Help! Long COVID round 2

Posted by kellyhart @kellyhart, Jun 15 7:52pm

Hello! Newbie here. Here’s a little backstory:
COVID April 2020
Moderna vaccine Jan-March 2021
COVID May 17, 2022

Other neuro history: concussion July 2020; balance issues and numbness / tingling post pardum in 2008. Tested for MS but nothing showed up.

March of 2021 was the start of me slowly declining. My diagnosis came in the fall after many tests and consults, as a diagnosis of exclusion really, as we were all just starting to hear about long COVID. Cognitive issues, hearing issues, balance issues, ears ringing, sensitivity to heat where it felt like my ears would fill up and I’d get confused/ acted drunk with slurred speech. I got weaker and weaker. Couldn’t drive, I’d hit a few things it was crazy. I’d walk into my daughters volleyball game and get completely overloaded sensory wise and feel as if I was losing my balance. I’d get quiet snd confused. Numbness and tingling. Very very slow processing.

The recovery from COVID again has been scary. I was given the anti viral which helped me recover symptom wise acutely but the fatigue as bd brain fog has been awful. I’m back to work with shorter days and slowly trying to get it together. But now symptoms of last summer are slowly creeping back in. Headaches, ear/ jaw pain, I fell on Sunday. My legs just have out. My legs are burning and weak walking the halls at work. My breathing is a little better but I still have trouble.

I’m trying to get an appointment at a long COVID clinic. This is all so scary. Any tips/ advice?
Since last year I’m on some supplements to boost my immunity. 2 inhalers. 3 medications for heart/ blood pressure. And now I feel like I took one step forward snd 2 steps back.

Has anyone had long haulers twice?
Has anyone experienced it after the vaccine?

Interested in more discussions like this? Go to the Post-COVID Recovery & COVID-19 group.

Strange you should mention April 2020, that’s the month and year my first encounter with Covid. What I’m about to say was documented by scientists later that year. I was beginning to feel sick April 7th, by the 10th, I was in trouble but didn’t think it was Covid. By the 20th, I was showing signs of having Covid and rushed to the hospital and placed in an isolation room. Remember, this is when the pandemic hit the United States and everybody was scared to touch anyone. No here’s how the hospital accidentally gave me Covid and that scientist eventually proved. My nose was broken in 1962 and I can not breathe thru the right nostril at all. When they tested me for Covid, they shoved the probe all the way up to the upper sinus. That’s what scientist said they gave me Covid. What happened was, their had to be virus bugs just inside my right nostril, not enough to give a positive results but enough to be forced into the upper sinus. There, the virus bugs attached to the vein and slowly worked their way into my blood and brain. This is where my disaster begins and so does my neurological problems. The virus attacked that part of the brain that causes road rage and caused me to rip my big toenail completely off because I couldn’t clip it the way I wanted. I went blind, total darkness and crawled on the floor looking for a light switch, on the floor? I cut my beautiful hair off because it kept falling in my face. From there it caused me to see things that weren’t they. Since it’s in the blood, not the respiratory system, it went after my heart, causing multiple problems and then my kidneys. The way the virus strain got to me was brought to me by people visiting my daughter from NYC, were this strain was discovered that caused neurological symptoms, not respiratory. I’ve had 3 other cases of Covid that have gotten into my lungs and I’m now a long hauler with heart, kidney and now brain damage and must go get 3 MRI’s on June 22nd to find out why l have such severe head pain from a seizure I had March 4th 2022 and May 2020 during a battle with Covid. Have any questions?

REPLY

Welcome, @kellyhart. There are several members like @lindamarie1949 @dubecates @zthinker69 @thomason who have had COVID twice and who are dealing with long COVID. I hope you also saw @becky1024's helpful post and question to you.

You may also appreciate these related discussions:
– Stalled Recovery: What helps you get back on track? https://connect.mayoclinic.org/discussion/stalled-recovery/
– Is this a COVID crash? Any suggestions on how to stop a crash? https://connect.mayoclinic.org/discussion/the-covid-crash/

Kelly, you mentioned that you are looking for a post COVID care clinic. Do you have one close to you? Have you checked out Survivor Corps'listing of clinics https://www.survivorcorps.com/pccc?

