Care denied from Mayo for my PCS with no positive test

Posted by bbartolotto @bbartolotto, Jul 11, 2022

In February 2020 I got a fever then a severe upper respiratory infection and have had multiple PCS symptoms ever since. There were no COVID tests available at the time so I never tested positive. When I call Mayo they look at my record of calling in with chronic fatigue and no positive test and say I am denied care even though I have outstanding insurance. This doesn't seem right to me or other people I tell this story to. Anybody else experience the same?

Thanks,
Bill Bartolotto

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

Yup. I was accepted, then denied when my only positive test was a T-cell test. PCS since 9/11/2020 – asymptomatic acute infection. Being treated through our local Post Covid Recovery Clinic.

To find your local clinic:
https://www.survivorcorps.com/pccc

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Hello Bill –
It certainly seems unfair, and my daughter had the same experience. She was an ER nurse, caught it at work, every symptom in the book & still rejected. She asked why, and it was explained that the demand is so high for treatment that there have to be filters – baseline requirements – for acceptance, and one is the positive test because so many other illnesses have similar symptoms.

BUT, she was accepted into the local post-Covid program and it has worked for her. As a matter of fact, with the doctors and therapists available locally in person or video care, she feels it is even better for her long-term needs than Mayo would have been.

Hang in there, and as was recommended, check for a local program.
Sue

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Hi @bbartolotto, I'm sorry you feel your experience at Mayo Clinic was unsatisfactory. They have an Office of Patient Experience, and if you wish, you can contact them about your concerns at 1-844-544-0036 or via email at OPX@mayo.edu.

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I had two negative tests a year ago, yet was very ill with what my doctor said was definitely Covid. I was sick for six weeks and didn’t test until two weeks in. I lost my sense of smell and it has never returned. I am now experiencing what is probable long Covid. Fatigue, weird unexplained Trigeminal neuralgia and parotitis.
Science still has a lot to learn about this virus. Thoughts and best wishes to you.

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Did you have your blood tested for COVID titers. Your PCP can order that unless you were vaccinated.

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@sueinmn

Hello Bill –
It certainly seems unfair, and my daughter had the same experience. She was an ER nurse, caught it at work, every symptom in the book & still rejected. She asked why, and it was explained that the demand is so high for treatment that there have to be filters – baseline requirements – for acceptance, and one is the positive test because so many other illnesses have similar symptoms.

BUT, she was accepted into the local post-Covid program and it has worked for her. As a matter of fact, with the doctors and therapists available locally in person or video care, she feels it is even better for her long-term needs than Mayo would have been.

Hang in there, and as was recommended, check for a local program.
Sue

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Hello- What has worked in her program? I’m dealing with headaches and so far nothing has worked. Thanks!!

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@pkpeterson

Hello- What has worked in her program? I’m dealing with headaches and so far nothing has worked. Thanks!!

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Her symptoms, fortunately, did not include headaches. She found a combination of techniques to help her. As an independent adult she has not shared all of them with me, but some include gentle exercise, close awareness of her energy each day and limiting activities to accommodate.

Are you in a post-Covid program, or working with a headache specialist?
Sue

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@pkpeterson

Hello- What has worked in her program? I’m dealing with headaches and so far nothing has worked. Thanks!!

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If you’re still having headaches, please see a neurologist who specializes in headaches. I have chronic migraines and see a neurologist at Mayo. When I contracted covid and tested positive on 6/30/22 (PCR), I had a migraine that would not stop. I reached out to my care team thru the portal and was directed to try Ubrelvy. I tried it and it worked! It broke the pain and I haven’t had a migraine since! I was so amazed and grateful for the relief!

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@pkpeterson

Hello- What has worked in her program? I’m dealing with headaches and so far nothing has worked. Thanks!!

Jump to this post

Acupuncture especially targeting cranial nerves has helped me with the severe headaches

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