Long COVID
Severe → much betterIll 5.5 years before improving or writingNeeds ongoing treatment
Long COVID with dizziness and brain fog, now much better after guanfacine and naltrexone
- Condition
- Long COVID
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- 5.5 years
- Last post
- Feb 2026
In their words
- Condition: Long COVID
I’m 31, M, fit, and have been dealing with LH since mid-July 2020.
In context ↗ - At worst: Severe
30 and working literally from my back in bed
In context ↗ - Now: Much better
Still dealing with rare breakthrough brain fog due to viral infections (guanfacine has cleared up most of it) and dysautonomia/POTS. That's about it
In context ↗ - Began after: COVID
I was first infected in mid-July 2020.
In context ↗ - Says they never had: Headaches & migraine
minus headaches typically
Read from 137 of their posts and comments; links to the 44 this page draws on
- Aug 2021
- Sep 2023
- Feb 2026
- Oct 2020
- Oct 2020
- Feb 2021
- Mar 2022
- Oct 2020
- Nov 2020
- Dec 2020
- Sep 2022
- Sep 2022
- Sep 2022
- Jan 2026
- Jul 2021
- Jul 2021
- Aug 2021
- Dec 2022
- Sep 2021
- Jan 2022
- Sep 2021
- Jan 2022
- Sep 2022
- Feb 2022
- Mar 2022
- May 2022
- Sep 2023
- Feb 2022
- Nov 2022
- Sep 2023
- Sep 2023
- Feb 2021
- Feb 2021
- Jan 2022
- Mar 2022
- Sep 2023
- Mar 2022
- Aug 2025
- Jun 2023
- Nov 2021
- Apr 2021
- Nov 2020
- Sep 2023
- Dec 2021
Summary
Tulip 87927 fell ill with COVID in July 2020 and later worked lying down with near-daily dizziness and brain fog, plus numbness and breathlessness. A gluten-free elimination diet helped his pre-existing fatigue; salt and compression for POTS helped somewhat, low-dose naltrexone and NAC helped his remaining neurological issues, and guanfacine later almost eliminated brain fog and dizziness. By June 2023 he was about 75-85% of his former self. Repeat viral infections still worsen his symptoms, and tachycardia on standing persists.
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What they tried
What they credit
Also tried
laying prone· Helpedaspirin (baby aspirin and high-dose aspirin)· Helpedgatorade (salt) and compression stockings· Helpedgatorade (salt) and compression stockings· HelpedZyrtec· Helped · wore offprednisone / steroids· Helped · wore offsound machine· Helpedquercetin· Helpedketo diet· Helpedworking lying down with monitor above bed· Helpedalbuterol (asthma inhaler)· No changemeclizine· No changedramamine· No changebromelain· No changevitamin D· No changepacing· No changeivermectin· No change3 day fast· No changevitamin C· No changeweeks out of the house· No changeScopolamine patch· Worsebeta blockers (propranolol)· Worseworking out / weightlifting· Worsefluvoxamine (Luvox)· Worsecannabis· Worseclemastine fumarate· Not saidnattokinase (natto)· Not saidl-lysine· Not saidgarlic· Not saidintermittent fasting· Not saidaggressive autoimmune protocol· Not saidCOVID vaccination as treatment· Not said
Their words about each treatment
- albuterol (asthma inhaler) · No change
Albuterol never helped me (asthma inhaler).
In context ↗ - laying prone · Helped
Laying prone did. It opens up your lungs.
In context ↗ - meclizine · No change
The meclizine did not help me but it is easy to get.
In context ↗ - Scopolamine patch · Worse
None are effective in any way for me and the Scopolamine made things worse.
In context ↗ - dramamine · No change
tried dramamine, Scopolamine patch and meclizine. None are effective in any way for me
In context ↗ - aspirin (baby aspirin and high-dose aspirin) · Helped
I can get rid of about 30-70% of the brain fog depending on the day with about 3-4k mg of aspirin
In context ↗ - elimination diet (gluten-free, dairy-free) · Helped a lot
Confirmed something is up though with an elimination diet and now feel less fatigued than I have in years
In context ↗ - gatorade (salt) and compression stockings · Helped
I am drinking lots of gatorade (for salt) and also using compression stockings which seem to help about 15% when combined.
