Long COVID
Severe → much betterIll 3.5 years before improving or writingNeeds ongoing treatment
Long COVID with collapses from minimal exertion, much better after time and rest
- Condition
- Long COVID
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- 3.5 years
- Last post
- Aug 2023
In their words
- Condition: Long COVID
I’ve had Long Covid since before there was a pandemic
In context ↗ - At worst: Severe
I was extremely ill for literally 14 months, almost hospitalized for many of those months.
In context ↗ - Now: Much better
I range between 50-70% recovered. 43 months in currently.
In context ↗ - Began after: COVID
Got OG covid in late 2019/early 2020
In context ↗
Read from 141 of their posts and comments; links to the 44 this page draws on
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Summary
Crest 65804 developed long COVID after an infection in early 2020. He was extremely ill for about 14 months with lung infections and collapses from minimal exertion, close to hospitalisation. He credited time and rest for gradual gains, reaching about 70% of former abilities by around 32 months. Reinfections set him back; by March 2023 he was still at roughly 50-60% of former abilities, needing breathing medicines and not back to his old life.
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What they tried
What they credit
Also tried
psilocybin mushrooms· Helped a lotprednisone / steroids· Helpedfamotidine· Helpedgaviscon· HelpedDuoNeb / Combivent (albuterol with ipatroprium bromide)· Helpedclonazepam· Helpedtoradol· Helpedprobiotics· Helpedepsom salt baths· HelpedModerna covid vaccines (4 doses incl. bivalent)· Helped · wore offtherapy· Helpedcold packs· Helpeditraconazole (cytotoxic antifungal treatment)· WorseCBD· WorseRemeron (mirtazapine) and other psych meds· Much worseazithromycin, doxycycline, amoxiclav· Not saidazithromycin, doxycycline, amoxiclav· Not saidazithromycin, doxycycline, amoxiclav· Not saidadderall· Not saidspirometer and OPEP· Not said
Their words about each treatment
- prednisone / steroids · Helped
I feel really good on low dose steroids
In context ↗ - azithromycin, doxycycline, amoxiclav · Not said
azithromycin didn’t clear it up, and doxycycline didn’t clear it up, and amoxiclav didn’t clear it up
In context ↗ - itraconazole (cytotoxic antifungal treatment) · Worse
Stuff made me depressed and I definitely saw shit out of the corners of my eyes
In context ↗ - famotidine · Helped
I ran out of famotidine a couple days ago and it’s been really bothering me so I know it’s been helping when I take it.
In context ↗ - gaviscon · Helped
and gaviscon before bed. It’s helped with the breathing stuff
In context ↗ - DuoNeb / Combivent (albuterol with ipatroprium bromide) · Helped
DuoNeb helps me a ton. ... I’m using my inhaler 5-7 times a week, down from 4 times a day following nebulizer use in 2021.
- medical cannabis · Helped
I definitely had the best 2-3 months since Jan 2020 when I was using cannabis for a few months before getting covid again this last December.
In context ↗ - CBG · Helped
CBG actually helps me a lot, I was going to mention.
In context ↗ - CBD · Worse
CBD actually triggers my panic disorder.
In context ↗ - adderall · Not said
I was on adderall when I had covid and immediately after. Had to stop taking it due to post-covid sinus tachycardia.
In context ↗ - clonazepam · Helped
Clonazepam for myoclonus is all that’s worked for me but that stuff is the Devil.
In context ↗ - Remeron (mirtazapine) and other psych meds · Much worse
Last time I tried was Remeron and depending on who you ask I suffered anaphylaxis, a cardiovascular event or a stroke…
In context ↗ - toradol · Helped
Got a toradol shot and that helped some but it’s just a bandaid to keep me going.
In context ↗ - psilocybin mushrooms · Helped a lot
I’ve been using psilocybin mushrooms for almost 2 weeks and have gone from being on prednisone and using a nebulizer every 4 hours while awake to now being off steroids and using an inhaler every other day or so.
In context ↗ - listening to my body / rest · Helped
I’ve just listened to my body for the last year or year and a half instead of pushing myself and that’s when I’ve improved the most
In context ↗ - time · Helped
Only time has helped me, and rest
In context ↗ - probiotics · Helped
Probiotics seem to help some but I don’t remember to take them regularly enough.
In context ↗ - epsom salt baths · Helped
Oh, and epsom salt baths for when it’s happening. Those help me a ton.
In context ↗ - Moderna covid vaccines (4 doses incl. bivalent) · Helped
the bivalent gave me the best 6 weeks of health since 2019 once I got over the vaccine side effects
In context ↗ - therapy · Helped
I’ve been in therapy off and on for around 33 years and I’ve found that around 15-20% of therapists actually can help me.
In context ↗ - spirometer and OPEP · Not said
spirometer and OPEP once an hour to clear mucus
In context ↗ - cold packs · Helped
Cold packs kinda help.
