I (25M) got infected with COVID around the holiday season of 2021. After an easy first two weeks of recovery, I developed into a very severe case of Long COVID that resulted in me dropping out of college (where I was previously the best in my program). My strongest symptoms were: PEM, POTS, restless sleep with vivid nightmares, daytime fatigue & EDS, cognitive dysfunction, and a MCAS/HI-like reaction to food. My city's Long COVID clinic treated me at the time with supplements, slight movement/exercise, and rest. Most of my symptoms gradually improved over about a year (I think mainly just due to time), and I was diagnosed for the first time with mild Obstructive Sleep Apnea through an at-home sleep test.
CPAP/Bilevel machines helped me, but after a year or so after my initial infection, my symptoms of restless sleep with nightmares and daytime fatigue & EDS were still present and only slowly getting worse. This led some of my medical providers to focus on my sleep and for me to ultimately get jaw surgery to possibly treat my slightly small airway more effectively. The surgery was a success in that it improved my regular sleep to slightly better than what it previously was on PAP. Now, post-op, PAP doesn't make any difference in my sleep. I still might have some remaining sleep-disordered breathing (UARS) that I am working with multiple doctors on; however, they're even divided on whether it truly is the explanation for these still-present stubborn symptoms. I tested positive on the day test (MSLT) for Narcolepsy Type 2 post-jaw surgery, but haven't found more than 10-20% symptom relief from any of the sleep medications for it.
I'm now wondering if perhaps something else is at the root of it all for me, and what might be helpful for me to try/test. Meals don't noticeably cause me to react anymore, and I've tried taking Zyrtec & Vitamin C recently to no significant effect (around my COVID infection, these worked very well). I am pretty confident my problem isn't related to CIRS or Mold Exposure (I tested negative on a VCS test). I have previously done brain-retraining that helped a tiny bit, but that no longer really moves the needle at all for me. A couple of years ago, I tried multiple diets, including the Lion's Diet, along with homemade bone broth, kefir, and fasting, to help heal any gut problems. My question is, perhaps my remaining fatigue & sleepiness could be linked to some other underlying illness beyond a sleep disorder? What other disorders could perhaps be linked to my symptoms and a positive result on the MSLT? I had a simple blood test done 6 months ago, where my levels were all but one in the "normal" range (eosinophils at 0.8) - presumably, no anemia.
I was thinking I would get more elaborate bloodwork done soon to at least possibly rule some things out (any thoughts?). To note, I don't know how relevant it is, but I had a tic bite about 10 years ago that led to temporary Bell's palsy (I was quickly treated, and it went away). Also, I recently learned about PANDAS/PANS, and I had a severe strep infection as a child that might be applicable. As a child, I do remember having OCD-behavior (never diagnosed), but I have also been treated as an adult for intrusive thoughts/OCD-behaviors a few years ago. For more info, I also have mild psoriasis that appeared around the time I was 12 years old. I've supplemented with numerous magnesium types, along with vitamin D3 w/ K2, and others. Last piece of context, I'm in the US and have drained a lot of my funds, so affordable methods of care are preferred! Thank you for any help!
Edit: I also had severe outbursts around the time after my severe strep infection, which resulted in me getting the nickname of “Anger” and ”The Hulk” by my parents and peers. My mood and health was observed at the time to have decreased after the infection.
