Cytomegalovirus Glandular Fever: My Experience Thus Far

Hi everyone,

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I'm new to this, being diagnosed with glandular fever on the 8th of February this year. Just thought it might be helpful to share my story, as I have the atypical form rather than the more usual one caused by the Epstein-Barr virus (EBV). Here is a timeline of events:

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23rd September 2022: contracted an unspecified winter vomiting bug which put me in hospital over the weekend due to an underlying metabolic condition that requires strict caloric management (I cannot fast or under-fuel, so anything that places normal oral caloric intake at risk past a critical threshold has to be dealt with in hospital with IV glucose and electrolytes). Discharged and recovered completely at home over the next two weeks once able to eat and drink sufficiently by mouth again.

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16th October: minor sore throat, tiredness and sniffliness; tested positive for covid. Recovered over the next week with the precautionary help of a weeklong course of Paxlovid. Tested negative by the end of the Paxlovid course, but then tested briefly positive again and felt a mildly grotty for a couple of days before making a full, solid recovery.

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Late November: gearing up for the local pantomime in early December, for which I was playing an acting role and providing music on the keyboard, I started experiencing slightly increased fatigue as well as a runny nose and very mild cough. Started sinus irrigations, which flushed out a tiny bit of green gunk. Started having a feeling like a mild sinus infection. Thought this was just a normal minor seasonal bug, coupled with the inevitable physical strain of final preparations for the show. As a precaution - in case it was irritating my airways (despite using sterilised water, the proper salt solution, and cleaning and sterilising the bottle after each use as directed) - I stopped the sinus irrigation. Managed to stay well enough to enjoy and give my all for the duration of the show's run (4 performances 8th-10th December).

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12th December: started feeling very run-down towards the end of the day; struggled to keep motivated and focused while getting ready for bed - kept having to stop to zone out and rest. Thought it was just delayed tiredness post-panto.

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13th December: woke up with raging sore throat, lots of green gunk, feeling very flushed and increasingly heavy and tired throughout the day. Discovered white spots on tonsils. Not really worried or surprised, as strep throat has been going round where I live, and panto audiences had totalled 600 across all the performances so it was almost inevitable that I would get something in the course of things. Went to the GP (I was lucky to get an appointment that afternoon), who prescribed seven days of clarithromycin as a precaution due to my metabolic condition (I am allergic to penicillin, the antibiotic of choice for strep throat). These didn't seem to do much to help for the rest of the day, but I started improving the next day, and the white spots and green gunk had gone by the time the course was complete, so I thought nothing more of it. Had a good Christmas and New Year.

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2nd January: felt a bit sniffly but thought it was likely tiredness from Hogmanay celebrations, coupled with catch-up tiredness from Christmas. Went for a 3 mile run, but at a very gentle pace and with no pressure.

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3rd January: woke up with unmistakable cold symptoms but no sore throat and no green gunk. Energy levels not too bad overall but muscles quite stiff. Recovered over the next couple of weeks, in time for skiing trip to Austria 13th-22nd January. Had a brilliant skiing trip with no problems.

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22nd January: scratchy throat by bedtime but assumed it was altitude re-adjustment having been 10,000 feet above sea level for the skiing trip.

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23rd January: woke up with definitely sore throat and feeling yuck (but milder than the first time), and a return of the white tonsil spots and green gunk. Called GP for a telephone appointment. He asked me to send in a throat swab sample, which I did the following day, along with collecting another precautionary 5 day prescription for clarithromycin. He also asked if I'd had any infections in between the two bouts of tonsillitis. When I said yes, I'd had a cold, that was the first time he floated the possibility of glandular fever. I couldn't believe I'd have been able to do a skiing trip with active glandular fever, plus I didn't think symptoms seemed as severe as was typical for glandular fever, and he acknowledged that lack of swollen glands was not typical, although he said the history sounded very like it to him.

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30th January: called the GP as white spot had not disappeared, we still had no answers from the swab, and my antibiotic course had finished on Sunday morning. Having treated it with antibiotics, if it was bacterial I didn't want to be responsible for growing a resistant super-bug by dint of not at least keeping it subdued until we found out how to vanquish it.

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2nd of February: swab had failed to grow anything. I had an in-person examination. To cover all bases he felt my glands (which weren't swollen), took a second swab in case I just hadn't swabbed the right area or swabbed enough or something, and did a blood test for glandular fever. For the interim between taking the new tests and getting the results he gave me another 5 day repeat for the clarithromycin, again just as a precaution. Meanwhile, I was beginning to feel like I was really pestering him, but he categorically stated that I shouldn't have white spots on my tonsils, and while it was up to me what I wanted to do, if both tests came back negative we could take another swab and test for other possible bacterial causes.

