Long COVID
Severe → near normalIll 4 years before improving or writingNeeds ongoing treatment
Long COVID with falls and severe brain fog, mostly restored with masking and lithium
- Condition
- Long COVID
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- 4 years
- Last post
- Feb 2024
In their words
- Condition: Long COVID
My Long Covid is primarily the neurological type with movement disorder symptoms, cognitive and memory impairment.
In context ↗ - At worst: Severe
I couldn't walk due to my Long Covid causing weakness, ataxia and falling
In context ↗ - Now: Near normal
So long as I have zero, I have essentially normal function.
In context ↗ - Began after: COVID
until it seems Covid pushed my health over the edge, gave me two autoimmune diseases
Read from 37 of their posts and comments; links to the 20 this page draws on
Summary
A long COVID patient ill for four years from age 36 developed a degenerative neurological illness with movement disorder, falls, memory loss and severe brain fog. Strict N95 masking against reinfection, a biologic injection (Tremfya) and low-dose lithium restored most function, though symptoms return after exposures. After a December 2023 clinic exposure brought stroke-like symptoms, symptoms flared and they were mostly stuck in bed after a later exposure.
Ask Miruvor AI
What they tried
What they credit
N95 masks· Helped a lot · mainbeet juice· Helped a lotTremfya (biologic injectable)· Helped a lot · mainlow dose lithium (lithium orotate)· Helped a lotice baths· Helpedfasting all day, eating only dinner· HelpedL-arginine· HelpedCoenzyme Q10· HelpedVitamin D· HelpedIron· HelpedFolic Acid· HelpedVitamin B-12· Helpeddaily zone 2 cardio· Helpedraw garlic cloves· Helpedresting very seriously at home in bed· Helped
Also tried
beta blockers (propranolol)· Helped a lotmusic and dance lessons and Duolingo· Helped a lotZyn nicotine pouches· Helped a lotavoiding PM 2.5 air pollution· HelpedKorean red ginseng· Helpedavoiding fried foods and sweets· Helpedpork liver pate or Pho with beef tendon· Helpedelectrolyte drink (Scratch)· HelpedManta sleep mask and no backlit devices in the bedroom· HelpedInositol· Helpedlamotrigine· Worsephysical therapy (calf raises)· Much worseHEPA filter, Xlear nasal spray and nose-only mask at the dentist· Not said
Their words about each treatment
- ice baths · Helped
I started with ice baths and fasting all day, eating only dinner, mostly vegetables. ... It definitely helped somewhat, but was also very strenuous.
In context ↗ - fasting all day, eating only dinner · Helped
fasting all day, eating only dinner, mostly vegetables. My neurologist asked me to eat more though, and it turned into winter, so I stopped.
In context ↗ - N95 masks · Helped a lot
Then I started wearing an N95 to avoid reinfection. That has consistently helped during my whole illness. Symptoms decrease and some disappear entirely.
In context ↗ - beta blockers (propranolol) · Helped a lot
I took beta blockers the in second year of my illness, when I had terrible anxiety ... They worked immediately and very well.
In context ↗ - beet juice · Helped a lot
In the third year I read about endothelial damage causing neurological symptoms and started drinking beet juice every day. I had immediate improvement, with better circulation to my face and less brain fog.
In context ↗ - L-arginine · Helped
Later I added L-arginine and Coenzyme Q10 because I read here that those also improve endothelial function ... They also work well, maybe better even.
In context ↗ - Coenzyme Q10 · Helped
Later I added L-arginine and Coenzyme Q10 ... They also work well, maybe better even.
In context ↗ - Tremfya (biologic injectable) · Helped a lot
so I started taking that and it wiped out 95% my neurological symptoms after the second dose
In context ↗ - music and dance lessons and Duolingo · Helped a lot
I started taking music and dance lessons and doing Duolingo everyday. ... after a couple months that went away and I recovered mentally and my coordination.
