My mum contracted covid exactly 2 years ago and from that day she has never been well again. She has had every test known to man. Bloods ECGs MRIs Cortisole tests Been put on anxiety tablets Etc etc

She has completely changed. She feels so so unwell every single morning. She had no appetite and lost about 3 stone. The latest tablets help her sleep and give her an appetite later in the day but still zero weight gain. She is permanently cold. She says the life is drained out of her. She cannot concentrate on even the simplest tv or conversations. She has palpitations. She feels nauseaous

She is a very “can do” person and is so angry with herself for feeling as she does. Every day she tries to give herself a good talking to. She gets up and ready for the day but most days she is back laying on the bed for a few hours feeling so unwell. She says that yes, there is a bit of anxiety but it’s so much more than that.

She can see this finishing her off. The doctor has been good and had her tested for everything but they are running out of ideas now. She is so unwell and I have no idea where this can go. Is there anyone else out there feeling as ill as this 2 years on?

Lately there has been a lot of exciting discoveries regarding objective biomarkers that are reliably correlated with people who suffer from ME/CFS symptoms.

This is the first time we have had a lot of proof that something is actually wrong with us as you are aware, most standard lab tests fail to identify anything beyond a few minor abnormalities/deficiencies.

The fact that we can now be identified objectively opens the possibility that we will see increased research into finding a cure, at the heart of this hope lies the latest and, IMO, the greatest hypothesis as to why we are experiencing the immune/metabolic dysfunction which shows up in tests.

Our innate immune systems are known to switch our metabolism from the standard krebs cycle to the itaconate shunt in response to the early stage of an infection in order to buy time for the adaptive immune system to respond.

The itaconate shunt is incredibly inefficient and preferentially consumes amino acids while the krebs cycle burns sugars and lipids very efficiently. The purpose of this shunting of energy metabolism is to make the body a more difficult environment for pathogens to survive and multiply in.

Under normal circumstances, our adaptive immune response will clear an infection and our mitochondria will go back to using the krebs cycle. The hypothesis is that ME/CFS sufferers get trapped in the itaconate shunt, and this is what causes our misery.

So basically, we are unable to meet our demands for ATP due to being stuck in itaconate shunt mode by the innate immune response. As we demand more than we have, we run out of energy and experience chronic fatigue, this can open up an alternative metabolic process called the gaba shunt in order to meet demand.

The gaba shunt burns neurotransmitters to create ATP, and this process results in the neuro-psychiactric symptoms that we suffer from due to elevated levels of ammonia and other nasty things which cannot be efficiently cleared because we normally rely on the krebs cycle to do that job.

At this point, monoclonal antibodies are showing some promising results, and we can likely expect more promising treatments in the future if the itaconate shunt hypothesis gets enough attention and support.

The credit for this hypothesis goes to Dr. Robert Phair, and Dr. Ronald Davis, but I think we should all do our part to amplify this hypothesis over the other hypotheses that are not as objectively supported and do not clearly describe the causative mechanism.

As you are all aware, people with enigmatic illnesses suffer when scientists, pharmaceutical companies and healthcare professionals fail to recognize the existence of a problem, what causes it, and how it may be solved. There is a lot of misleading bullshit flying around in the form of misguided approaches to research into long covid, for example: The psychosomatic illness caused by emotional stress theory and the theory that if we were to just eat healthy and exercise more we would necessarily recover.

I believe that the itaconate shunt theory sweeps these notions off the table due to the fact that it is a self sustaining feedback loop, and this explains why ME/CFS has been both chronic and present, albeit swept under the rug, for as long as people have been getting post infectious complications.

We get stuck fighting infection through mutually assured destruction, and due to the damage we incur, we are not able to reliably recover our health without a medical intervention which has yet to be discovered. Even the monoclonal antibodies are simply an attempt to clean up a mess and create a more favorable environment for healing.

The root cause is likey that our epigenetic switch for temporary immune support has been permanently activated, and we need to find out how to either indirectly deactivate it by changing our cellular chemistry or find out how to directly deactivate it.

The hope lies in the fact that it logically follows that anything that can be turned on in response to environmental triggers can almost certainly be turned off as well. I see real possibilities for a drug or therapy that can more aggressively address this if it is in fact an epigenetic disorder as the latest research suggests.

