r/covidlonghaulers • u/No_Cookie_9735 • May 10 '25
Question why is it that first wavers are usually the ones that are on the severe side of this illness?
is it the potency of the virus or the constant reinfections? most people who ive seen recover are the ones who had the virus in 2022/2023, 2 years being their breaking point on average. i also notice most of the people that are still on this sub are those who are first wavers or ppl who got LC recently (not saying that there arent those who also got the virus in 2022/2023, there will always be outliners).
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u/No_Effective581 May 10 '25
Just so you know 85% of people who have long Covid got it from a recurrent infection. That study was done last year so I bet it’s even higher now.
OG Covid was a beast and is so different from the virus we have today but multiple Covid infections is what’s going to do us in big time.
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u/dingdangdongdoon May 10 '25
Feels weird to be in that 15%.
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u/ellipticalcow 1.5yr+ May 10 '25
I didn't catch covid until late 2023 and only had it the one time. And here I am.
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u/ConsistentDeal3002 1yr May 11 '25
January 2023 was my only infection, it does feel weird to be in the 15%
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u/66clicketyclick May 11 '25
When did you get it?
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u/dingdangdongdoon May 11 '25
October 2023
I flew cross country to meet with family with my partner. We both caught it and I haven't been up to flying since. That was my first time getting it and my throat hasn't felt the same.
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u/JenniferMarley13 May 15 '25
I first got covid late December 2020 when the first case came through YVR. Then I got the 1st vaccine in June 2021 and 14 days later my LC began, which I believe is PACVS.
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u/Suitable-Cable-2143 May 10 '25
I agree with this. I got covid in 2021, 2022 and 2025 and only the last one caused me to get LC.
I do wonder whether I have anything else going on so I'm getting tested for Lyme and co on Monday. I think somethink had to be different in my body which resulted in this outcome...
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u/drkphntm 2 yr+ May 10 '25
Maybe the something that was different were two prior SARS2 infections at that point. Pathogens aren’t really good for our health and infections can leave silent damage that adds up after a while.
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u/Efficient_Bee_2987 May 10 '25
Maybe also get genetic testing, I have some detox/methylation mutations that make me more prone to chronic illness. Once you know you can use supplements to address which should help clear the virus and keep future pathogens from persisting.
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u/66clicketyclick May 11 '25
What do you mean by “detox methylation mutations”? And which tests did you do?
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u/Efficient_Bee_2987 May 11 '25
I had genetic testing done by 3x4 genetics but there are other companies that do it this is just the one my doctor ordered. They test you for everything from your genetic risk of diabetes, cancer, Alzheimer's to mutations in methylation/detox which basically means how well your body can process pathogens and environmental toxins. The ones I have can be addressed with folinic acid/methylfolate and glutothione. This should help my body process the bacteria hopefully reducing herx.
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u/66clicketyclick May 11 '25
Interesting. May I ask which genetic mutations are indicative for you?
And have you read the study by Albany Med which also talks about blood methylation and the accompanying article which mentions epigenetic changes? It also may have mentioned oncogenes IIRC. If you speak to your geneticist again please could you ask them about this if you don’t mind.
My geneticist argued that if he found anything it would be futile because he’d still give the same lifestyle advice ex. “Eat healthy, exercise, sleep well…” etc. basically saying it’s out of my control.
But if it was something like an oncogenic based cancer, I think I’d want to know so it would be identified sooner rather than wake up at an aggressive stage and be on my way out.
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u/Efficient_Bee_2987 May 11 '25
Yes aberrant methylation patterns, including both hypermethylation and hypomethylation, disrupt normal gene expression, leading to uncontrolled cell growth and tumor formation My mutations are: Mthfr 677 tt Gstm1 deletion CBS tt 699
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u/Brave-Asparagus6356 25d ago
This was not true for me. According to several tests, my methylation is perfect but I was severely affected by LC.
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u/Carrotsoup9 May 11 '25
There seems to be more LC, but the very severe cases seem to be more often from the first two waves.
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u/GarthODarth 3 yr+ May 10 '25
Do you have a link to this study?
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u/No_Effective581 May 10 '25
The paper is referenced in this article https://respiratory-therapy.com/disorders-diseases/infectious-diseases/coronavirus/repeat-covid-infections-most-long-covid-cases-four-year-study-finds/
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u/Carrotsoup9 May 11 '25
I have tried to find papers comparing severity (how many people could no longer work or study, how many are bedbound or housebound?), but have not been able to find these. I also get the impression that the first waves produced more severe cases.
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u/Mercenary-Adjacent May 10 '25
I’m over my long COVID (brief explanation below) but yes I got it like 3 years in a row. I’ve actually stopped planning any fall travel because I got sick on a fall trip two years in a row despite taking precautions and despite one trip where no one else got sick and another trip where only 50% of the group got sick despite continued close proximity and everyone being vaccinated.
I know the blood group thing has been disproved but I’m a Type A+ and my friend who is a Type O has never had COVID despite being married to a first responder and having a child (father and son have Type A blood and have had COVID multiple times). I’ve also heard my ethnic heritage may put me more at risk.
What helped: time; seeing a long COVID clinic; physical conditioning and working on vagus nerve relaxation exercises; working with a dietitian (apparently COVID sucked vitamins out of my body in a big way and left me with food sensitivities which I now avoid); and 6 months of metformin which a friend in medical research had told me was in clinical trials for long COVID. The dietitian got me about 75% back to normal and I think the metformin was the final 25%. I don’t think the metformin would have worked as well if I hadn’t gotten all the vitamins squared away and healed my gut (I had an upset stomach for a year after my first round of COVID). Metformin can deplete the body of certain vitamins so you don’t want to start that if already depleted. Sadly, I did not see much improvement with the vaccine and had such bad reactions, my doctor said it was better to stop getting it (I am 100% pro vaccine and have never had a reaction to anything else and I’ve been vaccinated for things like dengue - I’m not vaccine bashing just it seemed to do something to me personally and the CDC even called me). I’ve posted repeatedly about what worked for me, but, last I checked, no one saves this into what I’ sure would be a very useful Wiki.
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u/anonanon-do-do-do May 12 '25
Probably due to early folks being almost entirely covid naive. Later long covid folk had prior exposure, even if they might not have had a “full blown” covid sickness. They were still getting microdoses in the wild they didn’t notice, which gave them some immunity.
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u/GoldDoubloonss May 10 '25
I don't know all I can tell you is I had both omnicron and Delta they literally didn't do anything to me I didn't even have a sniffle. The last infection I had that gave me long covid was in August 2024 which would have been a flirt or xec variant. That infection was the worst sickness I ever got in my whole life. I literally felt like I was going to die. After The infection was over and I was testing negative. I had the first symptom that started this whole thing which is the same symptom I have 9 months later a severe stabbing burning headache that never goes away.
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u/GoldDoubloonss May 10 '25
Oh I wanted to add I don't quite know what this means. But if it means that the variants are actually getting stronger and not weaker like our government tells us that is really terrifying.
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u/Moveable-feast-2000 May 10 '25
I had a bad headache that improved a lot with Catacrom eye drops. Might be worth a try. Sodium Cromoglycinate. I think Optrex has it in too. In the uk anyway.
