Why have I heard so many stories of doctors not wanting to diagnose something as Lyme disease?
It took a physician's assistant, who happened to see me one day when both of my doctors were on their third extended vacation of the quarter, to hear my plight, take my suggestion of gout seriously, and do the leg work, also revealing to me that "full test panels" don't include uric acid by default and that my doctors had been lying to me about their thoroughness.
The assistant was also massively more knowledgeable about the disease, its history, the history of treatment, etc., and disease in general, than either of the two doctors running the clinic. Really opened my eyes.
Our bodies are such strange mechanisms.
Ha. Do you still have symptoms? If not, yea just a bad initial diagnosis. If you do still have symptoms sometimes though, it should be noted that gout is hard to test for when you're actively experiencing aggravated symptoms, as the uric acid crystals are lodged into your tissue and not freely available in the blood stream / urine. This exacerbated everything quite a lot, as when I was much younger I definitely got uric acid tests done when my symptoms were at their worst.
> The global gout prevalent cases in individuals aged 15–39 years was 5.21 million in 2019, with the annual incidence substantially increasing from 38.71 to 45.94 per 100 000 population during 1990–2019
So while marginal, it is either getting more prevalent for younger men over the last 30 years, or we are getting better at catching it.
What's interesting is all of the older men I've met with gout describe moderately uncomfortable pains, I was surprised to learn that my case is exceptionally intense, debilitating enough to be a physical handicap at times (along with sciatica, fused discs, flat feet, some other little things and possible fibromyalgia) which has plagued my life since I was in my teens.
It's been a horrendous disease that has greatly impacted my ability to be as active as I'd like, and sometimes during a flare-up it's extremely difficult just to walk to my bathroom. Flare ups sometimes happen constantly and sometimes I get a month or two of reduced symptoms.
Another thing is that I don't eat meat, and I rarely drink, which are the two biggest aggravators of symptoms. When the doc told me I needed to cut those things out I laughed, and they said they were very surprised that my symptoms were so bad given that I already avoid the most offensive foods.
I'm also currently trying to pin down another autoimmune disease. From what I know, I don't speak to him, but my father has been in and out of the hospital his whole life and it took decades to pin it down as lupus. I am wondering if he lacked the butterfly rash because I don't have one, but otherwise have basically every symptom of lupus, but it also could be fibromyalgia or even MS. Combined with the gout though, I feel 40 years older than I am, almost every little tissue and bone and muscle hurts from head to toe (literally toe, gout keeps one of my toes at a constant level of pain).
Add to that:
- They have a lot of patients and not enough sleep.
- They need to pay back a huge student loan.
- They hold terrible responsibilities and risk being sued.
- They don't have much time for themselves, let alone update their knowledge.
- Most patients are overreacting idiots, so it's a winning strategy to ignore what they tell you most of the time.
- They are not trained nor selected for empathy or open-mindedness.
Basically, you have to double-check everything they do, and endure their cynical rebuttal when you make suggestions, ask questions or try things they didn't request.
I had to face many such errors myself, two almost lethal.
When you can, shop for one that is both good and is open to discussion. But even then, there is a limit. At some point, your doctor WILL fail you, so you have to take responsibility, usually when you're weak and at a low point in your life.
And if you are wrong, people will tell you you should have listened to your doctor, but if the doctor is wrong, well, shit happens.
One of my practitioners is a friend of 15 years, I literally lived with him, he is considered top in his specialty. I'm surrounded by people working at the hospital.
He saved my life once.
Even that is not enough. I still have to double check stuff every time.
This is an industry that places people’s lives as vastly less important than minor scheduling issues as someone working 12+ hours is seen as perfectly normal.
Says the programmer who is giving an opinion on a field that is not his...
He was reportedly at a cocktail party one evening when a messenger burst in and informed the esteemed doctor that one of his patients appeared to be dying from a heart attack.
"My good man," he replied, "that can't possibly be true. When I treat a patient for liver disease he dies of liver disease."
The two times I've been hospitalized in my adult life, I've been incredibly thankful for my parents stepping in to act as my patient advocates, including pushing back on doctors when necessary. (The first hospitalization was guilliane-barre and the other a rare hemotological condition, so i wasn't in a great place in either scenario to advocate for myself).
A pediatrician in my family has said that patients get significantly better outcomes when they have a patient advocate, because even if they are directly related to you (i.e. parents or sibling), they are going to be far better at being objective on the situation than you, the person being affected by it, is
Add on top vague symptoms that can’t actually be measured and are subjective and you end up with challenging diagnoses.
I do agree that patients should educate themselves and advocate for themselves. Doctors aren’t perfect and they don’t know everything.
But it helps to have some perspective of what doctors deal with on a day to day basis.
