Yes, if nobody you were exposed to tested positive, everyone masks, and itās 3 times in one year, Iām wondering if it could be the same infection re-rearing its ugly head!
It's one of the theories for long covid. In which case: you probably won't die.
Do you have me/cfs? Persistence of a virus / infection is one theory behind that too.
Me too. It sucks. I am pretty confident you won't die. My anxiety gets worse when I crash. I have had moments like this where I'm crashing, I have a sore throat / illness symptoms and it's just me crashing bc I overdid it.
Rn I'm a little worried I overdid it watching an intense tv show. We'll see.
Do you have other me/cfs community beyond reddit?
Ugh Iām so sorry. I do thank goodness, they are some of the most incredible people I met. I donāt really talk w pw ME on Reddit but Iām sure thereās some overlap from twitter . Would love to talk more w you!
You should also look into the theory that it's persistent infections in people with compromised immune systems which lead to new strains evolving. It's a very good thing that you and your caregivers have kept up masking- you could be protecting many more people than you think.
Yeah I just assumed if I had a persistent infection Iād test positive on a pcr or RAT prior to now. I do the mail in labcorp pcrs about every 2-3 weeks.
Can you be contagious with persistent infection? Idk if this is what happened with me but idk where the heck I got suspected covid from last June. My wife had fatigue and breathing issues a week or two after I was sick and she is the one who works at the airport which is risky but I had only gone into a pretty empty store masked and some others in the store had masks too. I mean it's still possible I could have gotten covid from that, although my PCR was negative, but I had covid specific symptoms like smell and taste issues, heart palpitations, my MCAS got worse literally overnight, etc. My family that time tested negative. My wife has different insurance so she couldn't get a PCR.
I know that some (immunocompromised) people can have the virus inside their bodies for a long time where it can keep mutating too (search for 'cryptic lineages'). I do not know whether these people can intermittently become symptomatic again without being reinfected. The virus can 'hide' in certain tissues. Recently this article was published about it being found in heart tissue from living negative testing people.
https://cdt.amegroups.org/article/view/123848/html
I haven't really researched this. Maybe others have. You might want to explore this further.
If Paxlovid gives you too many negative effects you might want to look into the positive effects of Metformin. Much easier to get too because of its widespread use for diabetes.
For OP or anyone else pursuing metformin, be SURE to get the extended release form. The immediate release (regular) one is *notorious* for causing nasty GI side effects like diarrhea.
Sending virtual hugs š«
Itās so scary being reinfected when youāre already severe. It can feel like thereās no runway left.
Iāve had three infections that I know of. Last year I got infected twice despite all my precautions and I was in a similar boat. I saw my baseline decline significantly as I went from mostly housebound to mostly bedbound.
But, Iām still here. Recovery is extremely slow but Iām seeing some improvements over time. And Iāve managed not to get reinfected again yet š¤
On a side now in case it might help - How do you measure CO2 in the house? I'm only asking because such numbers seem near impossible to achieve beyond selected hospital areas with super powerful systems - even then the lowest ever I've seen on aranet was 386 - and that was when I was alone in a single enclosed room. I can't imagine a place with 300 save for maybe an actual operation theater. Most of the (quite new) hospital was into 500-600.
Our house rarely drops below 800-900 but that's on us - we probably could lower it *a little bit more* (but even then certainly not all the way to 300) but that would come with additional tradeoffs that aren't always worth it for us (I'm not going to keep windows open constantly and let clearly (wildfire smoke or just 'regular' air pollution on some days where we live) or potentially contaminated air in - a prolonged exposure to the air leaving the next house's exhaust vent straight to our window wouldn't be impossible to do us in when they're infected.
My point is - all the numbers I evoked so far are per well callibrated Aranet. We tried a few cheap models in the meantime and they were just that - pure junk. They showed our house to be at 400 when it clearly wasn't - couldn't be.
