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

@kirsuma
I believe many don’t know much about long covid so they try to diagnose and treat symptoms. Are you being treated for all of the symptoms you listed (are you taking anything to help you sleep, have you been given muscle relaxers, have you had a sleep study, have you had a brain or cervical spine mri to see what might be behind your headaches, have you seen a neurologist, etc.)? I would not delay getting diagnosed and treated because you can’t find someone to say it is all tied to long covid. I don’t think they have studied enough of the covid vaccines and viral infection that causes many to have long covid symptoms. They still need to know more about covid and the spike proteins impact on health. I have read there is significant impact to heart, lung, nervous system and endothelial cells.

My LC journey began in November ‘21 and my first Doctor stop was my GP in January ‘22. I went through the 2 major medical providers in Charleston, SC before going to the Mayo Clinic in Rochester. One of my Doctors in Charleston coined my journey, “the journey of what’s it’s not”. They did their best in 2022 when we knew very little and unfortunately in 2024 I’m not thinking we know much more. I would advocate at least 2 things - first, self advocate because nobody is standing by trying to help you, and second never give up. You will find a solution. Fortunately for me Medicare covered everything but unfortunately I still suffer from LC.

I don’t have answers but I wish all doctors would take it seriously. It’s happening, it’s not that new anymore, and should be taken seriously. It kind of feels like progress is going in the opposite direction like the newness of it is gone and everyone is over it. I feel like there’s got to be a system where long covid patients are given a minimum panel of testing for the most common long covid health problems then others depending on symptoms since they vary from person to person. I hate feeling like I put hope into a doctor, they dismiss long covid, and I’m left feeling like it’s in my head or I’m blowing it out of proportion. It’s heartbreaking.

I’m so sorry you’re suffering and for so long. I too, am on year 2 of no taste or smell due to Covid in December of 2022. I just had an anniversary on December 16th of no taste or smell, except I did not celebrate! I am doing a lot of my own research as nobody really has an answer. I’ve had 7 Stellate Ganglion Block Injections to try to regain it, but it’s only brought back a more salty, sweet or bitter taste on my tongue and the last injection I had really did not do anything. I will continue to get these injections of Lidocaine into my neck, as they actually take the jitters out of my body. I will continue to go for that reason and who knows, maybe it will eventually bring back my taste and smell. Good luck and Happy Holidays!

My best wishes to each and every one of you and all you have long COVID. It is real. It exists whether a particular MD treats it seriously or not. You know it is true and I know it, as well. I am the parent of a daughter who had CFS (chronic fatigue syndrome), which is now included with long-COVID in the same group of post-viral infection syndromes. Believe in yourself, I hope you have someone else who also believes you and can help with travel to appointments. Start locally and if you don't get taken seriously there, go to the next larger city, and finally go to the largest clinic you can find, or if you are near that large clinic, go there immediately. Look for a sympathetic, understanding medical professional. Unfortunately, there is no "cure" for long-COVID or for any of the post-viral infection syndromes. But there are measures and supplements that can help. My daughter ended up seeing a psychiatrist-neurologist who was interested in Chronic Fatigue Syndrome. She still goes there even though she is has been over it for about 17 years. My heart goes out to each and every one of you because the medical profession does not, to a person, take it seriously. It is very serious to each and every one of you and you deserve excellent, understanding, caring treatment. Good luck.

Sorry to hear that you are still dealing with LC. I too have had the exact same time frame and I am still dealing with LC. It gets very frustrating when the professionals still don’t know what to do. We must not give up and need to be our biggest advocate! Keep fighting the good fight 🙂.