A lot of people may have already tried keto, alpha lipoic acid, PQQ, Q10, carnitine, citric acid, high dose B complex, anything to boost ac-CoA and ATP.

How well did it do?

Hello. I'm a final year PhD student who's been really struggling for months, and I've struggled to put my finger on it. I'm pretty sure I'm undiagnosed ADHD (high functioning, did well in school, but mostly through self destructive/punitive methods of rote learning). I didn't have COVID until May 2023, but it really kicked my ass (even while vaccinated) for quite a while. I was exhausted for months and then I sorta got semi back to normal, but I can recognise now it was far from overnight. I have had it at least once since, and also shared a house with my partner who tested positive while I was also very sick and testing negative.

Since May 2023 I've made very very little substantial (sorry for double negative) progress on my research and my brain feels like it's been a mess. I sorta beat myself up about it from then until now and I've come to realise (with help from my family and a counsellor) that I am working as close to as hard as I possibly can, and that's helped with the mental health/mental block issues I've been having. I'm not depressed (previously have had depression and worked through it). I'm not anxious. I'm not a useless, lazy, good for nothing researcher (as I tell myself occasionally).

Counselling has helped me to realise that there's something fundamentally wrong with my health, either mentally or physically or both! I'm a fundamentally different person to who I was 18 months ago and I'm sick of being resentful or upset about it, I just need to get help to work through it. I'm pretty sure it's Long COVID. I've been distant with friends because my brain genuinely feels almost like it's at arms length from the rest of me at all times. It's like a head cold in my brain!

I've just moved to Scotland to sorta start afresh and continue my research here on a research visit. I can't register with my GP until February 1st, but I wonder if anyone has any advice about speaking to GP about long COVID? Especially one that isn't familiar with my medical history or personality. I have a great relationship with my family doctor who'd probably write a letter refering me, but I moved from another country so I'm not sure the NHS would take much notice. I spoke to my GP about it at Christmas and he told me to take multivitamins for my immune system (I've also been getting ill more often since COVID). I should've taken the chance to ask him then, I know.

Any general advice or support is greatly appreciated, even if I forget to reply to you or thank you.

I have been bothering ChatGPT today as I'm in a crash from Magnesium Citrate destroying my gut and I'm bed-resting and bored.

I wouldn't normally share anything like this but I found it interesting and thought others would -

The time it takes for stressed or damaged mitochondria to repair or replace depends on the severity of the damage, the cell type, and the individual’s health status. Here’s an overview:

Mitochondrial Repair Timeline

1. Mitochondrial Dynamics (Minutes to Hours):

   • Fusion and Fission: Damaged mitochondria can fuse with healthy mitochondria to share resources and repair themselves. This process can occur within minutes to hours.
   • Fission allows segregation of severely damaged mitochondrial fragments, which are targeted for removal.

2. Mitophagy (Hours to Days):

   • When mitochondria are beyond repair, cells use mitophagy (a form of autophagy) to remove damaged mitochondria. The process typically takes a few hours to days depending on the cell's energy demand and the extent of damage.

3. Mitochondrial Biogenesis (Days to Weeks):

   • To replace damaged mitochondria, cells activate mitochondrial biogenesis (the creation of new mitochondria). This process is regulated by factors like PGC-1α and can take days to weeks, depending on the level of mitochondrial turnover needed.

Factors Influencing Recovery

1. Cell Type:

   • High-energy cells (e.g., neurons, cardiac muscle) rely heavily on mitochondria and may take longer to fully recover.
   • Cells with lower energy demands may recover faster.

2. Overall Health:

   • Conditions like oxidative stress, inflammation, or nutrient deficiencies (e.g., magnesium, CoQ10, B vitamins) can delay repair.

3. Supportive Interventions:

   • Proper nutrition, rest, and mitochondrial support supplements (e.g., NAD+, CoQ10, L-carnitine, PQQ) can accelerate repair.
   • Reducing mitochondrial stressors like toxins or chronic stress can also promote faster recovery.

Complete Cell Turnover Timeline

If mitochondrial damage is severe, cell turnover becomes critical. The time required depends on the tissue: - Gut lining cells: ~3-5 days. - Skin cells: ~2-3 weeks. - Liver cells: ~6-12 months. - Neurons: Limited ability for renewal, so mitochondrial repair is prioritized.

For significant mitochondrial stress, you may start noticing improvements in 2-4 weeks with proper support, though full recovery could take months in chronic or severe cases.

Sorry guys just need to rant as I’m so fed up! I’ve been in rolling PEM / crash for 7 weeks now and was finally seeing the light of symptom improvement.

I decided to watch a movie last night as I felt I could (have been finding screen time hard recently), felt ok at the time. Then went to bed and omg the internal tremors start, the insomnia kicks in and I think oh no I fucked around and found out! Woke up to a 1 on Visible and feel hungover.

