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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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Hi, Josh: Read your post with great interest. Not sure how much you've read on the LC site, but your story is not an unusual one. I was diagnosed in September of 2024 at Northwestern Memorial Hospital in Chicago, at the Long Covid Clinic. Contracted Covid on 3/17/23, symptoms developed in the following months and my PCP was completely in the dark (as most doctors were and continue to be) about the existence of, let alone treatment for LC. Typical symptoms (crushing fatigue; PEM easily triggered; brain fog, huge gaps in my cognition (I'm a psychotherapist and it helps to remember things...); a case of shingles followed by a rash that never leaves; peripheral neuropathy, hands and feet, extremely painful joints in both hands; loss of balance and strength, followed by deconditioning, of course; blurry vision; anxiety and sleep problems when exhausted... all the usual. It took me a year to get the appointment at NWMH, and it wasn't very helpful. Saw a couple of neurologists, lots of data was collected and a bit of testing done as well as blood; after two hours it was recommended that I get a sleep study (I sleep fine most of the time), and some cognitive rehab at the affiliated clinic; I did this; it was exhausting to get there (8 times) and essentially a waste of time... geared toward brain injured patients and pretty basic stuff. Also, a drug is being tested at NWMH, Amantadine, very little research showing effectiveness for LC; though it causes a bump in energy, people report that is followed by a crash and then many report jitteriness/sleep disruption, so I decided against it. Most of the reviews of the clinic say the same thing. It seems to be essentially a research project, the patients are the subjects, no real treatments offered. No follow up visits were offered; I have stayed in touch virtually with a PA there to see if anything promising is developed. Some clinics get better reviews but so far I haven't heard of any that are really useful, although Mayo may be better. I too have gone through stages and keep a journal; I'm into part IV, "Acceptance without resignation," and continue to do a lot of research (AI helps now) into what's new. We're getting closer to knowing what might be causing LC symptoms, and therefore developing research approaches that may lead to clinical treatments, but it looks like it'll be a long time coming. Research money as you know, is not flowing. Everyone works out their own path to recovery; some have PCPs who are smart and helpful (and don't gaslight us) and treat symptoms when they can. Some of us are avoiding doctors right now (unfortunately, snake oil salesmen are proliferating and desperate people are forking over a lot of dough for unproven stuff). Many of us are devising our own treatment plans. Mine include vitamins; Buddhist practice; sleeping nine hours most nights; reading a lot (favorite book is "How to Be Sick" by Toni Bernhard), and large daily doses of music, journaling, reaching out to others when I have the energy with no expectation of real understanding; hanging out with a very supportive spouse; watering the plants and walking with Nordic poles whenever I have the energy. Increasing exercise time as I can to ward off further deconditionig and eating very carefully to mitigate the weight gain that goes with less movement and regular support from the Mayo group and the monthly Zoom support group of the LC clinic at NWMH. The neurologist who heads that clinic told us recently in a meeting: "Most people get better; we don't know why... maybe they eat more peanut butter." So... they are really in the dark. My suggestion...don't lose hope, and keep coming back.
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2 ReactionsFirst of all, I’m so sorry you’re suffering. Second, did you ever take a Covid test to confirm if you actually had Covid? I’ve been a Long Covid sufferer since December of 2022 and it’s going on 3 years without taste or smell and if I overdo it, I have body tremors. I did have more symptoms like feeling like I was on a boat, stuttering speech, terrible brain fog, which I still have occasionally and bad headaches, which I still get, also occasionally. I saw a neurologist at the Long Covid Clinic at Northwestern Chicago, Dr. Koralnik, who told me that I will never get my taste or smell back. Just like that he said it and didn’t bat an eye! Evil, he is! I left his office crying and angry and without any hope for healing. What we all need is kindness, compassion and someone who actually cares. I’m hanging in there, but it’s not easy! Wishing you all the best.
I went to Mayo in Jacksonville at the end of 2024. Have had LC for 2 yrs now. At that time they believed LC is a neurological problem and basically gave you several things to try for symptoms but they really had no answers. Everyone there was nice but zero progress. I read on this forum that the LC program they had was cancelled this year.
Hi Josh!
