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Sorry to hear about the negative experience. When helping a family member through some health problems long ago, I learned that many of the primary care doctors that are easiest to get into are also some of the worst for dealing with complex problems. It makes sense when you think about it - Doctors who provide poor care or who assume the worst from the patients are the least likely to retain patients and therefore the most likely to have openings.

What worked for us was finding a primary care doctor who was recommended by others, even if the wait for a new patient appointment was measured in months or years. From there, the PCP was used as a pivot point to get to specialists who knew what they were doing and as a contact point for basic medication management. Letting PCPs try to manage complex conditions is a mistake, IMO.

I should mention that this failure mode isn't unique to American medicine. The same dynamic plays out in many countries and indeed in many industries beyond medicine. Getting into the experts who know what they're doing is hard because they're in the highest demand. Getting into below-average providers of any profession is always easy because they're not buried under referrals and people knocking on their door.

Chronic illness, and various autoimmune forums on Facebook / Reddit are great resources for learning.

What tests to get. What sort of doctors to see. What works and doesn’t work. Tips dealing with doctors.

They can be good resources, but depending on the condition they can also be a huge source of misinformation. Don’t take any one group too literally because some of them become echo chambers of misinformation and actively hostile to anyone who disagrees.

There are even a few chronic conditions that attract a lot of incorrect self-diagnosed people who insist they have the condition despite every test suggesting they don’t. For example, many people self-diagnose as having various thyroid disorders based on vague symptoms (or WebMD, etc) but won’t let go of the diagnosis when all of their thyroid tests come back perfectly normal. This leads to weird social media bubbles where people insist the tests are wrong and start sourcing their own medications, with predictably bad results.

Low testosterone is the current big trap for men. You can find social media groups that claim that testosterone is basically a cure-all and that the current reference ranges are far too low. Again, they’re usually quite confused when they finally get a testosterone prescription and it doesn’t fix all of their problems like the Facebook groups or TikToks led them to believe.

Be careful out there.

This is my experience. They can be good emotional support resources but often develop an orthodoxy unsupported by science and enforced through shaming/berating (e.g. people with lupus shouldn’t drink orange juice or supplement with vitamin C, and similar nonsense).

My advice is read all you can to thoroughly understand what’s happening to you - The Lupus Book by Dr. Wallace, The Lupus Encyclopedia by Dr. Thomas are two great compendiums and candidates for Kindle. Then find support resources that look at the condition as something that can be and should be managed, eschewing the mesmerizing appeal of self-pity and one-upsmanship with symptoms.

The fact is that managing lupus puts a higher priority than normies have on diet, fitness, sleep, mental and physical stress management, and UV exposure. Ordering your own blood work - understanding the tests that are valuable and how to diagnose results is also a good practice for taking charge of your condition - i.e. what are the early warning signs that my kidneys may be “silently” failing; what are my baseline CBC numbers, specifically white blood cells, and can I provide those to a GP/PCP on the fly; etc.

Social media, I found, doesn’t really advance what is mostly a solo journey to preserve function through daily mental and physical discipline. However, another thing I’ve come to appreciate is that most (healthy) people don’t enjoy listening to stories about medical problems, and if you just need to tell your story and get some brief positivity and empathy, online groups can fill that need.

Keep in mind that the alternative is for doctors to routinely dismiss problems as anxiety.

Many conditions can take dozens of doctor visits and years to get a correct diagnosis. Many doctors are not up to date or even aware of common conditions.

People that have a chronic condition are continuously called hypochondriacs. There are a lot of people that basically tell them to shut up and just pretend everything is okay

I am hoping to actually produce software that helps patients navigate autoimmune issues and neuropathies. I had a reaction to a drug that mimicked many diseases and had to go down the rabbit hole myself and find reliable sources of information for many things.

I also found that doctors are just awful, they don't have enough time to hear about 10+ symptoms that may be common with complex autoimmune or neurological issues. I never received proper referral. I have been to Mayo clinic, which was close to proper diagnosis but decided against blaming the drug.

As far as reddit and facebook being a huge source of misinformation, I have to disagree. Some groups are awful. However, the SFN subreddit has great document written by a frustrated physician. Many autoimmune groups link to research papers and non-profit organizations which provide databases of doctors interested in treating particular issues.

One just needs to understand that some commenters are just average people who may or may not be well informed on the subject. However, the wikis and documents on those support groups are generally fantastic.

