Long COVID
Severe → much betterIll 3 years before improving or writingNeeds ongoing treatment
Bedridden with long COVID relapses for months, much better with rest and gabapentin
- Condition
- Long COVID
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- 3 years
- Last post
- Mar 2023
In their words
- Condition: Long COVID
Longhauler since March 2020.
In context ↗ - At worst: Severe
At the worst, for months I was at 20% on my good days which were maybe 20% of all my days.
In context ↗ - Now: Much better
I’m doing better now than I have since I got this illness, for the most part. ... But I’m still not 100%.
In context ↗ - Began after: COVID
My initial infection was mid-March 2020
Read from 31 of their posts and comments; links to the 23 this page draws on
Summary
Eagle 23163 developed long COVID in March 2020 and was bedridden with relapses for months, at worst functioning at 20% on good days and unable to walk 15–20 minutes without crashing. Rest, avoiding alcohol, spicy foods and exertion, plus gabapentin, acid reducers and a supplement stack including lion’s mane, niacin and NAC, brought gradual improvement. By March 2023 they were better than at any point but still not 100%, with lingering anhedonia, mild dysautonomia and deconditioning.
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What they tried
What they credit
Also tried
kefir· HelpedPepcid (famotidine)· HelpedVyvanse· Helpedinhaled nicotine (Juul)· Helpedcannabis· Helped · wore offavoiding alcohol, spicy, acidic and fried foods· HelpedNatures Plus nicotinic acid· HelpedPantoprazole· Helpedaspirin· HelpedJarrow Formulas Ubiquinol QH Absorb· HelpedBioSchwartz Bone Strength (magnesium, D3, K2)· HelpedNOW 5-HTP· HelpedNOW EGCg· HelpedZyrtec· Helpedphenylephrine· HelpedNOW Taurine· No changeketamine· No changePhysical therapy / physiotherapy· WorseB vitamins· Not saidvitamin D· Not saidALCAR· Not saidvitamin C· Not saidzinc· Not said
Their words about each treatment
- B vitamins · Not said
I was already supplementing with B, D, ALCAR, also C, zinc prior to the initial illness.
In context ↗ - kefir · Helped
Yes, even before long Covid it was great for an optimal headspace.
In context ↗ - Pepcid (famotidine) · Helped
prescribed me Pepcid for the GI symptoms, and that has helped with the stomach pain, indigestion, and diarrhea but not the other symptoms.
In context ↗ - Vyvanse · Helped
prescribed me Vyvanse for the brain fog ... I’d be losing my job without the Vyvanse helping me think.
In context ↗ - gabapentin · Helped a lot
Gabapentin 300mg, three times daily without food. Miracle drug for me for irritability, peripheral nerve pain, lower back pain, appetite, anxiety, insomnia.
In context ↗ - turmeric supplement · Helped
I did see improvement in symptoms when I added in a turmeric supplement, which I know really helps reduce inflammation.
In context ↗ - inhaled nicotine (Juul) · Helped
The only way inhaled nicotine has helped me is when the pain gets really bad - nicotine is good at taking the “edge” off.
In context ↗ - cannabis · Helped
Cannabis helped my appetite a lot at first but not so much anymore. It’s still a godsend for the nausea I experience on a daily basis.
In context ↗ - avoiding alcohol, spicy, acidic and fried foods · Helped
Avoiding alcohol and spicy foods completely has also been necessary for me.
In context ↗ - Natures Plus nicotinic acid · Helped
the most helpful treatments I’ve found are nicotinic acid, turmeric, and gabapentin
In context ↗ - Pantoprazole · Helped
Pantoprazole 40mg, once daily without food. Acid-reducer, has definitely helped my GI issues.
In context ↗ - Real Mushrooms Lion’s Mane · Helped a lot
Real Mushrooms Lion’s Mane 1500mg, broken into two daily doses without food. This has given the biggest boost to my cognitive function.
In context ↗ - rest and limiting physical activity · Helped
I limit my physical activity, and I rest/sleep whenever I feel I need it. ... I truly believe the rest has helped a lot too.
In context ↗ - aspirin · Helped
81mg aspirin, once daily with food. Helps prevent blood clots and some cognitive issues.
In context ↗ - Jarrow Formulas Ubiquinol QH Absorb · Helped
Jarrow Formulas Ubiquinol QH Absorb 200mg, twice daily with food. Helps with energy production and cardiac issues.
In context ↗ - NOW Taurine · No change
NOW Taurine 1000mg, twice daily without food. Can’t say I’ve seen direct benefits
In context ↗ - NOW NAC · Helped
NAC been in my stack for a while and its helped so much with my cognitive function even before I got sick.
In context ↗ - BioSchwartz Bone Strength (magnesium, D3, K2) · Helped
BioSchwartz Bone Strength, two capsules twice daily with food. Helps modulate immune response and relieve depression.