In context ↗ - low dose lithium (lithium orotate) · Helped a lot
Then I started taking low dose over the counter lithium supplements, (which is long known to decrease neuroinflammation), and that helped also.
In context ↗ - lamotrigine · Worse
took a mood stabilizer that was recommended and that I'd never tried before (lamotrigine) for several months. ... The memory loss began (very sporadically at first) a few months after beginning that medication.
In context ↗ - Vitamin D · Helped
Vitamin D (It was very low like many long haulers)
In context ↗ - Iron · Helped
Iron (I had anemia for a while)
In context ↗ - Folic Acid · Helped
Folic Acid (The anemia was probably due to the DMARD pills
In context ↗ - Vitamin B-12 · Helped
Vitamin B-12 (I've been deficient for a long time
In context ↗ - daily zone 2 cardio · Helped
Avoiding strenuous exercise (make sure you never push through pain!) and doing daily zone 2 cardio
In context ↗ - avoiding PM 2.5 air pollution · Helped
Avoiding PM 2.5 air pollution levels of over 10 micrograms per cubic meter of air
In context ↗ - physical therapy (calf raises) · Much worse
I did a little physical therapy and was encouraged to push myself. ... For two weeks afterward I had muscle soreness and pain that I'd never experienced before
In context ↗ - HEPA filter, Xlear nasal spray and nose-only mask at the dentist · Not said
I have literally brought a small HEPA filter and ran it right next to the chair, did Xlear nasal spray and a nose-only mask at the dentist. All those things are 100% worth it.
In context ↗ - Korean red ginseng · Helped
Korean red ginseng helps.
In context ↗ - avoiding fried foods and sweets · Helped
I try to avoid fried things now and boost my endothelial health with beet juice, Coenzyme Q10, L-arginine, etc. It seemed to work very well as the pain went away along with the digestive problems.
In context ↗ - Zyn nicotine pouches · Helped a lot
I've tried them also. They work fine. Got rid of my brain fog very quick
In context ↗ - pork liver pate or Pho with beef tendon · Helped
The main things that fixes my TMJ disorder is eating a thin spread of pork liver pate daily on toast for about six weeks
In context ↗ - raw garlic cloves · Helped
Yes, I did this for a month as part of my recovery from an exposure at the doctor's office that led to TIA-like symptoms. I believe it speeded my recovery
In context ↗ - electrolyte drink (Scratch) · Helped
Also, electrolyte drink has proven somewhat helpful. I use Scratch.
In context ↗ - resting very seriously at home in bed · Helped
I rested very seriously at home in bed ... and after 1.5 months have returned to my baseline from before.
In context ↗ - Manta sleep mask and no backlit devices in the bedroom · Helped
Putting all backlit devices in another room for charging before going to bed helps. ... Wearing a Manta sleep mask to block out all ambient light helps.
In context ↗ - Inositol · Helped
I'm trying it also and it seems harmless to beneficial.
