2+-months with C19-like symptoms & recent relapse

Posted by solterra @solterra, May 3 6:10pm

Hi – I’m joining and sharing to learn from this forum & share my story.

I experienced mild cold symptoms the last week of Feb after international travel on the last day Australia accepted flights from China. On Mar 1 I grew quite ill from c-19-like symptoms: fever, cough, extreme fatigue & shortness of breath. My doctor refused to accept it could be Covid. BC government guidelines made me ineligible for testing. In spite of persistent & worsening symptoms (& weekly dr visits) I was only tested 1 Month after first symptoms. Not surprisingly, it was negative (false negatives after 21 days are over 70% according to one study I read). I never fully lost my sense of taste / smell but experienced 2 weeks where food was bland & I didn’t want to eat. My blood work & X-rays have been clear except for initial high D-dimer. They won’t give me a CT scan.

I started to develop heart issues Week 3 and have since been diagnosed with Pericarditis (via ECG & Echo Doppler). Symptoms of fatigue, Chest pain, lung burn and erratic HR with mild exercise continued every day … but slowly improved until week 8. It remains painful to lie flat & I continue to need to sleep on pillows.

Last week I experienced a significant relapse. Fatigue became crushing. The tightness in my chest & lung burn grew worse than ever. My Heart hurts with any minor walking. My cough has returned and I get a fever if I am up doing light house chores for a half hour (up to 100.5 but frequently only 99.3-99.5). It quickly drops with rest. I’m finding it very difficult to sit up (much less stand) for any period of time & am at more peace when semi-reclined.

I feel like I am actively fighting something! My doctors leading theory is that I em experiencing post viral fatigue and pericarditis second to EBV (similar time mono). They refuse to believe this could have been Covid, much less that I could still be fighting it.

I am scared and demoralized, in spite of actively cultivating all my calming, meditative and healing abilities. I should not that I used to climb mountains and be an athlete (44 years old) but can now scarcely climb a flight of stairs & must rest 3 times midway.

Has anybody experienced similar timescales? Any advice on what to ask my Dr? I’m supposed to see a specialist via tele-health this week.

Liked by migizii, zep

@solterra – fwiw, I believe you. This disease is baffling and slippery, and I don't blame doctors who are fooled by it. But I believe sometimes the patient's insight into his or her own body can be more telling than tests, especially when they are administered way too late. Best of luck to you.

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@solterra Welcome to connect we aren't Dr's. but try to help if we can . We are a caring bunch . I would like to ask you have you seen a pulmonologist . or just your own Dr? I would keep pursuing this Your symptoms tell me you should see a specialist in the lung area . Next would be a cardiologist . As zep said out bodies can tell us more then Dr.s may know about and this Covid -19 is so new you probably should see the specialist . Good luck and please let us know how you are doing . We will listen .

Liked by zep

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Hi @solterra, I appreciate your sharing your journey with presumed COVID-19. So little know about this virus and how it affects us. Many people report extended fatigue. It must be frustrating that you can't get antibody testing (yet) to confirm or rule out COVID-19 and that your doctors are reluctant to diagnose it as COVID.

As you prepare for your tele-health visit this, I'm bringing in fellow members @mkqq @susanbo2457 @sueinmn @mkqq @ccbelle @wishercristy @potterylady and @amart22018. They or a family member have/hs also had COVID-19 confirmed or presumed. They may have experiences or tele-health tips to share. You may also appreciate this discussion:
– Telemedicine: How to make the most of a virtual doctor visit https://connect.mayoclinic.org/discussion/covid-19-telemedicine-its-a-brave-new-world/

Solterra, have you had Epstein-Barr virus (EBV) in the past? Did you doctor say why EBV is suspected over COVID?

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@solterra Hello & welcome. So sorry you are struggling with this. My daughter, presumed Covid-19, has had 2 relapses. One at 14-15 days, and another at about 30 days. Her symptoms were not as severe as you report, but she still is experiencing frequent fatigue at nearly 8 weeks. Her pulmonologist attributes it to a compromised immune system (she is on immunosuppressant therapy for severe asthma.) It is frustrating for her, as she is an active athletic person who normally works full-time, volunteers, and goes to school online, and now she needs to conserve her energy carefully to get through the day. She has not been allowed back to her job as an ER nurse until it is known that the antibodies confer at least temporary immunity.
I hope you get some answers from your appointment.
Sue

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@sueinmn So sorry to hear your daughter is sick from the covid-19 Should she go back to the E. R. and risk it again . Im sure she wants to but is this the wisest thing for her to do? I hope she is taking is one day at a time .

