Mostly bedridden with long COVID, now somewhat better with LDN and nicotine patch
- Condition
- Long COVID
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- 8 months
- Last post
- Jun 2024
In their words
- Condition: Long COVID
I have had this since Oct 22, with months of being bedridden, then better, then a 6 month crash.
In context ↗ - At worst: Severe
Mostly bedridden for the first 5 months, then slow improvement.
In context ↗ - Now: Somewhat better
I'm starting to feel better again and I can't take any chances. ... The fatigue has hung on, but I'm better every day.
- Began after: COVID
Covid in Oct 22.
Read from 18 of their posts and comments; links to the 13 this page draws on
Summary
A 62-year-old woman developed long COVID after a mild infection in October 2022, becoming mostly bedridden for five months with tachycardia, headache, brain fog, tremors and PEM. She improved to about 50% by summer 2023, then a severe family stressor triggered a months-long crash. Low-dose naltrexone helped her sleep and energy, and a nicotine patch started in March 2024 gave her some of her life back. After that, a second infection caused renewed fatigue, though she was improving.
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What they tried
What they credit
Also tried
Their words about each treatment
- Paxlovid · Not said
chose not to do the Paxlovid this time because last time I still got LC
In context ↗ - LDN · Helped
It has helped me. It took awhile, started at .5, and felt instant energy and sleep improvement
In context ↗ - coconut water · Helped
Plain water just does not seem to give me the relief that coconut water does, even though it is mild relief.
In context ↗ - treating vagus nerve inflammation · Helped
I was convinced it is vagus nerve inflammation, and I started treating that, and it got better for a few days. But then it roared back the last few
In context ↗ - edibles · Not said
I was on edibles at night and LDN
In context ↗ - cold showers · Helped
Cold showers give me maybe 10 minutes of relief.
In context ↗ - supplements · Not said
I went off briefly, along with all my supplements, alcohol and cannabis
In context ↗ - nicotine patch · Helped a lot
I have been patching since mid march and it has really helped me. I started super low and went up slowly, but it gave me some of my life back.
In context ↗ - Metformin · Not said
I immediately went on Metformin
In context ↗
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 |
|---|---|---|---|
| October 2022 | mild COVID-19 infection, then nervous system symptomsMild initial case, then all the nervous system issues.In context ↗ | Mild | |
| January 2023 | tachycardia, ER visit, bedriddenMostly bedridden for the first 5 months, then slow improvement.In context ↗ | Severe | |
| summer 2023 | slow improvement to about half of normalSlowly got better, was around 50% by summerIn context ↗ | Mild | |
| September 2023 | crash after severe family stressI crashed in Sept, fatigue, tachycardia came back, internal tremors.In context ↗ | Moderate | |
| March 2024 | nicotine patch started, got some of her life backI have been patching since mid march and it has really helped me ... it gave me some of my life back.In context ↗ | Mild | Nicotine patches |
| May 2024 | second COVID infectionI'm 3 weeks out from my second infection, probably the same variant, because the throat pain was horrible.In context ↗ | Moderate | |
| June 2024 | recovering from reinfection, fatigue lingeringThe fatigue has hung on, but I'm better every day.In context ↗ | Mild |
Adverse events
- Low-dose naltrexone“started at .5, and felt instant energy and sleep improvement, but it gave me high blood pressure” In context ↗ Side effects
- Low-dose naltrexone“I very slowly went up to 1.75, but I quit sleeping” In context ↗ Insomnia from treatment
- Low-dose naltrexone“I very slowly went up to 1.75 ... I got serious depression” In context ↗ Mood or psychiatric effects
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
unless I push through and then I'm down for days, maybe weeks
In context ↗ - Brain fog
Brain fog never got better.
In context ↗ - POTS & dysautonomia
Today, back to the fatigue, dizzy, cotton brain, jumpy heart.
In context ↗ - Sleep problems
I have had severe insomnia my entire adult life, so I know what works.
In context ↗ - Headaches & migraine
never-ending headache for 5 months
In context ↗ - Heart symptoms & palpitations
Tachycardia and chest pain started in Jan, it was really bad for 2 months and is better.
In context ↗ - Muscle weakness
body loses all energy, and what I call spaghetti legs
In context ↗ - Neuropathy & tingling
feet start tingling and go partially numb
In context ↗ - Anxiety & low mood
The anxiety is crippling.
In context ↗ - Flu-like symptoms
low grade fever and skin pain
In context ↗ - Loss of smell or taste
Last time my smell was gone for a year, but it is already back
In context ↗ - Tinnitus
tinnitus gets super loud
In context ↗
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