Drug-Trial on A long dance with Rona

Mayo Clinic Long COVID Program: Insurance Barriers and Leaving the Scripps Trial

Wed, 06 May 2026 00:00:00 +0000

Mayo Clinic Long COVID Program: Insurance Only Covered 3 Days

Turns out I wasn’t actually at the Long Covid program at the Mayo Clinic but with an internist. My insurance only covered 3 days after I begged them numerous times that yes, I am dying, and they aren’t fixing me, just diagnosing me with more and more severe conditions. Thanks for that—the Mayo wanted 6 months to a year. Now I’m back to nearly bedbound, and I can’t work or drive myself.

The 3 days were just about like this, mind you; I’m 44 (still damn Roosevelt, though):

Teddy Roosevelt - still damn Roosevelt though

I had to pay for a follow-up with an internist out of pocket because it was too much for insurance to try to get it covered for more than 3 days. The Mayo wanted 6 months to 1 year to figure it out. My PCP wanted them to treat me. My insurance squashed this because it was inconvenient for them to do anything. All after I had several meltdowns about my deteriorating condition.

Autonomic nervous system dysfunction is a helluva ride, but I didn’t get to do that ride at Mayo (unless you count the sweat test; holy cow was that intense). The cardiologists I met were pretty good; I chatted with them about the cardiac remodeling happening with my heart, metabolic syndrome, and the HTN. They also noticed an adrenal lab slightly off.

Anyway, some silver lining. I did get into the Long Covid program in July. We’ll see what state my health is in then, and what insurance decides.

Falling Behind: Long COVID Care Coordination Gaps

My long COVID playlist keeps getting bigger. And I still have double vision. So much for moving past that borderline awful song (sorry, Foreigner).

But let’s talk about the latest addition. Def Leppard, Two Steps Behind.

Def Leppard - Two Steps Behind

My duct-taped care team is always behind me. They don’t try to meet me ahead but wait two or more steps behind. It’s not a bad thing, I suppose; at least I have insurance still, for now.

Upcoming Long COVID Treatments and Appointments

I have surgery coming up for a PLF repair (I didn’t believe my original care team and kept pushing for answers)
- I’m hoping for a lot of relief, but not holding my breath
I’m in the Long Covid program at Mayo Clinic in July 2026, finally
I’m getting a new neurologist in September and some assessments and scans in July, concurrently with the Mayo.

Leaving the Scripps Drug Trial, Starting Emgality for Migraines

I am separated from my immediate family, and living with family that is as supportive as they can be. I can’t keep up a trial, and coordinate my own care. I’m nearly bedbound again. Likewise, I had to let this go. I hope the research continues to progress in the treatment of Long Covid. Not only that, but I would have been a great fit for the drug itself (no idea if I actually got it) with my new metabolic syndrome (despite not having a lifestyle that doesn’t fit it at all).

That said, my ENT has put me on Emgality for migraines. So, I’m trading one injection for another.

PLF Surgery Update Coming Next

Hopefully I have good news to share on the PLF surgery coming up. I was able to get cleared pre-op, barely, with all the health stuff I have going on. It took 18 months, but I have a surgery in sight finally.

I intend to put my treatments up here soon too. It’s such a cluster; it’s difficult to tell. What works for one may worsen things for another. Also, new symptoms like trouble swallowing, worsening vision, and vomiting and heaving. I’m still walking with a cane for the most part and slowing down.

The Mental Health Toll of Chronic Illness

I don’t have the bandwidth for the whole bit, but this has been the most difficult thing I’ve ever encountered. I have never felt more alone. I started to give up and run away. Likewise, I confessed to mistakes I’ve made so people would leave me, only to realize I left them. I did a lot of damage and hurt numerous people who love and care for me.

I spent most of my life running toward danger. When you don’t know what it is, it burns the mind. My autonomic nervous system has yet to find an exit, and it’s killing me with metabolic syndrome, low quality of life, chronic fatigue, and pain, all getting worse each day.

Getting help was hard, but worth doing. I don’t know what tomorrow brings, but I know I made some terrible mistakes I hope I get to make up for, if I can only get better.

End of year update 📋

Sat, 10 Jan 2026 00:00:00 +0000

Where have I been?

Whew, 2025 is over, and I have been neglecting things here. My apologies! I am still working full time, and the holidays have been crazy. I managed to get through Thanksgiving masking, Christmas Eve and Day but ended up in the ER on December 25th (more on that later).

Drug Trial Update

I started either a placebo or tirzepatide on January 6th, 2026. There are a combination of emotions: scared, excited, worried about side effects, or, if I get the placebo. No matter what happens, unless the side effects are intense, I will take the weekly injections for the purpose of being a participant.

I will not be updating much about this for the remainder of the trial unless something drastic changes; after all, it is a double-blind trial. I’m really the perfect candidate for this. Adderall never works the same day to day (sometimes it suppresses appetite more often), and mirtazapine makes me binge eat occasionally (and now Hayley Williams singing Mirtazapine is stuck in my head 😄). No idea if it is tirzepatide, placebo, or the meds I’ve been on!