In context ↗
Approaches: Alternative therapies · Diet · Exercise and activity · Biologics & antibodies · Radical rest · 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 first step with a time is 3.8 years after onset: the story doesn’t say how ill they were before that. The dashed part: the story doesn’t say when. 1 step says too little to place on the scale and is 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 with degenerative neurological symptomsMy illness began when I was 36. It has been four years.In context ↗ | Not stated | |
| — | could not walk; ataxia, falling and collapsingWhen I couldn't walk due to my Long Covid causing weakness, ataxia and falling, we had to use wheelchairs when we would visit museumsIn context ↗ | Severe | |
| — | movement disorder stopped progressing and function returnedLuckily, my movement disorder stopped progressing and healed and I regained function after I started masking strictly with N95 or better masks.In context ↗ | Moderate | |
| — | neurological symptoms 90% better after biologic injectionsand my neurological symptoms got 90% better after the second shotIn context ↗ | Near normal | Guselkumab (Tremfya) |
| December 2023 | stroke-like symptoms after an exposure at the doctor's office; mostly stuck in bedI had an exposure a couple weeks ago, my symptoms flared up and I'm mostly stuck in bed sinceIn context ↗ | Severe | |
| 2024-02-10 | back to baseline; near-normal function while avoiding exposureSo long as I'm never exposed or reinfected, I am effectively recovered, able to function in daily life, work, socialize and enjoy recreation.In context ↗ | Near normal |
Adverse events
- Lamotrigine (Lamictal)“took a mood stabilizer that was recommended and that I'd never tried before (lamotrigine) for several months. The memory loss began (very sporadically at first) a few months after beginning that medication.” In context ↗ Side effects
- Physical therapy / physiotherapy“I did a little physical therapy and was encouraged to push myself. For two weeks afterward I had muscle soreness and pain that I'd never experienced before along with feeling generally unwell and exhausted.” In context ↗ Made symptoms worse
- “I slacked off for a while and ended up getting chronic dry mouth after having to have fillings replaced and adjusted and did a small oral surgery” In context ↗ Other
- “The anemia was probably due to the DMARD pills for my post-Covid rheumatoid arthritis, as it's a known side effect the rheumatologist didn't bother to tell me about” In context ↗ Blood count problems
Symptoms mentioned
Anxiety & low moodBrain fogBreathlessnessGut problemsHeadaches & migraineHeart symptoms & palpitationsMuscle weaknessNeuropathy & tinglingPOTS & dysautonomiaPain & fibromyalgiaPost-exertional malaiseSleep problemsTemperature regulation
Their words about their symptoms
- Brain fog
After two shots, the brain fog disappeared
In context ↗ - POTS & dysautonomia
The dysautonomia seems to be leading to heat/humidity intolerance though
In context ↗ - Sleep problems
terrible anxiety, especially at night with insomnia and broken sleep
In context ↗ - Pain & fibromyalgia
I often have bloating and constipation along with joint pain starting two days after exposure events
In context ↗ - Gut problems
I experience digestive problems if I eat fried foods specifically.
In context ↗ - Headaches & migraine
At first it was actually strenuous, and I would get headaches and feel exhausted after a few minutes
In context ↗ - Muscle weakness
When I couldn't walk due to my Long Covid causing weakness, ataxia and falling
In context ↗ - Neuropathy & tingling
numb hands when sleeping at night
In context ↗ - Anxiety & low mood
when I had terrible anxiety, especially at night with insomnia and broken sleep, and exaggerated startle response
In context ↗ - Heart symptoms & palpitations
symptoms did affect my breathing on three occasions and heart rhythm numerous times
In context ↗ - Temperature regulation
last summer I had low BP and elevated body temp even though it was only 85 degrees and 65% humidity
In context ↗ - Post-exertional malaise
I've only had it once, when I did a little physical therapy and was encouraged to push myself.
In context ↗
Ask Miruvor AI
Similar stories
-
Bedbound with long COVID for eight months, now much better after diet and rest
Glacier 23338 got long COVID after a 2022 infection, was bedbound for eight months and went into cardiogenic shock in December 2023; defibrillation and a change of environment left them about 78% healed. A COVID reinfection in August 2024 brought a worse…
-
Long COVID fatigue, brain fog and dysautonomia, much better after supplements and sauna
An Australian woman developed long COVID after a December 2022 reinfection, with fatigue, PEM, brain fog, dysautonomia, insomnia and body aches. She took two months off work and built a large supplement stack with regular sauna and cold exposure; by six to…
-
In bed with long COVID nearly 12 months, now back to normal after diet and supplements
After COVID, this long-hauler was in bed nearly 12 months and had four confirmed infections. At 14 months they changed their diet, took large supplement stacks, fasted, walked and exercised progressively, took ice baths and used sauna. They felt better by…
-
Long COVID with PEM after overdoing it, much better after pacing and time
He was a fit gym-goer in London who never recovered from a fifth COVID infection in March 2024. After about 18 months he improved to about 80-90% by walking daily, cutting sugar and alcohol, and taking mirtazapine, electrolytes, CBD oil and using red light…