Long COVID with delirium and memory loss, some symptoms improved then returned

Condition: Long COVID
At worst: Moderate (mostly housebound)
Ill before improving or writing: 3.5 years
Last post: Sep 2026

In their words

Condition: Long COVIDI have severe, relatively pure neurocognitive LC, with deficits in attention, concentration, reading, writing In context ↗
At worst: ModerateI am unable to work or drive. In context ↗
Now: RelapsedThen I got COVID for the second time at month 10 of IVIG. This was again a mild case, over in a few days, but 8 weeks later my HRV plumetted, erasing all progress, and a lot of my GI dysautonomia returned. In context ↗
Says they never had: Mast cell (MCAS) & allergiesI do not take antihistamines and I do not have MCAS.
Says they never had: Post-exertional malaiseI do *not* have PEM and never have.

Read from 304 of their posts and comments; links to the 63 this page draws on

Summary

Starling 10501, a male with long COVID, developed delirium, DPDR and disabling memory and language deficits. He tried many drugs and supplements; NAC may have helped a little, aggressive hydration helped partially, and guanfacine and IVIG were considered but not yet tried. DPDR, gut, cardiac and twitching symptoms improved over roughly 8-18 months, but cognition remained disabling; a non-COVID febrile illness in 2024 temporarily improved symptoms before they returned.

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What they tried

What they credit

radical hydration with electrolyte water (LMNT/Saltt)· Helped N-acetylcysteine (NAC)· Helped · main IVIG· Helped · main light to moderate physical activity (brisk walks, jogging, gardening)· Helped sunlight exposure· Helped

Also tried

oral iron supplementation· Helpedmorning protein drink (Fairlife)· Helpedkeeping the bedroom cool· Helpedfamotidine (and earlier Zantac)· Helpedsmall frequent bland meals· Helpeda little coffee· Helpedguanfacine extended release· Helped melatonin· Helpedwedge / inclined pillow· Helpedcompression stockings and abdominal binder· No change LDN· No change high dose IV methylprednisolone· No change Paxlovid· No change low-histamine diet· No change H1 blockers (Benadryl, Claritin)· No change H1 blockers (Benadryl, Claritin)· No change Thorne B-Complex #12· No change riboflavin· No change valproic acid (Depakote)· No change propranolol· No change ubiquinol· No change L-carnitine· No changemigraine medications incl. injectable CGRP inhibitors· No changeNovavax booster· No changetryptophan and 5-HTP· No changevitamin D3· No change nicotine patches· No change CBT-I· No change Valtrex· Worse radical rest· Worse pre- and pro-biotics· Worse memantine (Namenda)· Worse GLP-1 drugs (unspecified)· Worse taurine· Much worse statin· Not said magnesium glycinate· Not said IV acyclovir· Not said omega 3s (triglyceride EPA/DHA, later Lysoveta)· Not said urolithin A (Mitopure)· Not said alpha-lipoic acid· Not said vitamin K2· Not said baby aspirin· Not said Tirzepatide (Mounjaro, Zepbound)· Not said