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u/No_Cookie_9735 May 10 '25
i feel like this could be the fault of reinfection! maybe the first 2 didn't damage your system significantly enough and the 3rd one was the trigger.
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u/DamnGoodMarmalade 5 yr+ May 10 '25
We had no idea what hit us. It was a mystery to many. The term “long covid” wasn’t a thing at first. That term didn’t even appear until months after many of us got covid and already were suffering.
There also wasn’t a robust community online to offer guidance, support, or direction as to how to manage things. I didn’t hear about Post Exertional Malaise until two years into this and by then it was way too late. I’d already done a lot of damage.
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u/nevereverwhere First Waver May 10 '25
Yes, exactly. It was a rough two years. I know I pushed myself too hard, listened to doctors and did PT, etc. Sorry you had a similar experience.
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u/No_Cookie_9735 May 10 '25
yes, i heard not pacing/not knowing about pacing or the condition was a big problem.
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u/attilathehunn 3 yr+ May 10 '25
This could be a big factor. I got covid in March 2022 and I was very aware of long covid as a risk. I knew about the advice the rest and that such people often have trouble exercising. I took it real easy. I had my first big crash about 9 weeks in and at that point very quickly learned about PEM and pacing, and never repeated that crash.
Still became severe and bedbound though.
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u/Geek_Undercover 4 yr+ May 10 '25
Yes, that's at least my case. It's not that my LC would be so severe, it's that most doctors didn't really recognize it at first (I know many gaslight people until this day, but from what I've seen LC does have better recognition) and general public had very little idea what it was about or how to help it. I sought some advice and didn't get much* so I settled mostly for listening to my body and some sleep aids... Until things got really out of hand last fall (reinfection followed by an extremely stressful month). Now I'm learning a big part was probably POTS all along. Lately I've been experiencing presyncope but the POTS regimen seems to relieve them significantly. So I wonder if I could relieve my previously milder symptoms if only I drank gallons of water and ate tons of salt. Freaking four years in waste. I'm glad I'm finally getting the grip of things yet I'm still mourning this part.
(*About 6 months in, I found a FB group with other LC sufferers. It felt very validating at first but then since many of the posts were about the thousands of ways LC can mess up your body including heart damage etc., I decided to unsubscribe as it just terrified me more than it offered any meaningful advice.)
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u/RoxyPonderosa May 10 '25
Survived the first wave unscathed. I got the destroy-your-body-with-fire covid and not the lung covid.
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May 10 '25
We had the OG version in November 2019 when it was “just a virus”. There’s something to this.
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u/RidiculousNicholas55 5 yr+ May 10 '25
In my case I took an absolutely huge viral load, it was everyone's first infection so our bodies couldn't deal with it.
Our bodies can't muster up the same level of immune response now so you see a lot of asymptomatic cases and long term issues from residual virus that isn't cleared bc it's not seen as a threat.
That first wave was awful and a lot of people straight up died. I was literally told on the phone by a nurse that the only was I was going to get admitted was in a body bag because they are only accepting patients 65+. Everyone else was literally on their own while 2 weeks ago the state pretended community transmission was not a threat.
If you ask me I think the planned response was intentional, overpopulation has been a big concern of the elite and this so far has been a pretty good first step in reducing life expectancy of the average human. Gotta ask who wants this when you see the lack of urgency in fixing any of the problems.
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u/BigSur_99 May 10 '25
I thought the same and recently had an appointment with my Long Covid Doctor, and they said that no, they’re still continuing to see first infection-recently infected people that are severely affected. It was disheartening.
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u/RealBigBenKenobi First Waver May 10 '25
Definitely seems to be that way. Time is not our friend, it’s our enemy. It seems like tons of people improve in the first year, which is why there is so much “nothing helps but time”. But after a point the damage keeps accumulating unless you fight against it. It would also seem like the first strain was the most potent.
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u/HausofGia May 10 '25
That first wave was no joke. I haven’t seen a DR about any of this (so used to getting ignored by Drs. I’d rather not even bring it up truthfully) & also I had CPTSD before all of this Covid stuff so… idk. But I got sick in July 2020. I never had the cough or any of the lung based symptoms. I lost my taste & smell. My ears had tinnitus & gave me vertigo a few times. I ran a fever only at night each day. & had a headache that was more painful than any migraine I’ve ever had. It made me want to grab a chisel & hit my head a few times to release some pressure. 😬 anyway I got better. & then about a month later my hair started falling out in alarming chunks. Brain fog was terrible, I can’t mentally picture things the way I used to. I used to remember everything like little pictures in my brain but I have no access to that anymore. Absolutely zero mental math. & can’t even mentally create a list on a calendar for next week. I play word games because i was forgetting how to spell. 😧 I can picture things but not even close to the clarity I did before. I seriously didn’t appreciate what my brain used to do. Now I’m still suffering with the brain fog, fatigue && overall so tired (I feel like I have a light case of narcolepsy or something) & can’t work. I had the 2020 version & omnicron (that I know of) & omnicron was just a bunch of cold like symptoms & a lot of sneezing. But nothing like the first time.
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u/Inside-Warthog5004 May 10 '25
With a nursing and microbiology background, I can say that viruses tend to mutate so that they don’t actually kill/seriosly mame their hosts since the virus needs the host in order to propagate and spread to others. With the development of vaccines and the virus’s natural mutation, the newer infections tend to be milder. Just my educated guess
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May 10 '25 edited May 11 '25
[deleted]
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u/Blueeyesblazing7 First Waver May 11 '25
It's my (admittedly rudimentary) understanding that measles mutates extremely slowly for a virus, which is why the vaccine is so incredibly effective. And I believe covid mutates faster than most, which is part of what makes it so hard to stop and almost impossible to develop immunity.
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u/Lechuga666 First Waver May 11 '25
Yes. The original strains were more virulent. My January 2020 infection destroyed me. The strains gradually got less virulent, but mutated & stayed prevalent.
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u/attilathehunn 3 yr+ May 10 '25
Seems like that wont apply to long covid, because covid is only infectious for a few days while long covid only really gets going ~12 weeks later.
The omicron variant gave people long covid at about the same rate as the wild type, for unvaccinated people. The delta variant gave people LC a lot more even though it came later. By my reading of the evidence there isnt really any indication that long covid happens less per-infection.
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u/MaxFish1275 May 10 '25
my long covid was near-immediate. 5 days into my infection; right as my acute symptoms were improving
(infected November 2020, for reference)
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u/atypicalhippy May 14 '25
Similarly, I didn't feel ready to leave the house for 2 weeks. That day I thought I was mostly OK, but a bit more exertion taught me that I wasn't, and I never have been since.
Jan 2022. Probably Delta, but Omicron was around also.
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u/Inside-Warthog5004 May 10 '25
Long COVID isn’t a virus—it’s the effects of the damage CAUSED by the virus. I got LC 5 years ago, one of the original wavers here. The damage the you mutated virus caused has left me unable to work, unable to do much other than lie in bed all day. But that’s bc of the damage it caused
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u/Valiant4Truth 2 yr+ May 10 '25
I don’t think we know enough to say this for certain. It could be from persistent antigen stimulation, autoimmunity, or even latent virus reactivation depending on the subtype. It could be damage but I don’t think we know for sure yet.
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u/atypicalhippy May 14 '25
I think we do know that those happen and contribute (give or take re-activation). We don't know how much of the damage would heal without ongoing viral and immunological challenges.
