Long COVID
RelapsedIll 6 months before improving or writing
Bedbound with long COVID, improved on low-dose naltrexone, then relapsed
- Condition
- Long COVID
- At worst
- Not stated
- Ill before improving or writing
- 6 months
- Last post
- Jun 2026
In their words
- Condition: Long COVID
Long hauling since an infection last may.
In context ↗ - Now: Relapsed
My recovery has stalled out after some big improvements this spring ... I crashed BAD last october and became bedbound ... I'm only starting to exit that crash now 4 months later
- Began after: COVID
Long hauling since an infection last may.
In context ↗
Read from 103 of their posts and comments; links to the 43 this page draws on
- Jan 2025
- May 2025
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Summary
After a COVID infection in May 2024 they were initially barely able to walk, then bedbound after a crash in October 2024. Low-dose naltrexone, started that November and titrated slowly, almost eliminated their pain and reduced PEM, so that by May 2025 they could drive short errands. After crashes in mid-2025, a severe one in October 2025 left them bedbound, and by April 2026 they still described themselves as severe.
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What they tried
What they credit
Also tried
Tyoenol· Helpedzyrtec· Helpedgabapentin· Helpedwater with salt· Helpedabdominal breathing· Helpedcreatine· Helpedacupuncture· Helpedcutting out trigger foods· Helpednovavax· Helpedbrain retraining approaches· No changepropanylol· Worseibuprofen· Worsevisible armband· Not saiddxm· Not saidUtah Adapt· Not saidcold water· Not saidCoQ10 / ubiquinol· Not said
Their words about each treatment
- LDN · Helped a lot
LDN basically eliminated my pain. I had a severe crash last fall, and once I started LDN it basically reduced my pain by 98%.
In context ↗ - pacing · Helped
pacing, time, LDN
In context ↗ - time · Helped
fatigue- time and rest mostly but also LDN
In context ↗ - rest · Helped
I think time, rest and LDN have helped the most
In context ↗ - Tyoenol · Helped
Tyoenol has relived that for me before.
In context ↗ - isometric exercises and simple stretches · Helped
He got me started on isometric exericises and simple stretches. That alone helped me rebuild muscle.
In context ↗ - zyrtec · Helped
for some reason the zyrtec really helps
In context ↗ - gabapentin · Helped
I also take a small amount of gabapentin nightly for another condition I had pre-LC which helped reduce my pain so I could fall and stay asleep.
In context ↗ - water with salt · Helped
Try pounding an entire liter of water with some salt in it. That usually helped me
In context ↗ - propanylol · Worse
i failed at propanylol, it erased my pots but it gave me breathing difficulties and heart rate drops to like 50 bpm
In context ↗ - visible armband · Not said
i decided to spring for the visible armband in hopes it helps me pace better
In context ↗ - abdominal breathing · Helped
I started doing 20 min total of abdominal breathing, 1x in morning and 1x in the evening
In context ↗ - high protein diet · Helped
one thing that helped me build back muscle has been high protein diet, gentle stretching, and for the past few months prone isometric exercises
In context ↗ - dxm · Not said
I took some today before seeing this post and ended up being happy and giggle for a couple of hours lol.
In context ↗ - creatine · Helped
Even 1mg helped me, I never went higher than that. It definitely gave me energy
In context ↗ - acupuncture · Helped
I did accupuncture in 2024 and it seemed to help.
In context ↗ - Utah Adapt · Not said
Im doing Utah Adapt which is PEM friendly
In context ↗ - ibuprofen · Worse
I tend to have a weird reaction to ibuprofen
In context ↗ - cutting out trigger foods · Helped
I took out one of the worst foods I was eating and already had some improvement.
In context ↗ - novavax · Helped
My autonomic symptoms even improved slightly (very slightly). Didnt do shit for my fatigue though.
In context ↗ - cold water · Not said
Lately Ive started to finish off with cold water to bring my heart rate back down.
