Long COVID
Severe → near normalIll 3.5 years before improving or writingNeeds ongoing treatment
Bedbound with long COVID at worst, now nearly back to normal after time and diet
- Condition
- Long COVID
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- 3.5 years
- Last post
- Aug 2026
In their words
- Condition: Long COVID
I don’t believe I had true CFS (going by its current medical definition).
In context ↗ - At worst: Severe
At my worst I could barely leave my bed and mind was totally blank
In context ↗ - Now: Near normal
I’m basically almost back to my regular self and living a normal life now.
In context ↗ - Began after: COVID
when I lost it 2.5 years ago it was a complete loss of both smell and taste
- Says they never had: Heart symptoms & palpitations
I didn’t get the pounding heart feeling though.
- Says they never had: Mast cell (MCAS) & allergies
I don’t have mast cell/histamine issues
- Says they never had: Post-exertional malaise
I didn’t really have PEM
Read from 127 of their posts and comments; links to the 39 this page draws on
- Dec 2023
- Dec 2023
- Oct 2024
- Apr 2022
- Mar 2023
- Dec 2023
- May 2023
- Sep 2023
- Oct 2023
- Dec 2024
- Oct 2023
- Oct 2023
- Jan 2024
- Oct 2023
- Oct 2023
- Jun 2024
- Oct 2023
- Jan 2024
- Sep 2023
- Nov 2023
- May 2022
- Jun 2024
- Dec 2023
- Apr 2024
- Apr 2024
- Aug 2024
- Aug 2024
- Nov 2023
- Feb 2024
- Dec 2023
- Aug 2026
- Oct 2023
- Apr 2024
- Apr 2024
- Apr 2022
- Mar 2024
- Dec 2023
- Mar 2023
- Dec 2024
Summary
Ill from mid-2021, this Reddit user was largely bedbound at worst with severe brain fog, head pressure and constant fight-or-flight feelings. They credited time plus an anti-inflammatory/keto diet, anti-inflammatory supplements, exercise, meditation, breathwork and cold showers, and by late 2023 rated some days about 70–90 per cent. By 2024 they were working, socialising and exercising again, though something still felt missing.
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What they tried
What they credit
keto· Helped a lotanti-inflammatory diet· Helped a lot · mainEMDR· Helped a lotbrain retraining· Helped a lot · mainFluvoxamine (and an earlier SSRI)· HelpedAcetyl L Carnitine· HelpedNordic Naturals Ultimate Omega (fish oil)· HelpedMagnesium· HelpedCoq10· HelpedR-Alpha Lipoic Acid· HelpedGarlic extract· HelpedBeetroot powder and l-citrulline· Helpedextended fasts (3 days)· Helpedcold showers· Helpedmeditation and Wim Hof breathing· Helpedexercise/weightlifting· HelpedDaily journaling· Helped
Also tried
Choline supplements (alpha gpc, cdp choline, huperzine a, phosphatidylcholine)· Helped a lotSPM Active (Metagenics)· HelpedBroccoli· HelpedCognitive exercises/brain puzzles· HelpedHomemade chia pudding· HelpedLicorice root· HelpedAtivan· HelpedAlcohol· HelpedCaffeine / coffee· Helpedantibiotic (amoxicillin)· Helpedtherapy· HelpedCurable app· HelpedLow potency multivitamin· No changeb complex· No changetumeric· No changenicotine patch (7mg)· Worseoral steroid· Not saidEndocalyx Pro· Not said
Their words about each treatment
- Fluvoxamine (and an earlier SSRI) · Helped
The only think that helped significantly with my cognitive and some physical symptoms was the Fluvoxamine
In context ↗ - Choline supplements (alpha gpc, cdp choline, huperzine a, phosphatidylcholine) · Helped a lot
pro-cholinergic supplements have helped me immensely, as in completely eliminated my brainfog, improved my adhd and greatly improved my memory
In context ↗ - Acetyl L Carnitine · Helped
antiinflammatory supplements (ones that help Neuroinflammation in particular such as: acetyl l carnitine, alpha lipoic acid
In context ↗ - Nordic Naturals Ultimate Omega (fish oil) · Helped
High strength fish oil has helped me greatly for reducing inflammation.
In context ↗ - Magnesium · Helped
Magnesium for sure. I use Threonate.
In context ↗ - Coq10 · Helped
Personally I take a low potency multivitamin, Coq10, Acetyl L Carnitine, SPM Active
In context ↗ - SPM Active (Metagenics) · Helped
SPM Active from Metagenics (I still take, it's expensive, but it's a powerful antiinflammatory supplement)
In context ↗ - R-Alpha Lipoic Acid · Helped
Alpha Lipoic acid
In context ↗ - Low potency multivitamin · No change
some basic vitamins and other supplements (multi, fish oil, magnesium, b complex, and tumeric) but nothing really helped or made a difference
In context ↗ - b complex · No change
b complex, and tumeric) but nothing really helped
In context ↗ - Garlic extract · Helped
supplements to help circulation such as beetroot powder, garlic extract, and l citruline
In context ↗ - Beetroot powder and l-citrulline · Helped
Once I added l citrulline (was taking it to help circulation) but this also helped further
In context ↗ - Broccoli · Helped
I noticed the day after I eat large amounts of broccoli I feel noticeably better/closer to normal.
In context ↗ - keto · Helped a lot
I also did keto for a bit this past summer and I think it was what really kickstarted my healing.
In context ↗ - anti-inflammatory diet · Helped a lot
anti inflammatory diet with emphasis on whole foods, nothing processed ... This has made an immense difference.
