Adenovirus in immunocompromised patients like me
April 19, 2023 8:38 AM   Subscribe

YANMD. TINMA. My son missed a week of school with a viral infection. We ruled out COVID and did a virtual visit. The doctor didn't seem to think symptoms warranted further testing. Son's fever got pretty high and he was very tired. Now I'm sick, and as an immunocompromised person I'm also scared this could be adenovirus and don't know what to do.

I went to urgent care a couple of days ago. They tested for strep, COVID and flu. This doesn't feel like a regular upper respiratory infection to me. The fatigue is more powerful. The myalgia and joint pain have been more severe. I've had bizarre cognitive complications like memory lapses, attention worse, emotion regulation issues. I have some of that at baseline but it doesn't usually change due to illness. I'm worried that it's a sign of inflammation.

I've read that adenovirus can be potentially fatal in immunocompromised people. I've messaged the doctor to see if my symptoms are consistent with adenovirus and if I have it, should I be doing anything differently. But I don't know this doctor and I'm not very confident in her so I want other sources of information.

What do I do? I'm so exhausted the idea of going to another medical clinic makes me cry. I just want to sleep. I had mono and CFS in high school and this is that same type of fatigue. I'm a high strung person and usually can't nap even when I'm sick. I've napped several hours the last few days. But the virus doesn't feel like it's getting better. I'm on day 5 and the congestion seems slightly better but a lot of the other symptoms do not. The fatigue and cognitive issues seem a bit worse actually.
posted by crunchy potato to Health & Fitness (13 answers total) 2 users marked this as a favorite
Do you have a rheumatologist or immunologist you see, or a primary care? They would be more attentive to your level of concern. I would not got back to urgent care or another clinic, I doubt they would do anything different.

Were the covid tests antigen/rapid tests, or PCR?

I understand the concern and the instinct, but I don't think symptoms or intensity can really distinguish reliably between those viruses.
posted by Dashy at 8:52 AM on April 19, 2023 [3 favorites]

(sorry but what's TINMA?)
posted by MiraK at 9:43 AM on April 19, 2023

Response by poster: I assume it was a rapid test.
I used one on my son also when he had this virus.

TINMA= this is not medical advice.

The urgent care is in the same place as my PCP but I took your suggestion and messaged my rheumatologist to see if she would be willing to order labs or something.
posted by crunchy potato at 9:50 AM on April 19, 2023 [2 favorites]

Hello, fellow zebra! Check your memail.
posted by headnsouth at 9:56 AM on April 19, 2023 [1 favorite]

I would get a PCR test for covid, if you're still within the 5-day window for Paxlovid. False negatives are not uncommon for the rapid tests.
posted by Dashy at 11:38 AM on April 19, 2023 [4 favorites]

Did they stick a long swab waaaaaaay up your nose and then call/email you with results, or just swoosh around in the lower nostril some and then tell you were fine? That's how you can distinguish. I'd be surprised to hear urgent care didn't do a PCR unless requested not to. The reimbursement is better and these days there's not really a meaningfully longer wait.
posted by praemunire at 11:42 AM on April 19, 2023

Another vote for PCR test so that you can take Paxlovid if you’re positive. Newer variants are much harder to detect on tests now.
posted by quince at 11:51 AM on April 19, 2023

Response by poster: Swab in office, results 20 minutes later. I insisted they let me do my own swab because the nurse was really upsetting me. (This virus has me super weirdly emotional and reactive to everything, I suspect because of the inflammation. I'm never 100% happy and pleasant when I am unwell but this is markedly different and part of why I am concerned.) She monitored my work, and I am sure she would have corrected me if my technique weren't adequate.

This is day 5 so Paxlovid would be out. I've had the two dose vaccine and both doses of the booster, and got Omicron once. But I also had a treatment that killed all my B cells since all of that so I'm not sure how that affects my immunity.
posted by crunchy potato at 12:05 PM on April 19, 2023

Best answer: An adenovirus is no joke.

I will memail you my specific circumstances with it (I rejoined Metafilter just to make this comment)!

In general terms, testing for an adenovirus is expensive and most places won't do it. What they will do is rule out Covid, RSV, flu A and B, strep, etc.

If an adenovirus is going around at a child's school, odds are it could be that.

What we saw in our daycare/ school community was pink eye, fever that wouldn't break for days, very harsh cough, etc. There are complications which I will write to you about.

All of my information about this virus I had to glean from Mayoclinic and trusted sources online.

Doctors know about it and will just say yes there are viruses going around. But unlike Covid, there is no public discourse on what an adenovirus is. There are no vaccines for it unless you are in the military.

So we are actually worse off getting an adenovirus. At least with covid, folks are vaccinated and there's ample testing.

So I would say, believe the negative covid tests and try to figure out (ask your doctors) what virus you have and ask them if it could be adenovirus.

People online will say oh its covid without realizing no, there are other viruses worse than covid. Take care.
posted by AnyUsernameWillDo at 1:22 PM on April 19, 2023 [4 favorites]

Hi! I'm so sorry. That is immensely upsetting and stressful to navigate. I am also immune compromised and went through something similar right down to the intense irritation and emotional disregulation. It ended up being CMV so it might be worth checking for that and/or a reactivation of your mono. I'm on a prophylactic antiviral now that is making a huge difference in the number of infections I need to deal with. Feel free to PM me and hang in there.
posted by jeszac at 1:54 PM on April 19, 2023 [2 favorites]

What parents should know about adenoviruses. This is a good overview.
posted by AnyUsernameWillDo at 12:34 PM on April 21, 2023 [1 favorite]

Response by poster: I just got confirmation via chest xray that I have pneumonia. It's on one side so presumably it's bacterial vs primarily viral. Which probably means it's not directly from the virus I originally caught so it's not technically "adenovirus pneumonia" so I am not as anxious now. I was reading about adenovirus pneumonia having a 50% fatality rate in the immunocompromised and was freaking out.

They did listen to my lungs at the appointment 5 days ago, so I developed pneumonia some time since then.

Also developed double pink eye after writing the OP which further suggests I am correct that this was an adenovirus situation. Those that think it was just a false negative for COVID, that is probably not correct and I'm glad I listened to my intuition.

For as serious as adenovirus can be in certain populations, the medical world seems really lackadaisical about it. And, I read that certain higher intensity outcomes of adenovirus are rare but if they rarely test for it then how would they even know?

This has been exhausting. Hopefully this info will help others in the future if they are struggling with similar concerns. If you have instincts pushing you to pursue a specific scenario, trust that until you have proof not to!
posted by crunchy potato at 2:36 PM on April 21, 2023 [4 favorites]

Oh no, I hope you are getting all the support you need to heal. Thank you for the update and I'm glad you followed up with your doctors.

Yeah, my otherwise healthy child developed a complication from adenovirus and was hospitalized, which seemed out of the blue to me. I had never heard of adenoviruses before. But they are common and have been around and depending on your doctor and situation you could get different opinions about it since they don't test for it automatically.
posted by AnyUsernameWillDo at 11:13 PM on April 21, 2023 [1 favorite]

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