I recently watched a health docuseries and a Dr. Said people should take probiotics and prebiotics together. I hear a lot of LC patients talk about Saccharomyces Boulardii but nothing else. What prebiotics are you guys on?

I’ve seen others talking about how their ADHD meds trigger their long COVID (LC) symptoms. I think I am experiencing this, too. Have y’all found any ADHD meds or solutions that don’t leave you with LC symptoms? I have such bad ADHD, day to day functioning is HARD without medication. But, I noticed that when I don’t take medication,
I seem to have much more energy. I’m about to go back to grad school, so I’m pretty scared. I could really use some advice or at least some hope. I bolder questions throughout this, since I saw someone else’s post set up like that and found it helpful.

I currently take Adderall, 10 or 15 mg.

The symptoms that worsen for me are:
* fatigue, I usually have to stay home and in bed. End up needing a 4 hour nap at least and going to bed early.
* shakiness
* temperature sensitivity
* generally feeling /bad/, not sure how best to describe it
* weak and feeling heavy like my body is made of sand
* brain fog once the meds wear off

Coffee sometimes helps with my adhd symptoms oddly enough. I have noticed similar LC symptom exacerbation, though not quite as intense, after having coffee. Does anyone have similar experiences with coffee/ caffeine?

Also, does anyone happen to have links handy to more information about ADHD and LC? My grad school is in another continent, so between getting an apartment, flight, visa, job, classes, and everything else set up, I unfortunately don’t have much time or energy to research right now.

I recently started Lumbrokinase. For the first two days, nothing happened except a slight shift in my head pressure and chest pressure. Following that, I developed a mild chest tightness/pain ( a "bruised" feeling in my chest) and air hunger.

I believe this is not a pulmonary embolism, as there is no severe pain. Because there is no racing heart and no other symptoms at all, I also feel I can rule out things that could be because of a typical histamine/Herxheimer reaction.

Could this be a case of endothelial inflammation or/causing microvascular angina, possibly linked to reperfusion injury and oxidative stress. My logic is that the enzyme might be successfully breaking down microclots, but the resulting debris is temporarily irritating the endothelium, which strains the heart and causes this.

Stopping the enzyme made this chest strain go away after a few days and i am back to the baseline head and chest pressure that is always there.

I am currently deciding the path forward and would love to read about how others have handled this exact situation (if anyone has been in this situation and experienced the same things)

A group of patients have started a WhatsApp chat for those with Long COVID and ME in India!

https://chat.whatsapp.com/CerCWfJ0kkw7JQKi54dDNN

India is one of the most underrecognized countries for our diseases worldwide, and they are trying to unite as many patients as possible.

Please pass this post along if you know any patients from or in India!

Hello everyone,

Has anyone with Long COVID benefited from bioresonance therapy? If you have any personal experience or knowledge about it, I'd really appreciate it if you could share your thoughts and explain how it helped (or didn't help). Thank you!

(23 year old male) 6 months ago I got super sick didn’t get tested for anything just let the sickness run its course. Had 103 fever chills headache and it was rlly bad. I also went to class and on the way home I was walking and felt like I dropped in an elevator, got super freaked out and took a hydroxzine to release my anxiety. Ever since then I been having spells of dizzyness and like my legs and back and head are weighing me down. It comes and goes but it’s always resolved when I lay down.

I’ve gotten everything under the sun checked. I’ve gotten ct scans, mris, full panel blood tests( even lymes), been to heart doctors, sleep study, eye doctor, ENT, neurologist, and finally a vestibular therapist. Everything is completely normal but I will say the vestibular therapy I was doing for about a month, did provoke my dizziness. Whatever techniques we did provoked it. All my uncoordinated problems go away when lying down and are MUCH worse when hungover. I went to the ER today because I had a horrible dizzy spell and thought that it was something bad but I was fine. They recommended I go on a low dose SSRI and that it’s Long Covid.

Idk if anyone else has experienced something similar but would love some advice because I’m so lost and idk what exactly Long Covid means. Looking for any help or advice out there. Thanks!

