Anyone have any success with going to an LC clinic?

I'm in my fourth year with Long Covid - I have been going to Stanford's Long Covid Clinic and have been very disappointed - Pleasant docs but offered no help - Tried Naltrexone which helped nothing - I read a book by Dr. Carla Kuon from the Long Covid Clinic at UCSF in Emeryville, CA entitled The Long Covid Solution: A holistic integrative approach to Post-Viral Recovery - It is dizzying to read - So much information with lots of recommended supplements etc - I'm still combing through it to see what I might feel would benefit me - I won't take everything she recommends - A doctor friend recommended Mayo Clinic's Long Covid Clinic - His brother went there and said he got some help, but I haven't been able to connect with him yet to get the specifics

I have been at the Long Covid and ME/CFS clinic at Stanford University for the last two years. It has been life changing ... currently on four medications (Naltrexone, Abilify, Colchicine and Hydroxychloroquine) that have dramatically reduced fatigue, headaches and other symptoms. Staff at the clinic are very nice and caring.

As far as I know, there is no way to get rid of the spike protein. Yet.

@theressa None of this has been my experience with the Mayo LC program.

1) I'm a woman so can't speak to this first issue, but I didn't see any evidence that only women were being treated.
2) I did not meet with a psychologist. I met with an M.D. who specializes in treating LC, ME/CFS, fibromyalgia, and POTS, in their Integrative Medicine and Health specialty group. This doctor has advanced training from the Bateman Horne Center of Excellence for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) and Fibromyalgia. She spent over an hour with me and my husband, making notes and asking questions.
3) She recommended I see several specialists at Mayo and made referrals, particularly to a neurologist (I was already seeing a cardiologist there) and a gastroenterologist. The neurologist has ordered testing, including autonomic testing, sweat testing, a brain MRI, and neuropsych testing. She has also helped me with orthostatic/autonomic symptoms, provided a correct diagnosis of PPPD, referred me to their PT dept for treatment of the orthostatic and PPPD symptoms, and recommended ways to treat the cerebral small vessel disease and sweat issues. And she is scheduling follow-up visits with me.
4) I was told in advance about the tests I would be given.
5 and 6) Mayo's Integrative Medicine and Health group gives you a flyer in advance telling you that their job is to help you and your doctor(s) figure out what is wrong and how to help. They point out ahead of time that they will provide help with diagnosis and treatment options, but your local doctor has to handle the actual treatment and follow-up. The doctor wrote me a 12-page report in tiny print, addressing all the different issues I was dealing with (including some cardiac and gastric issues that were specific to me), and recommending many different treatment options for my doctors to consider and try.

They also provide 6 virtual visits with a LC wellness coach whose focus is helping you learn to live with chronic illness and improve your quality of life, and 3 virtual visits with a LC-specific nurse to handle follow-up, answer any questions or concerns you may have, and recommend continuing courses of action.

I have been super-happy with what I've gained from being part of Mayo's LC program. I've gotten the referrals I needed, and my doctors locally have taken the reports from the LC doctor and the Mayo doctors she referred me to, and have been able to use those recommendations to treat me. I highly recommend pursuing Mayo's LC clinic.

I've also worked with the LC clinic at my local university hospital, and I feel like Mayo was much more helpful. The one benefit I've had from the local clinic is that they have a physical therapist who specializes in treating LC patients, and she has been really helpful. But other than that, Mayo's LC clinic was much more helpful, despite being 12 hours away, and despite taking several months to get into.

Sounds like you had a different experience, which is great. Maybe my experience was terrible cause I am Black and it is proven that Black Americans are treated differently and worse than White Americans when receiving healthcare.
The Mayo neurologist I saw didn’t order any tests and complained that the medications that the lc clinic put me on were incorrect and causing my problems. He lectured me on the medications.
The gastroenterologist told me to take Metamucil 3 times a day and to have a colonoscopy. The Mayo colonoscopy gave me
Sepsis and I almost died. I was in the ER and local hospital within 12 hrs of the Mayo colonoscopy. My experience with Rochester Mayo was terrible. The insurance company had to assign a nurse to make sure that I got better care after I had sepsis. I couldn’t find a doctor, (mine had moved) so I paid $3,000 out of my pocket for concierge medical care.
Also, the research paper that Mayo doctors wrote about long covid is chauvinistic and blames women with long covid for having long covid.
The virtual appt with the psychologist was also troubling. They told me to use google to find a therapist. There was no follow up from Mayo.

PT also lectured me that I needed to get together with family. My family is 2,000 miles and I have to pay for flight, food, hotel, rental car, etc. to see them. I would love to see them more often, but it isn’t realistic. She didn’t even ask me if I had family nearby.

