Anyone have symptoms of longhaul COVID, but didn't have infection?

I got the first Covid vaccine in March. In the following two months, my heartbeat raced & shortness of breath when standing up. I sat on bed for two months. Since April, the airflow out of the nose is decreasing.

I have gone through extensive follow-up appoints with cardiologist, pulmonologists, and neurologists. Tests such as chest x-ray, lung CT, PFT, EKG, Echo and EMG have been done. It has ruled out heart disease lung disease and neuromuscular disorders. However, the pulmonary function test do show abnormal high RV (residual air in the lung after forceful exhalation) and abnormal MIP/MEP (maximal inhale/exhale pressure). The pulmonologist thought it is related to weak muscles that cannot expel the air out of lung. However, the neuromuscular specialist ruled out that. My breathing issues now became a mystery to the doctors now. It is very terrible that I feel like no breathing due to poor airflow. I often feel numbness in the hands and legs now. My average blood oxygen level is 94%.

I do believe the vaccine can cause unexpected effects on the brain. It is out of the experience of the doctors. I am anxious and living in fear in the past eight 8 months. I am uncertain which direction the breathing issues will bring me to.

I am presuming an initial asymptomatic acute COVID infection because literally overnight, from 9/10/2020 to 9/11/2020, I went from trim, healthy and active with no comorbidities, taking no prescription medications, walking 3-7 miles per day, to suffering shortness of breath; dizziness; chest pain/pressure; brainfog; fatigue; heart racing/palpitations/rate spikes and dips (up to 200bpm/down to mid-40bpm) with little to no exertion – many times while sitting, with nausea, full body flushes preceding these “episodes”; headaches; ribcage soreness, visual changes… overnight. My entire bag-o-symptoms are not always present together nor to the worst degree, but have been always everyday in some combination to varying degrees of severity since onset 9/11/2020. With any level of activity I risk a “crash” involving increase of severity of any or all symptoms lasting sometimes for days.

[After 2 NEGATIVE PCR tests, and 1 NEGATIVE Antibody test, I finally got a POSITIVE T-Detect t-cell test 8/30/2021. I couldn’t imagine it being anything but Long COVID, but after almost a year of this it was nice to get validation…]

I also have had the battery of diagnostic testing. With the exception of a Tilt Table Test resulting in a diagnosis of Postural Orthostatic Hypotension, all have come back within NORMAL range … blood tests, chest x-rays, ECHO, Cardiac Stress Test, Pulmonary Function Test, Chest CT. Scan.

T-cells have the longest “memory” over antibodies, so you have a greater chance of getting a positive test result with this where the window is very limited with a PCR or Antibody test. I got my t-cell POSITIVE almost a year after symptom onset. Since I’m presuming an initial asymptomatic acute COVID case, I have no idea how much time had lapsed since my COVID infection.

Link to T-Detect website to order t-cell test:
https://www.t-detect.com/

I hope you get some answers and good guidance to get you on the road to a swift and complete recovery.

My husband has had similar experience with the vaccines and booster. All have increased the severity of these symptoms and also led to speech degradation (difficulty in word finding, effortful speech, stutters and stammers) as well as increased suicidal ideation along with the litany of regular covid issues (SOB/coughing/lung issues, brain fog/decreased mental acuity, enhanced irritability and at times nearly zero bandwidth to deal with chaos, fatigue, insomnia, noise intolerance, cold intolerance, etc. The medical community largely does not agree that what he is dealing with is related to covid or the vaccines and he has been through testing of all major systems - which have ruled out any identifiable issues/disease. It is VERY frustrating - we continue to seek medical providers that will attempt to address this as a systemic issue and continue to search all current scientific/medical research. This has been ongoing for about a year at this point with last spring/summer/fall being the lowest times of our lives due to daily symptoms and no answers.
Collectively, I am very hopeful that we can educate the medical establishment and find treatments. Sending you our best, Ellen and Ric

Thank you for that information! I will look that up. My neurological symptoms are starting to clear up. But i will try to get the t-cells tested in an attempt to figure it out. Thanks again

What a scary battle! Has it improved at all?
It sounds like nothing is out of the realm of possibilities. As with what I’ve had, it’s not anywhere near those symptoms. But it has strictly been the neurological things. I haven’t at all felt sick in any other way. Just one day I started getting eye flashes, and gradually began feeling light headed and spacey and foggy. In the same couple of months experienced quite a bit of heart burn as well, which is highly unusual for me, I’m 35 and healthy.
Thank you for your input, and I hope it all improved with you.

Thank you for your concern!

I think most of Long COVID is proving to be “highly unusual” and thus the medical conundrum to everyone, from medical experts to patients, trying to find solutions.

Though I continue to have all of the same symptoms I feel their extremes have been SLOWLY diminishing in fits and starts. IE: Over the last month or so the range of my daily heart rate fluctuations has decreased to between 50’s and 130’s from the 40’s and 200+‘s I had been regularly experiencing.

Brain fog remains very prominent affecting my professional ability to properly manage our business. Errors and omissions has literally cost us $1000’s. I never know day to day what mess I’ll discover I’ve made when I’ve felt, in the moment, I had been very conscientious in my work. I have always considered myself to be extremely detail minded and hold myself to very high standards in my work. Now I cannot rely on my (dis)abilities, though I continue to adjust and compensate.

Regardless, while self-educating and pursuing medical help, being determined to live in the now to the fullest within the limits of everyday has become my game plan. Thanks be to God, my Rock and Salvation, who is ever-present with me carrying me, comforting and calming my mind and soul while my body continues to suffer through this season of dis-ease. I can honestly say I have not experienced a moment of fear throughout this ordeal. (Frustration? Concern? Confusion? Yes, absolutely!!) But, the Lord’s faithfulness and love has been made manifest through the many hearts of those who care and pray for me. That, in my most humble opinion, has been the best medicine for me. This, too, shall (eventually) pass, but God’s love is eternal.

Blessings on your journey of recovery.

I was just made aware of this study that may be of interest for people who suspect they may have had a COVID infection.

- COVID-19 Antibody Detection Study https://joinastudy.niehs.nih.gov/studies/antibody-detection/index.htm

“ This year-long study will test adult volunteers for antibodies in their blood that indicate exposure to SARS-CoV-2, the virus that causes COVID-19. Researchers hope to learn more about disease symptoms and how many antibodies stay in a person’s blood over the course of a year. This information will help inform public health efforts in the future.”

The COVID-19 Antibody Detection Study sounds great, if you live around North Carolina!

I've had these kind of breathing issues for a few years now and I didn't have covid or get any of the shots. for the past month or so I feel like I can hear my heartbeat in my head. I get short of breath just moving around the house. I'm back on Cpap but I still take Sunosi 37.5mg to keep me from napping and to I have energy to do stuff than just sit. I have had many of the tests you've mention. it's a relief to just know I'm not the only one! so thanks for sharing. I can sit at the drs office or my chair and watch my 02 sats go down to 86% and then I seem to take a deep breath.