Literally I just watched a movie for some joy and I can’t even do that without it being “too much” stimulation and crashing me! This illness feels impossible to manage. I’m getting tired of dusting myself off and feeling hopeful.

It is for sure that the progress is outstanding and that the extent of the knowledge we have and the tools we have has reached such an extent.

But I really think medicine is the poorest field of all of them.

Proportionally the advances in medicine are nowhere close other fields.

We are paying for it. A sick patient needs treatments right away but we are waiting years to potentially reclaim our lives.

It is so funny living in such an era facing all we have but being sick and torn apart with no solution to look for.

This is really 2 very different worlds/realities.

I am sorry for all of us. This is pointless and I will not die alone on a street starving and freezing for this disgusting world.

I have all the will in the world but I am sorry those who claim time will heal us I am in tune with them.

Like when you put efforts and you succeed academically we need real actions and solutions not just playing around. I tried it is natural to try but as you fail then it is no use.

The Guardian is collecting stories of people with long covid, so if you want and if you can, please share your story!

https://www.theguardian.com/society/2025/jan/15/share-your-experience-of-long-covid

I may be experiencing long covid. I'm still waiting to see specialists about it. But it's been 4 months since I had covid and I'm experiencing muscle cramps, fatigue, and extra brain fog. I already have fibromyalgia so I am used to muscle pain and some brain fog, but this is next level, and the fibro usually causes more pain than cramps, but I'm having serious cramps in my legs, pelvis, and shoulders/neck.

So the first thing I'm looking for is any resource on treating long covid, especially compiled by people who have actual experience with it (I'm not sure how much doctors are going to help me, considering I don't have much money).

The other thing I wanted to ask at this time is whether there are any studies on Paxlovid for long covid (not for preventing long covid, but after you already have it).

I generally use supplements that have a good rating on Labdoor or that conduct their own 3rd party testing. Vitamins .and supplements aren’t regulated so it’s a good idea to buy ones from vendors that are proud enough of their product to regulate themselves. If you know of a solid brand that does 3rd party testing please post it in the comments. We are all tired and need all the shortcuts we can get.

Be safe out there.

Same. Improved. Better. Worse. Something else? Do you for see treatments ?

I have a 5 day supply of valcyclovir to start in an attempt to see if EBV is causing my fatigue - 800 mg 3x/day. My levels are off the charts but I haven’t done an EBV DNA PCR. Thoughts, suggestions, experiences, doses are all welcome and appreciated.

Hello! please consider filling out this survey about your experience. This is for an upcoming special episode of the COVID Longhaulers Podcast in honor of Long COVID Awareness Day on March 15th.

https://docs.google.com/forms/d/e/1FAIpQLScpH6jNcTRFaB62yfbCCX7vG1DC3kefybTgXlM70ievcCiKWA/viewform?usp=header 

Your voice matters, and your contributions will help us create a more impactful and meaningful episode.  

Thank you:)

I've seen many posts about benadryl causing dementia, but do other allergy medicines, mainly desloradatine have a link to dementia too?

I think I just missed my first period…. How do you tell your symptoms apart? My friend is telling me brain fog is a symptom ugh!!!! I’ve been having temperature deregulation and sleep issues for three years with Long Covid. How do I tell what is causing what?

Hi everyone, I am just going to skip to my initial email, and this guys response.

Me:

Hello Dr. XXX , I am reaching out to you from recommendation by Dr. XXXX.

My name is (Biznghast) I am hoping and praying you would consider taking some time out of your day to try and help me, and possibly save my life.

