r/covidlonghaulers

Honestly don’t know how much longer I can do this. Convinced I have permanent brain damage. I’m 21 and I feel totally empty. I don’t enjoy things anymore and my brain doesn’t work the same way. I used to play guitar religiously even with my long covid symptoms but not anymore. Has anyone had their anhedonia improve?

Folks, almost 500 people have signed up in like what 3 days? lets get them to 5000 next to help progress the research and diagnostics of long covid --> https://join.muno.bio/

Very interesting approach to subtyping and diagnosing long covid. Hope they will figure it out for all of us....

Some details, I’m 30 and as far as I’m aware- I caught the delta variant of Covid in Dec of 2021 and I believe that to be the one and only time I caught Covid. For the last few years, I’ve dealt with cognitive issues like tremors in my muscles when I stand like in my legs or arms. I will bite down on my cheek or tongue by accident when chewing food a lot but it comes and goes (like I’ll have a week where I keep doing it and then followed by like a month of not doing it). I’ve had brain fog too and have developed extreme anhedonia in the last year. I have confirmed and been diagnosed with ME/CFS, POTS, and Fibromyalgia.

The last month- my cognitive issues have gotten considerably worse. And I am nearly bed bound so I don’t leave the house- haven’t been sick with so much as a cold in over a year. I have no idea wtf has changed but I am experiencing a huge change in cognitive stuff lately: my dreams have been feeling consistent and real enough that I have been having a hard time differentiating between reality and the dreams upon waking up and it takes me a bit to center myself. I have been having behavioral changes… like typically I am anti social but all I want to do is talk to people lately and I’m energetic about it. My memory is non existent like short term? Lol I do not remember jack shit and I’ve had repeated conversations without realizing it. I have a really hard time speaking in the sense of that I keep stuttering with words while my brain is “buffering” on finding words and I can’t always figure out what words to say even though I know what I’m trying to say. I’ve gotten lost while navigating. My dyslexia has gotten worse. I’ve had persistent headaches but I’ve gotten them nearly every day for the past month now.

I’ve just had a CT scan done last week and MRI done today and both with and without contrast. Both results came back with no abnormalities in my brain apparently. I know I’m not psyching myself out into experiencing these symptoms. I have no idea wtf to do next. Any other test recommendations? Also… anyone else experience something similar? Like I know something is up with me- but I feel like I’m going crazy with these test results showing my head is fine!

I’ve had Covid twice and during which I was not sexually active much, I was single, and I’m not one to sleep around much if I’m not in a committed relationship with someone. I was always having high sexual functions in my 20s before Covid … after Covid I had sex a few times, but not enough to where I was able to identify this new problem that’s emerging for men, I’m now in a relationship and having been sexual active often with my partner I’ve noticed the sensitivity has reduced to nearly half in my penis… nothing else has changed in my life or lifestyle other then Covid so I don’t think there’s any other culprit… does anyone else have the same issue and are there any cures ? I feel so terrible with my partner … 20-30% I can’t finish due to sensitivity problems …. The other 70% I can finish after I’ve absolutely destroyed her and pounded her for 10 minutes straight … I used to be around the 10 minute mark having sex, then could choose to finish or continue … now it’s like 45 minutes to an hour sometimes more and I can tell my partner wants to relax and stop having me pound her… I really need a solution to this problem if anyone knows … I read some guy started putting coconut oil on his penis and it returned a lot of sensitivity , not sure how that would work but I’ll give it a shot , thanks

This post if for anyone reading who is a spouse, or caretaker of someone dealing with long covid. I am wondering how you handle it all? How do you cope knowing you can’t physically help your loved one? I’m going on 18 months of my husband dealing with this horrible bullshit. No answers from doctor visit after doctor visit and test after test. Feel lost, hopeless and unhelpful. Know I need to take care of myself in this process but this all is just ridiculous and infuriating…

On top of it all no accountability anywhere still for how it all started.

This week I'm getting a subcutaneous immunoglobulin infusion for the first time in my life. It's a very involved process to have gotten approval to use this and to prepare for the infusion itself. There has been research done that shows that IG infusions have helped a number of long covid patients experiencing neuropathy/neurological related symptoms.

My primary symptoms involve the following:

• Complete loss taste and smell
• Leg tingling/tremors
• Intermittent pin/needles sensations throughout the body (this has recently evolved in my legs to feel like sometimes water is running down my legs, or as though there is a burst of warmth travelling down a leg and into my foot)
• Muscle twitches/spasms
• General numbness throughout the body with a degraded sense of touch and temperature
• Anorgasmia (ability to ejaculate but total loss of orgasm sensation alongside generla genital numbness)

A neurologist recommended this treatment given recent literature on this and I'm hoping it can help as symptoms have only stayed the same or gotten worse over time.

