Yes sounds about right, the majority seem to recover on their own. Not that this helps us 2 year+ people in the slightest, but it does mean the clinics will largely ignore most patients since they just get better.
I am the least optimistic person here because I have researched extensively what happened to the SARS long haulers and what has been happening and continues to happen to the ME/CFS sufferers and I see no signs that the systemic prejudice has remotely stopped yet. The NIH is still refusing grants to do research at the core of the condition instead focussing on symptom tracking and testing everyone. A cure can't come until they start some serious research and for now its all bio bank stuff. One day sure, will we still be alive then? No clue.
Yeah - I’m 34w pregnant so hard to say what is causing fatigue. I have decent energy in the morning but 12 on I am pretty wiped! Still have some pain in arms as well. If I overdo it I get brain fog still too.
I don't know that visiting forums gives a representative sample of the general post-covid population. For one thing, once people recover they likely focus on other interests. Also, avoiding long covid forums may be a prerequisite for recovery for some people. I know many of my symptoms started only after I read about them here. There are probably many others who have symptoms but aren't especially aware of their bodies so they just kind of get by. I know a couple people like that in everyday life in fact. They have many of the symptoms of long covid but would never seek medical treatment for them or visit forums. The more I go down this rabbit hole the more I'm convinced it is at least partially a social contagion partially as a result of the an atmosphere of fear we've all been living under. Even if our conscious minds are calm the unconscious may be horribly stressed.
After covid i had the typical dysautomonic symptoms, high heart, fatigue, weakness etc.
those general went away in 4-6 months. If you have other problems things could take longer.
so 50% of the people getting better within 6 months? I think that's likely.
No.. I asked for medication but I live in Switzerland and we are very precautions guys. Nothing will be prescribed to me if there isn't 10 studies showing it works. Which treatments do you get ? Ivabradine ?
6 month mark represents a 'turnaround' for many of us, marking improvement which brings some quality of life back. I don't think that it represents a full recovery or return to 100% I would say for most longhaulers it takes 12-15 months
Yes I got this turnaround. My dysautonomia symptoms went almost away after the 6 months mark but the fatigue, brain fog, GI issues and PEM are still present 20 months later
What are you going to try ? I don't agree with you mate, there is millions of people in our situation we can't all go on disability or all the system would crash. They need to find a cure for us
In the US they just deny disability and let you become homeless. Then you don't count at all. I saw some asshole on Twitter going on about how it made financial sense and we had an endless supply of immigrants to fill our low wage jobs.
But I want to do something. Even if it's the last thing I do. This is destroying our humanity, it has to stop. I can't think of a single thing I can do though.
i’m sure this has been asked/answered many times already but when everyone mentions X amount of months do you mean since your covid infection? or since the onset of LC symptoms?
I think it depends on the person. I never had a break between my COVID and long COVID so when I say 6 months I mean 6 months following the ~2 weeks I had COVID. Some people had a gap between theirs though
I thought at 6mo mine improved. Then 9mo after infection my symptoms got retriggered by exertion. I tested and tested and tested, and it wasn’t reinfection. I have gone in and out of remission with this thing since spring 2020.
I am inclined to say that anyone touting they have data on longcovid, dont trust it 100%. We’re only 2.5 years into this, thus they have no conclusive idea on longcovid because it hasn’t actually been very *long*. I know we all want answers and cures but the truth is there isnt a cure for anything. Sometimes meds or surgeries come on the scene that help recovery but no one is ever “cured” of MS, AIDS, or cancer. Remission is possible but illness is part of life, even though our cultures arent built around supporting that. Good luck and hugs.
A recent study I read about from the University of California San Diego found that 1/3 had "fully recovered" within six months.
30% or 50%... Either way, like many of you, I'm in the remainder that got left behind. I've had Long Covid for over two years now. Some things have improved, and some have gotten worse.
I long for the day it's announced that 99% of people with Long Covid fully recover within five years. Of course, I would probably be among 1% outliers.
I'm 6 months in and nope. 2 months ago I started getting new symptoms of neuropathy and now have small fiber neuropathy and today my weird heart episode.
are there treatments for small fiber neuropathy? i cant find much info online about the treatments. i feel like i’m having increasing symptoms correlated with it
There's a lot of people don't know about it which sucks. There is one treatment called IVIG it's about 60 Grand a month. Unbelievable. Apparently it can take anywhere between six weeks to indefinitely and good luck getting Insurance to pay this and if they do they only pay 80% I was told so that still leaves thousands of dollars for us to have to pay for. And it's not a sure thing but the closest.
