What Happened to Doctors?

I agree 100%! There is a clear yawning gap between our needs as LC patients and what the medical community is willing to do. I believe this gap would be best addressed by a multidisciplinary setting where patients could go and have our care centralized with appropriate supports instead of asking us to overcome our inherent biological limits and be our own advocate and care coordinator. This was done back in the day by FDR for Polio patients and makes so much sense for helping us to get back to our lives. However, since it hasn’t been done for post-viral illnesses, I doubt it’s feasible (we all likely would know about it since we all do a ton of research on our condition.). I’ve seen others on here have this idea too.

I think you’ve made a good point - it seems like you’re saying there is no accountability for ensuring we receive the right and appropriate care as there would be for attorneys (I used to be one). I would add that there are no controls to hold doctor’s liable for fulfilling their Hippocratic oath to meet a standard of care that would help us LC patients specifically.

I would also add that this lack of someone digging in to my illness and helping to develop a care plan specific to my needs is something I also found at Mayo. I know that there are tons of studies around the world using microscopic techniques to identify problems that were done well before I ever went there and I have to say I was disappointed that I was given a battery of “standard tests” - like a check the box exercise - and given a diagnosis that is vague with a long list of recommendations that may or may not help. This is specific to the specialty clinics as my neurologist and allergist there are caring enough to help me as best as they can. However, despite all that testing, I still don’t know what’s wrong with me. So, if Mayo is supposed to “solve the unsolvable,” people who go there for LC care are going to be disappointed.

In any event, let’s hope someone soon defines a standard of care that allows for ANSWERS that will hold the medical community accountable.

AMEN- My Doctor doesn't believe me....My heart felt like it was racing anytime I tried to do the smallest thing which then made it hard to breathe...then a panic attack set in - He literally asked me why I was depressed and what was going on at home to make me depressed.... OMGosh!

I love your rant. Your comparison to other professions is spot on.

I feel the medical profession has been exposed. Oz behind the curtain. In terms of public health, the CDC, and everyday doctors’ unwillingness to educate themselves about LC. It’s a joke, and the bottom line is money. The economy. Not you, and certainly not your wellbeing.

I’m lucky to be in a Post Covid Syndrome clinic at a major hospital in NYC. My LC doctor has openly told me that very, very little is known about the second phase of a covid viral infection (ie Long Covid.) Anyone who tells you they have an answer is wrong. Beware of snake oil salesmen out there, too. It will be at least a decade until what is happening to us will start to be understood.

For now, doctors must:
- Believe their patients. The stories I hear of LC sufferers being dismissed as “anxious” breaks my heart.
- Treat the symptoms. No, there is no drug for LC or treatment protocol. Right now, we must be treated on a by-symptom basis.
- Refer us to specialists. I was referred to a cardiologist, neurologist, and brain neurologist.

This is a sh*tshow, and the CDC’s latest advice on isolation only reinforces the public’s misunderstanding of COVID/LC as no big deal. Probably just anxious people who feel tired, won’t happen to big strong me. This is dangerous misinformation. As most of us here know, one Covid infection can rob you of your entire ability to live your life.

What happens a few years from now, after multiple infections? I recently read each covid infection, no matter how “mild”, with or without long covid, lessens a person’s IQ by an average of 6 points. That’s a lot. Now multiply that by the number of repeat infections. We are going to be in the midst of a mass cognitive disabling event very soon.

That’s just the brain. Now, apply that cumulative damage math to other organs affected by long covid. To the latent viruses that Covid infections reawaken. Some of those viruses cause terrible diseases, and yes, even cancer.

It’s time to take Covid and Long Covid seriously. Especially if you’re young. I’m 54 and grateful I had five decades of life without this hellscape.

I saw a rheumatologist when I was at my sickest. While I went over my carefully curated list of symptoms, which I won’t go over here, but they included a rash from waist to scalp that made me miserable and severe arthritis. This guy listened patiently, looked at me with great pity and offered me a prescription for Diclofenac and Prozac. Offered a referral to a psychiatrist and then dismissed me. I mentioned LC and he said it couldn’t be that or I’d be getting better. Obviously, this guy felt I was a hysterical woman overplaying my symptoms because I was just anxious. I wanted to murder him. He wouldn’t even try.

It takes so much time to find the right doctors who are willing to dig in and take you seriously.

AMEN- My Doctor doesn't believe me....My heart felt like it was racing anytime I tried to do the smallest thing which then made it hard to breathe...then a panic attack set in - He literally asked me why I was depressed and what was going on at home to make me depressed.... OMGosh!

I am lucky enough to have avoided the brain fog issue; arguably, my limitations in other areas have given me more bandwidth to be creative. Having said that, without this constant low-grade worry of "what if theyre missing something" and "when will this clear up" does take a fair bit of daily energy. I had health anxiety before this whole thing began... this has not been a fun time.

Between the medical community being woefully unprepared to deal with a realm health emergency and cross-aisle politicians whose best interests are served by ignoring the issue in an election year (we "beat" COVID after all,) I do not see much hope for treatments. A fair number of LC sufferers are functional, if miserable, so why fix what isn't broken enough to matter>

I -believe- my body is slowly winning its fight. I have no permanent nerve damage that they can tell, my symptoms are lessening and fading, and (as strange as it sounds) my anxiety is coming back; it disappeared during the worst of this because, I suspect, my body just didn't have the energy to be anxious. Whether I fight it off or not, though, someone (perhaps us) needs to hold the medical community responsible. They've overcharged and underdelivered for long enough.

Ah, the joy of specialists. My one rheumo visit was terrible too. I came in, guy had clearly not reviewed my notes. Said "why are you here," proceeded to belittle me for seeking rheumo advice for what he believed were nerve issues. Charged me for a repeat STI lab (thanks, sir) and never bothered to follow up.