I spent a year and a half searching for answers as to why this was happening, all the tests came back clean: MRIs, Nerve Conductivity Tests, Blood Work, etc. It's only after I met with a long-covid focused neurologist that ran specific tests could I point to anything being wrong. Those tests were for neruofilament light chains and Igg antibodies, both of which were slightly elevated and informed the recommendation in my situation to pursue IG infusions.

I will share my experience with how it goes - I'm quite nervous about it to be honest.

The same neurologist also advised that for my loss of taste and smell I should pursue platelet rich plasma injections in my olfactory cleft - recent research has shown positive results here for patients as well and I will be pursuing this after I get into a rhythm with the IG infusions.

Hoping for the best on both fronts.

5+ yrs in and had the worst episode of POTS yet and after all this time I had to convince my family I wasn’t joking. It seems on a daily basis I’m trying to regulate and handle my symptoms as best I can while still having to explain myself to my family that still look at me as if I’m making this up. What I want more than anything is to have a body that can regulate my temperature and not get overheated which is a huge trigger for a POTS episode for me. A brain that isn’t foggy , sluggish, out of focus or just plain dull and to feel normal . No headaches would be great too. Forgive me if I sound ungrateful but I’m tired .

I do want to prefix this by saying that I know it's not a cure, and judging by other posts here, it doesn't work for everybody, but wow, this stuff has made me improve by 85-90%.

I started taking this just under a month ago for weight loss. Was previously on Saxenda for about a year, which did a little for weight loss and nothing for anything else, then it stopped working completely. I had got up to 150kg and so I knew I needed to do something.

My main LC symptoms were severe fatigue (with crashes that could go on for weeks), nausea and migraines. I was primarily housebound, but would go into work for 5-6 hours a week. Generally was stuck around 1,000-2,000 steps a day.

I started taking Mounjaro, and 2ish days after the first dose, I woke up and felt... Normal. Just like I did before I got sick. I wasn't exhausted, I wasn't nauseous and my head wasn't sore... Huh. The weirdest thing of all, was that I had energy. Like, I was able (and wanted) to go and do things.

It's now been almost 4 weeks and I do 5,000-10,000 steps a day, I've been going out places, back to work almost full time and I haven't had a single crash in that entire month. It's also working great for weight loss (the added activity helps I'm sure!)

As I said though, I don't think it's a cure. I do find, that especially at night or in the morning, I'm often run down (runny nose and going hot or cold) and I do sometimes feel like I'm getting a migraine but it never comes. I'm assuming this medicine is suppressing this somehow, and that I'll need to stay on it forever to feel like this, but right now, it's an amazing step forward.

I'd also like to add, that I reckon a key to a lot of this for me is in the gut. If I don't eat (or eat very little) during the day, I feel even better. I'm being smart and sticking to 1,800+ calories - because who wants scurvy, but I've found a couple of protein coffees can sort me out for an entire day of feeling amazing.

Hey all,

I’ve been unwell for 3 years now since my late teens. I’m in the UK so have had to turn to private with limited funds. I believe most of my symptoms are MCAS. Headaches, nausea, fatigue, stomach pain, diarrhoea, constipation, acid reflux, dizziness etc. I’m currently on a H1 and H2 blocker by my MCAS doc, but my diet is still extremely limited. I’m really scared to be honest, I just feel like no one knows how to help me. I’ve tried so many things (like vitamins, mast cell stabilisers, LDN) but I react to everything and my symptoms MASSIVELY flare. I just don’t know who to turn to. Surely there must be a way to get a better quality of life, even if only slightly.

Thanks

Just a warning, this is long!

My primary LC symptoms have been MCAS and brain fog, which came out of nowhere.  I’ve never even had seasonal allergies that bothered me before  Since LC, I have to take daily h1 and h2 blockers *or else*.

 

It took several months to figure out that I had long-COVID, and then my doctor confirmed.  When I went looking for solutions, of course there wasn’t a lot of definitive info out there, as it’s still being researched.  One thing I kept asking myself, “WHAT is this causing to happen in my body??” I’ve had other chronic health issues before, but I always understood the organ, the process, the mechanism by which the issue was occurring.  MCAS is so strange, allergies feel abstract, and I couldn’t comprehend where in my body things were going wrong, or how.  It didn’t help that brain fog due to excess histamine was my #1 most debilitating symptom. In the beginning, I’d lose myself for weeks at a time, feeling like I had Alzheimer’s.  I would sleep a full night, wake up and eat breakfast, and then immediately fall back to sleep for half the day.  I didn’t know at the time that histamine overload and mast cell degranulation were causing this.

