Long Covid

[Teaching3bears]

Right now, my major concern with Omicron is long Covid.  It seems like omicron could cause long Covid because all the other variants did and long Covid often comes from mild cases.  I have tried to Google the prevalence of long Covid but i could not find a definitive answer. It seems it ranges from 7-37% of people who catch Covid.  
I’m surprised it’s not talked about more.  Will it not cause big problems for healthcare and the economy?  I do not believe that we will find cures or treatments for it easily.  It seems like one of those chronic conditions that some people might find help with dietary changes and supplements but that many will really suffer.  The thing is,  it might affect a much greater number of people than the chronic autoimmune-type conditions we had before Covid. 

[desertflower]

I was wondering about this too. Do we get long covid even though we are booster and it’s a mild case. 
you are right it’s not talked about much. 
I will be listening in to hear what others say. 

[Carrie12345]

For some reason, I haven’t been as worried with  Omicron. That reason is probably because it isn’t being talked about much!

I just found out that my cousin’s young teen has been having terrible neuro issues since her September 2020 infection. So I am starting to tip back into worry. It isn’t as if omicron has been around all that long to learn a whole lot about long hauling with that specific variant. 

[Ausmumof3]

I have seen about 20pc quoted but that includes things like loss of taste and smell. Because that’s a neurological symptom it’s more concerning. There is certainly studies showing that in some people the virus persists for many months.  

[Ali in OR]

I have a 16 yo student with it--had OG Covid in Nov 2020 pre-vaccines. It is having a huge effect on his life. He misses our first period of the day class at least weekly. He has digestive issues, dysautonomia, body can't regulate heat right, faints, low blood pressure, tires easily, can't play sports, and it takes everything in him to try to stay caught up in classes. He's a year out and they're working on treating symptoms, but I can sense that it's frustrating that there is no improvement in the underlying condition. My coworker had Covid at about the same time, mild case, but taste and smell is still messed up. She can't eat limes for instance--tastes like dirt. She just avoids some foods, no huge impact on her life, but I'm sure she'd rather have her sense of taste back to normal.

I have not seen data to see whether the incidence rate of long Covid is different for vaccinated people--if anyone knows of this data, please share.

Edited December 31, 2021 by Ali in OR

[Hilltopmom]

A close family member of mine is dealing with it. They are a HCW & were vaccinated. Early 40s, healthy, active pre covid. Did not have severe case- basically asymptomatic.

Lost hospital management job due to being out so much- severe headaches, brain fog bad enough to not be able to treat patients, intense fatigue. Treatment has helped and they are back at hospital- now working in ICU with Covid patients per diem since salaried job was lost. Still dealing with less severe headaches, fatigue. It’s been a year. 
I would not wish it on anyone. For awhile QOL was so bad that there was severe depression & hopelessness. 
Was just accepted into some study of effects.

A teacher across the hall from me had mild case a year ago & is just getting taste and smell back- not life threatening but it’s made eating very difficult for her.

Edited December 31, 2021 by Hilltopmom

[Faith-manor]

A neighbor died of long covid. Had covid, very mild like a cold, back in March - so Delta variant - and then began developing neurological and heart conditions all linked to covid. His conditions were difficult to treat, and his heart kept getting worse and worse. He eventually had what his wife says the cardiologist called a "covid heart attack" and they could not resuscitate him. He was 49.

Long covid worries me more than a case of ICU covid ending in death right away. It could devastate us financially as BCBS of Michigan spends a lot of time finding ways of weaseling out of paying medical bills. And if DH got long covid, he would eventually lose his job and that means losing our medical insurance. Even if he could get disability and medicaid, I would have no medical insurance, and the pandemic has so completely gutted the fine arts that the chances of me finding a job in my field that offers group medical or enough salary to float us along AND pay for health insurance for me and our two sons still on our policy is next to zilch.

So we are still committed to being as careful as we can hoping to not got it during this wave and especially because the hospital system in our region is collapsing.

[Mrs Tiggywinkle]

My husband likely had Covid very early on—very early March 2020.  There was no testing available but he had been caring for ARDS patients for a couple weeks.  We had a streak of  very young patients(19-45) in February and early March of 2020 develop ARDS and what we now recognize as Covid pneumonia out of the blue. Then DH got really sick with pneumonia.  He had antibodies but of course could have had an asymptomatic infection, but we and his doctors think he likely had a very early Covid infection.  He still has cardiac issues, and his cardiologist has officially diagnosed him with long Covid.  Mostly he gets fatigued now very easily and has a lot of palpitations and chest discomfort.    So much is still unknown, but his medical team is convinced it’s long Covid.

A year and two months out, and everything still tastes and smells terrible to me.  I’ve lost a lot of weight—almost a hundred pounds since April 2020 which was my first bout of Covid. I’ve gone from a 14/16 to a size 4 and I suspect I can wriggle into a 2.  I miss food.

