An Update on Patrick Volkerding 518
Noryungi writes "Patrick Volkerding, the maintainer of Slackware Linux has posted an update on his health problems on the ChangeLog of Slackware-Current. Unfortunately, it seems his health is getting worse and not better... Again, if you know some specialist in viral infections, contact Patrick ASAP. Hang in there, Pat!" Our original story.
Best of luck (Score:5, Insightful)
Humour (Score:5, Insightful)
Great to see he's kept his sense of humour.
Good luck Pat (Score:5, Insightful)
Well... (Score:3, Insightful)
What does your actual Doctor think of everything that is going on? You do have a family doctor, right?
Keep this up and the next /. post is going to be your Obituary. Not being a troll, but you need to stop with the games and ge tthis fixed.
Bacterial, not viral (Score:5, Insightful)
Which can happen.
Med Labs routinely ignore mouth bateria in samples.
Antibiotics tailored to leave them alone.
Antibiotics don't work on virii, at all.
Needs old fashioned or special antibiotics.
Some heart disease caused by infection.
Still learning how much disease caused by infection.
Doctors don't do unusual very well.
Needs to get lucky with right doctor.
Nothing wrong with defending yourself.
RTFM (Score:5, Insightful)
If he is as sick as he says, _any_ physician would insist on having him hospitalized and having multiple consultants see him (notably, infectious disease and oncology.) He symptoms suggest a progressive disease that requires agressive intervention - and that doesn't mean trials of expensive antibiotics.
He has either failed to see a primary care physician, or he has refused appropriate treatment and admission to a hospital. In either case, as an educated, intelligent man he has made his own decision. Slashdot should not be contributing to his decline by enabling his poor decisions. He needs to be told flat out by his friends that they are not going to work with him until he agrees to admission and workup at a major teaching hospital (which, by the way, will have access to every antibiotic in the world.)
Scary is right... (Score:2, Insightful)
The problem with doctors... (Score:5, Insightful)
No, the problem is that he went to a doctor at the start, who told him nothing was wrong. He repeated that about 10 times. In the meantime, he tried to find out what was wrong with him because 1) he has more time than the GPs and crappy specialists he saw, 2) he cares more than them about his health, and 3) most doctors don't think creatively because they aren't trained to.
As someone who has had a hard-to-diagnose health problem, Patrick's course of action is the only one that works. You have to do your own research, and pester the hell out of doctors to get them to actually try to diagnose you. Otherwise, they either tell you nothing's wrong, or they refer you to someone else who repeats the whole process and refers you again.
Patrick didn't self medicate. He's just trying to get these damned doctors to take his condition seriously.
Re:Jeez... (Score:4, Insightful)
I think the general consensus among medical professionals on the last go round, is he needs a SPECIALIST, not an internest, not an ER doctor. He needs to go to someone with a plan, an Infectious Disease fellow who deals waith these kinds of illnesses. He apparently is near some world class medical institutions, I am not sure why he is not utilizing them.
Re:He found the Oregano oil ... (Score:2, Insightful)
Enjoyment has been tied to improved immune function and when it comes down to it with or without anti-biotics his immune system is what has to kick the bacteria.
From time to time you read anecdotes about people kicking illnesses through humor or just deciding to kick back and have fun on the way out. (I guess, though, those are self selecting, You don't usually hear, "well, I tried that, but it killed me anyway...) Myself, as a kid I once got sicker and sicker for months, despite lots of medical treatment, the turning point for me was the b&w and silent comedies. Can't say for sure that's what did it, but at least it was entertaining. YMMV
Re:Sad, but he's mostly brought this on himself. (Score:3, Insightful)
Re:Hypochondria (Score:1, Insightful)
However, doing self-diagnosis is a bad idea. Panic can set in and cause things to get worse: phantom symptoms, lowered immune system due to the stress, etc.
If he doesn't like or agree with a doctor, he should go to another one. I had to do that because my current doc at the time couldn't figure out what was wrong with me (burning from the waist down for 8 painful months!), nor a neurologist she sent me to.
