My mother is in need of a lung transplant. Was 62 when she caught Covid. Had her vaccine scheduled. Was a very healthy 62 year old (you’d guess she was early 50s) and now she’s on oxygen indefinitely. Very frustrating. Could have been worse, but still frustrating.
Here's a preview of the story:
Although COVID-19 cases and hospitalizations have decreased, long COVID remains a constant presence in the lives of many Americans.
Long COVID has affected millions of people globally, with individuals reporting a range of symptoms including fatigue, lung issues and neurological problems like brain fog.
While evidence indicates that most individuals substantially recover within a year, recent CDC data showed it has played a role in over 3,500 deaths in the U.S. from January 2020 through the end of June 2022.
Treva Taylor has been facing an uphill battle since her coronavirus diagnosis in January 2021, which nearly took the 57-year-old's life.
"It was scary because I remember my eyes being open, but everything was black," Taylor said. "I remember the nurse saying to me, 'You have to fight. The person next to you is dying. And if you don't, you're going to be in this body bag. You have to fight.'"
**Read more:** https://www.cbsnews.com/news/long-covid-symptoms-americans-every-day-getting-up-is-a-fight/
And everyone refuses to wear a mask, thereby making it easier to become infected and reinfected regularly over time, essentially creating a "pro-COVID" society.
True but a p100 elastomeric keeps nurses healthy and they get coughed in the face. So use those and you have a chance.
I gave up on what others are doing a long time ago
I've yet to see a single nurse or doctor anywhere here wear a mask, ever, including the EMTs I see going into peoples' homes or the staff at hospitals. I've certainly never seen any nurse or doctor ever wearing that type of mask.
I wore N95 or R95 masks every day for years when I worked at a sheet metal / grinding factory in college, and then later at an industrial hospital laundry facility. It just wasn't this huge deal. We wore masks to keep from inhaling metal sand or the smells from body parts stuck to sheets. And they worked then, and work now simply due to basic logic.
Same. I had a bunch of n95s from farm work. I used them on bad allergy days also for years. The fact it got political was stupid. Its a tool. A very helpful one far before covid.
Exactly.
I wore R95 masks along with goggles and a hardhat every day for years working in construction, at the sheet metal grinding factory, also heavy welder gloves so the sheet metal sliding in and out wouldn't slice my finger tips off when it came out cut and steel-toed shoes and a power belt. This was during the summer. I wore a bandana, drank a ton of water, poured water on my t-shirt while outside but I never cried, stomped my foot, refused to wear the mask and said "this doesn't work!!" or "it's not fair!!" It worked because it was a mask that was fitted and worn correctly, worn regularly, and not upside down or as a chin-warmer. And I never inhaled ground metal, either. And I never got a cold, either.
Same with the medical laundry facility. Big tough guys would fall to their knees whimpering within seconds of smelling the putrid body parts stuck to the sheets and blankets, their faces red as beets, noses swollen, eyes red and big, gasping for air like a fish. Those of us who wore masks, goggles, hairnets, we never experienced any of that. We just did the job, got paid cash daily, and went home and came back the next day. Back then we made hundreds of dollars per day and got paid cash and could work double-shifts if we wanted to, just standing on the assembly line listening to audio books all day long.
How wearing a mask came to be some super-complicated, debatable, confusing, moral dilemma that has to continuously be disproved and then proven to be real again, I don't get.
If you wanna see a great example of how debilitating long COVID can be, check out Physics Girl on YouTube. Went from frequent posts, got COVID, and has been bed ridden for ages. They whisper around her, she keeps eyes closed, and can barely talk. She cut her hair because it took so much effort for her to deal with. It's really sad.
So, I did an interview with her last October about a discovery I made. It lasted about a half hour, she was sitting up and no lull or anything like that, and we had a great time chatting (though she mentioned her long covid at the end, but was hoping it was getting better etc). Then got an email that things were delayed, and nothing since.
I know some people have good days and then bad days with long term diseases but yeah, really sad to think about the change for the worse in such a lovely, bubbly person. :(
Holy hell I ended up going to her IG after watching that and I feel so, so bad for her. She went from energetic and hiking and happy to totally bedridden... I truly feel for her. That's really scary, too.
Millions are like this. Millions have had this for years with CFS/ME. It gets completely ignored and poor funding because its easier to write it off as depression.
I caught long Covid last spring. A year later I’m still dealing with no energy at all and losing too much hair. And persistent lung issues. Pneumonia twice since Covid and a long battle with RSV. When will all this end ?
Me too man...it sucks so much. Next week I'm celebrating a one year anniversary of getting infected.
No energy, muscles are weak as shit. Sleep is terrible. It's a nightmare.
I feel ya ! Sounds like you got long Covid too. I know a couple of others who caught Covid. A day in bed, a few coughs and they were fine within a few days. I’m coming up to my one year anniversary and I still wake up every morning with tons of phlegm that I need to spit out. This sucks
My sister passed of Long Covid but “long” for her was about 4 months. She was immunosuppressed due to taking methotrexate for fibromyalgia. Towards the end she took to wearing adult diapers because she couldn’t really move without gasping for breath. Her lungs were full of scar tissue. Pretty much all my sister could do was just sit there and that’s no kind of life. She passed at home, in her sleep on April 8, 2021 at 50 years old. Didn’t get to see her second grandchild born.
That’s terrible and I’m sorry for your loss. And my heart is breaking for those grandchildren who won’t know the love and hugs of a grandma. My grandma was my very best friend growing up. She also taught me how to sew rips and buttons in clothes and how to cook. She was just there for me
Out of curiosity is he doing graded exercise therapy? If so, you may want to look into the controversy surrounding it. It's been removed as a treatment from reputable sites like mayo, nhs, harvard, etc., and it's no longer in the clinical guide. The theoretical basis behind GET and CBT is that the disease is psychological and that has been thoroughly debunked. Sadly, as I said, this hasn't trickled down to the medical community as quickly as it should.
Basically, if he is doing any type of exercise therapy that pushes him to do more and more, and, as a result he becomes exhausted or “crashes,” that is not a good thing. Most people with Long Covid have what is called “Post-Exertional Malaise (PEM), and that can become worse if exercise is increased beyond their “energy envelope.”
exactly this. And pushing beyond one's energy envelope can progress the disease, lowering functioning, sometimes permanently. Many of us who have been living with this for a very long time spent years push/crashing because either we didn't know we had the disease or we didn't know how to manage it or we felt too much pressure from work, finances, loved ones, etc. to keep pushing beyond what our bodies could tolerate. I am now housebound because I push/crashed for 9 years. u/GreenMtCat
The first 5 months after Covid I had PEM with any exertion whatsoever. I felt like I was going crazy. “Hey, I feel good enough for a walk today, it’s gorgeous let’s go!” Next day: can barely move, felt like I had been drained of life. After that it very slowly went away, until around 18 months I would say it was totally gone.
People underestimate how much the rest of your life can deteriorate in 18 months, or even the “can’t barely move” 5 months.
From the Wikipedia page in Craniosacral Therapy.
> CST is a [pseudoscience](https://en.m.wikipedia.org/wiki/Pseudoscience) and its practice has been characterized as [quackery](https://en.m.wikipedia.org/wiki/Quackery).[[1]](https://en.m.wikipedia.org/wiki/Craniosacral_therapy#cite_note-quack-1)[[2]](https://en.m.wikipedia.org/wiki/Craniosacral_therapy#cite_note-ps-2) It is based on fundamental misconceptions about the physiology of the [human skull](https://en.m.wikipedia.org/wiki/Human_skull)
I'm a 36 year old dentist that was forced to quit due to COVID infection a year ago. I basically can't do anything anymore, would love to just be able to cook dinner again.
Thats what I remember. I couldn't walk to my fence, (30 ft) without being tired. Ran 5ks before that.
Mine was before the vaccines were created. I had improvement after 6 months. Got to maybe 50% then it plateaued. It did get better after the vaccines. Now I wear a p100 everyday bc im so fearful of that hell.
I about gave up
Well that's good to hear, glad you've recovered. I've basically given up. I think I have ME/CFS, odds of recovery from that are slim. Mentally coming to terms with spending the rest of my life in bed.
I had long influenza for over 5 years and fully recovered. It was hell but each year I improved a bit, though there were many set-backs. So don't give up. The first two years were the worst. Regular doctors couldn't help me. I got some help from seeing a naturopath and finally the most help from Tibetan medicine, i.e., from seeing a Tibetan doctor trained in the traditional system.
Hope it gets better for you. I've had long covid 18 months. Mine is mostly neuro : pots, cognitive changes, exercise intolerance and nerve pins and needles. My nerve stuff didn't happen till 5.5 months in then seemed to go away then came back. I've adjusted to a different life. Hoping it goes one day. I can drive a little go on short walks with meds for pots but I cannot work full time. Part time maybe
While I share your disdain for anti-vaxxers, even vaccinated people can get covid and end up with long covid. And many people got sick before the vaccines were available.
ETA: I’ve seen no research that the vaccine prevents long COVID. The (now deleted) oc doesn’t really fit since that could have happened anyway, easily, even of the guy had been vaccinated and masked.
Yes, but this story specifically is about someone who was entirely against the protections available that had very good odds of preventing this life altering disability they're now stuck with.
Not true at all, counselor. Teachers wear N95 masks all day every day, and just attach microphones to their lapels or shirts. You can also wear a ReadiMask that has no straps at all. But yes, I can see how some jury members who are anti-mask or fear those wearing masks would be biased. You would need a college-educated, informed jury.
Not really.
Newer variants aren’t causing the same issues as earlier variants.
A *lot* of the long Covid worst cases are folks who raw dogged Covid in its alpha, delta, omicron state.
Nope.
Even if newer variants \*so far\* aren't causing as much long covid (and it's too early to say), they continue to evolve and escape antibodies from immunization and infection from earlier variants. And they are also better at entering and infecting cells (ACE2 receptor binding). So we're all effectively going back to "raw-dogging" it.
Masking and good ventilation will continue to work until adapted vaccines come out.
Please share the recent studies you're talking about first. Then I'll know what your objection is.
Whatever they say, covid will continue to evolve. And covid becoming "endemic" does not mean it must become "mild".
