Long COVID
Severe → near normalIll 5 years before improving or writingNeeds ongoing treatment
Long COVID brain fog and raised heart rate, now close to normal with time and pacing
- Condition
- Long COVID
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- 5 years
- Last post
- Sep 2026
In their words
- Condition: Long COVID
I got long covid/ CFS since 2021.
In context ↗ - At worst: Severe
I(28M) was fairly severe at the beginning. I was initially housebound but most of the time not necessarily bed bound.
In context ↗ - Now: Near normal
I am not recovered 100%. But, I've recovered enough that I am back to living a normal daily life.
In context ↗ - Began after: a vaccination
That's what triggered my initial long covid journey.
Read from 346 of their posts and comments; links to the 46 this page draws on
- Jun 2023
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Summary
A man got mild brain fog and a raised heart rate from the J&J vaccine in 2021; Covid about seven months later made it much worse. He credits time, rest, pacing and cutting sugar/carbs, and says exercise still brings days of PEM and brain fog. At around 1.75 years he estimated he was about 50% recovered and still significantly limited, though he could walk and his heart was improving.
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What they tried
What they credit
pacing· Helped a lot · mainextended rest / bed rest· Helped a lot · maintime· Helped a lot · mainprednisone / steroids· Helped · wore offketo-like diet, cutting sugar, carbs and gluten· Helpedketo-like diet, cutting sugar, carbs and gluten· Helpedketo-like diet, cutting sugar, carbs and gluten· HelpedPaxlovid· Helpedhigh water intake· Helped
Also tried
bisoprolol (beta blockers)· Helped a lotphenergan· Helpedlions mane and turkey tail mushrooms· Helpedice pack to the back of the neck· HelpedLDN (low dose naltrexone)· Helpedplant sterols and low saturated fat diet· HelpedSSRI· No changedaily laxatives· No changehigh fibre supplements· No change60 hour fast· No change3 day water only fast· No changeworkouts / gym / light exercise attempts· Worsesaunas / steam rooms· Worsechlorphenamine· Worseshrooms (psilocybin mushrooms)· Worsehhc vape (cannabis)· Much worsemultivitamins· Not saidfish oil and omega 3· Not saidbiokult gut bacterias / kefir smoothie· Not saidvitamin C· Not saidNAC· Not saidanti inflammatory painkillers· Not saidCOVID vaccination as treatment· Not said
Their words about each treatment
- prednisone / steroids · Helped
I started prednisone yesterday which tackled inflammation and had immediate positive results.
In context ↗ - workouts / gym / light exercise attempts · Worse
I attempted 2 workouts within the following week which both ended abruptly with heart attack symptoms/ heart palpitations.
In context ↗ - phenergan · Helped
Initially I took phenergan (a antihistamine that is well known for its sleepy affect). Now I seem to be able to sleep without taking anything.
In context ↗ - SSRI · No change
Didn't notice much significant changes but staying on it for now.
In context ↗ - keto-like diet, cutting sugar, carbs and gluten · Helped
reduce gluten/ sugar intake considerably. Increase fats (keto diet).
In context ↗ - multivitamins · Not said
taking multivitamins
In context ↗ - fish oil and omega 3 · Not said
taking fish oil and omega 3
In context ↗ - biokult gut bacterias / kefir smoothie · Not said
taking biokult gut bacterias
In context ↗ - lions mane and turkey tail mushrooms · Helped
It's been 4 weeks now and it seems to help me relax a little but it's hard to say whether it is making a difference or not.
In context ↗ - saunas / steam rooms · Worse
I found steam rooms/ Saunas triggered my brainfog.
In context ↗ - chlorphenamine · Worse
I took one at night time for 2 weeks. It certainly made me wake up less during the night however it made getting up in the morning 10 times harder.
In context ↗ - shrooms (psilocybin mushrooms) · Worse
I tried 5g of shrooms and it made my brainfog and derealisation worse for about a week.
In context ↗ - Paxlovid · Helped
Upon my 3rd reinfection I received paxlovid and I do believe it made a solid difference.
In context ↗ - vitamin C · Not said
Took vitamin C.
In context ↗ - high water intake · Helped
Drank 4L of water a day.
In context ↗ - anti inflammatory painkillers · Not said
Anti inflammatory painkillers
In context ↗ - bisoprolol (beta blockers) · Helped a lot
I just recently started taking a low Dose of beta blockers and they really made a notable difference.
In context ↗ - daily laxatives · No change
Tried daily laxatives for 3 months, no change.
In context ↗ - high fibre supplements · No change
Tried high fibre supplements for 3 months, no change.
In context ↗ - hhc vape (cannabis) · Much worse
I tried a hhc vape last week (2.5 years long hauling) and ended up ringing an ambulance at 2am because I had heart attack symptoms.
In context ↗ - ice pack to the back of the neck · Helped
I've experimented with applying and ice pack to the back of my neck after exerting my upper body, and it deffinitely makes a difference.
In context ↗ - LDN (low dose naltrexone) · Helped
I am on my 3rd day of LDN and it baffled me waking up this morning when I moved my arms and legs and they suddenly didn't feel like dead weight.
In context ↗ - 60 hour fast · No change
I did a 60 hour fast 3 months ago and honestly I didn't notice much from it.
In context ↗ - plant sterols and low saturated fat diet · Helped
I cut out all saturated fats, started consuming plant sterol, and tried to go for a 10 min walk each evening.
