Ill with long COVID and ME/CFS, slowly improved then relapsed after a sinus infection
- Condition
- ME/CFS
- At worst
- Moderate (mostly housebound)
- Ill before improving or writing
- 3 years
- Last post
- Apr 2026
In their words
- Condition: ME/CFS
I've had ME/CFS for 2 years due to COVID
In context ↗ - At worst: Moderate
For three months I have been getting my daily fevers again, totally screwed up sleep, unable to take out the trash or unload the dishwasher.
In context ↗ - Now: Relapsed
I've had a complete, total, 100% backslide ... Three years of agonizingly slow improvement, down the drain just like that.
In context ↗ - Began after: COVID
After my 1st infection in March 2023
Read from 14 of their posts and comments; links to the 8 this page draws on
Summary
They fell ill with long COVID and ME/CFS after a COVID infection in March 2023 and were about 70% recovered at six months, before a tonsillectomy and a January 2024 reinfection set them back. By late 2025 they had improved slowly, crediting two new psychiatric drugs, better symptom management, a lighter schedule and time. A January 2026 sinus infection caused a total backslide with daily fevers, wrecked sleep and chores out of reach.
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What they tried
What they credit
Also tried
Their words about each treatment
- 2 new psych meds · Helped
I've started 2 new psych meds in a different class than I'd ever tried before.
In context ↗ - reducing my schedule, managing stress and long covid symptoms · Helped
I've reduced my schedule and am managing stress better.
In context ↗ - passage of time and spontaneous healing · Helped
Also just the passage of time and spontaneous healing, probably.
In context ↗ - Ultra low dose naltrexone · Much worse
made my fatigue, drowsiness, and brain fog so bad I could barely get out of bed all day
In context ↗ - Hydrocortisone · Worse
severe fatigue and drowsiness and brain fog. Worsened my depression.
In context ↗ - Prednisone · Much worse
Prednisone:l (5mg): same as hydrocortisone.
In context ↗ - Montelukast · Worse
made me very fatigued and drowsy, worsened my brain fog
In context ↗ - Cromolyn sodium · Worse
same as montelukast, plus terrible constant headaches
In context ↗ - Metformin · Worse
Metformin (125mg): fatigue, brain fog, drowsiness.
In context ↗ - THC · Much worse
fatigue and drowsiness, makes my POTS worse (tachycardia, dizziness, etc.)
In context ↗ - Antibiotics · Helped
Antibiotics have helped, then I finish the course and immediately relapse again.
In context ↗ - NSAIDs · No change
I'm not sure it does very much for me
In context ↗ - Antihistamines · Not said
The only anti-inflammatory drugs I have tolerated so far are: ... Antihistamines
In context ↗ - ECGC · Not said
The only anti-inflammatory drugs I have tolerated so far are: ... ECGC
In context ↗ - supplements/herbs · Not said
supplements/herbs, TMS, k*tamine infusions
In context ↗ - other substances · Not said
and other substances
In context ↗ - Sinus, jaw and tonsil surgery · Worse
Then I had a tonsillectomy which set me all the way back, and I felt as though all my progress got erased.
In context ↗
Approaches: Other drugs and medicines · Pacing
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. The chart starts 6 months after onset: the story doesn’t say how ill they were before that. 1 step says too little to place on the scale and is only in the table. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were |
|---|---|---|
| March 2023 | COVID infection, followed by long COVID and ME/CFSI've had ME/CFS for 2 years due to COVID. After my 1st infection in March 2023In context ↗ | Not stated |
| about 6 months after infection (late 2023) | felt about 70% recoveredI was starting to feel about 70% recovered after 6 monthsIn context ↗ | Mild |
| after that (late 2023) | tonsillectomy erased their progressThen I had a tonsillectomy which set me all the way back, and I felt as though all my progress got erasedIn context ↗ | Moderate |
| January 2024 | COVID reinfection, long COVID worse afterwardsAbout 6 weeks after my tonsillectomy, I was unfortunately reinfected (Jan 2024). Since then my long COVID has been worse, with a much slower recovery period.In context ↗ | Moderate |
| January 2025 | 12 months of severe depressionI have been in one long, unending, severe depressive episode. For 12 months straight.In context ↗ | Moderate |
| September 2025 | significantly better, mostly back to pre-COVID baselineI am now starting to feel significantly better. Still depressed and anxious, but nowhere near as bad as when I posted. Mostly back to my pre-covid baseline.In context ↗ | Mild |
| April 2026 | still backslid: daily fevers, wrecked sleep, chores out of reachFor three months I have been getting my daily fevers again, totally screwed up sleep, unable to take out the trash or unload the dishwasher.In context ↗ | Moderate |
Adverse events
- Low-dose naltrexone“made my fatigue, drowsiness, and brain fog so bad I could barely get out of bed all day” In context ↗ Made symptoms worse
- Low-dose naltrexone“Made my migraines 10x worse.” In context ↗ Made symptoms worse
- Low-dose naltrexone“Severely worsened my depression, crying all day every day” In context ↗ Mood or psychiatric effects
- Low-dose naltrexone“intense su*cidal thoughts” In context ↗ Suicidal thoughts or attempt
- Hydrocortisone / cortisol“severe fatigue and drowsiness and brain fog” In context ↗ Made symptoms worse
- Hydrocortisone / cortisol“Worsened my depression.” In context ↗ Mood or psychiatric effects
- Corticosteroid pulses“same as hydrocortisone.” In context ↗ Made symptoms worse
- Montelukast / Singulair“made me very fatigued and drowsy, worsened my brain fog.” In context ↗ Made symptoms worse
- Cromolyn (Gastrocrom, Nalcrom)“same as montelukast, plus terrible constant headaches.” In context ↗ Made symptoms worse
- Metformin“fatigue, brain fog, drowsiness.” In context ↗ Made symptoms worse
- Cannabis (THC, marijuana)“fatigue and drowsiness” In context ↗ Made symptoms worse
- Cannabis (THC, marijuana)“makes my POTS worse (tachycardia, dizziness, etc.)” In context ↗ Heart rhythm problems
- Sinus, jaw and tonsil surgery“Then I had a tonsillectomy which set me all the way back, and I felt as though all my progress got erased.” In context ↗ Made symptoms worse
- “Prep was a bit rough, as it triggered a good amount of POTS symptoms due to dehydration, low blood sugar, etc.” In context ↗ Made symptoms worse
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
Anticipation of the crash that is inevitable after leaving the house
In context ↗ - Brain fog
made me very fatigued and drowsy, worsened my brain fog
In context ↗ - POTS & dysautonomia
I have heat intolerance due to POTS
In context ↗ - Mast cell (MCAS) & allergies
POTS, MCAS, eczema and skin issues
In context ↗ - Sleep problems
totally screwed up sleep
In context ↗ - Pain & fibromyalgia
I do take NSAIDs pretty regularly for pain
In context ↗ - Headaches & migraine
Made my migraines 10x worse
In context ↗ - Anxiety & low mood
Still depressed and anxious
In context ↗ - Flu-like symptoms
I have been getting my daily fevers again
In context ↗
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