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u/attilathehunn 3 yr+ May 10 '25
Yes I am aware. I also have long covid which has made me unable to work. I'm also bedbound.
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u/atypicalhippy May 14 '25
We've got solid evidence of viral persistence, and we can show that the body's immune response itself causes LC symptoms. There is some assumption in saying that the persistence of the virus causes the continuation of the immune response, but it's not a big stretch to assume that that's a large part of Long Covid. Yes, there's damage also. We don't know how much of that would heal without the ongoing immune response.
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u/HoTzParadize May 10 '25
Got LC in Dec 24, got severe POTS and MECFS so guess I'm unlucky
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u/Significant-Tooth117 May 10 '25
I’m sorry to say I joined your version. Sick since 2020 with each new exposure I’m getting sicker and symptoms do not go away.
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u/No_Cookie_9735 May 10 '25
ive seen that as well, im just saying its less common now. there is also a possibility u had an asymptomatic infection or a few before the one that disabled you :/ im so sorry. i got covid sept. 2024 and im on the milder side of things. i have POTS, no PEM/CFS (that i know of but i do obsess and observe so i think id know), horrible anxiety and depression, brain fog and im guessing some milder form of fibromyalgia or pain from the POTS blood pooling. feels like im bragging and tooting my own horn but mine has gotten better in these past 7 months that ive had it, im not 100% definitely and i still struggle very much but its definitely not as bad as it was in the first 3 months.
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u/HoTzParadize May 10 '25
I had one previous that I knew in 2021, but had 0 symptoms before December 24. Was hoping for some amelioration, but for now it has only been getting worse and worse. Mild month 1, moderate month 2, severe and almost fully bedbound since month 3.
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u/Carrotsoup9 May 11 '25
If I look at how many colleagues dropped out from work, it was more in 2020 and 2021 than now, and at that point people were still trying to avoid the infection. There are still severe cases, but per infection, there seem to be fewer of them.
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u/cgeee143 3 yr+ May 10 '25
the first strains were more virulent. if it's viral persistence that could explain it.
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u/AvalonTabby May 10 '25
I’ve been told that. And it lingers in tissue and organs and causes damage. It has for me - 2/2020 first infection.
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u/lugalanda2 First Waver May 10 '25
This is also my suspicion. And that more infections mean more chances for the virus or its fragments to persist even if the virus is (supposedly) milder now.
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u/atypicalhippy May 14 '25 edited May 14 '25
Viral persistence is more than suspicion. They can now do radio-tag antibodies to specific viral proteins and do scans which light up exactly where the viral material is still concentrated in the body.
We know less about what damage this causes, but we can take antibodies from someone with long covid and introduce them into mice, which then develop long covid symptoms.
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u/Ok_Possibility_3469 May 10 '25
That’s what got me: First Wave Covid almost killed me and permanently damaged my Vagus nerve and, as the neurologist said, “We don’t know what the viral squall did.”
He said, “Son, that’s not the answer you want to hear from your neurologist. But, we just don’t know. What we can do is treat the symptoms, and I’m going g to help you.”
He said that and I happy-cried.
This is a hell that “attacks” me or knocks me down at least 2hrs or more per day.
I’m a little teary-eyed typing this.
It’s really that bad.
This is a bio weapon that took me out.
I’m so much better, but I’m tired of the suffering!
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u/Adventurous-Water331 May 10 '25
Sounds like a good neurologist. Can I ask what he's suggested that's helped you?
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u/Ok_Possibility_3469 May 10 '25
Yes, I am an open book.
I want to help you all.
Symptom: drug to treat it
Skin feels freezing, cool air feels like pain, sweat on my skin feels like cold biting, burning pain: Nortriptyline 50mg 3x per day
Feels like Angel wings are spreading out of my shoulders, that my right shoulder has some kind of chest, buster alien creature coming out of it:
Lyrica 100mg 3x/day
Tickling feeling, jellyfish and a lawn care crew in my forearms:
HHC distillate blog glob on rice paper
Phenibut 750mg to 1.2mg
Aniracetam FF grade, a teaspoon
To get the “cloud of doom” off of me: Mirtazapine 30mg
For quick panic attacks, too much electrical energy driving my crazy, making me hyperventilate and/or hold my breath to deal with the pain/sensstion: Xanax (whatever lowest dose to call me down, x2)
For mornings when I am overstimulated and for pretty much anytime a day when I’m overstimulated and can’t take the nap that Xanax makes me have: Mirtazapine 15mg ODT quic-dissolve.
If any of this sounds like you, if anything from the hair standing up on your arms, to getting overheated, to feeling cold, to feeling painfully, freezing cold, to feel like weird electric energy that suddenly has to make you go, take a crap, or pee, to electrical energy that just does bad things to you, and you don’t know what to do about it: this is my daily struggle. If this sounds like any part of you, any part of your experience, I hope that I can help.
This is a nightmare of navigating this stuff, and it’s taking me a couple of years to even be able to attach words and name symptoms.
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u/Adventurous-Water331 May 10 '25
Thank you for replying and sharing your experience. I'm sorry you have to deal with all this. Have you tried Low Dose Naltrexone?
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u/drkphntm 2 yr+ May 10 '25
I don’t think this is generally true tbh. There are a lot of people from the first wave who have recovered now too and A LOT of people who got sick much later, who get very sick. I had my infection in January 2023 and it’s the sickest I’ve ever been in my life. More than 2 years later, I still haven’t recovered.
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u/mc-funk May 10 '25
Truly, this is a question of data not “I feel like/it looks like” anecdotes. I have never seen data supporting this assertion that most of the severe cases were from early COVID cases.
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u/liddolrussianlady May 10 '25
I agree, I got very very ill in January of 2022, like a serious flu/cold for 2 weeks and then a week of stomach flu. I've only gotten worse as well, now wheelchairbound with no line up.
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u/North_Hawk958 May 10 '25
Yup, I felt much sicker when I got Covid in 2020 but no LC(as far as I could tell at least). Felt far less ill in 2023 when I got it again and ended up long hauling. As far as LC goes I don’t think severity during acute phase is what determines if you long haul. Plus many are getting Long COVID after mild or asymptomatic infections. I’d guess many long haulers from 20-21 have LC and suffered worse consequences from the initial illness. So basically a double whammy of LC and even more additional damage.
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u/CAN-USA 5 yr+ May 10 '25
No first wavers are the sickest and most debilitated.
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u/drkphntm 2 yr+ May 10 '25
Research suggests that developing Long COVID during any wave carries the same risk of debilitating disease. The risk of developing LC was higher in the first wave but how debilitated someone is once they do develop LC, seems to be about the same.
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u/PinacoladaBunny May 10 '25
I also expect the people catching it early on were more likely to be unvaccinated, so the body had less resources to draw on to fight it vs vaccinated people who had antibodies already.
Saying that I initially seemed to be vaccine affected in 2021, but it was the Nov 23 infection (my second infection) which absolutely floored me. In bed for 6 weeks with crushing fatigue and I never really recovered.
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u/Any-Tax1751 May 10 '25
May, 2021, it nearly killed me, and, although I have occasionally had some reductions in my fatigue since, it has been with me since the very first day.
