As the coronavirus pandemic rolls on, an unknown number of seemingly recovered patients are experiencing what is being called post-Covid syndrome — weeks or months of profound fatigue, fevers, problems with concentration and memory, dizzy spells, hair loss, and many other troubling symptoms. Among these “long-haulers,” as they have become known, a significant number face a very specific challenge: convincing others they had Covid-19 in the first place.
Because of widespread supply shortages and overwhelmed medical providers, many who sought viral testing in the first months of the pandemic were refused for not meeting strict criteria. Others decided on their own to self-quarantine. Some, like wildlife veterinarian Emily Talkington, received negative results from local testing sites despite clinical signs of the disease.
In late March, Talkington came down with what she assumed was Covid-19 and decided she could weather it out at home. Four weeks and two negative coronavirus tests later, she was still suffering from exhaustion, burning joint pain, tachycardia, and other symptoms.
Talkington, who lives near Santa Cruz, Calif., did not trust the negative results. She knew the tests could be unreliable if administered too long after the initial infection. In late April, she sought treatment at a temporary urgent care center after coughing up blood and almost collapsing from weakness.
A physician assistant dismissed her concerns once he learned she had tested negative for coronavirus and was not having breathing difficulties, recalled Talkington. He refused to refer her to a cardiologist for her racing heartbeat, gave her pamphlets on anxiety and perimenopause, and advised her to ignore social media posts about post-Covid syndrome, she said.
“He said, what you’re reading is giving you ideas,” said Talkington. “He also said it could be my hormones. I was mortified and humiliated. He didn’t believe me. It was awful.”
Finally, after contacting a Stanford Blood Center program seeking donations of plasma from recovered patients, Talkington took an antibody test — and it was positive, indicating that she had previously been infected with the coronavirus. “It was very emotional to finally have validation, I sat down and cried for an hour,” said Talkington. The positive antibody test also cleared the way for her to get a cardiology referral, she said.
Talkington’s dilemma is being replicated all across the country. Although tests for antibodies — which show evidence of an immune response to the infection after the fact — are now widely available, they are known to be of varying accuracy. Negative antibody tests, like negative viral tests, are not considered conclusive.
Some people who believe they had Covid-19 might instead have had a cold or the flu or some other illness, but even patients who had positive tests showing they had active coronavirus infections report skepticism from doctors about their chronic symptoms. Those without such laboratory confirmation can face much greater obstacles, said Daniel Griffin, chief of infectious diseases at ProHealth Care, a medical system with multiple facilities in and near New York City. These patients routinely report difficulty finding a doctor who takes their complaints seriously, he said.
“By the time they reach me, they’ve been told their story is not believable,” said Griffin. “They might have lost half their hair and can’t go up a flight of stairs, but if they don’t have proof of Covid, a lot of providers don’t want to deal with them or will refer them to a psychiatrist.”
Given the situation in the early months, said Griffin, patients who did not require hospitalization were often clinically diagnosed based on reported symptoms and exposures to known or possible cases. It was not clear at the time how important it would be to have that viral test documentation later on, he said.
In May, a patient-led research team associated with the Body Politic Covid-19 online support group released a survey of 640 people experiencing lingering symptoms. Only 23% had received a positive coronavirus test, almost half had not been tested at all, and 28% had tested negative.
It is too early to know how many people will ultimately have post-Covid symptoms that last for longer than a few months, whether or not they have evidence of infection. But this much is clear: Many or most people who were infected haven’t been tested. The Centers for Disease Control and Prevention recently estimated that 30 million to 60 million Americans have likely already been infected with the coronavirus, compared to the 5.7 million that have tested positive. Patients with mild as well as severe cases of Covid-19 have experienced these persistent complaints.
Anthony Komaroff, a professor of medicine at Harvard Medical School and a clinical epidemiologist, cites the country’s bungled pandemic response as a major reason why so many people without a positive viral test could have post-Covid syndrome. “I see it as part of the much larger problem of totally inadequate testing for Covid,” he said.