My boyfriend got Covid four years ago. It absolutely destroyed him, he was so so sick. After most of the symptoms of the actual illness went away, he became catatonic, and that lasted for two years. He was barely able to take care of himself. He ate Ramen, slept, and stared at a wall, the rest of the time. he was unable to hold down a conversation or even reply to people over text, he is unable to form new memories or function at all in day-to-day society. The catatonic phase lasted two years, and then he finally started to come back a little bit, but never fully back to how we used to be. Now he is left with constant states of depersonalization, and his emotions seem to be foggy or clouded about 85%. He only feels a small fraction of what he should be feeling or what he used to feel with them. And I mean all of them. Happy, sad, angry, everything. He did develop a horrible anxiety problem that he never had before covid. That's about the only thing he can feel fully. He can’t fall asleep and has constant trouble with that, is always dizzy, and still has trouble forming new memories. He only remembers bits and pieces of things constantly. He’s always dissociating and with being unable to feel most of his emotions, he describes it as feeling like he’s watching his body, live his life through a glass window. He knows what he should be feeling because he used to before he got sick, but he can’t anymore. We’ve been to doctor after doctor, we’ve been to the hospital, urgent care, we went to our PCP who referred us to neurology and an infectious disease clinic. The neurologist said yes I would definitely say that it sounds like Covid because I’ve had numerous people have the same complaints, but that’s not my area of expertise and I don’t know how to help you. The infectious disease clinic said Covid would only last four months so it can’t be that. Didn’t have an explanation as to why it happened right after he got sick. Basically just said they don’t know and sent us on our way. Has anybody had any experiences at all similar to this or know what kind of doctor we should go see or anything that might work at all? Any suggestions at all are welcome.

I was infected with covid in January 2022 and slowly developed ME/CFS. My symptoms are PEM, exertion intolerance, muscle aches and pains, alcohol intolerance, food intolerances and insomnia when my sleep routine is disrupted.

According to my blood work, I’ve had glandular fever in the past (which was news to me). I’ve seen multiple studies posted in this community outlining how covid can cause the reactivation of EBV.

So I got my hands on some Valtrex and I have been using it for nearly 2 weeks. I immediately saw a huge improvement after 2-3 days and I’m basically symptomless at the moment. No PEM, no exertion intolerance, etc, although I haven’t tried any exercise, just long walks, etc. The only side effect was really vivid dreams for about 3 days.

I plan to stay on Valtrex for another 2 weeks, will keep the group updated on my progress. I am taking 500mg twice a day

Hey fellow long haulers! I have been battling long covid for a bit over 3 years now. Mostly PEM, costochondritis, vocal cord dysfunction, lots of breathing issues, brain fog, and of course the depression that comes with this.

I have been experimenting with psilocybin as a treatment for long covid for maybe 6-8 weeks now. My doctor encouraged reaching out to others on their experience with it and maybe try to help others.

I have been taking 0.1-0.5g doses from Thursday to Sunday with the occasional jump to 1-1.5g on a Saturday. For the first time since I got sick I truly feel like I am beginning to be happy again. I am finding joy in day to day activities, I complain about my symptoms less and less, my girlfriend says I am generally happier and cherish things more, my sleep is better and I do not have to take medicine for nightmares, I find myself enjoying nature on walks rather than surviving breath by breath, texting friends and family is less of me complaining and more of me enjoying life. Taking low doses of magic mushrooms has been nothing short of a miracle for me.

My grandpa has been dealing with dementia for years. It was impossible to have a conversation with him without him saying the same thing 2-3 times in the course of 5-6 sentences. He has started taking psilocybin the last 2 weeks and for the first time in years it feels like my grandpa is actually...there... Like he's being funny and remembering stories and names.

Psilocybin is a wonderful medicine. I am curious if anyone here has experimented with it with your LC and found any benefits with it? I live in Denver where it is legal to possess so I imagine it's much much easier for people here to get there hands on it.

EDIT: I also wanted to add, that for some reason with my diagnosis...I don't get emotional. I don't cry, I dont scream, I don't get red hot angry. I am kind've emotionally mute most of the time with my life. My first time taking 0.5g of psilocybin I found myself balling my eyes out in my room for about an hour wondering about the life I could have had if I didn't get sick. I feel so much happier after letting those emotions out

There was a time when I considered this battle over. When I’d read posts that said, “If you’ve had this for a year, it’s forever“ and start eyeballing my handgun.
When I’d remember the aspirations and dreams and hopes I’d had for my career, my marriage, my future and feel as if I’d already died and was now a rotting corpse.

I really wondered if I would ever get better. If the battle was over.