December ER visit

I did not mention this here yet; I have been back to ENT for ongoing tinnitus in my left ear and mild hearing loss. It is a swooshing sound and is triggered both when I look right and also at random. Additionally, my last audiology visit back in the early days of long covid picked up pretty minor unilateral hearing loss.

I had a weird episode where the tinnitus was so relentless, and I got pretty dizzy, and overall symptoms were changing (has never happened before). I was leaning toward waiting it out, and of course, in hindsight, that would have been fine—but not something to mess around with (thanks, wife). Furthermore, I made it 8 months without a visit to the ER, which kind of bums me out going back—but it’s worthwhile, even though we all know where this is going.

The ER doctor was interested in post-COVID issues and did a few out-of-band tests (after asking) for them to really understand my symptoms. While I appreciated that they were understanding and offered to help in any way they could, they were like the 8th doctor I’ve seen who, after doing some vision tests, said, “Man, that’s wild. You have divergence, double vision, and are cross-eyed—it’s like your brain just won’t let your eyes track well at all.” That’s cool that you all see and confirm these problems, but I actually want them fixed; it’s been over a year 🥹

I had a head CT with and without contrast and labs before (to make sure my body can properly expel the radiation from it). I have never had a CT in my life before this; it was impressive how quick it was. The warm peed your pants feeling wasn’t too bad with the contrast and faded pretty quickly.

In conclusion

The radiologist compiled the report and sent it to the ER doctor. Nothing notable other than normal wear and tear, arthritis of the neck (I’m 43; this is not normal), and mild congenital deformities that shouldn’t cause major pain or issues like I’m experiencing. Onward we go.

What a crash feels like these days

I have been having crashes every few weeks all through last year. Lately they haven’t been too brutal. But when I forget to take medications, they hit hard. For example, I didn’t take my mirtazapine (or Remeron, or as I call it, Car Ramrod), guanfacine, or glycine last night. I didn’t really sleep at all—severe rebound insomnia. I felt like crap and like I was nearing zero most of the following day. Pulled it mostly together with a short nap. It’s crazy and depressing to think that my body gets so messed up without medications. I wish it didn’t have to be like this.

The moral of the story is to make crashes less severe. Take your meds. Nighttime meds are harder for me; my stimulant has worn off, and I always have a million things to do before I go to bed. It’s been hell to live life normally before this, and now it’s all around worse.

I hope to get better at updating this more frequently. Instead of scrolling social media over and over again (thanks, Adderall!). Here seems to be a much better place for my mind to be.

Scripps GLP-1 drug trial 💊

Sat, 29 Nov 2025 00:00:00 +0000

Initial Thoughts

As there is no FDA-approved treatment for long Covid, this is a bit of a milestone, now that we’re more than six years into this. While chronic fatigue is the primary objective, they are also tracking a handful of other symptoms and their reactions to the drug. For more information if you are interested in reading about it or joining the trial, go here: https://longcovid.scripps.edu

It has been six years for many suffering from long Covid with merely treating our symptoms as best they can. This has been my experience for months, typically bringing in medical journals to my doctors and saying, Hey, this could help and isn’t likely to hurt. One example of this is the Yale study on Guanfacine and NAC to treat brain fog (https://www.yalemedicine.org/news/long-covid-brain-fog-treatment).

The blind drug trial is for a GLP-1, tirzepatide, or a placebo. Both play a critical part of the process for research. For me, this means a different approach to treatment. Historically, I would try something for 1 month (try very hard to only change one thing at a time!), and either continue on after or abandon the treatment. I decided to go ahead with this trial after being approved, with the understanding that I will continue treatment until the study’s end or if the side effects become too severe.

What is a GLP-1 (Glucagon-like peptide-1)?

Rough estimates are that 1 in 8 Americans is on a GLP-1 drug. It is approved to treat type 2 diabetes and can aid in weight loss. More info on the history and science here: https://en.wikipedia.org/wiki/Glucagon-like_peptide-1.

There are some bodily regulatory improvements that may occur to various systems in the body, which could benefit long covid patients.

I know a few people on this personally for weight loss and diabetes management. I am a little concerned about the side effects, such as GI upset and weight loss, myself. Likewise, I am thinking big picture, though, and am going into it with an open mind, whether it is a placebo or medication.

Designed with long covid sufferers in mind

The driver behind the drug trial is Julia Moore Vogel, who has been suffering herself from long Covid. Everything is done via telehealth and shipping. Self blood draws are optional, which I intend to do. As someone with high fatigue from long covid, it is something that I appreciate—and I’m sure many others who are more severe would too.

Final thoughts

I have not yet started the drug portion yet; however, the scale and wearable were sent after completing various surveys on the study portal. The package comes with directions and is relatively easy to set everything up. As it appears they support Fitbit,which I’ve already been using for pacing, I will use that wearable, along with their GE scale.

Even if it is the placebo, being a part of helping is huge for me. I hope that someday, there will be a treatment that hits some of the worst symptoms by more adequate means.

As this progresses, I will post updates here, under the tags #tirzepatide and #drug_trial