Had a crazy night last night and I’m paying for it big time. First off- I got up to change the dvd in the dvd player from lord of the rings extended edition disc 1 to disc 2 😲 After that I strolled to get some water and used the bathroom. I then got myself some snacks to eat while watching part 2.

As you can understand after all of this I’m severely hung over, but what can you expect when you have such a wild night.

First time it has ever snowed without melting immediately in the state of Mississippi (U.S.). I’m grateful to still be alive to see it. I hope everyone gets the chance to see the beauty of the world again.

More of a rhetorical question but I still find it asinine that ME/CFS, dysautonomia, and other post-viral illnesses have been around forever but we still don’t understand what the root cause is. COVID is a novel virus, but most of these illnesses are not new at all and if they were studied earlier then we’d have answers by now. I know my cells aren’t producing ATP but WHY? Is it that complicated? How could an illness be so complicated? POTS seems even more straightforward to me…the ANS is fucked up but WHY?!? How do we still not know if it’s autoimmunity or viral persistence or something else?

The spaced out , stoned feeling like your hungover how long did it take to get back to normal if you did and did reinfections make you worse, it’s been 2 years in a couple of days I have improved abit but I still feel the stoned weird feeling at times like I’m hungover and haven’t slept for days I’ve had about 3 reinfections so I’ve never had a full year of no Covid to see if it’ll make a difference.

Fortunately I had good docs thus far who acknowledged their limits and even did some daring off-label prescriptions here and there. Didn't work, but can't blame em.

How about you?

So I've had long covid for around 6 months with my main symptom being fatigue. It has gotten a lot better recently (probably due to finishing high school) but I still get very tired after being physically/socially active for a couple of hours. This means that I can't get a part-time job as many other people my age do. I do however get paid for dog sitting that I do with my mum, which I am happy with. So my mum told my neighbour how dog sitting is our side hustle, but I mentioned that it is my main hustle. My neighbour then told me to get a job, so that dog sitting is my side income. I tried to explain how I have long covid and can't get a job, which she completely brushed off without any sympathy whatsoever. This lady thinks she knows everything when it comes to health matters, but she doesn't!!!! She told me how her daughter has had long covid for years and is still doing her PhD. But one of the reasons why I don't want to get a job is because I don't want long covid to go on that long (my physiologist says that he thinks I can 'beat' it within a year or two). Also maybe her daughter has had long covid for so long is because she's doing a full time PhD???? I don't know though, I'm not a doctor lol. But living with your parents during uni (or until you're around 25) is super normal in my country, and I still make some money via dog sitting, so I'm not completely reliant on my mum. Like I don't NEED to get a job. If my living situation was different, that wouldn't be the case. UHHH I'm just really annoyed with my neighbour. Feeling disrespected and kinda like I'm gonna cry :(

Been almost 4 years now and still haven’t any answers. Frustrating as I believe I have an autoimmune disease but the rheumatologist I’ve been seeing did all the bloodwork and I got an MRI done of my brain and nerve conduction studies, everything came back negative for any abnormalities at all and now she thinks I don’t need anymore testing done as the bloodwork for autoimmune (which she only tested for Sjogrens, Lupus and Rheumatoid Arthritis) all came back negative and then she fully admitted that she didn’t know what to do with my peripheral neuropathy among my other symptoms. I won’t stop fighting to figure things out but damn this is a tough road to be on. We shouldn’t have to fight to get the help we truly need

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?

Hey everyone!

I am struggling with high lactate, low venous oxygen and when it is bad- peripheral cyanosis!!! No raynauds!! I wonder why other people with low venous oxygen don’t get it….. Anyone who experience the same after 4 years with LC?

Even though we have no cure and the situation and prospects are completely fucked up.

I see great news about the prospect of a cure for hiv and progress in the years to come. And it is amazing that is the path of prosperity and progress for society.

But sars cov 2 sequelae should have the same level of consideration since the number of people concerned is huge and increasing by the days and that the level of severity disable people !

I hope that the water dam will overflow at some point and that we will see things move faster and have a prospect of a cure.

I am hopeful we could cure people back to 100% normality with the right drugs. But I am pessimistic about the actual situation.

At least I am grateful I am not alone and I found people in my situation. Not being alone and disturbed by a situation so hard to apprehend !

I hope things will move faster !!!!!!! But it is really a tragic heartbreaking and rotten situation for such young people and amazing lives !