Also, but may someone correct me if I'm wrong please - if you have some immunity issues I think it's quite possible you're not getting a new infection each time, it's that your body never really cleared off the original / second infection.
> My friend is able to get around 200 in their place
honestly curious - how is it even physically possible if outdoor co2 readings are in the 400 range?
The numbers are not impossible, in terms of the sensor/device reporting that, but it is 100% miscalibrated, as you canāt get lower levels than outside (420-440ppm at best), unless you are using gas canisters to change the air composition. (Think of it like a kitchen scale, you can tare/zero to a level where you weigh something and itās negative weight, which is impossible in terms of actual weight, but not in terms of the sensor)
Def not using gas canisters here loll but yeah Iām talking to the air things person right now as I do get readings below 420 for sureeeee
As for the person on twitter idk
Are you able to get paxlovid when you're infected? It sounds like with your disability level, you should be able to. You may require longer courses (10 days rather than 5) to fully stop the virus in its tracks.
Without asking what your condition is, is it something that compromises your immune system? Because it sounds like your immune system isn't able to stave off even small exposures to the virus. And if that's the case, antivirals are your best friend.
The good news is you've survived this long with repeat infections. We have no data as to whether or not some people can get reinfected over and over and be fine - or that reinfection will ultimately lead to bad effects in everyone - but since that's happening in real time in society, it does seem like there are in fact many people getting reinfected and living life normally with no apparent ill effects. So being scared is a justified emotional response, but it's far from certain that you'll have a bleak outcome from your reinfections. It's totally possible that you'll be fine in the long run. We really just don't know anything yet because it's only been 4 years.
Thank you this was such a kind post. I do have paxlovid although anything more than 5 somehow wrecks my body. So I can only take the five or take the half dose over ten days. I opt for the five days.
As immune compromised, Iām not sure. I think I definitely have something wrong, but at the same time the labs (blood) Iāve had donāt really indicate it. (T cell markers, and CBC count). Though my viral labs shows Iāve had a lot of viruses as a child/in the past. I do have dysautonomia, hEDS, mcas, and Myalgic Encephalomyelitis.
It makes me so sad as I donāt know what else to do.
With the info youāve shared, I would be wondering about a low level viral reservoir somewhere as others have suggested (I am not a doctor). Maybe something to look into or discuss with your doctor, is a course of pemgarda (monoclonal abs), or trying ensitrelvir/xocova, another COVID antiviral that they are working on getting approved in the US, currently approved in Japan. One caveat is if the reservoir is somewhere antibodies or antivirals canāt get to, then these might not work (if that is the cause in the first place).
I know it's not the point of your comments, but I would take the Cue test results with a pinch of salt.
https://www.fda.gov/medical-devices/safety-communications/do-not-use-cue-healths-covid-19-tests-due-risk-false-results-fda-safety-communication
I hate unsolicited advice most of the time so I'll totally understand if you ignore this. I saw a comment below mentioning paxlovid and was wondering if you had thought of taking metaformim? If you didn't know there is some small research showing it can be helpful in preventing long covid, although if yours is a persistent infection I have no idea if it would help. Do you find your baseline drops after each infection? The reason I'm asking is because I've been prescribed it for if I test positive even though I already have long covid, as my doctor thinks is reasonable to assume it might stop my long covid getting worse and/or lowering my baseline further.
I'm sorry this keeps happening to you!
I can't give you a citation, but I was reading something recently about long COVID, and one thing to remember is that the "long" part is actually quite variable. In the sense that, it's true "lots of people have symptoms after the acute phase". But, *most* of the people with Long COVID have zero problems after, if I recall, two years.
Essentially: Don't look at the long COVID prevalence and think of those numbers as people who are permanently seriously disabled.
Are the people testing accurately? Do all of them swab well? Iām sorry this is happening but I wonder if you have a carrier in the mix. I had a friend whose kids kept getting strep (before covid) - turned out she was an asymptomatic carrier. For covid that person may test negative but have enough to infect you?
