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Comment by wincy | Hacker News Reader

When our daughter was born with a rare life threatening condition my wife used SciHub to read articles about her condition. While the doctors had merely skimmed the pages, my wife pored over them and found a suggestion of using a particular drug. After asking five different doctors about it, one finally agreed to prescribe it. It was strange how reticent doctors were to prescribe something and instead just told us she was going to die. If she’s believed to be terminal anyway, why not prescribe a relatively well known drug and see if it helps?

I’m happy to say our daughters prognosis has improved greatly since she started this treatment. Without SciHub she might not still be with us.

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Thank you for sharing an inspiring story.

When my mom was diagnosed with breast cancer my dad poured over literally hundreds of medical papers to determine the best course of action. I believe he saved her life. Scihub was instrumental in that. I helped a little in checking and challenging his conclusions. I think it's unlikely she would have had as good an outcome if we'd just listened to the doctors.

My conclusion is if you want the best medical care be sure to do your own research and talk to many doctors about your findings and treatment options. Do not blindly trust the medical community. They are years behind the current state of knowledge in their field and just do not have the time and energy to spend per patient to get the best outcome.

My wife has the sharp mind of an engineer, but she was humble about reading the literature slowly and deliberately. She knows she’s not a doctor. However she was firm in asking the doctors questions about what she read, getting clarifications and not being satisfied with answers like “this is how it’s done” and would keep asking until things were explained. The doctors thought she was just obstinate against any procedure which was frustrating. She used the doctors as a resource, then made the most informed decision she felt she could. We got second opinions from experts at other children’s hospitals.

I feel sort of sick remembering one meeting where they told us our daughter would get 24 hour nursing care covered by insurance if we got her a tracheotomy, what a weird carrot to dangle in front of a parent. I think they thought what they were suggesting was the best medical choice but a baby with a trach needs 24-hour care because it can’t even cry when the tube is in its throat.

I had a doctor mis-diagnose a very serious eye infection that could have led to blindness on one side as... a stye. And recommend I treat it with hot compresses.

Luckily I'm obstinate and finally saw a specialist who correctly identified it and treated it, but it's critically important to be very active in your own medical treatment. Get second (and third, and fourth..) opinions, raise lots of questions, push back (politely) against things that don't seem to make sense.

> My conclusion is if you want the best medical care be sure to do your own research

I would alter this slightly to "have a trusted advocate do research and talk to many doctors". The person with the life threatening diagnosis may not be in the right frame of mind to advocate for the best treatment. Should you ever find yourself in the hospital, having a capable ally alongside you can make a world of difference.

Very wise, and it's important to remember that no matter how 'in the right frame of mind' you are normally, you are basically a different person when coming out from general anesthesia.

Is it possible to find, say, a private doctor that is able to give more personal care than a GP at a typical hospital? Whenever I talk to a doctor about my symptoms it feels like they're just doing triage. I can't really blame them for that, but I would happily pay $$$ for an experienced professional who truly cared about my health. I have no idea if such a thing exists though (outside the sphere of the very wealthy, of course).

I pay $150/mo to be a patient of a local "concierge" doctor in Sacramento. This is a D.O. that previously had a regular insurance-based practice. Appointments are free, usually on time, and can run 20-30 minutes. Labs and prescriptions can still go through my regular health insurance.

Thanks -- this definitely seems like a step up.

That's amazing. Breast cancer is a common killer. Do you plan to write about it? Would love to read about. it.

This is an incredible and inspiring story. Would love to read more.

Could I connect you with some journalists? My contact info is in my profile.

Sure, my wife loves talking about her (it was mostly her, honestly) struggle to get the best care for our daughter, even at a “good” children’s hospital, I’ll send you an email.

Wish it's possible to publish user 'eloff' 's story above too if he/she has no problem with it.

make sure to post the article here when you finish writing it or a video.

I myself have used SciHub this very week to understand a medical condition that is taking over my life, before seeing a very expensive private specialist soon.

SciHub gave me access to valuable information that helped me understand my condition and the right questions to ask my doctor next week.

SciHub got me out of a bad procedure (serious enough that I'd be put fully under), or rather a series of bad procedures. Reading all of the papers on my condition gave me another effective option that not only 1) avoided the procedure, but also 2) if I had gotten the procedure, it's the kind of procedure that would have to be repeated every few years when the symptoms reoccurred. Turned out that a far cheaper, less arduous treatment could hold off symptoms indefinitely. I'm grateful to Elbakyan every day, and am also long past when I would have probably had a second or third occurance.