Liked by zep

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@sueinmn

@solterra Hello & welcome. So sorry you are struggling with this. My daughter, presumed Covid-19, has had 2 relapses. One at 14-15 days, and another at about 30 days. Her symptoms were not as severe as you report, but she still is experiencing frequent fatigue at nearly 8 weeks. Her pulmonologist attributes it to a compromised immune system (she is on immunosuppressant therapy for severe asthma.) It is frustrating for her, as she is an active athletic person who normally works full-time, volunteers, and goes to school online, and now she needs to conserve her energy carefully to get through the day. She has not been allowed back to her job as an ER nurse until it is known that the antibodies confer at least temporary immunity.
I hope you get some answers from your appointment.
Sue

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@sueinmn – Best of luck to your brave, compassionate daughter the ER nurse, and a thorough, speedy recovery.

Liked by lioness

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I don't understand why your Doctor won't retest for covid 19. What state do you live in? My state is doing testing. You have to go to a drive through facility and submit to an exam. Then generally they test you for covid 19. I am very worried for you. Please be more proactive. I have been hearing about a vaccination that may help you. Ask your doctor for that and everything else you deserve to be treated better.

I have had many similar symptoms as yours. Although not the severity. Mine started with what I thought were allergic rhinitis. Until I experienced chilling cold through my whole body. And pain. That was April 24. I was feverish with temperature reaching 100. Very high for me. By 4/27, I was having significant shortness of breath and pain in my lungs. I had a TeleHealth chat with my Doctor. She told me to self quarantine for 14 days. And prescribed an antibiotic.
Backing up a little, I was working outside on 4/8 and was stabbed in the eye by a little branch. It scratched the right cornea and was painful. I was seen by urgent care. Given eye ointment antibiotic. All vitals were good. I subsequently lost my sense of smell for almost a week. At the time I thought that was weird. Now I know that is a sign of covid 19.
I have had no known contact with anyone that may have infected me.
I had a covid 19 test on 4/29. The results were Negative. I was told to continue to self quarantine. I am feeling somewhat better. Although my Doctor said I may have had a negative because the worst was past. So now I will follow up .
I hope you will come back to good health.

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I'm on a similar timescale maybe 1 week or so longer. It started with a fever that lasted 3 days and then I had a wet cough with green/yellow phlegm for a few days, later followed by cough with white phlegm.

Doctor thinks it might have been Covid-19, but can't be certain as the infection was already gone.

Biggest problem is that I've having trouble sleeping for the last 8 weeks. Initially for some nights I couldn't sleep at all, and now I manage anywhere around 4-7 hours a night on average. The sleep is not very good quality and very interrupted.

I also have what I think is post viral fatigue. It doesn't take a lot for me to start feeling tired. I feel it's improving at a very slow pace but nowhere near fast enough. The lack of sleep isn't helping.

These days I noticed that upon exertion of energy I can get a slight sore throat, or a runny nose, or a sneeze or two.

I'm in a state of panic as I read that people can take up to many months or even a year to fully recover from post viral fatigue!

I can manage my daily activities and maybe even go to work around 3 days a week, but as soon as I exercise too much I feel the effect the next 2-3 days.

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Have you considered a COVID antibody test. You can order one online through Quest Labs, no doctor needed. You have to be free of fever or current COVID symptoms, but in your case with the possibility you are having a flare of latent virus (?) which apparently is characteristic of EBV, but no one knows about COVID, you could still get the test so long as you do not have current fever.

