Long COVID
Severe → much betterIll 5 years before improving or writing
Bedbound with long COVID in 2022, now much better after hydroxychloroquine and prednisone
- Condition
- Long COVID
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- 5 years
- Last post
- Mar 2025
In their words
- Condition: Long COVID
March 2020 checking in. This year I got the GI problems.
In context ↗ - At worst: Severe
Last year was the worst year of my life. I was bed bound for a lot of it.
In context ↗ - Now: Much better
I still have plenty of problems but I can finally make it through most work days ... They aren’t as bad as they were but I still backslid and aren’t where I should be.
- Began after: COVID
Gained it all back after COVID in 2020
Read from 18 of their posts and comments; links to the 16 this page draws on
Summary
Fell ill with COVID-19 in March 2020 and was bed bound for much of 2022, thinking they would have to quit work; a third and fourth vaccine dose made their health worse. Hydroxychloroquine with a short prednisone course, started in late 2022, made them functional again by April 2023. Leaving a stressful job helped, then they backslid; by 2025 memory and word-finding problems remained.
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What they tried
What they credit
Also tried
prednisone· Helped a lot · wore offAdderall· Helpedlow histamine diet· Helpedmattress elevator· Helpedgaviscon advance aniseed flavor· HelpedZyrtec· Helpedelectrolyte drinks· Helpedacid reducing medication· No changevegan diet· No changensaid· WorseTylenol· Worsecream for my toes to help dilate them· Not saidalkaline water· Not saidpropranolol· Not saidCBD· Not said
Their words about each treatment
- Adderall · Helped
I’m glad to have medication because it would be worse without it.
In context ↗ - prednisone · Helped a lot
The first time I took it I finally felt normal for the first time in a year. Then when I had to start lowering the dose all the pain came back and felt 3X worse.
In context ↗ - hydroxychloroquine (HCQ, Plaquenil) · Helped a lot
That helped a lot but not 100%. It made me functional again but it can take up to 6 months to fully work.
In context ↗ - Ashwaghanda · Helped
I started taking Ashwaghanda around that time and think it may have helped some
In context ↗ - cream for my toes to help dilate them · Not said
A podiatrist put me on some cream for my toes to help dilate them I think.
In context ↗ - acid reducing medication · No change
Tried every acid medicine there was out there. Nothing helped.
In context ↗ - low histamine diet · Helped
I’ve already been pretty much eating a low histamine diet the last two months ... while some symptoms improved they haven’t gone away
In context ↗ - mattress elevator · Helped
another thing that helped me is buying a mattress elevator if you can afford it. Sleeping at an angle helps keep things down based on gravity
In context ↗ - gaviscon advance aniseed flavor · Helped
Also gaviscon advance aniseed flavor from the UK helps a lot to keep things down.
In context ↗ - alkaline water · Not said
I also bought some alkaline water to try in case Pepsin was causing the problems. Idk if it’s helping or to what extent but it doesn’t hurt.
In context ↗ - Zyrtec · Helped
One thing that did seem to help was me taking a Zyrtec before lunch each day.
In context ↗ - propranolol · Not said
The long COVID clinic just put me on propranolol and sent me to the neurologist and rheumatologist.
In context ↗ - nsaid · Worse
taking nsaid every day worsened it so I switched to Tylenol
In context ↗ - Tylenol · Worse
Now my liver on my last blood test is signaling that Tylenol is causing some very mild numbers to increase.
In context ↗ - CBD · Not said
So I’ve now been having to switch to CBD and some electrolyte drinks.
In context ↗ - electrolyte drinks · Helped
The electrolyte drinks seem to help a bit.
In context ↗ - vegan diet · No change
I was vegan before and after long COVID and hasn’t seemed to make a difference.
In context ↗ - luck and time · Helped
For me it’s luck and time. After a while things randomly started improving
In context ↗
Approaches: 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 2.1 years after onset: the story doesn’t say how ill they were before that. 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 |
|---|---|---|---|
| March 2020 | COVID-19 infection, start of long COVIDGained it all back after COVID in 2020 and haven’t been able to get it off or have the energy to get it off.In context ↗ | Not stated | |
| 2022 | autoimmune flares began: face rash, daily fevers, POTS, extreme fatigueI started getting flare ups, bright red face rash, extreme fatigue, pots, fevers every day.In context ↗ | Moderate | |
| 2022 | bed bound for much of the year, thought they would have to quit workLast year was the worst year of my life. I was bed bound for a lot of it. Thought I would not be able to work anymore and would have to quit my job.In context ↗ | Severe | |
| October 2022 | felt normal for the first time in a year on prednisoneThe first time I took it I finally felt normal for the first time in a year.In context ↗ | Near normal | Corticosteroid pulses |
| late 2022 | pain returned three times worse while tapering prednisoneThen when I had to start lowering the dose all the pain came back and felt 3X worse.In context ↗ | Severe | |
| April 2023 | started improving and could get through most work daysThen in April of this year something changed and I finally started improving. ... I can finally make it through most work daysIn context ↗ | Mild | Hydroxychloroquine / Plaquenil |
| 2023 | backslid after an earlier improvement when leaving a stressful jobI left a stressful job and things started getting better but then they reverted. ... I still backslid and aren’t where I should be.In context ↗ | Mild | |
| March 2025 | memory improved a bit but word-finding and memory still poorMy memory is terrible. It has improved a bit so at least it hasn’t gotten worse.In context ↗ | Mild |
Adverse events
- Amphetamine salts (Adderall)“The only side effect I’ve ever had from Adderall is trouble sleeping, so I have to take another medication for that.” In context ↗ Insomnia from treatment
- NSAIDs (unspecified)“I got into trouble with my stomach and taking nsaid every day worsened it so I switched to Tylenol.” In context ↗ Gut side effects
- Paracetamol / acetaminophen (Tylenol, Panadol)“Now my liver on my last blood test is signaling that Tylenol is causing some very mild numbers to increase.” In context ↗ Liver or kidney problems
Symptoms mentioned
Anxiety & low moodBrain fogBreathlessnessGut problemsHeadaches & migraineHeart symptoms & palpitationsMast cell (MCAS) & allergiesPOTS & dysautonomiaPain & fibromyalgiaTemperature regulation
Their words about their symptoms
- Brain fog
I can’t remember what several books that I read 6-13 months ago were about.
In context ↗ - POTS & dysautonomia
I’m still dealing with flares, sinus tachycardia, GI issues now, and unspecified dysautonomia
In context ↗ - Heart symptoms & palpitations
About 2-3 months after getting my 3rd vaccine I developed high blood pressure, tachycardia, and autoimmune disease
In context ↗ - Gut problems
I still get that burning in my throat sometimes
In context ↗ - Temperature regulation
I started getting flare ups, bright red face rash, extreme fatigue, pots, fevers every day.
In context ↗ - Mast cell (MCAS) & allergies
I think I was having some kind of histamine response from foods.
In context ↗ - Headaches & migraine
I get daily afternoon headaches for some reason.
In context ↗ - Breathlessness
I got so out of breath all the time climbing stairs.
In context ↗ - Anxiety & low mood
I think I'm entering another depression phase because I feel blah about everything right now.
In context ↗ - Pain & fibromyalgia
the pain came back and felt 3X worse
In context ↗
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