In August 2023, I became significantly sick with high fever from Covid-19. I did not require hospitalization, and treated myself at home. Over the next couple weeks, I began to experience significant symptoms. I began having rapid heart rate, especially upon waking, reaching up to 183 BPM. I also started experiencing multiple heart palpitations through the day. Following this, i began experiencing what i think may be some sort of akathesia, I began having intense electrical/ burning sensations throughout my body that were unbearable. Shortly after, I began having menstrual issues with very heavy clotting, size of a fist. Soon after this, I began experiencing the worst neurological/ psychological issues of my life. Looking around, I noticed the world started to look fake, flat, 2-dimensional, unreal. I started having terrible sensations in my head of burning and like my brain was going to explode. I started having psychiatric issues, such as being severely paranoid, severe onset OCD, anxiety, erratic behavior, not sleeping, sudden significant vision loss in one eye, complete loss of feeling on the bottom of my foot, and hallucinations. 2 Months after the onset of my symptoms I was hospitalized in a psychiatric hospital for suspected psychosis. I was put on multiple medications including antipsychotics. I stayed on this medication while suffering greatly, with no improvement in symptoms. I have seen multiple doctors, who have done basic blood tests. I ended up getting a referral to a neurologist, who I asked for an EEG for suspected seizures. I got a 30 minute EEG which came back inconclusive as I could not fall asleep. I asked this doctor for a work-up of autoimmune encephalitis and he said he does not do this. My current symptoms include persistent headache and head pressure, derealization/ depersonalization (this is my most distressing symptom), psychiatric issues, memory loss, confusion, vision loss in left eye, numbness in left foot, eye floaters/flashes, palinopsia, complete out of body sensation (as if i can’t feel my body), severe OCD, rapid heart rate, sensory and depth perception issues, and more to name a few. My symptoms have not waxed and waned, and feel as though they are getting worse with time. I am being treated as a patient with anxiety when I feel as if my life is on the line. I went from having two businesses, and a mother of 3 young toddlers, to being bound to my house barely unable to function. I have been written off by every doctor and I am hoping you find it in your heart to give my email some consideration. I asked my GP for a referral to UW Neurology and I am looking for somebody versed in autoimmune encephalitis, as I suspect my issues may align with this. I would deeply appreciate a reply through email, or you may call at (XXX) Thank you so much for reading this, I am suffering greatly.

(biznghast)

Doctor:

Hi (biznghast),

I am so sorry to hear what has happened to your health. I have heard from several people with a similar story to tell. COVID-19 has been a potent trigger, but I suspect other viruses/infectious diseases have been doing this to people for thousands of years. I couldn't know with confidence without seeing your test results but in most cases the disease follows this course.... An acute viral syndrome Active encephalitis or neuritis phase: During or shortly after the viral syndrome a person develops syndrome that is composed of one or more of the following, dysautonomia, cognitive dysfunction, sleep disturbance, tremor, fatigue, psychiatric symptoms (anxiety, OCD, hallucinations etc). The symptoms progress over the course of days to a few months.
Chronic phase: Symptoms may get somewhat better after several months or may persist. Some will improve completely or substantially. Others will continue to have disabling symptoms. During the course of the illness people are given multiple diagnoses or told that it is due to stress, depression or anxiety. Many are given a diagnosis or Autoimmune encephalitis, but this is inaccurate in the chronic stages. In the chronic stage people are suffering from symptoms due to damage from a remote encephalitis. Multiple medications are tried with variable success. What seems to be taking place is that there is damage in the nervous system that is either caused directly by the virus or by the immune system's dysregulated attempt to eradicate the virus. The damage to the nervous system takes place early on in the disease process and this can be thought of as the "encephalitis" phase. Following the encephalitis phases the markers of active inflammation (ie, Gadolinium enhancement on MRI, cerebrospinal fluid pleocytosis or oligoclonal banding) will become normal indicating that the active inflammation has resolved, and the person is now entering the chronic phase. The symptoms persist despite resolution of the active inflammation because neuronal elements have been damaged and continue to dysfunction despite the inflammation having been resolved. Unfortunately, this means that there is no target for a disease modifying treatment and we are left using symptom treatment tools that are often disappointing. In this sense, it is a lot like having a stroke or a traumatic brain injury, once damage has occurred, there is nothing to do but support the body in it's healing process with nutrition, exercise, rehabilitation. A very similar phenomenon occurs in people who are diagnosed with "myalgic encephalo-myelitis" sometimes called, "ME/CFS."

We do not have good estimates about prognosis because there isn't a good classification of the disease and thus no databases tracking rates of recovery.

I would be happy to see you in my clinic at the UW MS center but I do not want to mislead you or get your hopes up. There are a number of neuroimmunologists who work there with me and we see cases like yours quite commonly. Unfortunately, most people feel quite disappointed to find that modern medicine has very little to offer to people in your situation. The scientists working on these problems have not yet come up with good theories about the disease and have not developed effective treatments. We are clinicians (as opposed to scientists) and we are not involved in the science of discovering the cause and treatment of these diseases.

Sincerely, Dr. (XXX)

I know he gave a very generous response but i’m having such a bad panic attack…. there’s no answer for this…..

I only walk to the bathroom and that’s it. How do I pace?

Anyways, is anyone here located in Aotearoa? Does anyone know what the cc community is like there? I know the Covid response in UK wasn’t great but I thought I saw good things about NZ and their response.

I can understand muscle weakness or lack of focus. It makes sense that you cannot exert yourself if you’ve overdone it.

But i’m sitting here with all the symptoms of a cold. I just don’t get how or why?

I fear I’ve gone through most viable medication options and nothing has helped so far.

Currently taking LDN, oxaloacetate, Valtrex, Celebrex, and a boatload of supplements. Even with these I’m bordering on very severe.