Sounds like a great place for hypochondriacs to hang out.

This is a very hateful stance.

Being critical is not being hateful. The fact is that a lot of online support groups get a weird mix of people - people who actually have the clinical diagnosis, people who feel they may be on the road to a diagnosis, people that want to imagine they would get the diagnosis, people who can't get the diagnosis but figure the system is aligned against them for whatever reason, friends/relatives of people with the diagnosis, etc. I always find it weird that some people "want" to have a chronic medical condition or be perceived as one who does - and I've met them. Hypochondriacs show up, that's a fact, Jack.

You're not wrong, but why are they exhibiting hypochondria? These sorts of disorders are complex and multifaceted.

Yes, many people on these subreddits are hypochondriacs, by definition, but you can find them coalescing there, buying placebos, going to chiropractors, functional medicine doctors, naturopaths and reading sketchy journals because they've been told they're fine by doctors. However, it's blatantly obvious they are not fine, because if they were fine, they wouldn't be experiencing those symptoms. They may not be ill in the way they think they are, but they are not well.

Doctors are too ready to write off patients as worried well, but sometimes it turns out those symptoms are due to a real physical issue, and it can take years of fighting the system to find a solution. We're increasingly seeing that autoimmune, neurological, gastrointestinal, hormonal and other types of issues can cause issues across the whole body as well as directly triggering psychological disorders. Often these disorders are not even known to GPs who haven't kept up to date since leaving medical school. A patient with no history of mental health issues presents with sudden health anxiety and panic disorder out of nowhere, is it a primary mental health disorder or is there another underlying issue (psychological or physical) that's brought it on? You can't know unless you take their complaint seriously and properly investigate, but doctors are under time pressure and keen to just write it off as anxiety disorder and stick the patient on the antidepressant treadmill.

Other times, it is purely psychological or somatic, but so what? Mind and body health are intimately tied together. When one starts to deteriorate, the other often follows. Take some Zoloft and go for a walk may be a quick and convenient answer, it may even work a lot of the time, but evidently there are many, many people who find it unhelpful. Rather than looking at alternatives, some doctors will just try and say the same things over and over until the patient gives up.

Then we wonder why people give up on modern, science-based healthcare and get roped into less scientific disciplines. Modern medicine is one of the greatest achievements of human civilization, but many doctors seem to have forgotten that you're treating the patient, not the disease.

I have to say that this is exactly why I like having Kaiser as my health insurance. Because Kaiser is also my healthcare provider, if I need to see a specialist, all it takes is a referral from my PCP or any specialist I'm currently seeing, and it's done. And, they practice evidence-based medicine to the extent that's possible, which means that treatment decisions tend to be pretty reasonable. My PCP refers out whenever there's anything outside her expertise.

I know it sounds like a massive conflict of interest to have one's physician working for one's insurance company, but, somehow, it really seems to work and work well, bypassing those failure modes you mentioned entirely. I've gotten in to see specialists within a matter of a couple of weeks whenever I've needed it.

I wish I had your experience with Kaiser. I've hit that conflict of interest multiple times. Most recently, after going through triage and waiting six weeks for an appointment, and after half way through it with [specialist], I learn that they're actually not the specialist I thought I was getting and just performing triage. This person lacked even basic knowledge on the topic, and none of the classes or groups she can find actually address the issue in question. When our time is almost up she finally decides to lookup a specialist. There's only one available with only one date available in another couple months. But she's only looking in one geographical region because she doesn't have access to data for the other region that can also serve us. If I book this appointment, she informs me I won't be able to find another specialist in the other region because a patient can be assigned to only one specialist. So it seems data actually is integrated across Kaiser's "regions", but only so far as to support their bottom line.

Kaiser doesn't have a "bottom line" to support. North and South Kaiser are two completely different orgs, but they both use the same EHR technology and can move records between them with no real friction.

They may not have a bottom line, but they certainly put up barriers to accessing specialty care that I never experienced when using the Sutter/Blue Shield combo. Also this wasn't a North Kaiser vs South Kaiser thing. More like Solano vs Yolo/Sacramento counties.

Kaiser doesn't excel at specialty care, I will agree with that. There's more friction (and inter-regionally, which is not something I've had to deal with since I'm in the bay area which is the kaiser mothership).

