Post-COVID Treatment Ideas

Did you find it was worth going to Mayo's at Rochester? Did it help you?

@ramsay, yes. It was the culmination of nearly a two year journey. I worked my way through many medical professionals in Charleston SC who although caring and very competent didn't know much at all about Long COVID. They did however know enough to take me on a journey of "what its not" and threw every test in the book at me. Figuratively speaking I 'stood in long lines' waiting for special Doctors and special tests. I finally went to Mayo Rochester in August '23 and put a plan together based on my journey experiences and Mayo's 2 year old Long COVID program (Peacock). Long story short 2 months into that plan my symptoms are breaking up. The plan is multi faceted and I can't point to any one thing, but I am getting better and look forward to Long COVID being a memory.

@gnornoctur thanks for tip on Visible. I am going to try it.

I also sent you a PM, but I do not think you have long covid as long covid is not a formal diagnosis and is classified as being an extension of actually having covid. It's one thing for a Mayo doctor to say they have heard of other similar situations and for them to tell you you have long covid. If the latter was the case I would like to know the doctor's name as that is not consistent with what I've heard their stance to be. Of course that's not to say you do not suffer from similar symptoms after having a vaccine, as 3 weeks after being vaccinated I also suffered from symptoms similar to those of LC sufferers, but I do not have long covid. One big reason is that the vaccine can not give one covid and therefore one can not get long covid; but a vaccine can affect a reaction from the immune system. The other thing is that for clinical and scientific reasons LC clinics have required a positive test when admitting patients. The reason is that if there was something specific to those with "long covid" they needed to control the basis of what and who they were tracking. Some LC clinics have become more accommodating as some people had covid and been suffering from LC before they could have been approved for the test. The other thing is that clearly defining long covid is extremely difficult beyond it being a continuation of symptoms related to covid. All that puts the emphasis not on a diagnosis of LC but on dealing with symptoms and to do that seeking out doctors who are open-minded and persistent in treating them.

Is the 2 year Long Covid program available online? What is Peacock?
Was it hard to get seen at Mayo's?
Thanks for responding.

To the best of my experience and knowledge the program is a visit with many virtual appointments for prelim and follow up, in total it's about a 3 month program once you've visited. In my particular case Mayo performed a tilt table test and took 10 vials of blood so I doubt they have a virtual program, but no harm in asking.

Peacock is the name of their Long COVID program.

My Cardiologist here in South Carolina has relationships with Mayo and Vanderbilt and handled my referral. Mayo connected very quickly after he referred me.

Best to you in your recovery journey.

Thank you for your informative reply. I am glad to see you have gotten good treatment.

Can you give us some more info to this Long Covid program? Thanks

@nomeite the following link looks like the best way to learn more.
https://connect.mayoclinic.org/comment/957948/