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.

I agree there are problems. I have a long time primary in a medical group setting. Recently was having serious abdominal pain but not enough to go to the ER. My doctor was not in so I saw a PA who works with him She examined me with my clothes on including taking BP over my sweater. I asked what the reading was, she replied “ok”. My chart says I take meds for high BP. Then she examined my abdomen ( I was fully clothed). She said probably a strained muscle or possible hernia. Sent me for ct. Results showed no strained muscle or hernia, a bit of fatty liver ( which I knew about), all other organs fine. BUT possible tics in the sigmoid and a questionable focal mass in that area. I had a normal colonoscopy 6 months ago. Now I have to see the gastroenterologist for follow up. I feel the PA should have thought my pain might have been gastroenteritis at my exam. So now on pins & needles until I see the GI doc. He’s good but on vacation. I’d like to go on a vacation too!

@stumpedandgrumped-

Nothing has really “happened” to doctors. Society is just finally coming around to change their perspective of what it should have been all along.

Doctors are facilitators of prescriptions. Nothing more. It has never been the doctor that has made you feel better, it has been their educated guess on which drug could possibly control/alleviate symptoms. As patient's, given the way historically the picture has been painted of a doctor, it is about time that we have a cultural shift of how we see them.

They are in a service industry. NO different than any other service industry where YOU are the paying customer. Have you ever noticed when a doctor comes into the room? Some doctors greet with “what brings you in today?” Some greet with “how can I help you today?”. Somewhere down the line patients have forgotten that they are paying for a service. That service is just so that doctor will listen/look and provide a prescription.

It is time that a new young generation be taught at a very young age in schools and in the home how to properly take care of themselves for a fit and healthy life to stay out of a doctors office as they aren’t their to fix life long bad lifestyle choices. In a society that promotes pills for everything, there is a false perception that you can eat junk all your life, but don’t worry a pill will help you when you have diabetes. It is not the doctor helping you, it is a pill. Now if you had learned at a really early age the truth about medicine and that you are in the drivers seat of your own health your entire life, things are different.

When things occur like Covid, something new, it shines a light on the fact that doctors are humans just like everyone else. Some doctors even only continued onto med school because after undergrad they didn’t know how to exist in society without being in a school type structure. So they continued on in med shook as a shield of another 8 years to be buried in books rather than a shift into adult society. Sad but true. Many doctors have imposter syndrome and fake their way through every patient appointment knowing they are a fake and how they ended up an MD has nothing to do with wanting to care for other people and everything to do from staying out of a transition from not knowing how to survive without a school front.

As a society shift starts changing in being the owner of one health and being proactive versus reactive, you will soon see a change.

*disclaimer. I am not speaking about anyone born with a genetic health issue or emergency event.

Me, I’m looking hopeful for the patient revolution 🙃
https://www.patientrevolution.org/

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.

@sushicat, there is the possibility of covid lowering IQ, not that it does, or for every person that gets covid. Research papers on the topic (I'm a research scientist) use words such as "indicates may" and "suggests" that are not conclusions. The .com and "health" sites morph those maybes into conclusions that covid lowers IQs. For me, covid just resulted in PEM (mostly gone after a year). I'm 69 and no matter what a person's age it is important to exercise the brain. Our neurons rewire through life. Doctors used to believe that our brains do not heal readily due to absence of stem cells, Even with injury and disease there is neuroplasticity.

Thank you for that important clarification. My single covid infection at 52 attacked my brain. It was like I had instant dementia. I got lost in my own neighborhood where I’ve lived since 1996. I couldn’t remember what floor I lived on for nearly a year. I have pre-covid memories that seem to be forever erased. I could not tell my left side from my right. I couldn’t tell time. I could not read at all - not even a Tweet. My first instinct was to hide it all, like a dementia patient. This lasted about 16 months. I’m very lucky that I recovered my everyday brain function, although I am told I am not at the level I was before Covid. The brain is fascinating. I love Oliver Sacks’ writings. And the book The Brain That Changes Itself, which I bet you’ve read. I hope I never have to go through those 16 months of instant dementia again. I still get flareups/relapses, but nothing like it was before. And of course, I still have other long Covid symptoms, but they are also slowly improving. Anyhow, thanks again for your clarification. I’ll be more careful choosing my words in the future.

I had a moderate traumatic brain injury 30 years ago, a not-fun learning experience on the brain and rewiring. It is easy to lose onself with a brain injury, and the path back is hard work and time. I'm glad that you covid-associated brain injury is improving. My head injury took about 2 years to get to ~80% and some years after that to approach 100% (still a few loose marbles). The brain is like a muscle in that if you don't use it, you lose ...parts. My rewiring was helped by concurrently writing my PhD dissertation, neither of which helped my social skills.

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.

I’m sorry you had a brain injury, my LC doctor has likened Covid brain damage to traumatic brain injury.

It took hard work to relearn very basic skills (left shoe versus right, why the light switch doesn’t turn on the faucet, etc.) One perk: any movie or tv show I watched during those 16 months was not recorded as memory into my brain. So rewatching feels like the very first time!

However, I did lose precious memories, and I lost time, which was creepy. Hours of my life were unaccounted for, they were never recorded by my brain as lived experiences. It makes me sad that I cannot share some memories with my husband.

I'm beyond impressed that you completed your PhD dissertation during your brain injury recovery! I invented some games that helped me, plus mnemonics and crossword puzzles. And I’ll never forget the first book I was able to read - 18 months after my acute infection.

Take care.