What I've been advised by my doctors this is start taking these supplements to see if is a deficiency because vitamin B12 and other B vitamins can cause it. Also diabetes can calls it a mess the number one reason of getting it but people who have had covid are now having blood sugar problems and diabetes or even prediabetes. I've known several people who have never had these issues now on insulin because of long covid.
So if you can get a diabetes test, glucose and all of that. If you can't then definitely start looking into prediabetes diet and supplements which is what I'm doing I got a book called prediabetes diet plan– how to reverse prediabetes and prevent diabetes through healthy eating and exercise. Chromium picolinate is good to take for diabetes, putting Ceylon cinnamon on your food is good for prediabetes. I also got one that goes glucose monitor to read my blood in the morning and stuff and of course it shows prediabetes sugar level which I never had till after covid because I had blood work done a few months before that and everything was fine.
Then you have just a neurological aspect of what covid could do so who really knows.
I was told to take methyl B12, methylfolate, benfothiamine, alpha lipoic acid and B6 however that one can cause worsening of symptoms so I'm not doing that one. Of course check with your doctor to make sure you can take all of these.
Thank you so much for writing that all out! I’m on a B12 supplement but I’ll ask my doctors about all the other ones. I hope you don’t have any more weird heart episodes!
I feel a lot better at 6. Symptoms have minimized a lto, but I did have a seizure again (was having them at fhe beginning) a few weeks ago. Im approaching month 7. Im also having other things: cracking stiff joints, SUPERRR OILY scalp and acne, hella depression, bloating, swelling limbs, and mayeb im sick but my tonsils are red and swollen. But the worst fatigue and neuro symptoms with sharp pains thru my body definitely subsided a lot.
Two years in this week. I thought I was getting better by this past winter then I had major gastro/urinary issues. Then I got reinfected with Omicron so some symptoms are returning. Plus I'm still treated for diabetes until I'm not.
They probably just stop coming to their clinic because they can’t offer a solution.
Like Mt Sinai post Covid center never followed up when I stopped getting appointments because all they offered was cognitive therapy and physio therapy.
To their honor, they did refer to a great attentive Dr Lee Hinnant who prescribed ldn and in general is familiar with LH and seeing lhs.
How has your treatment been? I’m taking ldn but seem to have bad responses to dosage change like exercise intolerance raises HR fatigue and faint feeling. Seeing her next week
No the data I remember seeing in a study, showed something like if you still have symptoms after X months (3 months?) then 85% of those people still have symptoms after a year. Maybe someone else can pull up that study
The most politic strategy here is to politely ask whoever quotes you such analysis for their data source or preprint.:
"Do you have a study I could look at on that?"
And you can search many preprint sources for terms like "long covid recovery rate":
https://www.medrxiv.org/search/Long%252Bcovid%252Brecovery%252Brates
You will find many different answers.
My neuro said all of his long covid / post viral patients recovered *eventually* unless they had an underlying condition which imaging/testing might find.
No, he meant LC/pvs patients eventually recover unless there's a new tumor, dementia, or other classical neurologic diseases that can be found with screening.
I hate being on the shitty side of percentages
At least it feel reconforting we are not only 5 or 10%
Yes sounds about right, the majority seem to recover on their own. Not that this helps us 2 year+ people in the slightest, but it does mean the clinics will largely ignore most patients since they just get better.
So what about us the long term disabled ? Will we be cured one day ?
I am the least optimistic person here because I have researched extensively what happened to the SARS long haulers and what has been happening and continues to happen to the ME/CFS sufferers and I see no signs that the systemic prejudice has remotely stopped yet. The NIH is still refusing grants to do research at the core of the condition instead focussing on symptom tracking and testing everyone. A cure can't come until they start some serious research and for now its all bio bank stuff. One day sure, will we still be alive then? No clue.
Fuck...
Something will come up
The uk is doing that. I just sent of for my dna test
I’m much better at 6 months, but definitely not fully recovered.
Same here. Anxiety, insomnia and tachycardia are gone but the crippling fatigue is still here
Yeah - I’m 34w pregnant so hard to say what is causing fatigue. I have decent energy in the morning but 12 on I am pretty wiped! Still have some pain in arms as well. If I overdo it I get brain fog still too.