 

I stabilized my MCAS symptoms completely in one month, about 6-7 months into LC. I went from being totally non-functional, bad allergy symptoms all day every day, and having an angry, painful, inflamed rash across my whole neck and chest . . . to being NORMAL (so long as I took all my supplements religiously and ate low-histamine). In one month, my rash was gone, my brain fog was almost gone, and my allergy symptoms were under control.  That being said, I still couldn’t work out really hard, skip meals, or endure a lot of stress, because the stress would trigger my mast cells. I would end up with too much histamine again.  So I was stable, but had a lot to manage to stay that way.

 

I learned how to stabilize by watching all the MCAS videos by Dr. Paul Anderson on YouTube, where he explains what’s happening and what supports these systems need to function again.  He has an MCAS playlist.  I watched every video and wrote down as much as I could, then I organized my notes to help me solidify my understanding.  I’m not affiliated in any way, I just recommend him because without this information, I would still be lost and horribly sick, a year later.  I have a GP, but he’s not an LC specialist.  My understanding is that a lot of LC specialists don’t have many definitive answers either.  Through tests with my doctor, I also found out I had low B12 and low ferrous iron. 

 

STABILIZING MCAS

Here are the supplements/meds I *initially* took to stabilize MCAS in a month.  These carried me until the 1-year mark with long-COVID:

·       Allegra – 1 24-hour pill 1st thing in a.m. on empty stomach

·       Quercetin – 500mg, twice daily

·       Famotidine – 20 mg, twice daily

·       Ferrous Iron – 65 mg, once daily

·       Glycine – 3,000 mg, at night

·       L-theanine – 200 mg, twice daily

·       Magtein – 6,000 mg, at night

·       Zinc & Copper – 15mg zinc / 1 mg copper, 1 cap in morning

·       P-5-P (active B6) – 100 mg, in morning

·       Vitamin C – 3,500 mg daily (high dose makes a huge positive difference for me with histamine overload.  Somehow it keeps the histamine processing out.  I forgot it a few times, and never will again)

·       Vitamin D & K2 – 5,000 IU Vit D / 90 mcg K2, 1 tablet every other day

·       Omega 3 Fish Oil – 2,000 mg, twice daily

·       Riboflavin (B2) – 25 mg, in morning

·       Niacinamide (B3) – 500 mg daily in p.m.

·       Benfotiamine (active B1) – 100 mg, in morning

·       Alpha Lipoic Acid – 600 mg, in morning

·       HistaminX probiotics – 1 cap daily in morning

·       Methylfolate & methyl B12 – 1 dissolvable tablet daily in a.m.

·       Pantothenic Acid (B5) – 4,000 mg daily (high dose here makes a huge positive difference as well.  Also forgot this a couple of times, and never will again)

·       Rutin – 450 mg, in morning

 

I was on this routine for 6 months.  When I hit my 1-year LC mark, I started to have vascular symptoms (chilblains type stuff), neuropathy, and heart palpitations.  I realized that the low-histamine diet was causing malnutrition.  Especially because some days I would just eat potato chips and that’s all, LOL.  I was so SICK of having to think about what foods I couldn’t eat, so I was eating only a few foods.

 

Around this time, I also realized that I had a bad yeast infection and likely have a permeable gut + imbalanced microbiome (have had the signs for a long time).  I’ve had candida issues before, so I knew exactly what to do: I mapped out a hybrid anti-candida + low-histamine diet, and I went back over all my supplements to see if I needed to add or remove anything.

 

UPDATED PLAN AS OF 3/16/26

My food plan now is that I eat two larger meals per day. All my food is divvied and frozen, as soon as I get home from the grocery store.  Each meal, I have a large portion of various roasted veggies (at least 6 types per meal), healthy fats, and some kind of ground meat. I have texture issues with meat, so ground is the only kind I can stomach daily.

