Long COVID
Moderate → somewhat betterIll 2 years before improving or writingNeeds ongoing treatment
Moderate-to-severe ME with long COVID, somewhat better after iron infusions and daily B12
- Condition
- Long COVID
- At worst
- Moderate (mostly housebound)
- Ill before improving or writing
- 2 years
- Last post
- Sep 2026
In their words
- Condition: Long COVID
I have the classic severe LC which is LC+ ME (mod rn)
In context ↗ - At worst: Moderate
it got me from mod-severe to mod
In context ↗ - Now: Somewhat better
it got me from mod-severe to mod ... I'm currently in PEM bc my sleep has collapsed
- Began after: COVID
I have the classic severe LC which is LC+ ME (mod rn)
In context ↗
Read from 18 of their posts and comments; links to the 14 this page draws on
Summary
An American long COVID patient with ME, MCAS, hyperadrenergic POTS, hEDS, CCI and SIBO called their ME moderate-to-severe. Three iron infusions for low ferritin lifted them from mod-severe to moderate ME, and they now inject B12 daily. Maraviroc with a statin and five days of Paxlovid brought no lasting change; a dopamine agonist for restless legs wrecked their sleep, caused PEM and risks a return to severe ME.
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What they tried
What they credit
Also tried
Paxlovid· Helped a lot · wore offB12 injections· Helped · wore off5HTP· Helpedketo· Helpedgluten free and low sugar diet· Helpedgluten free and low sugar diet· Helpedlow histamine diet· HelpedPanax ginseng· HelpedValarian root· Helpedantihistamines· Helpedweekly saline infusion· HelpedTENS machine· HelpedNorethin (progesterone)· HelpedLow Dose Naltrexone· HelpedL-theanine· HelpedMagnesium Calm citrate / magnesium glutamate· HelpedClonidine· Helpedvagal breathing· HelpedIvabradine· HelpedTirzepitide· HelpedMaraviroc· No changestatin· No changeiron supplements· No changeL-Dopa· No changemethylated B12· WorseB6· WorseModonifil and Armodonifil· Worseacupuncture· Much worseRequip· Much worse
Their words about each treatment
- Paxlovid · Helped a lot
I had responded really well to a 5 day Paxlovid about 5 months into LC but the good wore off after about 1 week
In context ↗ - Maraviroc · No change
I've already done 3 months of either Maraviroc or a placebo with no change (for a trial)
In context ↗ - statin · No change
almost at 3 months of prescribed Maraviroc+statin with again no change
In context ↗ - iron infusions · Helped a lot
I got 3 iron infusions which helped so much- when from mod-severe ME to just mod ME
In context ↗ - iron supplements · No change
I've been trying to bump my iron up via supplements but that didn't work
In context ↗ - B12 injections · Helped
I've just started doing every other day injections ... the injections help more
- methylated B12 · Worse
For me, methylated B12 and B6 cause restlessness and lots of anxiety and nerve pain at night, almost like MCAS symptoms.
In context ↗ - acupuncture · Much worse
has put me in the worst PEM to date
In context ↗ - 5HTP · Helped
5HTP taken 5 hours before sleep has help me with the freaky getting to sleep issues
In context ↗ - keto · Helped
I just did a few weeks of keto (terrible) at my doctor's recommendation to help get my sleep out of a crash. It helped with the no deep or REM
In context ↗ - gluten free and low sugar diet · Helped
all of these have worked at some point ... going gluten free ... Going low sugar
In context ↗ - low histamine diet · Helped
all of these have worked at some point ... low histamine diet
In context ↗ - Panax ginseng · Helped
all of these have worked at some point ... Panax ginseng taken in the morning
In context ↗ - Valarian root · Helped
all of these have worked at some point ... Valarian root
In context ↗ - antihistamines · Helped
all of these have worked at some point ... Antihistamines
In context ↗ - weekly saline infusion · Helped
Weekly saline infusion to help with POTS/internal tremors
In context ↗ - TENS machine · Helped
using a Tens machine to calm nervous system/POTS
In context ↗ - Oxaloacetate · Helped
The only thing that has helped me ME is Oxaloacetate, which is very expensive.
