What Happened to Doctors?

@colleenyoung - not all of us have the time or energy to even begin the process of being evaluated by Mayo.

Are there any in the DC area that are evaluating and treating? When I look at reported numbers of suspected LC people - didn't Colorado say there alone 900k? - it is remarkable to me that so few doctors seem interested.

Thanks.

To you and others, @stumpedandgrumped, I'd be happy if anyone in my PCP's practice had even considered LC as an issue even tho' symptoms began after I tested + in 3/2023, had initial symptoms that continued and were exacerbated and their practice has said they've read nothing - not even what I've sent them from university hospitals and others.

I don't remember from your other posts - and I don't know from all that have written: are men experiencing the same lack of interest in LC health issues as women? Are those of us who are older (choose your age - I'm late 70s and still working) dismissed more easily as in "oh this must be because you're getting older and slowing down"?

If I had two Senators and a voting Rep in Congress, I'd contact them to scream. I'd throw myself on the White House fence if it would help tho' that would prob result in an arrest v. medical care! (I'm kidding about the latter - I won't.)

What if all those who must work in any capacity stopped bec it was too hard? I know some have - another article today (3/14/24) in I think the NYTimes detailed a young woman now pretty much in bed and cared for by her mother.

Our cries are just not loud enough and today, a day when I need every bit of concentration for work, is a "Bad LC Day" and I'm doing all the hydrating I can to energize.

@jeindc, here is a related discussion to ask about clinic recommendations:

- Recommendations on specific clinics for long COVID
https://connect.mayoclinic.org/discussion/recommendations-on-specific-clinics-for-long-covid/

My 2 cents worth is that the problem with the medical system is the high level of restrictions imposed both by insurance and by government.

Your doctor's job is 1) to order the correct tests based on the symptoms you report, and 2) to use any abnormal results from those tests to determine the correct standard of care treatment, and 3) to provide you with exactly that treatment, no more, no less. The term for this is "evidence-based medicine" and it is what an insurance company will pay for. Anything else is viewed as basically an experiment, will not be paid for by insurance, and may even push the boundaries of "human subjects research" which is illegal to do without following a bunch of expensive and time-consuming rules (which, sadly, are there for a reason.).

If, as in the case of long COVID, there 1) are no abnormal results and 2) is no standard of care, they are really very limited in what they can do, even if they might want to (which most of them don't since they've been brainwashed to believe that evidence-based medicine is the right thing.)

IMO there needs to be someone out there with some flexibility to do patient by patient experimenting without high levels of regulation. Maybe some institutes of experimental medicine, where any patient going there realizes that they are a guinea pig at some level.

I feel that I need to have the answer or a possible answer before I ask the question. On my face I have a large enough bump to notice on my eyelid and it’s been there for about eight years and my doctor never asked whether I had had it checked Sad to say all my friends saw it. Basal cell carcinoma is the result.

"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."

So true. I've been seen at Mayo's neurology, cardiology and audiology departments for nearly a couple of years now for 'head awareness' and lightheadedness issues stemming from unconfirmed Long COVID. I've had nearly every possible scan and test. All normal. When diagnostic options apparently ran out I was ultimately referred to Mayo's Physical Medicine and Rehabilitation department...a sub-clinic within Mayo's Psychiatry and Psychology department. There I had an extended visit with a psychiatrist who determined that I was mentally well. I was, however, provided a bag full of pamphlets and DVDs dealing with how to cope with my symptoms, relax, decompress...and a recommendation to seriously consider extended Vestibular and Balance Rehabilitation therapy somewhere. Meanwhile I continue to get lightheaded every time I kneel, stoop or bend over...and it's getting worse! Physical movement is causing a physical reaction...but evidently "it's all in my head".

@jvoll

And when you first noticed it, did you ask any doctor to check it?

Have to be the advocate of your own body and then becomes a dual two way street with a doctors.

Unfortunately there is a generation that has been conditioned to think that those in white coats are mind readers and miracle workers. Nope. Just the average human who spent extra time in the books and gets to walk around with people thinking they are god.

Until this mind shift changes, people will just continue to be disappointed with doctors. When in actuality they are providers in a service industry. The same way other service industry workers mess up, so do doctors.

Too much faith put in them.

You are the owner of you and the only one whom had the owners manual to your body so to speak.

There's an interesting article in "Nature," dated 1/12/24, entitled "Google AI has better bedside manner than human doctors and makes better diagnoses." I think the problem so many LC patients have uncovered is that while we (most of us who've been around a bit and in my case have worked in hospitals with doctors, and have seen a few myself) don't expect gods, we do expect respect, empathy and an intelligent quest to diagnose the problem accurately, prescribe the treatment and/or tell us if they don't know how to fix it. Often we don't like the answer "I don't know," and can't help but be frustrated by the current situation ... lots of research, no real clinical applications. I don't think it's us patients who are worshipful, but I do think many doctors suffer from a god complex, probably from years of training by other godlike folks. In my life, I've seen many doctors whom I respect, admire and trust, but they've earned it. Most of those I've seen for LC have not; I believe it's at least in part due to intellectual laziness. You can't teach some doctors anything, because they already know everything; they learned it in medical school, and can be quite dismissive when stumped. Like all humans, there are people who are great at their jobs and then there are the others, but they all graduate from medical school with the same degree. (Old joke: What do you call the person who graduated last in class at medical school? Answer, "Doctor".) I don't agree we need to be our own doctors; like I don't want to do my own auto repairs, but I do think we need to keep our expectations realistic until solutions are found. I believe LC has put a spotlight (or an X-ray) on some systemic problems in the medical profession, much as Covid has done for other societal ills.