Long COVID
Severe → near normalIll 1 year before improving or writingNeeds ongoing treatment
Bedridden with long COVID, now nearly back to normal after a maraviroc/prednisone protocol
- Condition
- Long COVID
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- 1 year
- Last post
- Aug 2026
In their words
- Condition: Long COVID
20 month covid long hauler here.
In context ↗ - At worst: Severe
My whole first year I was mostly bedbound.
In context ↗ - Now: Near normal
I would say I'm around 95% better (around 90-100 depending on the day).
In context ↗ - Began after: COVID
I originally caught covid there 20 months ago which started this mess
Read from 177 of their posts and comments; links to the 57 this page draws on
- Dec 2021
- Sep 2022
- May 2025
- Oct 2023
- Jan 2021
- Dec 2020
- Nov 2022
- Feb 2024
- Apr 2021
- Jan 2021
- Feb 2023
- Sep 2021
- May 2021
- Jun 2021
- Feb 2022
- Sep 2022
- Sep 2022
- May 2025
- Oct 2023
- Nov 2023
- Feb 2024
- Mar 2024
- Sep 2024
- Jan 2026
- Apr 2025
- Dec 2020
- Feb 2021
- Feb 2021
- Jan 2021
- Sep 2021
- Jun 2021
- Mar 2021
- Jun 2021
- Apr 2021
- Dec 2022
- Nov 2020
- Jul 2021
- Jul 2021
- Dec 2021
- Jan 2022
- Dec 2022
- May 2023
- Aug 2023
- May 2024
- Aug 2026
- May 2025
- Aug 2026
- Jan 2021
- Apr 2023
- Dec 2021
- Dec 2020
- Oct 2023
- Dec 2020
- Jun 2022
- Apr 2023
- Apr 2021
- Jan 2022
Summary
Alpine 25388 caught covid in April 2020 and had a severe first year with fatigue, brain fog, palpitations, chest pain and formication; their worst relapse in January 2021 left them bedridden for most of that month. Two Pfizer shots in 2021 worsened their symptoms, and the second caused a major relapse that took about three months to recover from. A maraviroc/prednisone/ivermectin protocol started in February 2021 helped a lot, though they later backslid after vaccination. A December 2021 reinfection set their progress back, and by April 2022 they were slowly improving but still had brain fog, palpitations/heart pain and other symptoms.
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What they tried
What they credit
Also tried
Benadryl (diphenhydramine)· Helpedkefir· Helpedturmeric (curcumin)· HelpedCBD tincture (sublingual drops)· HelpedDoterra serenity capsules· HelpedAmbien (zolpidem)· HelpedSuperfood supplement high in B vitamins· Helpedantibiotic drops· Helpedivermectin (IVM)· No changealbuterol sulfate inhaler· No changedexamethasone· Worsestatin· WorseNatto-Serra (nattokinase)· WorseNatto-Serra (nattokinase)· Worsetaurine· WorsePfizer COVID vaccine· Much worsebaby aspirin· Not saidcetirizine· Not saidlipoflavonoid· Not saidbetadine nasal spray· Not said
Their words about each treatment
- Benadryl (diphenhydramine) · Helped
I've been taking 50 mg nightly for about three years to help sleep and keep inflammation down
In context ↗ - flush niacin (nicotinic acid) · Helped
I've been taking 250 mg flush niacin once daily. I think it does help a little but I'm a very far cry from cured.
In context ↗ - vitamin C · Helped
I've been taking vit c, quercetin, vit d, zinc, and flush niacin (250mg/day) with some success.
In context ↗ - quercetin · Helped
time, maraviroc, and quercetin probably healed me some overall
In context ↗ - vitamin D and sunlight · Helped
living somewhere with good weather so I've been able to get more sunlight/fresh air which helped a lot
In context ↗ - ivermectin (IVM) · No change
I've tried IVM a bunch and it hasn't seemed to help me at all.
In context ↗ - dexamethasone · Worse
I also tried a couple days of dexamethasone at the beginning of this relapse. Maybe doing short spurts of each was a really bad idea because this is the worst.
In context ↗ - maraviroc (Selzentry) · Helped a lot
The antiviral Maraviroc has been the main factor in my getting back to being functional.
