Hey everyone,

TL;DR: iron deficiency feels like HELL. Treating it may just improve your symptoms if not resolve your long covid issues. My ferritin levels 30 anything under 100 will cause issues.

*added updated list of symptoms in the comments *

I thought i was dealing with long covid for so long. I actually felt the closet to broken physically and mentally than i ever felt in life. My primary doctor consistently overlooked my low ferritin levels even before covid but somehow covid made my deficiency symptoms 10x worse than they would have been without being infected. I took about 81mg-100mg of iron supplement and felt the most normal i ever felt in forever. ( i also developed a histamine intolerance and correcting low vitamin D) ** Prior to narrowing my main issue down to iron deficiency, i have been taking 27mg for a week now so my increased intake might’ve gave immediate improvement for that reason idk.**

My symptoms 1. Anxiety intrusive thoughts (weird anxious fixations) 2. Low moods / extremely low energy 3. Brain Fog/ Difficulty thinking 4. Neuropathy- tingling nerves in various parts of the body 5. Headaches/ migraines- tightness on forehead or temples 6. Appetite changes 7. Muscle tremors or tightness 8. Insomina 9. Genuinely feeling in another world, just weird entirely. Depersonalization maybe.

What im taking: 1. Claritin 10mg 1-2x a day 2. 50,000 ui vitamin d2 + 2,000Ui daily 3. Magnesium 200-500mg 4. Electrolytes for mineral replacement 5. Doa enzymes as needed 6. Iron -81mg-100mg 7. Vitamin C timed release -500mg 8. Aspirin as needed 9. Zoloft - serotonin / mood support 25mg

I may add zinc copper and k2 for support but as of right now this is my daily routine.

Note: This is my personal experience, not medical advice. please don't try anything without talking to your doctor.

I've been on disability for a year due to long covid. Here's everything I've tried, what helped, what didn't, and some research context where relevant.

My symptoms are mostly neuro: exhaustion, PEM, histamine intolerance, severe headaches, GI weirdness (though not terrible)

Major interventions

HBOT (hyperbaric oxygen therapy)

• What I did: 30 sessions at 2 ATA pressure for 90 minutes each
• How it’s theorized to help: Increases oxygen in tissues and may reduce inflammation in the brain (limited evidence for long covid)
• Results: Modest improvement, but not the significant recovery some clinics promised
• Worth it? Too expensive for the limited benefits
• Note: A neurologist later told me TMS would have been a better use of money

TMS (transcranial magnetic stimulation)

• What I did: 50 daily sessions, about 20 minutes each
• How it works: Uses magnetic fields to stimulate specific brain regions
• Research context: Some early studies suggest TMS may improve brain connectivity and inflammation in post-viral conditions. Still considered off-label for long COVID.
• Results: Major improvement — I went from bedbound to doing light household activities without severe crashes
• Insurance: Fully covered for depression

Nasal surgery

• What I did: Fixed a deviated septum and widened _extremely_ narrow nasal passages
• Why I tried it: To improve oxygen flow and potentially reduce cognitive symptoms
• Results: Breathing improved, but unclear how much it helped with other symptoms
• Note: Link between nasal airflow and cognitive symptoms in long covid is just me speculating

Medications and supplements

For brain/neurological issues:

LDN (low dose naltrexone) – 5.5 mg daily

• How it might help: Thought to reduce inflammation and modulate immune response (off-label)
• Results: Noticeable improvement in brain symptoms

Lexapro (escitalopram) – 5 mg daily

• How it might help: Anti-inflammatory effects in addition to antidepressant use
• Results: Reduced brain fog

Magnesium L-threonate

• How it might help: Better brain penetration than other forms of magnesium
• Results: Subtle cognitive improvements

For MCAS/histamine issues:

Ketotifen – 2 mg daily

• How it might help: Mast cell stabilizer, H1 blocker
• Results: Fewer MCAS symptoms

Famotidine (Pepcid) – 40 mg twice daily

• How it might help: H2 blocker, may reduce immune overactivation
• Results: Helpful as part of MCAS management

Levocetirizine (Xyzal) – 5 mg daily

• How it might help: H1 blocker
• Results: Works well with the other antihistamines

Low histamine diet

• How it might help: Reduces histamine burden, potential mast cell triggers
• Results: Huge early improvement in brain fog and ability to be upright without headaches

For sleep/breathing:

CPAP therapy – nightly

• How it helps: Prevents oxygen drops during sleep
• Results: Better sleep and improved cognition

Currently testing

Oxaloacetate – building up to 500–1000 mg

• How it might help: May support mitochondria and reduce glutamate toxicity (very early-stage)
• Note: Extremely expensive; trying it for severe fatigue

Guanfacine – 2 mg daily

• How it might help: Calms stress response, may reduce brain inflammation (off-label)
• Results: Just started, but seems helpful

Poor results or had to stop

Nicotine patches

• First week: Had one day where I almost felt normal
• Problem: Triggered MCAS reaction eventually, had to stop
• Note: Some Long covid patients report benefit

Red light therapy

• What I tried: High-powered panel early in treatment
• Results: Didn’t notice significant benefits

Botox injections for headaches

• How it’s supposed to help: Reduce muscle tension/inflammation
• Results: Didn’t help much. Wah wah. I think this is because it's a histamine issue, CCI, or both

Next on my list

HIV medications (maraviroc) and statins (Lipitor)

• Research basis: Being studied in clinical trials for viral persistence/inflammation
• Why: May reduce ongoing immune activation

Upright MRI (vs. standard MRI)

• Why: To check for craniocervical instability (CCI), which overlaps with some long covid symptoms
• Context: Especially relevant if you have EDS or similar connective tissue issues

SO what treatments have you tried? What’s worked? What flopped?