Early misconceptions about the disease also played a role. Komaroff said many doctors, himself included, assumed every Covid-19 patient would experience fever and pulmonary symptoms. As a result, he said, patients with mainly neurological symptoms and other atypical presentations were not thought to have the illness and were not generally tested.
Tasha Crabtree, a veterinary technician in Las Vegas, had a bout of diarrhea, a mild sore throat, and an intermittent cough in mid-March. She didn’t think much of it or associate it with Covid-19 until she woke up a week later gasping for breath. By the time she was able to obtain a viral test, it was almost a month after her initial symptoms — and it was negative. An antibody test was also negative.
Crabtree has continued to experience frequent heart-pounding, intense sweating, and other symptoms. Although she is “200% sure” she had Covid-19, she acknowledged harboring a bit of “positive-test envy” toward fellow patients. Not having that proof of viral infection to offer skeptical clinicians takes an emotional toll, she said.
“You’re made to feel like you’re crazy,” she said. “You start to think, you know what? Maybe I am crazy, am I making this up?”
Mady Hornig, a Columbia University epidemiologist and psychiatrist who is herself pursuing research into post-Covid phenomena, had a cough, almost two weeks of fever, and other symptoms in April. Four months later, she can work for only a few hours a day, not 10 or 12 as in the past, and is frequently short of breath.
Because she had negative viral and antibody tests, some of her own longtime health care providers questioned whether she could have had Covid-19.
“If one of my doctors could suggest to me that this post-Covid tachycardia likely reflects some deep-seated unconscious neurosis, then how will anyone without a medical background manage to be properly heard and guided through this?” she said. After much discussion, she added, her clinicians have come around and now agree that coronavirus is the best explanation.
I also have had all these symptoms losing my hair we were tested at work I tested negative worked as a phlebotomist the months over the pandaminic.
There are other diseases that could be causing these symptoms. Why aren’t their doctors teSting for something else if the coronavirus tests come back negative. An elderly woman whose test came back negative ended up being diagnosed with Lyme disease. If her test had been positive would she ever have been diagnosed correctly?
If you’re lucky enough to find a doctor who won’t tell you it’s just anxiety, your doctor is likely testing for other potential root causes. Before I finally received a positive antibody result (which I am *deeply* grateful to have on record), I was tested for Lyme, thyroid issues, autoimmune diseases, and so on. None of those things are the underlying cause of my lingering symptoms. I was “treated for” bronchitis and pneumonia with treatments that didn’t ameliorate my symptoms.
I’m glad to hear that the elderly woman you mentioned found out about her Lyme disease, for sure. But for many of us, we are being tested for those things and they’re all negative. In my case, even CTs are showing nothing is “wrong,” but I still gasp for air and struggle to complete daily tasks due to shortness of breath. COVID’s a messy infection that is wreaking havoc on our bodies, but scientists don’t fully understand how the virus is attacking us. There are some working theories, but until there’s more clinical research, we’re navigating a healthcare system that doesn’t know how to treat us or provide therapeutic care and symptom management.
Part of the problem is you might not actually being seeing a doctor. With COVID, most real doctors (MDs) are getting replaced by midlevels: NPs, PAs. Heck, if you get surgery at the VA you won’t even have an anesthesiologist, you’ll have a CRNA! We as patients need to advocate for ourselves, if healthcare is a right, it’s also a right that we get the highest quality care. Not the cheapest and most incompetent for hire (nurses, assistants etc).
