Testing for Chronic or Reoccurring Mono?

March 20, 2025 2:48 PM

Going to the doctor next week for reoccurring Mono need some guidance for testing or specialists.

I have a doctor's appointment next week to explore why I've had swollen lymph nodes for months. Last time this happened my doctor guessed I had a relapse of mono, but sent me for an ultrasound of the lymph node when it didn't go down after about 4 months. This lymph node is still swollen 9 months later.

This time I've gotten sick again and gotten even more swollen lymph nodes (along with fatigue, etc). This time it has just been 6 weeks, but my throat still hurts, my lymph nodes are swollen even into my chest area, cold sores, etc. Thankfully no rash this time.

Guessing based on previous experiences with this doc that she will do some blood work that will be inconclusive and that will be that. She has said in the past that I might have some sort of chronic fatigue, especially because triggers include exercise.

Should I be asking for a specialist? If so, what kind?
Should I be asking for a specific blood test? Last time she tested me for mono but it was dumb and the test just noted that I had had mono in the past, like what was the point of that?

I have a prescription for Valtrex that I take when I feel cold sores coming on. Half-tempted to ask for a daily instead of intermittent prescription. I know that research on this is not all there, but I'd love to get some of my life back and not be exhausted constantly trying to bounce back from these reoccurring illnesses that are triggering ...whatever this is.

FWIW, I don't think is necessarily Long Covid or POTS. I've had a mild version of the later before, and I'm not having the lack of oxygen feeling I had back then.

I would prefer research- or experience based answers rather than speculation. TIA.

posted by aetg to Health & Fitness (3 answers total)

Best answer: I am sorry that you are in this position. Unfortunately, fatigue after exercise, swollen lymph nodes and general malaise (feeling unwell) is common after a mono infection (some studies have found symptoms like this in 10% of people six months after a mono case). For many people, it seems to resolve on its own, in other cases it becomes ME/CFS (chronic fatigue syndrome, which I have though probably not from mono specifically). At 7 months, you could certainly qualify for an ME/CFS diagnosis.

The recommendation that most people will give you is to rest and stay within your limits. Don't push yourself until you get to the point where you'll be worse off the day after or two days later. Don't do exercise if you can't tolerate it. Unfortunately, treatment options are pretty thin on the ground and there is nothing that reliably helps most people. Depending where you, your doctor may be able to refer you to someone with experience with ME/CFS after mono. If you share a location here, I may be able to make a recommendation.

The whole concept of chronic mono / EBV is debated, so you aren't going to find easy testing or treatment options. The idea of treating with antivirals after mono when symptoms continue is one that has been talked about a lot and some people have tried it, but there haven't been any solid results on this.
posted by ssg at 4:41 PM on March 20

Best answer: Hi, this is me. I had a host of vague, non-specific symptoms (brain fog, hair thinning, fatigue, diffuse chronic pain) starting in 2018 after an extended upper respiratory infection. I bounced around between different PCPs and specialists, receiving a lot of “possible” diagnoses but no resolution and nothing definitive. When I moved and got a new PCP, she saw my history and asked if I had ever had mono. I had, when I was 18 (quite a while ago now). She diagnosed me with post-viral syndrome, basically long COVID before Covid was around.

At our first visit, she did an Epstein-Barr panel, which at my institution includes: Epstein-Barr Virus Antibody to Viral Capsid Antigen, IgG/IgM; Epstein-Barr Virus Antibody to Nuclear Antigen, IgG; Epstein-Barr Virus Antibody to Early D Antigen (EA-D), IgG. They all came back as if I had an active mono infection, which was wild because this was 5 years since the inciting illness in 2018.

For treatment, we have focused on my chronic pain and exercise intolerance. She sent me to the long Covid clinic at our physical therapy practice, where I’ve been focusing on being active without elevating my heart rate too much, so I don’t push past my energy threshold and get fatigued. In your case, I’d say you should see an internist or someone who specializes in long COVID. My current doctor ran the long COVID clinic at her prior institution; it was that experience that made her recognize my symptoms as post-viral syndrome.
posted by bluloo at 7:48 PM on March 21

Best answer: Your symptoms could also be due to an autoimmune disease. If you're not happy with the outcomes from your next GP visit, consider asking for a referral for a rheumatologist. Even if it's ultimately found to not be autoimmune, rheumatologists are real experts at these sorts of mysteries.
posted by hydropsyche at 5:22 AM on March 22