Too sick to access standard care - looking for advice - located in PA. Thank you.
Anyone else in here with severe ME/CFS who can’t safely access standard medical care due to how sick you are? I’ve had multiple post-viral crises over the last 15 years and my new primary care doctor instantly said she thinks I have a chronic relapsing form of AE but I’m too sick at this point for invasive testing to confirm or for standard treatment options. I am unable to safely attend in person appointments or go to the ER where they don’t understand any of this. Looking for advice on how to get help without wrecking my baseline. I’ll post a brief summary about my history and my current baseline function. Not sure if I’m so sick from so many years of untreated AE or if I have both ME/CFS & AE. Either way I need help. Thank you so much for any guidance.
History:
35yo female, bedbound & housebound with severe “ME/CFS” & POTS/dysautonomia, with a history of unresolved PANS, chronic relapsing progressive neuroinflammation & extreme acute critical episodes of sudden systemic, neuropsychiatric & neurological collapse within 2-8 weeks after viral triggers (HSV2/COVID/Influenza) lasting months, with each resulting in permanent & progressive worsening of baseline function. Core features of acute critical episodes include sudden onset of near-psychosis, flu-like body aches & malaise, severe cognitive impairment, short term memory deficits, awake central apneas (manual breathing), convulsive loss of consciousness with incontinence (possible seizures), episodes of catatonia resembling absence seizures, extreme weakness & fatigue, sleep/wake instability, cyanosis of the lips & nail beds, extreme darkening around eyes, HPA axis collapse including loss of body hair & growth of lanugo hair, fluctuating lethargy, changes in awareness, severe episodes of hypotension (as low as 80/50) with delirium & hallucinations, extreme headaches, persistent fevers, sudden increased sensitivity or intolerance to meds previously taken, episodes of shaking/shivering, episodes of near paralysis & other neuropsychiatric, neurological, metabolic & autonomic symptoms.
Ongoing sequelae & deterioration of baseline have continued, despite partial recovery from acute crises.
Current function at baseline (flares make it much worse):
Bathing - Assisted seated shower every 4-6+ weeks; each triggers tachycardia, lightheadedness, adrenaline surges, neuropsychiatric flares and flu symptoms lasting days; caregiver uses wipes weekly to clean me as much as possible, as doing it myself causes crashes
Toileting - Requires assistance during flares
Feeding - Cannot prepare meals; eats in bed; small snacks can trigger BP drops or surges; requires assistance during crashes
Mobility - Mostly bedbound except for toileting; maximum standing 3–5 minutes or seated 10 minutes max on a lower symptom day (sitting up in bed only, can’t put feet on floor for more than 2 mins) - sitting up or standing leads to instant worsening of symptoms, often unable to be upright at all during flares & have to remain supine all day, even eating or drinking (roll onto and prop up head a bit to eat)
Overall - 22+ hours/day in bed, mostly reclined with feet elevated; strict pacing; rolling symptom flares from simply existing despite maximum pacing efforts; I am sometimes technically “able” to do minor tasks but they result in worsening of symptoms. My life revolves around minimizing symptoms & avoiding major/dangerous prolonged flares.