When did you participate in the Mayo LC program? What city did you participate in?

I am sincerely glad that you found the program to be helpful.

Warmest regards -

@theressa, at Mayo Clinic, there are several specialty clinics, like the long Covid clinic, EDS Clinic, Fibromyalgia Clinic, Pain Rehab Center and others, that evaluate, diagnose, and outline care plans for patients to follow at home. For long Covid, people experiencing sequelae of COVID-19 work with a team of physicians, nurses, subspecialists, and integrative medicine experts to assess, treat when necessary, and assist with improving overall functioning and quality of life.

I'm sorry to hear that your experience fell short of your expectations. Please be assured that Mayo Clinic would want you to feel comfortable and confident about your care and your time at Mayo. I’d encourage you to share your experience with the Office of Patient Experience
https://www.mayoclinic.org/about-mayo-clinic/patient-experience
Phone: 844-544-0036 (toll-free)
Email: opx@mayo.edu

Staff are available to discuss comments or concerns you may have regarding communication and coordination with local care. Your experience sounds like something Mayo Clinic would want to act upon.

Thank you. I did follow up with patient exp about the colonoscopy and they said that the instructions which, are handed to patients, state that patients are to go to the hospital if they have a fever over 100.x. My temp was 104 and my spouse told me to take Tylenol and go back to bed. Mayo patient experience said that if I didn’t go to the hospital when I had a fever post the colonoscopy (it was awful prepping in a hotel, I will never do that again), it was my fault. It was my responsibility to read the Mayo instructions post a colonoscopy.
Patient experience was curt.
Thank goodness I didn’t listen to my spouse and I went to the hospital.
Please delete my comments about my experience at the lc clinic. Hopefully some people find it valuable.
I can’t delete my comments.

Wow! I'm so sorry you had such a terrible experience! I've had nothing but positive experiences with Mayo Rochester, from cardiology to the LC Clinic to neurology to everything else . . . . My experience was fairly recent - I talked with the LC nurse on January 30 and saw the LC doctor on March 24 (2025). They told me to plan on staying the whole week, which I did. They got me in with an autonomic neurologist the next day, and she was able to get me in with PT the same week.

Oh! I forgot to mention the LC Clinic also does an 8-hour virtual class (over 2 days) with LC nurses who teach how to live with LC. They take our situation very seriously and offer solid help in many different ways of coping.

Getting in with gastroenterology was difficult - they put in the referral when I talked to the LC nurse initially at the end of January, and I finally got an offer for an appointment on June 13 (on Friday, for an appointment Monday morning). I dropped everything and flew out. I didn't try to do any gastroenterology procedures there, but the doctor correctly diagnosed that I wasn't having gastroparesis, but dyspepsia with delayed gastric emptying, and he gave good counsel for treating that as well as the microscopic colitis I've had for years. My gastroenterologist here is taking that counsel seriously and I'm satisfied.

Getting in with neuropsych testing was also tough, and I only just did that two weeks ago, at the end of August. But the doctor was kind and knowledgeable and listened really well, and they did a whole bunch of testing and gave me a very thorough report.

But because of the LC clinic, I've been at Mayo 5 times since February. I'm hopeful I won't have to go back any time soon, but I'm very thankful for the help and support they've given me. I know they've made some significant changes in the program in the last year or two, so maybe that's why my experience was different? When did you go through this?

Again, I'm terribly sorry you had so much trouble. I hope you have found support from doctors in your area . . .

I went to the Mayo Jacksonville program about a year ago (going on 2 yrs with LC). Met with LC Dr who did a few blood tests and a psychologist. I had already had many tests from referrals from my primary (Cardiologist, Neurologist, ENT, etc.), At this point a LC diagnosis is just basically ruling every thing else out. I was diagnosed with LC at Mayo but they really didn't have any answers beyond "retraining your brain, meditation and pacing yourself etc. and a few other things to try (LDN etc) mentioned on here to treat symptoms. Maybe one day they will figure this out to help us all.

I went to the long covid clinic at VANDERBILT UNIVERSITY. The woman who interviewed me was an internist on the L C team. She wasvery thorough and put me on ld Naltraxone, Allegra, and Pepsid. SHEalso referred me to cardiology, neurology (who referred me for neuropsychological testing, to the movement disorders clinic, and for an EMG on mylegs, and a brain MRI), and rheumatology ( where I was diagnosed with RA). I was already seeing a gastroenterologist with follow up by an NP. I am still going to doctors many times a week but all of them are accepting of the LC diagnosis, or if they are not, they refer me to check out what they think it is. I think I have benefitted greatly from the care I’ve received. And I feel thoroughly examined. The LC Clinic also has a very helpful 16-week support and learning group.