Long COVID
Severe → much betterIll 2 years before improving or writing
Bedbound or couchbound with long COVID, now much better on Abilify and rapamycin
- Condition
- Long COVID
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- 2 years
- Last post
- Jul 2025
In their words
- Condition: Long COVID
Had LC since Oct 2022 with PEM, MCAS, POTS, MECFS type.
In context ↗ - At worst: Severe
before I was bedbound/couchbound with no real improvement for 2 years
In context ↗ - Now: Much better
I started taking Rapamycin last November and I think it has done the most to bring me out of moderate/severe and into mild me.
In context ↗ - Began after: COVID
For me I got Covid in Sept 22 and CFS rapidly onset ever since.
In context ↗
Read from 15 of their posts and comments; links to the 14 this page draws on
Summary
Petrel 19271 got COVID-19 in September 2022 and ME/CFS followed, leaving them bedbound or couchbound with no real improvement for two years. Low-dose Abilify took them from severe to moderate, and weekly rapamycin from November 2024 brought them to mild, though PEM and food intolerances remained. Rapamycin brought soreness and fatigue for a couple of days after each dose, and early overexertion caused a two-week crash.
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What they tried
What they credit
Rapamycin· Helped a lot · mainLow-dose Abilify (LDA)· Helped · maindiet changes (vegan gluten free low histamine)· Helpedberberine based herbal supplements· HelpedHerbal immune stimulants (echinacea, astragalus, goldenseal)· HelpedHerbal immune stimulants (echinacea, astragalus, goldenseal)· HelpedHerbal immune stimulants (echinacea, astragalus, goldenseal)· HelpedNattokinase· Helpedfasting· Helped
Also tried
TENS machine with ear clips / DIY transcutaneous vagus nerve stimulator· Helped · wore offCannabis (THC,CBD 1:1)· Helped · wore offMetformin· HelpedAspirin· Not saidPropranolol· Not saidPravastatin· Not saidNaltrexone· Not saidTurmeric/Curcumin· Not saidNicotine Patch/Oral Pouch· Not saidDiphenhydramine (benadryl)· Not saidPacing· Not said
Their words about each treatment
- TENS machine with ear clips / DIY transcutaneous vagus nerve stimulator · Helped
I got severe enough that it only helps a little and the DPDR is unaffected now. But having less hypersensitivity has been a huge plus.
In context ↗ - Cannabis (THC,CBD 1:1) · Helped
It did become less effective but the nightmares are always gone with THC/CBD.
In context ↗ - Aspirin · Not said
Aspirin - Blood Thinning for Anti-Platlet
In context ↗ - Propranolol · Not said
Propranolol - Beta-Blocker against sympathetic overactivity
In context ↗ - Pravastatin · Not said
Pravastatin - Statin to prevent Atherosclerosis
In context ↗ - Naltrexone · Not said
Naltrexone - Opioid Antagonist/Immune Modulating
In context ↗ - Turmeric/Curcumin · Not said
Turmeric/Curcumin - Anti-Inflammatory/Immune Modulating
In context ↗ - Nicotine Patch/Oral Pouch · Not said
Nicotine Patch/Oral Pouch- Neuroinflammation and fatigue
In context ↗ - Diphenhydramine (benadryl) · Not said
Diphenhydramine (benadryl) - Sleep Aid
In context ↗ - Metformin · Helped
Metformin (not current taking because it destroys my gut but its helped some)
In context ↗ - Low-dose Abilify (LDA) · Helped
it took me to moderate with significant cognitive improvements
In context ↗ - diet changes (vegan gluten free low histamine) · Helped
my gut issues majorly clearing up after diet changes (vegan gluten free low histamine)
In context ↗ - berberine based herbal supplements · Helped
I believe part of my instant success with that may be due to my gut issues majorly clearing up after diet changes (vegan gluten free low histamine) and berberine based herbal supplements.
In context ↗ - Rapamycin · Helped a lot
I started taking Rapamycin last November and I think it has done the most to bring me out of moderate/severe and into mild me.
In context ↗ - Pacing · Not said
I'm having to pace heavily after doing too much. PEM feels distant until it isnt I guess.
