Long COVID
Severe → relapsedIll 5 years before improving or writingNeeds ongoing treatment
Bed bound with long COVID, improved on acupuncture and PPI, now housebound, daily crashes
- Condition
- Long COVID
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- 5 years
- Last post
- May 2026
In their words
- Condition: Long COVID
I got covid right at the start of the pandemic and long hauled for 8 months.
In context ↗ - At worst: Severe
I have worked through mine even when I was bed bound.
In context ↗ - Now: Relapsed
during the trip at times felt at 80% of my former functioning which is the best I've felt in 3 years ... I am now housebound most days, and prior to this experience I could do things like go hiking.
- Began after: a vaccination
And yes, this all started after my second dose of moderna
Read from 46 of their posts and comments; links to the 25 this page draws on
Summary
Maple 46293 had COVID in March 2020 and long hauled for eight months before a full recovery. A second Moderna dose in March 2021 caused a worse long haul with dysautonomia, gastritis and insomnia; they were bed bound and worked from bed. Acupuncture, a PPI, melatonin and lorazepam helped; they reached 50-60% of their old functioning by two years. In 2026 they were housebound most days with daily crashes after prednisone.
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What they tried
What they credit
Also tried
Their words about each treatment
- Prilosec · Helped
I'm still having to take prilosec daily but I'm much better than I was
In context ↗ - Ativan (lorazepam) · Helped a lot
For me Ativan (lorazepam) worked like a charm when almost nothing else did
In context ↗ - acupuncture · Helped a lot
Acupuncture. Seriously. It's helped me more than anything else.
In context ↗ - melatonin · Helped
am now sleeping through the night about 50% of the time with just melatonin
In context ↗ - CBD flower and CBD gummies · Helped
smoking CBD flower and eating multiple CBD gummies -- that worked too but it interfered with my stomach med so I couldn't continue using it
In context ↗ - vitamin D · Not said
I'm on high doses of both and I can't even get to the mid-range of normal
In context ↗ - b vitamins · Worse
It got way worse when I started increasing my b vitamins so I had to stop.
In context ↗ - neural retraining program · Helped
I've started a neural retraining program that does seem to be improving my sleep
In context ↗ - functional medicine clinic · Helped
now that I'm doing treatment with them, I'm finally starting to see some results
In context ↗ - red light therapy · Much worse
after 30 seconds of exposure on one of my hands, my hand swelled up like a balloon and it sent me into a brain fog flare. It took me weeks to recover from that
In context ↗ - cutting out dairy · Helped
I cut out dairy and it helped
In context ↗ - Epsom salt bath · Not said
Like an Epsom salt bath, acupuncture, or grounding outside.
In context ↗ - prednisone · Much worse
I did terribly. My heart rate was fluctuating between high and low, like spiking to 120 and dropping to 60 in about two minutes while laying down
In context ↗ - COVID vaccination as treatment · Worse
started having a severe reaction literally the minute I was injected. My vaccine reaction was so much worse than long covid for me
In context ↗
Approaches: Proton pump inhibitors · Alternative therapies · Benzodiazepines · 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 8 months 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 2021 | severe reaction minutes after second Moderna doseWithin 5 minutes of my dose I started having heart palpitations, then it escalated to my heart beating out of my chestIn context ↗ | Not stated | |
| November 2021 | at their sickest, bed bound and working from bedI developed full-blown dysautonomia right out of the gate and was at my sickest 8 months inIn context ↗ | Severe | |
| 2022 | small improvements began after the worst pointI still can't do the things I used to do or even want to do, but I can do way more than I was doing even a year agoIn context ↗ | Moderate | |
| October 2022 | setback after a cold/virusI had a big setback 3 months ago when I got hit with some sort of cold/virus but am still doing okIn context ↗ | Moderate | |
| October 2022 | insomnia returned after a flu-like illnessA few weeks ago I finally started sleeping through the night and then I got some flu like illness and how it's back in full swingIn context ↗ | Moderate | |
| January 2023 | reached about 50-60% of previous functioningI think I'm at like 50-60% of my previous functioning. Last year I was maybe at 30%In context ↗ | Mild | |
