Long COVID
Severe → near normalIll 4 years before improving or writingNeeds ongoing treatment
Housebound with long COVID, now nearly normal after exposure avoidance and lithium
- Condition
- Long COVID
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- 4 years
- Last post
- May 2024
In their words
- Condition: Long COVID
four years experience as a long hauler with neurological symptoms
In context ↗ - At worst: Severe
I did get it and used it as part of my recovery after being bedridden for months
In context ↗ - Now: Near normal
I'm now over 90% recovered, have returned to working ... I have little to no PEM, some POTS that appears very briefly and sporadically
- Began after: COVID
Before I got Long Covid I was doing calisthenics and martial arts, powerlifting, etc.
Read from 32 of their posts and comments; links to the 18 this page draws on
Summary
Pebble 81183 developed long COVID in 2020 and was largely housebound and often in bed for months with falls, vertigo and severe memory and attention deficits; a reinfection brought two autoimmune diseases, including psoriasis. Strict exposure avoidance, daily beet juice, low-dose lithium and a year of the biologic Tremfya, stopped after herpes spread, left them over 90% recovered, back at work and weight training, with memory problems remaining.
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What they tried
What they credit
Also tried
strict avoidance of airborne exposure (N95/N99 masks, HEPA purifiers, ventilation, humidifiers, nasal sprays)· Helped a lotdaily box breathing· HelpedTai Chi / Yoga· Helpedcognitive exercise (trying to learn new things)· Helpedstaying socially engaged· HelpedCompex EMS device· HelpedDialectical Behavior Therapy (DBT)· HelpedAttention Training Technique of Metacognitive Therapy· HelpedKorean red ginseng extract· Helpedmovement- and music-based physical/cognitive therapy· HelpedSSRI (Prozac)· Worseplasma donation· WorseCBT· WorseValacyclovir· Not saidNovavax / mRNA COVID vaccines· Not saidelectrolytes· Not saidraw garlic· Not saidvitamin B-12 and folic acid· Not saidvitamin B-12 and folic acid· Not said
Their words about each treatment
- SSRI (Prozac) · Worse
The side effect of Long QT syndrome appeared.
In context ↗ - strict avoidance of airborne exposure (N95/N99 masks, HEPA purifiers, ventilation, humidifiers, nasal sprays) · Helped a lot
Strict avoidance of exposure to inflammatory airborne substances
In context ↗ - beet juice · Helped a lot
I drink one glass of beet juice daily
In context ↗ - L-arginine · Helped
taking supplements such as L-arginine, coenzyme q10, Vitamin D, fish oil, etc.
In context ↗ - coenzyme Q10 · Helped
taking a supplement of Coenzyme Q10 daily is also helpful to the endothelium
In context ↗ - Vitamin D · Helped
take fish oil, coenzyme Q10, Vitamin D, etc. and have seen very good results with no more brain fog
In context ↗ - lithium orotate · Helped
I get good results with 5 mg a day of lithium orotate
In context ↗ - Tremfya · Helped a lot
I was treated with Tremfya for one year and it 90% wiped out the symptom of brain fog, memory and cognitive impairment after the first two injections.
In context ↗ - Valacyclovir · Not said
had to be treated with Valacyclovir
In context ↗ - daily box breathing · Helped
I have seen some improvement of loss of internal sensing ... with daily box breathing practice.
In context ↗ - Tai Chi / Yoga · Helped
A form of moving meditation, such as Tai Chi or Yoga generally gets better results for that type of person in my experience. That is what I myself do.
In context ↗ - cognitive exercise (trying to learn new things) · Helped
Cognitive exercise (trying to learn new things)
In context ↗ - light cardiovascular exercise (walking) · Helped
light endurance-based mostly cardiovascular exercise (walking a lot)
In context ↗ - staying socially engaged · Helped
staying socially engaged in person, on the phone and online
In context ↗ - Compex EMS device · Helped
I did get it and used it as part of my recovery after being bedridden for months.
In context ↗ - plasma donation · Worse
felt normal for two days after I tried donating plasma, then it came back worse than before for a couple weeks
In context ↗ - Novavax / mRNA COVID vaccines · Not said
I decided to get Novavax at my local CVS and try to boost every 5 months.
In context ↗ - CBT · Worse
Cognitive Behavioral Therapy (CBT) is fairly useless or even counterproductive for these types of problems in my experience.
