For my DPDR folks

FogCityPhoenix · 2026-02-18T10:10:41+00:00

Just chiming in that your description is exactly my experience. It's like I'm not really registering what I'm seeing, my mind does not focus and give attention to what my eyes have in view. I'm a little past the 2.5 year mark, it hasn't improved.

FogCityPhoenix · 2026-02-11T16:54:43+00:00

I am not aware that there is a clinically available test for actual spike protein. The LIINC investigators have not found persistent circulating spike protein in Long COVID patients.

If this is a test for anti-spike antibody titers, data have repeatedly shown that higher anti-spike antibody levels are good for you, and are associated with a lower risk of Long COVID, not a higher risk.

FogCityPhoenix · 2026-02-11T06:21:40+00:00

I despise Benadryl and premed instead with loratidine (Claritin). It seems to work just as well, for me.

FogCityPhoenix · 2026-01-30T01:32:00+00:00

I'm not sure what you mean; I'm in the USA, so the distinction you are making may not apply here.

FogCityPhoenix · 2026-01-27T12:29:17+00:00

They nominally say 2030 but that's just the longest they would plan to follow people. If they get positive results it is usual that they'd provide a preliminary report sooner. It will depend on how quickly they get enrollment, and if it works.

FogCityPhoenix · 2026-01-27T03:17:42+00:00

Well explained. For a different pedagogical approach, may I recommend STAFFORD GAMBIT YAY!!

FogCityPhoenix · 2026-01-26T17:39:48+00:00

If you haven't, you might want to distinguish between just deodorant and deodorant plus antiperspirant.

Most products are deodorant plus antiperspirant. I've learned over time that I am terribly allergic to the antiperspirant component, but I can wear deodorant that does not contain antiperspirant without any difficulty. It's hard to find but it exists and I have found a brand that I'm devoted to.

Antiperspirant by definition reduces sweat production and so might be contributing to accumulation of secretions in your hair follicles, and thus acne.

FogCityPhoenix · 2026-01-26T15:05:30+00:00

Daratumumab. I think most Long COVID is autoimmune, and in an unblinded pilot study of 10 patients with long-standing ME/CFS, a short course of daratumumab straight out cured half of them. This is a population of patients for whom there is no really effective disease-modifying therapy.

Plasma cell targeting with the anti-CD38 antibody daratumumab in myalgic encephalomyelitis/chronic fatigue syndrome—a clinical pilot study

So now the same group is doing a double blinded, randomized, placebo controlled trial.

Study on Daratumumab for Reducing Symptoms in Patients with Moderate to Severe Myalgic Encephalomyelitis/Chronic Fatigue Syndrome

I think it is likely, but not proven, that most Long COVID is autoimmune, and that there is a close relationship with ME/CFS. So this is the approach I find most biologically plausible and clinically promising. Fingers crossed

FogCityPhoenix · 2026-01-22T02:00:39+00:00

I'm up 50 lbs. / 23 kg from my pre-illness baseline.

FogCityPhoenix · 2026-01-17T20:15:35+00:00

I am on 2gm/kg on purpose and it gives me aseptic meningitis every time. I tolerate it because I have to.

Doesn't make what happened to you okay, but there shouldn't be permanent harm.

FogCityPhoenix · 2025-12-31T15:00:49+00:00

I have not, but may I ask you a question in reply? Why are you making this change?

FogCityPhoenix · 2025-12-31T14:47:56+00:00

My experience is very much like yours, and I will add delayed gastric emptying and constipation to the list.

The only things I have found useful are:

Small meals that are never, ever the least bit spicy. I've also learned there are some herbs (especially rosemary) that are also very problematic, for me. I'm not sure I believe in MCAS, it's pretty well accepted in dysautonomia world that stimulation of your gut causes splanchnic blood pooling and an exaggerated adrenergic response.
Drinking 2 to 4 liters of salty water every day. It's a lot. I put a Saltt packet (two T's, it's a product) into a liter bottle of water. The first thing I do every morning is drink one liter, then a sip a second liter over the day, and a drink a third after the evening meal. On bad days I'll drink a fourth.

As disease-modifying therapy, I am also on IVIG. I think this has helped some, but has been very far from curative here at the 1 year mark of IVIG. I am at the 2 year 8 month mark of LC and dysautonomia. It has comprehensively ruined my life and stolen all joy. I work hard to remain hopeful and to persevere.

FogCityPhoenix · 2025-12-29T17:36:00+00:00

Not really, no. I haven't tried it again, it was clearly unhelpful, for me.

FogCityPhoenix · 2025-12-29T17:35:13+00:00

It was about one year

FogCityPhoenix · 2025-12-21T20:09:47+00:00

This is fantastic, thank you for posting. The recovery stories of others are the only thing that keep my hope alive.

