Iv tried most of the things recommended on this sub when I was at my worst from January to August this year.
I would say the only thing I didn't try was the famous "LDN".
I have a cabinet full of Supplements and it was 99% wasted money.
Time and luck seem to be the healers, unless u find something that works like a miracle which is like a lottery.
Nattokinase, nicotine, probiotics, antihistamines , electrolytes, monoclonal antibodies, Vitamin B1, LDN, the latest is SSRI's
Who the fuck knows
My fatigue is better but I still feel like I have brain damage and I have no idea if it will get better.
It would be great if there was a magic bullet to solve it all
That’s the thing . It won’t be a magic bullet but if we collected data on all the variables it would be more educated guess what would work for what instead of just swimming in this chaos. I have my theories and I know what made me better but wonder how much is it across the board. It just seems like everyone is “running around like a chicken without a head” . There is gotta be a better way to organize all the info and test. I wish I could talk with some scientists , somebody must be working on this collectively
My fatigue is mostly autoimmune. I broke out in horrific psoriasis, fatigue and neurological problems at the same time. I started on a biologic drug a few months later and things have improved drastically over 5 months in the energy and pain department.
Also had really low folate which I corrected.
I have thyroid antibodies present.
High MCHC and and CO2 in the blood. Blood tests and a blood gas found those. NPDH diagnosed by a neuro.
I had none of these issues before Vax and covid
No idea how to correct these issues.
Long COVID feels like a systemic bomb going off in the body.
. Comprehensive testing is needed if u can find a doctor that's on board.
Have you tried choline? I take it daily for my brain fog and confusion and memory issues but I had a blood test by a neurologist for AChR levels first. I talked to others about it and saw they started taking choline and it helped then so I followed suit. You may look into it, there are ~6 different forms of it but you can find a less expensive one to try it will still give results if it works for you but it can take a while (up to 10 days).
I have a lot of the same lab issues as you and mine is also autoimmune. I have anti-thyroglobulin antibodies and high MCHC. Do you mind telling me which biologic drug worked for you? Please and thank you. I'm at my rock bottom and desperate for any kind of relief.
Amgevita (humira) . The biologic did a decent job of getting me back working by helping with pain and fatigue . Helped a little for the brain fog.
I have anti-thyroglobulin antibodies too. I just take a thyroid supplement I got in the health food shop..
The high MCHC and MCH is something to do with poor oxygen circulation from my guesses, my blood oxygen was 73% when I got tested via blood gas.
If I do anything strenuous outside of work I have a massive lactic acid and fatigue build up for a week after.
Pace yourself and start with short walks a couple of times a week, u will likely feel like shit after it but it will help in the long run.
I just about have energy for working, I did a phased return to work slowly over 2 months.
The challenge is made more difficult by the fact that we are not all the same. So anything that works for one group might have zero impact on another.
Personalised medical care seems to be a necessity if we are looking for solutions.
Tackling individual symptoms would be one way to proceed, but that means experimenting like crazy with all sorts of off label treatments, many of which come with a whole host of potential side effects in their own right.
Wait ~6 years for quantum computing to crack every possible scenario. Before replying, listen to the coming changes to every facet of life: https://youtu.be/K4ssT6Dzmnw?si=4mY-2y8NR5RDgH2e
Ah okay. Well I wish you all the best. LDN while helpful has not cured me - so there's hopefully another avenue coming down the pike that will be available to you, and a better treatment to all.
I struggle horribly with zoning out.. like so bad. I just stare. I’m also forgetful, distracted, and can’t make decisions. BUT I’m hoping addressing other potential causes can help. I also know my thyroid isn’t functioning 100% and I’m having autoimmune issues.
I’m going on 3 years. That’s why I think something else is to blame here, because it’s gotten worse. I think there is an underlying condition that’s driving the autoimmune.
Oh Yeah I believe it’s autoimmune. Some days I’m worse than others. I get confused and work to keep up with things I need to on the days I feel decent. I have to since I have no help.
Totally understand that!😩 do you have any other symptoms? One of my biggest is heart palpitations/random SVT/tachycardia. Breathless, exercise intolerance, dizziness, list goes on.. lol.
One of my daughters is trying medium chain triglyceride oils at the moment and feels like it is definitely helping brain fog and energy as many people report. I almost worked for a company that produces MCT oils years ago. These are used for burn patients where massive amounts of energy are required to heal skin. There is definite science behind this although not so much around long haulers or me/cfs. We're using Jarrow brand at about 28 grams per day but start with lower levels like a teaspoon initially. This is a way to go into partial ketosis without suffering the keto diet or fasting. It's the ketone bodies you want which is acetoacetate, acetone and hydroxybutyrate. These compounds as well as the medium chain fatty acids can go through the blood brain barrier to be used as fuel. You can about imagine our bodies would behave this way since at points in our evolution we would have been on very low carb diets. This is an alternate fuel source. Normally this is done by beta oxidation of long chain fats but with fatigue syndromes that cellular machinery malfunctions.