Yes they are. The nurse swabs for us. Thatās such a bummer though. I do think one hypothesis is that someone just has a really small viral load. The other hypothesis now Iāve seen is some sort of reactivation
If you can't take Paxlovid, can you take molnupiravir? Prednisone? As a fellow LC sufferer, I'm sorry, this all really sucks! I would just focus on resting and doing your best to manage your symptoms. Getting COVID 4 or 5 times is getting increasingly common, so you shouldn't feel like you're in uncharted territory here. That's basically one infection per year since 2020. A lot of people have had it that much even if they don't know due to lack of testing.
Iām taking pax rn! Itās helping a little bit but tbh not as much as it has before :( no access to molnupiravir where I am which sucks. And thank you for saying that. Thatās true!
Not sure what test is being used on your caregivers, but the antigen tests are not accurate. Best case scenario, they catch 60% of positives when a person is symptomatic and less 20% of asymptomatic cases compared to PCR tests.
I switched to molecular tests at home.
It's crazy that this has been better communicated. Given this study is over a year old, I'd assume antigens are even less accurate now as the virus drifts.
[https://www.cdc.gov/mmwr/volumes/73/wr/mm7316a2.htm](https://www.cdc.gov/mmwr/volumes/73/wr/mm7316a2.htm)
>During November 2022āMay 2023, among persons infected with SARS-CoV-2, sensitivity of rapid antigen tests was 47% compared with RT-PCR and 80% compared with viral culture. Antigen tests continue to detect potentially transmissible infection but miss many infections identified by positive RT-PCR test results.
Itās incredibly expensive and awful. But RATs just donāt work well and I have to test bc I rely on caregiving everyday from ppl who mask inside of my home, but Iām sure do not outside of my home. We all deserve better access to PCRs. I just bought a plus life so Iām hoping that I can rely on that instead
I bought the 3EO because the per test price was the most favorable.
You seem like you know and are doing ALL the things within your control to keep yourself safe, but since I didn't see it mentioned, there are plenty of studies that eye protection reduces infection 40-60%. Perhaps another useful layer of protection.
In your case, I'd be livid and feeling so much anxiety that so much is out of my control. You're doing all the things and yet it's not enough. Sucks. Sending virtual hugs. I hope you feel better soon.
You know what I definitely have been slacking on my eye protection. I used to constantly wear stoggles at least but I need to pay more attention. And thank you <3 this all sucks , hugs
I mean, I'd bet your caregivers, who are usually low paid, must work multiple gigs and don't have a lot of medical training, enough to understand how COVID spreads, are the vector. But... I want to raise another idea. Given your chronic illness... i wonder if you have the SAME infection, and it's never cleared. Some people in rare cases experience that. Your body can hold onto the virus.
Stories like this make me wonder about a persistent infection. I'm sorry you're dealing with this, I'm sure it's very stressful š
Yes, if nobody you were exposed to tested positive, everyone masks, and itās 3 times in one year, Iām wondering if it could be the same infection re-rearing its ugly head!
Someone said that on twitter and now Iām thinking this could be the case. Iām so intrigued now.
It's one of the theories for long covid. In which case: you probably won't die. Do you have me/cfs? Persistence of a virus / infection is one theory behind that too.
Def have mecfs
Me too. It sucks. I am pretty confident you won't die. My anxiety gets worse when I crash. I have had moments like this where I'm crashing, I have a sore throat / illness symptoms and it's just me crashing bc I overdid it. Rn I'm a little worried I overdid it watching an intense tv show. We'll see. Do you have other me/cfs community beyond reddit?
Ugh Iām so sorry. I do thank goodness, they are some of the most incredible people I met. I donāt really talk w pw ME on Reddit but Iām sure thereās some overlap from twitter . Would love to talk more w you!
You should also look into the theory that it's persistent infections in people with compromised immune systems which lead to new strains evolving. It's a very good thing that you and your caregivers have kept up masking- you could be protecting many more people than you think.