[busymama7]

I think it's too early to know if omicron will lead to as many long covid cases. On the one hand, there seems to be less neurological symptoms like loss of taste/smell.  That could indicate that it isn't as systemic, maybe.   On the other hand, most long haulers had mild disease, weren't hospitalized etc.  Some were but man it really seems like most are like me. Managed at home and figured that was that until it really really wasn't.  So just because so many cases are mild doesn't really mean it isn't a nasty disease with long term complications.  

I do seem to recall a study that indicated a 50% reduction in long covid in breakthrough cases. That would have been earlier variants if course. 

[Lawyer&Mom]

1 hour ago, Mrs Tiggywinkle said:

My husband likely had Covid very early on—very early March 2020.  There was no testing available but he had been caring for ARDS patients for a couple weeks.  We had a streak of  very young patients(19-45) in February and early March of 2020 develop ARDS and what we now recognize as Covid pneumonia out of the blue. Then DH got really sick with pneumonia.  He had antibodies but of course could have had an asymptomatic infection, but we and his doctors think he likely had a very early Covid infection.  He still has cardiac issues, and his cardiologist has officially diagnosed him with long Covid.  Mostly he gets fatigued now very easily and has a lot of palpitations and chest discomfort.    So much is still unknown, but his medical team is convinced it’s long Covid.

A year and two months out, and everything still tastes and smells terrible to me.  I’ve lost a lot of weight—almost a hundred pounds since April 2020 which was my first bout of Covid. I’ve gone from a 14/16 to a size 4 and I suspect I can wriggle into a 2.  I miss food.

I’ve lost 70 pounds since my covid infection in March 2020.  For me it was gastrointestinal issues, food still tastes fine.  Even after my diarrhea resolved it turns out I wasn’t digesting fat properly.  (Apparently your poop isn’t supposed to float. Who knew?)  I’m doing better on digestive enzymes, and I eat coconut oil daily, which is an medium chain fat which is easier to digest.  I’m not sure if any of this might apply to you, but with your drastic weight loss I wanted to share.  

[Ting Tang]

Does anyone have any examples/stories of children dealing with long Covid?  That is what worries me. A mild case, but the virus sticking around in the body to wreak havoc.  And I imagine that can happen with vaccines, too?  😞 

[Faith-manor]

Just now, KrisTom said:

Does anyone have any examples/stories of children dealing with long Covid?  That is what worries me. A mild case, but the virus sticking around in the body to wreak havoc.  And I imagine that can happen with vaccines, too?  😞 

I do not know anyone who has a child with long term, adverse vaccine damage. I know of two families each with a child that has long covid. Neurological and heart damage, extreme fatigue such that they are not able to attend school, church, etc. and only leave the house for medical appointments. At this time, so little is known about long covid in children, there is very little the doctors can do for these children. Parents are just trying to help build them up with vitamins and minerals, very healthy food, taking them outside for fresh air, but really just no treatment plan at this time. One child is 7, and the other is 12.

[Hilltopmom]

Not covid but my 8 year old has long term neurological damage from the flu at age 4. Any Virus can cause PANS. 

[Ting Tang]

8 minutes ago, Faith-manor said:

I do not know anyone who has a child with long term, adverse vaccine damage. I know of two families each with a child that has long covid. Neurological and heart damage, extreme fatigue such that they are not able to attend school, church, etc. and only leave the house for medical appointments. At this time, so little is known about long covid in children, there is very little the doctors can do for these children. Parents are just trying to help build them up with vitamins and minerals, very healthy food, taking them outside for fresh air, but really just no treatment plan at this time. One child is 7, and the other is 12.

I am so very sorry to read these stories.  😞  Did these children have any risk factors, such as weight issues, underlying conditions, etc?  Were there cases mild or more severe?  And I am so sorry about the flu causing damage.  I had a nephew who was hospitalized, and he'd received a flu vaccine.  He did not have any underlying conditions.  We've dealt with lead poisoning--which is not contagious---but it has caused both physical and neurological problems.  Some suggested we not vaccinate for other childhood illnesses, but our pediatrician said to, and so we did.

[Faith-manor]

4 minutes ago, Hilltopmom said:

Not covid but my 8 year old has long term neurological damage from the flu at age 4. Any Virus can cause PANS. 

Yes, that is the thing that is sometimes forgotten. And some bacteria, like strep can have big time, long term consequences.

[busymama7]

My daughter who had covid with me seemed to have lingering issues but it was a mild and honestly if I hadn't been paying attention because of me I probably wouldn't have really noticed.  She had repeated low grade fevers and headaches (at the same time). That was her only covid symptom too.  She also seemed more fatigued than I think is normal for a 7 year old but it didn't interfere with life. Just she would put herself to bed early sometimes and say she was super tired.  Again not really noticable except I was looking. It lasted about 6 months but shes been really fine for the last 6-8 months or so. She did seem to get more colds/minor sickness but she's the youngest and more likely be the one picking up stuff so that also wasn't definitively long covid.  Maybe she had a slightly reduced immune system though. Maybe.  

