Long COVID
Severe → no benefit
Bedbound four years with long COVID, still cognitively impaired; no benefit from drugs
- Condition
- Long COVID
- At worst
- Severe (mostly bedbound)
- Ill for
- Not stated
- Last post
- Sep 2026
In their words
- Condition: Long COVID
Its been 6 years dealing with this.
In context ↗ - At worst: Severe
being bed bound for 4 years
In context ↗ - Now: No benefit
Only thing that I have seen as benefit in last 6 years is minorly from tirzepatide. ... Other supplements and medications I have tried only made me much worse
In context ↗
Read from 20 of their posts and comments; links to the 18 this page draws on
Summary
Mesa 40179 has had long COVID for about six years, with MCAS from the start and dysautonomia, and severe cognitive problems; they were bed bound for four years. Dozens of psychiatric drugs and supplements gave no benefit; creatine was the only thing that noticeably lifted energy and depression, though it faded and at times worsened crashes. By 2026 their working memory was still severely impaired; they had described deep depression in 2024.
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What they tried
Also tried
creatine· Helped a lot · wore offcalcium· Helpedantiepileptics (Keppra)· Helped · wore offmolnupiravir· Helped · wore offtirzepatide· Helpedcromolyn sodium· Helpedactive workout· HelpedNADH· No changeD-ribose· No changeacetyl l-carnitine· No changeLDN· No changeValtrex/Valcyclovir· No changemold protocol· No changediets· No changeLion's mane· Worseantidepressants· Worseketamine· Worseketotifen· Much worseQ10· Not saidPQQ· Not saidalpha lipoic acid· Not saidantipsychotics· Not saidtms· Not saidect· Not saidvns· Not saidR-ala· Not saidAlpha GPC· Not saidnr (nicotinamide riboside)· Not said
Their words about each treatment
- calcium · Helped
take calcium which slightly helped me
In context ↗ - creatine · Helped a lot
I have been taking between 12-18mg daily and it’s only thing that really works for my depression stemming from cfs.
In context ↗ - Q10 · Not said
The changes I go through might be stemming from this q10,pqq,ala blend as well since its newer to me
In context ↗ - PQQ · Not said
Pqq and Alpha lipoic acid have likewise effects as well
In context ↗ - NADH · No change
For me the only thing amongst all these supplments that makes noticeable difference is creatine.
In context ↗ - acetyl l-carnitine · No change
I use LDN (can only use up to 0.1-0.2mg otherwise I react), acetyl-l carnitine, creatine, q10 for CFS.
In context ↗ - Lion's mane · Worse
Lions mane raise nerve growth factor which eventually increases your histamine levels by mcas degranulation I cant use them too.
In context ↗ - LDN · No change
I have tried out ldn and that was no avail in that regard as well.
In context ↗ - antidepressants · Worse
always had to quit em due to huge intolerability
In context ↗ - ketamine · Worse
I cant use any antidepressant or any ketamine stuff even though I have tried cycle of treatments twice
In context ↗ - antiepileptics (Keppra) · Helped
I felt like it helped for a long time but not having epilepsy made me distance myself from it and it somehow made me worsen within time
In context ↗ - antipsychotics · Not said
anticonvulsants, antipsychotics, tms, ect, ketamine, vns
In context ↗ - Valtrex/Valcyclovir · No change
Personally, I havent seen any benefit out of it.
In context ↗ - molnupiravir · Helped
it helped me for first 2 days then not much. But did not offer longlasting benefit
In context ↗ - tirzepatide · Helped
Only thing that I have seen as benefit in last 6 years is minorly from tirzepatide.
In context ↗ - ketotifen · Much worse
even ketotifen makes me way worse
In context ↗ - cromolyn sodium · Helped
cromolyn sodium helps least others help like pieces of puzzle , each one help me to some extent
In context ↗ - mold protocol · No change
I remember trying mold protocol though it didnt work as it should have
In context ↗ - diets · No change
Did all those diets but didnt have a solid outcome.
In context ↗ - active workout · Helped
I just try to keep active workout recently it helps with my dissociation
In context ↗ - R-ala · Not said
Recently discovered R-ala and Alpha GPC for dysautonomia related SFN
In context ↗ - nr (nicotinamide riboside) · Not said
cant use any medication except ubiquinol and nr
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. The chart starts 12 months after onset: the story doesn’t say how ill they were before that. 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 begins with MCASIt all started with mcas and turned into permanent like cognitive dysfunction.In context ↗ | Not stated | |
| 2020-2022 | bed bound with severe brain fog, hallucinations and insomniabeing bed bound for 4 years actually devastated a lot of stuffIn context ↗ | Severe | |
| 2024-04 | slight improvement, talking and brain fog a bit betterIn last 2 years it has been tough but slightly better.In context ↗ | Severe | Creatine |
| 2026-09-01 | still severely cognitively impaired and deeply depressedWorking memory is like 0 as if not any single sign of intelligence left.In context ↗ | Severe |
Adverse events
- Creatine“I kinda took high doses without splitting it to the sessions in a day thats why I had some stomach discomfort at the first place.” In context ↗ Gut side effects
- Creatine“I didnt notice a lot of change but mild headache at the first few days, so be patientl at least 2 weeks” In context ↗ Side effects
- Creatine“there were times it was making me worse in terms of crash. Like fueling fuel but feeling worse while its getting depleted.” In context ↗ Made symptoms worse
- Antidepressants (unspecified)“I cant use any antidepressant or any ketamine stuff even though I have tried cycle of treatments twice with more than 50 psychiatric medications, even though I showed massive cognitive mcas reactions to all antidepressants and other treatments.” In context ↗ Made symptoms worse
- Antidepressants (unspecified)“started off antidepressants million times thinking they are key for recovery in my case somehow but always had to quit em due to huge intolerability” In context ↗ Side effects
- AHCC and medicinal mushrooms (reishi, shiitake, maitake)“Lions mane raise nerve growth factor which eventually increases your histamine levels by mcas degranulation I cant use them too.” In context ↗ Made symptoms worse
- Low-dose naltrexone“I use LDN (can only use up to 0.1-0.2mg otherwise I react)” In context ↗ Side effects
- Ketotifen (Zaditen)“I cannot use any mcas drugs, even ketotifen makes me way worse and only supplement I can tolerate is oral cromolyn sodium in that regard” In context ↗ Made symptoms worse
Symptoms mentioned
Anxiety & low moodBrain fogLight & noise sensitivityMast cell (MCAS) & allergiesPOTS & dysautonomiaSleep problems
Their words about their symptoms
- Brain fog
I have had massive level brain fog which was even impeding my talking skills
In context ↗ - Mast cell (MCAS) & allergies
I have idiopathic mcas
In context ↗ - POTS & dysautonomia
I have idiopathic mcas, dysautonomia
In context ↗ - Sleep problems
endless hypnagogic hallucinations, insomnia
In context ↗ - Anxiety & low mood
I am in deep depression
In context ↗ - Light & noise sensitivity
when I listen music with earphones I feel like I lose my inner voice even more
In context ↗