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@solterra. I read so much anxiety in your words. I hope your virtual visit with your physician can alleviate that for you. You have enough going on physically that you don’t need mental anxiety heaped on top of everything else. Reducing stress is so vital to achieving and maintaining good health and reducing susceptibility to illness. I had a much different path with my physician than you. I had mono (caused by EBV) many years ago in college. I am now suffering from a “suspected Covid-19” infection. Starting April 11th i had 3 afternoons of diarrhea. Weird, but I wasn’t too concerned. That cleared on the 14th to be replaced by fever and I couldn’t get a deep breath. I had awful headache and sinus pain and pressure in nasal area. I have asthma that is well controlled by an inhaled corticosteroid. I always have a rescue inhaler nearby but rarely use it. By the 17th my breathing had worsened substantially. I was completely dependent on the rescue inhaler….Anxiety rising rapidly, I called my doctor’s office, made a virtual appointment for Monday the 20th, was connected to a triage nurse who thought I had sinus infection with asthma flare, was told where I should get tested for the virus, did that at urgent care, and was sent to hospital for chest X-ray. I had the virtual visit with my doctor who said “you are clinical for Covid-19.” We talked about 15-20 minutes. She told me that Diarrhea is a very typical first presenting symptom, that days 5-9 appear to be the worst, that I was on day 9, and she all but guaranteed that my test would come back negative. They are finding out that the viral load is highest at symptom onset. I was tested on day 7. She said by then the virus would have already moved down into the lungs for me (for young patients into the GI tract). I was first tested via nasalpharygeal swab then again on the 29th at a respiratory clinic with the throat swab. Both were negative. I had to climb a flight of stairs for that appointment, and I have never been so winded. I ran 20 marathons in my 30s and 40s. They were nothing compared to that effort. The fatigue is debilitating. The fatigue with mono is very similar, that and the fever. My mono experience was very different otherwise. My neck glands were so swollen that they pressed on my ear drums and vocal cords. I had horrible ear aches and my voice was super high pitched. I also had a swollen spleen that I had to take care not to have a fall for months for fear of rupture. Prednisone was like a miracle for me with mono that Spring, but the fatigue lasted well into the summer. With Covid-19, I am in my 4th week and still have daily waves of fever and shortness of breath. The nasal/head symptoms are gradually abating consistent with the virus’s movement south. Your pericarditis and “lung burn” sound very unpleasant for you. How are they treating that? I hope to hear of some near term improvement in your symptoms and send healing thoughts to you.

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I am sorry to hear that so many are experiencing prolonged symptoms and/or apparent relapses. This is just one more thing scientists are learning about the Covid-19 virus. As for negative virus tests, it seems to they are also learning there is a "sweet spot" for the virus showing up in nasal and/or throat swabs – somewhere soon after symptoms appear, but disappearing after a week to 10 days of illness. Both of these may be related to another thing being learned – this virus seems capable of attacking many different organs, not just the respiratory system like influenza. Probably in the future we will see additional diagnostic tests developed after the virus is better understood.
We are seeing a lot of publicity about Covid-19 testing here and in the media. Dr Poland did a great Podcast about it back in April, you can see it here: https://connect.mayoclinic.org/page/podcasts/newsfeed-post/mayo-clinic-laboratories-launches-serology-testing/
In addition, there is much information about how the 100+ antibody tests have been brought to market without any of the typical validation testing, and it is becoming apparent that many are not accurate. Do not let the words "FDA Approved" sway you – the FDA granted emergency rapid approval without independent validation of tests to many applicants. As of yesterday, companies are now being asked to submit data within 10 days showing how their tests were validated, but it still does not look like the FDA will be doing the actual validation work. Here is information about how the emergency authorization works: https://www.cdc.gov/coronavirus/2019-ncov/lab/serology-testing.html
If you want to be tested for Covid-19 antibodies at this point, it would be best to contact your physician or clinic for referral to a facility using one of the (few) independently validated tests.
Sue

