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Has anyone been a part of any of the Mayo Clinic studies?
I’m Joshuah, known as The Creature Preacher online. I would like to share my story, so you can understand my question . The Onset and Initial Battle (2021)
In 2021, my wife and I both fell sick. After a few weeks of illness and testing negative for COVID, we flew to Alaska to visit her family. On the return trip, the moment we got home, we felt as though we had suddenly come down with the flu. Given the severity, we quickly realized it had to be COVID. We were not vaccinated; we didn't have the opportunity, and at the time, we weren't sure if it was worth getting the vaccines, as I was in my mid-thirties and my wife was in her early twenties, and we were both younger, healthier individuals. We were both very sick for a couple of months, and I remember thinking this stuff was changing me from the inside out: I developed rashes, pain, vision disturbances like visual snow, fatigue, and brain fog.
After about seven months, we both started to mysteriously and slowly get a bit better. In the meantime, I went through doctor after hospital visit trying to figure out what was wrong with me before I was finally diagnosed with Long COVID. The virus brought on a cascade of medical issues: Hospital visits led to neurological tests where a slight Chiari malformation in my brain was found; heart exams showed mitral valve regurgitation and bradycardia (a very low heartbeat), as well as POTS (Postural Orthostatic Tachycardia Syndrome), which causes me to feel faint when I stand up too quickly. My doctors suspect that I have had an underlying autoimmune disorder my whole life that COVID made worse, though I still lack a definitive diagnosis. Along the way, I was also diagnosed with ankylosing spondylitis, something I had surgery for when I was a young man.
Relief and Relapse (2022–2024)
For about a year and a half, my symptoms slowly dropped away one by one until only manageable remnants of POTS, visual snow, and lack of sleep were left. However, a series of stresses in 2024 initiated the process of getting sick all over again. My dog went missing, I had some issues elsewhere, and poor eating and not working out took a toll. I started getting sick with everything: colds, flu—I was sick with seven different things last year alone. My wife and I went to Georgia on vacation and got sick with what I suspect was COVID because for the next six months I felt horrible. I eventually got to about 85 to 90 percent better and started traveling again.
While I was doing some work in Naples, at Kowiachobee Zoo. I’m a traveling Zoologist when healthy, my friend started feeling poorly on the second day and tested positive for COVID, so I immediately left for the nine-hour drive home. When I arrived, I was very sick for about two weeks, but I started to bounce back. However, at about the three-month mark, I still wasn't better, and things took a mysterious turn for the worse. My vision became very blurry at times; I developed muscle aches and pains, and a horrible headache starting in my neck creeped through my brain with terrible pressure. The brain fog is the most crippling aspect. I can't work, I can't remember anything, and I am constantly afraid.
The Search for Understanding
I finally broke down and went to the Emergency Room again last night for this latest flare-up. They told me what all the other doctors pretty much tell me: my heart and brain look okay on paper, and there is nothing they can do for me. The only hope I have now is potentially the Mayo Clinic taking part in some studies, or a local doctor whom I've been told has experienced Long COVID himself and truly understands. I'm trying desperately to get in with him now because I believe it might save my life. I'm just tired of being sick all the time. In the meantime, people around me who truly know me understand that I'm telling the truth, but others think I'm a liar, a lunatic, or a hypochondriac. Even doctors and nurses still treat me like a leper when I say Long COVID. If they were forced to live for just one week in my shoes, they would understand the sheer horror of this. Oddly enough, although COVID stole my ability to work and left me with lingering effects, I've tried to focus on the positives. I've always been a natural storyteller and maintained a heavy presence on social media. The virus changed my voice into a deep, mellow voice for about seven months; I believe this was due to vagal nerve damage sustained during the initial infection. Even now, some of that deep quality remains. Because I lost my previous job, I was able to focus on my social media presence, and when I am able, that is what I do now for a living. However, I haven't been feeling well for the last few weeks, and I haven't been able to work. I am currently unable to recall facts or put a story together on the fly the way I used to so easily. If you took the time to read this, thank you. And if you have taken part in a study, I would love to hear what study? If it is open? And how it helped you forever in your debt - Josh-
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@sailorsrwinners
What did MayoClinic actually do that you found so beneficial?
I have to say I'm a bit struck by the fact that you say you were initially "too young" to have gotten vaccinated, and then had several bouts with acute Covid, yet make no mention of having ever gotten vaccinated even in following years, despite lots of travel! I know there are people on this forum that feel that vaccinations make their LC worse, but OTOH you have to balance that against the damage that another Covid infection might do to you, as it indeed sounds like it (they) did.