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. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were | After |
|---|---|---|---|
| late 2019/early 2020 | COVID-19 infection and start of long COVIDGot OG covid in late 2019/early 2020In context ↗ | Severe | |
| 2020-2021 | worsened for 12-15 months, nearly hospitalised, fungal lung infectionI got worse and worse for like 12-15 monthsIn context ↗ | Severe | |
| spring 2021 | stabilised after 16 months; off steroids, antibiotics and antifungals16 months total from onset of covid to the word “stabilized” being usedIn context ↗ | Moderate | |
| 2022-09 | plateaued at 60-70% recovered; best monthsI was like 60-70% recovered for a few months after 32 monthsIn context ↗ | Mild | Time and spontaneous remission |
| 2022-12 | COVID reinfection; back on nebulizer, barely able to do anythingI was back to like 60-70% recovered around the 3 year mark and got covid again and now I can barely do anything and need a nebulizer every 4 hoursIn context ↗ | Severe | |
| 2023-03 | back to 50-70% and off nebulizer/steroidsMonth 39 I was back to 50-70% and back off the nebulizer and steroids for a couple months.In context ↗ | Mild | Time and spontaneous remission |
| 2023-07-06 | suspected COVID reinfection after restaurant meal; steroids and feverMy care team thinks I caught covid again 2 1/2 weeks ago so I’m kinda going through it, on steroids but fever coming back.In context ↗ | Moderate | |
| 2023-07-18 | psilocybin; off prednisone and nebulizer, inhaler every other dayI’ve been using psilocybin mushrooms for almost 2 weeks and have gone from being on prednisone and using a nebulizer every 4 hours while awake to now being off steroids and using an inhaler every other day or so.In context ↗ | Mild | |
| 2023-08-06 | 50-70% recovered, bumpy after reinfections; not back to old lifeI range between 50-70% recovered. 43 months in currently.In context ↗ | Mild |
Adverse events
- Itraconazole (Sporanox)“I got thrush while on hardcore systemic antifungal medication for aspergillosis after three bacterial infections secondary to covid in early 2020.” In context ↗ Other
- Corticosteroid pulses“Stuff made me depressed and I definitely saw shit out of the corners of my eyes like I had stayed up on acid for too many days. Took me another 3 months to taper off.” In context ↗ Mood or psychiatric effects
- Corticosteroid pulses“Lol did the moodiness give it away? Yep, 40mg prednisone, equal to 6.667mg dexamethasone” In context ↗ Mood or psychiatric effects
- Mirtazapine (Remeron)“I’ve had SSRI withdrawal. It’s more like having norovirus or something.” In context ↗ Withdrawal problems
- Mirtazapine (Remeron)“Last time I tried was Remeron and depending on who you ask I suffered anaphylaxis, a cardiovascular event or a stroke…” In context ↗ Allergic reaction / anaphylaxis
- Mirtazapine (Remeron)“I’m autistic and was misdiagnosed and medicated for bipolar as a teen so I’ve got some brain damage from that and can’t take psych meds anymore without petty horrific side effects.” In context ↗ Side effects
- Clonazepam (Klonopin)“Clonazepam for myoclonus is all that’s worked for me but that stuff is the Devil. I’d rather just shake uncontrollably for a couple hours.” In context ↗ Side effects
- CBD (cannabidiol)“CBD actually triggers my panic disorder. It’s like a super racy sativa.” In context ↗ Mood or psychiatric effects
- COVID vaccination as treatment“Dose one I was sick for two weeks with what in retrospect are myocarditis symptoms, dose 2 wasn’t as bad but had me out for a week” In context ↗ Heart rhythm problems
- COVID vaccination as treatment“I was full-blown bedridden for like 2 weeks, with bad headache and nausea, muscle pains, breathing problems and chest pain, fever, all the fun stuff.” In context ↗ Side effects
Symptoms mentioned
Anxiety & low moodBrain fogBreathlessnessFlu-like symptomsGut problemsHeadaches & migraineHeart symptoms & palpitationsLoss of smell or tasteMuscle weaknessNeuropathy & tinglingPOTS & dysautonomiaPain & fibromyalgiaPost-exertional malaiseSleep problemsTemperature regulationTinnitus
Their words about their symptoms
- Post-exertional malaise
I’ve had like a pattern of 2-3 good days followed by 4-14 bad ones for like 3 1/2 years now.
In context ↗ - Brain fog
brain fog isn’t helped but isn’t worse at all
In context ↗ - POTS & dysautonomia
POTS symptoms, dysautonomia
In context ↗ - Heart symptoms & palpitations
my heart rate will jump to 130 but POUNDING
In context ↗ - Sleep problems
I’ve used medical cannabis for pain, spasms, lack of appetite, insomnia and PTSD
In context ↗ - Pain & fibromyalgia
I have worse chronic pain and fatigue than before
In context ↗ - Headaches & migraine
more headaches and neuralgia
In context ↗ - Gut problems
I take 40mg famotidine twice a day and gaviscon before bed
In context ↗ - Neuropathy & tingling
I have had a numb left side of my face since Feb 2020
In context ↗ - Anxiety & low mood
The worst part of Long Covid for me has been the depression, lack of hope and subsequent suicidal ideation.
In context ↗ - Breathlessness
I need breathing meds to keep my airways open from now on
In context ↗ - Temperature regulation
my fever went away after about 32 months
In context ↗ - Loss of smell or taste
I still can’t smell much
In context ↗ - Tinnitus
Headaches. Tinnitus. Dizziness. Since January 2020.
In context ↗ - Muscle weakness
my body doesn’t want to move
In context ↗ - Flu-like symptoms
sore throat, fatigue, cough, nausea, GI upset
In context ↗
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