There was a talk about medikanren which can make deductive connections from a database of facts extracted from medical research. The speaker used it to find a treatment for his son's rare genetic disorder.

https://www.youtube.com/watch?v=Yval98eOyZc

http://minikanren.org/workshop/2020/minikanren-2020-paper10....

I've spent many hours reading Matt Might's website: http://matt.might.net/articles/

I'm not quite in that rough shape but I have several medical conditions and for years I just stared at summaries and "Pay just $40 to read this article" and the article would be a freshman level essay about the sociological implications of illness. Now that sci-hub exists medicine is accessible.

Anybody who wants to take it down is declaring war on the sick and disabled. Shut down Elsevier instead because they're an organization of long corrupt middlemen.

I'm so happy for you!

There's a company that is not public but working in this space, I cannot recall it's name. They use NLP to diagnose patient condition by ingesting raw information/text from medical books/papers. You describe how you feel and any other information that you have in an article, and it gives out possible conditions and prescription.

AFAIK, they still recommended that you go to the doctor, but you could use it as an extra to check the diagnosis yourself.

But their point was they have all the data coming out in new papers, and the system studies it constantly and is always kept up.

What’s the company?

Just this one story justifies the existence of SciHub, and I don't doubt that there are 1000's to match.

wow, vanilla comment but this is just really inspiring. kudos to her and best wishes to y'all going forward.

Thank you! She’s doing great, at six months the doctors said she wouldn’t make it to a year. But she is two now and her retired engineer great grandfather built her a little custom wheelchair that affords her a lot more freedom and mobility. At first she’d only go on the wood floors but has gotten stronger and wheels around the carpet now too. She has a five year old sister and they play together all the time.

I’ve wanted to give comments multiple upvotes before, but this story makes me wish HN had some sort of ‘super favorite’. #PiracySavesLives

At first blush I laughed at the hashtag, but it’s not too far from the truth. With the a la carte model of $30 a paper there is no way she could have read the literature. My wife would read the papers slowly and look up words as necessary.

We read about a surgery that could potentially help our daughter, which the head of neurosurgery declined to do. We then said we’d take her to another children’s hospital (it turns out our insurance actually wouldn’t have covered that, but we didn’t know we were bluffing) and he begrudgingly agreed to perform the surgery. Had to get the expert who is a professor at Washington University to give a second opinion recommending surgery before it happened.

Most of the doctors really didn’t like my wife, there are notes about her obstinance in our daughters file. But our daughter is doing well, and I’m glad I married someone so doggedly persistent.

Elsevier could make a lot of goodwill by adding a 'compassionate support required' checkbox on their download pages.

There is a "favorite" link which adds a comment to a public list of favorite comments on your profile.

My mom bought thousands of dollars worth of journal articles so that she could self-diagnose a serious lung condition that doctors had missed. They ended up studying her case at the Mayo clinic.

Alexandra Elbakyan is a hero.

Wow! this touched me, it's wonderful and I am happy for you.

> It was strange how reticent doctors were to prescribe something and instead just told us she was going to die. If she’s believed to be terminal anyway, why not prescribe a relatively well known drug and see if it helps?

Because according to EBM nothing exists and nothing works unless it's proven with a big RCT.

Yes, it's ridiculous. Especially as in your case.

EBM: evidence-based medicine?

RCT: randomized controlled trial?

How is that doctors miss this? Is it because they don't want to risk their license?

> After asking five different doctors about it, one finally agreed to prescribe it.

Were the other four too lazy/orthodox to read the papers you're referencing? Or they read the papers and still thought it wasn't a good idea? I'm going to presume that the former is the case, unfortunately.

They had “read” them. The first time she mentioned the drug to a doctor he just snippily corrected her on the pronunciation but nothing else. My wife carefully documented everything the paper said in a “Cliff’s Notes” sort of version with links. The next meeting we had with them they were much less hostile, it was like night and day. I guess they were impressed by her careful note taking. Even so the doctor who did prescribe it sort of acted like it was his idea, my wife kind of rolled her eyes and just let him keep thinking that.