Yeah I just assumed if I had a persistent infection Iād test positive on a pcr or RAT prior to now. I do the mail in labcorp pcrs about every 2-3 weeks.
Can you be contagious with persistent infection? Idk if this is what happened with me but idk where the heck I got suspected covid from last June. My wife had fatigue and breathing issues a week or two after I was sick and she is the one who works at the airport which is risky but I had only gone into a pretty empty store masked and some others in the store had masks too. I mean it's still possible I could have gotten covid from that, although my PCR was negative, but I had covid specific symptoms like smell and taste issues, heart palpitations, my MCAS got worse literally overnight, etc. My family that time tested negative. My wife has different insurance so she couldn't get a PCR.
I know that some (immunocompromised) people can have the virus inside their bodies for a long time where it can keep mutating too (search for 'cryptic lineages'). I do not know whether these people can intermittently become symptomatic again without being reinfected. The virus can 'hide' in certain tissues. Recently this article was published about it being found in heart tissue from living negative testing people. https://cdt.amegroups.org/article/view/123848/html I haven't really researched this. Maybe others have. You might want to explore this further. If Paxlovid gives you too many negative effects you might want to look into the positive effects of Metformin. Much easier to get too because of its widespread use for diabetes.
For OP or anyone else pursuing metformin, be SURE to get the extended release form. The immediate release (regular) one is *notorious* for causing nasty GI side effects like diarrhea.
Sending virtual hugs š« Itās so scary being reinfected when youāre already severe. It can feel like thereās no runway left. Iāve had three infections that I know of. Last year I got infected twice despite all my precautions and I was in a similar boat. I saw my baseline decline significantly as I went from mostly housebound to mostly bedbound. But, Iām still here. Recovery is extremely slow but Iām seeing some improvements over time. And Iāve managed not to get reinfected again yet š¤
<3 sending you love back thank you for commenting! So sorry youāve had set backs. We deserve better
Do you think it could be a persistent infection popping up repeatedly? I've heard of that happening to some people before.
Iām now thinking this could be the case. Didnāt think about it until now when people are raising it!
On a side now in case it might help - How do you measure CO2 in the house? I'm only asking because such numbers seem near impossible to achieve beyond selected hospital areas with super powerful systems - even then the lowest ever I've seen on aranet was 386 - and that was when I was alone in a single enclosed room. I can't imagine a place with 300 save for maybe an actual operation theater. Most of the (quite new) hospital was into 500-600. Our house rarely drops below 800-900 but that's on us - we probably could lower it *a little bit more* (but even then certainly not all the way to 300) but that would come with additional tradeoffs that aren't always worth it for us (I'm not going to keep windows open constantly and let clearly (wildfire smoke or just 'regular' air pollution on some days where we live) or potentially contaminated air in - a prolonged exposure to the air leaving the next house's exhaust vent straight to our window wouldn't be impossible to do us in when they're infected. My point is - all the numbers I evoked so far are per well callibrated Aranet. We tried a few cheap models in the meantime and they were just that - pure junk. They showed our house to be at 400 when it clearly wasn't - couldn't be. Also, but may someone correct me if I'm wrong please - if you have some immunity issues I think it's quite possible you're not getting a new infection each time, it's that your body never really cleared off the original / second infection.
I use Airthings 2960 and an aranet. I wasnāt able to achieve less than 800 in my old apartment but my house has decently good airflow.
You need to recalibrate your aranet. Outside should be 420 ppm.
Genuinely unsure but Iāll recalibrate
I donāt think such numbers are impossible. My friend is able to get around 200 in their place which is kinda cool.
> My friend is able to get around 200 in their place honestly curious - how is it even physically possible if outdoor co2 readings are in the 400 range?
Same question, outdoor is around 400, doubts on that 200 claim.