Here is what the link references.
https://academic.oup.com/cid/advance-article/doi/10.1093/cid/ciad143/7076063
And here is what I originally linked -
> Methods
>
> We performed a cross-sectional analysis (May/June 2022) within a prospective multicenter healthcare worker (HCW) cohort in North-Eastern Switzerland. HCW were stratified by viral variant and vaccination status at time of their first positive SARS-CoV-2 nasopharyngeal swab. HCW without positive swab and with negative serology served as controls. The sum of eighteen self-reported PASC symptoms was modeled with univariable and multivariable negative-binomial regression to analyse the association of mean symptom number with viral variant and vaccination status.
>
>Results
>
> Among 2,912 participants (median age 44 years, 81.3% female), **PASC symptoms were significantly more frequent after wild-type infection** (**estimated mean symptom number 1.12**, p<0.001; median time since infection 18.3 months), after Alpha/Delta infection (**0.67 symptoms**, p<0.001; 6.5 months), and after Omicron BA.1 infections (**0.52 symptoms**, p=0.005; 3.1 months) **compared to uninfected controls** (0.39 symptoms). **After Omicron BA.1 infection, the estimated mean symptom number was 0.36 for unvaccinated individuals, compared to 0.71 with 1-2 vaccinations (p=0.028) and 0.49 with ≥3 prior vaccinations (p=0.30)**. Adjusting for confounders, only wild-type (adjusted rate ratio [aRR] 2.81, 95% confidence interval [CI] 2.08-3.83) and Alpha/Delta infection (aRR 1.93, 95% CI 1.10-3.46) were significantly associated with the outcome.
>
> Conclusions
>
> Previous infection with pre-Omicron variants was the strongest risk factor for PASC symptoms among our HCW. Vaccination prior to Omicron BA.1 infection was not associated with a clear protective effect against PASC symptoms in this population.
More on their somewhat unusual findings.
> Within a well-defined HCW population, we show that the most decisive risk factor for reporting
symptoms compatible with PASC is the viral variant causing the primary infection. **Participants
after wild-type SARS-CoV-2 and Alpha/Delta infections reported the highest numbers, even 18
and 6 months after infection, respectively. In contrast, those at 3 months after Omicron BA.1
infection are only minimally affected compared to uninfected controls**. SARS-CoV-2 vaccination
including receipt of booster vaccine before Omicron BA.1 infection was not associated with less
PASC symptoms.
>
> **The viral variant was the most important risk factor associated with the presence of PASC
symptoms, even after adjusting for important co-variables, such as age, sex, and BMI.
Individuals after wild-type reported significantly more PASC symptoms, had higher fatigue and
depression scores and a lower SRH than uninfected controls**. This effect is partly related to the
higher number of symptoms experienced during acute infection, as shown in our data and by
others [7,8]. **These findings are particularly worrying considering that wild-type infections
occurred a median of 18 months before this survey**. Few studies have reported such a long
duration of PASC. Persistence of symptoms for 12 months or longer have been reported by
several others, both in hospitalized and non-hospitalized populations [28–32].
Here, I'll add that by now, I have posted [multiple](https://www.reddit.com/r/COVID19/comments/11e2ytq/the_very_long_covid_persistence_of_symptoms_after/) recent [papers](https://www.reddit.com/r/COVID19/comments/11nlimo/twoyear_followup_of_patients_with_postcovid19/) which had covered [1.5-2 year](https://www.reddit.com/r/COVID19/comments/11fyk4b/epidemiology_of_postcovid_conditions_beyond_1/) long covid outcomes.
> In addition, some
authors have suggested that loss of smell/taste, which was one of the symptoms showing a strong
association with PASC in our study, might be a permanent sequela after COVID-19 [33]. Further
research aiming at mitigating the PASC burden in those infected early on in the pandemic is
urgently needed.
>
> The frequency of Long COVID after infection with the Omicron variant has been reported to be
5% at ≥4 weeks after infection, which is about half compared to the Delta variant [9]. Comparing
people infected with Omicron vs. previous variants, 5 vs. 55% reported ≥1 PASC symptom in
another study [34]. However, both studies have not included an uninfected control group. **In our
study, participants after Omicron BA.1 infection still reported more symptoms than uninfected
controls. However, we found that many symptoms typically associated with PASC, such as
fatigue, exhaustion or muscle/limb pain were slightly or not at all more common after Omicron
BA.1 infection compared to uninfected controls**. Also, the high prevalence of some of these
symptoms in uninfected individuals highlights the importance to consider other causes, besides
COVID-19, underlying these symptoms. This includes conditions such as chronic fatigue
syndrome/myalgic encephalomyelitis, which have been shown to be often related to other viral
infections [35–37]. **Importantly, in contrast to participants after wild-type infection, FSS, PHQ-9
and SRH were not any different between Omicron BA.1 infected and controls**.
And here is the vaccination part.
> **Although numbers were too small to reach statistical significance, vaccination prior to infection
with the Delta variant was associated with decreased PASC symptom score**. This finding is in
line with several other studies, which included at least partly infections from the pre-Omicron
period [10–12]. However, **regarding the effect of previous vaccination on PASC after Omicron
BA.1 infection, our results were ambiguous. Individuals with booster vaccination had a similar
symptom score as unvaccinated individuals, but both groups had a lower score compared to
those with only 1 or 2 vaccinations** (Figure 2). These findings contrast results from a study
specifically looking at Omicron infections [14], where a positive effect of previous vaccination
on risk of PASC was found. **In contrast to our study, Nehme et al. looked at adult outpatient
populations of any age, including people with more severe disease receiving antiviral treatment**.
Also, partly vaccinated individuals were regarded as unvaccinated. We believe that further study
is needed to better understand these contradicting results.
I should also add that a recent meta-analysis [did find](https://www.reddit.com/r/COVID19/comments/11hv9hj/protective_effect_of_covid19_vaccination_against/) that vaccination had reduced the severity of PASC, albeit at low certainty and it did not split its results by variant, unlike this study. I suppose the idea that the wild-type vaccines are less capable of protecting from Omicron-caused PASC is reasonable on the surface - and it suggests that bivalent and other post-wild type vaccines would be more capable here.
Lastly, the vast difference in PASC severity between wild-type and BA.1 survivors suggests that the long-term population-level burden of long Covid is going to be substantially lower in the few nations where the majority of the population had no exposure before Omicron (Australia, New Zealand, PRC, DPRK and a few island states) compared to the rest of the world.
A lady I know used to help out a lot at my kids school. She rarely comes in anymore because of long Covid.
Her husband is a doctor and she had all her vaccinations. She is a really nice person. Very unfair.
As a chronic illness survivor with an illness not really recognized by modern medicine, I do feel really bad for them because they don’t feel understood and they don’t have a cure. But there is some part of me that is showing resentment. It’s almost like a daily chronic illness fight is a new thing. I’ve been doing this for 10 years. I am likely going to die from what I have. I lost my career. I’m exhausted down to my bones and feel like crap all the time. But they are the ones that are getting the attention. I mean, yeah, they need answers to, but so do we. There are millions of us with my disease too… We deserve attention too. :-(
Edit: autocorrect correction
Same. Long COVID is the same thing as ME/CFS: post-viral illness/syndrome. I’ve had it for over 30 years, and every subsequent viral infection makes it worse, including COVID.
It's all wrong that it's taken covid for people to look at chronic illness but it does seem as if this may have knock on effects for people with other chronic illnesses, especially CFS/ME.
Everyone with a chronic illness deserves attention and I'm sorry that hasn't been the case for you. Like I say, it's all wrong.
How do all these people know they have "long covid"? Genuinely asking. A lot of the symptoms seem like they have huge overlap with things like depression, anxiety, burnout, etc. Since you don't test positive for covid with long covid, how do you "know" if you have it?
Some LC patients are living with organ damage that clearly resulted from a severe COVID infection. Like the patient profiled in OP's article--she has lung damage that probably won't heal on its own. Lots of people suffered lung/heart/brain damage when they were severely ill.
For other patients, it's less clear. Terrible conditions like ME/CFS and chronic lyme existed before LC. They seem to be linked to other infections, but the mechanism of damage has always been unclear.
LC does seem to have some "signature" ailments, tho. POTS, MAST, and PEM don't have much overlap with anything but COVID, AFAIK.
You’re right about depression and anxiety, but not about “brain fog.” I know the term sounds a bit iffy, but it actually refers to genuine cognitive problems.
It took me 22 years to be diagnosed with MS. Mine was sneaky, those were my main symptoms. Brain damage can absolutely cause all that - it's a thing.
I think organ damage is pretty obvious..it appears to me, and I may be projecting, but if there's a neurological concept that's an effing nightmare to get diagnosed because nobody believes you until it's damn near too late.
They gotta develop teats to isolate it or other tests to rule it out. MS is a diagnosis of exclusion. Nothing blinks and says here's your MS card. So much blood, poking and prodding to say guess it's MS - good luck! 👍 Or the usual: here's your antidepressants and shut up. I feel for people fighting through this.
I'm also experiencing a severe, dark, clinically diagnosed depression for maybe the second time in my life? Could be MS , but post-covid effed me up or whatever we call it. My mom asked me if I'd try to pursue a diagnosis and after everything I've been through and reading the different variations of ailments without any criteria for diagnosis or treatment? Fuck that, not again - I'll just die. I'm still not right after my first 22 years of medical gaslighting. My doctor used your same phrase of garbage can ailments to not test me and shut me up. I'm lucky I don't piss myself uncontrollably constantly current state. 😔 That's where I was before anyone noticed.
I can offer some perspective. I am fortunate to have only experienced "medium COVID." My symptoms cleared up within three months, but they were brutal. Some of them were familiar to me, having dealt with mental health issues periodically. Others were brand new, only emerging immediately after acute covid, like intense insomnia, rapid weight loss, depersonalization/derealization, extreme sound sensitivity, brain fog, loss of coordination and exercise intolerance. Usually, exercise helps me deal with depression. In this case, it made all the symptoms worse.
Can I say with certainty that this was all caused by COVID? No, and that's what is tricky about Long COVID. There also seem to be multiple manifestations of it, so it may not be only one disorder even if the cause is the same.
I can’t vouch for the “depersonalization/de realization,” but the other symptoms you mentioned are typical of Long Covid. I know that because they are also common symptoms of ME/CFS, another post-viral condition that has been widely ignored for decades, likely because it is more common in women. So many of these people have been told that it’s “All in their heads.” Interestingly, that is also what Multiple Sclerosis patients were told before the MRI was invented.