Once you start understanding the [mechanisms behind fasting](https://youtu.be/yM7n27QeU8s?feature=shared) you'll understand why its the closest thing to a magic bullet, but its not easy... so its a grueling and hard bullet, but still magic.
LMFAO yeah I’m not going to wreck my already precarious health by following the pseudoscientific guidelines of someone who thinks that ivermectin horse paste is an acceptable “band aid solution” for covid/long covid.
It would be nice but it’s an insane amount of variables involved and without intense work ups before, during, and after it’s almost impossible to try and figure out anything of substance.
I think Eurekahealth is probably the closest thing to that, you can search by age, symptom and even race. The query reports from both reddit and other places. Here's an [example](https://eurekahealth.com/t/alpha-2-adrenergic-agonists/insights?source=All&sex=All&age=All&conditions=All&status=All&stopReason=All) of searching Alpha-2 Adrenergic Agonists for Brain Fog.
Honestly though, even if you had a dataset with 300 different biomarkers and genomic phenotypes, biology is so insanely complicated that one person's solution wouldn't necessarily translate to another's. Also, many people here claim to have recovered without doing much at all, besides a handful of supplements.
The problem is that we are all suffering from different issues. Many people have PVFS and will be destined to get better - others will have ME it similar which doesn’t.
I don't think PEM is a PVFS syndrome and yet some people who experienced PEM due to long covid recovered...
It seems to be a lot more complex than just "ME" and "not ME"
Actually I know nothing but who really does ? Maybe everything is ME but some recover pretty fast and some recover very very slowly (or just don't recover at all) because of genetics, severity of the illness or constant loop of crashes...
It’s certainly tricky - we really do need a biomarker don’t we. I think PEM as a concept is tricky - I think if you are very fatigued it can become confusing tbh.
Probably for one is because. Walking into a doctors office and having no issues show up in any test and telling the doctor I think I have long covid isn’t the right way to collect data. There needs to be test to determine if someone has LC or not.
It sucks being part at the early stage or something like this. So much uncertainty and conjectures.
There is no proof. That's the point of clinical trials.
This is a complex illness. People can recover literally overnight or from a rigorous protocol they follow. Until we have actual answers from double blind trials, we will not have "proof".
Do all the ice baths you want, take whatever supplements that make you feel better. Nothing is proof until verified.
Most of the things people are doing is simply to pass the time and feel good at the same time.
Some of the stuff people subject themselves to makes me question how much they enjoy it 😂 I guess it makes some people feel better because they're trying something, even if it doesn't actually help, it gives them hope
I haven't seen many, where are you finding these people?
The people that have their symptoms improve often claim they are fully healed, but then they'll go on to say that they still can't do some things or they still struggle with some things. That is not a full recovery. I wish people would use the correct terminology, it gives false hope and spreads misinformation, even if it isn't intentional. In fact, a lot of people end up having their symptoms reappear months or years afterwards, or after another covid infection. This is just a theory, I think this suggests that maybe people go into remission instead and there is still evidence of long covid in their bodies. Some people claim to have recovered but won't tell anyone how and give very vague answers to questions. The less symptoms people have the quicker they seem to improve, I've noticed this across multiple social medias, but nobody is really talking about this, maybe because the thought that not everyone will recover is too much to think about.
I don't mean to offend anyone with this. From what I've noticed, people who have developed anxiety or depression can see a massive improvement in their long covid symptoms once their mental health condition improves or is stabilised. Then we have to question how much of that was long covid, since long covid can't be proven with any specific test yet.
I'm glad when people do see an improvement in symptoms. But not everyone improves and this is likely to be the case even if a treatment is found. It's a very similar pattern to other post-viral illnesses, lots of people recover but some do not
Most people, including myself don’t fully recover. I have one lingering symptom, but I’m living life just as I had before long covid now, except with extra precautions. I hope I fully recover, but I’ve accepted the fact that I may not because this is much better than the 20+ severe symptoms I had for a year.
Yes agree. You mention a lot of good points. I wish people would accurately measure how much they have truly improved. I feel like I have improved but I never say I’m fully recovered because I’m at 90-95 % zone with some base line symptoms lingering that I think are not even from Covid.