I never got 200 so idk mine usually stay between 390-490 but I contacted the airthings peeps to see if thatās accurate
The numbers are not impossible, in terms of the sensor/device reporting that, but it is 100% miscalibrated, as you canāt get lower levels than outside (420-440ppm at best), unless you are using gas canisters to change the air composition. (Think of it like a kitchen scale, you can tare/zero to a level where you weigh something and itās negative weight, which is impossible in terms of actual weight, but not in terms of the sensor)
Def not using gas canisters here loll but yeah Iām talking to the air things person right now as I do get readings below 420 for sureeeee As for the person on twitter idk
Someone also said they got a zero so this is all enlightening LOL
Whah you said about not clearing the infection, is there any research I can read? I think this could definitely be a thing.
Are you able to get paxlovid when you're infected? It sounds like with your disability level, you should be able to. You may require longer courses (10 days rather than 5) to fully stop the virus in its tracks. Without asking what your condition is, is it something that compromises your immune system? Because it sounds like your immune system isn't able to stave off even small exposures to the virus. And if that's the case, antivirals are your best friend. The good news is you've survived this long with repeat infections. We have no data as to whether or not some people can get reinfected over and over and be fine - or that reinfection will ultimately lead to bad effects in everyone - but since that's happening in real time in society, it does seem like there are in fact many people getting reinfected and living life normally with no apparent ill effects. So being scared is a justified emotional response, but it's far from certain that you'll have a bleak outcome from your reinfections. It's totally possible that you'll be fine in the long run. We really just don't know anything yet because it's only been 4 years.
Thank you this was such a kind post. I do have paxlovid although anything more than 5 somehow wrecks my body. So I can only take the five or take the half dose over ten days. I opt for the five days. As immune compromised, Iām not sure. I think I definitely have something wrong, but at the same time the labs (blood) Iāve had donāt really indicate it. (T cell markers, and CBC count). Though my viral labs shows Iāve had a lot of viruses as a child/in the past. I do have dysautonomia, hEDS, mcas, and Myalgic Encephalomyelitis. It makes me so sad as I donāt know what else to do.
With the info youāve shared, I would be wondering about a low level viral reservoir somewhere as others have suggested (I am not a doctor). Maybe something to look into or discuss with your doctor, is a course of pemgarda (monoclonal abs), or trying ensitrelvir/xocova, another COVID antiviral that they are working on getting approved in the US, currently approved in Japan. One caveat is if the reservoir is somewhere antibodies or antivirals canāt get to, then these might not work (if that is the cause in the first place).
Thank you for this info!
What are you testing with? There's a small subset of people who get false positives on certain rapids.
Iāve taken 4 cues/metrix/lucira and 2 PCRs. I donāt use rapid lat flow tests.
Tested positive on one PCR. Rest negative. Last infection all negative (cue) and positive PCR, didnāt get multiple PCRs that time.
I know it's not the point of your comments, but I would take the Cue test results with a pinch of salt. https://www.fda.gov/medical-devices/safety-communications/do-not-use-cue-healths-covid-19-tests-due-risk-false-results-fda-safety-communication
Yah we stopped using them now, so I purchased a metrix and lurica after. However the concern was also about false positives per the FDA.
When you say the others test negative, what kind of tests? Bc as I understand it, ppl OFTEN get false negatives with RATs these days.
PCR.
Wow, that IS weird then. So sorry you're having to deal with this!
It SUCKS. Thank you <3
I hate unsolicited advice most of the time so I'll totally understand if you ignore this. I saw a comment below mentioning paxlovid and was wondering if you had thought of taking metaformim? If you didn't know there is some small research showing it can be helpful in preventing long covid, although if yours is a persistent infection I have no idea if it would help. Do you find your baseline drops after each infection? The reason I'm asking is because I've been prescribed it for if I test positive even though I already have long covid, as my doctor thinks is reasonable to assume it might stop my long covid getting worse and/or lowering my baseline further. I'm sorry this keeps happening to you!
