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I am trying to get into Mayo for Long Covid

Posted by jenried73 @jenried73, May 24, 2023

I am trying to get into Mayo for long Covid since infection 10/20. Now I’m being told had to have had Covid in last 90 days or within 2 years. I tried to get in last year and was told I couldn’t go there due to where I live in WI. I am so unbelievably frustrated!!! I thought Mayo was supposed to help people when all other avenues have been exhausted?? I’ve seen all the specialists, had all the tests, done different therapies, paid out of pocket for a long Covid clinic near me. Any ideas or suggestions?

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edsdad69 | @edsdad69 | May 27, 2023

Sorry to hear that
They accepted me even after losing my job and having no insurance. It was more then a year after I had Covid pneumonia. Best thing that I could’ve done !
Wishing you the best

REPLY
1 reply
edsdad69 | @edsdad69 | May 27, 2023
In reply to @colleenyoung "@jenried73, this must be so frustrating. Unfortunately demand for the Long Covid or COVID Activity Rehabilitation..." + (show)
@colleenyoung

@jenried73, this must be so frustrating. Unfortunately demand for the Long Covid or COVID Activity Rehabilitation Program at Mayo Clinic remains high. Here are the requirements for acceptance into the COVID Activity Rehabilitation Program:
- Have a positive test antigen or PCR test
- Have had the positive test within 1-3 months
- Be 18 years old or older
- Be employed
- Reside within Minnesota
- Provide the name of your local primary care provider who will partner with Mayo Clinic experts
Read more here: https://connect.mayoclinic.org/blog/post-covid-recovery/tab/next-steps/

You can check for care near you here on the Survivor Corps website: https://www.survivorcorps.com/pccc

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None of that is true
I’m from Pennsylvania
Lost my job
Last tested positive over a year ago
Where did you get this information
I was just treated at the Mayo Clinic 3 weeks ago

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joanrond | @joanrond | May 28, 2023

My son had long covid for over 2 years - POTS and MECFS. Out of desperation he did hyperbaric chamber therapy. He is 80% back to normal and holding now for a month. He found a place that has medical grade chambers and is supervised by doctors - much cheaper than a hospital. I wish more people were aware of this. I don't know if it would benefit everyone but it certainly helped our son.

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joanrond | @joanrond | May 29, 2023
In reply to @edsdad69 "Sorry to hear that They accepted me even after losing my job and having no insurance...." + (show)
@edsdad69

Sorry to hear that
They accepted me even after losing my job and having no insurance. It was more then a year after I had Covid pneumonia. Best thing that I could’ve done !
Wishing you the best

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I'm glad it was the best thing you could have done. May I ask what they did for you and if it worked. Also, which clinic did you go to? Thank you very much.

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1 reply
edsdad69 | @edsdad69 | May 29, 2023
In reply to @joanrond "I'm glad it was the best thing you could have done. May I ask what they..." + (show)
@joanrond

I'm glad it was the best thing you could have done. May I ask what they did for you and if it worked. Also, which clinic did you go to? Thank you very much.

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The Mayo Clinic in Minnesota.
After seeing numerous doctors in Pennsylvania and being treated as if my illness was a lie, I think more than anything else they have given me hope. Along with meds and a regimen of therapy that now my primary physician and I can use fight this illness.
I truly hope you find what you need.

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1 reply
Mentor
Rachel, Volunteer Mentor | @rwinney | May 29, 2023

Hello @jenried73 - I understand your frustration. I was denied being seen at Mayo for my conditions and concluded that they must have felt they could not help me further than my local doctors. Now, some folks keep trying and do get accepted for acute reasons, but I tried a different avenue to help my chronic pain which was the Mayo Clinic Pain Rehabilitation Center. The PRC helps long COVID patients as well. Here is a video from the Florida Pain Rehab Center's Dr. Sletten presenting on Central Sensitization Syndrome. He talks about long COVID symptoms and how the Pain Rehabilitation Center helps -

Central Sensitization Syndrome (CSS) - Dr. Christopher Sletten:


I graduated the PRC 2 years ago. It was a life changing experience and I highly recommend giving it a try if all else has failed. Will you please let me know your thoughts on the video?