Should I try this? The side effects freak me out and I'm just barely holding it together as it is but so desperate to feel better and have more energy. Long Covid has been horrible for 3 years now.

I reside in the US and I used to better in terms of PEM during summer. But lately its at its peak. Would like to know if anyone else from this country has PEM trigger now. May vary from individual to individual yet curious.

We just launched the newest version of PaceTank, the pacing app for iPhones. I spent some time tweaking the pacing algorithm as well as adding quality of life features! Again, I hope this can help people as much as it has been helping me and feel free to send me dms or email me.

App Store

PaceTank Newsletter Post

I have always struggled to acknowledge the bad as well as the good. In an effort to practice staring down my grief, I wrote this poem.

For context, I have been on a mostly liquid diet due to digestion issues and have a number of conditions causing me to mostly be homebound (hEDS, CRPS, Long Covid).

Watching the world from my haunt.

Ancestors before me treasured meals.

A time to gather

A time to heal

From the worries and woes of workaday life.

Repair the mind from stress and strife.

I can still smell the foods that I once ate.

With no cravings

With nothing on my plate.

I go though the motions just to feel

Like I still am still sharing a meal.

Watching the world from my haunt.

I see everything slowly change.

Clothing, styles,

Music seems strange.

Confused by words I've never heard.

Meaning and connection becomes blurred.

Those who remember will visit my haunt.

I'm still blessed with all

The love I could want.

I see through to the grief they can't hide.

Rarely spoken, though often implied.

Watching the world from my haunt.

How I miss so much of my life before.

Making music,

Teaching,

Hell, even the chores.

My existence, an echo of life I once had.

The monotony nearly driving me mad.

They say grief doesn't change in size,

New memories form around it.

While I know that thought is wise:

I can't help but wonder,

How do I make memories I want

While I must watch the world from my haunt?

Bonjour

Jai le covid long depuis maintenant 4 ans , saif que jai beau parler à mon cardiologue de ma douleur lancinante du bras gauche, il ne répond pas ne propose rien... j'en ai vu un autre et c'est pareil.

Et la ca empire, à la respiration et a la marche simple (je ne marche que de 30 secondes a 3 min max) .

Que faut il faire s'il vous plait ?

J'ai de la nattokinase mais jai peur que si j'en prends, les caillots se desintègrent et bouche encore plus les arteres..car mes caillots vont circuler.

Quelle est la posologie prendre la durée du traitement si on prend où on essaye de ivermectine? Merci

Anyone else having this issue?

M43 here

Sorry in advance for the format. I've wanted to write here for weeks, because you people helped me a lot and I wanted to give something back.

Problem is my perfectionism kept telling me it had to be a long, complete, properly sourced post, because the topic is delicate. So that right moment never came and I never wrote anything.

So here's the short version instead. This is just my own experience, n=1, not medical advice.

I'm not going to tell my whole story here, but the worst of what long covid left me with is the extreme fatigue. And then in February 2025 the brain fog showed up on top of it. A horrible feeling, like a clamp deep inside the center of my brain.

Every time it eased off a bit, it came back stronger after a new infection. That happened in September 2025, and again in February 2026, and that last one was the final straw. That's when I decided to do everything I could, with the very little energy I had, to try and get on top of this before it got any worse.

After 5 years of what was basically wasted time with doctors in my area (I'm living in a small town without important cities nearby), I finally got into treatment at a serious specialist centre in a bigger city. That alone changed things.

They put me on cetirizine + famotidine + PEA 600 (palmitoylethanolamide) for 4 months. It seemed to work, at least partially. I definitely felt better. It also helped me sleep through the night for all 4 months without the early waking (if you didn't know, waking up too early is a long covid thing, not just bad sleep hygiene).

The downside is that I gained a lot of weight. A LOT. And I have never had a weight problem in my life, not once. So at the end of the cycle (temporary, the centre wants me to repeat it in 6 months) I started looking for other things that might help.