REPLY
@becky1024

Strange you should mention April 2020, that’s the month and year my first encounter with Covid. What I’m about to say was documented by scientists later that year. I was beginning to feel sick April 7th, by the 10th, I was in trouble but didn’t think it was Covid. By the 20th, I was showing signs of having Covid and rushed to the hospital and placed in an isolation room. Remember, this is when the pandemic hit the United States and everybody was scared to touch anyone. No here’s how the hospital accidentally gave me Covid and that scientist eventually proved. My nose was broken in 1962 and I can not breathe thru the right nostril at all. When they tested me for Covid, they shoved the probe all the way up to the upper sinus. That’s what scientist said they gave me Covid. What happened was, their had to be virus bugs just inside my right nostril, not enough to give a positive results but enough to be forced into the upper sinus. There, the virus bugs attached to the vein and slowly worked their way into my blood and brain. This is where my disaster begins and so does my neurological problems. The virus attacked that part of the brain that causes road rage and caused me to rip my big toenail completely off because I couldn’t clip it the way I wanted. I went blind, total darkness and crawled on the floor looking for a light switch, on the floor? I cut my beautiful hair off because it kept falling in my face. From there it caused me to see things that weren’t they. Since it’s in the blood, not the respiratory system, it went after my heart, causing multiple problems and then my kidneys. The way the virus strain got to me was brought to me by people visiting my daughter from NYC, were this strain was discovered that caused neurological symptoms, not respiratory. I’ve had 3 other cases of Covid that have gotten into my lungs and I’m now a long hauler with heart, kidney and now brain damage and must go get 3 MRI’s on June 22nd to find out why l have such severe head pain from a seizure I had March 4th 2022 and May 2020 during a battle with Covid. Have any questions?

Jump to this post

Thank you for sharing. You’ve been through a lot. I wish we had answers, although we know a lot more now than we did a year ago. Good Luck!

REPLY
@colleenyoung

Welcome, @kellyhart. There are several members like @lindamarie1949 @dubecates @zthinker69 @thomason who have had COVID twice and who are dealing with long COVID. I hope you also saw @becky1024's helpful post and question to you.

You may also appreciate these related discussions:
– Stalled Recovery: What helps you get back on track? https://connect.mayoclinic.org/discussion/stalled-recovery/
– Is this a COVID crash? Any suggestions on how to stop a crash? https://connect.mayoclinic.org/discussion/the-covid-crash/

Kelly, you mentioned that you are looking for a post COVID care clinic. Do you have one close to you? Have you checked out Survivor Corps'listing of clinics https://www.survivorcorps.com/pccc?

Jump to this post

Thanks, I’ll check this all out. I have a few calls out but no success so far.
Mayo won’t take me.
April 2020 my PCR was negative and they diagnosed me from symptoms, even a year later. The long hauler started after the vaccine. My body went into some hyper immune response, they think. So again, no PCR to prove it. This year, I did a home test. Never thought that would backfire. Should have gone in for a Pcr I guess. All these free home tests, thought I’d use them!!
Gosh, I never thought I’d be back in this place either with my health I guess. So again, no PCR.

They called me back to say I could get an antibody test and wait 90 days and then call for an appointment. Meaning, I could spiral downward again like last year. Debilitating.

I know this sounds negative. I’m just losing hope. I’m very frustrated and it’s hard to feel this rotten. I can’t be the only healthcare worker that had COVID with a negative PCR. I can’t be the only person who experienced long haulers early on like this, after the vaccine. Again, a healthcare worker that was asked to get it in January 2021. I can’t be the only 43 year old working mom of 3, our family depends on both our incomes, to get COVID again and have to go through this. We are just getting back on our feet. Lost income from COVID related lay offs, lost income from my illness last year, medical bills etc. it’s just frustrating. I’m sure they have to have rules bc they are swamped at these clinics with unnecessary consults or something idk. Or maybe I don’t meet the criteria for the research studies? I don’t know. I get it I guess. They have to have rules. It just feels like there’s no hope in my neck of the woods. My providers don’t have anywhere to send me. I had to find the places. They are excited I’m finding them but never thought we’d hit road blocks like this I guess.

REPLY
@kellyhart

Thanks, I’ll check this all out. I have a few calls out but no success so far.
Mayo won’t take me.
April 2020 my PCR was negative and they diagnosed me from symptoms, even a year later. The long hauler started after the vaccine. My body went into some hyper immune response, they think. So again, no PCR to prove it. This year, I did a home test. Never thought that would backfire. Should have gone in for a Pcr I guess. All these free home tests, thought I’d use them!!
Gosh, I never thought I’d be back in this place either with my health I guess. So again, no PCR.

They called me back to say I could get an antibody test and wait 90 days and then call for an appointment. Meaning, I could spiral downward again like last year. Debilitating.