 

[rebcoola]

My friends 12 yr old still has terrible rashes all over her arms.  She had a mild case last January 

[Faith-manor]

2 hours ago, KrisTom said:

I am so very sorry to read these stories.  😞  Did these children have any risk factors, such as weight issues, underlying conditions, etc?  Were there cases mild or more severe?  And I am so sorry about the flu causing damage.  I had a nephew who was hospitalized, and he'd received a flu vaccine.  He did not have any underlying conditions.  We've dealt with lead poisoning--which is not contagious---but it has caused both physical and neurological problems.  Some suggested we not vaccinate for other childhood illnesses, but our pediatrician said to, and so we did.

No, the children according to their parents, were very healthy.

[Ting Tang]

3 hours ago, rebcoola said:

My friends 12 yr old still has terrible rashes all over her arms.  She had a mild case last January 

I'm so sorry for her and for her family. 😞

[Ting Tang]

1 hour ago, Faith-manor said:

No, the children according to their parents, were very healthy.

Oh no.  😞  Of course, even if a child has underlying conditions, it would still be sad to me.  But whenever I tell things to DH, he asks, "and what did he or she look like?"  He thinks this only affects overweight people and old people, with very few exceptions.  And one day I will be old, and I hope others will think about my welfare, too (not that I am young anymore!).

[Lawyer&Mom]

20 hours ago, rebcoola said:

My friends 12 yr old still has terrible rashes all over her arms.  She had a mild case last January 

Lots of people have been able to control their LongCovid mast cell issues, including rashes, with antihistamines, specifically H1 blockers like Allegra *and* H2 blockers like Pepcid.  (You need both.) 

[fairfarmhand]

On 12/31/2021 at 10:16 AM, Mrs Tiggywinkle said:

My husband likely had Covid very early on—very early March 2020.  There was no testing available but he had been caring for ARDS patients for a couple weeks.  We had a streak of  very young patients(19-45) in February and early March of 2020 develop ARDS and what we now recognize as Covid pneumonia out of the blue. Then DH got really sick with pneumonia.  He had antibodies but of course could have had an asymptomatic infection, but we and his doctors think he likely had a very early Covid infection.  He still has cardiac issues, and his cardiologist has officially diagnosed him with long Covid.  Mostly he gets fatigued now very easily and has a lot of palpitations and chest discomfort.    So much is still unknown, but his medical team is convinced it’s long Covid.

A year and two months out, and everything still tastes and smells terrible to me.  I’ve lost a lot of weight—almost a hundred pounds since April 2020 which was my first bout of Covid. I’ve gone from a 14/16 to a size 4 and I suspect I can wriggle into a 2.  I miss food.

 

On 12/31/2021 at 11:57 AM, Lawyer&Mom said:

I’ve lost 70 pounds since my covid infection in March 2020.  For me it was gastrointestinal issues, food still tastes fine.  Even after my diarrhea resolved it turns out I wasn’t digesting fat properly.  (Apparently your poop isn’t supposed to float. Who knew?)  I’m doing better on digestive enzymes, and I eat coconut oil daily, which is an medium chain fat which is easier to digest.  I’m not sure if any of this might apply to you, but with your drastic weight loss I wanted to share.  

My dd19 lost 10-15 pounds in the first 3-4 months after her covid infection. Which doesn't sound like a lot until you consider that at her normal weight, she is a petite 112-115. So she got down to 98 pounds, simply skeletal. She's 5 ft 1 inches tall. It was super scary and she just couldn't eat. She struggled with severe anxiety and depression, though our family went through a very difficult time around that time so I;m not sure what was that or the actual Covid stuff. 

She finally can eat some stuff. This summer, our goal was to get her eating and retrain her sense of smell so things didn't trigger her gag reflex. She's finally gotten to where she can eat most things. But she still can't eat eggs, anything with garlic or onion. Still beef and chicken don't smell appealing, but she can eat it. She's gotten back to her normal weight, though both vaccines triggered relapses with eating. I'm hoping that an Omicron infection doesn't set us back with her again. 

[rebcoola]

1 hour ago, Lawyer&Mom said:

Lots of people have been able to control their LongCovid mast cell issues, including rashes, with antihistamines, specifically H1 blockers like Allegra *and* H2 blockers like Pepcid.  (You need both.) 

I believe she is controlled as in its comfortable but it's still shows all down her arms.  

[KSera]

23 minutes ago, fairfarmhand said:

I'm hoping that an Omicron infection doesn't set us back with her again. 

I’ve been wondering about this. Do we know anything about how a subsequent infection tends to infect those recovered/recovering from long Covid? Too soon to know with Omicron, I’m sure, but prior variants? We still don’t know if I had long Covid or some other post viral fatigue syndrome, and I’ve been wondering what would be most likely if I end up unable to dodge Omicron despite all my best efforts. 

[alisoncooks]

5 hours ago, fairfarmhand said:

But she still can't eat eggs, anything with garlic or onion. Still beef and chicken don't smell appealing, but she can eat it.

The above is very true for my dd and I, as well.  Coffee is still unpleasant as well. 😞