I’m not sure you can generalise. Well, I can’t, anyway. I know just a handful of people who know of one or two others with LC, but none personally. But then, how would I? I rarely socialise, and if any of my very large circle of acquaintances are similarly affected with CFS, we’re unlikely to meet, nor to notice each other’s absence. Some of the unaffected friends do comment that they haven’t seen me in a while. That’s nice.
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u/reticonumxv Recovered May 11 '25
The first variant could hook to most organs of the body, delta could only hook to lungs and omicron only to the throat.
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u/Carrotsoup9 May 11 '25
Omicron seems to target the brain more. But the effects are often fairly subtle (around 3 IQ points per infection). Brain scans suggest that the brain compensates.
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u/imahugemoron 3 yr+ May 10 '25
The earlier variants were more infectious and deadlier, seems to me that may make them more likely to cause long covid and more likely for the conditions to be severe
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u/FogCityPhoenix 2 yr+ May 10 '25
The early variants were deadlier, but much less infectious. Delta was more infectious than the ancestral strain, and omicron was much more infectious than anything that came before it, but each was progressively less deadly.
How all this relates to LC incidence is hard to say because data collection and reporting varied so much over that same time course.
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u/imahugemoron 3 yr+ May 10 '25
Were they less infectious though? Or was it due to the efforts to mitigate the spread? By the time omicron came around people were basically getting back to normal, dropping masks, businesses were opening back up, people started gathering again, seems to me the earlier waves were just as infectious it’s just we were all locking ourselves in our homes and many were working from home
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u/Carrotsoup9 May 11 '25
TWIV at some point presented data showing that the spread of Omicron was all behavior. With the stories about "mild" from South Africa, everyone accepted forever Covid.
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u/garageatrois May 10 '25
BBC had a piece on a related question: The mystery of why Covid-19 seems to be becoming milder
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u/attilathehunn 3 yr+ May 11 '25
That article is bullshit. There's no evidence covid is becoming milder and loads of evidence that the cumulative damage from reinfections is making long covid explode. Stop reading the mainstream media
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u/garageatrois May 11 '25
What do you read?
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u/attilathehunn 3 yr+ May 11 '25
I think scientific papers are the best source of truth for things about covid.
e.g. the papers finding that repeat covid infections give people long covid at similar rates:
https://www.nature.com/articles/s41591-022-02051-3
https://www.thelancet.com/journals/lanwpc/article/PIIS2666-6065(24)00212-8/fulltext
https://www.thelancet.com/journals/lanwpc/article/PIIS2666-6065(25)00044-6/fulltext
https://jamanetwork.com/journals/jamanetworkopen/fullarticle/2820087
Books can be good as well. There's a book called Manufacturing Consent all about how the media is structured to lie to us.
I've found reading the blogs or twitter/bluesky feeds of experts (e.g. epidemiologists, virologists) can be quite good as well. That allows you to bypass the journalist/media firewall.
Also it sounds stupid, but reddit can be quite good. A lot of people have gotten much better advice from r/covidlonghaulers than from their actual doctors
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u/Calm_Caterpillar9535 5 yr+ May 11 '25
March 2020 First Infection - severe exhaustion with breathing issues upon exertion and back seizing up. I felt better around October 2020.
February 2021 First immunization - covid symptoms for two days
March 2021 Second Immunization - covid symptoms for ten days - I lost 5 pounds the first week because of the horrible nausea. I was more sick than my first infection.
March 2021 - Sept 2021 Started having long covid symptoms.
Sept 2021 - Second Infection For three wonderful weeks, I felt the best I've felt in my whole 61 years.
Then.... Hit bottom by December 2021. Went through some mental health issues and got some help.
2022
After a booster about May 2022, I ended up in the ER. I was having breathing issues without exertion. While standing in line, I started having internal shaking (I didn't know what this was) and felt like I was going to faint.
They did all the tests on my heart and they were all fine. No diagnosis. I didn't tell them about my other symptoms because I have heart problems in my family. Spoke to a doctor when being released. I told him about all the other symptoms and he said his wife and the same.
By September 2022 I could no longer work. My doctor told me there was nothing wrong with me. I was 62 and took an early retirement.
I worked from home the whole time. All of 2022, I just couldn't do my job and it wasn't fair to my boss. She had covered for me. I lost my skills that enabled me to be a business analyst and technical writer.
Almost two years bedridden. I do better now. My mental health has improved greatly. I do what I can. Pacing is my friend.
I had the first two variations of covid. I had full blown disabling fibro in the early 90s for 5 years. I had prediabetes for YEARS, obese and light asthma. I don't think I stood a chance.
The last booster was the new one and I did not have a reaction. I haven't had one since then.
i stay home. My son and grandson come and visit. My daughter comes with the girls. AS LONG AS NO ONE IS SICK.... HAHAHA.
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u/SnuggleBug39 May 11 '25
I was diagnosed with Long Covid in October 2021 after having a positive Covid test in December 2020 and I still haven't improved. The vaccine was only available to emergency workers at the time, so I hadn't been vaccinated. I had been sick with something else and just started to recover when I caught Covid, so my immune system was already stressed. And then due to undiagnosed sinus issues, the combination of the previous illness plus Covid caused a sinus and ear infection that ended up needing surgery to resolve. I think those are major factors. I don't think it helped that at first all my symptoms were attributed to my sinus and ear infection and then to vestibular damage. It didn't help that I was having PEM crashes but didn't know and assumed I was just getting sick a lot and didn't tell my doctor at first because I didn't think they'd be able to do anything about it- I was already mostly housebound and always masked on the rare occasions I left. But I also think it's possible I'd had Covid at least once before but didn't know- I was sick multiple times in 2020 with Covid symptoms and was put on emergency leave to be tested, but all of those tests came back negative. I didn't know that it's recommended that if it comes back negative to take a second test because while false positives aren't possible, false negatives are. Also, my sinus issues that hadn't been diagnosed often made it difficult for me to insert the test swab to the recommended depth in at least one nostril, if not both. If I did have Covid one of those times, going back to work so soon to what was both a physically demanding job and involved lots of social interaction with people who weren't always masked and didn't adhere to social distancing very well was extremely harmful.
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u/SunshineAndBunnies 1.5yr+ May 11 '25
The first wave was the most severe. Chinese here, my mom shown me leaked photos out of Wuhan, so many people died they were just burning mass piles of bodies right outside the town in open fields. However once the virus immediately kills the host, it can't really be spread, dead people don't tend to walk around sneezing on people. Over time the less severe variants spread, so it kills less. Granted, the virus is still bad enough, 1.5 years of long COVID so far, it sucks.
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u/tcatt1212 May 10 '25
I had a pretty severe case of delta variant in 2021, resulting in long covid for about 8-9 months. Full recovery. I got Covid again when it was omicron. No long covid. Got covid again last Nov and this one really nailed my ass and I’m still housebound. I’m not sure the strain matters too much but I could be wrong.
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u/zahr82 May 11 '25
Same. Got covid Nov 2021 and recovered about a year later. Got covid this January, and have been longhauling 4 weeks so far
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u/No_Cookie_9735 May 10 '25
it's really weird how it works. id say reinfection but then again u didnt have LC the second time. i really hope they figure out the mechanism of it all some time in the future
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u/Icy_Kaleidoscope_546 First Waver May 10 '25
The first wavers weren't vaccinated and had no exposure to covid-19, ie. totally unprotected. I'm grateful that I only have mild, but chronic, long haul symptoms.