In context ↗ - brain retraining approaches · No change
I thought these approaches were worth a try and they didnt help at all
In context ↗ - CoQ10 / ubiquinol · Not said
It made me feel like I drank a pot of coffee and also caused low blood sugar events and I had to stop taking it
In context ↗
Approaches: Diet · Pacing · Physiotherapy and rehab · 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 |
|---|---|---|---|
| May 2024 | COVID infection; long haul begins, initially barely able to walkVery slowly I was able to walk againIn context ↗ | Severe | |
| August 2024 | could walk, shower and work a quarter of the time; POTS tachycardia gone since early Julyi can do most daily activities, work quarter time, but any real exercise is out of the question for me (for now)In context ↗ | Moderate | |
| October 2024 | crashed after pushing activity; bed/couchbound for months and had to quit workOctober/nov i was bed/couchbound. I jad to quit working unfortunately.In context ↗ | Severe | |
| February 2025 | step count up on a low LDN dose, still houseboundI'm on .5 and have gotten a boost in step count from 1800/day to around 2600/day so farIn context ↗ | Moderate | Low-dose naltrexone |
| May 2025 | driving short errands 3-4 days a week, gardening and showering standingNow in May, I've been driving short trips, and even doing drive-thrus and little bullshit errands 3-4 days a week.In context ↗ | Moderate | Low-dose naltrexone |
| August 2025 | crashes in June and July; recovery stalled, still homeboundI had a crash in June and one in July, both were surprising given that it wasnt obvious what did it.In context ↗ | Moderate | |
| October 2025 | bad crash leaving him bedboundI crashed BAD last october and became bedbound and you replied to me with kind and encouraging words.In context ↗ | Severe | |
| February 2026 | starting to exit the four-month crash after raising LDN doseI went up to 5.5mg from 4.5 3 weeks ago and it gave me a pretty solid boostIn context ↗ | Severe | Low-dose naltrexone |
| April 2026 | still severe; hot showers give a few hours of reliefIm severe, and i have a similar experience of feeling better for a few hours afterwards.In context ↗ | Severe |
Adverse events
- Low-dose naltrexone“I just started up about 10 days ago on a really low dose due to side effects” In context ↗ Side effects
- Low-dose naltrexone“I started on LDN but got too many side effects and had to dial it back.” In context ↗ Side effects
- Low-dose naltrexone“Ive gotten nausea, and ironically it has made me sleepy and fstigued in the day.” In context ↗ Gut side effects
- Low-dose naltrexone“Ive gotten nausea, and ironically it has made me sleepy and fstigued in the day.” In context ↗ Side effects
- Low-dose naltrexone“When i first started it, it gave me painful nocturnal erections that kept waking me up, but that has abated thankfully.” In context ↗ Insomnia from treatment
- Low-dose naltrexone“on it about a month, I had to go ultra low due to side effects.” In context ↗ Side effects
- Low-dose naltrexone“still titrating up, but no stomach issues for me (unless you count nausea).” In context ↗ Gut side effects
- Low-dose naltrexone“I started at .0375 and experienced this, amongst a lot of other side effects.” In context ↗ Mood or psychiatric effects
- Low-dose naltrexone“I had to start with a super low dose due to pretty bad side effects, but its worth it imo” In context ↗ Side effects
- Low-dose naltrexone“The side effects were far worse at lower doses somehow.” In context ↗ Side effects
- Low-dose naltrexone“Im so tired of increasing and getting side effects again with each increase.” In context ↗ Side effects
- Low-dose naltrexone“I had awful side effects, but made it up to 4.5mg. Now I have zero side effects.” In context ↗ Side effects
- CoQ10 / ubiquinol“It made me feel like I drank a pot of coffee and also caused low blood sugar events and I had to stop taking it” In context ↗ Side effects
- CoQ10 / ubiquinol“It made me feel like I drank a pot of coffee and also caused low blood sugar events and I had to stop taking it” In context ↗ Other
- Propranolol (Inderal)“i failed at propanylol, it erased my pots but it gave me breathing difficulties and heart rate drops to like 50 bpm.” In context ↗ Side effects
- Propranolol (Inderal)“i failed at propanylol, it erased my pots but it gave me breathing difficulties and heart rate drops to like 50 bpm.” In context ↗ Heart rhythm problems
- Propranolol (Inderal)“im pretty senstitive too now for some reason, i was having bad reactions even to 2.5mg of propanolol.” In context ↗ Side effects
- Ibuprofen (Advil, Nurofen, Motrin)“I tend to have a weird reaction to ibuprofen” In context ↗ Side effects
- COVID vaccination as treatment“A few weeks ago I got novavax and only had mild side effects that were nothing compared to living with severe bedbound LC.” In context ↗ Side effects
Symptoms mentioned
Anxiety & low moodBrain fogGut problemsHeart symptoms & palpitationsMast cell (MCAS) & allergiesPain & fibromyalgiaPost-exertional malaise
Their words about their symptoms
- Post-exertional malaise
Ive been housebound since october due to fatigue/pem and pots like symptoms that dont meet criteria.
In context ↗ - Mast cell (MCAS) & allergies
I was diagnosed with MCAS
In context ↗ - Pain & fibromyalgia
Any pain I have now is manageable and ignoreable
In context ↗ - Heart symptoms & palpitations
my heart palpitations suddenly stopped, just inexplicably
In context ↗ - Gut problems
the digestive issues stopped entirely, like overnight at the begining of january
In context ↗ - Brain fog
brain fog clearing that I didnt realize I had
In context ↗ - Anxiety & low mood
yeah nothing like adding on crushing depression to everything else we're going through lol
In context ↗
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