Long COVID
Mild → no benefitIll for 6 years
Long COVID with lung scarring and heart failure, still declining, treatments no benefit
- Condition
- Long COVID
- At worst
- Mild (working or studying, with limits)
- Ill for
- 6 years
- Last post
- Oct 2026
In their words
- Condition: Long COVID
6 years. I'm an OG long hauler.
In context ↗ - At worst: Mild
I work 24 hours a week in a low level job at a schedule that is very optimized for me. I can barely do it.
In context ↗ - Now: No benefit
Basically nothing has helped me get better. I'm in a slow decline.
In context ↗ - Began after: COVID
Covid wrecked my heart and gave me chronic fatigue.
Read from 29 of their posts and comments; links to the 18 this page draws on
Summary
Fox 65158 had long COVID from 2020 after covid pneumonia that scarred their lungs and left heart failure. Six years on they were in a slow decline, working 24 hours a week and barely managing it. Nothing moved the needle much: LDN and guanfacine did nothing; amantadine gave a little less fog and speech therapy helped executive dysfunction. Pulmonary rehab and Mestinon made them permanently worse.
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What they tried
Also tried
lots of liquid· Helpedoccupational therapy / concussion rehab· Helpedspeech therapy· HelpedFODMAP diet· Helpedextremely set schedule and moonlight· Helpedavoiding leftovers· Helpedamantadine· Helpedumbrelvy· Helpednicotine patches· No changeLDN· No changeGuanfacine· No changepulmonary rehab· Much worseMestinon· Much worsehigh protein diet· Not saidmeds· Not saidtherapy· Not saidHypnotherapy· Not saidEMDR therapy· Not saidacupuncture· Not saidlymphatic drainage massage· Not saidno high altitudes· Not saidablation for afib· Not said
Their words about each treatment
- nicotine patches · No change
Just like everything else, zilch, zip, nada.
In context ↗ - pulmonary rehab · Much worse
I went to pulmonary rehab where they were supposed to be supervising me to prevent crashing and I became permanently worse from being pushed too hard.
In context ↗ - LDN · No change
i know lots of people got help with LDN, but it was just worthless to me.
In context ↗ - lots of liquid · Helped
I don't feel any different, but it seems to cut back on how dizzy I feel. I drink a lot of liquid overall, like 160 oz per day.
In context ↗ - occupational therapy / concussion rehab · Helped
Occupational and speech therapy really helped with some of my executive dysfunction issues.
In context ↗ - high protein diet · Not said
I need to eat a high protein diet to combat constant anemia
In context ↗ - Mestinon · Much worse
Mestinon twice a day made me permanently worse after only 2 weeks.
In context ↗ - meds · Not said
I have a long history of depression and anxiety but have always been in treatment (meds and therapy).
In context ↗ - Hypnotherapy · Not said
Hypnotherapy, EMDR therapy, concussion/brain rehab, speech therapy for executive dysfunction, acupuncture, lymphatic drainage massage, no high altitudes (I live at 600 ft), ablation for afib.
In context ↗ - FODMAP diet · Helped
It doesn't make my LC symptoms improve but I feel better overall Gi-wise.
In context ↗ - extremely set schedule and moonlight · Helped
I keep an extremely set schedule. ... the rhythm of moonlight helped me get on track
In context ↗ - avoiding leftovers · Helped
I just avoid leftovers and that helps a lot.
In context ↗ - Guanfacine · No change
Guanfacine did nothing.
In context ↗ - amantadine · Helped
Little less fog, little easier to make decisions, not quite as tired.
In context ↗ - umbrelvy · Helped
I take umbrelvy when I have one. It works pretty well for me but it's very expensive.
In context ↗
Their path
What they say at each step doesn’t fit the worst point or outcome above on the severity scale, so the steps are listed as they describe them. Dates are when they posted.
| When | What happened | After |
|---|---|---|
| 2020 | COVID pneumonia at onset, hospitalised and kept aliveI had actual coven pneumonia and fortunately I live near an academic medical center so they kept me alive.In context ↗ | |
| — | pulmonary rehab pushed me too hard, permanently worseI went to pulmonary rehab where they were supposed to be supervising me to prevent crashing and I became permanently worse from being pushed too hard.In context ↗ | Graded rehab and self-made programmes |
| — | Mestinon caused a permanent decline within two weeksMestinon twice a day made me permanently worse after only 2 weeks.In context ↗ | Mestinon / pyridostigmine |
| 2026-05-06 | occupational and speech therapy helped executive dysfunctionOccupational and speech therapy really helped with some of my executive dysfunction issues.In context ↗ | |
| 2026-06 | husband died suddenly in June, decline got worseMy husband died rather suddenly in June and it's been even worse than I expected.In context ↗ | |
| 2026-09-18 | amantadine gave slightly less fog; still working 24 hours a weekLittle less fog, little easier to make decisions, not quite as tired.In context ↗ | Amantadine |
Adverse events
- Graded rehab and self-made programmes“I went to pulmonary rehab where they were supposed to be supervising me to prevent crashing and I became permanently worse from being pushed too hard.” In context ↗ Made symptoms worse
- Mestinon / pyridostigmine“Mestinon twice a day made me permanently worse after only 2 weeks. ... It was the worst thing I ever did other than pulmonary rehab for permanently sending me backwards.” In context ↗ Made symptoms worse
Symptoms mentioned
Anxiety & low moodBrain fogGut problemsHeadaches & migraineHeart symptoms & palpitationsPOTS & dysautonomiaPost-exertional malaiseSleep problemsVision problems
Their words about their symptoms
- Post-exertional malaise
they were supposed to be supervising me to prevent crashing and I became permanently worse from being pushed too hard
In context ↗ - Brain fog
Little less fog, little easier to make decisions, not quite as tired.
In context ↗ - POTS & dysautonomia
I don't feel any different, but it seems to cut back on how dizzy I feel.
In context ↗ - Headaches & migraine
if I get a migraine and I don't have rescue medicine I will start vomiting from pain
In context ↗ - Gut problems
I already have a slow gut + IBD
In context ↗ - Heart symptoms & palpitations
I have EDS so covid made everything worse topped off with heart failure
In context ↗ - Sleep problems
the rhythm of moonlight helped me get on track
In context ↗ - Anxiety & low mood
I have a long history of depression and anxiety but have always been in treatment (meds and therapy).
In context ↗ - Vision problems
they figured out that my eyes weren't tracking right from brain damage
In context ↗