In context ↗ - NOW 5-HTP · Helped
NOW 5-HTP 100mg, once nightly. Precursor to serotonin to help relieve depression.
In context ↗ - NOW EGCg · Helped
NOW EGCg 400mg, once nightly. Helps the 5-HTP cross the blood-brain barrier.
In context ↗ - Zyrtec · Helped
Zyrtec 10mg, once nightly. Antihistamine, reduces systemic inflammation.
In context ↗ - l-tyrosine · Helped
Lions Mane + niacin + l-tyrosine are helping me a lot nowadays
In context ↗ - ketamine · No change
Administered intranasally. Made me puke every time, even with nothing in my stomach for hours, so I won’t be doing it again (gave it 3 tries).
In context ↗ - phenylephrine · Helped
when I got reinfected with Covid recently I had a worsening in congestion along with pressure in the head and PE helped a bit.
In context ↗ - Physical therapy / physiotherapy · Worse
my Dr won’t even let me do physical therapy because that caused a relapse
In context ↗
Approaches: Amino acids and carnitine · Other drugs and medicines · Pacing · Supplements
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 9 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 |
|---|---|---|---|
| March 2020 | COVID-19 infectionLonghauler since March 2020.In context ↗ | Not stated | |
| April 2020 | relapse after strenuous moveI spent 3 days, 18 hrs/day moving ... a week after that boom awful relapseIn context ↗ | Not stated | |
| December 2020 | medical leave and rest allowed some healingAt month 9 I went on medical leave and finally could really really rest, and I think that allowed me to heal somewhat.In context ↗ | Severe | |
| February 2021 | bedridden, 20% on good daysAt the worst, for months I was at 20% on my good days which were maybe 20% of all my days.In context ↗ | Severe | |
| March 2021 | better while avoiding triggers and taking many pillsI am doing better but I think only because I’m avoiding all triggers and taking 400+ pills per week.In context ↗ | Severe | Pacing and the energy envelope |
| April 2021 | relapse after grocery shoppingGot a relapse because I went grocery shopping.In context ↗ | Severe | |
| May 2021 | 30% on good days, less nausea and vomitingNow I’m at 30% on my good days and those are probably 25% of my days.In context ↗ | Severe | Pacing and the energy envelope |
| August 2021 | Lions Mane, niacin and l-tyrosine helping a lotLions Mane + niacin + l-tyrosine are helping me a lot nowadaysIn context ↗ | Moderate | |
| March 2023 | better than at any point but not 100%I’m doing better now than I have since I got this illness, for the most part. ... But I’m still not 100%.In context ↗ | Mild |
Adverse events
- “I even had a relapse from the contrast media for the mri.” In context ↗ Made symptoms worse
- Physical therapy / physiotherapy“my Dr won’t even let me do physical therapy because that caused a relapse” In context ↗ Made symptoms worse
- “As far as the flushing from niacin, I think it went away after about a month of twice daily usage.” In context ↗ Side effects
- Gabapentin (Neurontin)“There are side effects and uncomfortable withdrawal symptoms can occur, but they’re not that bad in my experience” In context ↗ Side effects
- Gabapentin (Neurontin)“There are side effects and uncomfortable withdrawal symptoms can occur, but they’re not that bad in my experience” In context ↗ Withdrawal problems
- Ketamine“Made me puke every time, even with nothing in my stomach for hours, so I won’t be doing it again (gave it 3 tries).” In context ↗ Gut side effects
Symptoms mentioned
Anxiety & low moodBrain fogBreathlessnessGut problemsHeadaches & migraineHeart symptoms & palpitationsNeuropathy & tinglingPOTS & dysautonomiaPain & fibromyalgiaPost-exertional malaiseSleep problemsTemperature regulation
Their words about their symptoms
- Post-exertional malaise
I can’t even go grocery shopping or walk for 20 min without a relapse.
In context ↗ - Brain fog
my cognitive function is 20% of normal on a good day
In context ↗ - POTS & dysautonomia
dysautonomia (mild tho at this point)
In context ↗ - Pain & fibromyalgia
peripheral nerve pain, lower back pain
In context ↗ - Headaches & migraine
chronic migraines for 5 years
In context ↗ - Gut problems
I rarely have GI issues anymore
In context ↗ - Breathlessness
mid-sentence pauses for breaths
In context ↗ - Heart symptoms & palpitations
sitting up causes my heart rate to spike & severe dizziness
In context ↗ - Neuropathy & tingling
Neuropathy was a big issue for a while but it’s not constant anymore and not nearly as severe, I’d say 90% gone.
In context ↗ - Anxiety & low mood
Anhedonia is the most vexing and lingering one
In context ↗ - Temperature regulation
Low-grade fever since March here as well.
In context ↗
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