I know this sounds negative. I’m just losing hope. I’m very frustrated and it’s hard to feel this rotten. I can’t be the only healthcare worker that had COVID with a negative PCR. I can’t be the only person who experienced long haulers early on like this, after the vaccine. Again, a healthcare worker that was asked to get it in January 2021. I can’t be the only 43 year old working mom of 3, our family depends on both our incomes, to get COVID again and have to go through this. We are just getting back on our feet. Lost income from COVID related lay offs, lost income from my illness last year, medical bills etc. it’s just frustrating. I’m sure they have to have rules bc they are swamped at these clinics with unnecessary consults or something idk. Or maybe I don’t meet the criteria for the research studies? I don’t know. I get it I guess. They have to have rules. It just feels like there’s no hope in my neck of the woods. My providers don’t have anywhere to send me. I had to find the places. They are excited I’m finding them but never thought we’d hit road blocks like this I guess.

Jump to this post

I believe I have an answer for the reaction to the vaccine. Back on May 10th, I caught the Covid B variant. It was my 4th case since April 2020. I’ve been warned not to get the vaccine because of a heart birth defect that could kill me from the reaction to it. Being the 4th case of it, I was going to take the chance and get the vaccine but after many hours of research, I learned the answer to your question. This information I found in May explained how in some people, when they get the first dose of vaccine, the symptoms were mild. Then when they got the booster shot, the symptoms were much worse. Scientist wondered why too and here’s the explanation and your answer. When you get the initial shot, the virus in not recognized by your immune system and begins to make antibodies. Then when you get the second shot, your antibodies do recognize it and go after it with a vengeance and the symptoms could be drastic. I became a long hauler after my 3rd case of Covid in March. I lost my taste and smell and feel exhausted all the time. I have a nonexistent immune system since birth but it must have made some antibodies because my 4th case was a Covid B variant and didn’t recognize it, so I got sick again May 10th and still feeling the effects. I hope this information helps to give you a reason why you feel like me without no vaccine shot.

REPLY

You say decline started around March of 21 which would have been after the vaccine.. Your time line is very much like mine. I had covid March 2020 but started having "issues" maybe 3 weeks after getting vaccinated in Feb 2021. I use the vaccine date as reference only because i serves to provide a timeline and so many of my symptoms, numbness/tingling, ears ringing, what feels like inflammation of bronchial passages and in my jaw. are so similar to long covid. I mean they are unique and all tests came up negative but stared to occur over a yr. after having covid and not immediately after getting vaccinated. Then I had an episode where I saw flashes of light and half of the room went dark. It was no my eyes and I was checked for stroke and nothing. It's just that the symptoms are so different and all tests negative. Think covid can exacerbate or activate other issues. Given you had issues before covid, I'd try to work with a specialist/doc that can work with you while you go through a long covid clinic. Good luck.

REPLY
@kellyhart

Thanks, I’ll check this all out. I have a few calls out but no success so far.
Mayo won’t take me.
April 2020 my PCR was negative and they diagnosed me from symptoms, even a year later. The long hauler started after the vaccine. My body went into some hyper immune response, they think. So again, no PCR to prove it. This year, I did a home test. Never thought that would backfire. Should have gone in for a Pcr I guess. All these free home tests, thought I’d use them!!
Gosh, I never thought I’d be back in this place either with my health I guess. So again, no PCR.

They called me back to say I could get an antibody test and wait 90 days and then call for an appointment. Meaning, I could spiral downward again like last year. Debilitating.

I know this sounds negative. I’m just losing hope. I’m very frustrated and it’s hard to feel this rotten. I can’t be the only healthcare worker that had COVID with a negative PCR. I can’t be the only person who experienced long haulers early on like this, after the vaccine. Again, a healthcare worker that was asked to get it in January 2021. I can’t be the only 43 year old working mom of 3, our family depends on both our incomes, to get COVID again and have to go through this. We are just getting back on our feet. Lost income from COVID related lay offs, lost income from my illness last year, medical bills etc. it’s just frustrating. I’m sure they have to have rules bc they are swamped at these clinics with unnecessary consults or something idk. Or maybe I don’t meet the criteria for the research studies? I don’t know. I get it I guess. They have to have rules. It just feels like there’s no hope in my neck of the woods. My providers don’t have anywhere to send me. I had to find the places. They are excited I’m finding them but never thought we’d hit road blocks like this I guess.