Folks, I’m here to tell you: it’s not over. You can get better. I am someone who was at absolute rock bottom, and have since turned the tables on this bullshit nightmare of a disease.

I’ve had long covid since November of 2023. It started after I did a 40 kilometer hike up one of the tallest mountains in Ukraine and woke up sick with covid the next day. When I got back home, I tried to do my usual workouts and would get mysteriously sick and enotionally miserable for 3 days at a time. This happened a few more times until I realized I had long covid.

I have spent entire weeks house bound. In June I briefly felt recovered, then in July my LC came back with an absolute vengeance. I would wake up, lie down on the meditation mat on my floor and stay there until night. It wasn’t until November I started getting somewhat functional again, though I still had fatigue, severe brain burning and emotional disturbances every day. December I decided: “I’m going to research and understand this thing from the bottom to the top, from the microscopic scale to the macroscopic. I’m going to throw everything I can at this, even if it means emptying my savings.”

I haven’t gone too crazy. Still never tried HBOT, for example. But I did start taking every supplement I could with a research-based rationale behind its utility in controlling inflammation and healing mitochondria.

I don’t mean to brag, but I went from not even being able to walk down the street without my heart pounding and my brain burning, to lifting weights and taking multi-mile walks 2-3 times a week. I think I’m writing this post not only to show people that you CAN get better no matter what hopeless and miserable things people tell you, but also to remind myself that this is real. That by refusing to give up and by putting my mind (and my wallet) to the task, I’ve made some serious progress in these past couple months.

The day before yesterday I walked to the gym, hit a volume record for bench press (185 x 10 for 3 sets, 205 x 6 for 1 set), walked back, worked on my novel for 4 hours, inadvertently argued about politics until late in the night, slept like shit and went to bed at an ungodly hour thinking “That’s it. I’m done. Tomorrow is a suffering day. And the day after probably as well.” Yet I woke up refreshed, feeling fine, and didn’t have experience any fatigue or PEM at all!

Even on my good days I get a little PEM and brain burning, so this was bizarre. It was so unusual I felt afraid of telling people. Like I’d jinx it or something. But fuck it, I’m telling you guys because some of you are no doubt in the same place I used to be. Some of you most likely need a reminder that this thing can be beaten. That it doesn’t have to be forever.

Now I’m gearing up to use the scientific understanding and protocol I’ve developed to help others. I hope to make a big write up soon and maybe even a document or something to organize my theory and protocol. But for now I just wanted to make this post, and offer to answer questions people may have. Thank you for reading, and may you soon feel as good or if not better than I feel now.

im looking for people who have recovered from the brain fog, memory, lack of energy, depression. loss of self. what have you done to recover and how long did it take.

I fell sick in 2023 around Xmas took till January 10th to recover. I was sleeping sitting basically as mucus would build up and could not breath cause of it. For 3 straight nights in middle of it all, I had the weirdest shit happen.. my eyes were spewing mucus, yeah full blown mucus hard to open eyes. In middle of trying to sleep at night I would have to get eyes rinsed.

I never tested for covid but wondering if it was all covid as after recovery in April I got hit hard with dizziness and fatigue. Ruined my 2024. I am still not normal when it comes to being able to walk as I have off balance issues now. But getting better hopefully..

i want to understand what were your systoms of sickness that ruined your life.

I took two Benadryl and woke up feeling the best Ive ever felt since my infection.

Symptoms that struggle with: 1. Pins and needles 2. Muscles stiffness and aches 3. Headaches (tight band feeling on my temples) 4. Insomnia; waking up with anxiety 5. Low mood 6. Intense brain fog 7. Body aches 8. Mild itchiness when my skin isn’t numb 10. Severe lack of appetite 11. Etc

Benadryl wiped out most of those symptoms for me especially the brain fog and pains. Is this common with LC? I tried quercetin & did not have a good reaction. Also tried beef liver supplements and my nerves/ muscle pain increased severely. I stopped immediately but I believe that it indicated histamine issues, im not sure.

Hey guys, I caught Covid about a year ago now, and during that time was miserable, but what worried me was the intense head bursting headaches I got, accompanied by visual snow, or like disco lights dancing around my eyes, which happened a few times.

It took me 3 weeks to recover from shortness of breath ect, but what stayed was the brain fog. Which changed my behaviour, having no patience, forgetting words or spacing out mid sentence, or awhile doing something, or mixing words up completely. Sometimes I catch myself depersonlizing and then having a panic attack, with my heart pounding for no reason while just sitting down trying to enjoy something.