Their words about each treatment

radical hydration with electrolyte water (LMNT/Saltt) · HelpedLike you, I have taken to consuming 96 ounces of LMNT water daily, and it has had a noticeable favorable effect In context ↗
compression stockings and abdominal binder · No changeI've tried the compression stockings and abdominal binder, without success. In context ↗
LDN · No changeI tried LDN and it did not work for me In context ↗
oral iron supplementation · HelpedI supplemented iron and corrected this, and I believe it had a positive effect on some of my symptoms, particularly akathisia and muscle twitching. In context ↗
high dose IV methylprednisolone · No changeI did a trial of high dose IV glucocorticoids, and it did nothing. In context ↗
Paxlovid · No changeI did Pax for 15 days and it did not help me. In context ↗
statin · Not saidI was on a statin before COVID, with LDL below the 5th percentile. In context ↗
morning protein drink (Fairlife) · Helpeddown a 42gm protein drink ... and that seems to help somewhat. In context ↗
keeping the bedroom cool · Helpedkeeping the room cool with an open window helps noticeably In context ↗
low-histamine diet · No changeI tried all of the above, and none of it helped, for me. In context ↗
H1 blockers (Benadryl, Claritin) · No changeI poured on the antihistamines, both the H1 blockers (Benadryl, Claritin, etc) and the H2 blockers (Zantac, etc), and for me these did not do anything In context ↗
famotidine (and earlier Zantac) · HelpedFamotidine 20mg morning and night helped me. In context ↗
small frequent bland meals · HelpedI started eating like a baby -- many small meals, many times a day ... This helped partially, but only partially. In context ↗
a little coffee · HelpedA *little bit* of coffee, like 4 ounces. In context ↗
N-acetylcysteine (NAC) · HelpedThe only thing that I think has helped a little bit is N-acetylcysteine. In context ↗
Thorne B-Complex #12 · No changeI take Thorn B-Complex #12 once daily, and riboflavin 400mg daily. In context ↗
valproic acid (Depakote) · No changeI took it for 6 months. It benefited me not at all and I gained 50 pounds. In context ↗
propranolol · No changeI took propranolol for 5 months for LC. It did not help me, but also I found the side effects minimal. In context ↗
magnesium glycinate · Not saidI took 720mg (which is a lot, talk to your doctor) of magnesium glycinate for more than a year, and recently reduced to 360mg daily. In context ↗
ubiquinol · No changeNo effect of ubiquinol 300mg daily. In context ↗
taurine · Much worseI tried 1000mg of taurine (the amount in one Redbull) daily and it made my neurocognitive symptoms noticeably worse. In context ↗
L-carnitine · No changeI tried L-carnitine daily and it did nothing. In context ↗
migraine medications incl. injectable CGRP inhibitors · No changeI took the entire raft of migraine medications, including the high-end injectable CGRP inhibitors, and none of them did anything In context ↗
IVIG · HelpedHere at month 11 of IVIG, I have had improvement in some domains (language, processing speed) and not in others (memory and attention). In context ↗
Valtrex · WorseI've tried Valtrex 3 times, and each time it has worsened my neurocognitive symptoms, which is counterintuitive and super disappointing. In context ↗
IV acyclovir · Not saidI got IV acyclovir while they proved I did not have HSV or VZV encephalitis In context ↗
Novavax booster · No changeI had been hoping for improvement in LC but that didn't happen, so I'll settle the partial protection from reinfection. In context ↗
tryptophan and 5-HTP · No changeI have tried both tryptophan and 5-HTP, to no benefit. In context ↗
omega 3s (triglyceride EPA/DHA, later Lysoveta) · Not saidI was taking 3gm of O3s before getting LC, and cranked it to 5.4gm after getting LC, and so it is hard for me to say if O3s have had a benefit. In context ↗
vitamin D3 · No changeI have been taking Vitamin D3, 2000 IU daily, before, during, and after COVID and Long COVID. In context ↗
nicotine patches · No changeSome folks try nicotine patches with good results; I tried, it didn't help me. In context ↗
guanfacine extended release · HelpedI think guanfacine has benefitted me. In context ↗
radical rest · WorseI have tried radical resting, and it definitely makes my Long COVID worse. In context ↗
light to moderate physical activity (brisk walks, jogging, gardening) · HelpedLight to moderate physical exertion, like a brisk 2 mile walk or jog, significantly improves my neurocognitive symptoms. In context ↗
sunlight exposure · HelpedI find that consistent light physical activity on a daily basis definitely improves my symptoms, as does sunlight exposure and mental stimulation. In context ↗
melatonin · HelpedMelatonin helps but it probably isn't completely safe to take every night. In context ↗
urolithin A (Mitopure) · Not saidStill taking it. It's impossible to say if it has done anything. In context ↗
pre- and pro-biotics · WorseI've made several attempts at various pre- and pro-biotics each of which have been a disaster. In context ↗
CBT-I · No changeI've already undergone CBT-I to no effect In context ↗
alpha-lipoic acid · Not saidI continue to take a bunch of other things that I believe there is adequate science for (magnesium, omega 3s, alpha lipoic acid, vitamin D, B vitamins, ubiquinol, and urolithin A) In context ↗
vitamin K2 · Not saidmag, ubiquinol, B-vitamins, NAC, alpha-lipoic acid, vitamin D, vitamin K2, omega 3s, riboflavin In context ↗
baby aspirin · Not saida baby aspirin daily for my endothelium In context ↗
wedge / inclined pillow · HelpedTry a wedge pillow. It has helped mitigate my dysautonomia somewhat and improves the chaos, slightly. In context ↗
memantine (Namenda) · Worseit made my memory deficits immediately worse, and I stopped it after only a week In context ↗
Tirzepatide (Mounjaro, Zepbound) · Not saidThe nausea from the tirzepatide, which is expected, has made it harder to hydrate and nourish myself In context ↗
GLP-1 drugs (unspecified) · Worsemade my LC much, much worse ... It gave me a setback that I'm still recovering from 3 months later In context ↗

