Long COVID providers/specialists?

Be aware that just about every specialty still are learning about long term affects. Unfortunately if they can't get to the bottom then you're shipped to another specialty.
I have suffered since 2-2022, even spent 2 weeks at Mayo and still left with an inconclusive diagnosis.
It's frustrating, depressing and sometimes you experience PTSD with all the gaslighting from physicians.
I would much rather a doctor tell me I don't know then to make me feel either crazy or unheard.

I just got my Mayo Clinic denial letter this morning. I am beyond devastated. It was my last hope on the horizon. I am a 54 year old woman and on my 5th year battling Post Covid Syndrome. I was healthy my whole life, I owned my own business for 32 years, never missed a day, even worked overtime while raising my kids. Until Covid. Now I am disabled, bedridden, and forgotten by friends and family. I am beyond thankful that my husband has stuck by me. Without him, I would need to be in a care home. I can no longer drive, do chores, go to the store, or spend quality time with my only grandchild. I am missing out on things that I can never get back. My big outings now are to Dr appts that offer no help or hope. I have been seeing nine specialists for most of these 5 years, but they each only look at their specialty. Many do not know much about or believe in long covid. They do not even care to research it. I have a long list of multi-system crossover diagnoses and nothing has helped. I have even had some treatments that have made things worse. My Neurologist said that my case is too complex, that many of my symptoms overlap specialties and diagnoses. He said that I needed a Multi-specialty Clinic to sort through and get to the bottom of my nightmare. I was optimistic and ready to go as soon as Mayo said to come. The denial letter said I should continue to follow up with my primary care and other doctors. When I read that part, I wanted to scream. It was like a punch in the gut. So here I am. I have no clue where to turn. Many leads have sent me to snake oil salesman just trying to take advantage of desperate people. I live in Kansas, I am willing to travel within the US. I am living on my disability, so out of pocket would not be ideal, but I have very good insurance coverage so far. Does anyone know what I could do, or what I should do, or where I can go now to get even a small piece of my life back? I am losing the last little bit of fight that I have left in me, so any information would be appreciated. Thanks in advance. God bless.

@ksblonde, getting the denial letter is a gut punch. Mayo Clinic receives more requests, than spots available. There are a couple things you can try, however. First, if you submitted a self-referral, you might ask your neurologist who suggested that you need a multidisciplinary center of excellence to submit a physician referral on your behalf. Since you are willing to travel, you could apply at a different Mayo Clinic location. Mayo Clinic in Rochester, MN and Jacksonville, FL both treat long Covid. Appointment applications and intake are through General Internal Medicine.

I moved your post to this discussion where members share other options for care:
- Long COVID providers/specialists?https://connect.mayoclinic.org/discussion/long-covid-providersspecialists/

@ksblonde, getting the denial letter is a gut punch. Mayo Clinic receives more requests, than spots available. There are a couple things you can try, however. First, if you submitted a self-referral, you might ask your neurologist who suggested that you need a multidisciplinary center of excellence to submit a physician referral on your behalf. Since you are willing to travel, you could apply at a different Mayo Clinic location. Mayo Clinic in Rochester, MN and Jacksonville, FL both treat long Covid. Appointment applications and intake are through General Internal Medicine.

I moved your post to this discussion where members share other options for care:
- Long COVID providers/specialists?https://connect.mayoclinic.org/discussion/long-covid-providersspecialists/

I just got my Mayo Clinic denial letter this morning. I am beyond devastated. It was my last hope on the horizon. I am a 54 year old woman and on my 5th year battling Post Covid Syndrome. I was healthy my whole life, I owned my own business for 32 years, never missed a day, even worked overtime while raising my kids. Until Covid. Now I am disabled, bedridden, and forgotten by friends and family. I am beyond thankful that my husband has stuck by me. Without him, I would need to be in a care home. I can no longer drive, do chores, go to the store, or spend quality time with my only grandchild. I am missing out on things that I can never get back. My big outings now are to Dr appts that offer no help or hope. I have been seeing nine specialists for most of these 5 years, but they each only look at their specialty. Many do not know much about or believe in long covid. They do not even care to research it. I have a long list of multi-system crossover diagnoses and nothing has helped. I have even had some treatments that have made things worse. My Neurologist said that my case is too complex, that many of my symptoms overlap specialties and diagnoses. He said that I needed a Multi-specialty Clinic to sort through and get to the bottom of my nightmare. I was optimistic and ready to go as soon as Mayo said to come. The denial letter said I should continue to follow up with my primary care and other doctors. When I read that part, I wanted to scream. It was like a punch in the gut. So here I am. I have no clue where to turn. Many leads have sent me to snake oil salesman just trying to take advantage of desperate people. I live in Kansas, I am willing to travel within the US. I am living on my disability, so out of pocket would not be ideal, but I have very good insurance coverage so far. Does anyone know what I could do, or what I should do, or where I can go now to get even a small piece of my life back? I am losing the last little bit of fight that I have left in me, so any information would be appreciated. Thanks in advance. God bless.

@ksblonde I too was just denied by Mayo in Rochester, my denial was by phone last Thursday, the 8th.. not by letter, I too was referred by my primary physician...I got COVID from someone on a plane or airport Dec. 14, 2019 and was soooo sick, I went to a doctor and she tested me for all the usual viruses and they came back negative then told me " you do have a virus and we don't know what this is" those where her exact words, I'll never forget it and I haven't been the same since, I can hardly get through a day, pain everyday, along with other symptoms, my primary as well as other specialists i have been to have tried everything ..Mayo was my one hope, they have better tests and and can test for things that can't be done here, it's why my primary referred me to Mayo..I know there is no cure for this but I wanted to find out what damage is being done to my organs..my body...what are we supposed to do other than be another one that this virus has killed off, I too was great before covid..