Bedridden with long COVID, now much better with IVIG and low-dose Abilify
- Condition
- Long COVID
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- 2 years
- Last post
- Mar 2025
In their words
- Condition: Long COVID
18 months into long CVD JOURNEY
In context ↗ - At worst: Severe
At one point bed ridden for weeks, hospitalized, lost job, not able to tolerate sound, light, noisy places -- had to teach myself how to read again, slowly.
In context ↗ - Now: Much better
Not at 100%, but 80% is still pretty good
In context ↗ - Began after: COVID
In March of 24, I had what I thought was a mild case of CVD after an international trip.
In context ↗
Read from 17 of their posts and comments; links to the 11 this page draws on
Summary
After a mild COVID infection, he developed severe anxiety, depression, cognitive problems and light/sound sensitivity, became bedridden and was hospitalized for six weeks. Over about two years he improved with IVIG, low-dose Abilify and Cymbalta, therapy, diet, pacing, LDN, supplements and CPAP, but a December 2024 PEM setback forced him back on low-dose Abilify. By late 2024 he worked full time and walked 10,000 steps; in March 2025 he rated himself about 80% of normal, and intense exercise still caused crashes.
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What they tried
What they credit
Also tried
Their words about each treatment
- Lexapro · Worse
they put me on Lexapro, which made the situation worse as I had a bad reaction to the Lexapro
In context ↗ - IVIG · Helped
I believe ivig helped.
In context ↗ - steroids · Not said
The doctors loaded my system with IVIG and steroids
In context ↗ - low dose abilify · Helped
Had to back up and go back on low doze of abilify to get better.
In context ↗ - Cymbalta · Helped
I ended up on low dosage of Cymbalta and abilify.. thta combination worked for me
In context ↗ - mirtazapine · Not said
mirtazapine for sleep
In context ↗ - therapy · Helped
I have gotten much better with time, meds, and therapy
In context ↗ - keto / clean diet / Mediterranean diet, no sugar · Helped
I have gradually improved with meds, therapy, and diet.
In context ↗ - pacing · Helped
Pacing, build up over time, stay with it, do not push harder when you feel good.
In context ↗ - vitamin D · Helped
Supplements: D, B12, omega3, turmeric
In context ↗ - magnesium · Helped
Sleep hygiene + magnesium and melatonin at night.
In context ↗ - LDN · Helped
I also take LDN, small dose of Cymbalta, supplements, and have gone on Mediterranean diet/no sugar.
In context ↗ - anti viral med · Not said
Low dose naltraxone, anti viral med, infusions of D and C.. added
In context ↗ - NAC · Not said
Supplements.D3, Vitamin C, Omega 3, Magnesium, NAC, B.... added some of theses
In context ↗ - cpap machine · Helped
use cpap machine now ... Helped me feel more rested
In context ↗ - Kaplan Center clinic · Not said
clinic called Kaplan center in N.VA
In context ↗
Approaches: CBT & mindset · SNRIs · Diet · Other drugs and medicines · Pacing · Radical rest · Supplements
Their path
How ill they were on the ME/CFS severity scale, estimated from what they describe at each point, with time counted from when the illness began. Hover or tap a point. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were | After |
|---|---|---|---|
| March of 24 | mild CVD after international tripIn March of 24, I had what I thought was a mild case of CVD after an international trip.In context ↗ | Mild | |
| subsequent weeks | bedridden, hospitalized six weeks, could not read or tolerate light/soundAt one point bed ridden for weeks, hospitalized, lost job, not able to tolerate sound, light, noisy places -- had to teach myself how to read again, slowly.In context ↗ | Severe | |
| 2024-10-31 | physically better, working from home, walking a few milesI am physically better, able to get out bed and work (WFH) -- walk a few miles a dayIn context ↗ | Mild | IVIG / subcutaneous Ig |
| 2024-12-01 | serious PEM setback, bedridden for several daysHad my first serious PEM setback - could not get out of bed for severaldays....was on a good path reducing medsIn context ↗ | Severe | |
| 2024-12-07 | back to work full time, walking 10k steps, familyI am back working full time (remote), engaged with my kids and family, walking the dog and 10K steps a day.In context ↗ | Mild | IVIG / subcutaneous Ig |
| 2025-03-10 | back to work full time, 90% healthyI am better. Back to work full time, 90% healthy.In context ↗ | Near normal | Low-dose Abilify / aripiprazole |
| 2025-03-28 | about 80% after keto and CPAP; not at 100%Not at 100%, but 80% is still pretty goodIn context ↗ | Mild | CPAP and sleep apnoea treatment |
Adverse events
- Escitalopram (Lexapro)“they put me on Lexapro, which made the situation worse as I had a bad reaction to the Lexapro” In context ↗ Made symptoms worse
- Escitalopram (Lexapro)“I was having wild / out control intrusive thoughts (57/M) with no history of mental illness, exhaustion, panic attack/anxiety.” In context ↗ Mood or psychiatric effects
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
Still cant exercise intensively without crashing
In context ↗ - Brain fog
concentration level down to zero (could not read or even watch the TV)
In context ↗ - Light & noise sensitivity
not able to tolerate sound, light, noisy places
In context ↗ - Anxiety & low mood
still suffer from fatigue, motivation, and a good doze of fear about gett8ng sick again.
In context ↗ - Sleep problems
found out I had sleep apnea after testing, use cpap machine now.
In context ↗
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