I had frequent headaches and the student health service referred me to a well-known and very respected hospital for tests as an outpatient. The doctor to whom I was referred was a well-known neurologist with papers to his name—probably the most eminent neurologist in the country at the time (even now, some decades after his death, his name appears on Wiki as someone of eminence).
He then sent me for a series of tests at the hospital and they extended over a number of days although not consecutive (which was inconvenient). Those tests were rather exhaustive and included amongst others neurological tests, brain x-rays, electroencephalographs and testing my eyes including injecting fluorescein into my veins to improve the contrast of the photos they took of my eyes/retina—afterwards I was pissing out that brilliant florescent yellow dye for the better part of a day.
Keep in mind that those tests involved other doctors and clinicians who would have examined the neurologists report, so decisions weren't taken in isolation.
After all that and multiple visits to the hospital he said that they could find nothing wrong with me and suggested that I be admitted for at least three days for further tests! I declined as I was about to have uni exams and never did return to be admitted.
Several months later I visited a local GP practitioner because I'd had a bad dose of the flu and after he'd dealt with that I mentioned my ordeal at the hospital.
He was palpably furious and mumbled quietly under his breath which was just audible enough for me to hear "fucking idiots". Within a split second he went on to say "presumably during all this testing no one actually suggested that you might have migraine?" to which I replied "no". That made him even more annoyed.
He then prescribed a common Parke Davis formulation called Ergodryl, which, back then, was a common go-to drug for migraine, it's a formulation of egotamine tartrate, caffeine and diphenhydramine (a well-known antihistamine).
Problem solved, that drug completely killed my headaches. I've never forgotten that incident and although I've experienced similar inept performances I've never experienced one on that scale again. Ever since I've never fully trusted a medical diagnosis unless confirmed by second options and backed up with tests. It pays to be not only cautions but also to do one's own independent investigations.
From my experience, not all doctors are mediocre to the extent that I'd wished I'd seen another, some I've visited are quite exceptional and have an innate ability to cut to the core of a problem immediately, or at least start investigations on the right footing. Unfortunately, from my experience, they seem few and far between in numbers.
I was once introduced to a state director of health (the State's top medical officer) through a common interest outside of medicine and I got to know him relatively well. Some time later I mentioned that incident and he said to me without hesitation that he would not trust 90% of his profession to make a competent diagnosis, and he went on to say that if I were ever to be stricken by some dangerous life-threatening disease that I was to give him a call and he'd provide me with a short list of the competent ones who he'd trust—one's that he would go to if he became sick. Fortunately, to date I've never had need to take up his offer.
Frankly, for the lay person this has to be a significant worry. How on earth does one know who is competent and who is not, especially if it's at short notice?
Those of us outside the US understand the US health care system is more profit orientated than many other countries but we cannot understand the huge price differentials, they're often huge in comparison with many others. Surely figures that high are nothing other than price-gouging. (Even if demand is low and the stuff has to be imported the additional costs can't be that costly. Surely not?)
So why doesn't consumer and or monopoly law kick in to stop it (as it does in many other places)?
Health-care industry lobbyists spend huge sums to convince lawmakers that they're not price-gouging and _any_ kind of price control is somehow illegal and/or will destroy the economy. This allows them to keep prices high, colluding with health insurances to make deals that incentivize buy insurance (direct-to-patient prices for many medical things are much higher than the prices that the insurance companies pay). Prices high enoguh to make it worth spending so much on lobbying.
It's completely backwards and very anti-consumer/anti-patient, but money has such an outsized influence on our politics, it's ridiculously difficult to get changes made that actually benefit the average citizen.
FYI, I'm in Australia where we have Medicare which is a universal health care scheme† supported by government taxes. It's not perfect and could always do with more money but people here love it. Tampering with it in a negative way would be electoral suicide for a government at election time.
That said, a visit to a GP is only partly paid for by the scheme (about 2/3)—that is unless the Dr 'bulk-bills' all accounts to the scheme and many don't. Bulk-billing allows a patient to walk out of a surgery without paying anything.
That long preamble lets me lead on to something you may not be aware of although many of your countrymen would be. Some years ago the government made changes to the Pharmaceutical Benefits Scheme—which is the drug store equivalent of Medicare where drugs are heavily subsidized—because many Americans who were visiting here used to stock up on prescription medicines and take them home because the price differential between here and the US is so great. Incidentally, COVID vaccinations are also free as they're covered by the scheme.
Previously, anyone could take a scrip to any pharmacy and have it filled without ID, now one has to have one's Medicard card with one or have its number on file and the Dr's script has to match that ID.
The pondering issue for us is why doesn't the US population rise up on mass for a better deal?
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† Some years ago I heard an American (I think it was Michael Moore) say that Roosevelt had intended to set up a similar universal health scheme but he died before he could implement it. Is there any truth in that?
A particularly nasty one is endometriosis.