How can I find a MD who will acknowledge long covid?

Mayo Neurology

Hi @kirsuma. Too hard to read thru all so hope this helpful. Most healthcare systems have patient advocate/clinical social worker depts that maybe you havnt reached out to? They can seek treating doctors info from your healthcare systems long covid clinic and/or find physicians thru their database that have treated post long haul covid now that diagnosis codes are available to identify more of us and “see” the doctors with more treatment experience🤞 Wishing you the quickest healing journey🌈

I know it is hard to do on a budget but I finally gave up on MHealth and went to a concierge doctor. You pay a fee to them yearly but they have the time to spend with you so are able to really understand the problems with Long COVID. Mine just put me on an antiviral after asking to trial one for over four years with other doctors.

My Doctor at Kaiser recognizes it and even wrote on my chart: Long Covid patient. However, getting the care you need is a trial and error sort of thing, because a lot of them do not know how to treat all the symptoms for Long covid so they will send you here and there. I have been sent to a Heart doctor, Pulmonary, Gastro, Therapist, etc. So just know it will take some rounds. I have had Long Covid for 1 year and 6 months. Some symptoms have gone away and others not. Sometimes, I feel okay and others not. I have Gastro problems and tremors and chronic fatigue syndrome and depression from getting Covid that turned into Long Covid. Just know, they don't know that much about it all yet.

I know how you feel. I'm being driven to the unpleasant but obvious conclusion that there isn't much help out there.

I've learned more about how to manage my diminished post-COVID life better, here, on this board, in a couple of days, than I have with four years of visits with five doctors. My conclusion from that within the medical community at large there is there isn't much out there.

Medical politics are something I don't want to get into. I'm looking for help - not where to place blame. Thank God that Mayo is morally well-intentioned and big enough to resist the pressures of big pharma, big government, big insurance, and politically managed medicine. This board is part of Mayo's institution and it works because we can use it, come together, and learn from each other.

I find that what I can do is tied to what you can do.

Our hope is in God and in each other - we can provide at least partial answers for each other where individual doctors, collectively, cannot access our information because their system is defective.

Don't give up hope - and keep up the search.

Question....are you still testing positive for COVID?

A "Hopkins Trial" cardiologist sent me for many cardiac tests because of heart palpitations, a-fib, pvcs, pacs...24/7. He immediately said he is sure it is long covid before he even ordered these tests. And he is NOT my regular cardiologist. He is a brilliant Hopkins Cardiologist/Professor in charge of a medical trial I am in which is not COVID related. We had an appointment and he asked how I was doing. When I told him, I had Covid and pneumonia right after our last visit, and here it was 8 months later, he said "I'll run tests but I am pretty sure it is long Covid". So I had a monitor for 3 weeks, a CT scan, a arterial scan and also an Echo, he found I had developed a second murmur that I never had before. But, there was nothing really that would cause the issues other than what Covid left me with. He predicted the symptoms would be gone hopefully within a year's time. Exactly one year after Covid and the heart issues, this past November, all the issues were gone. POOF.
I took the test results to my regular cardiologist, and shared via online first and then brought in the written results. Well, he was "sick" for my appointment and I got a call that he could not see me but I could see the NP. So....in I went, and this NP came in the room with a scowl on her face and when I told her why I brought in results, and also why the circumstances led me to have the tests via Hopkins since I am in a gene trial and have been for several years she said "I'VE NEVER HEARD OF SUCH A THING AS LONG COVID". AND YOU ARE IN TRIALS? HOPKINS TRIALS?"
So, I have a doctor who believed me but he is not my regular cardiologist. He was thorough and gave me the results as they came in. He was honest and said, they can try and help with symptoms but there is nothing at this point anything else the medical field can do. It is too early to understand the damage COVID can cause.
My point is this: I have a doctor who was proactive in testing the symptoms, believing in Long Covid, and admitting there is no treatment. He also said if a doctor says he/she can cure it, or needles in the ears acupuncture, etc. etc. etc., can cure it........RUN. Treat the symptoms and hope it all goes away.
*side note---I will never go back to my local cardiologist whom I only saw a handful of times.

My husband, who has a lung transplant had Covid a couple of years ago. He had several complications including pneumonia; however, after they discharged him from the Mayo Clinic he started having fevers, shakes and memory loss. To make the story short, he was admitted 8 times in 3 months and every time they sent him home, because they couldn’t find anything (although most of the test results were off the charts), he came home weaker. I had to convince the doctors that this could be a case of long Covid and found an expert in long Covid at Mayo Rochester who finally diagnosed him. The patient and the caregiver are the best advocates for the patient’s health. Good luck in your search for answers.