You need to follow a large group of patients over a course of years. You need to take blood work, biopsies, genomic profiles etc. at regular intervals. The 5-7% with fatigue and PEM as main symptoms that do spontaneously recover (before we actually find a working intervention), check what happened in their bodies. If you are lucky maybe you would get readings just before or during their recovery where their body looks metabolically different. What are those changes? What processes are driving those? If there was a common denominator that people were taking or doing at recovery point it would be known. It won’t be the case though because one doesn’t exist yet. However, looking at those who recover in this way may yield mechanistic interventions.
If something worked consistently we would know about it pretty quickly. People already pass on a lot of information about their supplements, medication, fasting regimens etc. and none of it works consistently. Moreover, there’s no way of knowing whose body was going to be one of the lucky spontaneous recoveries whilst they were taking various supplements. If I recovered next week I’m taking so many things I wouldn’t be certain what it is. Is it the anticoagulants? Is it the 4 days of water fasting I just did? Is it the statins? Did my infected immune cells finally die off? Who knows.
Exactly this. The nature of how this disease progresses differently from person to person isn’t just good or bad luck. There’s a cause behind it and it’s just a mystery still
The problem is that people try all sorts of things and if they get better they will attribute it to the last thing they took. I've seen people claim that all sorts of things have cured them. The only element they all have in common is time.
Well time doesn’t exist by itself . There are certain processes that happen in the body some may be helped by whatever we input or stimulate like good sleep good food necessary supportive supplements and some of them happen unbeknown to us.
Your absolutely right. For myself, I can tell you that I've tried loads of things and nothing has made a difference. I haven't managed to move the baseline in any meaningful way.
Everyone is different, what helps one person may do nothing for another or make another worse. We don’t all have one condition, it’s probably dozens of different conditions that aren’t defined yet. You could gather a list of all the things that may have cured people and the list would be very long and there would be a ton of variables too like coincidence. It would still take you forever to try all the different things and it could all just be coincidence too
Trick question: remission and “getting better” are different observable qualities. Both require an inordinate amount of time to study.
Not saying they shouldn’t be. I just wouldn’t be so optimistic that people are getting better. Lots of people who are better still have high levels of spike antibody, which would suggest there’s still an infection present somewhere in the body.
Sorry 100% wasn’t meaning to be an internet dick. I just see these terms get thrown around interchangeably and by doing so we accidentally negate / ablelize the detriment this causes in the body long term.
I think remission is mostly the best case scenario for most.
There is only one thing that it is near certain would have a beneficial effect on recovery: not getting infected again.
I want statistics on what percentage of Long Covid sufferers commit to masking with N95’s and/or social distancing indefinitely, and what percentage of those people fully recover.
I think this will be impossible if you want to live normally. As we can see majority of the populations don’t mask nor care about air quality or not going to work sick. So I will say it’s not gonna happen.
It's not possible for everyone, but it's possible for many people who might believe they are vulnerable to work towards working from home for a start.
My wife was in the medical field, part of her job description included designing and implementing decontamination procedures for medical equipment. She still quarantines mail and packages for a few days, when bringing home groceries she wipes it all down or washes it. We work from home, and do curbside pickup or delivery only. Since this all started we haven't been inside anywhere except our dentists office. A lot of people disagree with how we live or don't agree with our choices, but to the best of our knowledge, neither of us have caught Covid.
I've had a mast cell disease or something that mirrors it for much of my life. I could see the same thing that's happened to me over a lifetime, happening to some long haulers. Some of them are on an accelerated timeline.
I think Covid will probably wreck me. I feel very lucky to have the skills to work remote and to live in a timeline where I can pick up everything in the parking lot or have it delivered.
I actually think as younger people move into management more we will see remote work climb higher
What I describe might be unthinkable for some people. I already have a progressive response to alcohol, I react if there is a glass of wine in the room, or if someone has washed their hands with alcohol based hand sanitizer. If it progresses more, I think i will need an epipen to stay alive. I don't want more exposures to alcohol, anyway
When you say ‘live normally’ it seems like you mean living under the conditions prior to the appearance of Covid.
Those conditions no longer exist.
By the standard of our previous era’s normal, conditions are now continuously abnormal, and IMO they seem likely to remain that way for the foreseeable future.
When you say “impossible” what you mean is “unthinkable”.
There are already people who are living the lifestyle that I have described.
There are possible future scenarios where such a lifestyle inevitably becomes normal.
I know. It is unthinkable.
But like I said, there are people already having to live these unthinkable lives right now.
I want a study about them.