I finally went to a doctor who happened to be an osteopath, and they look at things slightly differently than MD's do. He figured out it was a back injury and I was making it worse by stressing over it because I was looking up all kinds of weird nerve disorders on the 'net. It turns out my back went out and some nerves were being compressed just enough to cause the pain but not show up in the neuro's tests. The stress caused everything to tighten up more, and it was a vicious cycle. 6 months of physical therapy, and I was almost back to normal.
Anyhow, the point is that doctors can get confused and miss things. But looking online won't help it - it just makes you stress more and you start imagining things or everything becomes a symptom.
Keep going to docs and force them to figure it out. ER docs are also good at figuring stuff out, especially the weird stuff. So if you feel sick, go to the ER.
Keep off the self-diagnosis and med web sites.
Re:He needs to relax (Score:2, Insightful)
Re:Best of luck (Score:5, Insightful)
I'm a doctor at a teaching hospital so we see wierd stuff all the time. I'll give you my sideline quarterbacking of the situation.
First, you have a patient who is trying to diagnosis and treat his own condition. A good analogy would be a newbie blindly editing his/her registry. I know its the "hacker" way, but hacking your own body can be dangerous. It's difficult to reboot or reformat the body as a system.
Second, you can't have pulmonary "pops." If you pop a bleb, you develop a pneumothorax... and you are sick as poo. This can be seen on a chest X-ray and typically would need a chest tube to prevent respiratory failure.
He talks about going to Mayo... and multiple ERs. Doctor-shopping raises multiple red-flags.
His sedimentation rate (ESR) is normal. It is very, very difficult to have an infection or inflammatory process with a normal sed rate.
Obviously, I have not examined this guy. He might have a new disease that completely goes against science as we know it. But people come to us for rare medical problems all the time... we love it. When we find something rare, we jump around giving each other high-5s. We spend tons of research and government money trying to figure out these rare case. However...
I'm just not buying in this case.
I was getting freaked out too...READ THIS (Score:3, Insightful)
It turned out that My GALL Bladder is pretty much DOA , The coincidental timing with my prostatits was just bad luck.
I also have Reiter's Syndrome [mcw.edu] which can cause ALL Kinds of seemingly unrelated symptoms (INCLUDING HEART) AND IT generally goes hand in hand with prostatits in younger (under 40) men,
Mine was caused from a very serious bout as in nearly dead, case of Campylobacter.
Now I have just regined myself to taking lots of NSAIDS, for the arthritis part (but as many broken bones as I ve had its hard to tell if its from those or this) and dealin with a bout of the big P every other year or so. he heart issues are serious but treatable.
Re:Try this (Score:2, Insightful)
No wonder he didn't reply to you.
Chris
Re:Good luck Pat (Score:2, Insightful)
Re:RTFM (Score:4, Insightful)
I think it's great that we've taken the tricky work of medical care out of the hands of doctors and given accountants the authority to make all the life and death decisions.
Pretend they are technical support... (Score:5, Insightful)
Think about computer technical support, as an example we are all familiar with. They are paid to solve your problem according to their standards as quickly as possible, then get the the next call.
Physicians are not different, due to hospital and insurance policy.
If you act belligerent, and insist that you know what's wrong and that they are to follow your orders, they will likely turn a deaf ear to your complaints, do the minimum necessary that won't get them in trouble, and hope that you bug some other physician next time.
Further, like a tech, if they hear that you are searching for the right doctor to diagnose you according to your desires, they will all the more easily dismiss your problem. Firstly because you may well be a hypochondriac, secondly because they know you won't stop until you're treated, and thus they don't need to be burdened with the thought that you might take their advice and then die.
The best way I've found to deal with people who essentially must operate according to a 'script' or 'SOP' is to approach them with my most major complaints/symptoms, avoid using any terminology that might show I know more than I'm letting on, and let them go through their normal procedures.
Doctors (and techs) are getting more used to the idea of self-help, so it can help sometimes to say something like, "I looked my symptoms up online and [reliable medical website] suggested something called 'technical term'. Is there a way to prove that I don't have that?"
