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Anyone have any success with going to an LC clinic?
Post-COVID Recovery & COVID-19 | Last Active: Sep 6 12:48pm | Replies (76)Comment receiving replies
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 -
Replies to "Sounds like you had a different experience, which is great. Maybe my experience was terrible cause..."
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 . . .
Wow Theresa, I'm so sorry to hear about your experiences!
Getting sepsis from a coloscopy?! That's truly scary and could have been fatal. I don't believe that's common (well, I haven't actually looked that up...), but what absolutely rotten luck!
As far as your experience at Mayo clinic--which is very discouraging to hear about--I urge you to absolutely act on Colleen Young's suggestions.
I've had a few communications with her, and she strikes me as extremely level-headed, intelligent, and kind. DO follow up, that might give you some satisfaction as well. Hold their feet to the coals, if that's what you feel they deserve!
Best of luck, hope things improve, and I know this is a challenging illness.
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@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.