Long COVID
Severe → near normalIll 5 years before improving or writingNeeds ongoing treatment
Bedbound with long COVID, now nearly back to normal after NAD+ patches and metformin
- Condition
- Long COVID
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- 5 years
- Last post
- Apr 2025
In their words
- Condition: Long COVID
I was a OG March 2020 long hauler.
In context ↗ - At worst: Severe
March 2020 - January 2021 • severe, ALL symptoms, bed bound, unable to work.
In context ↗ - Now: Near normal
i’m good, doing my normal stuff. ... atleast i can work and do things pretty normal.
In context ↗ - Began after: COVID
got Covid first time in March 2020 (light symptoms) and went on to have insanely horrible long Covid
In context ↗
Read from 53 of their posts and comments; links to the 24 this page draws on
Summary
Caught COVID in March 2020 and was bedbound until January 2021, slowly returning to normal activity by 2022. A virus after a family funeral in March 2024 put her back to bed with every long-COVID symptom; NAD+ patches and then metformin left her working and doing normal activities, with lingering fatigue and mild headaches. She also developed intracranial hypertension after a December 2022 infection and takes a diuretic.
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What they tried
What they credit
Also tried
Xanax· Helpeddiuretic (diamox)· Worsephysical therapy· Worsetherapy· Worsestrict anti-inflammatory diet· Not saidherbal teas· Not saidzinc· Not saidmagnesium· Not saidVit D· Not saidB complex with C· Not saidmelatonin· Not saidlifting weights in bed· Not saida blood thinner· Not saidZofran· Not saidAllegra· Not saidpepcid· Not said
Their words about each treatment
- time · Helped a lot
I’d say time and rest made me better.
In context ↗ - rest / scheduling around energy · Helped
I’d work Thursday-Saturday meaning I would force myself to sleep the other days to conserve energy
In context ↗ - strict anti-inflammatory diet · Not said
All I did was strict anti-inflammatory diet, water and tea only.
In context ↗ - herbal teas · Not said
I made my own herbal teas (one anti inflammatory tea in morning and a sleepy tea at night)
In context ↗ - zinc · Not said
I looked at my zinc vitamin bottle and it’s 50mg.
In context ↗ - magnesium · Not said
I take high dose antihistamine and magnesium daily as well
In context ↗ - Vit D · Not said
Vit D (5000 ius bc I’m deficient)
In context ↗ - B complex with C · Not said
B complex with C
In context ↗ - melatonin · Not said
took zinc, magnesium, Vitamin B, C & D, melatonin
In context ↗ - lifting weights in bed · Not said
Started lifting weights in bed.
In context ↗ - Xanax · Helped
I would just take a Xanax and I’d feel good enough to go out and do things
In context ↗ - diuretic (diamox) · Worse
diuretic’s made my long haul symptoms WAY worse
In context ↗ - a blood thinner · Not said
I’m now on medication to try to preserve my eyesight (vision loss is a big concern with this condition) and a blood thinner
In context ↗ - pedialyte / drip drop · Helped
drinking pedialyte everyday atleast makes it to where I’m definitely more mobile and feeling better by 2/3pm
In context ↗ - NAD+ patches · Helped a lot
have had quite a bit of a turn around that I personally attribute to NAD+ patches
In context ↗ - Allegra · Not said
I also take Allegra, pepcid and vitamin D daily.
In context ↗ - physical therapy · Worse
5 days I’ve been in a horrendous flare unable to leave my bed
In context ↗ - therapy · Worse
I end up getting in heated debates with them and it’s just adding to the trauma.