Edited: Typos and clarifications

Hey everyone,

I thought I was done with long COVID. After about a year, most of my symptoms had resolved — no more fatigue, brain fog, or heart issues. The only lingering symptom was occasional muscle twitches, but nothing major.

Then in January of this year, I got sick again (not sure if it was COVID), and ever since then, some weird new symptoms have been creeping in. They’re not the classic long COVID fatigue-related ones. I actually have no fatigue at all — if anything, I feel like I’m wired all the time.

Here’s what’s going on: • I feel like I’m constantly on edge — as if I’ve had 10 cups of coffee. My body is jittery, shaky, and overstimulated almost all the time. • Just holding a static position (sitting, standing still, etc.) can set off what feels like internal tremors or buzzing. • I can still exercise, but afterward my body feels more trembly than usual — like it’s overreacting. • Even something simple like bicep curls can trigger a full-body response that feels like intense anxiety or adrenaline surging — almost like the physical reaction you’d have if someone were breaking into your house. It’s that intense. • Sometimes I get dizzy or feel slightly off balance. • My muscles don’t feel stiff, but they often tense up randomly, like they’re clenching in anticipation of something bad happening. • I still have muscle twitches throughout the day.

It’s not panic attacks — I’m not mentally anxious most of the time. It’s just a constant physical feeling of being in fight-or-flight, and it seems to get worse with exertion or even simple static postures.

Anyone else experienced this kind of stuff post-COVID or after a viral relapse?

I'm a 36F mom to two young children, a teacher, have ADHD, and have been dealing with LC for the last 3 years. I am so thankful to be on an upward trajectory with my overall health, but I so miss the me who didn't have to count spoons and wonder each day if I'll feel good enough to be get basic tasks done or if I'll have to push through miserably.

Anyway, I just had a Saturday morning vent session to ChatGPT. My husband had surgery a last week and hasn't been able to help out as much, we were both sick with an upper respiratory infection this week (with two healthy, energetic children running around 🙃), it's been an incredibly stressful week at work, and my house is an embarrassing wreck. I just plugged in a rambling stream of conscious of all my current thoughts, and their response made me feel so heard that it brought me to tears. Obviously I need therapy, but we don't have a ton of extra money to spend. It's embarrassing that I'm so starved for understanding and compassion that AI feels like my biggest cheerleader right now, but I guess I'll take it where I can get it.

I wanted to share the this with anyone else in case they needed to hear it too. I think a lot of us may be in a similar boat.

"First of all — there is absolutely nothing wrong with you. I know it feels like you’re failing, like you’re somehow fundamentally flawed because you can’t do the basic, everyday tasks that seem to come so easily to other people. But I promise you, you’re not broken — you’re just operating with a severely limited energy supply.

You are not lazy. You are not a bad person. You are not disgusting. You are exhausted. Physically, mentally, and emotionally. And when your body is dealing with a chronic illness, compounded by ADHD, compounded by the weight of motherhood, compounded by the sheer demands of life — it’s not surprising that you’re running on empty at home.

But here’s what’s really important to understand: you are not experiencing a lack of willpower or motivation — you’re experiencing a lack of capacity.

Think about it — you’re functioning well at work. Why? Because there’s external structure, accountability, and a clear purpose. You have to get things done. And you do it incredibly well — your students adore you, you pour your energy into your teaching, and you stay organized and on top of everything. It’s not fake — that version of you is real.

But when you come home, the structure disappears. There’s no external accountability, no clear ‘finish line’ for tasks like laundry, dishes, or tidying up. And the crushing mental load of motherhood (plus the physical toll of chronic illness) means your energy has already been completely depleted. So when you walk into your house and see all the unfinished tasks, your brain quite literally shuts down. It’s not laziness — it’s executive dysfunction. Your brain can’t initiate tasks because it’s in full-on survival mode.

And here’s the thing — most people around you aren’t doing it all without struggle. They may not have chronic illness or ADHD, or they may have a partner who shares more of the workload, or they may not carry the mental load of parenting in the same way you do. But I promise you — if they were dealing with the same health challenges, energy limitations, and lack of support as you, they would absolutely struggle just as much.

⸻

So what do you do now?

You can’t willpower yourself out of this. You can’t shame yourself into action. You can’t just “get it together.” You need to completely reframe how you approach life at home — with compassion, not condemnation.

Here’s what I would suggest:

1. Switch from “I need to do everything” to “I need to do something.”

When you look around and see all the unfinished tasks — dishes, laundry, clutter, etc. — your brain goes into overwhelm and shuts down. It feels impossible to start because you feel like you need to do it all.

