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A Spanish teen’s genome may hold the secret to lupus

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Re: A Spanish teen’s genome may hold the secret to lupus

#61

Earlier quoted context omitted.

I've been struggling with the same sort of thing for 8 years now. I've been to dozens of doctors in several different countries but never got a proper diagnosis. From my own research and observations I'm quite confident it is, as you elude to, an auto-immune related disease. The two major triggers for me are exercise; particularly anaerobic e.g weightlifting, and alcohol. Alcohol actually alleviates the symptoms for…

I've been dealing with autoimmune issues for years as well. I have yet to find a doctor that is willing to help me get to the bottom of it. I too have seen doctors in multiple countries. For me, the trigger is carbohydrates. Doesn't make having a good social life easy. I'm on a forced ketogenic diet because of it.

Yes, for me as well. I would say, if you are doing Keto, watch your Omega 3/6 balance. My brother did it for a year and focused on mainly red meats. He lost a bunch of weight but the inflammation from the Omega 6 is what probably caused his ankylosing spondylitis and triple bypass.

I quickly became manic when I only eat red meat.

Re: A Spanish teen’s genome may hold the secret to lupus

#62
post #18

I've been quite interested in auto-immune diseases lately. I have a friend with fibromyalgia which latest tests[1] have shown to potentially be an auto-immune disease. The symptoms are similar to lupus, and also similar to what I hear people report as long covid. I don't have a background in medicine, but these all seem related and are all poorly-understood and treated. It is frustrating to watch as those affected ha…

My personal theory is that many long covid cases are people who developed autoimmune diseases either from covid or around the time they got covid.

That's half of the cases on House, M.D.

It's not one super rare disease, but a combination of lupus + something else

Re: A Spanish teen’s genome may hold the secret to lupus

#63
As my late wife discovered a food sensitivity to Nightshade plants, that are common in our diets, can mimic the symptoms of both Lupus and Rheumatoid Arthritis.

When we cleaned up our diets and got chemical based products out of our house, we switched to Hemp based cleaning and body products, her Lupus and RA symptoms went away and never returned.

Common Nightshades are:

Potatoes Tomatoes Eggplant Peppers (including bell, cayenne pepper, and paprika). Gojo berries are also Nightshades, they are not a 'superfood'.

The list is far longer than just those common ones.

We are what we absorb from all sources.

Re: A Spanish teen’s genome may hold the secret to lupus

#64

Earlier quoted context omitted.

I've been dealing with autoimmune issues for years as well. I have yet to find a doctor that is willing to help me get to the bottom of it. I too have seen doctors in multiple countries. For me, the trigger is carbohydrates. Doesn't make having a good social life easy. I'm on a forced ketogenic diet because of it.

Yes, for me as well. I would say, if you are doing Keto, watch your Omega 3/6 balance. My brother did it for a year and focused on mainly red meats. He lost a bunch of weight but the inflammation from the Omega 6 is what probably caused his ankylosing spondylitis and triple bypass. I quickly became manic when I only eat red meat.

You know that's actually really good advice. That is something I should be more mindful of. Thank you

Re: A Spanish teen’s genome may hold the secret to lupus

#65

Earlier quoted context omitted.

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 whene…

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 c…

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.

Re: A Spanish teen’s genome may hold the secret to lupus

#66
post #54

Earlier quoted context omitted.

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.

Sounds like a great place for hypochondriacs to hang out.

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.

Re: A Spanish teen’s genome may hold the secret to lupus

#67

Earlier quoted context omitted.

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 do…

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.

Re: A Spanish teen’s genome may hold the secret to lupus

#68

Earlier quoted context omitted.

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 do…

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

[deleted]

Re: A Spanish teen’s genome may hold the secret to lupus

#69

Earlier quoted context omitted.

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 t…

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 whene…

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).

Re: A Spanish teen’s genome may hold the secret to lupus

#70
post #22

My mother had Lupus. It's kind of another "American medicine failure" story. She'd go to the doctor's office and get berated for being a painkiller junkie even though she never once asked for painkillers. Doctors would just look at her record and assume. When she finally did get a doctor that tried to help, she got put on this weird steroid that made her body a little stronger but at the cost of some brain fog. She w…

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.

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