The reason physicians and techs are so jaded is because in the vast majority of cases, the doctor hopping, belligerent, advice ignoring patient/client is wrong. Further, if they aren't willing to go through your normal procedure for knocking off the most obvious problems, there's no way in this world that they'll diagnose you for something that is rare.
The fact that your are doctor hopping and hospital hurts you more than it helps. At the minimum you need to get a copy of your medical record from every provider you've visited and then choose a doctor/health system and stick with them. Changing doctors is resetting your medical care. A new doctor has to start from scratch.
Lastly, make sure the 'trouble ticket' isn't closed until you are satisfied. If the doctor gives you a clean bill of health, then ask them why you still have these symptoms. If they won't give you a clear answer, then ask to be bumped up to the second tier of support. There are only three reasons why you might continue to have these symptoms, and ask them point blank which one it is: 1) You have an unresolved medical problem or 2) You are imagining your medical problem or 3) You are considering something 'normal' to be a medical or resolvable issue (ie, there is no treatment)
Tell them this is causing a quality of life issue, and if the problem is 1 then you need it to be resolved. If it's 2 then ask them to send you to a qualified psychologist (who can rule out or resolve hypochondria). If it's 3 then ask them who can help you resolve your pain and suffering so you can be productive again.
I'm sure I don't have the whole story from this side of the issue, nevermind the doctor's side of the issue, so I can't really weigh in on this particular case. My gut tells me that if this was a serious (ie, death at the door) case, then portions of his body would be failing in a detectable way. Especially if he's had this 'bacterial infection' for this long. Perhaps systems are failing and doctors haven't been given the chance (or time before switching) to find them. Funny thing about 'normal' levels of [measurement x] is that normal is a large band, and while you may fall in that band, it may not be normal for you. Until you have a comprehensive case h
Re:He needs to relax (Score:5, Insightful)
I can't disagree with this strongly enough. This is very true for common illnesses, but very untrue for rare ones. I should know: I was recently diagnosed with Hodgkin's Lymphoma, a rare cancer of the lymph system that about 8,000 people will be diagnosed with this year in the US [1]. I had the symptoms of it (swollen glands, itchiness; ie very nonspecific symptoms) for nigh on 3 years, and had presented repeatedly to multiple doctors, all of whom missed the forest for the trees. I knew something was wrong with me (even, I think subconciously, that I had cancer), but I believed the doctors when they diagnosed allergies, or mononucleosis, or some other prosiac illness. It was not until the disease had spread extensively until it was drop dead obvious that something was really wrong.
I agree with the spirit of your post: he should let the doctors do the diagnosing. However, he should very strongly try to find the right doctors. Just like programmers, there's a huge disparity in talent between the good and the mediocre. Luckily, I found some good ones (I work at Mayo Clinic), and I'm doing much better now.
-c
[1] http://www.lymphomainfo.net/hodgkins/incidence.htm l [lymphomainfo.net]
Re:He needs to relax (Score:5, Insightful)
Dude. The other day, a porn site popped up on my computer. Just popped up ; I didn't click anything. I ran Norton Anti-virus. I ran AVG. I ran ad-aware and spybot. I checked Windows update, I rebooted, I swore. Everything told me my computer was fine. Clearly it is, and I am mistaken.
Re:Best of luck (Score:3, Insightful)
Re:Well... (Score:2, Insightful)
I tend to agree with the GP, though. Continuity of care is essential to getting treated. Between his posts, I can't tell if Patrick has ever seen the same doctor twice. When you see a doctor, they treat the most likely cause, and schedule a follow-up. If you aren't making progress at the follow-up, then they move on to other treatments. If you go to a different doctor in the meantime, you start the process over, and none of them really know your history.
I am a Slackware user, and I have a lot of respect for Patrick. It is quite possible that he is slipping through the huge cracks in our medical system, and that would be tragic. It is also possible that his do-it-youself approach and his lack of faith in his doctors is making him not take the best course of action, and it may kill him. I'm not in a good position to tell which of these scenarios is more likely.
I hope he finds a good doctor that he respects, and who takes an active interest in him. That way they can work together instead of fighting each other. All I can do is sit back and watch.