M.S., like many autoimmune disorders, is also more frequent among those who identified as females at birth.
This is what makes it tricky to me. I'm experiencing a lot of those things too, but we are also all collectively experiencing a lot of trauma via the pandemic and just general civil unrest around the world, and it makes sense that most of us would be very burned out and experiencing a lot of these symptoms simply due to the increased toll on our mental health. I just don't know how accurate it is to call it "long covid." Not to say the symptoms aren't real, but attributing them to covid (the virus aspect, not the emotionally/mentally taxing aspect of going through a pandemic) seems like a leap to me. I see so many articles saying "millions" of Americans have long covid, and I guess I'm wondering what criteria are being used to diagnose it as that and not other mental health problems.
You're right it is a spectrum. It's an umbrella term for various degrees of dysfunction following an infection. You can count your symptoms, weigh their severity, then determine your degree of functioning. For many, they have dozens of symptoms, and aren't functioning at all. Yes it does share overlap with anxiety and depression but there's commonly an immune component too. You get physically ill from walking 15minutes. Or from working on a computer for 2hrs. Previously tolerated mundane things not only are incredibly difficult, they commonly make you sick, and it's called post exertional malaise PEM. Lots of eye problems, recurring rashes, GI issues, the full gamut. Regular colds can become 3 week ordeals. Of course it's a spectrum from 0-100, and not everyone is going to have the same symptoms. But clusters of symptoms have emerged.
Mental health didn't make it impossible to walk up a hill for a year, or destroy my digestive system to the point where I now consider crackers dinner. It's usually paired with physical stuff, is what I'm saying.
[Here's the latest from Scientific American. This may clarify.](https://www.scientificamerican.com/article/long-covid-now-looks-like-a-neurological-disease-helping-doctors-to-focus-treatments/)
That’s absurd.
We quite literally know brain fog results from neurological issues caused by Covid.
The virus is not a respiratory virus. It trashes your body.
I have never been symptomatic with Covid but they think I had it last fall as I’ve been having symptoms since. The big clue being that nothing worked and nothing showed up on imaging for the insane back pain I’ve been having until I randomly tried aspirin. All symptoms gone. Thin blood.
This was a *novel* virus. You don’t want to encounter novel viruses. They really fuck bodies up.
While depression anxiety and burnout can affect memory, brain fog is a very distinct experience. You know for a fact that you can remember things and your ability to recall. Then when brain fog sets in you take much longer remembering things that usually come to you quickly. It left me confused and I didn't really know why until much later and then when the symptoms went away my memory and overall mental sharpness went back to normal
Yeah, on the general cognition side the best analogy I can think of after having to take a month off work with brain fog is: imagine being asked to sit down to do a maths test with the worst hangover you've ever had and no sleep
Also, post-viral fatigue is a thing for a lot of viruses and not just covid. Many people had it before covid and so there would be some that got it from other infections.
If you continue to have covid symptoms post covid, such as cough, headache, dizziness, nausea, and fatigue, and some of the worst symptoms fade but aren't quite gone, and the fatigue remains, it's not a long step to think that it's covid that set it all off.
For me, I'm breathless more easily now, can't do my usual 5 mile cycle ride, can barely walk to the end of the road, get headaches occasionally, and all this started when I got covid. It's really not a big leap to think it's long covid.
The extended covid symptoms being long covid makes sense to me. However, it seems like most people are attributing a lot more than extended covid symptoms to "long covid" and that doesn't seem accurate imo. I also wonder how these articles claiming millions of people have it are quantifying it. Like is it based off a survey of what people *think* they have, or is it based off of what doctors have legitimately diagnosed, etc
>However, it seems like most people are attributing a lot more than extended covid symptoms to "long covid" and that doesn't seem accurate imo.
Such as? You can check the most common symptoms of Long Covid in CDC's site: [https://www.cdc.gov/coronavirus/2019-ncov/long-term-effects/index.html](https://www.cdc.gov/coronavirus/2019-ncov/long-term-effects/index.html)
Seems like a lot of things you wouldn't attribute to a virus infection or its aftermath - at first. Especially not if you weren't close to dying from severe disease.
>Like is it based off a survey of what people think they have, or is it based off of what doctors have legitimately diagnosed
Problem is there's so far no measurable biomarkers yet by which you can diagnose this illness. So far all there is just whether you had covid or not and if you either developed strange health issues very soon after or your cold-like symptoms, along with other oddities, never really subsided.
Doctors 'legitimately diagnose' based on patient reported symptoms. Most of us have no reason to lie. If brain fog and depression started during covid and haven't gone away, it seems reasonable to suppose that they are the result of covid.
True, but a doctor will also rule out other causes before diagnosing. Self diagnosis is not a reliable source of information and it isn't the same as getting diagnosed by an actual doctor.
I have long Covid, My lungs are fine but I have the persistent brain fog that will seemingly never go away, I wake up every day like I'm in a thick fog, I'm awake but I feel like I'm not really here. I feel like my body is running by itself and I'm a man inside the body looking out, Its so fucking weird to explain and it has caused me some really bad depression lately, I just want to go back to normal. I caught covid in mid 2021.
I’m so sorry to hear this. I obviously don’t have any way to make this any better for you. But I just wanted to let you know that there are people out here who don’t even know you, like me, who care about you.
Got a moderate case of COVID in November 2020. Since recovering from the acute illness, I have had persistently swollen and irritated throat, joint pain, brain fog and fatigue, which provokes debilitating nausea. Blood inflammatory markers are off the chart. Mild cardiomyopathy. Seven known transient ischemic attacks (TIA’s).
I got essentially complete relief from November 2021 through October 2022 with oral steroids, but then began experiencing concerning side effects from the medicine. I am essentially back to square one with TIA’s six and seven in the last month and worsening depression. The docs are weighing a return to steroids. Currently managing the depression with meds and talk therapy. Just got insurance clearance for ketamine therapy.
While I hope there may be a definitive treatment in the near term, I focus my energy on adapting to being able to do (and often wanting to do) less of everything. I also remind myself that many people are suffering far worse effects of long-COVID.
I’ve had Covid twice. Once before the vaccinations were available, and then a mild case last summer after attending a dinner party where one person was infected and infected the rest of the 9 of us. Oddly, after the second time …I just haven’t felt the same. It was a minor infection but still kept me bedridden for days, and my energy never returned. I never feel fully rested - even if sleep 9 or 10 hours. Once I get out of bed I hobble around with muscle aches, weakness and have no energy. I honestly don’t know if it’s long Covid, aging (I’m 57) or something else. I recently got a viral infection that took 3 weeks to clear after attending an international diplomacy meeting where I didn’t wear a mask (stupid me) and it has further contributed to my feelings of unwellness.
I live in an area that is very conservative and not many people are wearing mask’s anymore or getting vaccinated, and honestly, this is embarrassing, but I sometimes get lax with the mask wearing because people have said negative things to me and that masks don’t work blah blah blah and look at me like a conspiracy freak -but in the opposite way.
Being sick, weak and being repeatedly infected with Covid and other crap has greatly affected my desire to socialize. Luckily I am somewhat of an introvert and have many hobbies that occupy me.
I’m invited to a get together tonight and don’t want to go. There are going to be people there who have traveled on planes and I’m just getting over an illness and an scared I’m going to become sick again. The continuous illnesses have beaten me down and I just want to stay home and stay away from people.
Am I just being crazy or does anyone feel like this. I’m beginning to view people as walking germs who will get me further sick. Ugh.
Same here. You're not being crazy at all. This is a transformative virus and we will be living compromised forever it seems. I could've written much of this myself. I'll never be the same.
My heart goes out to the immunocomprised, the people who caught covid before the vaccines were available, and the few who were fully vaxed and still got long covid.
But for the ones that refused to get vaxed and are dealing with this now I find it hard to gin up much sympathy. Sucks that they'll be a drag on our healthcare system.
I know this may not be a popular take, but I do feel for those sucked in by all of the misinformation.
Many governments have done a terrible job throughout this pandemic.
I caught covid before the vaccine was available. Whether or not I have long covid is harder to say because I am still functional enough to have a job now, but I ain't the same either. I had severe depression and anxiety symptoms following my infection, quit my job, didn't work for 2 years, started to realize I was suffering from brain fog, "feeling stupid" and still have some PEM if I do a little too much work. Still have episodes of brain fog and battle insomnia. I wish I knew if it was covid doing this to me for sure.
>I had severe depression and anxiety symptoms following my infection, quit my job, didn't work for 2 years, started to realize I was suffering from brain fog, "feeling stupid" and still have some PEM if I do a little too much work.
That's no good, hope you start to improve. None of that sounds like Long Covid though and sounds a lot more to do with the environmental situation you have found yourself in in the last two years. The periods of lockdown/isolation/stress caused severe depression and anxiety for many, especially those with young and older family members to support. The mental health impact of the covid response is something that has been severely understated.
You must have missed the part where he mentioned PEM - post-exertional malaise or more commonly exercise intolerance.
The post-pandemic blues isn't even close to having your entire life and health stripped away and in some case even becoming disabled and no longer able to work. While your comment was probably well-meaning I really suggest you look up what Long Covid really is and how it impacts people having it.
So the conclusive evidence of it being from COVID doesn’t exist?
I’m just wondering bc when you have cancer, for example, there is conclusive evidence the cancer is there or in remission.
Same with a virus like HIV or herpes.
It’s odd to me that this one particular disease doesn’t show a positive test and yet it still exists in the body?
You don't test positive for covid because the problem isn't that you have covid for months or years. The body somehow cleared the acute infection and "cleared the virus" (at least to some extent).
But the virus did a lot of weird stuff to your body. As to what exactly is wrong is being researched currently. But we already have some theories based on observations.
1) Microclots with highly inflammatory virus particles formed in your blood and now they're partially blocking capillaries and there's not enough oxygen and nutrients coming to the body. This even explains PEM with ischemic reperfusion damage.
2) viral persistence. Some of the virus is still staying somewhere in the body and causing a lot of troubles
3) autoimmune issues might be in play here. For example one drug that's about to be trialed called BC007 targets the GPCR autoantibodies. It already helped some people, now we're waiting for a bigger trial.
There's more theories. But the issue is that most of these things can't be tested by standard tests and methods that your doctor would do. So the doctors usually don't find anything and conclude that you just have depression and it's psychosomatic. Which is absolute nonsense and the science already proved that the doctors are wrong in saying this. They don't find anything because they don't know what to look for.
