Long COVID
Severe → much betterIll 18 months before improving or writingNeeds ongoing treatment
Bedbound spells with long COVID, now much better with pacing and gut treatments
- Condition
- Long COVID
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- 18 months
- Last post
- Jul 2026
In their words
- Condition: Long COVID
Covid in Oct ‘24, diagnosed LC in Dec ‘24.
In context ↗ - At worst: Severe
I was bedbound and walking from my bed to the bathroom caused HR spikes and wheezing
In context ↗ - Now: Much better
I’m about 60% recovered on this wild LC journey I’m on.
In context ↗ - Began after: COVID
Covid in Oct ‘24, diagnosed LC in Dec ‘24.
In context ↗
Read from 47 of their posts and comments; links to the 25 this page draws on
Summary
A woman in Spain got long COVID after a COVID infection in October 2024, with bedbound spells, extreme PEM, four safe foods and brain fog. Graded low-intensity exercise and physiotherapy, mast cell and gut treatments and pacing brought her to about 60% recovered, though rifaximin for suspected SIBO and a prokinetic withdrawal each put her in bed for two months. By mid-2026 she could lift an hour and walk 7-8 km, with flares continuing.
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What they tried
What they credit
Exercise - low intensity zone 2 only cardio and weight lifting· Helped a lot · maineliminating all trigger foods from my diet· HelpedProbiotics· Helpedquercetin· Helpedluetolin· HelpedPEA (palimitoyethanolamide)· HelpedH1 blockers (fexofenadine)· Helpedbreathing exercises, vagus nerve exercises, NSDR meditations, guided yoga nidra· Helped · mainpacing· Helpedcompression socks, salt, IV fluids, electrolytes· Helpedcompression socks, salt, IV fluids, electrolytes· Helpedcompression socks, salt, IV fluids, electrolytes· Helpedgarmin watch and chest strap· Helped
Also tried
physiotherapy (manual treatment)· HelpedH2 blockers (famotadine)· Helped · wore offlymphatic drainage massages· Helpedpsychotherapy· HelpedL-Glutamine· No changedigestive enzymes· No changeCoQ10/PQQ/L-Carnetin· Worserifaximin· Much worsedaily Vitamin D3 with K2· Not saidVitamin C with Zinc· Not saidVitamin B complex (B1, B6, B12)· Not saidVitamin B complex (B1, B6, B12)· Not saidVitamin B complex (B1, B6, B12)· Not saidVitamin B complex (B1, B6, B12)· Not saidFolate (methylated)· Not saidcromolyn sodium· Not saidketotifen· Not said3rd generation curcumin· Not saida prokinetic that is also an antipsychotic· Not saidL-Carnetin· Not saidNADH· Not saidbutyrate· Not saidmotegrity· Not saidAntibiotics (unspecified)· Not said
Their words about each treatment
- Exercise - low intensity zone 2 only cardio and weight lifting · Helped a lot
I went from extreme PEM/exercise intolerance, 4 safe foods, and episodes of being bed bound for 2 weeks at a time or more to daily workouts
In context ↗ - rifaximin · Much worse
I was given rifaximin without a SIBO test and it put me in bed for 2 months straight.
In context ↗ - physiotherapy (manual treatment) · Helped
He reduced the amount of headache and dizziness I get by a half and it helped a lot with the PEM I think.
In context ↗ - eliminating all trigger foods from my diet · Helped
I have made progress mostly with targeted supplements and meds, exercise (weight lifting and low intensity cardio), eliminating all trigger foods, and calming the eff down
In context ↗ - Probiotics · Helped
But now I'm up to 5 strains daily and it's going really well.
In context ↗ - daily Vitamin D3 with K2 · Not said
daily Vitamin D3 with K2,
In context ↗ - Vitamin C with Zinc · Not said
Vitamin C with Zinc,
In context ↗ - Vitamin B complex (B1, B6, B12) · Not said
Vitamin B complex (B1, B6, B12) (methylated)
In context ↗ - Folate (methylated) · Not said
Folate (methylated)
In context ↗ - L-Glutamine · No change
Things that work for other people but did not work for me: L-Glutamine
In context ↗ - quercetin · Helped
when I started taking PEA and Quercetin I got another bump
In context ↗ - PEA (palimitoyethanolamide) · Helped
it feels like it does absolutely nothing for the first 3-5 weeks and then suddenly it kicks in and it works really well
In context ↗ - H1 blockers (fexofenadine) · Helped
the antihistamines, both H1 and H2 blockers are very helpful!
