Two years bedbound with long COVID, improved then relapsed after reinfection
- Condition
- Long COVID
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- 5 years
- Last post
- Aug 2025
In their words
- Condition: Long COVID
I am a longhauler from July 2020
In context ↗ - At worst: Severe
I was in bed for 2 years, no choice.
In context ↗ - Now: Relapsed
I was the best I’d been in ‘23 then got Omicron and it’s been downhill ever since.
In context ↗ - Began after: COVID
I am a longhauler from July 2020
In context ↗
Read from 23 of their posts and comments; links to the 17 this page draws on
Summary
Vale 45764, a woman in Montana, fell ill with long COVID in July 2020 and spent two years in bed. She improved by 2023, then an Omicron reinfection sent her downhill; at five years she was mostly homebound and not getting better. Low-dose naltrexone gave slight pain relief and better activity tolerance, while a medication for her liver and pancreas did nothing for her symptoms. A hand operation took four months to heal.
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What they tried
What they credit
Also tried
Their words about each treatment
- pacing · Helped
the sooner you learn to pace and change your life the sooner you will start to recover
In context ↗ - weekly therapy plus cognitive and speech therapy · Not said
I’ve done a lot of therapy to accept this new body and its limits.
In context ↗ - Loratadine · Helped
One thing I noticed and have had help with
In context ↗ - famotadine / acid reducer · Helped
Try an acid reducer with and take 40mg once daily
In context ↗ - nasal sprays (Covixyl, Luca V-defense) · Not said
I have used 2 different nasal sprays. I like the Covixyl (sp) and I’m using Luca V- defense.
In context ↗ - Beekeepers Naturals Propolis immune support mouth spray · Not said
I also use Beekeepers Naturals Propolis immune support mouth spray.
In context ↗ - saline nasal spray and neti pot · Not said
Using a saline nasal spray when you get home or a netti pot.
In context ↗ - cannabis (smoked and gummies) · Helped
It is the only thing that helps with the pain, anxiety and insomnia. Every day all day
In context ↗ - NAD+ · Helped
I was previously on NAD+, by my LC Dr
In context ↗ - LDN · Helped
I’ve noticed a slight reduction in my daily pain level. An increased baseline tolerance for stress and activity.
In context ↗ - Visible app and armband · Helped
And, if I stay in my budget, which is literally doing nothing, I feel better.
In context ↗ - shower chair · Helped
just started using a shower chair!!!! Game changer!!!
In context ↗ - Mounjaro / tirzepatide · No change
I never had a reduction in symptoms. Even w wt loss my pains are worse than ever
In context ↗ - Zofran (ondansetron) · Not said
The zofran is a must for me, but it has been for 5 years.
In context ↗ - Other surgery (adrenal, lung, venoplasty) · Not said
I had a simple in office procedure on my hand no sedation, but the 6-8 week healing process took me 4 months.
In context ↗
Approaches: H1 antihistamines · H2 blockers · Pacing
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 |
|---|---|---|---|
| July 2020 | long COVID onset, then two years in bedI was in bed for 2 years, no choice.In context ↗ | Severe | |
| 2023 | best she had been since onset, able to do things sometimesI was the best I’d been in ‘23In context ↗ | Moderate | |
| 2023 | Omicron infection, downhill sincethen got Omicron and it’s been downhill ever sinceIn context ↗ | Moderate | |
| March 2025 | slight pain reduction and better activity toleranceI’ve noticed a slight reduction in my daily pain level. An increased baseline tolerance for stress and activity.In context ↗ | Moderate | Low-dose naltrexone |
| July 2025 | five years in, still not getting betterI just had my 5 year anniversary and I am not getting better.In context ↗ | Moderate |
Adverse events
- Other surgery (adrenal, lung, venoplasty)“I had a simple in office procedure on my hand no sedation, but the 6-8 week healing process took me 4 months.” In context ↗ Other
- “a stress echo that almost made me pass out” In context ↗ Low blood pressure or fainting
- Tirzepatide (Mounjaro, Zepbound)“Even w wt loss my pains are worse than ever” In context ↗ Made symptoms worse
Symptoms mentioned
Their words about their symptoms
- Brain fog
I got lost, I knew where I was but couldn’t figure out where I was going.
In context ↗ - Pain & fibromyalgia
Even w wt loss my pains are worse than ever
In context ↗ - Sleep problems
It is the only thing that helps with the pain, anxiety and insomnia.
In context ↗ - Gut problems
More and I can’t sleep and my GI gets flared.
In context ↗ - Light & noise sensitivity
On the no screen or sound days I am able sometimes to really loose myself
In context ↗ - Heart symptoms & palpitations
a four hour chest pain episode that landed me in the ER over Thanksgiving
In context ↗
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