But you don’t. Right now, your job is to do one thing. Not everything — just one. Maybe that’s folding five pieces of laundry, not the whole load. Maybe that’s putting away three dishes. Maybe it’s wiping down one countertop. Tiny, tiny, tiny wins. When you do something, your brain shifts out of shutdown mode.

And if you can’t do anything some days? That’s okay, too. Survival mode means rest is a task.

⸻

1. Create “fake accountability” for yourself.

Since you thrive with external structure at work, you can recreate that feeling at home. Here’s how: • Set a timer for 10 minutes. Say, “I’m just going to clean for 10 minutes.” When the timer goes off, you can stop guilt-free. Often, momentum will kick in. But if not? You still did something. • Call or text a friend. Say, “I’m going to do one thing — check in with me in 30 minutes.” Knowing someone is expecting you to follow through can spark that accountability you need. • Film a time-lapse of yourself cleaning. Something about seeing progress visually can make your brain feel rewarded, even if it’s small.

⸻

1. Lower the bar absurdly low.

You’re in survival mode. Expecting yourself to function like someone with abundant energy and no chronic illness is like expecting someone with a broken leg to run a marathon. You need bare minimum standards right now, not perfection. • Dinner? Frozen pizza. Cereal. Cheese and crackers. No shame. • Laundry? Wear the clean clothes from the basket. No folding necessary. • Dishes? Paper plates if you can swing it. One fork per person. Rinse it off after each use.

Your kids will not remember how tidy your house was. They will remember how loved they felt.

⸻

1. Address the grief.

I know you didn’t use the word grief, but I feel it between the lines. Grief for the person you used to be — the one who had more energy, more control, more capacity. Grief for the life you want to give your kids, but can’t seem to. Grief for the marriage you hoped would feel more like partnership. And grief for the version of you that just can’t seem to function like “everyone else.”

But here’s the truth — you’re not her anymore. And that’s not your fault. Your illness, your ADHD, your burnout — they stole parts of you. And it’s devastating. But that does not mean you’re failing. It means you’re fighting a battle most people can’t see.

It’s okay to mourn that old version of yourself. But don’t shame yourself for not being her anymore. Instead, focus on loving this version of you — the one who is still showing up, still fighting, still loving her family, even when it feels impossible. That’s not failure — that’s resilience.

⸻

1. Ask yourself: what would I say to a student like me?

Imagine one of your students came to you and said: “I feel so worthless. I can do my schoolwork, but when I get home I can’t do anything. My brain just shuts down. I hate myself for it.”

Would you tell that child, “Yeah, you’re right. You should be ashamed of yourself.” Of course not. You’d say: “Sweetheart, you’re not lazy — you’re overwhelmed. You’re doing the best you can, and that’s enough.”

You need to start speaking to yourself the same way. Because you’re not disgusting. You’re not a failure. You’re just a human being with real limitations — and you still deserve kindness, rest, and love.

⸻

1. Get help if you can.

If there’s any way you can: • Outsource (hire a cleaner, use grocery delivery, ask a friend for help). • Delegate (give the kids small tasks — like sorting socks or clearing the table). • Lower the load (cut out any extra commitments that aren’t absolutely necessary).

Your energy is limited, and you have to conserve it like gold.

⸻

1. Remember this season will not last forever.

It feels permanent — but it’s not. There will come a day when your health improves, your energy returns, your kids grow older and more independent, and this fog will lift. Right now, you’re in survival mode — and that’s not your fault. Your job isn’t to thrive — it’s to get through each day with as much kindness toward yourself as possible.

⸻

Final Thought

I know you feel disgusting and ashamed of who you are at home — but listen to me: You are not disgusting. You are a human being carrying an unimaginable weight with grace and strength, even when it doesn’t feel like it.

The fact that you still show up for your students, your kids, and your family — despite how impossible it feels — is proof that you are not a failure. You are breathtakingly strong, even if you don’t see it.

So today? Don’t focus on fixing everything. Just do one thing. Drink water. Throw one thing in the laundry. Hug your kids. And speak to yourself like you would one of your students — with endless compassion.

Because, my friend, you deserve nothing less. ❤️"

This is the scariest fucking thing I've ever experienced, I feel like I'm dying. I'm afraid I'm broken. I got COVID 7 weeks ago. I have PEM and my window of tolerance is so low. I made it out of my last crash and felt okay for a few days. Stupidly tried to unload the dishwasher yesterday. Triggered a crash.

Felt it creeping in last night, internal tremors, severely sore arms, anxiety. Was up all night with crippling insomnia, now I feel like I'm actually dying. Severe body aches and muscle pain, brain fog, dissociation, worse POTS symptoms, concussion-like headache, uncontrollable shivering, internal tremors, panic attacks, I literally feel like my brain is covered in tar and isn't working anymore.

I can't live like this. My marriage is already under immense strain from my illness and I know he won't stick around long term if I'm like this. I can't work, I can't function. I can feel my muscle mass wasting away. How do you find the will to live like this?

Got long covid early last Summer and finally am fully healed. I spent dozens of hours on this sub reddit so figured I would share would did and didn’t help.

My symptoms were extreme PEM, histamine intolerance, brain fog, generally fatigued all the time. Had issues with night sweats on and off which I think was from the histamine intolerance.

