Anyone been to the Mayo Long Covid Educational 2 Day visit recently?

Posted by bermuda8 @bermuda8, Oct 17 8:31am

Anyone been to the Mayo Long Covid Educational 2 Day visit recently? If so, please let us know how it went and what your thoughts on it are. Any input sincerely appreciated.

Interested in more discussions like this? Go to the Post-COVID Recovery & COVID-19 Support Group.

I wasn't able to tolerate ldn, unfortunately. I've tried so many things. Didn't know about online learning about LC; thanks for that.

REPLY
@bermuda8

Thanks - good info! Does Mayo recommend trying the LDN?

Jump to this post

yes, definitely. Not guaranteed but worth a try. they say it works for some.

REPLY

Hi- I didn’t know this existed. I couldn’t find anything about it searching. Do you mind sending a link or how to find it?

REPLY

Hi - Haven't seen a link to it - was offered it as part of the long covid program - might have to call and ask. I was only offered in person class in Jacksonville - sounds like others got to do a virtual class though - which I would prefer.

REPLY
@sailorsrwinners

I attended the Mayo two day LC classes in June. They were virtual appointments of 2-3 hours. I found them very informative with many suggestions for home care. I especially appreciated the information about what is currently known about the how the virus acts in the body. The science of it makes sense to me and enables me to understand what is happening in my own body. I did take the compounded LD Naltrexone for about a month but quit when I developed a rash. Now the dermatologist tells me it couldn't be the Naltrexone since the rash didn't go away when I quit. So I'll try it again for my lightheadedness especially.

Jump to this post

Thanks for this information. I think Long Covid patients can manage two hour virtual appointments much better than 4 hour ones. I would certainly recommend attending them after these changes were made because the information is very helpful and has helped me ask the right questions at medical appointments. For me the best part was the coaching segment (which was apart from the actual classes) as the coach reminded me of the recommendations, kept me focused on making the changes that I needed, and helped me develop some concrete steps towards achieving my goals.

REPLY
@michael239

Thanks for this information. I think Long Covid patients can manage two hour virtual appointments much better than 4 hour ones. I would certainly recommend attending them after these changes were made because the information is very helpful and has helped me ask the right questions at medical appointments. For me the best part was the coaching segment (which was apart from the actual classes) as the coach reminded me of the recommendations, kept me focused on making the changes that I needed, and helped me develop some concrete steps towards achieving my goals.

Jump to this post

Thanks good info - I am going ask again about a virtual option.

REPLY
@creeves0214

Hi- I didn’t know this existed. I couldn’t find anything about it searching. Do you mind sending a link or how to find it?

Jump to this post

Went to Rochester Mayo. I went to their website and clicked Request an Appointment. It walks you through their questions about the Long Covid symptoms and the care you've already tried. After they evaluated my answers I was offered care from their Integrative Health Dept.

REPLY
@sailorsrwinners

Went to Rochester Mayo. I went to their website and clicked Request an Appointment. It walks you through their questions about the Long Covid symptoms and the care you've already tried. After they evaluated my answers I was offered care from their Integrative Health Dept.

Jump to this post

Gotcha! Thx so much

REPLY

I was there at Mayo in Minnesota for 2 weeks of testing for Achalasia, esophageal dysfunction post Covid. I have had Covid 4 times now and diagnosed with long Covid with multiple organ issues as well as neurological deficits.
They referred me to the Covid Clinic but I was denied because it had been 2 years since my last infection.
HELLO, thats what long Covid is. I was very discouraged 😩

REPLY
@michael239

I attended in February and found the information to be useful. The format of the classes were atrocious as you attended a class for close to four straight hours on two successive days. Although I was able to pay attention during the first two hours of each class, I lost focus afterwards, During the last hour of each class, I felt that their words were washing over me like the water from a shower. The words, like the water, did not penetrate below the skin. After each class, I was unable to function for the rest of the day. After the second class, I had to stay in bed for two subsequent days. If they had sent the information to me and allowed me to process it at my own pace, I would have been able to process the information better and retained it longer. I really like Mayo Clinic in general, but I feel that they need to redesign these classes and ask for the input of people who suffer from Long Covid to design it better.

Jump to this post

Sorry to chuckle, but having LC for a few years, I could 100% relate to your reactions. While the program was created with the best of intentions, it was set up by those who have no idea how much energy and draining when the brain has to work. Two weeks ago I set up a couple of Excel workbooks for a friend. Two days later I'm back to sleeping 16+ hours in a 24 hour period, and this is ongoing. Additionally, I can no longer make it up my stairs without sitting down and resting, etc.

REPLY
Please sign in or register to post a reply.