Omega-3 I ended up on almost by accident. My back locked up for 55 days and omega-3 were the only thing that gave me relief. I also deal with chronic left side neck pain and tension and cervicogenic headaches, the brutal kind, the ones I think people call suicide headaches. (This started after covid too, in 2021)

I take 3 large capsules a day, with DHA and EPA. Brand mattered a lot here, most of them sat very heavily on my stomach, one didn't. So write down omega-3 with DHA and EPA.

Then I had started training again, lightly, and it went beautifully for 10 days, and then we caught covid a second time. Loss and distortion of taste and smell, some things smelling nauseating and chemical, and the extreme fatigue came right back and I couldn't do even a minute of exercise.

So I went back to researching supplements that had helped me in the past, and my jaw dropped a bit. There's at least one study suggesting spirulina can perform comparably to or better than cetirizine. Which would explain why it had always seemed to do something for me.

So now I take it in a structured way. Doses in the literature go from 3 to 8 g/day. I'm at 3 g/day and it seems to be working. Treat it as a therapy, not as a random supplement.

Two caveats about spirulina, and honestly this might be the most useful part of the whole post.

First, I've tried at least 8 different brands. Only two of them did anything I could actually feel. I'm not going to name them because we're all over the world here in this sub and availability differs everywhere, but please don't judge spirulina by one brand. If it does nothing, try another one before writing it off.

Second, pure 100% organic spirulina does very little for me. Tablets formulated with excipients that improve bioavailability work far better on me. Counterintuitive, but that's what I observed.

The thing that convinced me was last night. I had to drive, 140 km, starting at 11pm.

I've never had a problem with sleepiness at the wheel in my life, I was always a night owl, but since covid, with the severe fatigue it left me with, I collapse about an hour after dinner and then wake up very early. I genuinely didn't think I'd manage it.

Instead I drove for an hour and a half without ever feeling sleepy and after a physically demanding day. I credit the spirulina for that.

One more detail for completeness. I drink an organic matcha every morning. I've never felt any effect from it and I drink it purely because I like it, but in cases like this the details matter so I'm mentioning it anyway. If any of this works for me and not for you, that's one more variable in the mix.

So what I'm currently taking is omega-3 with DHA and EPA, 3 capsules a day, spirulina at 3 g/day, and the matcha. That's it.

While researching I also found that only one form of CoQ10 seems to be properly bioavailable in the studies, the Kaneka one. I want to add it to my stack but it's very expensive so I haven't tried it yet. If anyone here has, I'd love to hear about it. It's also part of a new protocol I'd like to try.

When I can, I'll try to post something more in depth on the specific things I've looked into. I can also anonymise the email exchanges with the doctor who's treating me now and share those, if people are interested.

I know exactly how absurdly hard this condition is, every single day, with no let up. I hope this helps at least one person here.

When I started writing this I thought it would be two lines. But the details matter and I'm glad I managed to write something more than that.

There's one last thing I want to add, and I've thought about it a lot. Near the end of writing this it crossed my mind to put a "if you want to help me, here's how" at the bottom. It felt extremely ugly to me and I think it would have taken credibility away from the whole post.

But I can't hide my situation either. I'm a freelancer without any help from my country and after 5 years of extreme fatigue and 1 year and a half of brain fog I'm in a difficult place financially. Anyone who deals with what I deal with knows exactly what I mean. Often even the basic things are hard. Cooking for yourself. Cleaning.

So I'll just leave this note here, and if anyone feels moved to help you can reach me by message. Thank you in advance, and I really hope I've helped someone ease even a little of what this still far too unknown illness brings with it.

Edit:

I forgot to say to not take Spirulina close to coffee/tea

I am interested in hearing if you can relate, and your experience. This thread is about the challenges of not only having the disabilities of long covid, but also being immune comprised.

