Mayo Clinic Trip Report
Edited 2/8:
I received a lot of comments from people wanting more specifics on the overall clinical plan from the Mayo Clinic. I hesitated in sharing that at first because there is SO MUCH out there on what works for some people and doesn't work for others - and, after living in this world for 18 months, I know there isn't a silver bullet cure (apologies to the newer Long Haulers who might not have reached that point yet). That said, here is a summary of testing I had done, what Dr. Grach recommended, and next steps. Please DM me for more details if you need!
Before arriving at Mayo Clinic, I had a lot of testing done to indicate no EBV reactivation, no Lyme, normal hormone levels, clear Brain MRIs, and normal EMG, normal echocardiogram, normal ZioPatch, normal CT chest scan (among lots of other tests). My "abnormal" results to date were an elevated Rheumatoid Factor, very low Iron (with no clear reason), and a subclass Immunodeficiency. Dr. Grach ordered additional blood tests (some of which I honestly don't know what they are for), autonomic testing (e.g. tilt table), nuclear scan (to test for arthritis), and arterial tone testing (to test for endothelial dysfunction). Most of these came back normal, although my subjective experience on the tilt table suggests I have some version of orthostatic intolerance.
Recommendations: Given a mostly clean bill of testing, she concluded that my autonomic nervous system is dysregulated (stuck in "fight or flight") and priority should be on trying to induce more of the parasympathetic response before trying to increase energy levels. So, for me, that will involve going on a Beta Blocker (also because my migraines are horrible), and then working on increasing my energy budget. That could be with things like Guanfacine or the Nicotine Patch. Her goal is to show there are many options for symptom support, and so we talked about HBOT, IVIG (which I am a candidate for), neuroplasticity (don't kill me on this one - it's not something she overtly recommends, but is a small piece to the overall puzzle of trying to calm your nervous system down), SNRIs, and supplements like Arginine. As with every person, success will differ. She has seen people improve on HBOT (no miracle cures) and also people get worse. Same with IVIG. If you were hoping she has the magical cure - she doesn't. She just helped summarize everything in a way that made sense and explained the disease process very clearly.
Lastly - I am chasing down a final blood test result that could indicate a type of Anemia. I don't have answers yet as to what this means for me and if it could explain some of my symptoms, but that did come out of the testing done at Mayo that showed something new. This was a Parietal Cell Antibody Test.
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Tl;dr: I would recommend Mayo for those who can have it covered by insurance, want to have an efficient way to get a lot of testing done, and who are assigned to Dr. Grach - she is amazing. Keep your expectations low for the other specialists at Mayo, as they are not all knowledgable in Long Covid or ME/CFS. Beware of the cost and the exhausting nature of the visit - it's not going to be easy for those who are really severe.
Hey fellow long-haulers - I wanted to write up a report after spending a week+ at the Mayo Clinic in Rochester, MN. Hopefully the info here can provide useful to others. Apologies in advance for the lengthy post - it was a long and, at times, challenging week and part of writing this down is both to help others and help myself process the experience.
About me: Early 30s, female. I got Long Covid from my first infection back in September '23 (I was vaccinated and boosted). Prior to getting Covid, I was healthy and an athlete - I trained with a coach, ran marathons, mountain biked, etc. I pretty much never recovered from my September infection, and quickly found myself in the world of Long Covid. At first, my symptoms were primarily cardiovascular, including high heart rate, palpitations, shortness of breath, and adrenaline dumps. Over time, symptoms have spread to include generalized muscle pain/burning, chronic migraines, tremors, PEM, and overall fatigue. Despite all of this, I consider myself moderate in the Long Covid community. I am no longer housebound, can work from home, do most daily activities and socialize, but can't exercise, need to nap most days, and have bouts of days where I can't do much at all.
Why Mayo? I live in a fairly rural area, about 3 hours from a major city. Local healthcare isn't the best, but I've found a good virtual provider (in-state) for who has helped me cover some of the basic blood tests, medications (LDN), and has referred me out to appropriate specialists as needed. As many of y'all know, most specialists are uneducated in Long Covid - once they rule out the big diseases, they can't really help you. I found myself in that position in Fall 2024 where I'd had a host of testing, was still feeling pretty awful, and had no explanation for some of my more serious symptoms, like tremors. My doctor had success with patients going to Mayo before, and she was my referring doctor. After she referred me (in November), I got an appointment within 2 months.
