What are the best hospitals/university hospitals for autoimmune?

Posted by ericy210 @ericy210, May 13 8:24pm

Long Covid for two years keeps manifesting itself in autoimmune issues. Are there any well known places for top notch autoimmune treatment? I need someone to review how messed up my autoimmune system is and what to do so it doesn’t destroy me. I’ll fly anywhere and sell beloved guitars to fund it. Thanks

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Becky, Volunteer Mentor | @becsbuddy | May 13 10:46pm

@ericy210 I would recommend that you enter “ best hospitals for autoimmune diseases” into Google . I just tried it and lots of information came up. Too much to try to post here. You can probably find a doctor/hospital near you.
So you’ve had long covid for awhile and it manifests as autoimmune. Do you have a long covid clinic that you’ve been going to? What have those doctors said to you?

jeindc | @jeindc | May 14 9:19am

I wonder if there are yet "best hospitals" especially when autoimmune may be tied to COVID/Long Covid. I have an upcoming appointment w/ MedStar at Georgetown University and am being cautiously optimistic. A dear friend went to Mayo some years ago and was pleased w/ the testing and discussions they had and the treatment plan that their doctor in another state could manage.

Sometimes it feels so hopeless and like you, I think about what I could sell to manage to get to some place.

ericy210 | @ericy210 | May 14 7:45pm

In reply to @becsbuddy "@ericy210 I would recommend that you enter “ best hospitals for autoimmune diseases” into Google ...." + (show)

Thanks. I found some good ones and am willing to fly somewhere. I’ve been in Northwestern’s clinic program and the NIH long Covid through UIC for two years. I have hundreds of tests - neuro, blood, pulmonary, cardio. I’m having other autoimmune issues and need one person to look at all these issues and recommend a plan.

ericy210 | @ericy210 | May 14 7:49pm

In reply to @ericy210 "Thanks. I found some good ones and am willing to fly somewhere. I’ve been in Northwestern’s..." + (show)

The clinical stuff I’ve been in helped define Covid, qualify new testing for fda acceptance, and more. I’ve been on amantadine for a while, a drug they give people with brain injuries, Parkinson’s, MS, etc. they wanted me to do a 31 day paxlovid trial but I was having neck surgery and couldn’t do it. It just takes time for them to get funding, study approval, and too much academic political crap.

jeindc | @jeindc | May 15 10:18am

Thanks for the recommendation. I will look into the group.

elisabeth007 | @elisabeth007 | May 15 12:27pm

I would think you would want to look at the long term covid programs and research which ones are the strongest in auto immune specialization….just my thoughts.

oldkarl | @oldkarl | May 16 9:03am

Be careful. I went to Mayo 8 years ago for a three month diagnostic tour, and wasted about $10,000 of my own money) on a couple brief conversations and some off-the-cuff conversations, and one small surgical procedure. My fault for not pinning everything down before I went. oldkarl