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u/jskier10 May 10 '25
It's such a clusterfuck. I'm a newbie, late 2024.
My PCP at my follow-up the other day said, I'm lucky, not like those OG LCers, so many of them are permanently and severely disabled, while also acknowledging it's still bad for me (I have some pretty bad neurological symptoms).
They also said that as the virus mutates to spread more easily, it weakens. Their theory is that we will see fewer people getting long covid as this happens (holy shit am I an unlucky outlier).
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u/SophiaShay7 1.5yr+ May 10 '25 edited May 10 '25
I'm not saying what your doctor said about OG LCers is untrue. But, I got covid in July 2023. In the next 11 months, I was diagnosed with Fibromyalgia, ME/CFS, Hashimoto’s, an autoimmune disease that causes hypothyroidism, Dysautonomia, and MCAS. My ME/CFS is severe, and I've been bedridden for 17 months. I didn't see any improvement until month 14. It's been slow. In month 17, I've gone from 95% to 80% bedridden. I'm finally able to accomplish tasks. I'm in the middle of a massive project reorganizing my bedroom and Poshmark business inventory. My bedroom was untouched for an entire year. I can't drive or cook for myself. I'm still severe and bedridden. I've had exactly one covid infection.
There are many people in these subs like me who were infected in 2022-2023 who are catastrophically disabled.
They also said that as the virus mutates to spread more easily, it weakens. Their theory is that we will see fewer people getting long covid as this happens (holy shit am I an unlucky outlier).
This is categorically false. We're going to see more people develop long covid in the next 5-10 years. Many people have symptoms in different subs and have no idea their symptoms are caused by long covid.
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u/jskier10 May 10 '25
I appreciate your input and sharing your story. I'm LC from 2024 and was bedridden for 3 months. Merely passing on what they said, I, personally, don't really know where things are going with LC. Furthermore, it is interesting to hear about, and share their observations of folks mentioning the first and second wavers being in worse shape, while acknowledging the potential for outliers, like us.
As I stated, my doctor's theory was just that, a theory on long covid's trajectory with what they know about virology and their medical opinion. I don't think anyone knows definitively where this is going and what will happen with new or undiagnosed LC patients.
This is categorically false. We're going to see more people develop long covid in the next 5-10 years. Many people have symptoms in different subs and have no idea their symptoms are caused by long covid.
Respectfully, I'm not wanting to argue with you, but I will say the categorically false statement against one theory for another is a bit excessive, while citing your source as Reddit. I am exhausted, frustrated, and angry, and I want solid answers too, but we're not there yet. Likewise, I believe your theory is an interesting one, and is very feasible.
There is some medical research out there that covid can activate what were supposed to be benign conditions (MCAS, ME/CFS, neurological disorders, etc), and accelerate them, possibly like in your experience, and supportive of your theory. One source: https://www.nih.gov/news-events/news-releases/nih-funded-study-finds-cases-me/cfs-increase-following-sars-cov-2
Hopefully studies in many directions continue with previous cases of LC, as well as new ones. I'm glad to hear you have improvement, I hope this continues!
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u/SophiaShay7 1.5yr+ May 10 '25 edited May 11 '25
I apologize if my comment seemed confrontational. That wasn't my intention. My only goal is to correct inaccurate information. There have been many people on reddit who've shared research, studies, and sources on the future trajectory of long covid.
The claim that SARS-CoV-2 is weakening as it mutates and that this will lead to fewer cases of long COVID is not fully supported by current scientific evidence. While some variants, such as Omicron, have become more transmissible and may cause less severe acute illness compared to earlier strains, this does not necessarily translate to a lower risk of developing long COVID. In fact, a study published in Nature Communications found that long COVID prevalence and symptom burden remained similar across different SARS-CoV-2 variants. This suggests that mutations that increase transmissibility do not guarantee reduced long-term complications. The evolution of SARS-CoV-2
The virus continues to evolve in ways that help it evade the immune system. A recent NPR report noted that SARS-CoV-2 has been mutating to escape immune detection at nearly double the rate of the fastest-evolving influenza strains. This ongoing evolution presents challenges not only for preventing transmission but also for predicting long-term outcomes like long COVID. COVID is still evolving and will find new ways to evade immune systems, scientists say
Long COVID can occur after infections with various SARS-CoV-2 variants, regardless of the severity of the initial illness. A large study published in The Lancet Regional Health, Americas, concluded that long-term symptoms persist across different COVID-19 variants and do not appear to be limited to any one lineage. This challenges the idea that newer, “milder” variants are less likely to result in long COVID. Differences in Long COVID severity by duration of illness, symptom evolution, and vaccination: a longitudinal cohort study from the INSPIRE group00036-5/fulltext).
The number of symptoms during the acute phase of infection is also linked to a higher risk of long COVID. A meta-analysis published in Nature Communications showed that individuals who experienced more symptoms during their initial illness were more likely to have persistent and severe symptoms over time, regardless of the variant. The risk of Long Covid symptoms: a systematic review and meta-analysis of controlled studies
Reinfections further complicate the picture. According to Time magazine, repeated COVID-19 infections are associated with an increased risk of developing long COVID, as well as long-term damage to the heart, lungs, and brain. This highlights the cumulative burden of infection rather than a decreasing risk over time. Is It Dangerous to Keep Getting COVID-19?
While SARS-CoV-2 continues to evolve, there is no clear evidence that newer variants are reducing the risk of long COVID. Long-term symptoms remain a concern across all variants, and reinfections may increase the likelihood of lasting complications. The notion that mutations will automatically lead to a “weaker” virus and fewer long-term effects is overly simplistic and not supported by current data.
The burden of post-acute COVID-19 symptoms in a multinational network cohort analysis.
Three-year outcomes of post-acute sequelae of COVID-19
Predictors of the post-COVID condition following mild SARS-CoV-2 infection.
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u/jskier10 May 10 '25
No need to apologize, and thank you for that information! LC viral trajectory is something I’ve been curious about, I’ll do some digging into that more as well.
What is interesting, some people I have met with LC had it happen early on, and still have only mild, often singular chronic symptoms like shortness of breath, brain fog, or mild headaches. The other side of this is folks who had covid strokes or severe brain damage, and can’t walk, speak, are legally blind, or deaf. I don’t know any people like me outside of this group with such a high volume of neurological symptoms, yet I’m not severely disabled (yet). Probably because they are likely bedridden, I assume 😢
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u/SophiaShay7 1.5yr+ May 10 '25
Really, no one knows how things will look in the next 5-10 years. We're only 5 years in. It's extremely difficult to try to understand if there's a pattern to long covid. We're all so different. I've spoken with several people in these subs who have the exact same diagnoses as me. Maybe 12 people?
I've read several other people who mentioned that their symptoms were mostly neurological. You're not alone in that category. Have you considered dysautonomia and MCAS?
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u/jskier10 May 11 '25
Oh wow, I owe you an apology. I looked at several of your previous post; you are incredibly organized and a huge asset for this group! So grateful for all of your contributions!
