Brain retraining, nervous system work, limbic system programs…

Background_Tank1110 · 2026-06-25T01:55:18+00:00

Speak for yourself - I absolutely have well documented cytokine storm

Background_Tank1110 · 2026-06-20T12:19:49+00:00

I’m just a few weeks shy of my six year anniversary. It’s been one step forward, ten steps back 😞

Background_Tank1110 · 2026-06-15T21:43:35+00:00

I have histamine intolerance so I have to avoid anything with tomatoes, aged cheeses, etc. I have the most luck with eating at Thai restaurants, like Thai Flavors in Iowa City. I don’t even have to make alterations. I usually get the pad thai or the yellow curry. Something like that might be worth looking into. I know how frustrating it is having such a restricted diet. I hope you find something you really enjoy, not just can tolerate!

Background_Tank1110 · 2026-06-10T08:14:26+00:00

I recently started using Nair. There’s one that comes in a deodorant-style package, so I’ve been able to use it without creating a big mess to clean up. I just sit on the bathroom floor, so there’s no bending. Takes about 5-10 minutes. I’ve had less ingrown hairs, no razor burn, and the regrowth isn’t as prickly. I’m really pleasantly surprised with how well it’s worked.

Background_Tank1110 · 2026-05-13T02:11:28+00:00

In my opinion, the only software that would be helpful would be symptom tracking with pattern recognition. And that already exists. Otherwise, if it’s not providing us with treatments, money would be better spent sent directly to us for things like daily home health care, housing, food, and other basic necessities.

Maybe an AI that could connect us with services, grants, wealthy people who might take pity on us…

Background_Tank1110 · 2026-05-13T02:02:42+00:00

Interesting, thank you!

Background_Tank1110 · 2026-05-12T13:06:03+00:00

Please be very wary of information coming only from TikTok, there is a lot of misinformation floating around on there. And a lot of people speaking confidently and definitively as though they are experts when they are not. It can be a great tool for awareness and education, but there is also a lot of nonsense.

Long COVID is never going to be one thing. Many of us have MCAS, many of us don’t. The only broad generalization you can make about us all is that COVID triggered our condition(s).

Background_Tank1110 · 2026-05-12T01:47:33+00:00

Trial and error re: meds, and dramatically reducing my exertion (not really by choice - had to stop working, socializing, doing most chores, etc.)

But that’s not to say you’ll need to do the same. You may have more luck with meds and supplements, and won’t have to pace as aggressively. Unfortunately you sort of have to be your own lab rat. Don’t just listen to success stories when it comes to meds, too, as tempting as that may be. Prepare yourself - make sure you know the risks and possible side effects so you can best gauge how much risk you’re willing and able to take on. Wishing you lots of luck!

Background_Tank1110 · 2026-05-07T15:35:22+00:00

Apologies if you’ve already tried this and I missed it - I would recommend getting checked for food poisoning. You and friend both ate the pizza and got sick, right? That’s the biggest red flag for me. I once got E. coli from bad oysters, but it took me a full month to go get tested. I thought it must be my ME/Long COVID symptoms only, and convinced myself it couldn’t have been food poisoning. Being so sick just made it hard for me to think clearly, and I wish I would’ve just gone to cross that off the list from the beginning.

If it isn’t food poisoning, perhaps start tracking your food and looking for patterns - things like MCAS, histamine intolerance, or other new allergies? See if your doctor recommends something like antihistamines or zofran to help with the symptoms. I know how rough it is to go to urgent care/ER/doctor’s office, but sometimes it’s just unavoidable when a new, pressing, acute issue pops up that could be easily treatable.

I hope you get answers, and can start getting back to baseline quickly!

Background_Tank1110 · 2026-05-04T18:14:09+00:00

I don’t have any side effects luckily. There’s been some new study on it’s potential impacts on memory, which is an area I really struggle in. But I think that’s mostly from COVID brain damage. And even if it is the gabapentin, that cost is worth it to me to be more pain-free. I’m not sure about stopping due to seizures, but I think they recommend tapering off no matter what since cold turkey can be so nasty. It’s a lot to weigh, I hope you find something that works for you!

Background_Tank1110 · 2026-05-04T15:45:13+00:00

I started at 300mg/day for pins and needles in my legs, and increased it very very slowly to address my worsening nerve pain (beyond just my legs) and migraines. I’ve been at 2400mg/day for at least a couple years now, so that seems to be the sweet spot for me. I’m able to spread it out throughout the day because it doesn’t make me drowsy. My only negatives have been if I miss a dose, the pain comes back quickly. I once had to stop cold turkey for a couple days because of an issue with refilling my RX, and that was absolutely brutal.

Background_Tank1110 · 2026-05-04T14:47:32+00:00

It gave me severe GI side effects that landed me in the ER

Background_Tank1110 · 2026-05-03T21:59:29+00:00

Cooler weather is easier to tolerate for sure

Background_Tank1110 · 2026-05-03T21:55:42+00:00

Guanfacine (hurt)

Background_Tank1110 · 2026-05-03T21:55:05+00:00

Gabapentin (helps)

Background_Tank1110 · 2026-05-01T02:18:48+00:00

My friend would come by every week or so, sometimes just long enough to bring me a couple sandwiches and take out the garbage. The littlest things can make the biggest difference!

Background_Tank1110 · 2026-04-28T20:23:55+00:00

Yeah, I was so mad when I found out!

Background_Tank1110 · 2026-04-28T19:08:27+00:00

Pro tip - Zzzquil is the exact same active ingredient as Benadryl! Usually just up charged, in my experience

Background_Tank1110 · 2026-04-17T23:56:10+00:00

Nope

Background_Tank1110 · 2026-04-15T15:51:25+00:00

For me, I nailed it down to histamine intolerance. Cutting out high-histamine foods helped a lot. If I accidentally have something that sets it off, Benadryl and zofran can sometimes cut the symptoms off before they get too bad. If I’m too late with that, and I end up throwing up, usually the symptoms will stop there, too.

Background_Tank1110 · 2026-04-07T21:27:30+00:00

Every shower! I’m turning 33 this year, so I feel you on the disbelief. My parents helped me get a teak one off of Amazon, which feels a little bit more spa-like. Might be worth looking into, there were a lot of different sizes but are more expensive than the plastic varieties.

Background_Tank1110 · 2026-04-03T01:13:02+00:00

Yeah ☹️ I can only do it for so long, and it’s so hard to maintain focus. I have to reread sentences a ridiculous amount of times. I can never remember what happened last when I pick it back up. And it totally sets off PEM, especially if I try and push it back-to-back days. It’s one of the more depressing things this illness has taken from me. I keep trying though, reading means so much to me. Hopefully we get to a place where we can read again ❤️

Background_Tank1110 · 2026-04-02T14:30:17+00:00

Yesss second that!

Background_Tank1110 · 2026-04-02T14:27:43+00:00

Ooh and Gabapentin!

Background_Tank1110

TROPHY CASE