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Long Covid - Experiences, Symptoms, Ongoing Effects... (1 Viewer)

We have treated ~13k patients with long COVID with FDA approved drugs but for off label use.

We are preparing a package to submit to the FDA.

PM me if you or a loved one is suffering and I will try to help.
Dentist's wife has long COVID... Lots of fatigue and a racing heart. He's permabanned here but I'm his best friend and could pass anything along

Please tell him that I hope his wife gets/feels better soon, that I’m glad to hear about his boat life and hope he’s getting all the chest candy he deserves.
 
Starting this thread because I've got long covid symptoms more than a year after having covid. I'm curious if anyone else here (or family/friends) has had any lingering issues. I still don't have my full taste and smell back. I'd say my taste is at 90 to 95% but smell maybe only at 75%. I was just doing some research and saw this from the mayo clinic which describes exactly what I'm experiencing especially the last sentence.

Could you experience unusual tastes and smells?

Phantosmia is the perception of a smell that doesn't exist, much like phantom limb pain. Regardless of the cause of loss of smell, patients can experience phantosmia. Often the phantom smell is unpleasant, such as the smell of smoke or rotten meat. Also, normally pleasant smells can be perceived as foul.


I've also noticed that I've felt more dizzy and disoriented occasionally. I've always had a fear of heights but for some reason that fear has gotten abnormally exacerbated the last six months or so. I have no idea if this is related to Covid but nothing else has changed in my life.

Curious if anyone has experienced this or other long term effects of Covid.
Another year later, how are you doing now? Fully recovered?
Thanks for checking in.

I’d say my taste is almost back to normal and my smell is not quite there. Probably at 90 to 95%. I can tell that things keep improving little by little.
 
We have treated ~13k patients with long COVID with FDA approved drugs but for off label use.

We are preparing a package to submit to the FDA.

PM me if you or a loved one is suffering and I will try to help.
Dentist's wife has long COVID... Lots of fatigue and a racing heart. He's permabanned here but I'm his best friend and could pass anything along

www.covidlonghaulers.com

is this all video meeting type of thing? dentist wife has a long covid clinic in KC.. though he said it doesn't seem like much is happening to help.
 
We have treated ~13k patients with long COVID with FDA approved drugs but for off label use.

We are preparing a package to submit to the FDA.

PM me if you or a loved one is suffering and I will try to help.
Dentist's wife has long COVID... Lots of fatigue and a racing heart. He's permabanned here but I'm his best friend and could pass anything along

Please tell him that I hope his wife gets/feels better soon, that I’m glad to hear about his boat life and hope he’s getting all the chest candy he deserves.

Audible laugh... he hasn't made a good chest dump mention to me in a few years.. maybe that's what got him permabanned
 
No way to know for sure if it is COVID related but my MIL got COVID about a year ago. She was sick but wasn’t major. She didn’t need a hospital or anything. Cleared up in about a week. However it seemed to have fried her brain. She had some minor signs of dimentia before or at least age related mental decline (she is 73). However, after having COVID she almost instantly fell off a cliff with her mental acuity. Her longterm memory is fine but she’s like Guy Pierce from Memento, can’t remember anything new. It’s so bad that when we are at dinner, we will order and then 20 seconds after the waiter walks away she will ask us why they haven’t brought the menus yet. I no longer eat meat and she asked me 5 times last night if I was ordering a steak. I explained I’m not eating meat and each time it was a total shock to her. I gave up the 5th time and just agreed with her that I should order a steak.

The doctors had some hope that if possibly COVID related that it could improve. I guess her most recent appointment the doctors said they have no more hope for improvement and it’s just a matter of trying to preserve what’s left. Trying to find a bright side to this, she’s much nicer and more easy going. She used to be pretty hard on her husband and two daughters. Just making rude comments or having unrealistic expectations. She also always had to have 100 things going on at once, roping everyone into all kinds of activities that only she cared about. With the mental decline, she’s become much more relaxed and kind.
 