Kaiser exists to maximize healthcare for reasonable costs across a wide range of people, and they do so by keeping general health high, but at the expense of specialty. In a city like SF, that means Kaiser will send you to UCSF for a transplant and pay a significant fraction. In Solano and Yolo/Sacramento there are far fewer specialists and even then I'd expect you to be referred to UCSF (when I worked there, there were constantly people visiting from all over the state for transplants).

Having experienced access to care inside the Kaiser system and outside the Kaiser system I have to say that with the integrated approach that Kaiser has accessing care is easier, getting Kaiser to cover care is easier. Outside of their HMO, with standard PPO care it's a veritable morass of insurance portals, individual doctor portals, no shared medical files so you end up having to request medical records, and send them to each provider individually and for prescriptions... With Kaiser if you need it, you go to the pharmacy at the facility where your doctor is and odds are they'll have it for you. There's no need to "shop around" or wait for a prescription to be transmitted to CVS, Wal-Mart, your local grocery store, etc. It's just there. You have full access to your complete medical record and test results online at any time. My family always received top-notch care and from what I've seen now that I'm on the outside (F's for Cigna), it's just a better way to do medicine.

That said, my experience and my family's is from Kaiser Permanente Southern California (San Diego).

How do you get doctor recommendations? How do you know that the recommender was able to properly evaluate the care they received (especially in the presence of not yet solved issues like back pain, and non-issues like "sometimes my nose gets stuffed up" which goes away regardless of what the doctor does)?

Heuristics That Almost Always Work

(...)

The Doctor

She is a primary care doctor. Every day, patients come to her and says “My back hurts” or “My stomach feels weird”. She inspects, palpates, percusses and auscultates various body parts, does some tests, and says “It’s nothing, take two aspirin and call me in a week if it doesn’t improve”. It always improves; no one ever calls her.

Eventually, she gets sloppy. She inspects but does not palpate. She does not do the tests. She just says “It’s nothing, it’ll get better on its own”. And she is always right.

She will do this for her entire career. If she is very lucky, nothing bad will happen. More likely, two or three of her patients will have cancer or something else terrible, and she will miss it. But those people will die, and everyone else will remember that she was such a nice doctor, such a caring doctor. Always so reassuring, never poked and prodded them with needles like everyone else.

Her heuristic is right 99.9% of the time, but she provides literally no value. There is no point to her existence. She could be profitably replaced with a rock saying “IT’S NOTHING, TAKE TWO ASPIRIN AND WAIT FOR IT TO GO AWAY”.

(...)

https://astralcodexten.substack.com/p/heuristics-that-almost...

Such a sad story. With women the experience is typically worse on average when they talk to doctors as the doctors even female one trust them less than male patients. Even feminists advise to go to a doctor with a husband or male relative or friend and let them do the talking.

I'd never heard that, but it sounds to me like the other side of the same coin regarding what's commonly said of men: that they delay going to the doctor for too long as symptoms progress, or even don't go at all unless insisted upon.

It could be that, on average, doctors become accustomed to the idea that when a man visits them it must be very serious, and therefore when they are visited by women they generally display milder or less obvious signs and symptoms by comparison (again, on average). Hence, doctors may get the impression that women are more hypochondriac than men when the fact of the matter is actually the inverse.

Men get routinely ignored, disrespected and misdiagnosed as well. The doctor-patient relationship is adversarial (when facing someone you don't already know), what matters is not what they choose to give you, it's what you can take from them. This is why people who are more assertive and confident will generally do better, as well as people who come in groups.

Yes, I am a man with Lupus, they ignored my lab test results for 35 years before I forced them to give me a Lupus panel to get me to a rheumy.

It's kind of rude to write that when men proportionally due way younger than women, the outcomes are systemically sexist.

Damn that is a lot, I'm sorry. I can imagine it's hard to find peace with those circumstances.

My sister is experiencing these symptoms too and puts it on MS, but doctor can't confirm and in the meantime basically medical system is zero help. Canada is a bad place to be debilitatingly ill but not visibly bleeding out.

What is in a Lupus patient's chart that causes doctors to think they are drug seeking?

Pain, most likely

The sibling comment is correct. Lupus gets you access to all kinds of schedule 2 drugs that some people really get a kick out of. Not to mention, there's often no outside "proof" that someone's immune system is attacking them. A normal looking person walks in and says "hey I have Lupus" and the docs can't really do anything but give them pain pills.