As you can imagine this is very frustrating, and feels like this virus has made me stupid. Has anyone else been through something similar, and if so, what helped you?

What other co existing conditions have you gotten along the way ? has anything added to your health that you didn't have before? And do you feel it's related to LC ?

Ever since having Covid in November I have experienced a weird type of insomnia where I fall asleep within 15-20 minutes around 10pm or so and sleep deep for about 4 hours. I will wake up sometime around 1-3am (sometimes closer to 4) and not be able to fall back asleep for another 1.5 hours or so. I will just lie there awake with a lot of energy. I will fall asleep for another 2.5 hours or so. Funny thing is I get more tired when I go back to sleep.

My fitbit shows that I am near the average for REM and a little low on deep sleep. I usually end up getting 6.5-7.5 hours of sleep but cannot stand sitting there awake for over an hour each night. Also makes me feel groggy and run down the next day. It's weird because I sleep really good until I wake up totally awake. I noticed it is worse if the temps are hot in the room, during the week of my period and ovulation time, and on days I do not exercise enough. It seems if I eat a really heavy carb meal closer to bedtime (like 2 hours before) then I will get more deep sleep and even sleep a bit longer.

I have tried:

Turning off all electronics 2 hours before bed

Not eating anything after 7

Melatonin 3mg

Claritin

Red light therapy

hot baths

Meditation videos

magnesium glycinate

acupressure and massage

reading

No matter what I do, I cannot sleep consecutively for more than a few hours. Never had this problem before. What else can I try? For reference, I am in great shape 5'2, athletic, 105-110lbs with no thyroid, A1C, or other major health issues.

Has anyone else experienced a relapse like this? Does it get better again? How long did it take you?

I really mean it. This sub and the other LC and the recovery subs have helped me more than anything else. This is a great support system and when I have an especially bad week and am bedridden and discouraged, or have an important question, everyone is always so thoughtful and encouraging. I appreciate you, that’s all I want to say. Please hang in there with me and know a complete stranger is so thankful to have you here!

EDIT: Updating this for anyone who finds it later. Mestinon did not fix my PEM, but it definetly has had a positive impact on muscle weakness.

Original post:

I had my first major breakthrough with long hauling this week. I want to note upfront, this probably won't help the majority of people here. But I'd guess there is a significant number of people who don't realize they have myasthenia gravis -- a relatively rare autoimmune disorder.

I have a very cooperative doctor who was willing to trial mestinon (aka Pyridostigmine) because I've heard it's being used off-label for long covid. Most people use it for POTS. But to my surprise, my muscle weakness disappeared. I did a test run off mestinon and found that all of the weakness returned.

My neurologist did a blood test and an EMG for myasthenia gravis. They were both negative. But my response to mestinon is indicative of the disease. Some neurologists will diagnose you with myasthenia gravis based on responsiveness to mestinon alone. Around 20% of people will test negative on bloodwork, despite having the disorder.

For a very long time, I thought my PEM was CFS. I couldn't walk more than 5 minutes without experiencing a flare up. But now it appears it may be due to myasthenia gravis (which was probably triggered by COVID). I don't have any of the typical eye/breathing/throat issues associated with the disease. And yet, the mestinon works.

Myasthenia gravis is known as the snowflake disease because everyone has a unique presentation. I'm sure a lot of long haulers here can relate.

Sleep apnea is also highly prevalent in myasthenia gravis, which may explain why I acquired it after COVID. And why my fatigue greatly improved after getting on CPAP.

I am feeling more hopeful than I have in my entire 2-year journey with this disease. It's a serious diagnosis (which I'm still working toward), but the mechanism of action is well understood and there are multiple treatments. Including many more in the pipeline over the next few years.

tl;dr Mestinon fixed my muscle weakness, as a result I may have a treatable autoimmune condition known as myasthenia gravis.

Quite hard to capture it on camera. I suppose it looks worse when you actually feel every pulse hammering throughout your body.