Re:Holisitic remedies quack quack quack (Score:1, Insightful)
www.quackwatch.org
Re:Best of luck (Score:2, Insightful)
Re:Best of luck (Score:5, Insightful)
>diagnosis and treat his own condition.
This is usually the only way to get something fixed these days. Most doctors are very resistant to doing anything that could be called diagnosis. Their answer to everything is usually to ask you a few questions, interrupt you after hearing the first sympton they can connect with some common malady, and then decree what's wrong with you. As in Patrick's case, it's common for the doctors to ignore facts which don't fit (after all, how could stupid patients possibly know anything about all that hard "doctor stuff").
Most doctors seems to diagnose everything I get as "something that's going around" and prescribe antibiotics. I usually have to do their research for them and then come back for another visit, demanding the specific tests needed to diagnose the problem (which sometimes requires moving to a more cooperative doctor), and then insist on proper treatment based on the test results.
Fortunately, many medical texts are available online which contain the information needed to self-diagnose. But you still need a competent doctor to perform or authorize tests and prescribe treatments.
Over the years I've found it very rare to meet doctors who actually take an interest in diagnosing an illness by using specific tests to determine the cause instead of just prescribing antibiotics. They are out there, however, and worth looking for. Just don't expect to find one easily. Most doctors seem to be lazy, disinterested, or simply not capable of diagnosing patients. Sturgeon's rule (90% of everything is crap) applies to the field of medicine as much as any other field.
When I find a doctor that resists doing tests that could result in a diagnosis, in favor of randomly prescribing common drugs, and who argues against "doctor shopping" when a doctor is obviously wrong, it raises major red flags for me as a patient and is a good indication that a better doctor is needed ASAP. I hope Patrick can find some competent doctors in time. They're rare.
Re:Best of luck (Score:4, Insightful)
I think that's a bad analogy: if he was treating himself, it might be like editing the registry. But recording symptoms and diagnosing himself is more like reading (and trying to understand) error messages. That's what even a newbie could and should do. -- Especially if his hacker friend is too busy to listen to his problems...
My best best wishes to Patrick. I hope he gets well soon.Re:Best of luck (Score:2, Insightful)
Even if what's wrong is not really something life threatening, it is clear that he thinks it is and he is terrified because of it. That should be addressed by the doctors he goes to. Even if it is not rational, or medically justified, his fear should be addressed as a serious symptom of whatever is wrong. This is no different than treating pain. Pain is subjective, it is a symptom of something else, but when it becomes debilitating it is treated directly. Fear should be no different.
Re:He needs to relax (Score:3, Insightful)
Re:recent trend (Score:3, Insightful)
I have noticed this too. Now before I say what I'm about to say let me just preface my comments by saying that I'm a conservative with a lot of doctors in my family, and in the past I have been staunchly against socialized medicine and gov't involvement in medicine. However recent events involving my mom's medical condition have led me to change my views.
A few years ago my mom was having lots of problems and went to her general practitioner (g.p.). The gp wanted to do all kinds of strange tests and procedures that didn't seem to really relate to the symptoms she was describing (my dad is an ophthalmologist so he had some idea that something strange was going on). It seemed to me that the doctor was trying to do procedures and tests that he knew my mom's insurance would cover and that he would get paid for. This went on for a while and my mom never could find out what was wrong.
A couple of months later we were in Rome and my mom collapsed in St Peters Basilica. We took her to an emergency room in Rome and a young doctor talked to her and my dad and asked them what her symptoms were. He seemed genuinely interested and listened to what she had to say. Since she had described symptoms that seemed to relate to circulation and her heart he did the obvious: he did an ultrasound of her chest area and found that she indeed had a circulation problem and isolated exactly where it was. Why didn't the American doctors think of doing this simple and obvious test?!? Well I may be cynical, but I believe they didn't do it because there was no money in it for them to do an ultrasound since it probably wasn't on the HMO/PPO's list of 'approved' tests that the doctor would get paid for.