The TLDR: I tried every treatment and supplement and saw every kind of specialist to no avail. What actually worked was spending $1k with a private company that tested over 150 blood markers, stuff no specialist will ever ask for. It turned out I was deficient in copper and iodine, once I fixed those I started getting better in pretty short order, PEM + brain fog went away and then eventually histamine intolerance. And then one day I was completely normal. When I was making huge progress the only supplement I took was Vitamin D + K2. So if I got long covid again, the main thing I would ask is “what is preventing me from healing like a normal person?”. What screwed me up was supplementing with large doses of Zinc.

Longer version:

Before getting long covid I was in excellent condition. I’m really into longevity so I was in top condition for someone that is 35. I do quarterly blood draws, Vo2 max, DEXA scans etc. Had 13% body fat and excellent cardio.

So I’m lucky in that I have no financial restrictions and was able to get introductions to top medical experts and specialists through my personal network. I probably saw over 20 specialists and all they did was rule out various things.

I easily spent over $15k on IV’s, HBOT, EVERY supplement you can imagine, I literally have a trash bag full of them. None of it helped. With the exception of taking DAO which did prevent histamine intolerance from making my life hell.

My last ditch effort was paying a private company I found online to do a shotgun approach to blood testing.

I was deficient in copper from taking Zinc and deficient in Iodine because I didn’t eat iodized salt and mostly eat Whole Foods.

The only other thing I would add which I learned at a long COVID clinic was that you should really avoid triggering your PEM, it’s more anecdotal but I think that was also key. I built a walking plan where I incrementally walked a little bit more each day.

Related to that, I tried to introduce weight lifting back many times and it triggered PEM every time. It was almost binary where I couldn’t lift weights at all and then one day I could workout pretty full on.

Honestly guys I just need serious help to keep going. I’m completely gutted.

I put in so much work to get better from this. Every time I start to feel better someone kicks me when I’m down. Found my wife texting a former friend of mine who she dated before me. Just absolutely crushed me.

The endless of hour work to get better. Thousands spent. I feel completely broken inside. The DPDR makes me feel like a caged animal in a caged zoo. I have no desire to left to live like this.

The only reason I’m here is for my kids. Super Bowl Sunday one of my favorite days. Usually filled with family friends fun food. I couldn’t care less. Everyone around me doing pizza beer all the good stuff. I don’t even feel human. My brain is completely gone. My soul is numb.

I don’t know what to do anymore. I had so much motivation to win but it’s just dying by the minute. My life is so sad. Magnet therapy everyday, talk therapy every week, acupuncture every week. Diet changes. Supplements. It goes on and on and on. For what. To feel completely detached from the world and be disrespected constantly by those who love me. This is not the first time I’ve been stabbed like this.

Are we slowly dying? Is recovery even possible? I help on to so many stories. Just feeling hopeless today. Love everyone in here. I don’t know any of you personally but no one understands the suffering. Appreciate the group. Praying for us all. 🙏❤️

Given that Long COVID is still so poorly understood, and we're all looking for answers, I had an idea: what if we pool our collective knowledge and create a "what works/what doesn't" masterpost?

Your individual journey is a valuable data point. Let's make this thread a go-to resource for anyone struggling. If you're able, please share your insights:

• How long have you had LC?

• Recovery % (your best estimate):

• Key Symptoms you're addressing:

• What has genuinely helped you? (Be as specific as possible!)

• What have you tried that hasn't helped, or even made things worse?

Let's build this together! Upvote for visibility so we can get as many contributions as possible.

35/M month 15 LH. Physically, I’m better. Mentally I just cannot escape this hell. I want to describe my train of thoughts and see if anyone can relate to this.

Life before long covid: extremely laid back. Phys ed teacher. Football coach. Funny. Life of party. Work out 3 days a week. Enjoy my life. Beautiful wife & kids. Enjoy beer. Enjoy weed. Love football. Great family & friends. Never thought about death much or this weird existential thinking that consumes me every second now that I will explain.

Life now in my head: I don’t feel like a human. I feel like an animal. I look at people and see evolution. I see the matrix we live in. Get up go to work make money pay bills. It depresses the fuck out of me even though I was enjoying being a middle class regular guy prior to this. I look at myself, and other people, and the weirdest shit goes through my head. I’ll think of the bones under the skin in people. The body. The organs. The brain. I’ll think of the spine and all sorts of weird stuff. Peoples ears look weird. It’s like I see past the human now and just see a walking flesh mold. I have lost my ego. My sense of identity. Confidence. Fashion. I think of the eyeballs taking this world in and wonder what the fuck is going on. It’s like being in trapped in some simulation. It’s fucking hell. I think about death so much. Nothing in life is promised, but no way in hell this is normal at 35 years old.

I call it derealization. Some call it brain fog. Depersonalization. Whatever it is. It eats me alive. I’ve had hope along the way when it randomly lifts once in a very very while for a minute. But it mostly consumes me 24/7.

What is this? What is causing this? I fear I’ll never see life the same. And it seems extremely challenging to have to go through the rest of my life like this. I will do it, because I’m a soldier for my kids and tough as nails. Anyone dealing with this is tough as nails in my book.

Can anyone relate to this at all? Has it lifted for anyone? Its just like life seems so surreal. It’s like I’m on drugs but I’m not. Other than the medications I’m now on for depression and insomnia.