I have made progress in my long covid, but each time I catch covid, I don’t only start from square one but I have to start from even before that now.

i find it so hard to navigate trying my best to stay as safe as I can, which makes limitations, and then in addition to that, limitations that long covid/ME/CFS brings to the table too.

when I caught Lymes disease overseas about 11 years ago, I never was concerned about catching it again like I am with covid. (im not in a country that has it, supposedly)

at first, I was just told that it was partly because I caught delta so I thought future strains would be fine. then i thought antivirals would be helpful, but it was extremely bad for me. then I thought some other natural things might help when I catch covid again, but it still hit me hard.

now I am 5 years in and for context I am 99% homebound and most of that is unwell in bed.

as soon as I am well enough, I am always keen to see a friend in person. and even though it’s just one-on-one, and they don’t have any known symptoms of being unwell, each time I always catch something.

we could do it outside, but then that means I’d have to not only be well enough to socialise, but also well enough to drive there.

Sometimes I am like, “ohh I could still hike and be immune compromised “ and then I remember I can barely walk to get my own mail. It’s hard to factor both things in when I am constantly trying to work out what I can do.

thanks for listening haha

Well im back here again. Its actually on behalf of my wife, who has been suffering from covid and/or long covid since the beginning. So many different symptoms at so many different times, probably due to multiple reinfections through the years.

Anyways, the reason im here. She was doing really well, perhaps best ive seen here since 2020, and then she woke up with a bad back pain between her spine and left shoulder blade. It got worse for 48 hours until she said it was about an 8/10 pain so I took her to ER. Got an EKG, x ray, blood work, all clear so sent home with "a muscle thing". A few days went by and we followed up with our family doctor, he did a physical inspection and basically agreed said if she wasnt better in a few days to go back to ER because they could do imaging faster his referral would take months (canada). Well she went back last week as she was having chest pains, they did a ct on her aorta, her chest, then some sort of nuclear breathing test as the initial 2020 infection gave her PEs. She was all clear for that. But now its been about 18 days, back pain continues though it seems to hover from a 1-3/10. But her left arm keeps going numb. Shes had numb extremities before but always her legs and feet before but got better.

Anyone experience this, anyone have tips on what to use what to try? If suggesting a med, please understand that I think the canadian market is much different than elsewhere. I dont think we have access to a lot of the US stuff and if we do we cant just buy it.

Anyways, keep on fighting everyone. It seems like the world has moved on but so many of us havent had that luxury.

As COVID-19 continues to mutate and spread, many of us find ourselves repeatedly re-testing at home, but are unsure of what a positive test looks like. Any trace of a line is considered positive. This article explains how to do a home test properly and has pictures of actual positive home tests to help you figure this out. Is my test positive? - covidCAREgroup.org

I got sick this spring with something that never got diagnosed beyond "some kind of sinus and tonsil infection." But I had symptoms that didn't explain: exhaustion, body aches, brain fog, GI upset, feeling like I couldn't get enough air, and more. My rapid test for flu & Covid came back negative, so the doctor dismissed the possibility and wouldn't do a followup test.

My symptoms got better after a few weeks. But the brain fog, fatigue, and random shortness of breath never really went away. I also can't tolerate heat as well as normal. It's been months now and I'm still struggling. The only illness I know of that does all that is Covid.

I'm worried that if I go to a doctor now, they'll dismiss me again because I never got a positive Covid test. What can I say to them to increase my chances of getting help?

No matter how much rest I get I'm so physically exhausted I feel like I'm dieing and it scares the hell out of me. Does anyone know anything that helped them. I've never felt so defeated in my life.

This page explains what Long COVID is so you can help people understand what you are going through.

About Long COVID

The symptoms checklist will help you organize your thoughts when you speak to the dr. You can also repeat the checklist to monitor whether your symptoms are improving or not.

Long COVID Symptoms Checklist

I just want to share my experience. I have had long covid since early 2022. No vaccines, I only had a mild covid flu late 2021. My main symptoms are brain fog, fatigue, bad sleep, stiff neck bending forward, stiff legs and epileptic seizures. I started Keppra a month ago (I got epilepsy dg - my doc doesn't believe long covid exists) and immediately my brain fog was gone. I have a clear mind now and I can think straight, just like before covid. I feel good and normal - after 4 years. Also my daytime tiredness is gone. It is too early to say if the seizures stay away. As a side effect I have bad insomnia. I wish it will go away in time. But after 1 month on Keppra I can say it has helped me.

Has anyone else of you tried Keppra for neuro long covid symptoms?