In context ↗ - 3 day water only fast · No change
I did a 3 day water only fast but didn't notice much from it.
In context ↗ - pacing · Helped a lot
Time and pacing are by far the most effective things for me.
In context ↗ - extended rest / bed rest · Helped a lot
My main strides of LC recovery have been during times of excessive rest.
In context ↗ - time · Helped a lot
Time has been by far the main factor in my ongoing recovery.
In context ↗ - COVID vaccination as treatment · Not said
I got my first vaccine (J&J) and fainted immediately. I was unable to walk for 30 minutes.
In context ↗
Approaches: POTS medication · Antivirals · Diet · Other drugs and medicines · Pacing · Radical rest
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 |
|---|---|---|---|
| 2021 | J&J vaccine brought on mild long-covid symptomsI got mild long covid from the J&J one-jab back in 2021.In context ↗ | Mild | |
| February 2022 | first Covid infection; housebound, could barely cross a roomFor my first 12 months, walking from the couch to the toilet was a struggle. My heart rate would jump to 160bpm.In context ↗ | Severe | |
| August 2022 | second Covid infection; severe flare-up and new PEMMy second time getting it I deffinitely had a severe flare up of my symptoms (50% worse again)In context ↗ | Severe | |
| November 2022 | walking 20-30 minutes again and palpitations stoppedAfter 9 months I can now walk for 20-30 mins again with only mild dizziness and I no longer get heart palpitations.In context ↗ | Moderate | Time and spontaneous remission |
| June 2024 | notable uplift just after the two-year markI'm now on month 28 and Id say I'm about 65% recovered.In context ↗ | Mild | Time and spontaneous remission |
| July 2024 | low-dose bisoprolol cleared chest pain overnightThey surprisingly eradicated all my chest discomfort and pain overnight.In context ↗ | Mild | Bisoprolol (Concor) |
| December 2024 | LDN; daily work hours up about 25%In the last month my daily work hours are up about 25% without me even noticing.In context ↗ | Mild | Low-dose naltrexone |
| July 2026 | back to a normal daily life, working and walking freely, but still no exerciseI've recovered enough that I am back to living a normal daily life.In context ↗ | Near normal | Time and spontaneous remission |
| September 2026 | most symptoms eased, but exertion still triggers a week of PEMMost of my symptoms have eased a lot.In context ↗ | Near normal |
Adverse events
- Corticosteroid pulses“Last night I had 3 episodes of heart palpitations. First time ever having them. ... apparent it is a sever side effect of these steroids and it suggests seeking immediate medical help” In context ↗ Heart rhythm problems
- Antidepressants (unspecified)“I tried one anti depressant 2 years ago and could not for the life of me stay awake. My 3rd day on it I slept 20 hours in a row.” In context ↗ Side effects
- Chlorphenamine (Piriton, Chlor-Trimeton)“it made getting up in the morning 10 times harder. Due to the added fatigue/ lethargy I found my brainfog to be far worse and harder to shake off during the day.” In context ↗ Side effects
- COVID vaccination as treatment“I got my first vaccine (J&J) and fainted immediately. I was unable to walk for 30 minutes.” In context ↗ Low blood pressure or fainting
- Everyday exercise and activity“I blindly and naively followed this suggestion and twice I almost gave myself a heart attack trying to lift weights. This instantly worsened my symptoms both times.” In context ↗ Made symptoms worse
- Bisoprolol (Concor)“Unfortunately I think they have caused some additional fatigue but I'm going to keep with them and see how things unfold over the next couple months.” In context ↗ Side effects
- “I got up to go to the bathroom in the middle of the night and suddenly my heart exploded in my chest. ... After 30 mins I rang an ambulance and went to the hospital.” In context ↗ ER visit
- Extended water fasting (3+ days)“I did a 60 hour fast 3 months ago and honestly I didn't notice much from it. Slightly more brainfog after 40ish hours was all...” In context ↗ Made symptoms worse
Symptoms mentioned
Anxiety & low moodBrain fogBreathlessnessGut problemsHeadaches & migraineHeart symptoms & palpitationsMuscle weaknessNeuropathy & tinglingPOTS & dysautonomiaPost-exertional malaiseSleep problemsVision problems
Their words about their symptoms
- Post-exertional malaise
I get nasty 5-6 days of PEM upon pushing my threshold whatsoever.
In context ↗ - Brain fog
Brainfog/ brain fatigue is still present but a lot milder than it once was.
In context ↗ - POTS & dysautonomia
I was officially diagnosed with Post Covid Syndrome and PoTS.
In context ↗ - Sleep problems
I pretty much have no insomnia anymore!
In context ↗ - Heart symptoms & palpitations
Brainfog, heart palpitations, chronic fatigue
In context ↗ - Gut problems
I went from pooping daily to pooping 1-2 times per week.
In context ↗ - Headaches & migraine
I had very intense pressure in the front of my skull for 1.5 yrs.
In context ↗ - Anxiety & low mood
Still had some depression and anxiety that lingered longer.
In context ↗ - Vision problems
In general since covid I have to like consciously make my eyes focus on things.
In context ↗ - Muscle weakness
they suddenly didn't feel like dead weight
In context ↗ - Neuropathy & tingling
the brainfog, confusion, numbness, depersonalisation, and derealisation all set in heavy.
In context ↗ - Breathlessness
If I try to do more I get dizzy, short of breath, elevated heart rate
In context ↗
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