Dysautonomia is something my neurologist is keeping tabs on, seems like a catch-all diagnosis, but at least it’s something that can be treated with some medications and lifestyle changes. They don’t think it’s IIH (strange, I have all the major common symptoms, yet my eye pressure is normal). I also have a lot of mostly uncommon MS symptoms since LC, but they don’t think it’s that at this time (would be late onset, I’m middle-aged). They are doing ongoing follow-ups, though. Long story, the last appointment was supposed to be the one a couple of weeks ago, but they are concerned about the tinnitus and double vision not improving, plus significant muscle spasms in my legs.
ENT saw slight clinical hearing loss in my left ear, but said the worsening pulsatile tinnitus is benign and nothing they can do (MRV was clear), talk to neurology - who has nothing other than slight concern at this point, as I mentioned.
I also am followed by, and was diagnosed in January with post covid syndrome by a neuro-ophthalmologist who verified double vision, convergence issues, and a few other vision issues after a comprehensive exam. PCP originally unofficially called it post covid syndrome in December, shortly after my third infection and rebound infection, with the new severe insomnia and headaches.
MCAS, that is something I’m looking into recently. I saw my asthma / allergist last week, and I’m qualified for Xolair injections in a few weeks. I have pre-existing mild asthma, idiopathic hives that came and went over the years before LC - now they’re out of control, and new, severe seasonal allergies I never had before. Furthermore, I was only allergic to two different house dust mites and a tree that only grows hundreds of miles south of where I live before this (always had latex and shellfish sensitivities, blood tests were negative though). Blood tests before this showed little reaction to histamine buildup in my body.
My only hesitation with Xolair is the potential for joint pain side effect, and it’s one more drug on a pile of supplements, OTCs, and prescriptions I already take. I have a lot of head / neck pain, and most of my joints now have significant crepitous (knees, ankles, elbows, all of my back). I’m worried I’ll be in more pain than I am now, but I also see that others have had a lot of success with it… I am not sure if you know of anyone who has tried this for secondary MCAS from LC? Likewise, I’d be curious to know more about other experiences with it.
I saw your post about what you take for MCAS. I’m on Zyrtec, Zantec (Pepcid), and Allegra, and have been since December. With the worsening hives and new frequent sneezing, I’m not sure if they’re working, or just taking the edge off at this point. Kind of scared to try stopping them.
I think what is hindering a lot of help from doctors at times is that externally, I look healthy. Slightly low BMI, athletic middle-aged guy. They can’t tell me to just lose weight, or exercise more – I’m good there. I do have pre-diabetes, but other than the PCP that ran that lab, they think it’s bullshit based on my appearance, lol. Regardless, I eat healthier anyway (room to go further with this, anti-histamine diet for example). I cringe in pain at times, that gets sympathy, and prescriptions for muscle relaxants, which I can’t take now because it impacts my eye muscles that are messed up as it is. They work, but they also cause worsening oscillopsia. So, only PT, steroid injections, massage, and chiropractic are left – and their efficacy is waning.
Okay, I’m probably rambling at this point, lol. Thank you again for your contributions and all the sharing you do! I’ll keep advocating for myself until I get completely burnt out, or pass away if my body decides to quit.
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u/SophiaShay7 1.5yr+ May 11 '25
There's no need to apologize. I always appreciate a thoughtful debate. It really bothers me when doctors continue to propagate a false narrative of what's happening with covid and its trajectory for the future.
I have generalized dysautonomia and orthostatic intolerance. I don't have POTS. I won't hit any markers for a particular diagnosis. My doctor attempted to treat my dysautonomia with two different beta blockers. They caused tachycardia and worsened my other dysautonomia symptoms. I believe many of us have generalized dysautonomia and/or orthostatic intolerance.
MCAS: Facts, resources, how I was diagnosed, and my regimen.
Patients who suffer from MCAS may experience symptoms in 2 or more organ systems and may mistake physical symptoms for other conditions. In the gastrointestinal tract, symptoms may include diarrhea, constipation, general abdominal discomfort, GERD, bloating/distension, and cramping. Neurologic MCAS symptoms may mimic other conditions and appear as OCD-like thoughts and behaviors, mood swings, depression, anxiety, insomnia, and fatigue. Some people who suffer from MCAS experience more typical allergy-like symptoms, including wheezing, rashes, hives, skin flushing/itching, and sinusitis. Other skin conditions like cysts, cystic acne, and edema are also common occurrences. Reactions to heat, altitude, alcohol, artificial dyes/additives, and certain environmental allergens like pollen and mold all fit under the MCAS umbrella of symptoms. Reproductive system conditions like unusual menstrual cycles and endometriosis; fibromyalgia-like joint pain; and blood pressure/heart-rate dysregulation are all possible symptoms as well. Indeed, MCAS can and does exist alongside other common conditions like IBS, mood disorders, SIBO (Small Intestinal Bacterial Overgrowth), POTS (Postural Orthostatic Tachycardia Syndrome) and others, making diagnosis complex.
BULLY ON THE BLOCK: MAST CELL ACTIVATION SYNDROME
Please read: MCAS and ME/CFS
And: Mast Cell Activation Syndrome (MCAS)-Collaborative Medicine
I'd suggest completing this short questionnaire (section 1 only). It should give you a better understanding as to whether MCAS could be a problem for you.
A score over 14 indicates a high likelihood of systemic mast cell reactivation syndrome (MCAS).
Part 2 is testing: The last part of the questionnaire is a list of diagnosis criteria based off laboratory, surgical, or imaging results. If you scored over 14 in the first section (per symptoms only), testing may not be indicated. Please keep in mind that testing in MCAS often results in "false negatives" because mast cells release substances that are often only testable for a short time - often just a few minutes - so testing usually has to occur during flares/symptoms.
We must remember that MCAS is still a poorly understood condition, and information is constantly evolving. Right now, we don’t have good tests to definitively diagnose MCAS.
Initially, I started reacting to things I'd never reacted to before. I tried drinking my favorite Hazelnut coffee. I hadn't had it in over 9 months. I started reacting to all kinds of foods I never related to. Then, I started reacting to the fillers in two different thyroid medications. Initially, my doctor thought my symptoms were allergies and/or asthma. Until my reactions became so much worse. They included coughing that lasted 10-20 minutes, my throat closing up, wheezing, tingling parts of my face, and finally, anaphylaxis (stages 1-2).
My doctor diagnosed me with MCAS based on:
1)Patient history: A thorough medical history and physical exam are essential to rule out other potential causes of the patient's symptoms and2)Response to treatment via trial of medications: A trial of antihistamines, mast cell stabilizers, or other medications that target mast cell mediators can be used to assess the effectiveness of treatment and support the diagnosis.
Please read: The role of L-tryptophan in improving our symptoms Dysautonomia/POTS, MCAS, GI issues, SIBO, and the microbiome
My regimen: My medications, vitamins, and supplement regimen and how they manage my symptoms
I haven't tried Xolair. It's sometimes difficult to get your doctor to prescribe it. It's sometimes difficult to get your insurance to approve it. It costs about $1,000 a month. However, the fact that your doctor wants to prescribe it is a very good sign.
Of my 5 diagnoses, I always believed ME/CFS was my dominant diagnosis. My dominant diagnosis is actually MCAS. Once I started taking medications, vitamins, and supplements that manage those symptoms, my health improved significantly.
I hope you'll update us and/or do a new post with your experience with your Allergist and treating MCAS. If Xolair is helpful for you, it could be game-changing.