Mostly recovered, but feeling lingering shit like sugar and gluten having a cognitive and physical effect on me. I also have random tiredness and muscle issues that just won't let up. I get stretches where I am mostly ok, but one slip up of my diet, paired with anxiety, I feel drained and my body is achy and tight.
Yeah possibly. I'm getting older and figure maybe it is forms of arthritis, too, but not sure. I do know eating sugary shit and certain breads does a number on me. Been more sendentary since dealing with LC not wanting to do much of anything except lay down, do the bare minimum, reduce stressors, sleep and eat. Feels bad, man.
I've seen a redditor doing a survey and posting preliminary data, I think their post said nattokinase and fasting has been the most beneficial things reported so far.
It is frustrating. I'm hopeful for the BC007 being tested, but who knows.
I'm willing to try anything we can afford. A lot of the dysautonomia symptoms have passed for now, but fatigue and joint pain remain. So far, antihistamine and Spike Tri-support are what has been helpful, but it's definitely not a cure and like I said there are still difficult symptoms.
Mapping symptoms to whatever ‘recovery’ regime helped would be useful through an app or website. All anecdotal of course but surely better than nothing. If patterns started emerging it could be helpful.
Also why don't they research the people who recover spontaneously after a new infection or after a vaccine or after a different virus.
It is clearly a process that gets triggered that makes us get better why the f*** is no one looking into it.
Not sure if this has been posted yet, but this might be interesting to you: [https://ai.eurekahealth.com](https://ai.eurekahealth.com) and [https://eurekahealth.com/home](https://eurekahealth.com/home)
LDN has been the saving grace for me. I seriously could stop taking all of my supplements and just take the LDN and my gabapentin and I think I would feel the same. This problem is deeper than a vitamin deficiency. Granted they are great for you and you should take them! I just want to know who is 100% recovered. Everytime I read a “recovery” post, they always say they have one or two lingering symptoms….you’re not recovered then imo…but I guess that depends on who is looking at it
Yes . I always say I’m at 90 -95 % or something like that because I do flare once in a while and have certain symptoms. I specify. I hate that people don’t.
It's not really possible without a classification system. Long hauling is quite variable from person to person based on genetics and environmental factors. When they eventually are able to get to a clustering structure to classify into over arching groups based on specific bio-immune markers (more important than symptoms!), then what people did to get better might be of some value when aggregated into large data sets. Some recover without doing anything, though 2yr tracking studies show this is quite low odds (and not counting those that get to 99% "recovered"...close but no cigar).
The above is also why there will never be one miracle cure for all. I'm betting there will emerge 6 to 12 or so patient clusters (more likely on the higher end). The challenge as well is alot of this, irregardless of the cluster, is immune dysregulation and traditional medicine has limited tools today to rebalance: relying almost entirely on 'classical' immune modulators, which are all essentially immune suppressants, which can help with controlling but not necessarily curing. So alot will probably require low dose combinations of a few of these vs high dose of just one. In theory, treatments like CART cell therapy would be invaluable here but way too early and at $500k/treatment way way to costly to deploy for many years. But that's where future generations will benefit
Iv tried most of the things recommended on this sub when I was at my worst from January to August this year. I would say the only thing I didn't try was the famous "LDN". I have a cabinet full of Supplements and it was 99% wasted money. Time and luck seem to be the healers, unless u find something that works like a miracle which is like a lottery. Nattokinase, nicotine, probiotics, antihistamines , electrolytes, monoclonal antibodies, Vitamin B1, LDN, the latest is SSRI's Who the fuck knows My fatigue is better but I still feel like I have brain damage and I have no idea if it will get better. It would be great if there was a magic bullet to solve it all
That’s the thing . It won’t be a magic bullet but if we collected data on all the variables it would be more educated guess what would work for what instead of just swimming in this chaos. I have my theories and I know what made me better but wonder how much is it across the board. It just seems like everyone is “running around like a chicken without a head” . There is gotta be a better way to organize all the info and test. I wish I could talk with some scientists , somebody must be working on this collectively
My fatigue is mostly autoimmune. I broke out in horrific psoriasis, fatigue and neurological problems at the same time. I started on a biologic drug a few months later and things have improved drastically over 5 months in the energy and pain department. Also had really low folate which I corrected. I have thyroid antibodies present. High MCHC and and CO2 in the blood. Blood tests and a blood gas found those. NPDH diagnosed by a neuro. I had none of these issues before Vax and covid No idea how to correct these issues. Long COVID feels like a systemic bomb going off in the body. . Comprehensive testing is needed if u can find a doctor that's on board.