In context ↗ - H2 blockers (famotadine) · Helped
the antihistamines, both H1 and H2 blockers are very helpful! ... Things that work for other people but did not work for me: L-Glutamine, Famatodine (pepcid), digestive enzymes
- cromolyn sodium · Not said
Going to start cromolyn sodium soon, will report back on that
In context ↗ - ketotifen · Not said
Right now for the mast cells I'm on cromolyn sodium and a low dose of ketotifen
In context ↗ - breathing exercises, vagus nerve exercises, NSDR meditations, guided yoga nidra · Helped
just doing the vagus nerve work and breathing exercises has helped me immensely
In context ↗ - pacing · Helped
pacing - making sure not to load too much on my schedule for one day, forcing myself to stop even if I feel ok
In context ↗ - lymphatic drainage massages · Helped
they aren't miracles but they make me feel measurably better for a short time
In context ↗ - psychotherapy · Helped
+1 to psychotherapy, it has been essential in handling all of this.
In context ↗ - 3rd generation curcumin · Not said
oh the tea is not helpful at all, lol. It's just flavouring. I would like to dose with an actual supplement.
In context ↗ - a prokinetic that is also an antipsychotic · Not said
I was taken off a prokinetic that is also an antipsychotic that I had been on for almost a year, and the withdrawal was brutal
In context ↗ - digestive enzymes · No change
Things that work for other people but did not work for me: L-Glutamine, Famatodine (pepcid), digestive enzymes
In context ↗ - CoQ10/PQQ/L-Carnetin · Worse
the mix defo gave me wicked insomnia and i was constantly wired
In context ↗ - L-Carnetin · Not said
the COQ10 i tried also was mixed with PQQ and L Carnetine, so I can't say which of those was the culprit
In context ↗ - compression socks, salt, IV fluids, electrolytes · Helped
Here’s how I beat the flare and kept my sanity intact
In context ↗ - garmin watch and chest strap · Helped
I use it while exercising to make sure I never leave zone 2. It really helps.
In context ↗ - butyrate · Not said
for the dysbiosis i just eat what I can, take a lot of butyrate
In context ↗ - motegrity · Not said
take motegrity to keep things moving
In context ↗ - Antibiotics (unspecified) · Not said
Then I had a crash because I was given antibiotics that absolutely ruined my gut
In context ↗
Approaches: H1 antihistamines · POTS medication · Diet · Exercise and activity · Mind-body practices · 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. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were | After |
|---|---|---|---|
| Oct 2024 | COVID infection; long COVID with extreme PEM, 4 safe foods, bedbound spellsCovid in Oct ‘24, diagnosed LC in Dec ‘24.In context ↗ | Severe | |
| March 2025 | crashed after rifaximin for suspected SIBO; bedbound for 2 monthsin March I was given rifaximin for suspected (but untested) SIBO and it went unbelievably poorly.In context ↗ | Severe | |
| May 2025 | healed from the antibiotic setback and was back in the gymI did heal from that. I was back in the gym somehow in May and June.In context ↗ | Mild | Everyday exercise and activity |
| July 2025 | prokinetic/antipsychotic withdrawal: full POTS, hospitalised for tachycardia, in bed all July and AugustFull on POTS. hospitalised for tachycardia. my resting HR which was normally 60 was 110.In context ↗ | Severe | |
| early October 2025 | walked a 4-hour mountain hike with no crash afterwardsI didn't feel *well* doing it, but I did it, and I didn't suffer afterwards like I used to.In context ↗ | Mild | Everyday exercise and activity |
| 3 Nov 2025 | about 60% recovered; walking 10k, lifting an hour, 25 safe foods, social eventsI’m about 60% recovered on this wild LC journey I’m on.In context ↗ | Mild | Everyday exercise and activity |
| 23 Jan 2026 | dysautonomia crash from overtrainingI had the initial crash from around Jan 23 to around Feb 4.In context ↗ | Moderate | |
| 20 Feb 2026 | crashed again returning to the gym too quicklyI slowly went back to exercising/the gym too quickly, crashed out again on Feb 20.In context ↗ | Moderate | |