I'm so sorry you are dealing with this. Pretty much all of us here can relate to your frustrations. I won't strain your mental focus by telling you my whole story - anyway it would strain mine too . . .
I ended up going to Mayo's LC Clinic. It took several months to actually get in, but it was absolutely worth the wait. (I figured I was going to be sitting there anyway, so I might as well be waiting while I was sitting . . . .) They know as much about LC as pretty much anyone else around. The doctor who met with me, Dr. Grach, specializes in dealing with the kind of things we face. She wrote up a document about 16 pages long, summarizing all the most current treatment options for various symptoms and symptom groupings. (The intent of the document is that you take it back to your local doctor and tell them about her findings and recommendations, and together you and your doctor work out a plan. ) She also recommended I go through their 8-hour class on LC and the post-class consultations with a wellness coach and the nurses. This was also very valuable in giving me everyday strategies to cope with and minimize my symptoms. If the class has been all there was, it would have felt patronizing, but in conjunction with the many recommendations for medicines and supplements, it was helpful.
She also recommended additional testing and meeting with several specialists at Mayo. The most helpful was a neurologist who also specializes in LC/ autonomic dysfunction/ chronic fatigue/ neuropathy. The neurologist was able to correctly diagnose what was going on with my autonomic dysfunction, and that helped the physical therapist I was seeing locally know how to help. That doctor also gave me additional recommendations to help with some of the issues she discovered in testing and in talking with me.
I've also participated in a number of Mayo and Mayo- connected studies. I'll be honest - I don't think the studies themselves will help you. They are pretty much trying anything any researcher thinks will work, and most of the studies are placebo-controlled, so you might go through the whole study process and end up with the placebo. In my opinion, having done both, I think at this point in your journey you're better off trying to get into the Mayo LC Clinic. In my own case, I was finding that though my local doctors were very kind and caring and sympathetic, they really had no idea what to do for me. When I went to Mayo and came back with a plan, they were more than happy to help me try the different recommendations and see what worked for me. (Oh, and in case you are wondering, I live in the Denver area. I am nowhere near Mayo and it was a royal pain having to go there - but it was worth it.)
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3 Reactions@homemarcy Thanks for this... it sounds as if your experience with the Mayo clinic was very different than mine at Northwestern in Chicago. If you care to share any further info about recommendations, it would be helpful Glad to hear a success story... and that you've found caring professionals and gotten some help and improvement. Gives me hope ...
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1 ReactionThere are several clinical trials currently underway or recruiting at Mayo Clinic related to Covid and long Covid. Here is a listing of available trials using the search term "covid"
https://www.mayo.edu/research/clinical-trials/search-results
You can search using other terms here: https://www.mayo.edu/research/clinical-trials
You can also contact research to ask questions about eligibility and availabiliyt
Non-cancer clinical studies questions
Phone: 800-664-4542 (toll-free)
The Mayo research team can answer questions, discuss your needs and help locate research studies that match your interests. They can also provide interpreter services for non-English-speaking patients.
@colleenyoung Can you provide info on how to get into the Mayo Long Covid Clinic? I've forgotten now exactly how I got the link to the application . . . It was months ago and my brain fog . . .
Man my heart goes out to you! I’ve had my own struggles! I finally got in with a functional med doc which I recommend. I also did a parasite cleanse the last time I got Covid I’ve had it 3 times and I had two vaccine s and had a reaction! Now company has drops for parasite cleanse , your looking for black walnut and wormwood ingredients. I did that after my last Covid because I was so fatigued and my healing touch practitioner told me to do a pariste cleanse. Just recently officially diagnosed with long Covid, also do a antibodies test for Epstein Barr , Covid awakens dormant viruses and I knew I had mono back in 1992, well low and behold it was off the charts so doc diagnosed me long Covid my spike protien was 5001 , and chronic Epstein Barr. Just started low dose naltrexone, but when I see her in feb we are going to talk about parasite cleanse because I know I need one and she said she has a good one but wants to wait till I see her again .good luck! It’s so sad I. Extremely intuitive ! This virus was unleashed on us on purpose ! And they are experimenting with bio weapons, oh and stress will make worse try some yoga it has help me .