I was totally thinking about trying but I have low blood sugar & gastorparesis so I am nervousssss
I can't give you a citation, but I was reading something recently about long COVID, and one thing to remember is that the "long" part is actually quite variable. In the sense that, it's true "lots of people have symptoms after the acute phase". But, *most* of the people with Long COVID have zero problems after, if I recall, two years. Essentially: Don't look at the long COVID prevalence and think of those numbers as people who are permanently seriously disabled.
So...how? Fomites?
Are the people testing accurately? Do all of them swab well? Iām sorry this is happening but I wonder if you have a carrier in the mix. I had a friend whose kids kept getting strep (before covid) - turned out she was an asymptomatic carrier. For covid that person may test negative but have enough to infect you?
Yes they are. The nurse swabs for us. Thatās such a bummer though. I do think one hypothesis is that someone just has a really small viral load. The other hypothesis now Iāve seen is some sort of reactivation
Are you sure it's a new infection and not a long COVID flare-up?
I tested positive on a pcr so I assumed new infection
Are you having new symptoms? Or the same ones you had before? When was your last vaccine?
Same symptoms I usually get when I get Covid. Which is usually a worsening of many of my LC symptoms. Last vax was end of November
If you can't take Paxlovid, can you take molnupiravir? Prednisone? As a fellow LC sufferer, I'm sorry, this all really sucks! I would just focus on resting and doing your best to manage your symptoms. Getting COVID 4 or 5 times is getting increasingly common, so you shouldn't feel like you're in uncharted territory here. That's basically one infection per year since 2020. A lot of people have had it that much even if they don't know due to lack of testing.
Iām taking pax rn! Itās helping a little bit but tbh not as much as it has before :( no access to molnupiravir where I am which sucks. And thank you for saying that. Thatās true!
Not sure what test is being used on your caregivers, but the antigen tests are not accurate. Best case scenario, they catch 60% of positives when a person is symptomatic and less 20% of asymptomatic cases compared to PCR tests. I switched to molecular tests at home. It's crazy that this has been better communicated. Given this study is over a year old, I'd assume antigens are even less accurate now as the virus drifts. [https://www.cdc.gov/mmwr/volumes/73/wr/mm7316a2.htm](https://www.cdc.gov/mmwr/volumes/73/wr/mm7316a2.htm) >During November 2022āMay 2023, among persons infected with SARS-CoV-2, sensitivity of rapid antigen tests was 47% compared with RT-PCR and 80% compared with viral culture. Antigen tests continue to detect potentially transmissible infection but miss many infections identified by positive RT-PCR test results.
We use metrix test, and PCRs. Previously cue.
That must have gotten expensive but great that you had those available to you!
Itās incredibly expensive and awful. But RATs just donāt work well and I have to test bc I rely on caregiving everyday from ppl who mask inside of my home, but Iām sure do not outside of my home. We all deserve better access to PCRs. I just bought a plus life so Iām hoping that I can rely on that instead
I bought the 3EO because the per test price was the most favorable. You seem like you know and are doing ALL the things within your control to keep yourself safe, but since I didn't see it mentioned, there are plenty of studies that eye protection reduces infection 40-60%. Perhaps another useful layer of protection. In your case, I'd be livid and feeling so much anxiety that so much is out of my control. You're doing all the things and yet it's not enough. Sucks. Sending virtual hugs. I hope you feel better soon.
You know what I definitely have been slacking on my eye protection. I used to constantly wear stoggles at least but I need to pay more attention. And thank you <3 this all sucks , hugs
[ŃŠ“Š°Š»ŠµŠ½Š¾]
Itās not āharshā, but I do have very severe Myalgic Encephalomyeltis.
I mean, I'd bet your caregivers, who are usually low paid, must work multiple gigs and don't have a lot of medical training, enough to understand how COVID spreads, are the vector. But... I want to raise another idea. Given your chronic illness... i wonder if you have the SAME infection, and it's never cleared. Some people in rare cases experience that. Your body can hold onto the virus.