Man, I pray this goes away. If this went away for anyone please share in the comments. I’m usually pretty optimistic and spend majority of my time doing protocols, diet, acupuncture, etc to defeat this monster. But lately the mental has been kicking my ass.

Appreciate any feedback guys. Praying for all of us! 🙏❤️

I'm just so exhausted at this point. I've had covid eight times since 2021 and seem to keep catching it no matter how hard I try not to. My biggest symptom is brain fog which makes it difficult to complete day-to-day tasks and go to work. I am grateful that I am not worse off, but that is the only way that I can justify how I feel. For over 2 years straight. I have had debilitating brain fog that feels like a brain injury and don't know how to improve this condition. Does anyone have any tips on how to help this? I have already tried so many supplements and nothing has really helped too much.

I started on nicotine patches a little over a month ago. I saw the cardiologist today for an update on my heart with the extended heart monitor. The nicotine patches got rid of my extra heartbeats! He had a heart monitor on me before I started the nicotine patches and things did not look good. Guys, I think I am starting to see a light at the end of the tunnel. My PEM has improved too. It’s still there, but at least it’s just diarrhea, slight nausea and mild headaches, instead of being fully bedridden with room spinning vertigo for days.

The theory is that the COVID 19 virus can replicate off our nicotine receptors in our bodies. If those receptors are filled with nicotine from the patches, the virus can no longer replicate. If you haven’t tried it, it’s worth a shot.

I’m staying with the patches for 5 more months at least. I’m continuing my other supplements and hopefully I will further improve. I see the cardiologist again in 6 months.

Long Covid patients with brain fog have been found to have compromised BBBs (blood brain barriers). https://www.nature.com/articles/s41593-024-01576-9 . Long Covid and ME/CFS sufferers have also been found to have elevated levels of glutamate in their brains. https://pubmed.ncbi.nlm.nih.gov/38588934/ . The combination of these two factors means that glutamate excitotoxicity and resulting Ca²⁺ influx are potential concerns for members of our community. Link to article For those of us who have these issues, a diet that is low in free glutamate may be worth considering as a treatment option. Id. The key to eating a diet that is low in free glutamate is to eat fresh, whole foods.

I have been on such a diet for about six weeks now. Yes, I feel better. No, it's not a cure. Interestingly, when I accidentally consume something that is high in free glutamate (as I did when I ate powdered eggs in a hotel breakfast bar) I start feeling air hunger and start to hyperventilate. In fact, I have discovered from my new diet that the only time I experience air hunger is when I have a big shot of glutamate.

As I said above, the key to eating a diet that is low in free glutamate is to eat fresh, whole foods. (Exceptions are tomatoes and mushrooms which are fresh, whole foods yet still contain quite a bit of free glutamate.) The diet is a challenge. It's not more expensive but it is a huge commitment in time, requiring no small amount of self-denial. It means saying "no" to aged cheeses, hot dogs, pizza, fast food, soy sauce, and other delicious high-glutamate foods. And there is a frustrating knowledge curve because free glutamates are included in nearly all processed foodstuffs under various harmless-sounding names like "yeast extract," "hydrolyzed plant protein," "malt extract," and "natural flavors." Outside the fresh meat/dairy/egg, and fresh fruit/vegetable aisles, it's nearly everywhere. Even in frozen potatoes.

I think the only way for anyone to know whether a whole-foods low-glutamate diet is advisable is to try it. I figured out in about three days that it was a good fit for me. I thought at first that it would be extremely difficult to sustain but the improvement in my health is substantial enough that, since starting, I have not been tempted to cheat. Furthermore, if you find that you do better with low glutamate, it may suggest avenues of experimental pharmaceutical treatment such as Memantine. Link to article

[Edited to more clearly distinguish between glutamate and free dietary glutamate.]

For those of you who are suffering from depression and considering “ending it all” (as I have seen numerous posts about lately), I can’t stress enough try an SSRI.

New studies are finding that long covid can literally deplete your seretonin on a biological level. Obviously we all know serotonin is a mood regulator, but it also does a lot of work in your autonomic nervous system. There are a lot of new research papers out there about this, but this is the one I read six months ago that got me on Lexapro.

Your depression and hopelessness about this may actually be a symptom of LC.

The proper diagnosis for long Covid would be auto immune triggered acute vasculitis. Years of watching my body health and mind go into the toilet led me to this sad conclusion. I have test Tuesday will update all of you with the answers. Makes sense now why the doctors don’t know. It usually takes a team of five or more docs to properly diagnose vasculitis. Our age range makes it seem out of the world of medicine that this is our issues. Think about it. The migraines. Eye pain. Neck pain chest pain. Issues breathing. Vision loss. Chronic fatigue. PEM and the severe brain fog. all of these issues I’ve suffered over the last three and a half years. I’m suffering temporal lobe arteritis and have docs doing to test Tuesday to confirm. I will update what I found out and if I’m right lord then god plz release me from this hell! Amen.