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"Despite an overwhelming number of long COVID symptoms previously reported by other studies, we only found a few symptoms specifically related to an infection from SARS-CoV-2, the virus that causes COVID-19," says Chi-Ren Shyu. "Before we examined the data, I thought we would find an ample amount of the symptoms to be specifically associated with long COVID, but that wasn't the case."​
tl;dr the 7 symptoms are: fast-beating heart, hair loss, fatigue, chest pain, shortness of breath, joint pain, and obesity.
 

"Despite an overwhelming number of long COVID symptoms previously reported by other studies, we only found a few symptoms specifically related to an infection from SARS-CoV-2, the virus that causes COVID-19," says Chi-Ren Shyu. "Before we examined the data, I thought we would find an ample amount of the symptoms to be specifically associated with long COVID, but that wasn't the case."​
tl;dr the 7 symptoms are: fast-beating heart, hair loss, fatigue, chest pain, shortness of breath, joint pain, and obesity.

Interesting. Thanks.
 
I caught Delta in October ‘21 (Had the J&J vax in early ‘2021). Symptoms were very minor, but I did lose my taste and smell. I got it back within a month or so, except for onions. The smell of onions is terrible - like a dirty ashtray. I can smell them from a mile away but dammit I love onions. The taste is mostly fine though.
 

"Despite an overwhelming number of long COVID symptoms previously reported by other studies, we only found a few symptoms specifically related to an infection from SARS-CoV-2, the virus that causes COVID-19," says Chi-Ren Shyu. "Before we examined the data, I thought we would find an ample amount of the symptoms to be specifically associated with long COVID, but that wasn't the case."​
tl;dr the 7 symptoms are: fast-beating heart, hair loss, fatigue, chest pain, shortness of breath, joint pain, and obesity.
My family caught covid for the first time early January. The kids were never really sick, but my wife and I had heavy fatigue and respiratory issues. Though we are "better", she still has a rapid heart beat and fatigue and I have just fatigue and shortness of breath like when climbing out of the depths of Grand Central. Both of us are still coughing but I think it's mostly from irritated lungs and throat rather than congestion. I really, really hope this isn't long covid. This sucks.
 

"Despite an overwhelming number of long COVID symptoms previously reported by other studies, we only found a few symptoms specifically related to an infection from SARS-CoV-2, the virus that causes COVID-19," says Chi-Ren Shyu. "Before we examined the data, I thought we would find an ample amount of the symptoms to be specifically associated with long COVID, but that wasn't the case."​
tl;dr the 7 symptoms are: fast-beating heart, hair loss, fatigue, chest pain, shortness of breath, joint pain, and obesity.
My family caught covid for the first time early January. The kids were never really sick, but my wife and I had heavy fatigue and respiratory issues. Though we are "better", she still has a rapid heart beat and fatigue and I have just fatigue and shortness of breath like when climbing out of the depths of Grand Central. Both of us are still coughing but I think it's mostly from irritated lungs and throat rather than congestion. I really, really hope this isn't long covid. This sucks.
Sorry to hear that bud.

I was diagnosed for the first time on Jan 1. Wasn't bad at all and was fine within 4 days. 2 days ago I just felt awful out of the blue and I'm still testing positive. The doctor isn't sure if it is leftover from the first time, or she said she has seen a rise in rebound cases. This time has been worse but I'm turning the corner, so the total time will probably be about the same.
 

"Despite an overwhelming number of long COVID symptoms previously reported by other studies, we only found a few symptoms specifically related to an infection from SARS-CoV-2, the virus that causes COVID-19," says Chi-Ren Shyu. "Before we examined the data, I thought we would find an ample amount of the symptoms to be specifically associated with long COVID, but that wasn't the case."​
tl;dr the 7 symptoms are: fast-beating heart, hair loss, fatigue, chest pain, shortness of breath, joint pain, and obesity.
My family caught covid for the first time early January. The kids were never really sick, but my wife and I had heavy fatigue and respiratory issues. Though we are "better", she still has a rapid heart beat and fatigue and I have just fatigue and shortness of breath like when climbing out of the depths of Grand Central. Both of us are still coughing but I think it's mostly from irritated lungs and throat rather than congestion. I really, really hope this isn't long covid. This sucks.
Sorry to hear that bud.