In context ↗ - Herbal immune stimulants (echinacea, astragalus, goldenseal) · Helped
One other thing that I think has been helpful has been taking herbal immune stimulants in the form of echinacea, astragalus, and goldenseal.
In context ↗ - Nattokinase · Helped
taking nattokinase seem like they are lessening damage
In context ↗ - fasting · Helped
In my experience fasting, taking rapamycin, and taking nattokinase seem like they are lessening damage
In context ↗
Approaches: Anticoagulants · Diet · Other drugs and medicines · 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 2 years 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 |
|---|---|---|---|
| September 2022 | COVID-19 infection; CFS rapidly onsetFor me I got Covid in Sept 22 and CFS rapidly onset ever since.In context ↗ | Not stated | |
| 2024 | bedbound/couchbound with no real improvement for two yearsbefore I was bedbound/couchbound with no real improvement for 2 yearsIn context ↗ | Severe | |
| October 2024 | low-dose Abilify lifted them from severe to moderate, better cognitionI started LDA when severe last year and it took me to moderate with significant cognitive improvements.In context ↗ | Moderate | Low-dose Abilify / aripiprazole |
| November 2024 | rapamycin started; able to stand longer, light chores and very light exerciseDramatic improvement from barely hobbling to the couch from the bed.In context ↗ | Moderate | Rapamycin / sirolimus |
| November 2024 | overexerted after first rapamycin dose, couple week crashThe first dose I took made me feel like I could exercise just a few days from being bedbound/couchboubd and I over did it with a couple week crash.In context ↗ | Not stated | |
| June 2025 | out of moderate/severe into mild, still PEM and full food intolerancesI started taking Rapamycin last November and I think it has done the most to bring me out of moderate/severe and into mild me.In context ↗ | Mild | Rapamycin / sirolimus |
Adverse events
- Vagus nerve stimulation“during TENS it feels worse almost triggering?” In context ↗ Made symptoms worse
- Vagus nerve stimulation“It's not pleasant to use but it's not the worst.” In context ↗ Side effects
- Metformin“Metformin (not current taking because it destroys my gut but its helped some)” In context ↗ Gut side effects
- Rapamycin / sirolimus“Only thing off that might be from Rapamycin is dull joint pain in my knees and shoulders (manageable compared to previous LC intermittent joint pains) and maybe some sleep troubles.” In context ↗ Side effects
- Rapamycin / sirolimus“With that I had a rough couple of days but after I was eager to just do things around the house with all the new energy.” In context ↗ Side effects
- Low-dose Abilify / aripiprazole“I started on 2mg tablets and started getting worse until I split the pills for 1mg doses” In context ↗ Made symptoms worse
- Rapamycin / sirolimus“The first couple days after dose I feel more fatigued and sore. The soreness is especially present in my heels and hips and that didnt start until after starting rapamycin. Pain levels enough to wake me up in the middle of the night.” In context ↗ Side effects
Symptoms mentioned
Brain fogGut problemsHeart symptoms & palpitationsLight & noise sensitivityMast cell (MCAS) & allergiesMuscle weaknessPOTS & dysautonomiaPain & fibromyalgiaPost-exertional malaiseSleep problemsTemperature regulation
Their words about their symptoms
- Post-exertional malaise
So it's helped substantially with fatigue but I still have PEM.
In context ↗ - Brain fog
it took me to moderate with significant cognitive improvements
In context ↗ - POTS & dysautonomia
Had LC since Oct 2022 with PEM, MCAS, POTS, MECFS type.
In context ↗ - Mast cell (MCAS) & allergies
Also my food intolerances are all still present in full force.
In context ↗ - Sleep problems
the nightmares are always gone with THC/CBD
In context ↗ - Pain & fibromyalgia
The soreness is especially present in my heels and hips
In context ↗ - Heart symptoms & palpitations
the persistent chest pain from LC
In context ↗ - Light & noise sensitivity
It also makes me less touch sensitive
In context ↗ - Temperature regulation
a couple 30 minute sessions through the day takes away my night sweats
In context ↗ - Gut problems
my gut issues majorly clearing up after diet changes
In context ↗ - Muscle weakness
I am just recently able to stand for a prolonged time
In context ↗
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