In context ↗ - metformin · Helped a lot
metformin made me turn a significant corner
In context ↗
Approaches: POTS medication · Other drugs and medicines · Pacing · 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. The chart starts 3 months after onset: the story doesn’t say how ill they were before that. 2 steps say too little to place on the scale and are only in the table. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were | After |
|---|---|---|---|
| March 2020 | COVID infection, then long COVIDgot Covid first time in March 2020 (light symptoms) and went on to have insanely horrible long CovidIn context ↗ | Not stated | |
| 2020 | bedbound with all long-COVID symptoms, unable to workMarch 2020 - January 2021 • severe, ALL symptoms, bed bound, unable to workIn context ↗ | Severe | |
| 2021 | back to work, no PEM, 2-3 decent days a weekJan 2021-December 2021 • back to work, no PEM, still had minor flare ups here and there.In context ↗ | Moderate | Time and spontaneous remission |
| 2022 | back to everything normal, brain fog about once a monthMarch 2020 to about beginning of 2022 when I really noticed I was able to do everything normal again.In context ↗ | Near normal | Time and spontaneous remission |
| December 2022 | relapsed after another COVID infectionI got 80% better after a little over 2 years. (March 2020 OG) Have since relapsed after getting a Covid again.In context ↗ | Not stated | |
| March 2024 | viral illness after a family funeral; full long-COVID relapse, bedboundI’ve been bed bound ever since with the full intensity of every LC symptom. ... I can barely walkIn context ↗ | Severe | |
| August 2024 | NAD+ patches; energy and pain improved, functioning fairly normally, working part timeI’m 3 months in and my energy has definitely improved. ... over all I’m functioning pretty normal.In context ↗ | Mild | NAD+ boosters (NMN, nicotinamide riboside, NADH, ATP) |
| August 2024 | crashed after physical therapy exercises5 days I’ve been in a horrendous flare unable to leave my bed.In context ↗ | Severe | |
| March 2025 | metformin; functioning well, only mild fatigue and headaches leftmetformin made me turn a significant corner ... otherwise im functioning wellIn context ↗ | Near normal | Metformin |
| April 2025 | working and doing normal things, long COVID still lingersi’m good, doing my normal stuff. ... atleast i can work and do things pretty normalIn context ↗ | Near normal |
Adverse events
- “I’m getting treated with a diuretic to lower my pressure but the side effects are terrible and my long haul symptoms worse (inflammation, weakness).” In context ↗ Made symptoms worse
- “Girl I’m on diamox too! I’m on 1500 mg a day and it’s terrible!!” In context ↗ Side effects
- “And yeah diuretic’s made my long haul symptoms WAY worse but I really don’t have choice because I was losing vision in my right eye so quickly :/” In context ↗ Made symptoms worse
- Alprazolam (Xanax)“I forgot the Xanax on a weekend trip and totally collapsed due to being unable to handle the panic on my own anymore.” In context ↗ Withdrawal problems
- Physical therapy / physiotherapy“That was 5 days ago. 5 days I’ve been in a horrendous flare unable to leave my bed.” In context ↗ Made symptoms worse
- Zinc, Magnesium“10 mins after taking I get very nauseous and start throwing up.” In context ↗ Gut side effects
- NAD+ boosters (NMN, nicotinamide riboside, NADH, ATP)“I usually feel a lil tired the first 2 days after patch but rest of the week feel pretty good” In context ↗ Side effects
- NAD+ boosters (NMN, nicotinamide riboside, NADH, ATP)“I got a rash from it my third week because I put too much saline in it and it soaked the patch.” In context ↗ Allergic reaction / anaphylaxis
- “The only risk (and it has happened to me) is a spinal leak, talk about work headache of your damn life bc your brain is raw dogging your skull.” In context ↗ Other
Symptoms mentioned
Anxiety & low moodBrain fogBreathlessnessGut problemsHair lossHeadaches & migraineHeart symptoms & palpitationsMast cell (MCAS) & allergiesMuscle weaknessNeuropathy & tinglingPOTS & dysautonomiaPain & fibromyalgiaPost-exertional malaiseSleep problemsTemperature regulationVision problems
Their words about their symptoms
- Post-exertional malaise
Almost all my LC symptoms have gone away but still have PEM, headache and some fatigue.
In context ↗ - Brain fog
I definitely dealt with bad brain fog days and fatigue if I overdid it.
In context ↗ - POTS & dysautonomia
POTS, Headache, MCAS, fatigue, PEM, you name it.
In context ↗ - Headaches & migraine
I still struggle with headaches and and vision loss
In context ↗ - Gut problems
Ended up vomiting for 14 days.
In context ↗ - Heart symptoms & palpitations
checked HR with pulse ox and it was 165
In context ↗ - Muscle weakness
the next day i was so weak i could barely move
In context ↗ - Neuropathy & tingling
Woke up January 2nd and my left arm was completely numb
In context ↗ - Anxiety & low mood
Still have headache and some anxiety but it’s doable.
In context ↗ - Vision problems
my head started hurting and I was having blurry vision
In context ↗ - Hair loss
Yeah I lost half my hair with the March 2020 strain.
In context ↗ - Temperature regulation
get extreme hot flashes to the point I can comfortably sit in an ice bath
In context ↗ - Pain & fibromyalgia
my joint and muscle pain is relieved quite a bit
In context ↗ - Breathlessness
The racing heart, joint pain, shortness of breath started going away
In context ↗
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