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1 reply
Moderator
Colleen Young, Connect Director | @colleenyoung | May 29, 2023
In reply to @edsdad69 "I live in Pennsylvania and suffering from long Covid symptoms for about 1 and a half..." + (show)
@edsdad69

I live in Pennsylvania and suffering from long Covid symptoms for about 1 and a half years. I’ve been to countless doctors and also a rehab close to me.
My wife found the rehab that is offered at Mayo in Minnesota. I waited 5 months to get into this hospital and I would do it again.
I was at the end of my rope, we have tried everything, seen every doctor, tried different meds. The Mayo Clinic in Minnesota, from the first person I spoke with ,they are just the best. They listened to my problems I having so that when I arrived they had a plan. Being from Pennsylvania they knew I wouldn’t be there for too long. They had me scheduled out for the first few days I was there and added new tests after seeing the results of the tests I had just taken.
They have given me hope that this is going to end !!
I am still fighting this thing but I’m better after being treated at the MAYO.

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@edsdad69, that's encouraging news. I know there is no silver bullet, but it sounds like you are on a healthy path to recovery.

Can you confirm, did you attend the
1. Pain Rehabilitation Center https://www.mayoclinic.org/departments-centers/pain-rehabilitation-center/sections/featured-programs/gnc-20481713
or
2. COVID Activity Rehabilitation Program https://connect.mayoclinic.org/blog/post-covid-recovery/tab/next-steps/#ch-tab-navigation
or the
3. Post-COVID-19 Care Clinic https://connect.mayoclinic.org/blog/post-covid-recovery/tab/next-steps/#ch-tab-navigation

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joanrond | @joanrond | May 29, 2023
In reply to @edsdad69 "The Mayo Clinic in Minnesota. After seeing numerous doctors in Pennsylvania and being treated as if..." + (show)
@edsdad69

The Mayo Clinic in Minnesota.
After seeing numerous doctors in Pennsylvania and being treated as if my illness was a lie, I think more than anything else they have given me hope. Along with meds and a regimen of therapy that now my primary physician and I can use fight this illness.
I truly hope you find what you need.

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Thank you. This long covid is frustrating and some of the medical community's response to it is disappointing and frustrating. Thank you for the tip about Minnesota.

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jenried73 | @jenried73 | May 29, 2023
In reply to @rwinney "Hello @jenried73 - I understand your frustration. I was denied being seen at Mayo for my..." + (show)
@rwinney

Hello @jenried73 - I understand your frustration. I was denied being seen at Mayo for my conditions and concluded that they must have felt they could not help me further than my local doctors. Now, some folks keep trying and do get accepted for acute reasons, but I tried a different avenue to help my chronic pain which was the Mayo Clinic Pain Rehabilitation Center. The PRC helps long COVID patients as well. Here is a video from the Florida Pain Rehab Center's Dr. Sletten presenting on Central Sensitization Syndrome. He talks about long COVID symptoms and how the Pain Rehabilitation Center helps -

Central Sensitization Syndrome (CSS) - Dr. Christopher Sletten:


I graduated the PRC 2 years ago. It was a life changing experience and I highly recommend giving it a try if all else has failed. Will you please let me know your thoughts on the video?

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Hi there! Yes I’ve seen this video so am also trying this avenue now as I do have chronic back pain as well as POTS, so I’m keeping my fingers crossed that perhaps maybe I can get in this program. Thank you!

REPLY
1 reply
Mentor
Rachel, Volunteer Mentor | @rwinney | May 30, 2023
In reply to @jenried73 "Hi there! Yes I’ve seen this video so am also trying this avenue now as I..." + (show)
@jenried73

Hi there! Yes I’ve seen this video so am also trying this avenue now as I do have chronic back pain as well as POTS, so I’m keeping my fingers crossed that perhaps maybe I can get in this program. Thank you!

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Oh, good, you will not be disappointed. Have you explored these conversations about the PRC?

Mayo Pain Rehabilitation Center (PRC) - What's Your Experience? -
- https://connect.mayoclinic.org/discussion/mayo-clinic-prc-whats-your-experience/

Mayo Pain Rehab Program: Signing off and my comeback afterwards -
- https://connect.mayoclinic.org/discussion/mayo-pain-rehabilitation-program/

Here is an overview of the rehabilitation programs Mayo offers and it's locations. You'll find a link to apply (if you have not already done so) and can choose your location.

- https://www.mayoclinic.org/departments-centers/pain-rehabilitation-center/sections/featured-programs/gnc-20481713

I attended Florida because I wanted warmer weather and palm trees! I live in NY, so I had to travel regardless. Which location is closest for you? Have you looked into insurance coverage yet? (Maybe I should have lead with that - wink, wink)

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