I was recently diagnosed with post Covid syndrome. What to do?

Hi, So sorry that you are struggling with how to proceed. did you sign up for Mayo's post covid support program. I found their input very helpful and continue to try their suggestions. Also I have a primary care MD who didn't know how to manage post covid but she read all the results from Mayo's evaluation of me and now has begun to get on board learning how to proceed. good Luck!

Yes I did join the discussion and I am finding it helpful. Thank you!

I too was told by my primary doctor that I have CLH. I was in ICU with Covid in mid May 2024 and required a Pacemaker before I left. I received 5 day treatment with Paxlovid.
I have extreme fatigue, brain fog, loss of appetite, stomach/bowel issues, depression. Every day my cry about this. I had all my Covid shots.
My husband also tested positive for Covid but only had a cough and was tired. After 10 days he tested negative.
I’m thankful for this group and one other support group I’ve joined.
My primary doctor tells me I must wait this out… could be 6 months or longer.

I'm so sorry that upon receiving a diagnosis of long-COVID you did not receive a referral to an appropriate location or clinic or physician that can provide long-term care.
Start asking around. Where I live there is a neurologist who has previously worked in a long-COVID clinic. She no longer specializes in long-COVID but does see long COVID patients. In fact, posting on this forum that you are searching for someone who specializes in long-COVID might bring help. I hope you find someone whom you can see.

Cleveland Clinic has a Long-haulers ReCOVery Care Clinic.

https://my.clevelandclinic.org/departments/respiratory/depts/covid-19-recovery

I’m so sorry you’re going through this. I had Covid in December of 2022 and lost my taste and smell on day 2 of Covid, but I still don’t have it back and it’s July of 2024. I’ve had 4 Stellate Ganglion Block injections to try to regain it and it has only helped slightly where I get a stronger salty, sweet or bitter taste on my tongue, no actual flavors of anything. I feel your pain and wish you well on your health journey.

I’m in week 2 of the Italian research protocol hopefully to regain sense of smell lost from Spring 2020 using Glialia ( very fine PeaLut), alpha lipoic acid and smell training.

My heart aches for you. The timing of what each of us deals with varies greatly as do the symptoms we had. I was not hospitalized in late March 2023 after getting COVID for the first time, and yes, while fully vaxed. It has been one of the most difficult times.

I am grateful for this resources because I found, for the first time, others with similar symptoms after being told, even by a long-COVID clinic at a DC area top-notch hospital that "no one has told us 'that' one before"! Here is a place to read and talk it out.

Get the support you need and will need from your husband, other family and friends. It's the doubters who make it painful and here, there are no doubters.

Sending hope.

I got covid in March of last year from a fellow cyclist on a bike tour. I wasn't hospitalized but did have to go to the ER and Urgent Care a few times due to high BP, low O2, and my heart felt like it was trying to thump its way out of my chest. My main symptoms were cardiovascular and PEM so the cardiologist had me minimize exercise and rest a lot. I could do weights, but biking and walking were stalled. I'm 70 and collect autoimmune diseases, and it took 8 months for the LC to go away. I got a cold last Fall and the last bits of PEM ended with that (distracted immune system?).