Depends on your health insurance and the willingness and ability of your doctor to fight with the insurance. I have to beg for testing. I almost never have been offered tests to rule things out. I was diagnosed with IBS in 2017 which is supposed to be a diagnosis after everything else is ruled out. I’ve never been tested for anything else! I had c.diff for 4 weeks straight after being refused covid testing the month before. It took 4 weeks sick with 20 times a day diarrhea to have a stool test ordered and it was positive for c.difficile. I’m only getting a colonoscopy next week for the first time in my life. I was taken by ambulance to the ER in January with profuse rectal bleeding and they gave me an x-ray and an enema and morphine and sent me home. I’ve had my gallbladder out and an emergency appendectomy over the years. I was diagnosed with anxiety. My doctor is convinced I had coronavirus in March. My insurance is refusing to pay for my antibody test which was negative. Health insurance is the problem. And I’m in a union so imagine how much worse insurance can be for others. And you have no way to know for sure if your doctor is not sending you for a test because they think it’s not warranted or if it’s because they don’t have time for the amount of notes and paperwork involved with getting the insurance to agree to it.
Post-viral syndromes, including weakness, fatigue and neurological symptoms are not new or restricted to Covid 19. When you have 60 million infections in 6 months you expect to see a lot of them. It’s possible that some of them are from other viruses, although that doesn’t invalidate the symptoms.
In the end of Oct.2019 I flew from from Spain to Israel via Fiume. In front of me sat a handsome Asian guy. 2 days later I got terrible headaches that wouldn’t disappear with pills. Then diarrhea .My throat started hurting and I got pimples in my face. I had 35.6C in temp. Sweating and cold at the same time. Then I got a weird bleeding wound on a toes that puzzled me because I could not remember having banged the foot into anything. When I cooked for my family the food tasted bland and no matter how strong I seasoned it or added salt it didn’t get better. Then on the 4th day after arriving I started getting breathless. No matter how deep a breath I took it was like no air came in. It was the same feeling as getting hightsickness in 4000 meter on a Nepalese mountain towards Tibet. I never forgot that feeling. A Sherpa carried me 200 meter downhill and fed me raw eggs.And I had to stay there for days until I could breathe again.
Now I had to rest after each step. And got terribly dizzy. You are just too fat my husband said, when I told him. I am not that fat size 42 in pants! It got worse could hardly talk had no air to finish a sentence .Somehow I managed to get to my doctor. It’s age he said but I will give you Statin since you cholesterol is high. NO thanks it eats braincells too, so I won’t take it. He gave me a lungscan and the result said something wrong on two places in the right lung. I had no cough or pain in the back. So he said come back in a week .And I will check you again. I did not come back was so tired from the diarrhea headaches and lack of air could hardly get to the bathroom without collapsing on the floor. I slept for 14 hours in rows, woke up by the whole bed being wet from sweat.My temp was 35.1 C. After a few days got a terrible pain in the lower leg .Managed alone to get to the emergency at 3 in the night. It’s a thrombosis but a small one not dangerous , go home they told me! I staid in bed for the whole month and to my big happiness it got better. I have no trouble with the stairs and can run again. After I got better the joint on my left hand started hurting. But I put leaves of cabbage and a hard bandage and after a week it stopped hurting.
I drank boiled water with salt sugar and lemon several times each day during the month with diarrhea. I never took any tests because there were no test to take before April. And nobody knew about Corona in November 2019 ! STAY HEALTHY!
What about those of us who had this crap in January. I was told I had an unknown viral infection and given ibprofen and told to buy mucunis DM
This reminds me of the way lyme’s disease patients were treated in the 1990s before much was known about the disease…get ready and get really strong “Covid long haulers” because you are going to have to not only fight the disease but some doctors and probably your own insurance company as well to get the care you need. I wish the best for all of you.
That’s exactly what I was thinking. My brother was one of those chronic Lyme disease folks and he had to travel 2 states away to get treatment since the docs in our town would not believe him. I am in the medical profession, and I get disgusted with colleagues who have the attitude that because something is “new” it doesn’t exist and is in the patients head (fibromyalgia, chronic fatigue syndrome, chronic Lyme disease, etc.)
We are still being treated this way today. Now, the Lyme Disease patient group are called a ‘cult’.