In context ↗ - nicotine patch (7mg) · Worse
At first I noticed it helped my cognitive symptoms and also helped my constipation. However after doing the patch for a couple of weeks, towards the end, I reacted badly
In context ↗ - extended fasts (3 days) · Helped
Each time I did an extended fast, it felt like it increased my baseline after.
In context ↗ - cold showers · Helped
I've started mediation, wim hof breathing, and cold showers and they seem to be helping a little bit.
In context ↗ - meditation and Wim Hof breathing · Helped
Also meditation and cold showers help me too because I believe both engage the parasympathetic nervous system.
In context ↗ - exercise/weightlifting · Helped
I've incorporated exercise/weightlifting once I could tolerate it
In context ↗ - Cognitive exercises/brain puzzles · Helped
cognitive exercises/brain puzzles
In context ↗ - Homemade chia pudding · Helped
the only thing that ended up helping was homemade chia pudding (keeps me regular and I no longer bloat)
In context ↗ - Licorice root · Helped
I noticed things that help this feeling for me are things that work on gaba/glutamate balance ... Licorice root
In context ↗ - Ativan · Helped
when I previously took Ativan a few times I noticed it also helped all my other neuro symptoms
In context ↗ - Alcohol · Helped
Alcohol has also helped me too
In context ↗ - Caffeine / coffee · Helped
caffeine doesn't really seem to bother me, in fact I think it helps some of my other symptoms like brain fog
In context ↗ - antibiotic (amoxicillin) · Helped
I myself also felt a bit of relief
In context ↗ - oral steroid · Not said
I've recently had to take an antibiotic and oral steroid for an unrelated medical issue and tolerated them just fine now though
In context ↗ - therapy · Helped
in therapy to help process everything as well and it’s definitely helping
In context ↗ - Curable app · Helped
I’ve been using the “Curable” app in addition to therapy ... it has a trauma processing component to it which I’ve found very helpful
In context ↗ - EMDR · Helped a lot
I definitely noticed a huge upswing when I started EMDR and brain retraining
In context ↗ - brain retraining · Helped a lot
I too also saw great improvement in symptoms with EMDR and brain retraining
In context ↗ - Endocalyx Pro · Not said
I also took this other one called endocalyx pro which is supposed to be good for your circulation
In context ↗ - Daily journaling · Helped
I also did fasting, cold showers, meditation, getting out in nature, and daily journaling
In context ↗
Approaches: CBT & mindset · SSRIs · Alternative therapies · Amino acids and carnitine · Brain retraining · Diet · Exercise and activity · Mind-body practices · Supplements · Trauma & somatic work
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. 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 |
|---|---|---|---|
| 2021 | long COVID onset; in bed most days with blank mindMany days I was bedbound in the beginning.In context ↗ | Severe | |
| summer 2023 | keto then anti-inflammatory diet; healing kickstartedI also did keto for a bit this past summer and I think it was what really kickstarted my healing.In context ↗ | Moderate | |
| 2023-10-11 | crashed on the nicotine patchafter doing the patch for a couple of weeks, towards the end, I reacted badly and it brought back some of the cognitive symptoms and head pressure.In context ↗ | Not stated | Nicotine patches |
| 2023-12-23 | much better overall, 70-90% on different daysSome days I feel 70% and other days I feel 90%.In context ↗ | Mild | |
| 2024-08-25 | big upswing after starting EMDR and brain retrainingI definitely noticed a huge upswing when I started EMDR and brain retraining.In context ↗ | Mild | Trauma work (EFT, EMDR, TRE) |
| 2024-12-04 | about 85% back after 3 years 5 monthsIt took me about 3 years and 5 months to get where I’m at now which is about 85%.In context ↗ | Near normal | |
| 2026-08-24 | skin the last thing to improve; still fluctuatesMy skin was actually one of the last things to improve, and it took about four years.In context ↗ | Near normal |
Adverse events
- Nicotine patches“after doing the patch for a couple of weeks, towards the end, I reacted badly and it brought back some of the cognitive symptoms and head pressure.” In context ↗ Made symptoms worse
- Fluvoxamine (Luvox)“I tried to take an SSRI I previously took before at 1/6 the dose I used to take and had horrid side effects.” In context ↗ Side effects
- Fluvoxamine (Luvox)“I used to take an SSRI and would get them when I forgot to take it or missed a dose so I’m pretty familiar with what they feel like.” In context ↗ Withdrawal problems
- Magnesium“I use the sucrosomial form as glycinate and threonate made me feel weird” In context ↗ Side effects
- Keto and low-carb diets“I did do Keto for a bit and I do believe it ramped up healing even further but then I was losing too much weight” In context ↗ Side effects
Symptoms mentioned
Brain fogBreathlessnessGut problemsHair lossHeadaches & migraineLoss of smell or tasteNeuropathy & tinglingPOTS & dysautonomiaPain & fibromyalgiaSleep problems
Their words about their symptoms
- Brain fog
Horrible brain fog too where I could barely form coherent thoughts and sentences
In context ↗ - Headaches & migraine
I had horrible head pressure/brain on fire feeling.
In context ↗ - Gut problems
I once didnt have a bowel movement for 2 weeks when my symptoms first popped up
In context ↗ - Sleep problems
I’ve had pretty inconsistent sleep, never feel refreshed
In context ↗ - Pain & fibromyalgia
I had joint pain primarily in my elbows and hands/knuckles
In context ↗ - Loss of smell or taste
it was a complete loss of both smell and taste and it has slowly come back over time
In context ↗ - POTS & dysautonomia
I probably had lack of sweating for about a year and half.
In context ↗ - Hair loss
hair loss appears to be accelerated
In context ↗ - Breathlessness
at one point my autonomic breathing would just pause sometimes
In context ↗ - Neuropathy & tingling
I had what was likely burning mouth syndrome for a while, probably over a year
In context ↗
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