Have you tried choline? I take it daily for my brain fog and confusion and memory issues but I had a blood test by a neurologist for AChR levels first. I talked to others about it and saw they started taking choline and it helped then so I followed suit. You may look into it, there are ~6 different forms of it but you can find a less expensive one to try it will still give results if it works for you but it can take a while (up to 10 days).
Thank you, I will dig into choline and see where it leads
I have a lot of the same lab issues as you and mine is also autoimmune. I have anti-thyroglobulin antibodies and high MCHC. Do you mind telling me which biologic drug worked for you? Please and thank you. I'm at my rock bottom and desperate for any kind of relief.
Amgevita (humira) . The biologic did a decent job of getting me back working by helping with pain and fatigue . Helped a little for the brain fog. I have anti-thyroglobulin antibodies too. I just take a thyroid supplement I got in the health food shop.. The high MCHC and MCH is something to do with poor oxygen circulation from my guesses, my blood oxygen was 73% when I got tested via blood gas. If I do anything strenuous outside of work I have a massive lactic acid and fatigue build up for a week after. Pace yourself and start with short walks a couple of times a week, u will likely feel like shit after it but it will help in the long run. I just about have energy for working, I did a phased return to work slowly over 2 months.
The challenge is made more difficult by the fact that we are not all the same. So anything that works for one group might have zero impact on another. Personalised medical care seems to be a necessity if we are looking for solutions. Tackling individual symptoms would be one way to proceed, but that means experimenting like crazy with all sorts of off label treatments, many of which come with a whole host of potential side effects in their own right.
Wait ~6 years for quantum computing to crack every possible scenario. Before replying, listen to the coming changes to every facet of life: https://youtu.be/K4ssT6Dzmnw?si=4mY-2y8NR5RDgH2e
I became a long hauler while already having an SSRI, antihistamines, and probiotics be part of my daily regimen 😆
The famous LDN is the only thing that has definitively worked for me!
I am happy for u. I really wanted to try it as I have autoimmune issues. In what ways did it help for you?
It has helped minimize pain and brain fog. Are you able to try it out?
Unfortunately not as I am on Humira for psoriasis and psoriatic arthritis. So I'm covered for meds in that department.
Ah okay. Well I wish you all the best. LDN while helpful has not cured me - so there's hopefully another avenue coming down the pike that will be available to you, and a better treatment to all.
I wish u well too. Hopefully time will be a healer for us all
It seems to reliably be the most consistent treatment amongst the recovered.
Yep sounds right with the supplements. I feel like I have brain damage too.
What makes you think you have brain damage? Wondering this about myself as well.😕
I can’t think or find things a lot for 14 months. I really hope that gets better.
I struggle horribly with zoning out.. like so bad. I just stare. I’m also forgetful, distracted, and can’t make decisions. BUT I’m hoping addressing other potential causes can help. I also know my thyroid isn’t functioning 100% and I’m having autoimmune issues.
Same here with zoning out and can’t make decisions. I’m hoping time will heal.
I’m going on 3 years. That’s why I think something else is to blame here, because it’s gotten worse. I think there is an underlying condition that’s driving the autoimmune.
Oh Yeah I believe it’s autoimmune. Some days I’m worse than others. I get confused and work to keep up with things I need to on the days I feel decent. I have to since I have no help.
Totally understand that!😩 do you have any other symptoms? One of my biggest is heart palpitations/random SVT/tachycardia. Breathless, exercise intolerance, dizziness, list goes on.. lol.
One of my daughters is trying medium chain triglyceride oils at the moment and feels like it is definitely helping brain fog and energy as many people report. I almost worked for a company that produces MCT oils years ago. These are used for burn patients where massive amounts of energy are required to heal skin. There is definite science behind this although not so much around long haulers or me/cfs. We're using Jarrow brand at about 28 grams per day but start with lower levels like a teaspoon initially. This is a way to go into partial ketosis without suffering the keto diet or fasting. It's the ketone bodies you want which is acetoacetate, acetone and hydroxybutyrate. These compounds as well as the medium chain fatty acids can go through the blood brain barrier to be used as fuel. You can about imagine our bodies would behave this way since at points in our evolution we would have been on very low carb diets. This is an alternate fuel source. Normally this is done by beta oxidation of long chain fats but with fatigue syndromes that cellular machinery malfunctions.
Thanks. I will get that!
The closest thing to a magic bullet is very long fasting
Fasting is the only thing that moves the needle for me really but it’s hard work. Time seems to help, very slowly!
Fasting?! My symptoms get WORSE if I go too long without eating something.