Approaches: POTS medication · Exercise and activity · 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 chart starts 11 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
2023	long COVID symptoms began about six weeks after a mild COVID infectionI recovered fully in two to three weeks. I then had the classic "healthy interval" of 6 weeks, before my LC symptoms began. In context ↗	Not stated
2023 (months 8-15)	rock bottom: hospitalised with delirium, unable to work or driveAt my worst I was so cognitively impaired that I was admitted to a hospital for delirium, the doctors thought I must be having temporal lobe seizures or something. In context ↗	Moderate
2024 (month 14)	DPDR, gut, cardiac, twitching and other symptoms began resolvingAll of these symptoms began resolving at 9 months and were pretty much fully resolved at 18 months. In context ↗	Moderate
January 2025	neurocognitive symptoms kept worsening while other symptoms resolvedBut my neurocognitive symptoms continue, continue to worsen, and are disabling. In context ↗	Moderate
November 2025	some improvement in language and processing speed on IVIGHere at month 11 of IVIG, I have had improvement in some domains (language, processing speed) and not in others (memory and attention). In context ↗	Moderate	IVIG / subcutaneous Ig
2026	second COVID infection at month 10 of IVIG; progress erased8 weeks later my HRV plumetted, erasing all progress, and a lot of my GI dysautonomia returned. In context ↗	Moderate
2026-09-24	still disabled by neurocognitive long COVID, on higher-dose IVIGMy overnight HRV runs 15 to 20 msec now. I was running a 6'55" mile before I got LC. In context ↗	Moderate

Adverse events

Iron infusion / ferritin repletion“I had a lot of trouble tolerating oral iron supplementation” In context ↗ Side effects
Iron infusion / ferritin repletion“the GI irritation from iron supplements worsens my neurocognitive symptoms” In context ↗ Made symptoms worse
Valtrex / valacyclovir“I've tried Valtrex 3 times, and each time it has worsened my neurocognitive symptoms” In context ↗ Made symptoms worse
Tirzepatide (Mounjaro, Zepbound)“The nausea from the tirzepatide, which is expected, has made it harder to hydrate and nourish myself” In context ↗ Side effects
GLP-1 drugs (unspecified)“made my LC much, much worse ... It gave me a setback that I'm still recovering from 3 months later” In context ↗ Made symptoms worse
Taurine“Taurine supplements made me much worse.” In context ↗ Made symptoms worse
Memantine (Namenda)“Unfortunately for me it made my memory deficits immediately worse, and I stopped it after only a week.” In context ↗ Made symptoms worse
Valproate (Depakote, Epilim)“I took Depakote for a year, which helped some, also made my stupid and I gained 50 pounds.” In context ↗ Side effects
IVIG / subcutaneous Ig“The headache, for me, is like nothing I've ever experienced ... I was demolished by it” In context ↗ Side effects
IVIG / subcutaneous Ig“I'm pretty sure I'm getting mild aseptic meningitis from it.” In context ↗ Side effects
IVIG / subcutaneous Ig“The symptom that persists between infusion cycles is the joint inflammation.” In context ↗ Side effects
Probiotics and fermented foods“I've made several attempts at various pre- and pro-biotics each of which have been a disaster.” In context ↗ Made symptoms worse
Radical rest“I have tried radical resting, and it definitely makes my Long COVID worse.” In context ↗ Made symptoms worse
Guanfacine“For me, side effects have included bothersome dry eyes, and not dry mouth which is the more commonly reported.” In context ↗ Side effects
“none of which worked, for me, and some of which made me worse” In context ↗ Made symptoms worse
Omega-3 and fish oil“some people find Omega 3s stimulating (I definitely do)” In context ↗ Side effects

Symptoms mentioned

Anxiety & low mood Brain fog Gut problems Headaches & migraine Heart symptoms & palpitations Light & noise sensitivity Pain & fibromyalgia Sleep problems Tinnitus Vision problems

Their words about their symptoms

Brain fogI still have disabling neurocognitive symptoms that are no better In context ↗
Heart symptoms & palpitationsthe bounding pulse and pounding heart went away, at about the 12 month mark for me In context ↗
Headaches & migraineI have had headache all day, every day, since this all started 20 months ago. In context ↗
Gut problemsThe gastroparesis, delayed gastric emptying, and constipation .... simply went away. In context ↗
Sleep problemsMy sleep has been terribly fragmented since developing neurocognitive LC In context ↗
Anxiety & low moodWaves of nameless fear and paranoia were also a massive problem for me, completely terrifying. In context ↗
Tinnitusthe tinnitus has not improved here at month 20 In context ↗
Vision problemsI have had permanent changes in my vision with LC, it was one of the first symptoms I noticed. In context ↗
Light & noise sensitivityI am certainly newly hyper-sensitive to loud noise In context ↗
Pain & fibromyalgiaCostochondritis had been a prominent part of my LC, I had it for 2 years intensely. In context ↗

Long COVID with delirium and memory loss, some symptoms improved then returned

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What they tried

What they credit

Also tried

Their path

Adverse events

Symptoms mentioned

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What they tried

What they credit

Also tried

Their path

Adverse events

Symptoms mentioned

Ask Miruvor AI

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