In context ↗ - prednisone · Helped a lot
I think the prednisone is the part of the "protocol" that helped me more than anything else
In context ↗ - Pfizer COVID vaccine · Much worse
I got Pfizer though and both doses made me much worse.
In context ↗ - statin · Worse
I tried it combined with a statin and IVM recently and those together made my symptoms way worse for a couple days
In context ↗ - albuterol sulfate inhaler · No change
My albuterol sulfate inhaler didn't help at all.
In context ↗ - baby aspirin · Not said
I've been taking a small dose of baby aspirin for a while now to help with micro-clots
In context ↗ - Natto-Serra (nattokinase) · Worse
Both times I tried Natto I felt a bit worse.
In context ↗ - kefir · Helped
I have been, and I've been under the impression it's been helping.
In context ↗ - turmeric (curcumin) · Helped
I think turmeric and ashwagandha (which I initially took to recoup sex drive) helped cut some of that brain fog and calm down my overactive stress/fight-or-flight
In context ↗ - ashwagandha · Helped
Ashwagandha helped me the most with my neuro symptoms
In context ↗ - cetirizine · Not said
I also take 10 mg cetirizine
In context ↗ - CBD tincture (sublingual drops) · Helped
CBD tinctures and Doterra serenity capsules have helped my sleep a lot
In context ↗ - Ambien (zolpidem) · Helped
I would smash an Ambien pill and take a tiny little piece of it since I usually didn't need much more than that
In context ↗ - NAC · Helped
Antivirals, NAC, Ashwagandha, and some Superfood supplement high in B vitamins all helped me a lot in getting some mental clarity and energy back.
In context ↗ - lipoflavonoid · Not said
I take lipoflavonoid and I really don't know if it helps or not but it seems louder when I don't take it
In context ↗ - taurine · Worse
Taurine made my palpitations more intense/worse for some reason.
In context ↗ - antibiotic drops · Helped
Antibiotic drops helped me and also using thera-tears spray on eyelid wipes
In context ↗ - betadine nasal spray · Not said
I'm not sure it actually protects me but it seems to help?
In context ↗ - time · Helped a lot
Thanks to maraviroc and time and I guess some other supplements I'm mostly better.
In context ↗
Approaches: Antivirals · 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. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were | After |
|---|---|---|---|
| April 2020 | caught covidI would say moderately sick for about 2 1/2 weeks.In context ↗ | Moderate | |
| January 2021 | worst relapse, bedbound most of the monthI was totally bedbound for most of JanuaryIn context ↗ | Severe | |
| February 2021 | started Patterson protocol and felt really goodstarted the protocol mid-Feb and felt really good, thought I was maybe being curedIn context ↗ | Mild | Maraviroc (Selzentry) |
| March 2021 | worse after first Pfizer shotGot my first Pfizer shot 3 days ago. To be honest it sort of retriggered my symptoms, I feel worse.In context ↗ | Moderate | |
| April 2021 | relapsed big time after second Pfizer shotI relapsed big time after my second shot too.In context ↗ | Severe | |
| July 2021 | back to pre-vaccine levelit took me like 3 months to get back to where I was before the shotIn context ↗ | Mild | Maraviroc (Selzentry) |
| December 2021 | walking 10k steps, symptoms mostly gonehave been walking 10k steps on some days without any problems or relapses, symptoms mostly goneIn context ↗ | Mild | |
| December 2021 | reinfected over the holidays (suspected omicron)got reinfected over the holidays (omicron I think). Set my progress back quite a bitIn context ↗ | Moderate | |
| December 2022 | reinfected after a friend visitedalthough last month that did result in me getting re-infectedIn context ↗ | Moderate | |
| April 2023 | tinnitus and hearing loss after a stressful eventnewly got some tinnitus that appears to be permanent last monthIn context ↗ | Mild | |
| August 2023 | more functional, able to bike regularlyI'm more functional now, somewhere in the middle. I can bike regularly, the warm weather is helping.In context ↗ | Mild | |
| May 2024 | lost free access to maraviroc and deteriorated on a half doseI'm down to a half-dose and my condition has already deteriorated so muchIn context ↗ | Moderate | |
| May 2025 | around 95% better, best shape of their lifeI would say I'm around 95% better (around 90-100 depending on the day).In context ↗ | Near normal | Maraviroc (Selzentry) |
