Long COVID with severe pain, gut and heart problems, now 90% cleared
- Condition
- Long COVID
- At worst
- Moderate (mostly housebound)
- Ill before improving or writing
- 20 months
- Last post
- Jul 2023
In their words
- Condition: Long COVID
Ive had long covid like 18 months.
In context ↗ - At worst: Moderate
I'm actually in the process of applying for disability. ... I still have GI and heart issues 20 months later.
- Now: Much better
90% of my Long Covid issues cleared up but I still have GI and heart issues 20 months later.
In context ↗ - Began after: COVID
Had Covid almost a year later got long Covid.
In context ↗
Read from 9 of their posts and comments; links to the 9 this page draws on
Summary
Wave 98490 developed long COVID after a COVID-19 infection; their long COVID peaked about three months later, around when they had shingles and severe pain, and they also had gut, heart and anxiety problems. A reinfection treated with Paxlovid briefly cleared many symptoms, but they returned, including a heart problem. By July 2023 they said 90% of their long-COVID issues had cleared, though GI and heart issues remained 20 months after onset; they were applying for disability.
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What they tried
What they credit
Also tried
Their words about each treatment
- medical cannabis · Helped
I used medical cannabis for my ptsd. It helps a lot personally but not enough to improve real world functioning.
In context ↗ - diet changes · Not said
I think its a happy coincidence because of diet changes from gut problems.
In context ↗ - valacyclovir · No change
They put me on valacyclovir but I didn't notice a difference.
In context ↗ - Vicodin · Not said
Then the Shingles Rash finally showed up and I got a script of Vicodin.
In context ↗ - Paxlovid · Helped
I got Covid again maybe 6 weeks ago and took Paxlovid ... many of my long covid problems actually disappeared. They started returning last week
In context ↗ - Linzess · Worse
I take 290mg Linzess every morning. A lower dose doesn't work and this one causes diarrhea every day so far for a couple months
In context ↗
Approaches: Antivirals
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 3 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 |
|---|---|---|---|
| 2021 | COVID-19 infection followed by long COVIDHad Covid almost a year later got long Covid.In context ↗ | Not stated | |
| about 3 months after Covid | Long COVID peakedMy Long Covid peaked about 3 months after having Covid and now its been over a hear and I still have issues.In context ↗ | Moderate | |
| April 2023 | many long-COVID problems disappeared after reinfection and PaxlovidEven though I had Covid and felt awful many of my long covid problems actually disappeared.In context ↗ | Moderate | Paxlovid / nirmatrelvir |
| April 2023 | symptoms returned and heart electrical problem appearedThey started returning last week and include an electrical problem with my heart now.In context ↗ | Moderate | |
| July 2023 | 90% of long-COVID issues cleared but GI and heart issues remained90% of my Long Covid issues cleared up but I still have GI and heart issues 20 months later.In context ↗ | Mild |
Adverse events
- Paxlovid / nirmatrelvir“Not only was my Covid was less severe but outside of my GI tract worsening it seems like I feel a bot better” In context ↗ Gut side effects
- Linaclotide (Linzess)“I take 290mg Linzess every morning. A lower dose doesn't work and this one causes diarrhea every day so far for a couple months and I can't leave my house for roughly 4 hours” In context ↗ Gut side effects
Symptoms mentioned
Their words about their symptoms
- Gut problems
Covid wrecked my GI everything.
In context ↗ - Heart symptoms & palpitations
still have GI and heart issues 20 months later.
In context ↗ - Neuropathy & tingling
I have neuropathy in my feet though and that's the bad pain.
In context ↗ - Pain & fibromyalgia
Constipation, cramps abdominal spasms,, gas and chronic pain everyday.
In context ↗ - Anxiety & low mood
Major Depression, anxiety with panic attacks and cPTSD doesn't help.
In context ↗ - Vision problems
vision got dark and tunnel like but I didn't completely pass out.
In context ↗ - POTS & dysautonomia
I browned out, lol, vision got dark and tunnel like but I didn't completely pass out.
In context ↗
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