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

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.

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.

We have to be our own advocate. I suggest looking at the YouTube Channel of the Bateman Horne Institute. I also recommend the YouTube Channel of Gez Medinger. These are free and are full of information.
I saw myself described by these professionals and I provided the links to my PCP which he appreciated.
I'm a female, 82 years old and 4 years Post Covid and still working on recovery.
My best to you.
Happy Holidays

I have reached out to the Rochester Mayo Clinic and they are reviewing my symptoms to see if they will schedule an appointment. Were they able to help you at all?

My husband is having same problem. In 2022 had mild case of Covid. Immediately thereafter developed POTS , w/i 2 month period of time 2 transfusions of 4 bags each time. October 2023 diagnosed with Multiple Myeloma been on lenilomide $ dexamethadose …can’t sleep at night, breathless even when using oxygen and very weak. Sleeps on and off all day. Oncologist doesn’t believe it’s MM drugs but no one sees connection with or will admit to long COVID being cause

Hi! I totally understand this! I’m 3 yrs in since I had Covid in Jan 2022! I stayed so stressed with bills piling and getting nothing from it. I have so many things wrong that I’m a totally different person than I was 3 yrs ago. I’m just now today about to start over w new doctors in a new state. I’m so anxious about seeing a different doctor since my doctor knew me before I got Covid and had heard and seen everything. He has done more for me to help my symptoms than any specialist or big clinics but still I continue to add to my list of weird and unexplained issues and full body constant neuropathy, I’ve lost all the muscle in my body, my legs give out on me, I drop everything, my vision has oddly changed and my mind feels it’s about gone. I can’t remember what happened yesterday or sometimes 5 min ago, like it never happened. I’m having more and more time lapse in each day. I’ve been in a bath for 5 hrs at times thinking it had only been a hour. I can’t remember if I did something or just thought about doing it. I’ve had times I have “whited out, like black out” and luckily my boyfriend seen it before I did to sit me down. My family and friends left me not believing things I tried telling them. My siblings actually told me it’s a burden to take care of someone else when you have your own life to live and needless to say they have nothing to do with me. I’m 47 and just had left a marriage after 24 yrs before I got Covid. I got “1” good year with family and friends and not one friend or caring family, not even my daughter that’s been turn against me in site. I even explain in many tears how cared I am and wanted to just not wake up and still nobody cared and moved on without me. So now a totally unexplainable shattered heart adds to my totally weak and distressed body and mind. Life is lonely and terrible and not worth the hurt, the way people make me feel, and barely being able to leave the house. On my worse days people I encounter in a state that I don’t know not one person, look and treat me like I’m slow or mentally handicapped because sometimes my words aren’t right or I can’t get the answer out, I have a type of silent seizures, or that’s what my doctor is thinking it is, some days I have to walk with a cane, though I try not to because I think I look silly being so young and people stare at me. My tailbone is in constant pain. It’s the filling as if you fell on it and a lot of people know that feeling, but it don’t go away. Last time goes on the pain of my spine gets worse also with my hips and my legs and if I’m going down, there’s not much notice beforehand my left leg just gives out in my right leg. Seems to forget how to step forward. I got to the chiropractor all the time for her to align my body in every time it’s all out of whack. Just made a new house with my friend that came to get me and brought me here so I wasn’t alone. I can’t even do much to help. If I clean a window, I will greatly pay for it for you a few days a few weeks I never know. Life is terrible.

Hi! I totally understand this! I’m 3 yrs in since I had Covid in Jan 2022! I stayed so stressed with bills piling and getting nothing from it. I have so many things wrong that I’m a totally different person than I was 3 yrs ago. I’m just now today about to start over w new doctors in a new state. I’m so anxious about seeing a different doctor since my doctor knew me before I got Covid and had heard and seen everything. He has done more for me to help my symptoms than any specialist or big clinics but still I continue to add to my list of weird and unexplained issues and full body constant neuropathy, I’ve lost all the muscle in my body, my legs give out on me, I drop everything, my vision has oddly changed and my mind feels it’s about gone. I can’t remember what happened yesterday or sometimes 5 min ago, like it never happened. I’m having more and more time lapse in each day. I’ve been in a bath for 5 hrs at times thinking it had only been a hour. I can’t remember if I did something or just thought about doing it. I’ve had times I have “whited out, like black out” and luckily my boyfriend seen it before I did to sit me down. My family and friends left me not believing things I tried telling them. My siblings actually told me it’s a burden to take care of someone else when you have your own life to live and needless to say they have nothing to do with me. I’m 47 and just had left a marriage after 24 yrs before I got Covid. I got “1” good year with family and friends and not one friend or caring family, not even my daughter that’s been turn against me in site. I even explain in many tears how cared I am and wanted to just not wake up and still nobody cared and moved on without me. So now a totally unexplainable shattered heart adds to my totally weak and distressed body and mind. Life is lonely and terrible and not worth the hurt, the way people make me feel, and barely being able to leave the house. On my worse days people I encounter in a state that I don’t know not one person, look and treat me like I’m slow or mentally handicapped because sometimes my words aren’t right or I can’t get the answer out, I have a type of silent seizures, or that’s what my doctor is thinking it is, some days I have to walk with a cane, though I try not to because I think I look silly being so young and people stare at me. My tailbone is in constant pain. It’s the filling as if you fell on it and a lot of people know that feeling, but it don’t go away. Last time goes on the pain of my spine gets worse also with my hips and my legs and if I’m going down, there’s not much notice beforehand my left leg just gives out in my right leg. Seems to forget how to step forward. I got to the chiropractor all the time for her to align my body in every time it’s all out of whack. Just made a new house with my friend that came to get me and brought me here so I wasn’t alone. I can’t even do much to help. If I clean a window, I will greatly pay for it for you a few days a few weeks I never know. Life is terrible.