In context ↗ - energy envelope pacing · Helped
Making sure to not get even go close to the edge of my energy envelope
In context ↗ - Norethin (progesterone) · Helped
all of these have worked at some point ... Norethin 5mg (progesterone)
In context ↗ - Low Dose Naltrexone · Helped
all of these have worked at some point ... Low Dose Naltrexone 4.5mg
In context ↗ - L-theanine · Helped
all of these have worked at some point ... L-theanine
In context ↗ - Magnesium Calm citrate / magnesium glutamate · Helped
all of these have worked at some point ... Magnesium Calm citrate ... Magnesium glutamate
In context ↗ - Clonidine · Helped
Clonidine probably helping the most for nightmares
In context ↗ - vagal breathing · Helped
Clonidine, IV Saline, Ivabridine and using a tens unit+vagal breathing has helped me with that
In context ↗ - CPAP · Helped
all of these have worked at some point ... CPAP
In context ↗ - Requip · Much worse
I started Requip ... It wrecked my sleep and gave me the worst restless legs, internal tremors, and muscle twitches.
In context ↗ - L-Dopa · No change
I have tried L-Dopa and no luck
In context ↗ - Modonifil and Armodonifil · Worse
I'm still recovering from Modonifil and Armodonifil. Both kept me awake for 24-48 hours after a single dose and messed up my ability to nap and sleep as long as needed.
In context ↗ - Tirzepitide · Helped
I use Tirzepitide and was originally prescribed a micro dose but the higher dose (5ml), a starting dose for regular usage, helps the appetite way more.
In context ↗
Approaches: 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 first step with a time is 2 years after onset: the story doesn’t say how ill they were before that. The dashed part: the story doesn’t say when. 1 step says too little to place on the scale and is only in the table. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were | After |
|---|---|---|---|
| 2023 | long COVID onsetI'm at 2 years with LCIn context ↗ | Not stated | |
| — | ME at its worst, low ferritin and B12I have low ferritin and B12 ... when from mod-severe ME to just mod MEIn context ↗ | Moderate | |
| fall 2025 | iron infusions lifted ME from mod-severe to modI got 3 iron infusions which helped so much- when from mod-severe ME to just mod MEIn context ↗ | Moderate | Iron infusion / ferritin repletion |
| 2026-07 | crashed from modafinil and armodafinil, not fully recoveredboth put me in a crash a few weeks ago from not sleeping and I haven't fully recoveredIn context ↗ | Moderate | |
| 2026-08-07 | Requip for restless legs wrecked sleep and caused PEMIt wrecked my sleep and gave me the worst restless legs, internal tremors, and muscle twitches.In context ↗ | Moderate | |
| 2026-09-21 | still moderate ME, in PEM, insomnia worse than everI have the classic severe LC which is LC+ ME (mod rn), MCAS, hyperadregenic POTS, hEDS, CCI, SIBO.In context ↗ | Moderate |
Adverse events
- Vitamin B12“For me, methylated B12 and B6 cause restlessness and lots of anxiety and nerve pain at night, almost like MCAS symptoms.” In context ↗ Side effects
- Vitamin B6 (pyridoxine, P5P), Vitamin B12“For me, methylated B12 and B6 cause restlessness and lots of anxiety and nerve pain at night, almost like MCAS symptoms.” In context ↗ Side effects
- Ropinirole“I started Requip, a d\*pamine antagonist supposed to address Restless Legs. It wrecked my sleep” In context ↗ Insomnia from treatment
- Ropinirole“gave me the worst restless legs, internal tremors, and muscle twitches. It's been days and I still can't to sleep and it's causing PEM” In context ↗ Made symptoms worse
- Modafinil / armodafinil“Both kept me awake for 24-48 hours after a single dose and messed up my ability to nap and sleep as long as needed.” In context ↗ Insomnia from treatment
- Modafinil / armodafinil“He also Rx Armodafinil and Modonifil which both put me in a crash a few weeks ago from not sleeping and I haven't fully recovered.” In context ↗ Made symptoms worse
Symptoms mentioned
Gut problemsMast cell (MCAS) & allergiesPOTS & dysautonomiaPost-exertional malaiseSleep problemsTemperature regulation
Their words about their symptoms
- Post-exertional malaise
I'm currently in PEM bc my sleep has collapsed and my insomnia has been worse than ever
In context ↗ - Sleep problems
wrecked my sleep and gave me the worst restless legs, internal tremors, and muscle twitches
In context ↗ - POTS & dysautonomia
I have the classic severe LC which is LC+ ME (mod rn), MCAS, hyperadregenic POTS, hEDS, CCI, SIBO.
In context ↗ - Mast cell (MCAS) & allergies
Treating the MCAS with everything
In context ↗ - Gut problems
now that my gut is shredded
In context ↗ - Temperature regulation
Clonidine (really helps with the nightmares and night sweats!)
In context ↗
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