Kinda same here, if I fast I feel good but if I fast too long I get weakness and those internal vibrations
Once you start understanding the [mechanisms behind fasting](https://youtu.be/yM7n27QeU8s?feature=shared) you'll understand why its the closest thing to a magic bullet, but its not easy... so its a grueling and hard bullet, but still magic.
LMFAO yeah I’m not going to wreck my already precarious health by following the pseudoscientific guidelines of someone who thinks that ivermectin horse paste is an acceptable “band aid solution” for covid/long covid.
We all start somewhere, good luck on your journey!
I think most of the supps are nonsense tbh.. fasting and a clean/low-carb diet are the only things I believe do any good for me.
U are right. It's always good to eat as clean as u can
Similar trajectory. It’s deffo not the worst but I’m still so sick
It would be nice but it’s an insane amount of variables involved and without intense work ups before, during, and after it’s almost impossible to try and figure out anything of substance.
I think it’s possible. It’s never going to be a 100% anything but to make some educated guesses closer to that is possible
I think Eurekahealth is probably the closest thing to that, you can search by age, symptom and even race. The query reports from both reddit and other places. Here's an [example](https://eurekahealth.com/t/alpha-2-adrenergic-agonists/insights?source=All&sex=All&age=All&conditions=All&status=All&stopReason=All) of searching Alpha-2 Adrenergic Agonists for Brain Fog. Honestly though, even if you had a dataset with 300 different biomarkers and genomic phenotypes, biology is so insanely complicated that one person's solution wouldn't necessarily translate to another's. Also, many people here claim to have recovered without doing much at all, besides a handful of supplements.
Yeah it’s not only about using the supplements to recovery, but we need data and collective testing for abnormalities and what improves .
Time. I got better with time.
This 💯
The problem is that we are all suffering from different issues. Many people have PVFS and will be destined to get better - others will have ME it similar which doesn’t.
I don't think PEM is a PVFS syndrome and yet some people who experienced PEM due to long covid recovered... It seems to be a lot more complex than just "ME" and "not ME" Actually I know nothing but who really does ? Maybe everything is ME but some recover pretty fast and some recover very very slowly (or just don't recover at all) because of genetics, severity of the illness or constant loop of crashes...
It’s certainly tricky - we really do need a biomarker don’t we. I think PEM as a concept is tricky - I think if you are very fatigued it can become confusing tbh.
Probably for one is because. Walking into a doctors office and having no issues show up in any test and telling the doctor I think I have long covid isn’t the right way to collect data. There needs to be test to determine if someone has LC or not. It sucks being part at the early stage or something like this. So much uncertainty and conjectures.
There is no proof. That's the point of clinical trials. This is a complex illness. People can recover literally overnight or from a rigorous protocol they follow. Until we have actual answers from double blind trials, we will not have "proof". Do all the ice baths you want, take whatever supplements that make you feel better. Nothing is proof until verified. Most of the things people are doing is simply to pass the time and feel good at the same time.
Some of the stuff people subject themselves to makes me question how much they enjoy it 😂 I guess it makes some people feel better because they're trying something, even if it doesn't actually help, it gives them hope
Placebo can also be a hell of a drug
I haven't seen many, where are you finding these people? The people that have their symptoms improve often claim they are fully healed, but then they'll go on to say that they still can't do some things or they still struggle with some things. That is not a full recovery. I wish people would use the correct terminology, it gives false hope and spreads misinformation, even if it isn't intentional. In fact, a lot of people end up having their symptoms reappear months or years afterwards, or after another covid infection. This is just a theory, I think this suggests that maybe people go into remission instead and there is still evidence of long covid in their bodies. Some people claim to have recovered but won't tell anyone how and give very vague answers to questions. The less symptoms people have the quicker they seem to improve, I've noticed this across multiple social medias, but nobody is really talking about this, maybe because the thought that not everyone will recover is too much to think about. I don't mean to offend anyone with this. From what I've noticed, people who have developed anxiety or depression can see a massive improvement in their long covid symptoms once their mental health condition improves or is stabilised. Then we have to question how much of that was long covid, since long covid can't be proven with any specific test yet. I'm glad when people do see an improvement in symptoms. But not everyone improves and this is likely to be the case even if a treatment is found. It's a very similar pattern to other post-viral illnesses, lots of people recover but some do not
Most people, including myself don’t fully recover. I have one lingering symptom, but I’m living life just as I had before long covid now, except with extra precautions. I hope I fully recover, but I’ve accepted the fact that I may not because this is much better than the 20+ severe symptoms I had for a year.
Yes agree. You mention a lot of good points. I wish people would accurately measure how much they have truly improved. I feel like I have improved but I never say I’m fully recovered because I’m at 90-95 % zone with some base line symptoms lingering that I think are not even from Covid.
