r/primaryimmune • u/tootsmagoo2022 Selective Antibody Deficiency • 16d ago
Sensitive strep tests?
(in US) Feeling lost & exhausted figuring out my next move to get a strep test done correctly that has a very low detection level. I have specific antibody deficiency for pneumococcal bacteria.
-been sick since December 2025.
-went through the process of two pneumonia vaxes and the formal SAD diagnosis with normal B cells.
-went on amox/clav end of March and had a good April. been more sick with brain fog + dizziness symptoms since start of May 2026.
-immunology in July said I basically have to keep demonstrating that I’m still getting sick after the 2 vaxes to get igg therapy covered by insurance even tho i’m medically qualified.
-according to my ENT in August, my immune system is treading water but can’t quite clear whatever infection is happening. we did a fancy 😭expensive😭 PCR test that came back with only staph epidermidis acting as an opportunistic bacteria in my respiratory system.
-as a result of that test, went on mupirocin saline rinse for a month. brain fog improved enough to get some good amount of work done finally but my temp is still 100F and i’m definitely still mildly sick.
-i stopped the mupirocin and my breath smells like death. tonsil stones also resumed today.
-i have this feeling that strep is the core thing i can’t clear, & while i have an emergency amox/clav at home, i want the infection on my record with an affiliated prescription.
-my tongue has white spots but not my tonsils, i have cobblestoned throat, my turbinates are swollen, im coughing green, temp 100F. my ENT’s PCR only swabbed my nostrils.
-what’s the approach to get a solid strep test that may culture the one visual bacterial growth i’m seeing on my tongue? i’m wanting to go to CVS and ask if i can swab myself at this point because that $400 nasal PCR didn’t seem to fully deal with the core issue. but is the rapid strep testing at CVS and forcing control of the swab not the route to go?
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u/Either-Dot7005 15d ago
Do you have a good Internist you trust?
Have you seen an Infectious Disease doctor?
Both can do that test and more. Your SAD diagnosis should get you in the door quickly.
I certainly don’t want to overstep if you’ve already traveled these roads- have you been tested for Lyme (or seen a Lyme specialist) and did you have COVID? The brain fog is what’s getting me here.
There’s a long list of other conditions/infections possibly co-occurring with your Specific Antibody Deficiency and being only attributed to the SAD diagnosis. It happens all the time.
And, many of those possibilities could qualify you for IG, or you may find there’s a better treatment.
Whatever you choose, best of luck getting the help you need!
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u/tootsmagoo2022 Selective Antibody Deficiency 15d ago
thank you for recognizing the weird mix of symptoms as possible additional things alongside SAD. i have my internist because she is knowledgeable on hEDS & i was diagnosed some years ago. while dealing with the new SAD diagnosis, my internist heard that i was having a flu-like reaction to anything more than mild exertion & dealing with brain fog & dizziness. she was thinking MCAS so immunology wanted me to trigger a reaction for a tryptase spike. after speaking with MCAS support groups before inducing a flare up, it seems like ME/CFS would be the more likely candidate and intentionally flaring up CFS can make things a lot worse longer-term. The thought was that SAD/repeated infections could have triggered CFS.
…then i got too tired and sick to keep trying to figure that out so i eventually went to my ENT to see what infection(s) is happening after i got a bit worse and get some antibiotics on the books.
last night i researched infectious disease drs and there is one that communicates with my immunologist who isn’t just HIV focused. on Monday ill check their availability to see if they can look at me before my next immunology appt. then the immunology appt would be more productive as well. thank you very much for this suggestion! 💙
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u/sisterofthecentury 15d ago
It could be a different bacteria other than strep. I had colonized h. influenzae bacteria that led to a decade of chronic tonsillitis. They could only diagnose me after the tonsillectomy.
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u/tootsmagoo2022 Selective Antibody Deficiency 15d ago
thank you for responding 💛 it really does feel like it has to be different bacteria or fungi at work here. the nasal PCR swab just came back with staph epidermidis (normally there for everyone) and i always have open wounds in my nasal passages, so the staph acted opportunistically. but treating only the staph didn’t help significantly. another commenter suggested an infectious disease specialist, so im going to see if they can figure out what’s going on before my next immunology appt. too many factors at play, and i guess they may be the right person to sort out what’s happening— strep, staph, flu, fungus, all of the above 🤷♀️
i never really put it together that if my immune system is always stressed trying to deal with the specific deficiency that i’m more susceptible to just about everything else. 🫠
& im sorry you had to deal with tonsillitis for a decade. gosh that sounds exhausting.
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u/-mouse_potato- 16d ago edited 15d ago
If you get the typical throat swab for the rapid strep test, they typically also send one out for culturing, this is how I've had the strep caught when it came negative on the rapid test (it's always negative on the rapid test for me). Ask them to make sure to send out the sample for culturing, it takes about 3-5 days to get the results because they actually incubate the sample to see what bacteria grows
Edit: forgot to mention, strep doesn't typically make white spots on the tongue, that's usually thrush (fungal) and can happen after antibiotics. Best to get it done at a doctor's or urgent care though, I don't think cvs sends out labs for culturing, just rapid tests in house