I had a sore throat that lasted 3 weeks. I still have such fatigue I can’t take a shower and do laundry on the same day. I have had terrible diarrhea but I have IBS so what else is new. My test was negative on day 5. Neg for strep too. It’s now been 4 weeks. I am having sweats intermittently but usually once a day. When I have these sweats, I have a low-grade temp but can be up to 101. I so rarely ever have a fever. Do I have covid? What else could this be?
But here’s the rub. We are told that auto-immune issues can make us more susceptible and we should stay home. We are told we can get more ill if we get it with a pre-existing auto-immune issue. WE ARE NOT told that if you get COVID, your auto-immune issue can get worse!
I have CRPS/RSD which is an intense chronic pain auto-immune disorder. It is week 4 and I am having a flareup in pain the likes of which I have not had in 20 years. In fact, never. My toes feel like they are on fire and so itchy I want to break them off. I don’t have what looks like covid toes. They look fine. My chronic pain is in my feet not my toes but I haven’t slept in 2 days I am in so much pain. I’ve spoken to one other person who has RSD and Covid and is experiencing the same out of control pain. Is anyone studying this? RA? Fibro? With RSD, the cytokine level in your blood is always elevated because of constant inflammation. I know covid can cause a “cytokine storm.”
But I tested negative. It was the quick nasal swab with lots of false negatives. My doc told me to quarantine because she believed I had it. it’s now 4 weeks. I have barely opened my door in that time except to get the mail twice. I live alone. I’ve been all alone since March. And it’s just so weird. There is so much fear of getting it and so much fear of dying – but if you have it in the middle somewhere, you are totally on your own and forgotten.
I was tested again today – the deeper nasopharyngeal swab. We’ll see. But what else could be causing the symptoms I have? a sore throat for 3 weeks. 4 weeks of sweats and fevers? and a massive amount of pain I didn’t have before. The woman in this article says she has had burning joints. So validating. Thank you for this article. I needed to hear this. It is so hard to validate yourself.
Not to mention the shame of catching it! “What did you do?” Why did you let yourself get it. Why didn’t you wear a mask (I did. all the time. left my house 6 times since March. clothes right in the washer when I got home. my body right in the shower.) There is a sense of “I did this to myself.” “How did I let this happen to me.” it’s a very hard place in the middle. And do I even have it. What else could it be? If it’s not covid then I’m really sick but medically right now, to a hammer, everything looks like a nail.
I so hope the test I did today comes back positive. I can’t believe I’m even saying that compared to my fear of 6 weeks ago. I don’t want to be a long-hauler. I wasn’t even that sick. Never had a cough or lost my sense of smell. Never a temp of 103 or chills.
I didn’t even think about the implications of lack of care in the future because I have no “proof” I had it. What a mess. Thanks for this article!!
And no, writing about this is not malpractice. it’s validating for those of us who are right here. right now. and lost.
1) What’s your 25hydroxydtest number?
2) Since you have autoimmune disease, have you ever taken hydroxychloroquine for it?
3) Are you taking any antioxidants like NAC?
I’m so sorry for you! That sounds just awful. Hang in there and don’t lose hope. I wish you and all who are suffering through this get some much needed comfort and assistance, as well as a return to wellness and some sense of normalcy!
We live in a microbial stew. It’s not like the 1000s of other microbes stopped infecting or reinfecting people because of SARS2. These patients’ wide variety of symptoms are real, and it is a shame we don’t know how to nail the cause or good treatments. There is no doubt a small number of people who will suffer from a post-Covid syndrome, but to try to scare people with the idea that despite repeated and varied negative result covid-19 testing – you too! – could have debilitating fatigue and a slew of symptoms for an indefinite time after a mild infection that may or may not have been SARS2. Quit it, it’s not good science.