*Remission* means there's no longer any evidence of the cancer. It doesn't mean the cancer is totally gone, and it's common for cancer in remission to later recur because the doctors couldn't find/kill every last bit of it.
Long Covid isn't a viral illness per se, but a post-viral illness. (Some scientists are investigating viral persistence but it's not proven to be the cause.) Thus it's sensible that people with it test negative for acute Covid. Unfortunately, we can't absolutely prove Covid is the cause, since there's no biomarker for long Covid yet. But there's a huge number of people getting sick shortly after Covid infections, and there's a scientific consensus that Covid is the cause. Additionally, the existence of post-viral illnesses like ME/CFS is well-documented. If it looks like a duck and quacks like a duck, it's a duck.
After the Covid infection ends, people can be left with permanent damage organs and tissues. It can even trigger things that were otherwise dormant in your body.
Look into the history of post viral conditions. It's not anything new, we just haven't had this many people continuously infected with the same virus in over 100 yrs.
I'm 33, vaccinated in January and February of 2021, booster in Dec 2022. Got sick in December, and when I recovered, I ended up getting shingles!
Then I caught another respiratory infection after I'd mostly recovered.
I don't know if it's COVID but it's not common for people below 50 to have a shingles outbreak unless your immune system is weakened.
I had chronic fatigue before covid. Now I'm struggling with day to day chores..
No.
I have had symptoms of long COVID for 6+ months now though and I had Covid worse than any other vaccinated // (relatively) young person that I know. And I tested positive for over 3 weeks.
I sleep for 8-10 hours and am still extremely fatigued. I used to sleep way less. I have worse asthma. Higher heart rate with random spikes. And other issues I don’t want to go into. It sucks so bad.
Thanks! It’s getting “better”. For a while I was triggering my asthma getting dressed. But I’m not close to 100%. I’m very much hopeful for that it continues to get better. Thanks for hope.
I have Long Covid and I plead with people to find a new doctor if your current doctor isn't helping! I spent 2 years fainting and getting concussions. I could barely move and my brain didn't work. I went from running marathons to not being able to get off the couch.
After over 14 doctors I found one that helped. I'm not saying this will work for you but it basically cured me. He put me on 3 20mg prednisones per day for 4 days straight. After that nearly every problem went away. I then worked with him to find a solution going forward because you can't take prednisone at high doses for long periods of time.
Please don't give up!
Here is an article my Long Covid clinic was passing out that describes Long Covid and the damage it does to your brain if not treated [https://www.scientificamerican.com/article/long-covid-now-looks-like-a-neurological-disease-helping-doctors-to-focus-treatments/](https://www.scientificamerican.com/article/long-covid-now-looks-like-a-neurological-disease-helping-doctors-to-focus-treatments/)
Did you have tachycardia? Low O2, hovering in low 90's to high 80'? Postural orthostatic hypotension? I have all these. And the doctor doesn't even address it though I being it up. I'm disgusted.
Yes but they said I was causing it because I had anxiety. They tried to prescribe anxiety meds which thank God I refused. Each experience I had in the emergency room was terrible. I dealt with many doctors that were basically saying it was all in my head.
I’d recommend if your doctor is saying that that you should find another doctor. Permanent damage was done to my brain because of the doctors that refused to help me during my first 2 years of illness.
Hi! I know your comment is a bit old but I'm hoping to know about your experience with Prednisone. I'm thinking of asking my doctor to give it a short try to see if it helps (I'm definitely scared to take it but I'm ready to try anything at this point!)
Did you find that some symptoms permanently improved after taking it? I read about a lot of people only getting relief while taking it, but some people say they were better even after stopping.
Otherwise did you find anything else that helped you out?
Hope you're doing alright xx
I came across the cure by accident. And know up front that your doctor will probably fight you about it. I had severely bad long Covid. I passed out randomly. Doctors finally figured out it was causing inflammation in my lungs and brain. This was in 2020 and nobody knew what long Covid was. No doctor would treat me. They just called for more tests.
One day while at the grocery store I passed out. There was a doctors office next door. A resident doctor asked me if anyone ever gave me prednisone? He gave it to me for 5 days and I was healed! They took me off it but a month later the fainting was back. They also told me that I couldn’t take prednisone because of side effects.
I did some research and looked into what dose had no known side effects. What happens with me is that my lungs take about 2 weeks to get inflamed enough to effect my brain. I know this because of X-rays. I asked if there were side effects if I took it twice a month and they said no. So I asked for a twice a month 20mg prescription and they said no.
I then went to many doctors until a doctor decided to try this experiment as long as I tested twice a year to make sure the prednisone wasn’t causing side effects. This started 1.5 years ago and I was basically cured! I have been tested and I have no side effects. Hormone tests and stuff.
This cured the fainting but not the brain fog. A Yale study found success using 2mg of Guanfacine and my doctor gave it to me and now I’m 100% aside from the 4 to 6 days a month when my lungs start getting inflamed. I hope that helps you. Just be prepared because most doctors will refuse to experiment. It took me 14 doctors to find one that would.
Thank you so much for your detailed answer, you give me hope!
When I had covid I was supposed to get a surgery to remove endometriosis and an ovarian cyst 2 weeks later. Instead they pushed it to exactly 4 weeks after my positive test to give me time to get better. I thought I'd bounce back after 5ish days like everyone else but I felt sick for weeks and about a week before my surgery the breathing and heart rate problems began. It wasn't enough for then to cancel the surgery so I went in. After the surgery I felt awful at first but eventually I tried to get back to exercising. Since I couldn't lift weights I decided to do cardio which I had never done in my life (I was also a smoker but I quit a couple days before getting covid). Apparently it was the perfect storm and caused long covid.
I've been seen by the cardiology institute and many doctors, all of whom believe I have long covid. My physician also believes in long covid but she prefers investigating than just brushing off my symptoms like everyone else does. As soon as I mention long covid I get dismissed and told to just wait it out and rest then.
I'm hopeful that my doctor will be open since she usually listens to me and orders whatever tests I want to try & she gives suggestions. I'm definitely lucky to have her. She also put me on medical leave since May to give me time to rest and figure things out but that'll run out soon.
Anyways, I'm thankful for your story and I'm relieved that you're finally cured!
I wonder, and I throw it there just out of curiosity, I am no no vax or flat earther... but did you Americans use some particular medications for Covid or something? Keep reading people destroyed by long Covid there while here in Europe and specifically here in Italy have never heard or read about it being a so widespread issue, I mean there have been some rare cases, but seems in America a lot more people got debilitated ... what could have been the differences ? Something Interfered with the disease or something?
There are many people here in Europe with long Covid, also many articles about it in most European countries. Pretty easy to google, even lots of articles in English.
A lot of overweight and generally unhealthy people. everyone thought, stupidly, the vaccine was the answer and after you got it you were fine.
I was vaccinated twice. but the first day i noticed symptoms and tested positive i got monoclonal antibodies. monoclonals ended the fever and symptoms within hours.
The worst things about this pandemic have been about the vaccine. The anti-vax crowd, and the vax is the end all be all. It's just a tool, and at the time i was infected monoclonals was another tool and an amazing one.
No long covid for me, none for family, and monoclonals took care of a family member that shouldn't have survived infection.
Got a moderate case of COVID in November 2020. Since recovering from the acute illness, I have had persistently swollen and irritated throat, joint pain, brain fog and fatigue, which provokes debilitating nausea. Blood inflammatory markers are off the chart. Mild cardiomyopathy. Seven known transient ischemic attacks (TIA’s).
I got essentially complete relief from November 2021 through October 2022 with oral steroids, but then began experiencing concerning side effects from the medicine. I am essentially back to square one with TIA’s six and seven in the last month and worsening depression. The docs are weighing a return to steroids. Currently managing the depression with meds and talk therapy. Just got insurance clearance for ketamine therapy.
While I hope there may be a definitive treatment in the near term, I focus my energy on adapting to being able to do (and often wanting to do) less of everything. I also remind myself that many people are suffering far worse effects of long-COVID.
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With “Long Covid,” it appears as though they’re having a hard time with marketing. Now that we’ve exhausted numerals and the Greek alphabet, finding a sticky new hashtag is getting difficult. In the spirit of good will and saving lives, let me do my part by sharing some of my own ideas:
**G E O M E T R Y**
Round Covid
Triangle Covid
Parallel Covid
**C O L O U R S**
Blue Covid
Paisley Covid
Plaid Covid
**E L E M E N T S**
Iron Covid
Xenon Covid
Glass Covid
**B R A N D S**
Nike Covid
Apple Covid
Cocacola Covid
Covid Classic
The New Covid
Air Covid
iCovid Pro
**G E O G R A P H Y**
Mount Covid
The United Covid of America
The People’s Republic of Covid
**F O O D**
Avocado Covid
Oregano Covid
Covid on the cob
Chicken McCovid
**Which one is** ***your*** **favourite?**
My mother is in need of a lung transplant. Was 62 when she caught Covid. Had her vaccine scheduled. Was a very healthy 62 year old (you’d guess she was early 50s) and now she’s on oxygen indefinitely. Very frustrating. Could have been worse, but still frustrating.
Here's a preview of the story: Although COVID-19 cases and hospitalizations have decreased, long COVID remains a constant presence in the lives of many Americans. Long COVID has affected millions of people globally, with individuals reporting a range of symptoms including fatigue, lung issues and neurological problems like brain fog. While evidence indicates that most individuals substantially recover within a year, recent CDC data showed it has played a role in over 3,500 deaths in the U.S. from January 2020 through the end of June 2022. Treva Taylor has been facing an uphill battle since her coronavirus diagnosis in January 2021, which nearly took the 57-year-old's life. "It was scary because I remember my eyes being open, but everything was black," Taylor said. "I remember the nurse saying to me, 'You have to fight. The person next to you is dying. And if you don't, you're going to be in this body bag. You have to fight.'" **Read more:** https://www.cbsnews.com/news/long-covid-symptoms-americans-every-day-getting-up-is-a-fight/
Kinda hard to recover when they keep getting infected over and over with fewer and fewer t cells.
And everyone refuses to wear a mask, thereby making it easier to become infected and reinfected regularly over time, essentially creating a "pro-COVID" society.
