Let’s talk about how you got it.
Once, long ago, you were a seriously horny adolescent, suffering the rising tides of either estrogen or testosterone. You met that seriously cute person, whatever your preference, engaged in some deep kissing, and a few days or weeks later noticed respiratory symptoms that ranged from an uncomfortable scratchy throat to full-fledged ‘mono’.
Just about everyone with mono, mild or severe, recovers uneventfully.
Except those that didn’t and can date their lifetime of chronic fatigue to their weeks of ‘mono’.
One variation of chronic EBV is this: they’re fine for weeks at a time then wham! develop a sudden onset of what is best described as ‘mini-mono’, fatigue, fever, sore throat, swollen
glands, symptoms severe enough to disable them. But, then they’ll recover, not knowing when the next episode will occur.
For a while the original Chronic Fatigue Syndrome (also called Myalgic Encephalomyelitis) was attributed solely to EBV but when everyone, including doctors themselves, began testing ‘positive’ for EBV researchers had to take it off the table of CFS/ME suspects.
Doctors then made two errors which they have thankfully reversed. First, since there were no other “positive” tests to diagnose CFS/ME, they took a “blame the patient” stance and decided that patients were hypochondriacs. It’s a common but very regrettable ploy: if you can’t make a diagnosis, then somehow twist it around. We’ve seen it a lot with long COVID which also has no “positive” tests. Blame the patient (“see a psychiatrist”).
Second, they wrote off all those EBV antibodies are completely harmless, evidence of the greatness of our immune systems. Once your acute EBV infection is behind you, you’ll never be bothered again.
And word spread among the healthcare profession that because there were universal EBV antibodies, you couldn’t get mono twice. The presence of EBV antibodies was like an immunization to future EBV infections.
This, too, turned out to be wrong.
Evidence mounted that there was more to EBV than met the eye. One small group of patients, for reasons unknown but possibly some flaw in their immune systems, could suddenly be overwhelmed by their chronic EBV and die. This is termed, “Severe Chronic Active Epstein Barr” SCAEB and classified as a ‘rare disease’ which fortunately it is.
And then, quite spookily, the list of conditions associated with “reactivated” Epstein Barr began to grow.
For example: multiple sclerosis, Parkinson’s and a whole slew of autoimmune diseases, including lupus, rheumatoid arthritis, scleroderma, ulcerative colitis/Crohns, Hashimoto’s thyroiditis and an equally frightening list of cancers (Hodgkins Disease, non-Hodgkins lymphoma, nasopharygeal carcinoma, stomach cancer) and even breast cancer and cervical cancer. With so many seemingly unrelated illnesses, maybe that dormant EBV wasn’t so dormant after all.
The pharmaceutical industry has not yet developed an antiviral medication that works against acute EBV (‘mono’) nor is there a vaccine on the horizon. We’ve got safe and effective antivirals against Herpes simplex (cold sores, genital herpes), HSV (shingles), influenza and even HIV and COVID but nothing consistently effective against EBV. So, researchers are focusing on the
“triggers” that reactivate dormant EBV and convert it to disease-causing Chronic Active Epstein Barr.
What those triggers are, and how you can safely keep your personal EBV in check (because, sorry, but you probably have it inside somewhere) will be in next week’s Health Tip.
Be well,
David Edelberg, MD