Paxlovid as treatment/trial fails

Thanks for sharing. I have this feeling that Long COVID will be one of those things where even if the initiating event is the same (the COVID infection), the causes of the symptoms will be multifactorial, so some treatments might work for some people and not for others... So for example, Paxlovid may work for some people with Long COVID who still have active virus somewhere in their bodies (i.e. there are many cases of people continuing to test positive long after the acute illness has passed, who also have Long COVID), but maybe that doesn't impact others.

My original conditions were set off by a viral infection, so I'm curious if Paxlovid would help me because I felt great when I was on it for COVID. But it didn't prevent Long COVID for me.

And I know...that's all speculation.

I had POTS, central sensitivity syndrome, and an inflammatory arthritis as well as other chronic conditions that were set off by a viral infection. So I'm very, very familiar with the idea that a viral infection could set up an immune response and trigger all these symptoms: brain fog, chronic fatigue, exercise intolerance, GI symptoms, autoimmune conditions, etc. And now I have a Long COVID diagnosis because symptoms that I worked really hard to manage all of a sudden got worse and I developed other symptoms.

It's been very strange to me to see terms and conditions that were a part of my everyday life, like "post-exertion malaise," exercise intolerance, and brain fog--things that other providers and just sometimes people in general minimized or doubted or hadn't even heard of... Now the terms are so well known and everyone's up in arms about how there are few treatments and not enough help. It was always like this. When Long COVID cases started emerging, it just wasn't new to my doctor, PT, and me. If there's any silver lining to having these conditions and then getting thrown off course again by yet another virus, I guess it's that my care team was well-positioned to be able to help me because we're already familiar with the some of the treatment strategies.

I'm glad they're trialing Paxlovid as well as some other drugs and a graded exercise pacing strategy. It seems like there will literally and figuratively be a lot of trial and error.

Thank you, @emo for adding to the discussion. Yes, many of the symptoms are alike. It's also that many of the 'like' symptoms too have been dismissed by care providers as "all in your head" for too long. It depends on where one is and how long one has been in care for whatever the symptoms. Because my PCP retired in 2021, it's all new people who don't want to read 25 years of records or to spend time getting to know my capsulized version of me that might shed light.

Laughing - oh I am in reality old and in thinking old about this. I miss thorough, caring, investigative, non-managed-care care.

Haha, I too must be old, or an old soul, at least, in terms of expecting providers to be motivated to get to know the whole person and our history, problem solve, look into the literature, think out of the box, etc. Instead of: "Well the first line of treatment is ______. And the second line of treatment is _____." My eyes are involuntarily rolling as I write this because I could literally rattle off the typical suggestions for chronic pain/neuropathy/fibromyalgia/chronic fatigue, et al.

I too miss the "old school" approach to care. I'm facing this problem with my parents as they both need a new PCP because their current one is on autopilot and we need more help than that.

AND that is the issue too - as the population ages, the docs who cared for us either enter into managed care practices OR retire. When I was seeking a new PCP, I asked friends. ALL said they were in the same position - their docs were retiring. It is a crisis. And it's not being addressed. I am fortunate to live in a metropolitan area with lots of docs and hospitals and uni hospitals BUT they have consolidated so it's not better. Those who live in small towns where there is NO care for miles are in even worse shape. This all should be on the thoughts of politicians tho' at a Fed level, they have good care and maybe forget we all don't. (That was not a political statement; it's that many who could help, incl. corporations and their CEOs who could call attention, have care and shrug off the rest of us.) Back to work while I await learning if I can get an appt. on a day that I can get there!