The way we think about it is a doctor has what, 15 minutes (if that) to spare thinking about our daughter languishing in the NICU. My wife spent literally all day, all night, ruminating and worrying about her. I had just started a new job, (I was unemployed when she was born!) and honestly poured myself into that position, maybe as a way to avoid living at the hospital (I’m not proud of it but that’s what happened). But it is weird we had to get the pulmonologist to prescribe a medication that’s something the neurologist should probably be prescribing.

Doctor's dislike when patients come in having tried to figure out something about their condition or treatment on their own. It seems to knock them out of their routine.

I have personal experience with this as a patient and a family member of physicians. I wish I didn't know what docs say and think about their patients. It's a really unfortunate characteristic of the US medical system.

It goes further than that, it challenges their ego and the feeling that they know everything better than the patient does. This is not unique to the medical profession, but there the damage is immediate and sometimes fatal.

Is lazy really the right word? I would assume doctors have an incredible amount of stuff to continually read up on and a large amount of patients that would all individually benifit greatly if the doctor read alot of papers about their particular ailment. On top of working large hours. I would assume only specialists would be able to really try to read everything for a patient like that without "skimming"

Or didn't want to take the risk of using a somewhat experimental medicine (perhaps justifiably so, I don't know the details), or maybe the evidence is still promising but otherwise still very thin. Or they just didn't have the time to really research it as they also had dozens of other patients.

There could be any number of reasons; without more details, I think it's quite a leap to immediately assume they're "lazy/orthodox to read the papers".

It's quite a leap unless you have worked extensively with doctors before and seen the behavior first hand too many times to count.

I get why it happens: they have to deal directly with patients who 99% of the time are not research capable and if they claim to be research capable what they really mean is that they've been sharing conspiracy theories on facebook. Doctors build defense mechanisms against the nonsense (authoritative tone, dismissive attitude) that grate on academic sensibilities. They can be slow to come around but eventually they usually do.

And you’re right, that’s exactly what happened. My wife wrote up a set of concise notes with citations and asked if the social worker could forward it to the doctors. We met with the doctors a few days later and they thanked my wife over and over again for the document, and the conversation totally changed from one that felt adversarial to one that felt much more collaborative and productive.

As the doctors cycled out though it sort of reverted to the mean, back to the authoritarian stance you expect from doctors, since NICU doctors were constantly rotating out.

The evidence is thin because there’s very few children with the condition. A good number of them die by holding their breath. Very scary. It’s a complication of an already rare disorder. The medication has been around since 1966 though, it’s clonidine/catapres. The first doctor she mentioned it to just rudely corrected her on the pronunciation rather than give any actual feedback on whether or not it could help.

I think you’re absolutely correct about having dozens of other patients. My wife wrote a long email, that was forwarded to the doctors, citing various articles with links to the medical journals and the doctors couldn’t thank her enough for it. It wasn’t until that happened that someone prescribed the medication for her.

I'm going off my experience with doctors that I know personally. There's definitely a personality type or an attitude there that shuts them off to things that a layperson will bring to them even if it's based on good science (only they haven't studied it before).

Past experience is to blame for that. A lot of doctors blame patients for bringing utter bullshit that they scraped from Facebook or YouTube as the next Gen therapy.

For instance, I have a background in biochemical engineering, my fiancée is a cancer surgeon, 4 cousins are doctors, and another 3 cousins married doctors. Yet the entire family collectively believes in homeopathy, unani medicine (Greek medicine) and other hogwash like cupping therapy, save for a select few. The last time I visited one of my relatives, they were ingesting some ayurvedic (Indian medicine) concoction that was later found to contain arsenic. One of my friends is daughter to two doctors, yet her Dad (a former Indian Army doctor, so not the run-of-the-mill kind) still spouted nonsense on Facebook like "burning Turmeric powder and inhaling it would prevent COVID".

It's easy to understand, after all this, why doctors tend to be generally skeptical of laymen bringing them some new "breakthrough". Not much to do with personality than with what they see as a daily occurrence. Of course, one way to sift the chaff away from the grain would be to demand that patients bring in scientifically published papers, at which point most patients would scoff at you for not supporting their viewpoint.

> "burning Turmeric powder and inhaling it would prevent COVID"

This kind of bullshit is too prevalent around here, sadly. And telling that ayurveda is pseudoscience instantly makes you "anti-national" and what not.

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