Got COVID for the first time in March 2025 and it’s been 9 months of chronic fatigue, brain fog, hard to describe shortness of breath (not really linked with exertion, but just kinda random), repeated sinus and upper respiratory infections, very random and nonspecific inflammatory markers and just generally feeling like complete shit. Basically it’s been like having a constant flu that flares up randomly and never really goes away completely.

Back and forth to the same PC and multiple specialists: respiratory therapist, allergist, rheumatologist, ENT, and even a neurologist.

Kept begging for help but was told either “I’ve done what I can not sure what else to do.” or “Yeah those are abnormal results, but I’m not concerned because cutoff values can be arbitrary and everything is pretty non specific.” Which seems like an understandable answer when you have one weird lab value that doesn’t fit in with a specific diagnosis, but when you have multiple abnormal values all pointing to “something” driving chronic inflammation and fatigue for several months, it seems kinda weird to just dismiss it right?

Anyway after several doctors just treating me like I was just malingering/making shit up, I saw an ENT who couldn’t help me, but did actually listen to me. He recommended I go see another allergist/immunologist who focuses more on the immunology side than allergy.

I figured it was a waste of time, but when doctors started putting in my chart that I was “refusing” to try things like CBT and physical therapy I figured what the hell, might as well give it a shot.

I went in with a folder full of paperwork ready to explain all my weird nonspecific blood work and how I know this “sounds crazy” but the only thing that seems to help me is azithromycin but not other antibiotics.

Jfc every single doctor I saw just kept telling me over and over that an antibiotic helping my symptoms made no sense, and assumed I was just saying give me an antibiotic so I can pretend it’s doing something to make me feel better. When I tried to explain it was very specific to azithromycin, but not other antibiotics, and that I suspected it was maybe more due to the antiinflammatory effects of azithromycin, they usually just rolled their eyes like I was crazy and didn’t know wtf I was talking about (because the truth is they didn’t fucking know).

Anyway, turns out that even though allergy and immunology are the same specialty, some doctors focus more on one or the other. Before I could even go down my long winded explanation about azithromycin, this doctor interrupted me and said “yeah azithromycin is kind of a crappy antibiotic, but it has really great anti-inflammatory properties. We give it to kids with immune deficiencies all the time and it’s like a night and day difference.”

Then while I was just kind of sitting there with my jaw dropped that this doctor wasn’t going to tell me how stupid and crazy my reality was, she skimmed over my blood work from the allergist I had seen in August, and noticed that (speaking of arbitrary lab cutoffs) my IGG subclass 1 level wasn’t flagged as low, but it was sitting right at the cutoff value of 382. 95% of the population has IGG1 subclass levels equal to or higher than the value I had in August.

She then looked at my streptococcus pneumoniae antibody panel and saw most of my antibody levels were low. She told me most of my symptoms seem to line up with IGG 1 subclass deficiency, but to know for sure, I would need to retest my antibody levels after getting pneumovax to see if I could generate antibodies. She also gave me a months worth of azithromycin to take as a prophylaxis in the meantime so I could “feel like a human again.” I couldn’t believe I wouldn’t have to go begging other doctors every time I got so sick I could barely move, only to be treated like I was making shit up and “pill seeking” a fucking antibiotic.

I literally just started crying. After 9 months of being gaslit, ignored, and dismissed, while I begged for help and kept trying to explain to doctors that I could tell something was wrong, (not to mention trying to explain my friends, family, and coworkers that, no, I wasn’t just suddenly being really distant, lazy, and irresponsible), I finally had an answer from a visit for a second opinion, that was only about 20 minutes long, and that I went into assuming it would be another waste of time that just left me feeling hopeless.

I got my post vaccine blood work back today, and it definitely seems like the immunologist hit the nail on the head. I’m supposed to follow up about it soon, but if looks like my body successfully built antibodies in response to the vaccine to all of the streptococcus pneumoniae serotypes except for 23 (23F). It’s still the same value (<0.3 mcg/mL) that it was back in August, and now my IGG1 subclass level has officially decreased low enough to actually be flagged as abnormal.

I don’t really know where I go from here. I don’t know if there is a getting better or back to my old self vs. just trying not to get sick, but I am grateful I didn’t allow myself to be gaslit into believing that this was all in my head. Or that by focusing on CBT and training myself to ignore my body falling apart, I would have somehow made a miraculous recovery. Most likely I would have just felt worse about myself, and fallen further into the trap of self doubt and convincing myself when I didn’t miraculously get better, it was probably because I didn’t want to get better.

At that point, I’m pretty confident I would have actually been dealing with a mental health issue caused by being repeatedly gaslit and ignored while begging for help with something that other people couldn’t see.

It makes me so fucking angry to know how often this kind of thing happens to people, and to know that in many ways I’ve actually been really lucky. I’m lucky that I only lost a little under a year of my life, that I had the resources to seek other opinions when doctors kept dismissing me, and that I actually found a few doctors among some really shitty ones, who were at least willing to just listen to me even if they didn’t know how to help, instead of just defaulting to the assumption that if they couldn’t figure out a diagnosis, then the symptoms were imaginary.

Fuck that. Fuck anybody that tries to discourage you from getting answers. And fuck anybody that tries to gaslight you and tell you that you aren’t really experiencing or feeling what you are telling them you’re experiencing and feeling.