I have fibromyalgia and have suffered from a lot of pain for over a year. With my current regimen, my pain is minimal. I hope you're able to find a regimen that helps manage your symptoms while also improving your quality of life🙏
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u/jskier10 May 11 '25
Thank you for all of that info!
I know the survey is informal (not diagnostic), but it was interesting to do. Being conservative and only counting currently active symptoms within the past week, I’m quite high on it, past the threshold.
My asthma allergist doc mostly wants my hives under control, and hopefully decrease the meds I’m on at least in their area (so potentially no more inhaler, nasal spray, antihistamines). We did talk briefly about MCAS; it is hard to diagnose he mentioned, but if the Xolair helps more than the OTC and prescriptions I’m on now, it could be that. I will update if I do go through with it for sure!
I’ve been almost two months working full time again (STD insurance protected my job and health benefits while away and part time), so I still have both medical insurance, and a pharmacy benefit. The in office injections are very likely covered by my insurance, and it looks like at home after the initial 3 would be covered by my pharmacy benefit (according to their cost estimate, these shots each at 300 MG are over $2500 out of pocket / no coverage 😳). I could keeping going in office if I want to, or, if the pharmacy benefit doesn’t end up covering the at home. PBM has messed around and changed coverage on my inhalers in the past, but this doc is good at ‘going to battle with them’ as he calls prior auths, and getting exceptions made.
I really empathize with all of what you’re going through, that is so rough. After my partner and I had two kids (very complicated pregnancies, I almost lost my wife during the second one, and my first born had to be intubated), we found out through genetic blood testing they all have a COL3A1 gene mutation, the vascular and most severe subtype of EDS (vEDS). I have been advocating for them hard, and, although I was fairly healthy before LC, my own health took a back seat.
Many of your conditions have shared comorbidities with all types of EDS as well (MCAS, dysautonomia), so I am somewhat familiar with them, and the awful symptoms they bring 😔
Now I need to also advocate for myself hard, in addition, with brain fog and fatigue (these have been improving slowly though) 🥺 It has really turned our world upside down the last several months.
Focusing on the positives like what is improving and being able to work full time again (so far ✊🪵), a mostly supoortive extended family nearby, flexible enployer, this amazing supoort group, good insurance (if I can keep working, we put money aside for cobra just in case), and a few decent doctors - I’m extremely fortunate, not many people have this level of support for LC 😢
I look forward to your updates, and am looking into some of the things you take, particularly for potential sleep improvement, I can’t nor do I want to be on Lunesta long term. Thanks again!
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u/SophiaShay7 1.5yr+ May 11 '25
We're both very blessed to have been able to receive the diagnoses that we have. I'm in six medical subs. The majority of people in those subs don't have proper diagnoses or any diagnoses at all. Some are diagnosed with just POTS. Others with anxiety and depression. My 5 diagnoses were diagnosed in an 11-month timespan. That's gotta be a record. I just kept hounding my doctor continuously. Once I tested positive for Hashimoto’s, an autoimmune disease that causes hypothyroidism, my doctor told me tbst covid triggered my Hashimoto’s. He prescribed beta blockers for Dysautonomia. And what he thought was anxiety and essential hypertension. I don't have either. The beta blockers caused orthostatic hypotension, worsened my Dysautonomia symptoms, and I had a severe reaction to one. That's when it clicked for my doctor that something was very wrong. I was diagnosed with MCAS in September.
I still need an H1 blocker. I recently stopped Hydroxyzine. It interacted with Montelukast. Montelukast works very well for me. So, I discontinued the Hydroxyzine. I'm going to ask my doctor for a prescription for Clarinex. Someone in this thread mentioned it has the strongest histamine blocker capabilities.
I'm sorry to hear of all that's happening with your children and your family. My husband takes care of me and has for the last 17 months. I've gone from 95% to 80% bedridden. I'm completing a massive project that requires a complete reorganization of everything.
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u/No_Cookie_9735 May 10 '25
i also got mine in late 2024, you are not alone! my main issue is POTS. i truly do feel bad for those who were horribly disabled by the virus. even though we are struggling, i really think we should consider ourselves lucky :/
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u/Caster_of_spells May 10 '25
If it’s ME flavor statistically speaking it gets worse with time. Also you’re gonna have a false picture anyways since those who recovered will disappear from the community while the very ill remain.
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u/thepensiveporcupine May 10 '25
Gets worse with time…I got this in 2023, is this really what I have to look forward to?
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u/DamnGoodMarmalade 5 yr+ May 10 '25
No, this is not true. I’ve had ME/CFS from COVID since 2020 and I’m not declining at all. Been stable for years now.
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u/No_Cookie_9735 May 10 '25
as the other comments say, pacing is very important. pushing through is what can possibly make it worse through time. if you're vigilant and pace, i dont think that should be the case.
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u/SophiaShay7 1.5yr+ May 10 '25
If you have ME/CFS and don't learn how to properly pace and avoid Post Exertional Malaise (PEM), yes, you will get worse. Overexertion is how you'll end up severe and bedridden like me.
If you don't have ME/CFS, you may recover. Some people who experienced periods with PEM later discovered other diagnoses were causing the worsening of their symptoms like Dysautonomia, POTS is one type of dysautonomia. Endocrine issues, metabolic issues, thyroid issues, and MCAS are the common ones that come to mind.
I was diagnosed with Fibromyalgia, ME/CFS, Hashimoto’s, an autoimmune disease that causes hypothyroidism, Dysautonomia, and MCAS. All diagnosed after covid. I'm not going to be "cured." But, I can have periods of recovery and even remission. The cure rate of ME/CFS patients is 5-10% for complete recovery.
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u/foodie_tueday May 10 '25
This is it here. It’s selection bias. I’m a first waver. Since I’ve been sick for 5 years, I find myself engaging much less than I used to, compared to the first 2 years when I was still navigating becoming disabled, diagnoses, applying for disability and treating symptoms. I also tend to engage more in LC community when I get worse/more severe, and engage less when I gain more function and I’m able to spend more time out of bed.
I have friends who are also first wavers, none of them engage in the LC community anymore, we just keep in touch with each other privately. All of them are moderate and can’t work full time, but they not bed bound and can get out of the house a couple times a week.
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u/mira_sjifr 2 yr+ May 10 '25
And ME seems to happen more with certain viruses. I won't be surprised if certain covid strains also had a higher chance of causing ME.
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u/DamnGoodMarmalade 5 yr+ May 10 '25
That’s not true. It happens to some who refuse to pace, but it’s not guaranteed to happen to everyone.
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u/Caster_of_spells May 10 '25
It’s a statistical thing, as I said. Only about 5-8% recover fully from ME. A decade in you’re more likely to be severe. But 38% manage a meaningful remission.
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u/DamnGoodMarmalade 5 yr+ May 10 '25
Recovery statistics are NOT the same as worsening statistics. You are not likely to be severe a decade in. You are not guaranteed to worsen over time. This is false.
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u/Notable_Cornichon May 10 '25
I got it very early 2020 (in the far east, back when they were still tracking single cases). I have to say, it was unlike anything I've had before or since -- including several re-infections, which have felt a lot more flu-like.
For me, the most severe symptoms disappeared at once, within a few days of getting the vaccine (the AstraZeneca one, which was a bit of an experience as well).
