In bed almost all day with long COVID, now somewhat better after pain rehab and acyclovir
- Condition
- Long COVID
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- years (unspecified)
- Last post
- May 2025
In their words
- Condition: Long COVID
My lc doc said she found this the case for others as well.
In context ↗ - At worst: Severe
before this program I was in bed almost all day, I had severe symptoms in most categories
In context ↗ - Now: Somewhat better
My symptoms swing and I may have 4 straight months of difficult days and a week or 2 feeling ok.
In context ↗ - Began after: COVID
I have seen functional medicine drs pre and post covid, 2 different practices
Read from 10 of their posts and comments; links to the 9 this page draws on
Summary
Tide 66009 has had long COVID for years; before treatment they were in bed almost all day with severe symptoms in most categories. A three-week Mayo Clinic pain rehab program of OT, PT and CBT gave them much of their life back and they came off most medications. Acyclovir later greatly reduced their chronic headaches, but they still have pain, headaches, memory problems and swinging symptoms.
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What they tried
What they credit
Also tried
Their words about each treatment
- functional medicine doctors · No change
I have seen functional medicine drs pre and post covid ... and it was a huge waste of money
In context ↗ - Mayo clinic CSS/ pain rehab program · Helped a lot
What helped me was the Mayo clinic CSS/ pain rehab program. Gave me my life back
In context ↗ - graded walking (Mayo program advice) · Helped
What worked for me was advice from the Mayo program. First, start VERY slow ... but every week add a little more
In context ↗ - acyclovir · Helped
It reduced dramatically after I started acyclovir.
In context ↗ - cannabis · Helped
found cannibis and antivirals really helpful
In context ↗ - sumatriptan · Not said
I take sumatriptan but the best relief I get is a 2:1 cbd Thc gummy
In context ↗ - cognitive rehab · Not said
I’ve been doing my own rehab, starting with 2nd grade level.
In context ↗
Approaches: Other drugs and medicines
Their path
How ill they were on the ME/CFS severity scale, estimated from what they describe at each point, in the order they describe; they don’t give enough times to place each step. Hover or tap a point. 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 |
|---|---|---|
| — | Long COVID; mostly in bedbefore this program I was in bed almost all day, I had severe symptoms in most categories, complete disconnection from myself and the world.In context ↗ | Severe |
| March 2024 | Pain rehab program gave them much of their life backGave me my life backIn context ↗ | Mild |
| January 2025 | Improving in all areas but cannot retain new informationI’m overall improving in all areas but still unable to retain anything new.In context ↗ | Mild |
| by May 2025 | Symptom flares after several reinfectionsYes, I’ve had it several more times. Flare of symptoms, but they go away.In context ↗ | Not stated |
| May 2025 | Acyclovir helping; symptoms still swingMy symptoms swing and I may have 4 straight months of difficult days and a week or 2 feeling ok.In context ↗ | Moderate |
Symptoms mentioned
Their words about their symptoms
- Headaches & migraine
Yes it was awful for years. It reduced dramatically after I started acyclovir.
In context ↗ - Brain fog
I’m overall improving in all areas but still unable to retain anything new.
In context ↗ - Anxiety & low mood
my super down days are just my chemical depression /condition talking
In context ↗ - Loss of smell or taste
Mine came back gradually and continues to improve
In context ↗ - Post-exertional malaise
mostly from push/ crashing
In context ↗ - Pain & fibromyalgia
The headaches and pain are chronic in nature, awful, but not causing damage.
In context ↗
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