How the Mayo Clinic works for Long-Haulers: I didn't really know what to expect at Mayo, so I'm hoping this helps others understand the process. Mayo Clinic works on a consultative basis. This means they are not designed to be a continuing medical provider - you go to the Clinic for a period of time, meet with a bunch of doctors, and leave with a recommendation for next steps for you to bring to your Primary Care at home. For Long Covid, the program is run by Internal Medicine. You will be assigned an Internal Medicine physician who serves as your coordinating doctor for your visit. You will meet with them first for ~90 minutes, where they will listen to your symptoms and do a physical exam. After this, they will order additional testing (blood tests and others) and refer you to other specialists as needed. You end your time at Mayo with another visit with your coordinating physician, to discuss results and recommendations for next steps. This final visit was 2 hours (!) and incredibly valuable. After this final visit, you are put into a group "Long Covid Program" and meet with a nurse a few times. I haven't started this yet, so I can't comment on how useful this is. Important: I was told to expect to spend 2-3 days in Rochester, MN. This was a vast underestimate and I ended up being in Rochester for ~10 days. The main reason is that it just takes time to do all of the tests - for example, if something comes back abnormal, you will then need to see a specialist. That whole process of getting blood tested, receiving results, and scheduling with a specialist can take 2-3 days. It's super fast when compared to traditional medical establishments, but still means you might spend longer than expected at the clinic. I'd recommend at least going for a full Monday thru Friday and keeping travel plans flexible through the weekend.
The positives of the Mayo Experience: My coordinating doctor was Dr. Stephanie Grach. She is relatively young (which is a plus in my book), trained at Bateman-Horne in ME/CFS, and is an emerging leader in the chronic illness community. In short, she is phenomenal. I think seeing her alone was worth the visit, just because she is so current on the research, sees many Long Covid patients, believes us (!!), and can explain what is happening to our bodies in a way no doctor has been able to before. In our last visit, she answered every question I had with patience, empathy, and a detailed explanation. We spent a TON of time on the final visit and I really felt this was a valuable appointment. Additionally, being in one place to do testing was highly convenient and made me feel confident that we had done a thorough workup.
The negatives of the Mayo Clinic: Despite Dr. Grach having loads of experience in Long Covid, the specialists I met with (neurology, hematology, dietician, physical therapy) were vastly uneducated. It was really discouraging and honestly, for most of the week, I felt like I was just wasting my time. Additionally, the experience of being at Mayo is intense and probably won't work for those who are most severe. You can have a pretty packed schedule of testing and appointments, and it can feel overwhelming to have so much testing. Additionally, the Mayo Clinic campus is surprisingly spread out. I easily worked up 10K steps a day wandering through the Skyway/Subway (internal walkway system) to the hotel and back. There are wheelchairs available, so if that sounds daunting, definitely request accommodation to have one! Additionally, as someone who is relatively young and identified as healthy not long ago, it's a pretty emotionally taxing experience. You are surrounded by extremely sick people, and you are going through a ton of testing in a short period of time. Some of those tests are for very scary diseases. I know we all have faced some of these tests before, but I felt that just the sheer number of tests and results in a short period of time took a LOT out of me. Lastly, going to Mayo was expensive. It was easily a $3K+ visit. We stayed at the Hilton (definitely more expensive than other options, but highly convenient), rented a car (not necessary, but makes you feel less claustrophobic), and ate out for most meals.
The Takeaway: If you've made it this far, I appreciate you! Would I recommend Mayo? It's complicated. Yes, if you see Dr. Grach. She is incredible. I can't speak to the other Long Covid doctors, so it's hard to say. The experience is exhausting and you don't always see doctors who are educated in Long Covid. But, you get a lot of testing done in one place, and in my situation, it was covered by insurance. In the end, we did uncover some other medical issues that are going on that might be contributing to my symptoms. I don't think I would have discovered this otherwise, or if I did, it would have taken 6+ months of finding the right specialist.