Long COVID
Severe → much betterIll 11 months before improving or writing
Long COVID unable to work and mostly in bed, much better with time and increasing activity
- Condition
- Long COVID
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- 11 months
- Last post
- Nov 2023
In their words
- Condition: Long COVID
I got 4 vaccine doses and took Paxlovid and still got severe long covid.
In context ↗ - At worst: Severe
I had to stay with my mom for ~2 months of it because I couldn’t care for myself and was either in bed or on the couch most of the time.
In context ↗ - Now: Much better
Ps. I’m better now but I still have dysautonomia 10.5 months later…
In context ↗ - Began after: COVID
I was vaxxed 4 times and took Paxlovid when I got infected for the first time in November 2022.
Read from 69 of their posts and comments; links to the 26 this page draws on
Summary
Alpine 17751, 30, developed severe long COVID after a COVID infection in November 2022 despite four vaccine doses and Paxlovid; she rebounded for a week and couldn't work for the first four months, spending about two of them unable to care for herself and mostly in bed or on the couch. She improved month by month, crediting time and slowly increasing activity, and by around ten and a half months could walk an hour, though POTS, migraines and GI flares persisted.
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What they tried
What they credit
Also tried
Propranolol· HelpedBovine colostrum (ARMRA)· HelpedMagnesium· HelpedNurtec· HelpedAir purifier· HelpedMeditation· HelpedAntihistamine· No changeSalt, fluids and compression· No changeStretching· No changePaxlovid· Not saidRadical rest· Not saidFatty15 (pentadecanoic acid)· Not saidMitoQ· Not saidAcupuncture· Not saidAnti-inflammatory diet· Not saidFiber· Not saidWarm baths· Not saidMultivitamin· Not saidElectrolytes· Not saidVitamin D3 + K2· Not saidTurmeric· Not saidCO-Q10· Not saidUrolithin A· Not saidGreen tea extract· Not saidZinc· Not saidVitamin C· Not said
Their words about each treatment
- Paxlovid · Not said
I took Paxlovid and I think it helped my symptoms chill out a bit.
In context ↗ - Radical rest · Not said
I’ve been trying to take a “radical rest” approach to this illness
In context ↗ - Propranolol · Helped
I’ve been prescribed a low dose (10mg) of Propranolol and it helps lower my heart rate
In context ↗ - Bovine colostrum (ARMRA) · Helped
my sinus issues improved greatly after ~4 months once I started taking bovine colostrum.
In context ↗ - Fatty15 (pentadecanoic acid) · Not said
I also started taking Fatty15 to hopefully repair any potential mitochondrial damage and help my immune system balance out.
In context ↗ - MitoQ · Not said
I started MitoQ about a month after Fatty15. But I’ve only been taking a half dose (1 pill) per day.
In context ↗ - Magnesium · Helped
I started taking ~400mg of magnesium everyday around the time it improved.
In context ↗ - Antihistamine · No change
Antihistamines weren’t doing sh*t for me.
In context ↗ - Nurtec · Helped
I found relief taking Nurtec last year (pre-covid).
In context ↗ - Air purifier · Helped
I also purchased an air purifier a few weeks ago when my sinuses started to act up. ... I think it’s helped
In context ↗ - Salt, fluids and compression · No change
I wear compression socks, eat salty snacks, hydrate, rest, etc etc etc and it honestly doesn’t seem to make too much of a difference.
In context ↗ - Graded activity / walking · Helped
Probably due to time snd slowly becoming more active.
In context ↗ - Meditation · Helped
Here’s a relaxing meditation video that has helped me find calm
In context ↗ - Acupuncture · Not said
Practicing meditation, acupuncture, getting enough sleep
In context ↗ - Anti-inflammatory diet · Not said
My diet is anti-inflammatory and rich in anti-oxidants.
In context ↗ - Fiber · Not said
I take vitamins, bovine colostrum, fiber, etc.
In context ↗ - Warm baths · Not said
I rest A LOT, take warm baths, and take vitamins/supplements.
In context ↗ - Stretching · No change
Stretching doesn’t seem to help.