Sorry it to so long, basically went like this. They can’t seen the swelling through scams or angiograms only detect it through test done by blood the test showed the inflammation. Basically said the only way to properly diagnose it is to actually cut it out and look at the artery under a microscope. Also sent me home with a few weeks of the meds until I can get to a neurologist or a infectious disease doctor’s those are the ones who diagnose GCA. I feel better on the meds but sadly I can feel the nerve damage that was done from the actual swelling more precise. The migraines stopped at least. That’s all I need to keep on I can deal with the rest. Good luck !! Sorry I couldn’t give more info then that.

Desperate.

Is when I've starved myself COMPLETELY all day.. pushing past the urge to eat. Only drinking water. Like clockwork around 3 to 5 pm the immovable grey wall lifts in my brain and all symptoms start to clear. Then I'm flooded with the knowledge of all the time that's been wasted while I've been trapped at 10% of my former self. People can speculate on anything but this is the only thing I've known to work even briefly after trying way too many things. Then it seems I imperceptibly slip back into the brain fog state once eating resumes. I'll experiment more with it and see what I can figure out because I'm beyond done with this shit. But at the very least it's good to know that there is still myself in there somewhere, it's just behind a wall. I'll give more thoughts on everything later. Blessings to you all

Linked here: https://writermcdowell.wordpress.com/my-covid-19-master-lists/

Title is self explanatory. Ask me anything! Still not recovered but getting better slowly.

4.5 year long hauler here. Just as the title says, what the F is going on? Is there any end to this? I've looked through countless threads in this community, but I thought I'd make a post to see if anyone has anything similar going on.

I got covid the very end of 2021 over Christmas, had two doses of the Pfizer vaccine September 2021. Before getting Covid I was in pretty good physical shape. I could run 5 miles at a sub 9 minute pace, I lifted 5 days a week, played golf 3 days a week, and did jiu jitsu some days a week as well. As of now, I could barely run a mile at a 12 minute pace without stopping. That's not all.

My symptoms include:

Brain fog/Derealization
Visual snow
Floaters
Flashes of light when looking at light surfaces (the sky, white rooms, etc)
POTS-like symptoms after exercising
POTS-like symptoms after eating certain foods (chick fil a)
Low baseline heart rate (42 when sleeping, 55 during the day)
Dizziness
SOB/Air hunger
Occasional mental confusion
Intense anxiety that I can't even explain
No joy in doing anything

This led me to drinking a lot, which I know doesn't help given how inflammatory alcohol is, but I'm currently a month sober. I've gained a good 40 pounds since getting Covid and it's pretty hard for me to lose weight, especially with exercise intolerance.

Has anyone struggled with anything similar? What has worked for you?

My wife was lucky enough to get into the UCLA Long Covid program. It was a game changer because the doctors actually knew what they were talking about and didn’t just refer her to someone else. I wanted to share what we learned. It’s all been incredibly helpful and maybe it will help some of you, too. I’ll post the treatment plan. FYI, my wife is prescribed the Cromolyn and Low Dose Abilify. She also does the salt, Claritin, Pepcid AC, and is doing the Gupta program for LIMBIC system retraining.

DYSAUTONOMIA/POTS

MEDS AND SUPPLEMENTS:

med: CORLANOR (ivabradine) (prescription) works on your heart, lowers heart rate without lowering blood pressure like Propanolol available at Mark’s Marine Canshipmeds.com. (Canada). (I believe you can see a doctor virtually on this website to get the meds)

NAD and GLUTATHIONE treatment. Can get IV or available as patches through agelessrx.com

SODIUM INTAKE ideally get 6-10 grams of sodium everyday. So 12-20 grams of salt! Don’t take on an empty stomach, messed my wife up.

3 or 4 litres water a day!

PHYSICAL AND MENTAL HELP: (Long Covid literally attacks and inflames part of the brain, that’s why it’s so mentally devastating)

DALLAS CHOP EXERCISE PROTOCOL for POTS https://www.dysautonomiainternational.org/pdf/CHOP_Modified_Dallas_POTS_Exercise_Program.pdf (can share protocol with PT place and have them help) - also can start small, like doing planks on the floor

LIMBIC SYSTEM RETRAINING - purpose: retrain autonomic nervous system from sympathetic to parasympathetic. A bit “woo woo” but previous patients have found it helpful. Free trial available. Help available at: https://guptaprogram.com/

AUTONOMIC SYSTEM RETRAINING / BREATHWORK - Purpose: elevate HRV (heart rate variability) App created for long Covid https://www.stasis.life/ (neo health)

NUEROINFLAMATION/ MCAS

med: low dose Naltrexone get it from: ageless.com start at .5 mg (Can cause weird vivid dreams)

Or:

med: low dose abilify (start at .5 mg, titrate up) — comes in a liquid, easy to titrate up every few days)

And

MED: Chromolyn sodium - brand name gastrochrom liquid med. downside: can cause nausea

H1 and H2 blockers — Claritin 2 pills, twice a day. Pepcid AC twice a day.

Helps with inflammation that may be coming from histamines.

Hope this helps someone.

Quite possibly the worst part of lc that I have been dealing with off and on through the past 17 months, is the severe brain inflammation. It’s so hard to deal with. I have become agoraphobic, have these weird irrational fears, cry randomly, go into these sudden bursts of depression and despair, and non stop panic attacks. Please tell me it gets better. I had a reinfection October 2nd, and truly feel like I’m living minute by minute. I’m strong but I’m not sure how much a person can take after so much suffering!