In context ↗ - clemastine fumarate · Not said
I am not taking high dosages though (1.34 mg at night).
In context ↗ - Zyrtec · Helped
antihistamines helped at the beginning when I had extremely high histamine levels but don’t do much now
In context ↗ - famotidine · Helped
I think famotidine helped the most honestly. It’s an H2 blocker.
In context ↗ - prednisone / steroids · Helped
Nothing from the treatment regiment worked except maybe the steroids and that was temporary.
In context ↗ - bromelain · No change
bromelain seemed to do nothing that I could tell. negative or positive.
In context ↗ - beta blockers (propranolol) · Worse
Beta blockers made my brain fog and lightheadedness about 5 times worse so I abandoned them.
In context ↗ - vitamin D · No change
taking vitamin d anyway but has not helped.
In context ↗ - working out / weightlifting · Worse
Working out a lot which seems to make it worse.
In context ↗ - pacing · No change
I’ve been pacing for 2.5 years and working out regularly since the beginning. Still not better
In context ↗ - ivermectin · No change
TL:DR: ivermectin didn’t help.
In context ↗ - fluvoxamine (Luvox) · Worse
fluvoxamine made me actively worse while I was on it
In context ↗ - 3 day fast · No change
Did not work for me. Did a 3 day fast
In context ↗ - cannabis · Worse
No, it doesn’t help me. Seems to make the brain fog/lightheadedness worse. Was worth trying.
In context ↗ - sound machine · Helped
I sleep with a sound machine and it helps quite a bit.
In context ↗ - quercetin · Helped
It helps with sinus issues but not much else. Maybe 5-10%?
In context ↗ - vitamin C · No change
same with vitamin c. did nothing.
In context ↗ - low histamine diet · Helped
and a low histamine diet helped substantially
In context ↗ - nattokinase (natto) · Not said
Also had natto added at one point.
In context ↗ - l-lysine · Not said
Also tried l-lysine. Didn’t seem to be as effective.
In context ↗ - garlic · Not said
Garlic also has some similar effects and I tried that as well.
In context ↗ - keto diet · Helped
So far I've had pretty dramatic improvement about 1.5 months in for brain fog and PEM.
In context ↗ - intermittent fasting · Not said
tried KETO and intermittent fasting
In context ↗ - hydroxychloroquine (Plaquenil) · Helped
I honestly think it was the drug but I had not had hardly any progress for 19 months and now I'm having strings of good days
In context ↗ - weeks out of the house · No change
I have spent weeks out of my house and the symptoms never wane.
In context ↗ - working lying down with monitor above bed · Helped
I also mounted my monitor above my bed so I can work laying down and that helps significantly with brain fog.
In context ↗ - LDN (low dose naltrexone) · Helped
I'm up to 4.5 MG now but when I first started, even at 1.5, I would get an opiate-like sensation of pain relief every day I took it.
In context ↗ - NAC · Helped
NAC cut brain fog for me probably 50% at its best and 20% at its worst.
In context ↗ - guanfacine · Helped a lot
Guanfacine has almost eliminated brain fog and dizziness.
In context ↗ - aggressive autoimmune protocol · Not said
I have just started a fairly agressive autoimmune protocol with my doctor
In context ↗ - time · Helped
I credit probably 65% of my recovery to meds and 35% to time.
In context ↗ - COVID vaccination as treatment · Not said
mild arm soreness, muscle twitching for like two days. nothing painful.
