Severe long COVID with neuropathy and POTS, somewhat better after ketamine infusions
- Condition
- Long COVID
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- 3 years
- Last post
- Oct 2024
In their words
- Condition: Long COVID
I had long covid and after 4 months I finally got better.
In context ↗ - At worst: Severe
I literally was crawling after dose 1! It’s been approx 1000 of pure hell ever since and never stopped.
In context ↗ - Now: Somewhat better
It’s been 3 years and I’m at like 40 perfect. That’s not enough to function half way!
In context ↗ - Began after: COVID
I had long covid and after 4 months I finally got better
In context ↗
Read from 20 of their posts and comments; links to the 13 this page draws on
Summary
Dune 71313 recovered from four months of long COVID, then went down hard six days after a COVID vaccine and stayed severely ill with small fibre neuropathy, dysautonomia, POTS and chest pain. Ketamine infusions stopped their leg jerks the same day and eased anxiety, pain and some autonomic symptoms, but by March 2024 they were at about 40% of normal function and medications only partly controlled their pain.
Ask Miruvor AI
What they tried
What they credit
Also tried
Their words about each treatment
- salt and water · Not said
10 grams of salt and ounces of water for 2 years.
In context ↗ - ketamine infusion therapy · Helped a lot
I have finally coped after 27 long torturous months by doing ketamine infusion therapy!
In context ↗ - gabapentin · Helped
Gabapentin and alpha Lipoic acid finally have it under control!
In context ↗ - alpha lipoic acid · Helped
Gabapentin and the antioxidant alpha Lipoic acid help me make it!!
In context ↗ - Nicorette gum · Worse
I chewed one 7 mg piece of Nicorette and it gave me the worst adrenaline dump ever.
In context ↗ - allergy shots · No change
I received allergy shots after LC and no negative effect on my LC.
In context ↗ - cymbalta · Helped
Gabapentin and cymbalta for pain, beta blockers, calcium channel blockers, torodol, baclofen . . And it only does so much!!
In context ↗ - COVID vaccination as treatment · Worse
6 days after vax I went down hard and it’s been 29 months the of pure hell with small fiber neuropathy and dysautonomia.
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, with time counted from when the illness began. Hover or tap a point. The chart starts 4 months after onset: the story doesn’t say how ill they were before that. 2 steps say too little to place on the scale and are only in the table. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were | After |
|---|---|---|---|
| onset | COVID-19 followed by long COVIDI had long covid and after 4 months I finally got betterIn context ↗ | Not stated | |
| 4 months later | Recovered from long COVIDafter 4 months I finally got betterIn context ↗ | Recovered | |
| 6 days after vaccination | Went down hard after COVID vaccine and never returned to baseline6 days after vax I went down hardIn context ↗ | Severe | |
| September 2023 | Ketamine infusions; leg jerks stopped the same dayI have finally coped after 27 long torturous months by doing ketamine infusion therapy! I might actually get my life backIn context ↗ | Not stated | Ketamine |
| 2024-03-21 | Rated themselves about 40% of normal function, still on pain and autonomic medicationsIt’s been 3 years and I’m at like 40 perfect. That’s not enough to function half way!In context ↗ | Moderate | Ketamine |
Adverse events
- COVID vaccination as treatment“6 days after vax I went down hard and it’s been 29 months the of pure hell with small fiber neuropathy and dysautonomia.” In context ↗ Made symptoms worse
- COVID vaccination as treatment“I was at the point to where I wished that vax killed me. The “lucky” ones died from it.” In context ↗ Suicidal thoughts or attempt
- Nicotine patches“Man I chewed one 7 mg piece of Nicorette and it gave me the worst adrenaline dump ever.” In context ↗ Side effects
Symptoms mentioned
Their words about their symptoms
- Neuropathy & tingling
Turns out mine was small fiber neuropathy causing cranial neuropathy.
In context ↗ - POTS & dysautonomia
Also have POTS, IST, Dysautonomia.
In context ↗ - Pain & fibromyalgia
Gabapentin and cymbalta for pain
In context ↗ - Heart symptoms & palpitations
the chest pain is severe sometimes
In context ↗ - Anxiety & low mood
Ketamine helped with the health related anxiety that every chronically ill person has.
In context ↗
Ask Miruvor AI
Similar stories
-
Bedbound with ME/CFS for three years, now much better with methylene blue
Undiagnosed mild ME/CFS for years, Hill 46448 became severe after a concussion and a crash that left her bedbound about three years, needing a power wheelchair and diapers. She credits compounded methylene blue most, alongside POTS drugs, LDN, NAD-ketamine…
-
Very severe and bedridden with ME/CFS, now somewhat better with pacing and rest
Osprey 98184 became ill with COVID in December 2022 and declined from mild, active (20,000 steps) to very severe and bedridden after crashes in 2024–25. They credited pacing, rest, mestinon and low-dose ketamine lozenges with slow cognitive improvement from…
-
Moderate to severe ME/CFS, now mostly mild with esketamine
After years of fatigue put down to severe treatment-resistant depression, Moon 62809 took esketamine (Spravato) and went from moderate/severe ME to mostly mild within a few weeks. A bupropion-dextromethorphan combination had helped but caused awful side…
-
Not enough detail to draw a path
Severe ME/CFS, mostly bedbound, brief gains from ketamine and enoxaparin then relapse
Beacon 76527 was diagnosed with severe ME/CFS in 2014 and stayed mostly bedbound, severe or very severe, for over a decade. A second Pfizer vaccine in 2021 left them 24/7 bedbound for about five months, and they came out of it slowly with strict rest and…