To Lauren:
I always thought good science was practiced by people who could stop, look and listen and take in the data, including the kind of experiences people are writing about here. That data needs to be included in the whole before drawing conclusions. We are all in the early phases of learning about SARS CoV2 and the impact it has on each of us. Remember this is a NEW virus so we have much to learn. I highly recommend TWIV (This Week in Virology) podcasts if you want to learn more about the interface between the immunologists, virologists, and clinicians. I have learned so much already and everyday the amount I realize I do not know increases exponentially.
Always beware when a doctor says, “It is all in your head.” Really be leery if the patient is a female. I am 78 and married for the third time. My wives always had this experience. This not just a Covid-19 issue. So check with another doctor. Some physicians cannot say, “I don’t know.”
My doctor did not take my symptoms seriously when I went in to see him AFTER I had gone through five weeks of illness ( three weeks of low grade fever/weakness and two weeks bed rest with no appetite) and recovered – I thought. I had nearly all the symptoms of COVID-19 except the loss of smell/taste and blood clots causing COVID toes. I tested as negative in an antigen test but I am thinking that doesn’t mean all that much with the possibility of false negatives. Two months later I am still recovering and overnight my blood pressure which was well controlled sky rocketed to dangerous levels and my normal medications weren’t controlling it. Now I have to go in for an ECG and echocardiogram. Seven years ago I had a complete and I mean COMPLETE cardiac workup. It turned out I had zero problems with my heart and arteries. I was then diagnosed with silent GERD which is no big deal. Cardiovascular disease doesn’t run in my family. I am starting to wonder if I am going to get to live to age 85 – 97 or my life is going to be cut short by 20 years or more due to COVID-19. I think being a woman doesn’t help matters because if you don’t have symptoms that fit exactly what is on the doctor’s little checklist you must be neurotic, hormonal or seeking attention.
This post-covid syndrome, and especially the average physician’s inability to trust patient reports of lingering debilitating symptoms they are experiencing, sounds very much like what many people with autoimmune illnesses go through before getting an actual diagnosis of autoimmune illness. It took me 12 years of severe fatigue, low grade fevers, and chronic leukopenia (that no doctor bothered mentioning to me in going over labs, and I didn’t know I had until I asked for all my lab reports) before a rash and swollen joints got me referred to a rheumatologist for an appropriate diagnosis of connective tissue disease. Much of what I’ve read about Covid 19 illness reminds me of autoimmune illness–the cytokine storms that apparently kill many of the patients who die from Covid, for instance, and now these post Covid symptoms. I believe I may have had Covid 19 in March–I certainly had the symptoms but no tests were available in my state. I’d been in close contact with people from New York City, so exposure to the virus was not impossible. I was actively ill for three weeks, my doctor put me on two separate antibiotics and said I should have a pulmonary function test when I felt better because he didn’t know why or what was going on with my lungs. I felt terrible, though had no fever or signs of active illness, for four months and didn’t begin to get over a persistent absolute exhaustion and chronic shortness of breath until on went on methylated prednisolone a week ago. I wonder if post Covid syndrome sufferers are suffering from some form of ongoing and inappropriate immune response. Before I learned that taking a burst of 16 mg. Medral at the first onset of a cold or other infectious illness, I invariably got sicker and stayed sick two to three times longer than anyone else I knew with the illness, usually by children and husband. I’d stay on 16 mgs, then taper off as soon as the illness began to wane. Now when I get a cold I don’t go into a panic because I know it doesn’t have to last a month and won’t lay me out flat the entire time I’m I’m sick. Taking a steroid burst and tapering off gradually now controls the truly awful problem of lingering infections that plagued me for decades. If I had had any documentary evidence of having had Covid, I’d have taken Medral long ago to address my persistent debilitating symptoms. I started a course of it for something else. I think it would be worth investigating for people who can’t seem to recover from Covid–whether or not their labs are positive. My hunch is that post Covid syndrome is an immune system problem, and most probably a problem of the immune system being hyper-activated.