I was diagnosed for the first time on Jan 1. Wasn't bad at all and was fine within 4 days. 2 days ago I just felt awful out of the blue and I'm still testing positive. The doctor isn't sure if it is leftover from the first time, or she said she has seen a rise in rebound cases. This time has been worse but I'm turning the corner, so the total time will probably be about the same.
Hang in there buddy! (let's play some L4D)
 
We have treated ~13k patients with long COVID with FDA approved drugs but for off label use.

We are preparing a package to submit to the FDA.

PM me if you or a loved one is suffering and I will try to help.
Dentist's wife has long COVID... Lots of fatigue and a racing heart. He's permabanned here but I'm his best friend and could pass anything along

www.covidlonghaulers.com
I don't know enough to openly challenge this... but at the same time I question it. So many pharmas/labs coming out of the woodworks making claims.

I'd like to see the business model and reimbursement.

If it is legit - more power to you, But that website doesn't portray it to me.
 
We have treated ~13k patients with long COVID with FDA approved drugs but for off label use.

We are preparing a package to submit to the FDA.

PM me if you or a loved one is suffering and I will try to help.
Dentist's wife has long COVID... Lots of fatigue and a racing heart. He's permabanned here but I'm his best friend and could pass anything along

www.covidlonghaulers.com
I don't know enough to openly challenge this... but at the same time I question it. So many pharmas/labs coming out of the woodworks making claims.

I'd like to see the business model and reimbursement.

If it is legit - more power to you, But that website doesn't portray it to me.

Well, considering I've been talking about something along these lines since COVID started, I think I have credibility here but if you choose to be skeptical, that's your choice and privilege.

You're welcome to read any of our peer reviewed papers which have been leading up to this point or wait for the results of our trial.

At any rate, I've been on this board for 20+ years and don't recognize your name.




ETA: Jakey has 5 posts here and no credibility.
 
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The Trump administration is shuttering HHS' long Covid office as part of its reorganization, according to an internal email seen by Politico. The email was sent Monday by Ian Simon, the head of the Office of Long Covid Research and Practice. It said the closing is part of the Department of Health and Human Services’ reorganization.
“We did the not-sexy, behind-the-scenes work that it takes to make the federal government function well,” the staffer said. “We made sure doctors at the VA are talking to scientists and researchers and epidemiologists at CDC and NIH — that they’re learning from each other. It was a very, very cost effective way to make sure that people are talking to each other and that we're making the best use of federal resources.”
The Centers for Disease Control and Prevention estimates that 6 percent of U.S. adults suffer from some form of long Covid, while the National Institutes of Health believes that as many as 23 million people have the illness, which can range in severity from mild to debilitating.
https://www.yahoo.com/news/trump-administration-shuttering-long-covid-012118769.html
 
Since my last post with this link posting a legitimate science article was inexplicably deleted, will try again.

Long Covid in healthcare workers
Since my response was also deleted, seemed appropriate to make reference that one of the quoted docs was someone i worked with. I'll just say I'm glad to see people are still working on this and trying to find solutions. I do wish it was something people could be comfortable talking about as it's far from limited to healthcare workers.
 
We are falling further and further behind globally on this subject. The ones continuing to trudge forward are doing wonderful work, but it's not easy. NIH, in May had announced they were beginning a huge study, but its been put on hold. The RECOVER initiative is still going as far as I am aware, but funding is limited. Last I saw, the best work being done globally (still includes MANY educational institutions in the US) is the LCRC.
 
I personally know two people with long COVID that can be absolutely debilitating to the point they’ve both considered suicide numerous times. Doctors just have basically nothing that they can do to help them.
I had a friend i met through this experience that opted for Switzerland. His suffering was beyond what people can understand from this. To say he was high functioning and successful in life would be a disservice to all he accomplished. In my conversations about this I've tried to be as open and honest as possible and to say somewhere around 2 years bedridden the thought didn't cross my mind would a lie.