| August 2026 | credits maraviroc for recovery, bad days infrequentI largely attribute my recovery to MVC. Stopped me from crashing/relapsing and my bad days are not too frequent.In context ↗ | Near normal | Maraviroc (Selzentry) |
Adverse events
- Niacin (vitamin B3)“I started with 100mg twice daily, but my flushes, while mild, seem to last hours. I still feel a little hot/itchy 4 or so hours after ingesting.” In context ↗ Side effects
- Corticosteroid pulses“I also tried a couple days of dexamethasone at the beginning of this relapse. Maybe doing short spurts of each was a really bad idea because this is the worst.” In context ↗ Made symptoms worse
- Ivermectin“I took that regular suggested dose that takes three days (though you don't take it the second day) and it didn't help me at all. Actually I had the worst relapse of my illness right after.” In context ↗ Made symptoms worse
- Ivermectin“I felt a little tenderfooted while on it. I was maybe even a little hoarse.” In context ↗ Side effects
- Corticosteroid pulses“Some people have benefitted from a round or two of steroids, but for me the side effects were too bad.” In context ↗ Side effects
- Corticosteroid pulses“The pred I did 40 mg that time and it was waaay too much for me. I mean the energy was good, but it made it too difficult for me to sleep, so I was exhausted.” In context ↗ Insomnia from treatment
- Corticosteroid pulses“The prednisone nightmares *were* bad at first--I was taking 10 mg/day.” In context ↗ Mood or psychiatric effects
- COVID vaccination as treatment“Got my first Pfizer shot 3 days ago. To be honest it sort of retriggered my symptoms, I feel worse. A lot more fatigued and foggy.” In context ↗ Made symptoms worse
- COVID vaccination as treatment“When I say the vaccine made me relapse, I mean it happened in a big way; they were not mildish flares and I did not improve, period.” In context ↗ Made symptoms worse
- COVID vaccination as treatment“My brain fog actually came back something fierce, and my chest pains and formication have gotten worse.” In context ↗ Made symptoms worse
- Statins (unspecified)“I tried it combined with a statin and IVM recently and those together made my symptoms way worse for a couple days and I couldn't figure out why.” In context ↗ Made symptoms worse
- Statins (unspecified)“The statins presented too many awful side effects for me to continue.” In context ↗ Side effects
- Nattokinase, Serrapeptase“Both times I tried Natto I felt a bit worse.” In context ↗ Made symptoms worse
- Taurine“Taurine made my palpitations more intense/worse for some reason. It was bad enough that I stopped taking it” In context ↗ Heart rhythm problems
Symptoms mentioned
Anxiety & low moodBrain fogBreathlessnessFlu-like symptomsGut problemsHeart symptoms & palpitationsNeuropathy & tinglingPOTS & dysautonomiaPain & fibromyalgiaPost-exertional malaiseSleep problemsTemperature regulationTinnitusVision problems
Their words about their symptoms
- Post-exertional malaise
I was crashing every week or so from the slightest exertion.
In context ↗ - Brain fog
Brain fog just went away gradually
In context ↗ - POTS & dysautonomia
now I'm back in the worst relapse I've ever had, tons of dizziness
In context ↗ - Sleep problems
if I can't get 8 hours my symptoms are at least about 5 times worse
In context ↗ - Pain & fibromyalgia
Lots of body aches, head swimminess, some chest pain.
In context ↗ - Gut problems
highly nauseous and had trouble thinking all day yesterday
In context ↗ - Breathlessness
Chest tightness turned into pain when breathing and shortness of breath.
In context ↗ - Heart symptoms & palpitations
I still experience mild chest pains, heart palps
In context ↗ - Neuropathy & tingling
I have that weird prickling feeling all over my body.
In context ↗ - Anxiety & low mood
I can't tell you how dark some of my thoughts were when I was 8-12 months in
In context ↗ - Flu-like symptoms
Symptoms were mostly mild fever, cough, mild chest tightness
In context ↗ - Tinnitus
loud ringing in my left ear
In context ↗ - Temperature regulation
when it gets bad, maybe some fever/chills
In context ↗ - Vision problems
occasional muscle spasms and blurry vision
In context ↗
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