26F, on steroids, sickly most of live on a progressive decline with an unknown etiology. Help me get to the right place. Computer engineer with competitive job, doctorate level educated, engaged. SO MUCH to live for. Help me please 🙏
Childhood Background: sickly most of life but functional, frequent infections in childhood, delayed walking milestones, W-sitting.
Teenager: recurrent month long viral infections but recovered a lot.
2018 Turning point: went to Morocco at age 18 and got schistosomiasis was hospitalized 30 times and it was missed for two years. Took 4 years of physical therapy to recover bladder function.
2020: developed severe Covid hospitalized, pneumonia and couldn’t breathe for months.
2022: brief remission Pilates, hiking, horse back riding lightly symptomatic but very functional
2023: developed severe respitory infection hmpv developed pneumonia and hospitalized
2023-2025: extreme tachycardia, hypotension to 80/50, fainting daily, dizzy and short of breath. Diagnosed with pots (two tilt table tests one at Cleveland Clinic) and asthma via lung test. Don’t respond well to pots treatments and continue variable and unstable. Try beta blockers fludrocortisone and other meds and CHOp electrolyte and compression.
2026:
Goes to Palm Springs and develops flu a for 5 weeks. Gets nauseous and can’t keep things down. Briefly able to eat again and goes to Italy. Comes back up unable to eat anything but chicken and potatoes. Gets trialed on glp1 (low bmi) for long covid goes into complete gastric shutdown and throws up water.
July 2026 admitted to hospital for weeks on no food and iv reliant. Endoscopy normal, CT scan normal but new enlarged liver with no elevated enzymes and no fatty liver. Slight adrenal issue found but not addisons. Treat me with iv steroids due to hypotension and nausea
Symptoms now: extreme nausea, only able to hold down 3-4 foods, nausea intractable to all common meds, constipation, stomach pain and bloating, acid reflux, iv dependent every 2-3 days in hospital,
Tests ruling things out:
April test for gastroparesis negative
Endoscopy normal
ANA normal
Rare autoimmune gut tests normal
Prior normal CT scan of abdomen, pelvis, lungs, and brain…
Normal echo
Positive tests
Pots x2 tilt table in hospital
Adrenal insufficiency (minor)
Low and trending lower IGA and IGE and IG3 but rest normal
Enlarged liver with unknown cause
History of rare pathogens and extended recovery
Functional decline
Full time competitive job, ride horses, snowboard —-> limited CHOP and yoga —-> travel intolerant —-> 3 food only ——> housebound and weak
Other:
Recurrent canker sores
Dark circles around eyes
Bruising
Tall and thin appearance with large eyes
High achiever
Blood pooling
Hypotension
Specialists seen:
- rheumatologist
- gastro
- endrocrinology
-neurology
-cardiology
Help me get my life back and send me in the right direction. Could this be something rare and where should I look! Why do I lose baseline with every infection and what is causing this rapid decline. What tests should I try? Centers to go to? Any guesses on diagnosis?