There is help. I can attest to that, but your local PCP isn't going to have the answers. I'm a science guy, but there isn't time for the data when your life is hanging in the balance. I know the medical guys might not approve of my methods, but I went to hell and back and am 99% recovered to my old self. Far too many that sat around waiting only fell further into it and my fear is they'll never recover.
 
Wife has been dealing with it for over 2.5 years now. She's a shell of her former self physically but thankfully most of her brain functionality came back.

Man those were some dark days initially. She would literally sleep 20+ hours a day for 6 weeks straight. Then it was down to 16-18 and gradually has gotten somewhat back to normal. She's always needed a lot of sleep, but to a normal person it would be considered extreme. It's the cognitive piece that was scary as hell. She could not speak, or rather drift off in a conversation, lose her train of thought, be fighting her brain to insert a word she knew she wanted to say. She had next to zero memory, so we would have the same conversation a couple times during a 5 minute phone call. All this from someone who prides herself as being a very bright individual. I could see her losing hope.

Current state: Sleep is still a challenge, and she gets wiped out very very easily. Thankfully she's operating cognitively at about 90% which is about 110% of my ability so she's back to running circles around me. She went and got a sleep study done and now has a cpap that she's adjusting to. Hopefully that will restore some base energy so she can begin to work on being healthier physically, give her a better mental situation, and overall feel better.

Hopefully the article Culdeus posted a year ago gains some steam and they can find ways to help the body recover.
 
Wife has been dealing with it for over 2.5 years now. She's a shell of her former self physically but thankfully most of her brain functionality came back.

Man those were some dark days initially. She would literally sleep 20+ hours a day for 6 weeks straight. Then it was down to 16-18 and gradually has gotten somewhat back to normal. She's always needed a lot of sleep, but to a normal person it would be considered extreme. It's the cognitive piece that was scary as hell. She could not speak, or rather drift off in a conversation, lose her train of thought, be fighting her brain to insert a word she knew she wanted to say. She had next to zero memory, so we would have the same conversation a couple times during a 5 minute phone call. All this from someone who prides herself as being a very bright individual. I could see her losing hope.

Current state: Sleep is still a challenge, and she gets wiped out very very easily. Thankfully she's operating cognitively at about 90% which is about 110% of my ability so she's back to running circles around me. She went and got a sleep study done and now has a cpap that she's adjusting to. Hopefully that will restore some base energy so she can begin to work on being healthier physically, give her a better mental situation, and overall feel better.

Hopefully the article Culdeus posted a year ago gains some steam and they can find ways to help the body recover.
Can you bump the link to the article?

If you want to DM me about any of this i went through all of that and more and might have some helpful ideas/resources. I've talked to just about every researcher in this country and some from other countries. My feelings won't be hurt if you've got it under control, but the offer stands whenever.
 
I'll talk real quick about my worst symptom and that was insomnia, but not just any insomnia. It started out as just being unable to wind down and fall asleep and my palpitations were so bad i couldn't lay on my left side. I'd average maybe 2 hours of sleep a night. Tired but wired kind of thing. What became the worst symptom i had though was hypnic jerks. Everyone has that sudden jerk that would wake you up, but i would have 100s (probably less than that, but like 10-15 every hour) in the course of the night. Each and every time i was about to fall asleep i would jerk awake. This would go on for 3 nights or so in a row and then I'd crash and sleep 12 hours and the cycle would start again. I was at a point where i was taking edibles, benadryl, ambien and a Valium and still only sleep maybe an hour during these episodes. These drugs helped, but I'd only do two nights in a row and then 10 days off to avoid dependencies. I had this to varying degrees for probably close to 4 years. Pretty sure this is what hell on earth feels like. This wasn't a super common symptom, but also not unheard of from long covid.
 
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It's about ten posts up but @The Longtime Lurker

Yes, I remember reading about this awhile back. Thanks for the bump.
 
It's about ten posts up but @The Longtime Lurker

Yes, I remember reading about this awhile back. Thanks for the bump.

I still, at random times, lose my sense of taste for no reason whatsoever.
Mine is my smell. I have trouble with that initial sense of smell sometimes.
How about mental health?
-Can someone be diagnosed with PTSD from the CV-19/Pandemic and the fallout over the last several years?
 