In context ↗ - Vitamin D3 + K2 · Not said
Vitamin D3 + K2
In context ↗ - Green tea extract · Not said
Green tea extract
In context ↗ - Zinc · Not said
I used to take others like Zinc, Vitamin C, etc.
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 |
|---|---|---|---|
| November 2022 | COVID infection; near-fainting on day 2, then bed or couch most of the day for monthsI had to stay with my mom for ~2 months of it because I couldn’t care for myself and was either in bed or on the couch most of the time.In context ↗ | Severe | |
| December 2022 | Paxlovid rebound: tested positive again and highly symptomatic for 7 daysmy symptoms started to worsen and I tested positive again and was HIGHLY symptomatic (very, very sick) for 7 daysIn context ↗ | Severe | |
| March 2023 | feeling better overall while still highly symptomaticIt’s been 4 months since I first tested positive for covid and I feel better overall but I still have a slew of symptoms.In context ↗ | Moderate | Time and spontaneous remission |
| July 2023 | mostly housebound but able to drive to appointments and run errandsI would say I’m mostly housebound but I can go to appointments and run errands since I mostly drive to my destinations.In context ↗ | Moderate | Time and spontaneous remission |
| September 2023 | GI flare for about 1.5 weeks, down to broth, crackers and baby foodI had a horrible gastrointestinal flare a couple of weeks ago that lasted about 1.5 weeksIn context ↗ | Mild | |
| October 2023 | walked an hour without a crash though POTS flared; dysautonomia persistsI walked at a normal speed for ~1 hour (trying to keep up with a friend) and I was surprisingly okay aside from the POTS flaring up (140-170bpm).In context ↗ | Mild |
Adverse events
- Lactoferrin and colostrum“within the first 1.5 weeks of taking ARMRA, it flared up quite a bit for a few days” In context ↗ Made symptoms worse
- Paxlovid / nirmatrelvir“It gave me a metallic taste in my mouth but no other side effects.” In context ↗ Side effects
- Paxlovid / nirmatrelvir“I took Paxlovid and had an intense, highly symptomatic 7-day rebound that was confirmed via rapid antigen tests.” In context ↗ Made symptoms worse
Symptoms mentioned
Anxiety & low moodBreathlessnessFlu-like symptomsGut problemsHair lossHeadaches & migraineHeart symptoms & palpitationsLight & noise sensitivityMuscle weaknessNeuropathy & tinglingPOTS & dysautonomiaPain & fibromyalgiaPost-exertional malaiseSleep problemsTemperature regulationTinnitusVision problems
Their words about their symptoms
- POTS & dysautonomia
I’m better now but I still have dysautonomia 10.5 months later…
In context ↗ - Post-exertional malaise
I try not to push myself in general but the other week I crashed.
In context ↗ - Sleep problems
I also still get unrefreshing sleep and difficulty waking up sometimes
In context ↗ - Pain & fibromyalgia
My muscle soreness has improved a lot! It used to be very frequent and painful.
In context ↗ - Headaches & migraine
My migraines are still hitting me at the same rate and severity but Nurtec really helps.
In context ↗ - Gut problems
I had a horrible gastrointestinal flare a couple of weeks ago that lasted about 1.5 weeks
In context ↗ - Light & noise sensitivity
I also have congestion, intermittent sound sensitivity
In context ↗ - Breathlessness
I felt like I was breathing more intensely too.
In context ↗ - Heart symptoms & palpitations
I’ve been prescribed a low dose (10mg) of Propranolol and it helps lower my heart rate when it’s in the 90s while laying down.
In context ↗ - Muscle weakness
Weak, tired arms and hands.
In context ↗ - Neuropathy & tingling
Warm, clammy, tingly/pins and needles, pulsing, veiny, reddish/mottled hands and sometimes feet.
In context ↗ - Anxiety & low mood
depression, anxiety, and maybe some PTSD
In context ↗ - Flu-like symptoms
Bed-bound and felt like I had a never-ending flu from hell.
In context ↗ - Tinnitus
I currently have tinnitus too. Some days it’s louder than others.
In context ↗ - Temperature regulation
Feeling warm or chills.
In context ↗ - Vision problems
Blurry or slightly double vision. Right eye is usually worse.
In context ↗ - Hair loss
Losing nose and eyelash hairs.
In context ↗
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