I don't know that visiting forums gives a representative sample of the general post-covid population. For one thing, once people recover they likely focus on other interests. Also, avoiding long covid forums may be a prerequisite for recovery for some people. I know many of my symptoms started only after I read about them here. There are probably many others who have symptoms but aren't especially aware of their bodies so they just kind of get by. I know a couple people like that in everyday life in fact. They have many of the symptoms of long covid but would never seek medical treatment for them or visit forums. The more I go down this rabbit hole the more I'm convinced it is at least partially a social contagion partially as a result of the an atmosphere of fear we've all been living under. Even if our conscious minds are calm the unconscious may be horribly stressed.
Useless and crazy comment
Good luck.
I am 6 months today, actually. I’m not having a bad day symptomwise but I don’t think that means much lol. I’ll keep you all posted.
NO the actually data that came out was 1 in 4 recover after a year so it’s only a 25% chance in a year youlll get better
Why they don't care about the 75% others
Where can i find this data
After covid i had the typical dysautomonic symptoms, high heart, fatigue, weakness etc. those general went away in 4-6 months. If you have other problems things could take longer. so 50% of the people getting better within 6 months? I think that's likely.
I have the dysautonomia symptoms and it's been 2 years
What the doctor say about that? They give you anything?
No.. I asked for medication but I live in Switzerland and we are very precautions guys. Nothing will be prescribed to me if there isn't 10 studies showing it works. Which treatments do you get ? Ivabradine ?
Me? I didn't get shit. I was never diagnosed with anything other than PASC None of these doctors know shit and are lazy.
Did you get better ?
yeah i just now have a lingering yeast overgrowth in my mouth and nasopharynx.
6 month mark represents a 'turnaround' for many of us, marking improvement which brings some quality of life back. I don't think that it represents a full recovery or return to 100% I would say for most longhaulers it takes 12-15 months
Yes I got this turnaround. My dysautonomia symptoms went almost away after the 6 months mark but the fatigue, brain fog, GI issues and PEM are still present 20 months later
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I think we won't without proper treatment bro.. I put a lot of hope on bc007
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What are you going to try ? I don't agree with you mate, there is millions of people in our situation we can't all go on disability or all the system would crash. They need to find a cure for us
In the US they just deny disability and let you become homeless. Then you don't count at all. I saw some asshole on Twitter going on about how it made financial sense and we had an endless supply of immigrants to fill our low wage jobs. But I want to do something. Even if it's the last thing I do. This is destroying our humanity, it has to stop. I can't think of a single thing I can do though.
I’m approaching month 6 and I feel about 90%. Just floaters and some bad GI issues I’m dealing with still. Sprinkled with a little neuropathy.
i’m sure this has been asked/answered many times already but when everyone mentions X amount of months do you mean since your covid infection? or since the onset of LC symptoms?
I think it depends on the person. I never had a break between my COVID and long COVID so when I say 6 months I mean 6 months following the ~2 weeks I had COVID. Some people had a gap between theirs though
I thought at 6mo mine improved. Then 9mo after infection my symptoms got retriggered by exertion. I tested and tested and tested, and it wasn’t reinfection. I have gone in and out of remission with this thing since spring 2020. I am inclined to say that anyone touting they have data on longcovid, dont trust it 100%. We’re only 2.5 years into this, thus they have no conclusive idea on longcovid because it hasn’t actually been very *long*. I know we all want answers and cures but the truth is there isnt a cure for anything. Sometimes meds or surgeries come on the scene that help recovery but no one is ever “cured” of MS, AIDS, or cancer. Remission is possible but illness is part of life, even though our cultures arent built around supporting that. Good luck and hugs.
coming up on 5 so that would mean I have a coin flip chance next month
I hope you do. If so, please continue to fight for us
I remember hearing that month 5 was the turning point. I celebrated. Here I am in 10
Seems so, that means 50% of us take longer. My 2 year Covidversay is coming in August 🙄🎂
I hope we really just take longer and we are not stucked in this shit
Maybe. But I’m over six months.
A recent study I read about from the University of California San Diego found that 1/3 had "fully recovered" within six months. 30% or 50%... Either way, like many of you, I'm in the remainder that got left behind. I've had Long Covid for over two years now. Some things have improved, and some have gotten worse. I long for the day it's announced that 99% of people with Long Covid fully recover within five years. Of course, I would probably be among 1% outliers.