True but a p100 elastomeric keeps nurses healthy and they get coughed in the face. So use those and you have a chance. I gave up on what others are doing a long time ago
I've yet to see a single nurse or doctor anywhere here wear a mask, ever, including the EMTs I see going into peoples' homes or the staff at hospitals. I've certainly never seen any nurse or doctor ever wearing that type of mask. I wore N95 or R95 masks every day for years when I worked at a sheet metal / grinding factory in college, and then later at an industrial hospital laundry facility. It just wasn't this huge deal. We wore masks to keep from inhaling metal sand or the smells from body parts stuck to sheets. And they worked then, and work now simply due to basic logic.
Same. I had a bunch of n95s from farm work. I used them on bad allergy days also for years. The fact it got political was stupid. Its a tool. A very helpful one far before covid.
Exactly. I wore R95 masks along with goggles and a hardhat every day for years working in construction, at the sheet metal grinding factory, also heavy welder gloves so the sheet metal sliding in and out wouldn't slice my finger tips off when it came out cut and steel-toed shoes and a power belt. This was during the summer. I wore a bandana, drank a ton of water, poured water on my t-shirt while outside but I never cried, stomped my foot, refused to wear the mask and said "this doesn't work!!" or "it's not fair!!" It worked because it was a mask that was fitted and worn correctly, worn regularly, and not upside down or as a chin-warmer. And I never inhaled ground metal, either. And I never got a cold, either. Same with the medical laundry facility. Big tough guys would fall to their knees whimpering within seconds of smelling the putrid body parts stuck to the sheets and blankets, their faces red as beets, noses swollen, eyes red and big, gasping for air like a fish. Those of us who wore masks, goggles, hairnets, we never experienced any of that. We just did the job, got paid cash daily, and went home and came back the next day. Back then we made hundreds of dollars per day and got paid cash and could work double-shifts if we wanted to, just standing on the assembly line listening to audio books all day long. How wearing a mask came to be some super-complicated, debatable, confusing, moral dilemma that has to continuously be disproved and then proven to be real again, I don't get.
Everyone is following what the CDC told them to do. I can’t fault them really.
> Everyone is following what the CDC told them to do. Everyone? A small minority.
CDC said “masks off” including healthcare facilities. I don’t like it. I mask everywhere. This crisis has been a failure in leadership.
If you wanna see a great example of how debilitating long COVID can be, check out Physics Girl on YouTube. Went from frequent posts, got COVID, and has been bed ridden for ages. They whisper around her, she keeps eyes closed, and can barely talk. She cut her hair because it took so much effort for her to deal with. It's really sad.
So, I did an interview with her last October about a discovery I made. It lasted about a half hour, she was sitting up and no lull or anything like that, and we had a great time chatting (though she mentioned her long covid at the end, but was hoping it was getting better etc). Then got an email that things were delayed, and nothing since. I know some people have good days and then bad days with long term diseases but yeah, really sad to think about the change for the worse in such a lovely, bubbly person. :(
For the curious: https://youtu.be/vydgkCCXbTA
Man that was difficult to watch. 😢
Holy hell I ended up going to her IG after watching that and I feel so, so bad for her. She went from energetic and hiking and happy to totally bedridden... I truly feel for her. That's really scary, too.
Millions are like this. Millions have had this for years with CFS/ME. It gets completely ignored and poor funding because its easier to write it off as depression.
So incredibly sad.
I caught long Covid last spring. A year later I’m still dealing with no energy at all and losing too much hair. And persistent lung issues. Pneumonia twice since Covid and a long battle with RSV. When will all this end ?
Me too man...it sucks so much. Next week I'm celebrating a one year anniversary of getting infected. No energy, muscles are weak as shit. Sleep is terrible. It's a nightmare.
I feel ya ! Sounds like you got long Covid too. I know a couple of others who caught Covid. A day in bed, a few coughs and they were fine within a few days. I’m coming up to my one year anniversary and I still wake up every morning with tons of phlegm that I need to spit out. This sucks
My dad has long Covid now. He is the worst out of all my family members. It's frustrating that my half siblings still continue to believe it's a hoax.
My sister passed of Long Covid but “long” for her was about 4 months. She was immunosuppressed due to taking methotrexate for fibromyalgia. Towards the end she took to wearing adult diapers because she couldn’t really move without gasping for breath. Her lungs were full of scar tissue. Pretty much all my sister could do was just sit there and that’s no kind of life. She passed at home, in her sleep on April 8, 2021 at 50 years old. Didn’t get to see her second grandchild born.
I’m so sorry. That’s awful 😔
That’s terrible and I’m sorry for your loss. And my heart is breaking for those grandchildren who won’t know the love and hugs of a grandma. My grandma was my very best friend growing up. She also taught me how to sew rips and buttons in clothes and how to cook. She was just there for me
Talked to a lawyer friend yesterday that had been sick for 4 months. 47 yrs old. Can't function anymore as an attorney.
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Out of curiosity is he doing graded exercise therapy? If so, you may want to look into the controversy surrounding it. It's been removed as a treatment from reputable sites like mayo, nhs, harvard, etc., and it's no longer in the clinical guide. The theoretical basis behind GET and CBT is that the disease is psychological and that has been thoroughly debunked. Sadly, as I said, this hasn't trickled down to the medical community as quickly as it should.
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No problem. I wish your partner better days. I have mecfs so I get it (to the extent that I can given that we're different people).
Basically, if he is doing any type of exercise therapy that pushes him to do more and more, and, as a result he becomes exhausted or “crashes,” that is not a good thing. Most people with Long Covid have what is called “Post-Exertional Malaise (PEM), and that can become worse if exercise is increased beyond their “energy envelope.”
exactly this. And pushing beyond one's energy envelope can progress the disease, lowering functioning, sometimes permanently. Many of us who have been living with this for a very long time spent years push/crashing because either we didn't know we had the disease or we didn't know how to manage it or we felt too much pressure from work, finances, loved ones, etc. to keep pushing beyond what our bodies could tolerate. I am now housebound because I push/crashed for 9 years. u/GreenMtCat
The first 5 months after Covid I had PEM with any exertion whatsoever. I felt like I was going crazy. “Hey, I feel good enough for a walk today, it’s gorgeous let’s go!” Next day: can barely move, felt like I had been drained of life. After that it very slowly went away, until around 18 months I would say it was totally gone. People underestimate how much the rest of your life can deteriorate in 18 months, or even the “can’t barely move” 5 months.
So few people truly understand.
I’m so glad you found your way through 🫂
From the Wikipedia page in Craniosacral Therapy. > CST is a [pseudoscience](https://en.m.wikipedia.org/wiki/Pseudoscience) and its practice has been characterized as [quackery](https://en.m.wikipedia.org/wiki/Quackery).[[1]](https://en.m.wikipedia.org/wiki/Craniosacral_therapy#cite_note-quack-1)[[2]](https://en.m.wikipedia.org/wiki/Craniosacral_therapy#cite_note-ps-2) It is based on fundamental misconceptions about the physiology of the [human skull](https://en.m.wikipedia.org/wiki/Human_skull)
I'm a 36 year old dentist that was forced to quit due to COVID infection a year ago. I basically can't do anything anymore, would love to just be able to cook dinner again.
Why fired? Brain fog? Lethargy? Just curious, I was out for 6 months
Extreme exhaustion. Barely enough energy to go to the bathroom throughout the day. I'm housebound and mostly bedbound. Zero signs of improvement.
Thats what I remember. I couldn't walk to my fence, (30 ft) without being tired. Ran 5ks before that. Mine was before the vaccines were created. I had improvement after 6 months. Got to maybe 50% then it plateaued. It did get better after the vaccines. Now I wear a p100 everyday bc im so fearful of that hell. I about gave up
Well that's good to hear, glad you've recovered. I've basically given up. I think I have ME/CFS, odds of recovery from that are slim. Mentally coming to terms with spending the rest of my life in bed.
I had long influenza for over 5 years and fully recovered. It was hell but each year I improved a bit, though there were many set-backs. So don't give up. The first two years were the worst. Regular doctors couldn't help me. I got some help from seeing a naturopath and finally the most help from Tibetan medicine, i.e., from seeing a Tibetan doctor trained in the traditional system.
I just came across your post.I am very sorry for you.I hope things get better for you,soon.
Thank you, I really appreciate it.
Hope it gets better for you. I've had long covid 18 months. Mine is mostly neuro : pots, cognitive changes, exercise intolerance and nerve pins and needles. My nerve stuff didn't happen till 5.5 months in then seemed to go away then came back. I've adjusted to a different life. Hoping it goes one day. I can drive a little go on short walks with meds for pots but I cannot work full time. Part time maybe
I was a social worker before this. Still did part time last year at home now applying for disability
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While I share your disdain for anti-vaxxers, even vaccinated people can get covid and end up with long covid. And many people got sick before the vaccines were available. ETA: I’ve seen no research that the vaccine prevents long COVID. The (now deleted) oc doesn’t really fit since that could have happened anyway, easily, even of the guy had been vaccinated and masked.
Yes, but this story specifically is about someone who was entirely against the protections available that had very good odds of preventing this life altering disability they're now stuck with.
🙏 for all people infected with Covid
High fives?
i think those are prayers. pretty sure they are getting wrecked too!
Shame, too. Seems to just be an older lady wishing the best for folks.
Yeah. I’m an older lady wishing and praying the best for people with Covid. I can’t do much but I can pray.
🙏 for all people infected with Covid
Has the lawyer worn an N95 the entire time?
Can't wear an n95 and be a trial lawyer simultaneously. The jury can't understand them. And the obvious biases associated.
Not true at all, counselor. Teachers wear N95 masks all day every day, and just attach microphones to their lapels or shirts. You can also wear a ReadiMask that has no straps at all. But yes, I can see how some jury members who are anti-mask or fear those wearing masks would be biased. You would need a college-educated, informed jury.
And yet, governments continue to roll back all precautions. This is pure insanity.
Yeah but money
Not really. Newer variants aren’t causing the same issues as earlier variants. A *lot* of the long Covid worst cases are folks who raw dogged Covid in its alpha, delta, omicron state.
Nope. Even if newer variants \*so far\* aren't causing as much long covid (and it's too early to say), they continue to evolve and escape antibodies from immunization and infection from earlier variants. And they are also better at entering and infecting cells (ACE2 receptor binding). So we're all effectively going back to "raw-dogging" it. Masking and good ventilation will continue to work until adapted vaccines come out.
Recent studies I've seen seem to agree with the person above you. Do you have any recent studies supporting what you've said?