 

Here’s my anti-candida + low-histamine foods list:

MEATS:

• Ground chicken

• Ground turkey

• Ground beef

• Ground lamb

• Ground bison

(I cook these in the air fryer now, so I don't have to thaw them first, which means lower histamine.  The air fryer cooks meat from frozen)

 

FROZEN VEGGIES: 

• Carrots

• Okra

• Green beans

• Cauliflower

• Asparagus

• Artichoke hearts

• Brussels sprouts

---

FRESH VEGGIES (TO PREP & FREEZE)

• Zucchini

• Shallots 

• Rutabaga

• Ginger root

 

• Canned grilled Chikadiki green olives (TJ's) – These are preserved in olive oil (not vinegar), and I don’t seem to react to them

 

FRUITS 

• Blueberries

• Raspberries

• Acai berries

 

FATS 

• Olive oil 

• Avocado oil

• Ghee

 

GRAINS 

• Buckwheat crackers (always soaked/dipped in olive oil before eating, to add fat and help my body process)

 

TEAS 

• Marshmallow root

• Ginger root tea

• Rooibos tea

 

UPDATED SUPPLEMENTS

·       Allegra – 1 24-hour pill 1st thing in a.m. on empty stomach

·       Quercetin – 500mg, twice daily

·       Famotidine – 20 mg, twice daily

·       Glycine – 3,000 mg, at night

·       L-theanine – 200 mg, twice daily

·       Magtein – 6,000 mg, at night

·       Vitamin C – 3,500 mg daily

·       Vitamin D & K2 – 5,000 IU Vit D / 90 mcg K2, 1 tablet every other day

·       Omega 3 Fish Oil – 2,000 mg, twice daily

·       Riboflavin (B2) – 25 mg, in morning

·       Niacinamide (B3) – 500 mg daily in p.m.

·       Benfotiamine (active B1) – 100 mg, in morning

·       Alpha Lipoic Acid – 600 mg, in morning

·       HistaminX probiotics – 1 cap daily in morning

·       Pantothenic Acid (B5) – 4,000 mg daily

·       Rutin – 450 mg, in morning

----- ADDED -----

·       Luteolin / PEA – Luteolin 100 mg / PEA 1300 mg, in morning

·       Iron Bisglycinate (Active iron, easier to absorb than ferrous iron. I do feel much less wilty inside, since a few weeks after starting this)

·       Zinc Carnosine (excellent for gut repair; should be taken on an empty stomach)

·       Glutamine & P-5-P

 

Glutamine & P-5-P, as a combo, need their own paragraph.  Glutamine is a huge help for rebuilding the gut, because it’s the main fuel source for intestinal cells (enterocytes).  It promotes rapid repair and regeneration of the gut lining.  But what I didn’t expect it to do was give me my old brain back.  I’d also been dealing with pretty severe depression and suicidal ideation from general overwhelm and hopelessness.  Glutamine is an amino acid, so it doesn’t have to build up in the system (like iron or vitamin D) to see results.  It starts working within a couple hours of taking it. 

IMPORTANT NOTE: The body converts glutamine either to glutaMATE (which causes anxiety) or to GABA (which is a calming chemical).  In order to help it convert to GABA instead of glutamate, you want to always take P-5-P (active B6) FIRST, right before taking the glutamine.  I always take my P-5-P + glutamine on an empty stomach as well, just so they're not competing with food.

 

RESULTS SO FAR

I’ve been on this updated food/supplement plan for 35 days. I’ve seen huge improvements, even though I’ve also been detoxing.  The first week of detox was the worst, but then it’s been steadily better.  I’ve had two days in this time where I felt better than I did even before long-COVID (because I’m getting nutrients consistently, and I’m eating extremely clean).  My brain was fantastic, my energy was high, I was super productive, happy, creative.  Even in such a short time, my digestion is the best it’s *ever* been, eating this way. 

 

 

What’s gone in 35 days:

·       Depression

·       Suicidal ideation

·       Heart palpitations

·       Vascular symptoms

·       Neuropathy (zapping / shock feeling in my nerves)

·       Inability to get myself to do basic tasks because everything felt like too much

·       Wilty feeling from low iron

·       Digestive upset, including gas, bloating, and pain

 

What’s improved:

·       My mood is consistently positive, and I handle stress much better (thank the GABA gods). The first time I noticed was when I was feeling anxious, and my inner voice said, “You could just *not* be anxious.” It was like my brain went, “Oh, yeah, that sounds like a better option.” The anxiety just goes away when I decide I don’t want it?!

·       Hair and nails are now growing strong and fast

·       My facial skin broke out during detox, but it’s healing now and is starting to look healthy and glowy

·       Brain fog is only once a week maybe now, when I’ve eaten something that sat out longer than I realized.  But this is so much better than all day every day, or even every few days.  The brain fog is mostly mild now, and I can usually function through (including writing or creative projects). 

