In bed with long COVID, now nearly back to normal after antivirals and rest
- Condition
- Long COVID
- At worst
- Moderate (mostly housebound)
- Ill before improving or writing
- 2 years
- Last post
- Jul 2023
In their words
- Condition: Long COVID
I'm also a long hauler but this was on top of it and kind of made me focus on getting that under control.
In context ↗ - At worst: Moderate
I lost a lot of weight the whole time. Was always pale, in bed. Kind of gross.
In context ↗ - Now: Near normal
I have. For the most part. It took almost 2 years. ... POTS and clotting issues seem like things that I will have to deal with for the rest of my life.
In context ↗ - Began after: COVID
then got long covid on top of all that
Read from 17 of their posts and comments; links to the 15 this page draws on
Summary
They were a long COVID long hauler for almost two years, mostly pale and in bed, weak and losing weight. They credited a medicine cocktail including antivirals with helping them feel better, and later physical therapy, low-dose naltrexone, rest and time. By September 2022 they had recovered for the most part, though POTS and clotting issues remained. Vaccination caused weeks of weakness and brain fog; a doctor visit was paid out of pocket.
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What they tried
What they credit
Also tried
Their words about each treatment
- COVID vaccine · Worse
The second one for over a week I was very weak.
In context ↗ - HIV antivirals · Helped
This medicine cocktail that I've been given has made me feel better.
In context ↗ - Ring Worm Antivirals · Helped
Started HIV and Ring Worm Antivirals 3 days ago - no more aversion to beef
In context ↗ - ivermectin · Helped
I'm 2 weeks in and out is helping !
In context ↗ - albuterol · Not said
I took albuterol and the EMT on site kept me till my vitals stabilized
In context ↗ - statin · Not said
I got rhabdo but they think it's cause of covid not the statin.
In context ↗ - vitamins · Not said
I was struggling with not eating all my vitamins and I think that contributed to fatigue overall?
In context ↗ - physical therapy · Helped a lot
Walking and balancing exercises to slowly get your lungs and heart working and build stamina was out of all the meds and modalities I tried
In context ↗ - pacing mental and physical effort · Helped
using your brain and using your muscles fatigued my body equally ... it was a game changer
In context ↗ - diet change (food) · Helped
I was really able to see a difference with food during/after.
In context ↗ - low dose naltraxone · Helped a lot
One other thing that I think contributed, that my PCP suggested, was low dose naltraxone.
In context ↗ - breathing device (spirometer) · Not said
I also got a little breath thing that was supposed to help me breathe. That thing HURTTT but maybe it worked.
In context ↗ - rest and time · Helped
I don't know what else got me to where I am other than rest and time.
In context ↗
Approaches: Pacing · Physiotherapy and rehab
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 |
|---|---|---|---|
| onset | long COVID: weak, weight loss, in bed most of the time, working from home from bedWas always pale, in bed.In context ↗ | Moderate | |
| 2021-08-03 | felt better on a cocktail of HIV and antifungal medicines, two weeks inThis medicine cocktail that I've been given has made me feel better.In context ↗ | Moderate | Antiretrovirals (unspecified) |
| August 2021 | crashed after second COVID vaccine: in bed, major brain fog, off workwas in bed and really just slept the weekend and had to call out sick 2 daysIn context ↗ | Severe | |
| 2022-05-28 | doing a lot better after medicines, physical therapy and doctorsDr's and I'm doing a lot betterIn context ↗ | Mild | Physical therapy / physiotherapy |
| 2022-09-23 | recovered for the most part after almost two years, but POTS and clotting issues remainPOTS and clotting issues seem like things that I will have to deal with for the rest of my life.In context ↗ | Near normal | Physical therapy / physiotherapy |
Adverse events
- COVID vaccination as treatment“Due to the crappy reaction that I had a a long hauler to the vaccine.” In context ↗ Side effects
- COVID vaccination as treatment“The first one I literally slept over 24 hours straight and then had a fever and chills and flu symptoms for a couple days.” In context ↗ Side effects
- COVID vaccination as treatment“Immediately after taking it both times my throat closed up.” In context ↗ Allergic reaction / anaphylaxis
- COVID vaccination as treatment“The second one for over a week I was very weak.” In context ↗ Side effects
- COVID vaccination as treatment“Major brain fog. ... hard to breathe, heart rate would shoot up at the smallest of exercise.” In context ↗ Made symptoms worse
- COVID vaccination as treatment“heart rate would shoot up at the smallest of exercise” In context ↗ Heart rhythm problems
- COVID vaccination as treatment“After a week it got a little better but then I couldn't sleep” In context ↗ Insomnia from treatment
- Antiretrovirals (unspecified), Antifungals (unspecified)“I feel like COMPLETE TRASH - on a cocktail of meds.” In context ↗ Side effects
- “That thing HURTTT but maybe it worked.” In context ↗ Side effects
Symptoms mentioned
Their words about their symptoms
- POTS & dysautonomia
POTS and clotting issues seem like things that I will have to deal with for the rest of my life.
In context ↗ - Loss of smell or taste
I know at least one of the medicines helped get my taste back.
In context ↗ - Brain fog
Major brain fog.
In context ↗ - Breathlessness
hard to breathe
In context ↗ - Temperature regulation
had a fever and chills
In context ↗ - Flu-like symptoms
flu symptoms for a couple days
In context ↗ - Sleep problems
then I couldn't sleep
In context ↗ - Heart symptoms & palpitations
heart rate would shoot up at the smallest of exercise
In context ↗ - Muscle weakness
Truthfully I am weak
In context ↗ - Neuropathy & tingling
small fiber polyneuropathy
In context ↗ - Anxiety & low mood
My mental health journey is hard and separate from this
In context ↗
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