Long COVID providers/specialists?

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.

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.

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 curious if the denials are because of long COVID or insurance....I never would have believed they would turn someone away..my sister in law needed surgery for cancer of the small intestine and also was denied by Mayo...it was the nurse who got her in and she did get her surgery at Mayo, they did a fantastic job, this just happened a month ago..I know they are great at what they do, so I am shocked right now with the denial thing..what is going on???

I am so sorry you were denied. Did you receive a reason for your denial?

I, too, was denied when my physician (neurologist) referred me to the Long COVID clinic at my closest teaching hospital that has a Long Covid Clinic, Oregon Health Sciences University. The reason I was denied was instructive: I did not send in a referral from a physician who was a member of the OHSU faculty. They have so many referrals that they only take patients who are already under the care of a physician who is on the OHSU faculty, i.e., I would have to be a patient of OHSU in another department and have been referred by another OHSU physician. No, I live in another city and my referring physician was not on the faculty of OHSU, and OHSU is 120 miles away. I'm not driving 120 miles for each appointment in order to be seen by an OSHU faculty member who could refer me to their Long-COVID Clinic.
Your denial may have nothing to do with your case. Long-COVID clinics fill up so fast, they have very strict guidelines on who they accept. Did they give you a reason for their denial?
Again, I'm so sorry you have been affected so severely by Long-COVID. You may still find gradual recovery. My best to you.

@ksblonde all you said above is true. I have not had it as long as you. I’m frustrated by the non concern of docs to even want to research this. Last week my daughter brought me CBD Gummies. One in particular seems to ease my various and sundry pain, from a level 9 to about a level 5.. this was only since T lowered Marijuana from a 3 to a 1. So some states now allow some CvS pharmacy’s to sell it, in a separate section of pharmacy, with a person who has knowledge about it. The CbC is the part of Marjiuana that does not have the “ high” part of it in it.

@ksblonde all you said above is true. I have not had it as long as you. I’m frustrated by the non concern of docs to even want to research this. Last week my daughter brought me CBD Gummies. One in particular seems to ease my various and sundry pain, from a level 9 to about a level 5.. this was only since T lowered Marijuana from a 3 to a 1. So some states now allow some CvS pharmacy’s to sell it, in a separate section of pharmacy, with a person who has knowledge about it. The CbC is the part of Marjiuana that does not have the “ high” part of it in it.

@kyrazpollet I've had LC for two years now and have been to multiple doctors. They just don't have any knowledge of the illnesses of LC or how to treat them. That's why most of us do our own research, our own diagnosing and just hope for positive results from some of the information and products we find that has worked for others. It takes time and perseverance. It is frustrating, but you need to keep pushing forward and staying hopeful.

@shelleyr in getting anxious not knowing what to expect after dealing withLC for 5 months. My active lifestyle has changed because of my debilitating fatigue.