·       The first couple weeks of the detox, the skin on my chest and backs of my hands was extremely dry, and my mast cells were acting up there.  But they’ve since settled down a lot. My mast cells are less reactive now than they were during the detox and before.

 

What’s left to do:

·       Continue healing my gut and rebalancing microbiome (to fully address permeable gut, candida, and resolve allergies/MCAS). I’m still religiously taking all the supplements, and I will be on this food plan for 6-12 months at least. 

·       Stay on this diet long-term, by choice.  I don’t want gut issues again, and I like what I’m eating. Eventually, I will reintroduce foods and eat more of a Mediterranean diet.

·       Antivirals eventually (working with my doctor to address remaining spike proteins)

 

I *think* this is everything.  There could be more I’m forgetting.  It’s been a hell of a thing having long-COVID, but I’ve learned a lot, and I am doing everything I can to come out healthier on the other side. I hope this helps someone!

26/F, almost 7 months in, mainly debilitating POTS symptoms that cause insane fatigue even with compression, increased salt, whatever trick in the book and 3 days ago I was finally put on 2,5mg bisoprolol and I feel like I’m getting crumbs of my life back.

I can stand up without feeling like I’m dying, I can do chores without having to pay back physically later, today I handled 2 appointments, one of them quite demanding, public transport, went to a store and had breakfast in a cafe. Minimal exhaustion towards the evening now. A week ago it took me more than 24h to recover from 10mins of seated showering. Just because of one small pill.

I’m still careful, trying to grasp my new threshold with this without over-exerting but this is the first time since I’ve gotten sick where I feel genuine hope and can see myself eventually getting over it.

I just wanted to share this joy with you guys! I don’t think I would’ve been able to do all the research, get all the knowledge on this condition and grow the guts to advocate for myself in front of doctors if it wasn’t for everyone here sharing their own stories and experiences.

How common is bad things ( Cfs, Heart attack , stroke, gi problems etc) occurring 3-4 months after recovering from Covid? In other words you think you are recovered , but the bottom falls out 3-4 months later. Thanks.

Been long hauling since Oct 2021, this is one of the symptoms that really bothers me the most, I also have blurry vision, off balance feeling, vertigo, MCAS-like symptoms, tremors, really bad anxiety, but anyone else experiencing similar? And like never ending headache that sometimes goes away but always comes back.

Forgot to mention the weird crancky, buzzing sound at the back of my neck or ear. Idk it’s all so confusing to me.

If anybody out there feels like they have concrete in their limbs and even the rest of their body like me do you take any supplements that fix it let me know. I read online it's mitochondrial dysfunction and I read coq10 and a few more but I'd love to know of anybody tried it what brands they use and how long till it started to work I've had this for a few years I also have another autoimmune disorder and none of my immune drugs are working for me 18 months in total even IVIG treatment blood infusions aren't working I can't believe it.

I need some positivity right now because I honestly feel like I’m at my limit.

I’ve been going through a very severe and long period after many crashes. At the beginning I didn’t understand what was happening to my body. I pushed myself a lot, thinking it was just stress or anxiety, but I was feeling constant high pulse, extreme fatigue, and something that felt deeply wrong in my body.

Because I didn’t understand it at the time, I kept going until I basically crashed myself into a much more severe state. Now I’ve been stuck in this for months.

Right now I’m dealing with:

- very severe crash state

- hyperarousal / constant fight-or-flight feeling

- insomnia (I barely sleep at all)

- extreme sensitivity to light, sound, screens (even phone is hard)

- strong overthinking and anxiety loops

- weight loss and difficulty eating regularly

I also went through benzodiazepines before and tried tapering, which made things even more complicated and difficult emotionally and physically.

On top of that, my home situation is very stressful. My mother is very unstable emotionally, there is constant arguing and tension, and I don’t really feel supported or understood. It feels like everything I experience is dismissed or misunderstood, which makes me feel even more isolated.

Because of all this, I’ve been in a state where I can barely function. I struggle with basic things like showering, eating, or even being on my phone. I feel like I’m constantly overwhelmed and my nervous system never switches off.

I also feel a lot of shame about how I ended up here, because I tried to explain something was wrong early on, but I wasn’t believed. Now I feel like I lost control of everything and I don’t know how to get back.

I’ve had moments where I felt like giving up completely, and that scares me. I don’t want to be in that place, but the mental exhaustion is very real.

I’m not really looking for medical advice. I just need some kindness, hope, or stories from people who went through something similar and managed to stabilize or recover at least a bit.

Right now I just feel very lost and exhausted, and I really need some positivity or reassurance that this can get better in some way.

Thank you for reading.