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@ccbelle

@solterra. I read so much anxiety in your words. I hope your virtual visit with your physician can alleviate that for you. You have enough going on physically that you don’t need mental anxiety heaped on top of everything else. Reducing stress is so vital to achieving and maintaining good health and reducing susceptibility to illness. I had a much different path with my physician than you. I had mono (caused by EBV) many years ago in college. I am now suffering from a “suspected Covid-19” infection. Starting April 11th i had 3 afternoons of diarrhea. Weird, but I wasn’t too concerned. That cleared on the 14th to be replaced by fever and I couldn’t get a deep breath. I had awful headache and sinus pain and pressure in nasal area. I have asthma that is well controlled by an inhaled corticosteroid. I always have a rescue inhaler nearby but rarely use it. By the 17th my breathing had worsened substantially. I was completely dependent on the rescue inhaler….Anxiety rising rapidly, I called my doctor’s office, made a virtual appointment for Monday the 20th, was connected to a triage nurse who thought I had sinus infection with asthma flare, was told where I should get tested for the virus, did that at urgent care, and was sent to hospital for chest X-ray. I had the virtual visit with my doctor who said “you are clinical for Covid-19.” We talked about 15-20 minutes. She told me that Diarrhea is a very typical first presenting symptom, that days 5-9 appear to be the worst, that I was on day 9, and she all but guaranteed that my test would come back negative. They are finding out that the viral load is highest at symptom onset. I was tested on day 7. She said by then the virus would have already moved down into the lungs for me (for young patients into the GI tract). I was first tested via nasalpharygeal swab then again on the 29th at a respiratory clinic with the throat swab. Both were negative. I had to climb a flight of stairs for that appointment, and I have never been so winded. I ran 20 marathons in my 30s and 40s. They were nothing compared to that effort. The fatigue is debilitating. The fatigue with mono is very similar, that and the fever. My mono experience was very different otherwise. My neck glands were so swollen that they pressed on my ear drums and vocal cords. I had horrible ear aches and my voice was super high pitched. I also had a swollen spleen that I had to take care not to have a fall for months for fear of rupture. Prednisone was like a miracle for me with mono that Spring, but the fatigue lasted well into the summer. With Covid-19, I am in my 4th week and still have daily waves of fever and shortness of breath. The nasal/head symptoms are gradually abating consistent with the virus’s movement south. Your pericarditis and “lung burn” sound very unpleasant for you. How are they treating that? I hope to hear of some near term improvement in your symptoms and send healing thoughts to you.

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Wow it sounds like some people really got hit hard. I am somewhat depressed about my current situation but I also have to remember that many others are much worse off.

How is your fatigue now? Also are you having any trouble sleeping? This is one of my biggest issues now into the 9th week.

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@mkqq

Wow it sounds like some people really got hit hard. I am somewhat depressed about my current situation but I also have to remember that many others are much worse off.

How is your fatigue now? Also are you having any trouble sleeping? This is one of my biggest issues now into the 9th week.

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I’m able to shuffle around the house and yard very slowly. Springtime is a huge plus. Watching the daily changes in the garden/yard keep my mental state in check. I can wipe down surfaces and do light cleaning, but i am nowhere near being able to use a vacuum or liftIng anything heavy. The fatigue and malaise continue. I don’t have any problems with sleeping, unless i wake up in the wee hours. I have a hard time falling back asleep because my brain engages, and the subject is usually the mechanics of breathing. Do you have problems falling asleep or staying asleep?

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@ccbelle

I’m able to shuffle around the house and yard very slowly. Springtime is a huge plus. Watching the daily changes in the garden/yard keep my mental state in check. I can wipe down surfaces and do light cleaning, but i am nowhere near being able to use a vacuum or liftIng anything heavy. The fatigue and malaise continue. I don’t have any problems with sleeping, unless i wake up in the wee hours. I have a hard time falling back asleep because my brain engages, and the subject is usually the mechanics of breathing. Do you have problems falling asleep or staying asleep?

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These days probably more staying asleep. After I fall asleep I almost always wake up after 1-2 hours and sometimes struggle to fall asleep again. Yesterday I was really stressed out at the prospect of long recovery and only managed around 3 hrs of sleep. I actually feel worse this week compared to past week.

Last week I did a bit too much I think. Had a 4 day weekend and I did a 3km jog twice, a long 25km bike ride (relaxed pace), and some other stuff. Now I have to pace myself, i.e. don't use all the energy I feel I have.

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Using aromatherapy to fall back asleep has helped me a lot . Maybe you could try an essential oil , such as lavender. I also concentrate on my breathing. When I am anxious I pray. I have started to include all peoples of the globe in my prayers. I hope one of these suggestions might help you.

Liked by lioness

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