Long COVID
Severe → no benefitIll for 6 yearsNeeds ongoing treatment
Mostly bedbound with long COVID, no lasting benefit from pacing and rest
- Condition
- Long COVID
- At worst
- Severe (mostly bedbound)
- Ill for
- 6 years
- Last post
- Oct 2026
In their words
- Condition: Long COVID
Did not change my Long Covid at all.
In context ↗ - At worst: Severe
After my second infection I am at 15% since 1.5 years. So I am mostly bedbound.
In context ↗ - Now: No benefit
After 6 years and testing hundreds of things that all failed, I know only one way to keep from getting worse: pacing, and not a single way to get better.
In context ↗ - Began after: COVID
After my first infection I got slowly better but since my second infection I am stagnant since 14 months.
Read from 120 of their posts and comments; links to the 52 this page draws on
- May 2024
- Dec 2023
- Oct 2026
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Summary
Sandpiper 97808 described about six years of long COVID. After a first infection they improved slowly to 60–80%, but a second infection dropped them to 10–20% and left them mostly bedbound, at about 1,500 steps a day. They tried apheresis, immunoadsorption, maraviroc, hyperbaric oxygen, ozone and LDN without lasting benefit, and said they wasted a lot of money. They later paced and rested, with no sustained improvement.
Ask Miruvor AI
What they tried
Also tried
HELP apheresis· Helped · wore offAlgovir and Virx nasal sprays with mouthwash· HelpedNaltrexone (LDN)· HelpedPsyllium husks· HelpedColchicine· HelpedOzone therapy· Helped · wore offMestinon· HelpedNitroxolon· HelpedHeating pads· HelpedSitting down while showering· HelpedLow-histamine and low-acid diet· HelpedQuitting sugar· HelpedAudiospray ear spray· HelpedCompression garments· HelpedCold water on legs· HelpedPacing· HelpedRest· HelpedApple Watch pacing alarm· HelpedPassive stretching· HelpedSleeping with upper body raised· HelpedImmunoadsorption· No changeAmoxiclav· No changeHyperbaric oxygen therapy· No changeMaraviroc· No changeBlack seed oil· No changeResveratrol· No changeEAT (epipharyngeal abrasive therapy)· No changeIvermectin· No changeTriple anticoagulant therapy· No changeOxaloacetate· No changeLidocaine· No change48-hour fasts· No changeNattokinase· WorseLumbrokinase· WorseAtorvastatin· WorseCOVID vaccination as treatment· WorseSteroids· Much worseMinoxidil· Not said
Their words about each treatment
- HELP apheresis · Helped
I have done 5 treatments in Germany. I had a small 20% improvement which only lasted for 3 months.
In context ↗ - Immunoadsorption · No change
I also did both. Immunoadsorption had no effect in my case
In context ↗ - Algovir and Virx nasal sprays with mouthwash · Helped
I use Algovir and Virx as well as a mouth wash.
In context ↗ - Naltrexone (LDN) · Helped
I eventually got better on a 3 months course of Naltrexone.
In context ↗ - Nattokinase · Worse
I had terrible reaction with symptoms flare ups that got increasingly worse the longer I continued. Had to quit after 5 days.
In context ↗ - Lumbrokinase · Worse
For me it got worse for 5 days straight until I had to quit.
In context ↗ - Psyllium husks · Helped
Have you tried adding psyllium husks to have a smoother bowel movements? It has worked for me
In context ↗ - Amoxiclav · No change
I took Amoxiclav for UTI. Had some side effects during taking it but they subsided after I was done. No effect on my CFS.
In context ↗ - Colchicine · Helped
Mine got better on 30 days of colchicine
In context ↗ - Hyperbaric oxygen therapy · No change
27 rounds in a hard chamber. No improvement at all.
In context ↗ - Ozone therapy · Helped
Ozone had a nice boost for halve a day (probably the extra oxygen in the blood) but nothing lasting.
In context ↗ - Maraviroc · No change
On 300mg 2x daily I got flank pain so I reduced to 150mg 2x daily and ha no side effects.
In context ↗ - Black seed oil · No change
Did not make any difference for me
In context ↗ - Resveratrol · No change
I tried it for 3 months with no effect.
In context ↗ - EAT (epipharyngeal abrasive therapy) · No change
I did this myself for 30 days with no effect.
In context ↗ - Mestinon · Helped
In my case it resolved bladder problems. But my feet and hand got very cold while on it.
In context ↗ - Minoxidil · Not said
I am using it without side effects.
In context ↗ - Ivermectin · No change
Did not do anything for me.
In context ↗ - Triple anticoagulant therapy · No change
I did this for 3 months with no effect
In context ↗ - Nitroxolon · Helped
I eventually got rid of them with a 3 months course of low-dose Nitroxolon and avoiding certain foods that keep triggering my bladder
In context ↗ - Atorvastatin · Worse
It made me worse from day one. I tried to stuck trough it bad it just got worse and I had to quit
In context ↗ - Steroids · Much worse
Be careful with steroids I got much worse with them
In context ↗ - Oxaloacetate · No change
Nothing besides giving acid reflux
In context ↗ - Lidocaine · No change
I tried it once it didn’t habe any effect at all
In context ↗ - Heating pads · Helped
It got better over time and heating pads gave some relief.