It's about ten posts up but @The Longtime Lurker

Yes, I remember reading about this awhile back. Thanks for the bump.

I still, at random times, lose my sense of taste for no reason whatsoever.
Mine is my smell. I have trouble with that initial sense of smell sometimes.
How about mental health?
-Can someone be diagnosed with PTSD from the CV-19/Pandemic and the fallout over the last several years?
I don't know about PTSD, but they'll happily give you an anxiety diagnosis. Probably rightfully so in a lot of cases.
 
So, I have never been diagnosed with Covid. My kids have had Covid but I have never tested positive. I've certainly gotten my share of what I would call Covid-like symptoms, but never to the point where I felt sick if that makes sense. Add in the occasional cold and such.

But I swear as I read through this thread a lot of those long term effects you guys are posting about sure could explain a lot of the last few years of my life. A lot of fatigue, low energy some days, loss of words and such....

I know I'm getting older (56) but my question to the group is:

Is it possible to have gotten Covid with minimal symptoms but still get effects of long term Covid? I'm guessing no but I'm starting to wonder.
 
So, I have never been diagnosed with Covid. My kids have had Covid but I have never tested positive. I've certainly gotten my share of what I would call Covid-like symptoms, but never to the point where I felt sick if that makes sense. Add in the occasional cold and such.

But I swear as I read through this thread a lot of those long term effects you guys are posting about sure could explain a lot of the last few years of my life. A lot of fatigue, low energy some days, loss of words and such....

I know I'm getting older (56) but my question to the group is:

Is it possible to have gotten Covid with minimal symptoms but still get effects of long term Covid? I'm guessing no but I'm starting to wonder.
Yes it's possible. Even an asymptomatic infection has been shown to still have a risk for LC.
 
It's about ten posts up but @The Longtime Lurker

Yes, I remember reading about this awhile back. Thanks for the bump.

I still, at random times, lose my sense of taste for no reason whatsoever.
Mine is my smell. I have trouble with that initial sense of smell sometimes.
How about mental health?
-Can someone be diagnosed with PTSD from the CV-19/Pandemic and the fallout over the last several years?
I definitely had some type of anxiety right in the short term after my first 2 times getting covid. My fear of heights was exacerbated and even now from time to time I'll stand up and have dizziness or disorientation, but nothing severe enough to go see a doc.
 
So, I have never been diagnosed with Covid. My kids have had Covid but I have never tested positive. I've certainly gotten my share of what I would call Covid-like symptoms, but never to the point where I felt sick if that makes sense. Add in the occasional cold and such.

But I swear as I read through this thread a lot of those long term effects you guys are posting about sure could explain a lot of the last few years of my life. A lot of fatigue, low energy some days, loss of words and such....

I know I'm getting older (56) but my question to the group is:

Is it possible to have gotten Covid with minimal symptoms but still get effects of long term Covid? I'm guessing no but I'm starting to wonder.
I don't see why it wouldn't be possible. Its likely not probable, but there are ALWAYS exceptions unfortunately.
 
So, I have never been diagnosed with Covid. My kids have had Covid but I have never tested positive. I've certainly gotten my share of what I would call Covid-like symptoms, but never to the point where I felt sick if that makes sense. Add in the occasional cold and such.

But I swear as I read through this thread a lot of those long term effects you guys are posting about sure could explain a lot of the last few years of my life. A lot of fatigue, low energy some days, loss of words and such....

I know I'm getting older (56) but my question to the group is:

Is it possible to have gotten Covid with minimal symptoms but still get effects of long term Covid? I'm guessing no but I'm starting to wonder.
I don't see why it wouldn't be possible. Its likely not probable, but there are ALWAYS exceptions unfortunately.

3rd paragraph
 
-Can someone be diagnosed with PTSD from the CV-19/Pandemic and the fallout over the last several years?
Last I knew, PTSD had four characteristics:
1. Intrustion Symptoms
2. Avoidance Symptoms
3. Exposure to Trauma
4. Negative alterations in Cognition/Mood

Maybe they've changed it up to expand the definition, but it was relatively specific.
 

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