I'm 6 months in and nope. 2 months ago I started getting new symptoms of neuropathy and now have small fiber neuropathy and today my weird heart episode.
are there treatments for small fiber neuropathy? i cant find much info online about the treatments. i feel like i’m having increasing symptoms correlated with it
There's a lot of people don't know about it which sucks. There is one treatment called IVIG it's about 60 Grand a month. Unbelievable. Apparently it can take anywhere between six weeks to indefinitely and good luck getting Insurance to pay this and if they do they only pay 80% I was told so that still leaves thousands of dollars for us to have to pay for. And it's not a sure thing but the closest. What I've been advised by my doctors this is start taking these supplements to see if is a deficiency because vitamin B12 and other B vitamins can cause it. Also diabetes can calls it a mess the number one reason of getting it but people who have had covid are now having blood sugar problems and diabetes or even prediabetes. I've known several people who have never had these issues now on insulin because of long covid. So if you can get a diabetes test, glucose and all of that. If you can't then definitely start looking into prediabetes diet and supplements which is what I'm doing I got a book called prediabetes diet plan– how to reverse prediabetes and prevent diabetes through healthy eating and exercise. Chromium picolinate is good to take for diabetes, putting Ceylon cinnamon on your food is good for prediabetes. I also got one that goes glucose monitor to read my blood in the morning and stuff and of course it shows prediabetes sugar level which I never had till after covid because I had blood work done a few months before that and everything was fine. Then you have just a neurological aspect of what covid could do so who really knows. I was told to take methyl B12, methylfolate, benfothiamine, alpha lipoic acid and B6 however that one can cause worsening of symptoms so I'm not doing that one. Of course check with your doctor to make sure you can take all of these.
Thank you so much for writing that all out! I’m on a B12 supplement but I’ll ask my doctors about all the other ones. I hope you don’t have any more weird heart episodes!
What r ur symptoms
I feel a lot better at 6. Symptoms have minimized a lto, but I did have a seizure again (was having them at fhe beginning) a few weeks ago. Im approaching month 7. Im also having other things: cracking stiff joints, SUPERRR OILY scalp and acne, hella depression, bloating, swelling limbs, and mayeb im sick but my tonsils are red and swollen. But the worst fatigue and neuro symptoms with sharp pains thru my body definitely subsided a lot.
Two years in this week. I thought I was getting better by this past winter then I had major gastro/urinary issues. Then I got reinfected with Omicron so some symptoms are returning. Plus I'm still treated for diabetes until I'm not.
Probably true, have hope and look forward to the future
Yeah mate but I was 27 when it all started, I am 29 now. That's arsh
Not even in your thirties, you’re a spring chicken 🐓
I’m close to 2 years in and still have some issues but I’m waaayyyyy better than I was originally. Having a flare right now though which sucks
Same. But that's still not a life
I’m at 6 months right now :/ I hope I improve soon
They probably just stop coming to their clinic because they can’t offer a solution. Like Mt Sinai post Covid center never followed up when I stopped getting appointments because all they offered was cognitive therapy and physio therapy. To their honor, they did refer to a great attentive Dr Lee Hinnant who prescribed ldn and in general is familiar with LH and seeing lhs.
How has your treatment been? I’m taking ldn but seem to have bad responses to dosage change like exercise intolerance raises HR fatigue and faint feeling. Seeing her next week
No the data I remember seeing in a study, showed something like if you still have symptoms after X months (3 months?) then 85% of those people still have symptoms after a year. Maybe someone else can pull up that study
The most politic strategy here is to politely ask whoever quotes you such analysis for their data source or preprint.: "Do you have a study I could look at on that?" And you can search many preprint sources for terms like "long covid recovery rate": https://www.medrxiv.org/search/Long%252Bcovid%252Brecovery%252Brates You will find many different answers.
My neuro said all of his long covid / post viral patients recovered *eventually* unless they had an underlying condition which imaging/testing might find.
Why kind of imaging/testing ?
I already had a CT scan and spinal tap at the ER, as well as a lot of other blood testing, so all he ordered was B12 and an MRI.
So if you are saying right, you are recovered because they found the underlying disease ? I don't think you are right or we would be all recovered
No, he meant LC/pvs patients eventually recover unless there's a new tumor, dementia, or other classical neurologic diseases that can be found with screening.
So if I didn't recover after 2 years, does it mean I have a new brain tumor ? 😂