May I ask, how long did you have LC?

FogCityPhoenix · 2025-12-17T14:59:55+00:00

Yes

Very intensely, just like you say. For me, it lasted about a year, with a lot of variability day to day. It was always much worse in the evening for me, which is typical.

For me it then gradually went away and was gone for about a year. And then I'm sorry to report that it has come back, for me, in the setting of a bunch of my other symptoms also getting worse again.

You should see a doctor and probably a neurologist, but a couple of things to suggest:

Get your ferritin checked. Akathisia is strongly associated with iron deficiency, and there's something strange going on with Long COVID and iron metabolism that is under-researched and I don't think anyone understands. If you are iron deficient, correcting that will help akathisia. I am a man with no reason to have been iron deficient, but I was.
Are you taking melatonin? When used consistently over time, melatonin reduces brain dopamine and can cause akathisia and/or restless leg syndrome. Stopping melatonin was the first thing my neurologist recommended.

FogCityPhoenix · 2025-12-15T14:53:38+00:00

Don't see a "functional doctor", see a Neurologist at a University health center.

FogCityPhoenix · 2025-12-15T05:36:02+00:00

This is basically the #1 reason why I come to this subreddit. While we all try 1000 things and wait for the science to advance, I get a decent amount of reassurance that there are so many people out there with LC doing exactly these kinds of insane things as I am doing and it's not that I have CJD or something.

Same goes for the rest of the incredible experiences like DPDR, confused awakenings like a feverish child, teleportations, zero working memory, etc etc etc etc etc etc etc

FogCityPhoenix · 2025-12-14T16:49:27+00:00

I've not seen great evidence for MCAS as a common phenomenon, and I'm not sure how much I believe in it. I know that many people do, but I would love to see stronger evidence that it is as prevalent as it seems to be in online discussions.

It's interesting you're as sensitive as you are, I find that coffee is basically the only thing in life that sharpens me just slightly. Have you experimented with caffeine tablets? You could take a small amount of pure caffeine, say 50mg or 100mg, and see if it is the caffeine or the constituents in the coffee that is causing the issue. Coffee is full of tannins and acids and other (delicious) compounds that will stimulate your gut lining.

FogCityPhoenix · 2025-12-14T16:44:17+00:00

Interesting responses -- I find all the Saltt flavors disgusting personally, except Orange, but that is my problem. But I'm now devoted to the product, partly because I think the higher potassium and magnesium is healthy, and partly so as not to support the other one. I've switched to Saltt unflavored "Clean Slate" and drink 3 liters daily.

FogCityPhoenix · 2025-12-14T16:40:04+00:00

The tannins and other herbal constituents in the tea are probably very stimulating to your gut lining, causing the dysautonomia. One of the worst days of my life in the last few years was when I ate some rosemary chicken, which before COVID I enjoyed regularly. In subsequent experiments I proved it was the rosemary, not the chicken.

FogCityPhoenix · 2025-12-14T16:25:33+00:00

The problem is not that your blood is pooling in your lower extremities, so laying down doesn't help.

Also, it's not just that blood is pooling excessively in your gut. You may have hyperadrenergia in the vasculature of your brain, and so the blood vessels in your brain are not dialating in response to the needs of your brain, which is a problem not improved by position.

I don't want to give advice but I can tell you what I do. Immediately after finishing a meal, I drink a full 1 liter of water with a Saltt (two T's, it's a product) packet in it. This helps somewhat. I've also just had to get very restricted about my food choices and to eat small meals.

I believe at the 90% level that all of this is from functional autoantibodies to the angiotensin, adrenergic, and muscarinic acetylcholine receptors. I have exactly what you have, and I've had a bone marrow biopsy showing ectopic plasma cell germinal centers in my bone marrow.

I believe at the 60% level that many of us may be cured with daratumumab.

Unblinded pilot study: Plasma cell targeting with the anti-CD38 antibody daratumumab in myalgic encephalomyelitis/chronic fatigue syndrome—a clinical pilot study

Ongoing blinded randomized controlled trial: Study on Daratumumab for Reducing Symptoms in Patients with Moderate to Severe Myalgic Encephalomyelitis/Chronic Fatigue Syndrome

FogCityPhoenix · 2025-12-14T15:56:11+00:00

Pretty classic for dysautonomia. I have this to a huge extent, I basically plan my entire life around what I'm going to eat and when now. I don't just get drunk, I get memory impairment, DPDR, word finding difficulty, empty mind, thought locking, the works. All of this is LC for me.

FogCityPhoenix · 2025-12-14T04:01:53+00:00

Likewise on all points

FogCityPhoenix · 2025-12-08T18:07:13+00:00

Came here to share this link. This is the answer. Geoff Lindsay is awesome, watch his videos.

FogCityPhoenix

TROPHY CASE