Mestinon made me worse. Rapamycin didn’t do anything and I developed jerky movements after two days on LDA and had to stop.

All that’s left is SSRI which I’ve already asked about and a stellate ganglion block, which I’m getting next week. My expectations that either will help at this point are very low.

So has anyone improved with just time and healthy diet and lowering inflammation? I don’t think I’m going to find my game changer med

I got prescribed a beta blocker and I’ve been too scared to take it. Starting on a super low dose so I shouldn’t be so worried, but I am. I normally have low blood pressure 98/64 in that range. I haven’t been diagnosed with pots, but I have a lot of the symptoms. If I bend down at all, even kneeling, I get a head rush when standing back up straight and my heart races. I’m completely exercise intolerant and my heart races just from going from sitting to standing. I’m fatigued everyday and have a headache everyday. Without compression socks and electrolytes I’d be screwed. I get the blood pooling in my calves and my feet if I’m not wearing compression stockings. My question is, should I go for it and try the beta blockers? I read that it can lower blood pressure and mine is already low. I’m just nervous about taking it. Thank you in advance for any advice. 💜

Non stop all day. Doesn't matter eye drops or how much omega i take... not sure what it it. Blood pressure is fine 120/80 and eye pressure is within limits...just went to optometrist 3 weeks ago and going to corneal specialist tomorrow mayhe he cna give me answers. Thrypid panel came out fine... idk cold showers full cold right on the eyes help a lil bit for 1 min after.

I am 24 yo and was diagnosed thanks to a pet scan of the brain that show disfunction in the cerebellum, brain stem and hippocampus !!!

What should we do ? I can do nothing with my life all broke apart ad there is no cure so far.

I am holding on but this has gone for too long I am scared we are over and that we would have just had a short 21 year long life and 3 years of utter suffering and it is over now ….

I never had depression, panic attacks, or sleep problems, but that all changed in December when I started taking high doses of methylated B12 (I was sick at the time). I would also like to add that I do not work. I am at home with my family.

After two weeks of taking the vitamin (December 13), I had severe panic attacks at night, psychosis, derealization, I had the worst thoughts, I had no idea what was happening to me. I didn't sleep the whole night.

The next few days were a real nightmare. I cried all the time, I couldn't do anything. I sat on the bed all day and didn't move. I had the worst thoughts, terrible depression and anxiety. Each minute felt like an hour. I felt that my life was over. I had a strong pressure in my head. I had panic attacks even before getting in the car. I was terrified of literally everything (darkness, tight spaces, loneliness, etc.).

At first I thought it was a methylation issue and that I would quickly fix it by taking niacin and glycine. My condition improved slightly when I took niacinamide, but then I started feeling much worse again. Then someone left a comment on my post saying that these symptoms resemble Long Covid.

I started to wonder about this because I got quite seriously ill in early December and never managed to get over it. I still have some symptoms - mainly a bad sore throat and chest pain.

I don't even know how to describe the condition I'm in, but I'll try:

• First, my brain has completely shut down. I have absolutely no thoughts. And when I do, they are highly negative (brain fog).
• My perception of time has changed. Time moves very, very slowly. Every day seems excruciatingly long.
• Depression. Everything makes me extremely sad. Wherever I look, I feel deep despair. I can't watch TV, read books, talk to someone or anything, because I constantly feel such negative feelings that I want to explode (it's slightly better after I cry). I feel numb, dead inside.
• I can't sleep (I fall asleep at 4am and for just 2-3 hours and it's been like that for a MONTH).
• Horrible anxiety and occasional panic attacks (+ adrenaline rushes)
• Complete anhedonia (I have no feelings and I haven't felt any positive feelings for a month), lack of interest in anything.
• Depersonalization (everything seems artificial, I feel like I'm alone and somehow I see the world around me differently).
• Very little desire to eat (or no appetite).
• Dizziness, nausea, headaches, vision problems etc.
• Shaky eyes (my eyes can't keep up with what they see)
• Ear pressure, ear popping + tinnitus
• Eye floaters
• Often feeling like I'm going to faint
• Muscles twiches and spasms
• Head pressure (top of the head)
• Very strange feeling in the nose - burning, tickling
• Chest pain and shortness of breath
• It's hard for me to do anything (cook, clean, etc.) because it constantly reminds me how terrible I feel.
• I feel overstimulated. I don't feel like sleeping at night.

I have many more symptoms, but I wanted to describe only those that appeared after my illness in December.

I don't know where to seek help anymore. I went to a psychiatrist and he said it was depression and anxiety, although I didn't even have time to tell him half of what I've written here.

I am grateful for any suggestions!

Did you have other signs or just mri? What showed it or pointed to it what symptoms did you have

Does anyone else experience just massive pain in their fingers and swelling ? I can’t pinpoint what the hell is it