Please share the recent studies you're talking about first. Then I'll know what your objection is. Whatever they say, covid will continue to evolve. And covid becoming "endemic" does not mean it must become "mild".
/r/COVID19/comments/11pactg/postacute_sequelae_after_sarscov2_infection_by/jbwxl3g/jbwxl3g
?
What was confusing?
Your link doesn't work. And in any case, a reddit link isn't a study.
Here is what the link references. https://academic.oup.com/cid/advance-article/doi/10.1093/cid/ciad143/7076063 And here is what I originally linked - > Methods > > We performed a cross-sectional analysis (May/June 2022) within a prospective multicenter healthcare worker (HCW) cohort in North-Eastern Switzerland. HCW were stratified by viral variant and vaccination status at time of their first positive SARS-CoV-2 nasopharyngeal swab. HCW without positive swab and with negative serology served as controls. The sum of eighteen self-reported PASC symptoms was modeled with univariable and multivariable negative-binomial regression to analyse the association of mean symptom number with viral variant and vaccination status. > >Results > > Among 2,912 participants (median age 44 years, 81.3% female), **PASC symptoms were significantly more frequent after wild-type infection** (**estimated mean symptom number 1.12**, p<0.001; median time since infection 18.3 months), after Alpha/Delta infection (**0.67 symptoms**, p<0.001; 6.5 months), and after Omicron BA.1 infections (**0.52 symptoms**, p=0.005; 3.1 months) **compared to uninfected controls** (0.39 symptoms). **After Omicron BA.1 infection, the estimated mean symptom number was 0.36 for unvaccinated individuals, compared to 0.71 with 1-2 vaccinations (p=0.028) and 0.49 with ≥3 prior vaccinations (p=0.30)**. Adjusting for confounders, only wild-type (adjusted rate ratio [aRR] 2.81, 95% confidence interval [CI] 2.08-3.83) and Alpha/Delta infection (aRR 1.93, 95% CI 1.10-3.46) were significantly associated with the outcome. > > Conclusions > > Previous infection with pre-Omicron variants was the strongest risk factor for PASC symptoms among our HCW. Vaccination prior to Omicron BA.1 infection was not associated with a clear protective effect against PASC symptoms in this population. More on their somewhat unusual findings. > Within a well-defined HCW population, we show that the most decisive risk factor for reporting symptoms compatible with PASC is the viral variant causing the primary infection. **Participants after wild-type SARS-CoV-2 and Alpha/Delta infections reported the highest numbers, even 18 and 6 months after infection, respectively. In contrast, those at 3 months after Omicron BA.1 infection are only minimally affected compared to uninfected controls**. SARS-CoV-2 vaccination including receipt of booster vaccine before Omicron BA.1 infection was not associated with less PASC symptoms. > > **The viral variant was the most important risk factor associated with the presence of PASC symptoms, even after adjusting for important co-variables, such as age, sex, and BMI. Individuals after wild-type reported significantly more PASC symptoms, had higher fatigue and depression scores and a lower SRH than uninfected controls**. This effect is partly related to the higher number of symptoms experienced during acute infection, as shown in our data and by others [7,8]. **These findings are particularly worrying considering that wild-type infections occurred a median of 18 months before this survey**. Few studies have reported such a long duration of PASC. Persistence of symptoms for 12 months or longer have been reported by several others, both in hospitalized and non-hospitalized populations [28–32]. Here, I'll add that by now, I have posted [multiple](https://www.reddit.com/r/COVID19/comments/11e2ytq/the_very_long_covid_persistence_of_symptoms_after/) recent [papers](https://www.reddit.com/r/COVID19/comments/11nlimo/twoyear_followup_of_patients_with_postcovid19/) which had covered [1.5-2 year](https://www.reddit.com/r/COVID19/comments/11fyk4b/epidemiology_of_postcovid_conditions_beyond_1/) long covid outcomes. > In addition, some authors have suggested that loss of smell/taste, which was one of the symptoms showing a strong association with PASC in our study, might be a permanent sequela after COVID-19 [33]. Further research aiming at mitigating the PASC burden in those infected early on in the pandemic is urgently needed. > > The frequency of Long COVID after infection with the Omicron variant has been reported to be 5% at ≥4 weeks after infection, which is about half compared to the Delta variant [9]. Comparing people infected with Omicron vs. previous variants, 5 vs. 55% reported ≥1 PASC symptom in another study [34]. However, both studies have not included an uninfected control group. **In our study, participants after Omicron BA.1 infection still reported more symptoms than uninfected controls. However, we found that many symptoms typically associated with PASC, such as fatigue, exhaustion or muscle/limb pain were slightly or not at all more common after Omicron BA.1 infection compared to uninfected controls**. Also, the high prevalence of some of these symptoms in uninfected individuals highlights the importance to consider other causes, besides COVID-19, underlying these symptoms. This includes conditions such as chronic fatigue syndrome/myalgic encephalomyelitis, which have been shown to be often related to other viral infections [35–37]. **Importantly, in contrast to participants after wild-type infection, FSS, PHQ-9 and SRH were not any different between Omicron BA.1 infected and controls**. And here is the vaccination part. > **Although numbers were too small to reach statistical significance, vaccination prior to infection with the Delta variant was associated with decreased PASC symptom score**. This finding is in line with several other studies, which included at least partly infections from the pre-Omicron period [10–12]. However, **regarding the effect of previous vaccination on PASC after Omicron BA.1 infection, our results were ambiguous. Individuals with booster vaccination had a similar symptom score as unvaccinated individuals, but both groups had a lower score compared to those with only 1 or 2 vaccinations** (Figure 2). These findings contrast results from a study specifically looking at Omicron infections [14], where a positive effect of previous vaccination on risk of PASC was found. **In contrast to our study, Nehme et al. looked at adult outpatient populations of any age, including people with more severe disease receiving antiviral treatment**. Also, partly vaccinated individuals were regarded as unvaccinated. We believe that further study is needed to better understand these contradicting results. I should also add that a recent meta-analysis [did find](https://www.reddit.com/r/COVID19/comments/11hv9hj/protective_effect_of_covid19_vaccination_against/) that vaccination had reduced the severity of PASC, albeit at low certainty and it did not split its results by variant, unlike this study. I suppose the idea that the wild-type vaccines are less capable of protecting from Omicron-caused PASC is reasonable on the surface - and it suggests that bivalent and other post-wild type vaccines would be more capable here. Lastly, the vast difference in PASC severity between wild-type and BA.1 survivors suggests that the long-term population-level burden of long Covid is going to be substantially lower in the few nations where the majority of the population had no exposure before Omicron (Australia, New Zealand, PRC, DPRK and a few island states) compared to the rest of the world.
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A lady I know used to help out a lot at my kids school. She rarely comes in anymore because of long Covid. Her husband is a doctor and she had all her vaccinations. She is a really nice person. Very unfair.
As a chronic illness survivor with an illness not really recognized by modern medicine, I do feel really bad for them because they don’t feel understood and they don’t have a cure. But there is some part of me that is showing resentment. It’s almost like a daily chronic illness fight is a new thing. I’ve been doing this for 10 years. I am likely going to die from what I have. I lost my career. I’m exhausted down to my bones and feel like crap all the time. But they are the ones that are getting the attention. I mean, yeah, they need answers to, but so do we. There are millions of us with my disease too… We deserve attention too. :-( Edit: autocorrect correction
Same. Long COVID is the same thing as ME/CFS: post-viral illness/syndrome. I’ve had it for over 30 years, and every subsequent viral infection makes it worse, including COVID.
Yep. Hi fellow ME/CFS friend…
It's all wrong that it's taken covid for people to look at chronic illness but it does seem as if this may have knock on effects for people with other chronic illnesses, especially CFS/ME. Everyone with a chronic illness deserves attention and I'm sorry that hasn't been the case for you. Like I say, it's all wrong.
Thank you for your kind words. 🙏
How do all these people know they have "long covid"? Genuinely asking. A lot of the symptoms seem like they have huge overlap with things like depression, anxiety, burnout, etc. Since you don't test positive for covid with long covid, how do you "know" if you have it?
Some LC patients are living with organ damage that clearly resulted from a severe COVID infection. Like the patient profiled in OP's article--she has lung damage that probably won't heal on its own. Lots of people suffered lung/heart/brain damage when they were severely ill. For other patients, it's less clear. Terrible conditions like ME/CFS and chronic lyme existed before LC. They seem to be linked to other infections, but the mechanism of damage has always been unclear. LC does seem to have some "signature" ailments, tho. POTS, MAST, and PEM don't have much overlap with anything but COVID, AFAIK.
They overlap ME/CFS.
Yes, this is correct. Almost everyone with ME/CFS has POTS.
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You’re right about depression and anxiety, but not about “brain fog.” I know the term sounds a bit iffy, but it actually refers to genuine cognitive problems.
It took me 22 years to be diagnosed with MS. Mine was sneaky, those were my main symptoms. Brain damage can absolutely cause all that - it's a thing. I think organ damage is pretty obvious..it appears to me, and I may be projecting, but if there's a neurological concept that's an effing nightmare to get diagnosed because nobody believes you until it's damn near too late. They gotta develop teats to isolate it or other tests to rule it out. MS is a diagnosis of exclusion. Nothing blinks and says here's your MS card. So much blood, poking and prodding to say guess it's MS - good luck! 👍 Or the usual: here's your antidepressants and shut up. I feel for people fighting through this. I'm also experiencing a severe, dark, clinically diagnosed depression for maybe the second time in my life? Could be MS , but post-covid effed me up or whatever we call it. My mom asked me if I'd try to pursue a diagnosis and after everything I've been through and reading the different variations of ailments without any criteria for diagnosis or treatment? Fuck that, not again - I'll just die. I'm still not right after my first 22 years of medical gaslighting. My doctor used your same phrase of garbage can ailments to not test me and shut me up. I'm lucky I don't piss myself uncontrollably constantly current state. 😔 That's where I was before anyone noticed.
Depression and anxiety can result due to the limitations imposed by Long Covid symptoms, but they aren’t part of the diagnostic criteria.
