I’m being interviewed by NBC Chicago on long Covid this week. Help

Thank you for participating and sharing your experience. One issue for me is that any hospitals that have post Covid clinics do no appear to be covered by insurance. Since this disease often has very serious consequences relating to employment and income this is something that should be addressed with the medical community and insurance companies.

How did your interview go? I missed it as we were in Mexico, but wondering if you learned anything new? I lost my taste/smell with Covid in December of 2022. I have also had 7 Stellate Ganglion Block Injections and it’s March 17, 2025 and I still don’t have it back. It did however, help with my anxiety.
Looking forward to your response.

Hi guys- NBC, the Chicago Tribune, and a San Diego NPR interview are "on hold." The day before I was to be interviewed, a major news event interrupted the news cycle and has remained in headlines. I'm happy to help if called to do so.

I've seen quite a few more doctors and nurses across multiple disciplines for Long Covid research and upcoming clinical trials. I've read some of these stories, and some have joined this message board community. Almost without exception, it leads to them being in tears. A few have Long Covid themselves and other just want works towards solutions. I was walked from one building to another at UIC for my 36-month RECOVER check-in. A younger researcher working on the data processing side escorted me and I shared how much she was helping people like us. She had no idea how working on her piece of the puzzle is so important to so many.

The head of the Long Covid program there wanted to speak with me and I was invited to be on some sort of patient research advisory board. I'd commit to some organized time in meetings twice a week. I need to share some more information formally in regards to my professional background; I can bring a lot of skills to help, and it's not paid. While it's not on TV, your voices are helping me get them heard in an advisory board. I'll keep you updated. FYI- my symptoms, physical metrics, and other measurements continue to decline. But as I said to the staff, and they agree, we're all in this together.

NBC did one segment at the office I go to for some of my RECOVER programs. They did a nice job sharing this woman's story and research:
https://www.nbcchicago.com/top-videos-home/suburban-hospital-in-clinical-trial-for-long-covid-cure/3700009/
They've done some other nice educational pieces over the years. I'm sharing this as an FYI- I have no vested interest in NBC beyond being happy to share my story if asked.
https://www.nbcchicago.com/tag/covid-illinois/

I know that when I am part of observational research or clinical studies, the research group is spending a lot of grant money and funds to do their research on participants, and it seems odd that I'll get paid a stipend from them to going for a visit, them analyzing things like a bunch of bloodwork today, and I get the results. No insurance involved.

If there's something in the bloodwork I don't like, I can chose to see my own doctor or another specialist- then it is up to my insurance to pay.

As to the rest, that gets into the classification of long covid at different insurance carriers. That gets into medical coding and all sorts of red tape that seem related to whether if/how someone is "officially diagnosed" and how the insurance companies take that info. My perspective is that long covid is still relatively new and progress is being made to define it for different entities.

Apologies if I already replied. I've had a long couple of weeks and am completely drained and fatigued.

I 100% feel the same way. Naturally, my mom is concerned about my long covid, can't really understand what it's like to loose mental capabilities and be exhausted. I've told others to go to a couple of specific web sites to learn more about it. Beyond that, there's nothing more I can report. if something is new and there's a breakthrough, I'll let her know.

Her and others know that if I say I need them to stop talking for a moment, turn down the TV, or if I need to leave some gathering, it's literally because I have no option. All the stimuli and activity shuts me down.

In a recent post I mention it hasn't and may never be done because of priorities in the news. But other people carried the torch for covid and long covid for awareness days a couple of weeks ago, which makes me happy.

Thanks for the reminder on stellate ganglion block. Anyone can go to clinical trials.gov and see FDA-approved studies that have happened, are underway, or are recruiting- this is an NIH depository with formal protocols, recruitment criteria, and more. Search for any condition and you can see what's underway. I saw a couple on ganglia and other interesting things being explored around the world in research. Some may have research locations near you. Quite a few happen in Chicago and I talk with my doctor and then we review whether I should learn more. I've joined some and have a few biological samples of mine in the Mayo Clinic repository where good work is being done on my "contributions" of "biological material" that I sent in a box!

Ive had my issues since 2020. I got.the Delta variant and it was hell for two weeks, but i was healing and doing fine until I got the vaccine. I didn't want it, but I was.pressured.by family and friends to get it. My doctors believe it was too close to being sick and caused my immune system to go into overdrive. I was the picture of Health. Had a personal trainer and did bikram yoga 5 days a week. I had joint issues and can barely work. Some.days are better than others but all not good and especially compared to what I was. This many years later, I still occasionally lose sense if smell and will only smell burning when I'm having inflammation issues.
My lymph nodes are swollen in my neck and arm pits. I've had multiple ultrasounds in my neck and they just say its swollen lymph nodes. I also have a hard moveable lump next to my throat. Irrgular heart beat as well, easily out of breath and did all tests including heart cath with no answers. My vision gets bury, I have worsening tinnitus and joint pain like I'm 80.
Ive been in the hospital three times and grt no answers. I'm at a loss. My life has completely changed and I can't get help. I'm 55.

I’ve been overloading not pacing well. My mucous is behaving I’m the same, then it goes lower and my vagus nerve gets inflamed and I hiccup. Could be a couple of weeks to cool down. We do need help

Thankyou on behalf of all LHCovid sufferers. I had covid in Nov 2020. Recovery was in January 2021 thank God I was breathing better, but, the long term effects are still here. High pitch in my head,a smell of burning ans loss of taste from time to time. My doctor sent a nurse, social worker and physical therapist to help in my recovery at home🙏🙏🙏🙏

I am impressed that your doctor sent all these people to your home. I can get PT but no nurses. Maybe it was the time.