| January 2023 | job stress brought panic attacks, nerve pain, POTS and insomnia backuntil my job started getting so stressful that I started having panic attacks over it, and now the nerve pain is back in my fingersIn context ↗ | Moderate | |
| April 2023 | travelled to several national parks and coped wellLast week I went to the Grand Canyon, Antelope Canyon, and the Painted Desert, and I did so well that honestly nobody would have even known I was sickIn context ↗ | Mild | |
| July 2024 | travelled abroad and at times felt 80% of former functioningduring the trip at times felt at 80% of my former functioning which is the best I've felt in 3 yearsIn context ↗ | Mild | |
| December 2024 | cutting out dairy helpedEveryone is different, but I cut out dairy and it helpedIn context ↗ | Mild | Elimination diets (other) |
| May 2026 | daily crashes and tremors after a prednisone courseSince stopping the prednisode 3 weeks ago, I have been having crashes daily, my muscles shake with useIn context ↗ | Moderate | Corticosteroid pulses |
| May 2026 | housebound most days, questioning whether it is ME/CFSI am now housebound most days, and prior to this experience I could do things like go hikingIn context ↗ | Moderate |
Adverse events
- COVID vaccination as treatment“I got my second dose of moderna 3 days ago and last night I didn't sleep at all. I went to the ER and they could find nothing wrong with me.” In context ↗ Insomnia from treatment
- COVID vaccination as treatment“Within 5 minutes of my dose I started having heart palpitations, then it escalated to my heart beating out of my chest, ringing in my ears, vibration in my head and feeling like I couldn't breathe.” In context ↗ Heart rhythm problems
- COVID vaccination as treatment“A few months later I was diagnosed with severe gastritis after no previous history of GI problems.” In context ↗ Gut side effects
- COVID vaccination as treatment“started having a severe reaction literally the minute I was injected. My vaccine reaction was so much worse than long covid for me” In context ↗ Made symptoms worse
- Vitamin B complex“It got way worse when I started increasing my b vitamins so I had to stop.” In context ↗ Made symptoms worse
- Red and near-infrared light therapy“after 30 seconds of exposure on one of my hands, my hand swelled up like a balloon and it sent me into a brain fog flare. It took me weeks to recover from that” In context ↗ Allergic reaction / anaphylaxis
- Corticosteroid pulses“My heart rate was fluctuating between high and low, like spiking to 120 and dropping to 60 in about two minutes while laying down ... after my last dose, my entire body tremored for an hour and my heart rate spiked to 163.” In context ↗ Heart rhythm problems
- Corticosteroid pulses“Since stopping the prednisode 3 weeks ago, I have been having crashes daily, my muscles shake with use, and my internal tremors are very intense when I sit up or engage my muscles at all.” In context ↗ Made symptoms worse
Symptoms mentioned
Anxiety & low moodBrain fogBreathlessnessFlu-like symptomsGut problemsHeart symptoms & palpitationsMast cell (MCAS) & allergiesNeuropathy & tinglingPOTS & dysautonomiaPost-exertional malaiseSleep problemsTemperature regulationTinnitusVision problems
Their words about their symptoms
- Post-exertional malaise
I typically crash on the weekends after a week of work, or after a big outing
In context ↗ - Brain fog
I've got brain fog and neuro issues
In context ↗ - POTS & dysautonomia
my POTS symptoms aren't completely gone but they are significantly better
In context ↗ - Mast cell (MCAS) & allergies
diagnose me with pre-existing MCAS I've probably had my entire life
In context ↗ - Sleep problems
I also have terrible insomnia and often wake up after 4 hours
In context ↗ - Gut problems
I'm still having to take prilosec daily but I'm much better than I was
In context ↗ - Heart symptoms & palpitations
my heart rate has been more reactive since this time
In context ↗ - Neuropathy & tingling
the nerve pain is back in my fingers
In context ↗ - Anxiety & low mood
my panic attacks and SI would happen when I hadn't slept
In context ↗ - Flu-like symptoms
had issues with ongoing fevers, GI problems, and involuntary shivers for about 8 months
In context ↗ - Breathlessness
ringing in my ears, vibration in my head and feeling like I couldn't breathe
In context ↗ - Tinnitus
I pretty much always wake up with intense visual snow and tinnitus
In context ↗ - Temperature regulation
I've also been cold and pale and my heart rate has been more reactive since this time
In context ↗ - Vision problems
my vision seems to have improved a little
In context ↗
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