| 20 March 2026 | back to about 50% healed, climbing back toward 60%It took me til around March 20 to feel like I was back around 50% healed again and I’m clawing the rest of the way back to my 60%.In context ↗ | Mild | |
| 11 Apr 2026 | back to gym: an hour of lifting, 30 minutes on the bike, 7-8 km walksI'm back to the gym, I can lift about an hour straight and do a 30 minute session on a recumbent bike in zone 3-4.In context ↗ | Near normal | Everyday exercise and activity |
| 12 July 2026 | still has setbacks and flare periods, worse in spring pollen season; trying new drugsI'm about 1y7mo in now, and i have setbacks and flare periods (especially in spring pollen season) and then better times.In context ↗ | Mild |
Adverse events
- Rifaximin / Xifaxan“I was given rifaximin for suspected (but untested) SIBO and it went unbelievably poorly. I was so weak my legs couldn't hold me up” In context ↗ Made symptoms worse
- Rifaximin / Xifaxan“I had liquid green poo, hypothermia and was often only able to eat once every 48 hours” In context ↗ Gut side effects
- Rifaximin / Xifaxan“I suffered two huge setbacks due to failed treatments and when I say setbacks I mean wound up in ER several times and bedbound for 2 months at a time” In context ↗ ER visit
- “I was taken off a prokinetic that is also an antipsychotic that I had been on for almost a year, and the withdrawal was brutal” In context ↗ Withdrawal problems
- “Full on POTS. hospitalised for tachycardia. my resting HR which was normally 60 was 110.” In context ↗ Hospitalisation
- Antibiotics (unspecified)“Then I had a crash because I was given antibiotics that absolutely ruined my gut” In context ↗ Gut side effects
- Rifaximin / Xifaxan“the rifax fucked me up bad and made the MCAS full blown” In context ↗ Autoimmune or inflammatory flare
- “the 8 minutes my physio clocked it at also sent me into a crash” In context ↗ Made symptoms worse
- CoQ10 / ubiquinol“the mix defo gave me wicked insomnia and i was constantly wired” In context ↗ Insomnia from treatment
- Glutamine“I still don't process L-glutamine well at all” In context ↗ Side effects
- Salt, electrolytes and fluids“7 was deeply unpleasant and i hated it so i dropped it down to 4-5g. it's still un pleasant and it can make my stomach a little iffy” In context ↗ Side effects
Symptoms mentioned
Anxiety & low moodBrain fogBreathlessnessFlu-like symptomsGut problemsHeadaches & migraineHeart symptoms & palpitationsMast cell (MCAS) & allergiesMuscle weaknessNeuropathy & tinglingPOTS & dysautonomiaPain & fibromyalgiaPost-exertional malaiseSleep problemsTemperature regulation
Their words about their symptoms
- Post-exertional malaise
I went from extreme PEM/exercise intolerance, 4 safe foods
In context ↗ - Brain fog
Still have issues with on and off dizziness, headaches, nausea, flushing, itching, weird poops, general fatigue, and brain fog.
In context ↗ - POTS & dysautonomia
My dysautonomia is characterised by sudden steep drops in BP, bradycardia, air hunger, bowels no longer moving/constipation
In context ↗ - Mast cell (MCAS) & allergies
food intolerances, skin flushing and itching
In context ↗ - Pain & fibromyalgia
on and off neuromuscular pain
In context ↗ - Headaches & migraine
Still have issues with on and off dizziness, headaches
In context ↗ - Gut problems
nausea, horrible abdominal distension/bloating, diarrhea and also constipation
In context ↗ - Breathlessness
sudden steep drops in BP, bradycardia, air hunger
In context ↗ - Heart symptoms & palpitations
my resting HR which was normally 60 was 110
In context ↗ - Muscle weakness
the feeling like my limbs were too heavy to move
In context ↗ - Neuropathy & tingling
I did have a bit of nerve pain in the beginning and it went away
In context ↗ - Anxiety & low mood
terrifying anxiety spikes
In context ↗ - Flu-like symptoms
it felt like crushing fatigue, numbness in the face, flu symptoms
In context ↗
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