Jump to this post

Kelly, you are not the only one. You may appreciate connecting with @rinadbq @adelem in this discussion:
– Nurses/Frontline Workers who treated Covid patients https://connect.mayoclinic.org/discussion/nursesfrontline-workers-who-treated-covid-patients/

REPLY
@becky1024

I believe I have an answer for the reaction to the vaccine. Back on May 10th, I caught the Covid B variant. It was my 4th case since April 2020. I’ve been warned not to get the vaccine because of a heart birth defect that could kill me from the reaction to it. Being the 4th case of it, I was going to take the chance and get the vaccine but after many hours of research, I learned the answer to your question. This information I found in May explained how in some people, when they get the first dose of vaccine, the symptoms were mild. Then when they got the booster shot, the symptoms were much worse. Scientist wondered why too and here’s the explanation and your answer. When you get the initial shot, the virus in not recognized by your immune system and begins to make antibodies. Then when you get the second shot, your antibodies do recognize it and go after it with a vengeance and the symptoms could be drastic. I became a long hauler after my 3rd case of Covid in March. I lost my taste and smell and feel exhausted all the time. I have a nonexistent immune system since birth but it must have made some antibodies because my 4th case was a Covid B variant and didn’t recognize it, so I got sick again May 10th and still feeling the effects. I hope this information helps to give you a reason why you feel like me without no vaccine shot.

Jump to this post

Thanks for your response. I don’t think I’m following you though. I did have the vaccine. Between COVID cases. They were all pretty much a year apart. Are you suggesting I have an underlying cardiac issue? I’m not sure why no cardiac tests have been ordered yet.

REPLY
@bunzman

You say decline started around March of 21 which would have been after the vaccine.. Your time line is very much like mine. I had covid March 2020 but started having "issues" maybe 3 weeks after getting vaccinated in Feb 2021. I use the vaccine date as reference only because i serves to provide a timeline and so many of my symptoms, numbness/tingling, ears ringing, what feels like inflammation of bronchial passages and in my jaw. are so similar to long covid. I mean they are unique and all tests came up negative but stared to occur over a yr. after having covid and not immediately after getting vaccinated. Then I had an episode where I saw flashes of light and half of the room went dark. It was no my eyes and I was checked for stroke and nothing. It's just that the symptoms are so different and all tests negative. Think covid can exacerbate or activate other issues. Given you had issues before covid, I'd try to work with a specialist/doc that can work with you while you go through a long covid clinic. Good luck.

Jump to this post

Thank you!

REPLY
@kellyhart

Thanks for your response. I don’t think I’m following you though. I did have the vaccine. Between COVID cases. They were all pretty much a year apart. Are you suggesting I have an underlying cardiac issue? I’m not sure why no cardiac tests have been ordered yet.

Jump to this post

I have several questions. Before the vaccine shot, did you have a positive test that you say you had unusual symptoms? If so, your body would have made antibodies for that virus strain. If you didn’t have a positive test, how do you actually know you had Covid? Antibodies for Covid lose affective results after about six months, that’s why you need the booster shot so your immune system can make more affective antibodies. Following so far? By the time you got the vaccine, you probably didn’t have antibodies for the virus strain you may have had before, so your body had to start the process of making new antibodies to the strain that the vaccine had. I got caught with 3 different strains of Covid between April 2020 and May 2022. The antibodies my body made for the 2020 Covid, had disappeared, so that in December of 2021, I got exposed to a different strain and my body started making new ones. By March of 2022, I got exposed to Covid again and the antibodies from the December case went after the new Covid virus which had to be the same strain as the December case. The antibodies went after the Virus with a vengeance, causing the lose of taste 25 days after exposure and 6 days after that, I lost my smell for a total of 31 days after exposure. I got caught with the 4th case of Covid May 10th but this was a new B variant, which I wouldn’t have antibodies to protect me but the ones I did have made this case mild.

As for my heart problems, the vaccine side affects I was checking for, it stated it could cause a fast heartbeat known as tachycardia which I’m affected by because of a heart birth defect. So unless you have trouble with tachycardia, I doubt you need to worry about the vaccine bothering your heart. That’s why I’ve been warned not to get the vaccine, it could cause me to have a fatal heart attack, most likely in my sleep when I couldn’t get help. Any more questions?

REPLY

Thank you. My tongue still feels like I burnt it on hot coffee. That was my first symptom when getting sick April 2020. And all my other symptoms they documented. Somehow my provider said the Moderna is 10x stronger than Pfizer? They think since I most likely had the first strain of COVID (strong) then the moderna, it was too much on my body.

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