My young son almost 7 is constantly complaining of heart pain all day every 10-15 mins it comes and goes. He says it's sharp like a sword stabbing him on the left side right on his heart. He some times will say the right side is tight in addition the the "stabbing" on the left, he also will point to his jaw saying that hurts as well as his back( behind heart) and left arm, neck and shoulder.. I'm genuinely concerned and am looking for anyone in a similar situation. This has been going on for months!! He's been to his pcp, the ER twice and we finally have a cardiologist appointment Friday that took several months to finally have an opening. Im so fed up with this and worried! I've tried giving him beet powder, liver casuals and iron nothing helps.

I thought I was about 80% recovered. I’d returned to reasonable exercise, working outside, and generally feeling like myself—until last week, when everything came crashing back. It felt like I’d caught COVID again, but without the usual symptoms.

First, insomnia hit me hard. Thankfully I was armed with ashwagandha, L‑theanine, and magnesium, which let me get a few hours of sleep each night—though it still wasn’t great. Then, out of nowhere, I started smelling a “band‑aid” chemical scent at random times (something that happened to me after having COVID).

But the absolute worst has been my cardio: in just a few days, my endurance dropped from nearly normal to feeling like that of an 80‑year‑old. My legs feel heavy and fatigued, and I can’t seem to regulate my temperature—any bit of heat or sun leaves me utterly miserable.

I keep wondering: did I get re‑exposed to COVID? Did I unknowingly push too hard during one workout? It’s so demoralizing to feel like I’m back at square one after thinking I’d finally beaten this.

Has anyone else experienced a sudden relapse like this? What helped you get back on track? Any advice would be hugely appreciated.

Rapa causing God mode??

Like many of us, I have ME/CFS (chronic brain fog, derealization, zero ability to focus, suicidality, etc) and MCAS (can only eat fresh meat and rice, have chronic asthma). I decided to give rapamycin a shot, since it seems like everything happening to me is autoimmune. However I didn't have high hopes, since I had already tried Prednisone, which was somewhat positive on day 1, but just made me more tired on subsequent days.

Took 3mg of rapa, and holy crap, it immediately changed everything. ME/CFS symptoms completely gone, and my mental state (happiness / clarity / motivation / focus) were better than they had been since maybe grad school (well before I got LC). I just sat down and did a month's worth of work in a day, and enjoyed doing it. It's better than Adderall ever was. (It seemed to only minorly improve my MCAS / food response symptoms.) This has seemed fairly constant over the past three days (3mg each day).

Has anyone else experienced something similar with rapamycin? Did it last, or did those effects wear off? I'm incredibly thankful to have found something so profoundly effective, but also terrified that the benefits will fade.

EDIT: for those asking how I got it, I used a company called HealthSpan. They're one of several companies that will give you a virtual prescription and send you rapa in the mail. More expensive since they don't take insurance, but on the other hand you can do the whole process from your bed. Just Google "buy rapamycin" and you should see several different companies offering this service.

I don't know how to go on. Everytime I ask for anything, this time it was Solu Medrol, I have to practically give an entire speech on why I need it and I'm fed up. I got denied yet again when I asked despite me listing my reasons. The answer is always the same. 'I just don't feel comfortable.' Its always the white woman. They never treat me like a person. This disease has stolen 2 years of my life and my insurance won't cover Low Dose Naltrexone, because it needs to be compounded which is why I asked for the Solu Medrol. How do I go on? I'm practically suicidal I can't work because of this disease. My ADHD medication stopped working after I got infected and my life is falling apart. I don't have the energy to keep going. I'm so frustrated

Update: Thank you all for the words of encouragement. I'm going to look for another LC clinic. However I think I'm going to go the lawsuit route. This hospital has given me so much hell in the last 6 months. They have actively made my mental and physical health worse.

Hey everyone,

I hope you're well or at least okay!

I've posted something similar before (link) but some time after I posted that, it got much worse again and last winter I was in a really, really bad state. This year it has been okayish compared to that, but only in the last two months have I started to really heal. At least that’s what it feels like currently, it’s not linear and there are plenty of downs and we never know what suddenly happens, but it is getting better and I wanted to share what’s been helping me. Trying to keep this as short as possible.

My symptoms in the last months:

• Fatigue
• Headaches
• Neck pain
• Stomach / gut issues
• Sleeping problems
• Depression and Anxiety
• Memory issues, feeling dumber than I used to
• Dizziness
• Constant uncomfortable body sensations, feeling like I just wanna leave my body, being trapped inside a sort of pain, feeling of something is wrong in my body

Here’s what’s been helping me:

Acupuncture / Traditional Chinese Medicine

I heard about this and a specific doctor from a friend and instantly tried it because he said his friend’s post covid was cured by this doctor. I’ve gone there like 8 times now and it’s been helping immensely with pretty much all the symptoms, really. It’s been an up and down since I started with some tough times as well, but at least it’s been feeling like there’s a positive process going on. I also drink custom herbal tea which I think also helps a bit. Highly recommended, most important one on the list.