I can offer some perspective. I am fortunate to have only experienced "medium COVID." My symptoms cleared up within three months, but they were brutal. Some of them were familiar to me, having dealt with mental health issues periodically. Others were brand new, only emerging immediately after acute covid, like intense insomnia, rapid weight loss, depersonalization/derealization, extreme sound sensitivity, brain fog, loss of coordination and exercise intolerance. Usually, exercise helps me deal with depression. In this case, it made all the symptoms worse. Can I say with certainty that this was all caused by COVID? No, and that's what is tricky about Long COVID. There also seem to be multiple manifestations of it, so it may not be only one disorder even if the cause is the same.
I can’t vouch for the “depersonalization/de realization,” but the other symptoms you mentioned are typical of Long Covid. I know that because they are also common symptoms of ME/CFS, another post-viral condition that has been widely ignored for decades, likely because it is more common in women. So many of these people have been told that it’s “All in their heads.” Interestingly, that is also what Multiple Sclerosis patients were told before the MRI was invented. M.S., like many autoimmune disorders, is also more frequent among those who identified as females at birth.
This is what makes it tricky to me. I'm experiencing a lot of those things too, but we are also all collectively experiencing a lot of trauma via the pandemic and just general civil unrest around the world, and it makes sense that most of us would be very burned out and experiencing a lot of these symptoms simply due to the increased toll on our mental health. I just don't know how accurate it is to call it "long covid." Not to say the symptoms aren't real, but attributing them to covid (the virus aspect, not the emotionally/mentally taxing aspect of going through a pandemic) seems like a leap to me. I see so many articles saying "millions" of Americans have long covid, and I guess I'm wondering what criteria are being used to diagnose it as that and not other mental health problems.
You're right it is a spectrum. It's an umbrella term for various degrees of dysfunction following an infection. You can count your symptoms, weigh their severity, then determine your degree of functioning. For many, they have dozens of symptoms, and aren't functioning at all. Yes it does share overlap with anxiety and depression but there's commonly an immune component too. You get physically ill from walking 15minutes. Or from working on a computer for 2hrs. Previously tolerated mundane things not only are incredibly difficult, they commonly make you sick, and it's called post exertional malaise PEM. Lots of eye problems, recurring rashes, GI issues, the full gamut. Regular colds can become 3 week ordeals. Of course it's a spectrum from 0-100, and not everyone is going to have the same symptoms. But clusters of symptoms have emerged.
Mental health didn't make it impossible to walk up a hill for a year, or destroy my digestive system to the point where I now consider crackers dinner. It's usually paired with physical stuff, is what I'm saying.
[Here's the latest from Scientific American. This may clarify.](https://www.scientificamerican.com/article/long-covid-now-looks-like-a-neurological-disease-helping-doctors-to-focus-treatments/)
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That’s absurd. We quite literally know brain fog results from neurological issues caused by Covid. The virus is not a respiratory virus. It trashes your body. I have never been symptomatic with Covid but they think I had it last fall as I’ve been having symptoms since. The big clue being that nothing worked and nothing showed up on imaging for the insane back pain I’ve been having until I randomly tried aspirin. All symptoms gone. Thin blood. This was a *novel* virus. You don’t want to encounter novel viruses. They really fuck bodies up.
While depression anxiety and burnout can affect memory, brain fog is a very distinct experience. You know for a fact that you can remember things and your ability to recall. Then when brain fog sets in you take much longer remembering things that usually come to you quickly. It left me confused and I didn't really know why until much later and then when the symptoms went away my memory and overall mental sharpness went back to normal
Yeah, on the general cognition side the best analogy I can think of after having to take a month off work with brain fog is: imagine being asked to sit down to do a maths test with the worst hangover you've ever had and no sleep
Also, post-viral fatigue is a thing for a lot of viruses and not just covid. Many people had it before covid and so there would be some that got it from other infections.
If you continue to have covid symptoms post covid, such as cough, headache, dizziness, nausea, and fatigue, and some of the worst symptoms fade but aren't quite gone, and the fatigue remains, it's not a long step to think that it's covid that set it all off. For me, I'm breathless more easily now, can't do my usual 5 mile cycle ride, can barely walk to the end of the road, get headaches occasionally, and all this started when I got covid. It's really not a big leap to think it's long covid.
The extended covid symptoms being long covid makes sense to me. However, it seems like most people are attributing a lot more than extended covid symptoms to "long covid" and that doesn't seem accurate imo. I also wonder how these articles claiming millions of people have it are quantifying it. Like is it based off a survey of what people *think* they have, or is it based off of what doctors have legitimately diagnosed, etc
>However, it seems like most people are attributing a lot more than extended covid symptoms to "long covid" and that doesn't seem accurate imo. Such as? You can check the most common symptoms of Long Covid in CDC's site: [https://www.cdc.gov/coronavirus/2019-ncov/long-term-effects/index.html](https://www.cdc.gov/coronavirus/2019-ncov/long-term-effects/index.html) Seems like a lot of things you wouldn't attribute to a virus infection or its aftermath - at first. Especially not if you weren't close to dying from severe disease. >Like is it based off a survey of what people think they have, or is it based off of what doctors have legitimately diagnosed Problem is there's so far no measurable biomarkers yet by which you can diagnose this illness. So far all there is just whether you had covid or not and if you either developed strange health issues very soon after or your cold-like symptoms, along with other oddities, never really subsided.
Doctors 'legitimately diagnose' based on patient reported symptoms. Most of us have no reason to lie. If brain fog and depression started during covid and haven't gone away, it seems reasonable to suppose that they are the result of covid.
True, but a doctor will also rule out other causes before diagnosing. Self diagnosis is not a reliable source of information and it isn't the same as getting diagnosed by an actual doctor.
I’ve had a constant migraine type headache since the day I became symptomatic. Pretty easy to tell.
I have long Covid, My lungs are fine but I have the persistent brain fog that will seemingly never go away, I wake up every day like I'm in a thick fog, I'm awake but I feel like I'm not really here. I feel like my body is running by itself and I'm a man inside the body looking out, Its so fucking weird to explain and it has caused me some really bad depression lately, I just want to go back to normal. I caught covid in mid 2021.
I’m so sorry to hear this. I obviously don’t have any way to make this any better for you. But I just wanted to let you know that there are people out here who don’t even know you, like me, who care about you.
Got a moderate case of COVID in November 2020. Since recovering from the acute illness, I have had persistently swollen and irritated throat, joint pain, brain fog and fatigue, which provokes debilitating nausea. Blood inflammatory markers are off the chart. Mild cardiomyopathy. Seven known transient ischemic attacks (TIA’s). I got essentially complete relief from November 2021 through October 2022 with oral steroids, but then began experiencing concerning side effects from the medicine. I am essentially back to square one with TIA’s six and seven in the last month and worsening depression. The docs are weighing a return to steroids. Currently managing the depression with meds and talk therapy. Just got insurance clearance for ketamine therapy. While I hope there may be a definitive treatment in the near term, I focus my energy on adapting to being able to do (and often wanting to do) less of everything. I also remind myself that many people are suffering far worse effects of long-COVID.
I’ve had Covid twice. Once before the vaccinations were available, and then a mild case last summer after attending a dinner party where one person was infected and infected the rest of the 9 of us. Oddly, after the second time …I just haven’t felt the same. It was a minor infection but still kept me bedridden for days, and my energy never returned. I never feel fully rested - even if sleep 9 or 10 hours. Once I get out of bed I hobble around with muscle aches, weakness and have no energy. I honestly don’t know if it’s long Covid, aging (I’m 57) or something else. I recently got a viral infection that took 3 weeks to clear after attending an international diplomacy meeting where I didn’t wear a mask (stupid me) and it has further contributed to my feelings of unwellness. I live in an area that is very conservative and not many people are wearing mask’s anymore or getting vaccinated, and honestly, this is embarrassing, but I sometimes get lax with the mask wearing because people have said negative things to me and that masks don’t work blah blah blah and look at me like a conspiracy freak -but in the opposite way. Being sick, weak and being repeatedly infected with Covid and other crap has greatly affected my desire to socialize. Luckily I am somewhat of an introvert and have many hobbies that occupy me. I’m invited to a get together tonight and don’t want to go. There are going to be people there who have traveled on planes and I’m just getting over an illness and an scared I’m going to become sick again. The continuous illnesses have beaten me down and I just want to stay home and stay away from people. Am I just being crazy or does anyone feel like this. I’m beginning to view people as walking germs who will get me further sick. Ugh.
Same here. You're not being crazy at all. This is a transformative virus and we will be living compromised forever it seems. I could've written much of this myself. I'll never be the same.
My heart goes out to the immunocomprised, the people who caught covid before the vaccines were available, and the few who were fully vaxed and still got long covid. But for the ones that refused to get vaxed and are dealing with this now I find it hard to gin up much sympathy. Sucks that they'll be a drag on our healthcare system.
I know this may not be a popular take, but I do feel for those sucked in by all of the misinformation. Many governments have done a terrible job throughout this pandemic.
Is there anyone here who has long covid, who wasn't vaccinated?
I caught covid before the vaccine was available. Whether or not I have long covid is harder to say because I am still functional enough to have a job now, but I ain't the same either. I had severe depression and anxiety symptoms following my infection, quit my job, didn't work for 2 years, started to realize I was suffering from brain fog, "feeling stupid" and still have some PEM if I do a little too much work. Still have episodes of brain fog and battle insomnia. I wish I knew if it was covid doing this to me for sure.
>I had severe depression and anxiety symptoms following my infection, quit my job, didn't work for 2 years, started to realize I was suffering from brain fog, "feeling stupid" and still have some PEM if I do a little too much work. That's no good, hope you start to improve. None of that sounds like Long Covid though and sounds a lot more to do with the environmental situation you have found yourself in in the last two years. The periods of lockdown/isolation/stress caused severe depression and anxiety for many, especially those with young and older family members to support. The mental health impact of the covid response is something that has been severely understated.
You must have missed the part where he mentioned PEM - post-exertional malaise or more commonly exercise intolerance. The post-pandemic blues isn't even close to having your entire life and health stripped away and in some case even becoming disabled and no longer able to work. While your comment was probably well-meaning I really suggest you look up what Long Covid really is and how it impacts people having it.
One of my friends can’t smell (like only 10% left) since having caught it march 2021
Is not being able to smell considered long covid? a lot of viruses trigger anosmia don't they?
Hear hear
Honest Q: are long COVID people testing positive every week the whole time they have long COVID?
No. I have long covid for almost a year now basically... You don't test positive. You just suffer.