The inflammation associated with Lupus should show up in blood tests (CRP and ESR) while it's flaring, as it does in other autoimmuine diseases. (Those markers are super non-specific and all sorts of things can raise them, but it is a measurable data point).

You can get also get an ANA test for lupus.

An ANA can be negative even if you have Lupus. It is rare, but his is one the the problems? Is it rare because it is rare or because they are not testing for it?

https://www.hopkinslupus.org/lupus-tests/lupus-blood-tests/

"In fact, only 2% of people with lupus will have a negative ANA. People with lupus who have a negative ANA test may have anti-Ro/SSA or antiphospholipid antibodies."

The current protocol is that if your ANA is negative they will not look any further. See figure 2: https://ard.bmj.com/content/78/9/1151

Whaaat? Not sure what doctors you see but SLE does have a test battery that includes blood work and the presence of other shitty but objectively possessed symptoms like pleurisy. Many people with diagnosed lupus will tell you of the hard and stressful journey they went through to eventually get the diagnosis (because it’s rigorous and rather specific). The drugs that lupus patients get access to aren’t the kind you “get a kick out of” - meloxicam, hydroxychloroquine, prednisone, and it gets worse from there, e.g. methotrexate and other immunosuppressives. Lupus sucks balls, and the meds are almost as bad other than the fact that they keep you from dying early. I’ve never heard of a doctor that would take a self diagnosis of lupus seriously, much less do that and hand out prescription pain killers (assuming that’s what you’re alluding to). It would be like walking in and telling a doctor you had cancer and needed oxycodone to treat it: doc’s gonna have some questions and want to see some data first (hopefully).

You Mom's story is so sad and it is why I do not go to doctors anymore. My mother probably had lupus as well that went undiagnosed her hole life. We have all the same symptoms but she died before I was diagnosed.

I have lupus. I am on disability for it mostly because of the neuropsychiatric issues. It took 35 years for them to diagnose me and it was the doctors who figured it out, it was because of my own investigations. When I look at these drugs I asked them "can I do the same with diet and environmental changes", they said no. I proved them wrong. I still have flare ups and they are sometimes unpredictable. Just three days ago I had a psychotic episode from COVID, and stress can set me off as well, but the constant pain is not there and my WBC is up and my panels are usually negative.

The biggest problem my mother and I had was that we had neuropsychiatric lupus which meant they they only saw the mental illness and refused to look at other issues. I had constant low WBC, hyperkalemia, leukopenia, discoid lupus, and arthritis but all they ever saw was the metal illness.

So I mostly proved them wrong. For most people with Lupus, it can be overcome with diet and environmental changes.

So, back to the article. I hate articles like this. Lupus is a highly polygenic disease. I have my genetics, I have some SNPs in TLR7 gene at ~10% for europeans. But I feel my Lupus is mostly caused by several purine nucleoside phosphorylase (PNP) SNPs.

https://pubmed.ncbi.nlm.nih.gov/28859258/

But it does not end there, I see STAT4, IL10RB, TNFAIP3 and mutations that probably play a role.

But how is it my diet can negate all these SNPs? Why do some people with these SNPs not get Lupus.

For me, this is where diet and my FADS1 and FAD2 genes play a role. Ever since I started eating only fish and shellfish, and zero plant oils but for some olive oil I have been way more stable than any drug they gave me.

https://www.lupus.org/news/study-shows-omega3-fatty-acid-sup...

I thought being vegan would help when I was younger but it made me worse.

So while that kid is interesting it makes it seem like there is nothing the rest of us can do who do not have these rare point mutations. TLR7 mutations do not cause every case of Lupus.

I am sorry for your loss you and your mother had to go through. I don't think I have ever experienced frustration at the level that you have working with the medical system in US.

Western health care philosophy is just so terrible for these classes of diseases that are just not well understood.

The immune system is not understood well at all, but western medicine does have quantifiable success in treatment of lupus. In the 40’s or 50’s, scientists/clinicians tracked a cohort of representative lupus patients and within two years of diag most were dead. Today lifespan has been greatly extended, protecting the organs being a big advance. IF you have lupus, and IF you get diagnosed, and IF you can afford proper prophylactic drugs and IF you manage your diet, exercise, sleep, stress better that you ever used to, you can usually manage it and hit old age. The western lifestyle is a bigger impediment to health than western medicine.