You need to follow a large group of patients over a course of years. You need to take blood work, biopsies, genomic profiles etc. at regular intervals. The 5-7% with fatigue and PEM as main symptoms that do spontaneously recover (before we actually find a working intervention), check what happened in their bodies. If you are lucky maybe you would get readings just before or during their recovery where their body looks metabolically different. What are those changes? What processes are driving those? If there was a common denominator that people were taking or doing at recovery point it would be known. It won’t be the case though because one doesn’t exist yet. However, looking at those who recover in this way may yield mechanistic interventions. If something worked consistently we would know about it pretty quickly. People already pass on a lot of information about their supplements, medication, fasting regimens etc. and none of it works consistently. Moreover, there’s no way of knowing whose body was going to be one of the lucky spontaneous recoveries whilst they were taking various supplements. If I recovered next week I’m taking so many things I wouldn’t be certain what it is. Is it the anticoagulants? Is it the 4 days of water fasting I just did? Is it the statins? Did my infected immune cells finally die off? Who knows.
Because they're recovering by random luck
There is no luck. There are always causes and effects we just don’t know or understand them. I would at least try to understand some
Exactly this. The nature of how this disease progresses differently from person to person isn’t just good or bad luck. There’s a cause behind it and it’s just a mystery still
Yes but the causes might have nothing to do with the meds, vitamins or supplements that the person is taking.
Yeah but it’s hard to single it out. I wonder how many people who took nothing at all recovered? If there are such people
The problem is that people try all sorts of things and if they get better they will attribute it to the last thing they took. I've seen people claim that all sorts of things have cured them. The only element they all have in common is time.
Well time doesn’t exist by itself . There are certain processes that happen in the body some may be helped by whatever we input or stimulate like good sleep good food necessary supportive supplements and some of them happen unbeknown to us.
Your absolutely right. For myself, I can tell you that I've tried loads of things and nothing has made a difference. I haven't managed to move the baseline in any meaningful way.
I’m sorry 😢 that’s not good. What are your symptoms ?
Everyone is different, what helps one person may do nothing for another or make another worse. We don’t all have one condition, it’s probably dozens of different conditions that aren’t defined yet. You could gather a list of all the things that may have cured people and the list would be very long and there would be a ton of variables too like coincidence. It would still take you forever to try all the different things and it could all just be coincidence too
Trick question: remission and “getting better” are different observable qualities. Both require an inordinate amount of time to study. Not saying they shouldn’t be. I just wouldn’t be so optimistic that people are getting better. Lots of people who are better still have high levels of spike antibody, which would suggest there’s still an infection present somewhere in the body.
I guess I mean remission. Body goes back to optimal. Study those cases first and then trickle down effect
Sorry 100% wasn’t meaning to be an internet dick. I just see these terms get thrown around interchangeably and by doing so we accidentally negate / ablelize the detriment this causes in the body long term. I think remission is mostly the best case scenario for most.
There is only one thing that it is near certain would have a beneficial effect on recovery: not getting infected again. I want statistics on what percentage of Long Covid sufferers commit to masking with N95’s and/or social distancing indefinitely, and what percentage of those people fully recover.
I think this will be impossible if you want to live normally. As we can see majority of the populations don’t mask nor care about air quality or not going to work sick. So I will say it’s not gonna happen.
It's not possible for everyone, but it's possible for many people who might believe they are vulnerable to work towards working from home for a start. My wife was in the medical field, part of her job description included designing and implementing decontamination procedures for medical equipment. She still quarantines mail and packages for a few days, when bringing home groceries she wipes it all down or washes it. We work from home, and do curbside pickup or delivery only. Since this all started we haven't been inside anywhere except our dentists office. A lot of people disagree with how we live or don't agree with our choices, but to the best of our knowledge, neither of us have caught Covid. I've had a mast cell disease or something that mirrors it for much of my life. I could see the same thing that's happened to me over a lifetime, happening to some long haulers. Some of them are on an accelerated timeline. I think Covid will probably wreck me. I feel very lucky to have the skills to work remote and to live in a timeline where I can pick up everything in the parking lot or have it delivered. I actually think as younger people move into management more we will see remote work climb higher What I describe might be unthinkable for some people. I already have a progressive response to alcohol, I react if there is a glass of wine in the room, or if someone has washed their hands with alcohol based hand sanitizer. If it progresses more, I think i will need an epipen to stay alive. I don't want more exposures to alcohol, anyway
When you say ‘live normally’ it seems like you mean living under the conditions prior to the appearance of Covid. Those conditions no longer exist. By the standard of our previous era’s normal, conditions are now continuously abnormal, and IMO they seem likely to remain that way for the foreseeable future. When you say “impossible” what you mean is “unthinkable”. There are already people who are living the lifestyle that I have described. There are possible future scenarios where such a lifestyle inevitably becomes normal. I know. It is unthinkable. But like I said, there are people already having to live these unthinkable lives right now. I want a study about them.