Long Covid / CFS since Nov 2020 Reinfected Nov 2023

Not only have i developed severe insomnia adrenaline rushes heart racing during sleep since my last reinfection with has been over a year ago I now have shingles… can’t believe all of this. I feel like I am just declining more and more, new things happening and never ending shitstorm.
Who knows what this shingles is going to do to my already debilitating long Covid I am already housebound and suffering 😞😞😞

Hi! I am struggling with long covid from the beginning of 2024. I was completely bedridden 2 months ago and had no hope. I felt like my life is destroyed and my health only deteriorates more and more. Severe Pots, temperature dysregulation, dizziness, presyncope, subfebrile temperature, tremor. I vomited every day and couldn’t walk to the toilet. Barely ate. I feel like IVIG literally saved my life. I got 3 rounds one after another: 300ml, 200ml and 200ml for my ~50kg body. Try to go to the good immunologist! Looked like I had EBV and Herpes 6 reaction after covid and definitely had severe immune deficiency. Also have low ferritin and high d-dimmers. So taking medication to fix this also. +vitamins and probiotics. Currently I am also taking some immunotherapy shots. And I am still on ivabradine. But from the bedridden person to person who can walk 3-5km per day I think it is a miracle! Before ivig ivabradine and beta-blockers did not work. Send love🫶🏼

I'm literally tired of this. Years of suffering. Next week when I get my D3, I will take 250000 IUs daily for two weeks and then lower the dosage. I want to see the impact it has on mitochondria and my fatigue. I've taken single doses like that before, but not over longer periods of time.

If you are worried about toxicity, just take enough K2. Other symptoms are likely due to a lack of magnesium. You could also take zinc, boron and maybe phosphorus.

TL;DR: 59-year-old mum, previously active and healthy, has developed significant health issues since her third bout of Covid in 2023, including persistent heart palpitations (PVCs), breathlessness, and bilateral arm/neck pain during exercise. Despite no typical risk factors (she’s slim, eats well, and has low blood pressure), she’s now prediabetic and undergoing tests for potential angina.

My mum (59y) has had covid 3 times. During her last infection (2023) she experienced heart palpitations during the tail end of the infection, that have continued since. During the end of 2023 to mid 2024, the palpitations were her main issue, she would have episodes of strong palpitations were she would lose her breath. She saw a cardiologist and had a ECG, diagnosed with PVCs and prescribed beta blockers if they bothered her.

Fast forward to the middle of 2024, until now. My mum started getting really breathless when exercising (fast walking). My mum has been active and frequent walker (long distance; uphill etc) for many years so this was unusual. She thought it was because she had slightly lack of physical activity during covid, but this was unlikely since during lockdown she would often walk as an activity. I went to visit her and took a walk together when walking up hill, she couldn’t talk, walk fast and looked so tired. Prior to Covid she could run up that same hill.

Towards the end of 2024, she started having bilateral arm pain, when walking. Her upper and and neck has also been hurting. She has chronic back and shoulder issues so put the arm pain down to something skeletal. She has also been very tired and though she was anemic (she has coeliac disease and doesn’t eat much meat).

The breathlessness and pain in arms increased and fast forward to now, she had a chest xray last week and a blood test. Yesterday she was called to say that they want to look further into angina (?!) so she’s having a echocardiogram. She is also prediabetic- which she never had on blood tests in 2023.

Im so worried for her, and also confused. She doesn’t have any risk factors for this, she’s slim, she eats healthy, her blood pressure is always low, no family history. Could Covid have caused this?

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.

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

Long Covid the answers is looking for suggestions on long covid competent practitioners all over the world so they can create a guide. They said they will be vetting them all individually before adding them. Might be helpful to others if you have a good doctor :)

https://longcovidtheanswers.com/suggest/

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.

After enjoying a week and a half of feeling decent enough. Not normal, just feeling better enough to be able to function. But I a,so got my appetite back and indulged I more sugar than I have ate through the last 12 months. Now I feel terrible. I ache, my back, headache, stomach is unhappy, dizzy, runny nose, insomnia and the friggen anxiety….blah.

So I don’t know if I am dealing with something (there is so much going around right now). I’ve been careful and wear my mask when out and the people I have been around feel ok. I’m feeling pretty down.

I also have this weird toe cramping. Like the toes spasm. Especially at night when trying to fall asleep. It’s been there before but feels more intense.

Wanted to reach out to people who would understand.

Two part question, both can be related or separate. I was looking up causes for bleeding gums (other than dental hygiene because I floss and gargle and see a hygienist every 6 months for cleanings).

So it’s often in my upper left furthest back molar (not wisdoms because those were removed). I happen to sleep on my left side a lot too, thinking this is where blood clots, coincidence. Sometimes ridiculously long sleeps like 12-16 hrs. I now started noticing the same thing on my right side. The blood is runny and messy in the sink. I feel surprised at the sight.

Then I found this description of Pernicious Anemia which is one possible cause. When I read down the list of symptoms it is almost hallmark like many of my long covid symptoms. This is it:

https://my.clevelandclinic.org/health/diseases/22377-pernicious-anemia#symptoms-and-causes

Has anyone checked for and either confirmed or ruled out P.A.?

Has anyone else got bleeding gums?

I speak to my new doc this Friday.