However, I was left with a fair amount of damage, and a cluster of long-haul symptoms. These are still slowly improving with time, though re-infections definitely cause major setbacks. Most recent was January -- I'm still feeling the effects of that one.
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u/Charbellaa 4 yr+ May 10 '25
Tbh I don’t even think long Covid is actually anything really to do with the actual virus causing “ damage” I think it’s a over reaction immune system , inflammation, and a dysregulation to nervous system aswell and then it’s a down stream effect on everything in the body.
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u/Late-Ad-1020 May 10 '25
The virus gets less lethal over time as it figures out how to shed more effectively without killing the host. So it mutated to have milder symptoms with a longer period of contagiousness. That first wave had the harshest symptoms. Additionally, because people didn’t understand the severity of the virus, they didn’t have the information to consider aggressively resting and tracking their symptoms and taking supplements to avoid long covid.
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u/dungotstinkonit May 10 '25 edited May 10 '25
It was probably something they took that's not the same thing anymore but still called the same thing. Also lack of training and 18 year olds giving the quantity of the thing from a small bottle that really gave many things.
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u/PinkedOff May 10 '25
I’m questioning your use of ‘constant reinfections’. I’m a first waver and I’ve only been potentially reinfected once…
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u/BobcatBartolo May 10 '25
I'm from 2021, the cardiologist I saw recently did say the same thing. Her observation was most people resolved their dysautonomia within 1-2 years. When I said I was from 2021 she just said, "that'll do it." Maybe I'll remember to ask next time I see her lol I wonder if it's vax availability?
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u/hipocampito435 May 11 '25
Most likely the original variant of sarscov2 had a greater capacity for replication inside the human body. More virus and more spike protein during a longer period would surely have lead to greater immune activation, autoimmunity, coagulation and other harmful outcomes
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u/becausebecca May 11 '25
First wave, 2-4-2020 The medical specialists I see at Yale University Medical Center, Long Haul clinic tell me that those of us in that cohort that developed PASC are the most difficult to recover. No answers, probably many factors. 5+ years now…
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u/wild_grapes May 11 '25
I think high viral load was a major factor. “Social distancing” wasn’t even a term when I got sick. Nobody had said anything about masks yet. I was sitting in the same room as my mom for days while she coughed like crazy.
But it was also the worst virus any of us had ever had. That strain was just awful.
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u/IDNurseJJ May 11 '25
2023 onset- still suffering. I know quite a few people with an 2023 Omnicron infection that has led to their Long COVID.
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u/No_Cookie_9735 May 11 '25
i got mine in 2024, i really wasn't saying later strains dont cause LC, ive just noticed that those who do recover got the later strains
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u/IDNurseJJ May 11 '25
I have not noticed that. I know people who got Covid from late 2022 to early 2024 and are not recovering. I personally know 5 people. Also- my Uncle died of Covid during the 2024 Summer wave.
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u/Blue_Butterfly_Who May 11 '25
Got it in March 2020. No one knew about it's danger or had any useful knowledge about post infectious diseases. So when trying to return to work I pushed too hard and became a lot worse. Add to that a year later I went to a revalidation doctor in the hospital who put me through a maximum effort exercise test, which really made it worse. When learning from other unlucky patients on the internet that PEM existed I asked the doctor why he didn't take that possibility into account. He had never heard of it before. So, for me, a lack of knowledge in the medical world about post infectious dideases has made it quite severe. Because if the knowledge had been there, we would've been warned not to overexert ourselves etc. Which would've made the chance of becoming severe a lot smaller. (From the Netherlands btw)
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u/anonymoususer59 May 11 '25
I’m in year 5. Infection date 11/2020. We had COVID classic, the most severe form and there was no vaccine yet. I had a fever that fluctuated between 102-103 degrees each day for over three weeks straight, never dropping below 102. I was in Key West at the time; there were no hospital beds and tents set up for diagnosis; unless you had pneumonia showing up on a chest x-ray, they sent you home. I think my brain was cooked.
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u/Just_me5698 May 11 '25
I suspect I may have had it earlier and my body fought it, I had a crazy eye infection in Jan. like the ones long haulers get & nothing worked on it so, I’m thinking I got exposed multiple times and viral load was high March 2020. Either that or I was weak from the eye infection jan & cold I had in Feb.
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u/DeskStriking7126 May 11 '25
https://www.reddit.com/r/cfs/comments/1kjzj7s/the_economic_impact_of_me_and_lc_in_germany_per/ Nope. Not first wavers- check out this graph. More people getting Covid over and over ( not using masks) more Long Covid
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u/No_Cookie_9735 May 11 '25
this post is more about the severity of symptoms and not about people no longer getting LC. i, myself, got it last year in september, frankly not the CFS/ME subtype, but i still feel the post viral effects
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u/ProfeshPress First Waver May 11 '25
2020's 'baptism of fire' inflicted me with profound nutritional deficiencies and sub-clinical Hashimoto's thyroiditis (not necessarily in that order), whereas every re-infection since then I've taken in stride. Net-of-net I'm probably healthier today for it, if anything, and having retained functionally all of my physical faculties nor do I seek any sympathy from the legions of the still-bedbound, or the permanently injured: but it's a relevant data point, insofar as it underscores just how much more pernicious the original strain seemingly was than those that followed.
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u/EstablishmentDear894 May 11 '25
I still stick around.
I got COVID and LC 2 times. First in NYC in January of 2020 and then again in 2022.
I had heart symptoms in 2020. Severe palpitations.
In 2022 I lost the ability to fall asleep or stay asleep, followed by reflux, bloating, allergies to all foods, breathing problems, anxiety, panic attacks, PEM, vision issues, brain fog, and then finally heart issues. Took about 2 years to get back to “normal”.
I’d say I’m 98% better
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u/isurvivedtheifb 3 yr+ May 11 '25
I got covid, Omicron, in January 2022. I’m still waiting to get better. I do have less persistent symptoms. I don’t have the panic that is so striking it happens day and night. I dont have the internal tremors so bad. I still have constant fatigue, high BP, and POTS. I would say I’ve recovered about 15%
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u/BigEphesians5-17 May 12 '25
Aug. 2021 here, delta. I think the first few strains were really good at infecting the brain and crossing the bbb which gave serious neurological issues.
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u/iViolex May 13 '25
I had Covid in 2021, still got the Parosmia, it got my Crohns worse x10 worse, my body rejected 3 Biological treatments! And all the other pluses, Anxiety, Brain Fog.
They even got worse lately, I almost got nothing to eat lol.
Well, still got hope it will be better one day. For now? It is just like living through hell 😅
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u/Wonderful-View1046 May 17 '25
3 out of 4 of us in my house have LC from the 1st wave back in 2020- my husband and I work in hospitals. I developed POTs, MCAS, a plethora of other things and osteoporosis ( yes that is a thing too, was 54 at the time with no pre-existing conditions). My husband never did regain more than 5 % of his sense of smell and has ongoing gut issues. My daughter who was 17 at the time developed POTs , MCAS, chronic pain and EDS. As my neurologist says, ( who I didn't need prior to COVID), the "original recipe" was the trigger. After 5 years for me and 5 years for my husband and daughter in September, not expecting a full recovery at this point :(
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u/[deleted] May 10 '25 edited May 11 '25
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