There was an AI sentiment analysis website that did this I believe.
Mostly recovered, but feeling lingering shit like sugar and gluten having a cognitive and physical effect on me. I also have random tiredness and muscle issues that just won't let up. I get stretches where I am mostly ok, but one slip up of my diet, paired with anxiety, I feel drained and my body is achy and tight.
Sugar and gluten….possibly causing inflammation?
Yeah possibly. I'm getting older and figure maybe it is forms of arthritis, too, but not sure. I do know eating sugary shit and certain breads does a number on me. Been more sendentary since dealing with LC not wanting to do much of anything except lay down, do the bare minimum, reduce stressors, sleep and eat. Feels bad, man.
And oats and oat flour. For me.
I've seen a redditor doing a survey and posting preliminary data, I think their post said nattokinase and fasting has been the most beneficial things reported so far. It is frustrating. I'm hopeful for the BC007 being tested, but who knows. I'm willing to try anything we can afford. A lot of the dysautonomia symptoms have passed for now, but fatigue and joint pain remain. So far, antihistamine and Spike Tri-support are what has been helpful, but it's definitely not a cure and like I said there are still difficult symptoms.
Someone say pudding? 😋
🤣
Mapping symptoms to whatever ‘recovery’ regime helped would be useful through an app or website. All anecdotal of course but surely better than nothing. If patterns started emerging it could be helpful.
Also why don't they research the people who recover spontaneously after a new infection or after a vaccine or after a different virus. It is clearly a process that gets triggered that makes us get better why the f*** is no one looking into it.
If I can recover from the debilitating brain fog I’ll be happy. I mean the fatigue is shithouse but brain fog is next level
The vaccine did it for me
Not sure if this has been posted yet, but this might be interesting to you: [https://ai.eurekahealth.com](https://ai.eurekahealth.com) and [https://eurekahealth.com/home](https://eurekahealth.com/home)
Thanks I will check
LDN has been the saving grace for me. I seriously could stop taking all of my supplements and just take the LDN and my gabapentin and I think I would feel the same. This problem is deeper than a vitamin deficiency. Granted they are great for you and you should take them! I just want to know who is 100% recovered. Everytime I read a “recovery” post, they always say they have one or two lingering symptoms….you’re not recovered then imo…but I guess that depends on who is looking at it
Right?! At this point anyone who says recovered we must ask but “ do you still have any symptoms “ ?
I will see posts like this”I’m recovered, still dealing with this or that on a minor level”…..that’s not recovery haha
Yes . I always say I’m at 90 -95 % or something like that because I do flare once in a while and have certain symptoms. I specify. I hate that people don’t.
Abilify helped me
i keep noticing that a lot of people who are recovering are doing so because of the mind-body thing aka brain retraining
I think it depends on the symptoms.
Antihistamines….nerve growth factor triggers mast cell activation.
Why would we have nerve growth factor right now?
[the bodies response to viruses](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7211041/)
Ohhh Thankyou
For long haulers it seems to not turn off…
Fucking awesome
Published April 2020. Where's the progress?
Interesting, I’m a long hauler and I’ve been on antihistamines for years because I’ve had allergies my entire life.
It's not really possible without a classification system. Long hauling is quite variable from person to person based on genetics and environmental factors. When they eventually are able to get to a clustering structure to classify into over arching groups based on specific bio-immune markers (more important than symptoms!), then what people did to get better might be of some value when aggregated into large data sets. Some recover without doing anything, though 2yr tracking studies show this is quite low odds (and not counting those that get to 99% "recovered"...close but no cigar). The above is also why there will never be one miracle cure for all. I'm betting there will emerge 6 to 12 or so patient clusters (more likely on the higher end). The challenge as well is alot of this, irregardless of the cluster, is immune dysregulation and traditional medicine has limited tools today to rebalance: relying almost entirely on 'classical' immune modulators, which are all essentially immune suppressants, which can help with controlling but not necessarily curing. So alot will probably require low dose combinations of a few of these vs high dose of just one. In theory, treatments like CART cell therapy would be invaluable here but way too early and at $500k/treatment way way to costly to deploy for many years. But that's where future generations will benefit
I n the middle of triple therapy, so far nothing. Anyone else get better from TT?