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8th of Feburary: white spot STILL hadn't disappeared by the time the clarithromycin course finished on the 7th of February. Managed to get an appointment for later that afternoon, during which I received my diagnosis based on indications from the blood tests. I HAVE had EBV, but not recently. However, I had acute immunoglobulin proteins against cytomegalovirus, giving every indication that this is what I had been fighting. The GP 'prescribed' an easy month of it for me (quite a feat in my circumstances!), along with a month of foregoing heavy lifting and contact sports. He examined me for spleen and liver enlargement (I had NO idea I was so ticklish under the ribs), and couldn't find any evidence of either, but said these things are often impossible to feel except in the slimmest of people, and size of both things varies enormously between people anyway, so better to err on the side of caution.

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Prior to the appointment I had been feeling brain fog and sleepiness, as well as exhaustion and muscle aches for two days or so after even mild exercise (slow swimming, about 240m per session), and periodic sleepiness too, but again, I assumed that as my body had been through the mill it was natural for it to feel wrung out for a while. I was taking extra care to wear a mask in busy places, as well as to be aware of my own energy levels, and was trying to eat well and make use of easy convenience foods during times of low energy, all to rebuild what I simply thought was a dilapidated immune system that hadn't had a break all winter, and a body that was tired from a busy schedule coupled with a slew of bugs. To be honest, I was also taking the precaution of treating it as possible glandular fever too in the back of my mind, while simultaneously feeling like I was worrying far too much about absolutely nothing, and feeling ridiculous for even imagining it MIGHT be anything as definitive as that, despite the GP's testing (which I assumed was just a standard course of action in the circumstances to absolutely rule it out). If it weren't for the white spot lingering, and the GP's categorical assurance that it shouldn't be there, I would have simply explained everything away to myself, left it, and tried to get on with things.

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When I write it out like this, it boggles my mind how much assuming and denying and dismissing I did in my own mind, with respect to so many aspects, for fear of seeming neurotic. It maybe comes from being medically complex but also fit, healthy and robust most of the time. I have inattentive-type ADHD, which means lack of focus and motivation isn't necessarily a red flag and can be hard to tell apart from illness-related brain fog. I'm also autistic, which can interfere with bodily awareness and perception of things like pain and discomfort. Finally, my metabolic condition means that I've been exposed to nasogastric tubes as a young child, as well as an increased amount of blood tests, finger sticks, injections and IV drips, which means I have a higher pain threshold for some things than most. All these combined mean my scale for self-evaluation is quite different from most people's.

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I have absolutely no idea how I contracted CMV, as I hadn't been doing anything with a high risk of bodily fluid contamination. There is some shadowy possible evidence that CMV infection/symptoms/serology might have some correlation with covid vaccination. I don't know if that's the case for me, but if the first bout of sore throat was the initial illness then time of infection would fall somewhere in between contracting covid and having my most recent covid vaccine. Perhaps post winter vomiting/covid immune depression led to me contracting it, while the vaccine somehow accelerated its incubation by acting as an immune decoy? Or perhaps it had nothing to do with either.

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Right now I'm still experiencing tiredness, the odd random ache or full belly area feel, some sleepiness at times, and some brain fog, all intermittently and all vaguely for the most part, so things could be a lot worse! I'm still able to work and do most of my leisure activities, though no jogging or bouldering, for the time being. I don't know how long I'll get episodes of that for, but for now they are manageable with patience, care and understanding. It's good to know it's something definite, real and testable going on, rather than something imagined or exaggerated in my mind. Also good to be off the unnecessary antibiotics!

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I wanted to share my story thus far because it shows how different the reality of glandular fever can sometimes be from the expectation, and how insubstantial and insidious its presentation can be. It also shows the danger that being overly afraid of being a hypochondriac can present. This is something I will always struggle with, having multiple diagnoses, being relatively knowledgeable about medicine, interested in (rare) disease, and thus strict with myself about not imagining symptoms.

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Glandular fever may not always look like the textbooks describe it, and while it may not invariably lay you flat out it can still be significantly inconvenient and even debilitating to a degree that still deserves proper recognition and respect. This atypicality and wide variance is particularly the case for CMV-related glandular fever. The median age of illness within the CMV demographic is also a bit older than that for the EBV demographic. I am 34 and to everyone's knowledge, I have a good immune system - thus making me an unusual candidate for acute CMV-derived symptoms of any kind more severe than a mild cold. CMV often presents with less swollen glands than is stereotypical as well. Most literature says that while CMV can recur in the sense that you can start shedding the virus again in the future once you have no longer become infectious, that recurrence is usually asymptomatic. But in my case, if my illness began in December, and if other episodes of illness since then were in fact also due to it, then it shows how acute CMV infection (if not in some cases chronic) can indeed symptomatically relapse and remit over a period of months in an otherwise immunocompetent person. It's much easier to be kind to yourself, give your body the time needed, and acknowledge how you are feeling, if you know this may be the case.

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It can be hard to keep chasing something with symptoms that are so vague and intermittent, but the white spots helped me keep conviction in my persisting, along with the GP being so supportive, attentive, knowledgeable, and willing to think outside the box.

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