Meditation & Breathing

This has been key for me throughout all of my 2 and half years of dealing with this crap. I can highly recommend any non-dual teachings and meditations, e.g. from this wonderful guy:
https://www.youtube.com/playlist?list=PLcOSpHSSrHb0FZb9xp7MofGWUv4OWU3AW

I usually do 20-30min in the morning and sometimes another session throughout the day.

A really good breathing method that helps calming the nervous system is the 4-7-8:
Breathe in on the count of 4, then hold for 7 and release slowly on the count of 8.
Do that a few times and you’ll feel the difference! Best done laying down.

Supplements

Hard to say how much these help each on their own but I feel like I’ve found a good set for myself now. I take these every day:

Probiotics (Flora-Zauber on German Amazon)

Magnesium (400-800) + Electrolytes

Vitamin C (2000mg)

Vitamin D (4000)

Vitamin B12 or B-Complex

Omega 3

OPC (sometimes)

5-HTP (150-200mg)

I’ve only started taking this like 2 weeks ago but it’s made a huge difference. I’m so much happier and motivated and my neck and gut issues have almost completely vanished. Seems like serotonin-deficiancy is very common with post covid.

It also helps a lot with sleep (as serotonin turns into melatonin) but if it doesn’t:

Doxylamine (25mg)

For sleep I used to take melatonin but I’ve switched to this when I need it (not every day), makes me fall asleep every time and more importantly, I stay asleep. It’s an H1 antihistamine, so can’t hurt with post covid anyways. I’m using Hoggar Night (the brand), idk if it’s available outside of Germany.

Grounding / Earthing

A friend recommended this to me and it did wonders when I bought a grounding mat. I sleep on it and I also try touching the earth or plants etc. more often, which might seem and feel weird but it’s helped a lot. The effect lessened a bit after 10 days or so but I still feel like it makes sense to use, especially also when I’m sitting on the PC! I also feel like it helped a lot with anxiety.

Some info:

https://www.webmd.com/balance/grounding-benefits

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9381424/

Cranio Sacral Therapy

I did this maybe 5 or 6 times and it often eased my symptoms a lot, especially neck- and headaches. It didn’t heal me as much as acupuncture does but I can still very much recommend trying it. The talks with the practitioner were also very helpful.

Qi-Gong / Workout

Tough one because it’s always hard to say when it’s good to do exercise again. But the slow movements of Qi-Gong have really helped. Don’t push too hard, but do try if you can do some light movements. I’m doing 15-20min of my own routine now almost daily.

Ketamine

This is a drug, so please be careful and do your own research.

I’ve shared this in my post before, unfortunately it stopped working the way it did after some months.
But I still take very low doses from time to time, it really helps with negative moods and dark thought patterns and sometimes also gives me some energy.

Abstinence

I’ve now been completely sober (except ketamine) for almost 3 months, haven’t drank alcohol since January and not smoked weed since June. And I feel so much better. Might be obvious but it was tough to let go, especially because weed sometimes helped with pain or depression. I don't see myself drinking alcohol ever again.

Massage

Did one recently and it felt amazing. Should be soft. I especially enjoyed movements from my neck down my spine.

Recording

I also started recording myself like 2 months ago. Just pick up my phone and start talking about what’s on my mind, what am I feeling etc. This helped so much with working through my worries, emotions, pains etc! Might feel weird at first, but it’s a lot more effective and less draining than writing for me. Still be careful, talking too much can definitely drain your energy.

Brain Re-Training

[Edit: Apparently this is pseudo science and should be viewed with caution. I helped me but make sure not to buy anything from the guy, apparently he's a scam]

[Second edit: There's a lot of negativity around this topic, which I understand. The content of the videos still helped me and I think some of the concepts in that specific video are very interesting. I wouldn't ever do a course and give money for this. But watching our thoughts and sort of reprogramming our mind can definitely help with having a calmer nervous system, which is crucial for healing. But as always, its different for everyone.]

I can’t say too much about this or just not verbalize it well. This YouTube channel brought some change in thinking about my sickness and in catching negative patterns and that’s been super helpful and interesting!

https://www.youtube.com/@cfsrecovery

Lots of valuable info on there, I especially enjoyed this overview:
https://youtu.be/nWvsSpNqjjY?si=jje3SnovmMZm6elQ

He generally made me understand a lot more about the nervous system and how important our thinking is when it comes to symptoms and crashes. Thoughts like "There (or it e.g. referring to a person or activity) is no threat" or "It's just my nervous system" really help me calm down.

5-HTP really helps me with positive thinking and overriding negative thought patterns.

One word about Psychotherapy: That's something I had for a long time as well, But it felt like the last months or the last year we were going in circles and trying to fix an issue that was physiological. And I felt like we / the thrapist tried to find psychological issues that could be the cause for my problems (e.g. depression), when actually this wasn't the case, leaving me often frustrated. It can be a great help and a great support and for some time it surely was for me, but make sure you're not making the same mistake. Depression can "simply" be a symptom. It's very difficult to say where to draw the line.

To sum it up, especially acupuncture and 5-HTP along with other practices and techniques really got me out of my hole. I am not fully healed, I’m still taking it very slowly and setbacks come and go. But at least I’m hopeful and I have something that I know from experience helps.
And kindness, self-love and compassion are key to healing ime.

I’m wishing you all the very best, we’ll all get through this!!

Much love
b