@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 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..

@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???

@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 Good Morning. When I first got Covid over 2 years ago, there was so little about this debilitating disease. I live in California and there wasn’t much in my area for help. I went online, but many things were outdated. I also found many clinics in Southern California.Last year I found that there is a Long Covid clinic at Stanford Hospital in the Bay Area. My doctor referred me there and I have been seen and treated. Here are some websites you may want to explore. If you anre able to travel, there seems to be many clinics currently across the US. I still do not understand why every state isn’t addressing this. I do apologize if these are redundant and you already found them on your own. Wishing you all the best as you suffer through this horrible disease.-Diana

survivorcorps.com
longcovidalliance.org (List of clinics across US)
astho.org Long Covid resource guide dated 7/25, From the Association of state and territorial health officials

@ksblonde The reality is most Drs are not educated enough to understand the reality. Long COVID is there with symptoms that are not seeming realted . Well reality is Your immune system is actually overactive which is causing all the symptoms to get worse come on out of nowhere etc what the body is doing is Looking for what it know is left particles of COVID 19 the original and or variants. I know this as I suffer Long covid myself. So I was diagnosed with Myalgic Enchephlimitis and Chronic Fatigue Syndrome then Long Covid on top of it all in 2020 late that year. Unfortunately you will have no choice but to do your own medical research or pay more than most of us not able to finish our lives out working like we have been / I am 49 yrs old start my first job at 11 yrs old. It has lowered my husband and mines ability to pay for treatment.
1. All Covid 19 and variants have mold symptoms for most which is how it hides inside other cells for so long which is why the human Body ends up overactive immune trying to kill the remnants left of it .
If you get the flu, a fever blister, any other ailments your body will get weaker and weaker many of use suffer Cytokine storms in our bodies lungs
Go to Academia. Edu and type in Long covid etc and you will find help NAc and NAD shots or Iv help Alot and HBOT Hyperberic chamber 02 Alot along with anti inflammatory natural medicine. Etc