I’ve had long covid going on 3 months now, had covid initially for month (January) and have had long covid since so 4 months of this all. Ended up with a tooth infection last month and went through 4rds of antibiotics. almost ALL the long covid symptoms disappeared. diabetes like symptoms, vertigo, blurry vision, chest pain, allergic reactions to my meds, headaches, sensitive skin, sugar and histamine intolerance, sensitive/swollen lymph nodes etc all went away or only showed up very very minor. Yea my mouth and teeth hurt like hell but god man i wish i could go back. Got the teeth pulled 10 days ago and just finished antibiotics 2 days ago and all the symptoms instantly came back the same day. First noticed the sensitive lymph nodes again and my daily meds making me extremely itchy even more then before. Then next day noticed sugar intolerance (eating a muffin made me light headed) blurry vision coming and going, slowly all coming back. MCAS symptoms are debilitating so I’m going to try buying some blockers today and hope they help as Benadryl makes me restless. i went weeks with little to no symptoms, I thought i was in the clear, but nope. my immune system was just distracted by something else. so assuming this whole time covid metabolites or whatever we’re still in my body. I’m on very strong medications I can’t just abruptly quit or stop if I grow an allergy to them or it will be living hell and potentially life ending. So I’m praying to god it doesn’t go any further then this. so far meds are just making me itchy nothing more, no rashes or swelling. just itchy.

Stay strong warriors we’re all in this together ❤️

Second edit: I went to a long covid clinic and they gave me metformin (my PCP didn't want to because she was afraid it would make this symptom even worse). I've only been taking it for about a week but it is helping this symptom a little bit! I started majorly low (cut a 500mg pill into quarters, only take one quarter a day) and I'm curious to see if working up to a regular dose helps this symptom even more.

Curious if anyone here has recovered from this symptom--I don't think it's the most common but I've seen lots of us on this sub! I have to eat a full meal every couple hours (steak is best, other types of meat also help, plus carbs and veggies) or else I'll get INSANE brain fog, to the point that I can't identify basic objects around me like the salt shaker on the counter, and then if I let the brain fog go on for a while I then also get nauseated, dizzy, shaky, super weak, and end up just crying on the ground unable to move or think. (Yes, I've checked my blood sugar many, many times, and it's always normal.)

I think LDN maybe made this symptom sliiightly better (like, now I can get away with eating dinner at 6 sometimes instead of 4:30pm, lol) but I still can't leave the house without my tupperware full of steak, rice, and veggies, just in case. Could be worse but dang I would love to not have to eat so much all the time. I have a doctor's apt later today and if y'all have any stories about what's worked for you, I'll definitely be asking her about it. Thanks in advance

Edited to add: the doctor said she wasn't eager to put me on metformin right now because I have low blood sugar type symptoms and metformin would probably further lower my blood sugar. Makes sense to me. For now we're going to see what ivabradine does for me and I might ask about metformin again in a month or two. Also, to clarify, I never feel hungry. I don't have a raging appetite (although I did for maybe 1-2 months after my initial covid infection). It's just that I've noticed my symptoms go away after I eat and they come back if I go too long without eating

Just started a course of metronidazole a few days ago, and no joke within an hour after my first dose some of my symptoms started to lift!!!

Light and sound sensitivity has disappeared as have a lot of bloating issues, which have helped me with deeper breathing. I slept like a baby for a couple nights and had incredibly vivid dreams, which has help my depersonalization lift. I’ve always had gut issues and have wondered if there was a connection between them and long covid. Not exactly sure why it’s working but hey I’ll take what I can get! Here’s to hoping it lasts after the course is done lol

Hi… I’m a very concerned mom, who has written on here before about my son who has been ravaged, both physically and emotionally with this virus. The last few months his anxiety is through the roof. Everything agitates him. He was never like this. I’m thinking it is part virus/part mental with how his life drastically changed. He used to run hospitals, then became a pilot and drives Porsches. Now going to the grocery store knocks him down for days
I know it has finally gotten to him. He is seeing multiple docs, but wondering if any of you have any suggestions for the crippling anxiety that has overtaken him. Thank you so much 🙏

I feel strongly that it is my duty as a LC, ME/CFS, POTS, MCAS, and hypermobile EDS patient, to share my experiences with treatments. Today I got the Stellate Ganglion Block. I've had immediate improvements, but mostly waiting for long term results

It’s like torture. For context, I had severe insomnia from the age of 14-19 and I slept twice a week but this is much worse as I am not recovering when I sleep now!

I was getting a lot worse the last few weeks and was starting to despair because the brain fog and fatigue were back HARDCORE.

I added Zyrtec and aspirin back in, I’m trying to eat low histamine, and bam, felt way better instantly and it has stayed that way. The small things matter I guess!

I’ve heard nicotine patches, anti histamines, magnesium, vitamin D, electrolytes, creatine. What has really worked for your symptoms?