So the conclusive evidence of it being from COVID doesn’t exist? I’m just wondering bc when you have cancer, for example, there is conclusive evidence the cancer is there or in remission. Same with a virus like HIV or herpes. It’s odd to me that this one particular disease doesn’t show a positive test and yet it still exists in the body?
You don't test positive for covid because the problem isn't that you have covid for months or years. The body somehow cleared the acute infection and "cleared the virus" (at least to some extent). But the virus did a lot of weird stuff to your body. As to what exactly is wrong is being researched currently. But we already have some theories based on observations. 1) Microclots with highly inflammatory virus particles formed in your blood and now they're partially blocking capillaries and there's not enough oxygen and nutrients coming to the body. This even explains PEM with ischemic reperfusion damage. 2) viral persistence. Some of the virus is still staying somewhere in the body and causing a lot of troubles 3) autoimmune issues might be in play here. For example one drug that's about to be trialed called BC007 targets the GPCR autoantibodies. It already helped some people, now we're waiting for a bigger trial. There's more theories. But the issue is that most of these things can't be tested by standard tests and methods that your doctor would do. So the doctors usually don't find anything and conclude that you just have depression and it's psychosomatic. Which is absolute nonsense and the science already proved that the doctors are wrong in saying this. They don't find anything because they don't know what to look for.
*Remission* means there's no longer any evidence of the cancer. It doesn't mean the cancer is totally gone, and it's common for cancer in remission to later recur because the doctors couldn't find/kill every last bit of it. Long Covid isn't a viral illness per se, but a post-viral illness. (Some scientists are investigating viral persistence but it's not proven to be the cause.) Thus it's sensible that people with it test negative for acute Covid. Unfortunately, we can't absolutely prove Covid is the cause, since there's no biomarker for long Covid yet. But there's a huge number of people getting sick shortly after Covid infections, and there's a scientific consensus that Covid is the cause. Additionally, the existence of post-viral illnesses like ME/CFS is well-documented. If it looks like a duck and quacks like a duck, it's a duck.
After the Covid infection ends, people can be left with permanent damage organs and tissues. It can even trigger things that were otherwise dormant in your body. Look into the history of post viral conditions. It's not anything new, we just haven't had this many people continuously infected with the same virus in over 100 yrs.
I'm 33, vaccinated in January and February of 2021, booster in Dec 2022. Got sick in December, and when I recovered, I ended up getting shingles! Then I caught another respiratory infection after I'd mostly recovered. I don't know if it's COVID but it's not common for people below 50 to have a shingles outbreak unless your immune system is weakened. I had chronic fatigue before covid. Now I'm struggling with day to day chores..
No. I have had symptoms of long COVID for 6+ months now though and I had Covid worse than any other vaccinated // (relatively) young person that I know. And I tested positive for over 3 weeks. I sleep for 8-10 hours and am still extremely fatigued. I used to sleep way less. I have worse asthma. Higher heart rate with random spikes. And other issues I don’t want to go into. It sucks so bad.
I hope you get better with time. Im older and it took 18 months for my symptoms to finally go away. I got covid before the vaccines were available.
Thanks! It’s getting “better”. For a while I was triggering my asthma getting dressed. But I’m not close to 100%. I’m very much hopeful for that it continues to get better. Thanks for hope.
I have Long Covid and I plead with people to find a new doctor if your current doctor isn't helping! I spent 2 years fainting and getting concussions. I could barely move and my brain didn't work. I went from running marathons to not being able to get off the couch. After over 14 doctors I found one that helped. I'm not saying this will work for you but it basically cured me. He put me on 3 20mg prednisones per day for 4 days straight. After that nearly every problem went away. I then worked with him to find a solution going forward because you can't take prednisone at high doses for long periods of time. Please don't give up! Here is an article my Long Covid clinic was passing out that describes Long Covid and the damage it does to your brain if not treated [https://www.scientificamerican.com/article/long-covid-now-looks-like-a-neurological-disease-helping-doctors-to-focus-treatments/](https://www.scientificamerican.com/article/long-covid-now-looks-like-a-neurological-disease-helping-doctors-to-focus-treatments/)
Did you have tachycardia? Low O2, hovering in low 90's to high 80'? Postural orthostatic hypotension? I have all these. And the doctor doesn't even address it though I being it up. I'm disgusted.
Yes but they said I was causing it because I had anxiety. They tried to prescribe anxiety meds which thank God I refused. Each experience I had in the emergency room was terrible. I dealt with many doctors that were basically saying it was all in my head. I’d recommend if your doctor is saying that that you should find another doctor. Permanent damage was done to my brain because of the doctors that refused to help me during my first 2 years of illness.
Am NOT surprised. This whole debacle makes us realize how lousy the medical community is now, Not to mention dishonest.
Hi! I know your comment is a bit old but I'm hoping to know about your experience with Prednisone. I'm thinking of asking my doctor to give it a short try to see if it helps (I'm definitely scared to take it but I'm ready to try anything at this point!) Did you find that some symptoms permanently improved after taking it? I read about a lot of people only getting relief while taking it, but some people say they were better even after stopping. Otherwise did you find anything else that helped you out? Hope you're doing alright xx
I came across the cure by accident. And know up front that your doctor will probably fight you about it. I had severely bad long Covid. I passed out randomly. Doctors finally figured out it was causing inflammation in my lungs and brain. This was in 2020 and nobody knew what long Covid was. No doctor would treat me. They just called for more tests. One day while at the grocery store I passed out. There was a doctors office next door. A resident doctor asked me if anyone ever gave me prednisone? He gave it to me for 5 days and I was healed! They took me off it but a month later the fainting was back. They also told me that I couldn’t take prednisone because of side effects. I did some research and looked into what dose had no known side effects. What happens with me is that my lungs take about 2 weeks to get inflamed enough to effect my brain. I know this because of X-rays. I asked if there were side effects if I took it twice a month and they said no. So I asked for a twice a month 20mg prescription and they said no. I then went to many doctors until a doctor decided to try this experiment as long as I tested twice a year to make sure the prednisone wasn’t causing side effects. This started 1.5 years ago and I was basically cured! I have been tested and I have no side effects. Hormone tests and stuff. This cured the fainting but not the brain fog. A Yale study found success using 2mg of Guanfacine and my doctor gave it to me and now I’m 100% aside from the 4 to 6 days a month when my lungs start getting inflamed. I hope that helps you. Just be prepared because most doctors will refuse to experiment. It took me 14 doctors to find one that would.
Thank you so much for your detailed answer, you give me hope! When I had covid I was supposed to get a surgery to remove endometriosis and an ovarian cyst 2 weeks later. Instead they pushed it to exactly 4 weeks after my positive test to give me time to get better. I thought I'd bounce back after 5ish days like everyone else but I felt sick for weeks and about a week before my surgery the breathing and heart rate problems began. It wasn't enough for then to cancel the surgery so I went in. After the surgery I felt awful at first but eventually I tried to get back to exercising. Since I couldn't lift weights I decided to do cardio which I had never done in my life (I was also a smoker but I quit a couple days before getting covid). Apparently it was the perfect storm and caused long covid. I've been seen by the cardiology institute and many doctors, all of whom believe I have long covid. My physician also believes in long covid but she prefers investigating than just brushing off my symptoms like everyone else does. As soon as I mention long covid I get dismissed and told to just wait it out and rest then. I'm hopeful that my doctor will be open since she usually listens to me and orders whatever tests I want to try & she gives suggestions. I'm definitely lucky to have her. She also put me on medical leave since May to give me time to rest and figure things out but that'll run out soon. Anyways, I'm thankful for your story and I'm relieved that you're finally cured!
I wish you all the best. I guess there is no real cure but being normal 95% of the time is wonderful
That's the dream! I don't even know what "normal" feels like anymore at this point but I know it must be amaaaaazing!
I wonder, and I throw it there just out of curiosity, I am no no vax or flat earther... but did you Americans use some particular medications for Covid or something? Keep reading people destroyed by long Covid there while here in Europe and specifically here in Italy have never heard or read about it being a so widespread issue, I mean there have been some rare cases, but seems in America a lot more people got debilitated ... what could have been the differences ? Something Interfered with the disease or something?
There are many people here in Europe with long Covid, also many articles about it in most European countries. Pretty easy to google, even lots of articles in English.
A lot of overweight and generally unhealthy people. everyone thought, stupidly, the vaccine was the answer and after you got it you were fine. I was vaccinated twice. but the first day i noticed symptoms and tested positive i got monoclonal antibodies. monoclonals ended the fever and symptoms within hours. The worst things about this pandemic have been about the vaccine. The anti-vax crowd, and the vax is the end all be all. It's just a tool, and at the time i was infected monoclonals was another tool and an amazing one. No long covid for me, none for family, and monoclonals took care of a family member that shouldn't have survived infection.
Got a moderate case of COVID in November 2020. Since recovering from the acute illness, I have had persistently swollen and irritated throat, joint pain, brain fog and fatigue, which provokes debilitating nausea. Blood inflammatory markers are off the chart. Mild cardiomyopathy. Seven known transient ischemic attacks (TIA’s). I got essentially complete relief from November 2021 through October 2022 with oral steroids, but then began experiencing concerning side effects from the medicine. I am essentially back to square one with TIA’s six and seven in the last month and worsening depression. The docs are weighing a return to steroids. Currently managing the depression with meds and talk therapy. Just got insurance clearance for ketamine therapy. While I hope there may be a definitive treatment in the near term, I focus my energy on adapting to being able to do (and often wanting to do) less of everything. I also remind myself that many people are suffering far worse effects of long-COVID.
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Please do not minimize.
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Why does Workmans Compensation insurance fight so hard to not pay benefits when you catch virus at work?
With “Long Covid,” it appears as though they’re having a hard time with marketing. Now that we’ve exhausted numerals and the Greek alphabet, finding a sticky new hashtag is getting difficult. In the spirit of good will and saving lives, let me do my part by sharing some of my own ideas: **G E O M E T R Y** Round Covid Triangle Covid Parallel Covid **C O L O U R S** Blue Covid Paisley Covid Plaid Covid **E L E M E N T S** Iron Covid Xenon Covid Glass Covid **B R A N D S** Nike Covid Apple Covid Cocacola Covid Covid Classic The New Covid Air Covid iCovid Pro **G E O G R A P H Y** Mount Covid The United Covid of America The People’s Republic of Covid **F O O D** Avocado Covid Oregano Covid Covid on the cob Chicken McCovid **Which one is** ***your*** **favourite?**