To your actual question, I don't believe that there is any particular cure on the immediate horizon. People have tried a myriad of approaches, and some people have some success with some of them while others do not. It appears at this point to be a matter of throwing things against the wall to see what sticks, and yes, I do feel it is pretty much that random. There had supposedly been over a BILLION dollars set aside to study this particular illness at the NIH, but with its current politicization at the hands of this administration and subsequent disembowelment, it's unclear to what extent we can look in that direction for answers.
Sorry I don't have anything more positive or constructive to offer, but that's the way I truly see things. You may just have to wait it out and try to not over-do things.
I had what felt like the identical syndrome back in the eighties ("CFS"), and for me it just mysteriously went away after two years, so I hope that repeats for me in about six months.
Best of luck, and I'm truly sorry about your dog.
@kabowen87
Which mayo was Dr Grach at? Its strange that there is such a big difference between the treatments you get at different Mayo clinics......
@bermuda8 Rochester
Hi Josh, hang in there! As we know, this long Covid is no joke! It’s been five years for me. I am getting better. But it’s been quite the journey trying LDN, different diet, supplements, etc. Covid definitely goes in and attacks whatever weakness individuals have. My Covid reactivated Epstein-Barr virus that I got back in college 35 years ago in the form of Mono. So I’m dealing with chronic fatigue and migraines plus brain fog . Nova South eastern University has a Neuro immune department that helps people with CFS, long Covid, pots and other things. Worth looking into they’re very helpful.
@bermuda8 yes, Dr. Grach is at Rochester. But timing may also have made a difference. I only went at the beginning of this year (2025), and they are improving all the time.
@homemarcy
Thanks - I went to Jacksonville at the end of 2024 so it was in a relatively close timeframe.
@julesmango How is reactivated EB treated? I suspect that has happened with me. Glad you got some help. Going on six years for me come March.
@homemarcy, the first step is to submit a request for an appointment with Internal Medicine at Mayo Clinic. You can start here: https://mayocl.in/1mtmR63
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2 ReactionsHi Josh - thank you for sharing and please know you are not alone - EVER! I can emphatically say that while I can only imagine the situation from your perspective, I, tell people that the previous 'me' died on April 19, 2022 and now I drag this broken body and try to protect my mind since then. Short answer - yes, I have been in two Mayo Clinic studies for Long COVID, and one with University of Wisconsin so far. The ones I was in are closed now. Consider reviewing the RECOVER website for past info and/or for any open or next studies ... https://recovercovid.org/ As to 'handling it' -- I'll also put a shout out to my cousin's podcast - 'Taking a Provisional' on youtube --> it's not specific to Long Covid, it's simply a guy's perspective on chronic pain / chronicity of health issues and how to turn it into as much good as possible, staying positive while also acknowledging how it changes everything. I am biased that it's good since he's family - yet I appreciate his humor and snarky wit tucked into what he's learned and wishes to share if may help others... recognizing we (humans) can only control our 1) attitude 2) responses 3) actions ... therefore resetting and reprioritizing is how I get through the day - often times in 3-5 minute increments... what's the next best thing I can do for others and myself in the next 3 minutes that is on trajectory of GOOD? and then do that - breathe deeply, focus, start again and then again ... baby steps... and every day or every hour looks a bit different. From a previous 'ultra planner' standpoint, it's beyond challenging. Words do not begin to describe. Doing the best I can where I am with what I have (quote attributed to Pres. Teddy Roosevelt) and continuing to reset and not give up has been most helpful... There are some options that make it 'better' rather than worse, yet nothing has worked fully nor sustainably...YET... I continue to read and follow the scientific literature with scrutiny. I intentionally give things a trial in a step-wise fashion with constant and ever-changing modifications in attempts to make it through the hour, day, week...
It's certainly 'better' than the beginning, yet it took over a year to be able to walk without severe tachycardia and/or dizziness and/or falling down...it all takes time and attention and intentional practice to improve where able. I haven't had a pain free, full body spasm free, or headache free day. My joints are trashed and I have new diagnosis of many kinds across several specialties. It has affected every system - heart, lungs, GI, etc. etc. I have been actively seeking treatments, trying everything that has a bit of evidence and some things that do not, all while practicing everything from brain rehab (mostly mimicking what Stroke rehab entails), PT, OT, breath work, paced work/life scheduling and full revamp of what life is and how I can participate in it... I deeply rely on my faith and faith illuminated by reason. My current 'self care'/'health' regimen takes me at least 3.5 hrs throughout the day. Some days are better than others. I'm grateful to be able to do things with my kids and husband most of the time on most days now, be functional and back to above average to excellent at work and some semblance of 'normal' for those looking from outside. Yet, it's terrible -- I hear and appreciate what you are experiencing!! I appreciate the dialogue and hope for all the best for you and all of us going through this. I recommend it's worth pursuing options and seeing what may work for you!