In context ↗
Approaches: H2 blockers · Diet · Other drugs and medicines · 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. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were | After |
|---|---|---|---|
| mid-July 2020 | COVID-19 infection; neurological symptoms beginI was first infected in mid-July 2020.In context ↗ | Moderate | |
| late 2020, about 5 months in | near-daily dizziness and brain fog; worked from bed30 and working literally from my back in bedIn context ↗ | Severe | |
| 7 months | fully gluten-free; fatigue much better7 months - finally figured out what had gluten in it and stopped accidentally gluten poisoning myself. fatigue got a lot better after. so much better.In context ↗ | Mild | |
| 12 months | numbness limited to left hand and foot; salt and compression for POTSstarted trying to consume extra salt and using compression stockings to help with POTS.In context ↗ | Mild | |
| December 2021 | relapsed a month after Omicron reinfectionI was doing better before I got Omicron in Dec, then I relapsed about a month later.In context ↗ | Moderate | |
| April 2022 | dramatic improvement in brain fog and PEM on ketoSo far I've had pretty dramatic improvement about 1.5 months in for brain fog and PEM.In context ↗ | Mild | |
| 2 years | first recovery plateau; began working more uprightstarting to work more uprightIn context ↗ | Mild | |
| 2.5 years | second plateau after LDN and NAC2.5 years - found LDN and NAC and hit plateau 2In context ↗ | Mild | Low-dose naltrexone |
| 3 years | guanfacine brought brain fog close to normal3 years - started Guanfacine, brain fog maybe 90%-95% of normalIn context ↗ | Mild | Guanfacine |
| September 2023 | reinfection worsened long COVID symptomsI got reinfected and had some worsening LH symptoms but overall doing ok.In context ↗ | Mild | |
| February 2026 | rare breakthrough brain fog after viral infections; POTS persistsStill dealing with rare breakthrough brain fog due to viral infections (guanfacine has cleared up most of it) and dysautonomia/POTS. That's about itIn context ↗ | Mild | Guanfacine |
Adverse events
- COVID vaccination as treatment“mild arm soreness, muscle twitching for like two days. nothing painful.” In context ↗ Side effects
- Scopolamine patch“None are effective in any way for me and the Scopolamine made things worse.” In context ↗ Made symptoms worse
- “But I had to stop taking them due to an ulcer. I was taking aspirin for my heart inflammation as recommended by my doctor.” In context ↗ Gut side effects
- Propranolol (Inderal)“Beta blockers made my brain fog and lightheadedness about 5 times worse so I abandoned them.” In context ↗ Made symptoms worse
- Fluvoxamine (Luvox)“fluvoxamine made me actively worse while I was on it” In context ↗ Made symptoms worse
- Fluvoxamine (Luvox)“fluvoxamine made me extremely fatigued to the point where I couldn’t even stay upright.” In context ↗ Side effects
- “I don’t know how willing I am to do this long term, especially since I started bruising easily” In context ↗ Other
Symptoms mentioned
Brain fogBreathlessnessGut problemsHair lossHeart symptoms & palpitationsMast cell (MCAS) & allergiesMuscle weaknessNeuropathy & tinglingPOTS & dysautonomiaPost-exertional malaiseTemperature regulationTinnitusVision problems
Their words about their symptoms
- Post-exertional malaise
even if it means bad PEM during DOMS period
In context ↗ - Brain fog
still get break through brain fog from time to time, almost always 3-4 weeks after a viral infection
In context ↗ - POTS & dysautonomia
Still have dysautonomia and POTS.
In context ↗ - Vision problems
eye pressure/pain issues and a ton of floaters
In context ↗ - Neuropathy & tingling
almost all of the nerve tingling is gone
In context ↗ - Heart symptoms & palpitations
Most of my other issues have gotten significantly better, specifically the POTS and the cardiac inflammation/chest tightness.
In context ↗ - Breathlessness
random shortness of breath
In context ↗ - Muscle weakness
lost 24 pounds, very hard to lift
In context ↗ - Hair loss
I am still losing hair (after 4 mo).
In context ↗ - Temperature regulation
I used to get hot flashes that lasted about 4 hours for about 6 months post-COVID.
In context ↗ - Mast cell (MCAS) & allergies
I couldn’t drink even decaf coffee because it elevated my histamine levels to the point where I was randomly getting hives.
In context ↗ - Gut problems
Also have no gastro issues anymore.
In context ↗ - Tinnitus
some days it’s very loud where I can’t hear what’s being said on TV and in calls
In context ↗
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