In context ↗ - Dialectical Behavior Therapy (DBT) · Helped
Dialectical Behavior Therapy (DBT) is also very effective in my experience
In context ↗ - Attention Training Technique of Metacognitive Therapy · Helped
The Attention Training Technique of Metacognitive Therapy is also helpful
In context ↗ - electrolytes · Not said
I also drink electrolytes
In context ↗ - raw garlic · Not said
eat 2-4 cloves of raw garlic
In context ↗ - Korean red ginseng extract · Helped
add Korean red ginseng extract for a couple months on, then the same time off. It helps with attention deficit, in my case at least.
In context ↗ - vitamin B-12 and folic acid · Not said
take vitamin B-12, Vitamin D and folic acid every day
In context ↗ - movement- and music-based physical/cognitive therapy · Helped
Physical and cognitive therapy that is movement and music based emphasizing deep breathing, light exercise, coordination and vocalization. I've seen good results with it myself
In context ↗
Approaches: Exercise and activity · Biologics & antibodies · Supplements
Their path
How ill they were on the ME/CFS severity scale, estimated from what they describe at each point, in the order they describe; they don’t give enough times to place each step. Hover or tap a point. 5 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 |
|---|---|---|---|
| 2020 | long COVID began after COVID infectionI haven't done any lifting since this illness first appeared four years ago.In context ↗ | Not stated | |
| first year of illness | bedridden for months; seizure-like fits, falls, vertigo, could not driveI couldn't drive and was afraid to leave the house or even my bed to a large degree for several months.In context ↗ | Severe | |
| — | reinfection brought rheumatoid arthritis and psoriasisAfter a reinfection I developed rheumatoid arthritis and psoriasis.In context ↗ | Not stated | |
| 2023 | brain fog, memory and cognitive impairment largely cleared after two injectionsit 90% wiped out the symptom of brain fog, memory and cognitive impairment after the first two injectionsIn context ↗ | Not stated | Guselkumab (Tremfya) |
| 2023-2024 | strict avoidance of airborne exposure cut movement and neurological symptomsThis has reduced incidence of my more severe movement and neurological symptoms by more than 90%.In context ↗ | Not stated | |
| 2024 | beet juice and nitric-oxide foods; palpitations and brain fog goneI drink one glass of beet juice daily, eat lots of arugula salads, pumpkin seeds and oil, etc. and no longer have palpitations or brain fog.In context ↗ | Not stated | Nitric-oxide boosters (beetroot, arginine, citrulline) |
| 2024-05 | back at work, travelling, teaching and weight trainingI'm now over 90% recovered, have returned to workingIn context ↗ | Near normal |
Adverse events
- Fluoxetine (Prozac)“The side effect of Long QT syndrome appeared.” In context ↗ Heart rhythm problems
- Guselkumab (Tremfya)“it strongly suppressed my immune system and I eventually began to get spreading herpes type one infections” In context ↗ Side effects
- Lithium orotate (low-dose)“Initially I took 10 mg and after a few days started to have something similar happen.” In context ↗ Side effects
- Plasma donation“then it came back worse than before for a couple weeks” In context ↗ Made symptoms worse
Symptoms mentioned
Anxiety & low moodBrain fogHeadaches & migraineHeart symptoms & palpitationsMuscle weaknessNeuropathy & tinglingPOTS & dysautonomiaPain & fibromyalgiaTemperature regulationTinnitusVision problems
Their words about their symptoms
- Brain fog
I was able to fully recover from brain fog symptoms.
In context ↗ - POTS & dysautonomia
some POTS that appears very briefly and sporadically
In context ↗ - Headaches & migraine
burning headaches
In context ↗ - Vision problems
mild cognitive and memory impairment, neurogenic bladder, convergence insufficiency, etc.
In context ↗ - Tinnitus
I had tinnitus and slight hearing loss in one ear
In context ↗ - Neuropathy & tingling
my nose will feel odd, cold and tingly
In context ↗ - Muscle weakness
intermittent one-sided weakness
In context ↗ - Anxiety & low mood
it gives me so much anxiety that I can hardly cope at all
In context ↗ - Pain & fibromyalgia
I've found that if I eat it daily on toast, it alleviates joint pain dramatically
In context ↗ - Heart symptoms & palpitations
no longer have palpitations or brain fog
In context ↗ - Temperature regulation
since last summer, heat intolerance
In context ↗
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