In context ↗ - Sitting down while showering · Helped
Sitting down while showering fixed this for me
In context ↗ - Low-histamine and low-acid diet · Helped
Find out your dietary triggers. Mine are high histamine foods and acidic foods especially bad are citrus, coffee, tomatoes and non frozen fish.
In context ↗ - Quitting sugar · Helped
Eating no sugar helps me with some symptoms, but I did not have any effects from fasting.
In context ↗ - Audiospray ear spray · Helped
You spray it into your ear and for me it helps a bit.
In context ↗ - Compression garments · Helped
No fix but helpful for me are compressing garments and cold water on legs at the end of showering.
In context ↗ - 48-hour fasts · No change
I did not have any effects from fasting. I tried multiple 48h fasts.
In context ↗ - Pacing · Helped
After 6 years and testing hundreds of things that all failed, I know only one way to keep from getting worse: pacing, and not a single way to get better.
In context ↗ - Rest · Helped
The only thing working for me in a crash is doing even less and patiently wait to get better.
In context ↗ - Apple Watch pacing alarm · Helped
I find it quite helpful. I am using an Apple Watch and have a vibration alarm when my pulse goes too high.
In context ↗ - Passive stretching · Helped
More of problem with my lower back but I do some passive stretching exercises to keep that in check.
In context ↗ - Sleeping with upper body raised · Helped
You can try to upholster your uper body when sleeping. That is something that helped me in the same situation.
In context ↗ - COVID vaccination as treatment · Worse
I got slightly worse from vaccination. I did have Long Covid already for 6 months before.
In context ↗
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 |
|---|---|---|
| first infection | first COVID infectionMine was 12k before than 5k after first infection with slight recovery to 7k.In context ↗ | Mild |
| after 1.5 years | slow recovery to about 60-80%Was around 60% recovered after 1.5 years when my second infection set me back to 10%.In context ↗ | Mild |
| second infection | second infection dropped them to 10-20% and mostly bedboundSecond infection put me back from 80% down to 20%.In context ↗ | Severe |
| 2026-10-19 | still mostly bedbound with no sustained improvementAfter 6 years and testing hundreds of things that all failed, I know only one way to keep from getting worse: pacing, and not a single way to get better.In context ↗ | Severe |
Adverse events
- Maraviroc (Selzentry)“On 300mg 2x daily I got flank pain so I reduced to 150mg 2x daily and ha no side effects.” In context ↗ Made symptoms worse
- Nattokinase, Lumbrokinase“I get symptoms flare ups from Lumbrokinase and Nattokinase. Tried to push trough but it got worse by the day so I had to quit.” In context ↗ Made symptoms worse
- Mestinon / pyridostigmine“In my case it resolved bladder problems. But my feet and hand got very cold while on it.” In context ↗ Side effects
- Nattokinase“Nattokinase also made me worse but it stopped as soons as I quit it.” In context ↗ Made symptoms worse
- Amoxicillin-clavulanate (Augmentin)“Took 14 days of amoxiclav. The side effects were bad but manageable and stopped once i was off” In context ↗ Side effects
- Corticosteroid pulses“Be careful with steroids I got much worse with them” In context ↗ Made symptoms worse
- Low-dose naltrexone“Have you tried LDN? I dream a lot as a side effect from it.” In context ↗ Side effects
- Amoxicillin-clavulanate (Augmentin)“I took Amoxiclav for UTI. Had some side effects during taking it but they subsided after I was done.” In context ↗ Side effects
- COVID vaccination as treatment“I got slightly worse from vaccination. I did have Long Covid already for 6 months before.” In context ↗ Made symptoms worse
- Nattokinase, Lumbrokinase“The more I pushed trough the worse it got for me. I don’t think it’s a herx but just a bad reaction.” In context ↗ Made symptoms worse
- Epipharyngeal abrasive therapy (EAT)“It is unpleasant and for the first week I always had blood on the sticks.” In context ↗ Side effects
- Low-dose naltrexone“LDN causes vivid dreams for me” In context ↗ Made symptoms worse
- Lumbrokinase“For me it got worse for 5 days straight until I had to quit.” In context ↗ Made symptoms worse
- Nattokinase, Lumbrokinase“I also react badly to it. Also to Lumbrikinase. Don’t force it! People like to tell it’s a herx reaction so I continued and it just got worse every day.” In context ↗ Made symptoms worse
- Atorvastatin (Lipitor)“It made me worse from day one. I tried to stuck trough it bad it just got worse and I had to quit” In context ↗ Made symptoms worse
- Oxaloacetate“Nothing besides giving acid reflux” In context ↗ Gut side effects
Symptoms mentioned
Brain fogBreathlessnessHeart symptoms & palpitationsMast cell (MCAS) & allergiesPOTS & dysautonomiaPain & fibromyalgia
Their words about their symptoms
- Brain fog
my brain fog is gone and energy is back. As soon as the oxygen is used up I am back to my previous state.
In context ↗ - POTS & dysautonomia
No fix but helpful for me are compressing garments and cold water on legs at the end of showering.
In context ↗ - Mast cell (MCAS) & allergies
Mine are high histamine foods and acidic foods especially bad are citrus, coffee, tomatoes and non frozen fish.
In context ↗ - Pain & fibromyalgia
I have this on both sides and can only sleep on my back. It has improved with time but still not normal.
In context ↗ - Breathlessness
Laying completely flat triggered shortness of breath.
In context ↗ - Heart symptoms & palpitations
I get PVC when I did too much. Can easily measure them with my Apple watch.
In context ↗