By the way, the italian ER doctor gave my mom some medicine and advice about how to proceed when she went back to America, and didn't charge her a dime. It was incredible to have a doctor genuinely care about a patient and do everything he could for her, and have the issue of money not even come up at all (although my parents were willing and able to pay if they had been asked to).
After returning to America my mom was able to explain to her American doctors what the problem was and is now able to actually get proper treatment.
Now don't get me wrong, there are many good doctors in America, however their attitude towards their patients is affected by the environment that they do business in. For example, one of my relatives (who is a doctor) told me that with HMOs your doctor ceases to be your advocate and becomes your adversary. Why? Because of capitation; the doctor gets paid a set amount per month and if more patients than usual come in one month then his profit per patient is lower. It is in the doctor's best interest (business-wise) to see you as little as possible because he gets paid the same whether you're there or not. This and many other rules that insurance companies force upon doctors force the doctors, no matter how much they want to care for their patients, to view the patient as an adversary that is costing them money.
I don't know if socialized medicine (a la 'Hillary') is the answer, but certainly our current medical/insurance industry is a problem.
Re:Best of luck (Score:2, Insightful)
Re:recent trend (Score:3, Insightful)
Re:Best of luck (Score:5, Insightful)
If I were to see him and if I were to decide that he didn't have some horrible medical illness... would he believe me?
I would likely be included as one of those damn, nonbelieving doctors in his next posted update. Neither he nor I would gain anything from that.
Re:He needs to relax (Score:1, Insightful)
Re:Best of luck (Score:5, Insightful)
When I read this I was reminded of what my abnormal psych professor said at the start of class. "Don't start reading ahead. Don't just open the DSM-IV and start reading about wierd psychological problems. You're all perfectly normal and sane. When we study obsessive compulsive disorders, all of you are going to start thinking, 'I have these symptoms. I have OCD!'. You don't. When we start start reading about schizophrenia and people talking to themselves, and hearing voices, you're going to think, 'Wow! I talk to myself all the time. I'm schizo!'. You're not. None of you have the training or experience to diagnose anything. Don't act like you do."
Everytime you change doctors, you're starting the diagnosis over at step one. When you come in and say "I have disease X. Give me xyzzy, that new perscription drug I've seen on tv." The doctor thinks, "hypochondriac".
The reason he initially thinks it's "the thing going around", is because 90% of the time it is. Only when that treatment fails, will the doctor move off that. Instead of actually going back to the doctor in two weeks like he suggested, you go to another doctor who says, "Hypochondriac. Take the antibiotic and come back in two weeks if it's not working." Instead of moving to step 2, you've decided to shop around until you find someone who is willing to start at step 6. No wonder it's hard for you to find a doctor.
Oregano Oil is interesting (Score:3, Insightful)
Usually what you see sold in places like vitamin shops etc is a concentrated oil diluted with olive oil. Typically, you will get a 1 or 2 percent solution. And it is relatively high priced.
That said, you can order reasonable concentrations online if you google around for a while. Note that these are usually marked for aromatic use only [e-scent-ials.com], as the concentration is regarded as too intense for actual internal consumption.
There is enough spread that someone could find a profit margin in there someplace.
Why the mod-down? (Score:2, Insightful)
Re:Best of luck (Score:3, Insightful)
Funny, that seems to apply to a good proportion of the doctors I have seen. Things they (doctors) have not diagnosed when symptoms were obvious to someone in their field (or failed to send me to another doctor) have included: TMJ problems manifested as ear pain, went to ENT, nothing wrong), pinched nerve in neck (neurologist said nothing wrong), etc. These were eventually treated properly by GOOD doctors-who were incredulous that the original specialists missed the problem. The only reason they were diagnosed by doctors?-because I switched doctors and came up with the proper diagnosis at least in part.
Sorry, but most medicine is merely following flow charts. Sure, experience and training is useful (how you become an expert), but if you miss an important piece of information (or won't consider it) your diagnosis will be wrong. And no better than an "untrained" person who has a clue.
Currently with my known medical problems, I know more than most specialists. In other words, any advice a doctor gives me will likely be WRONG. Frankly, if I didn't need them for presciptions and tests, I wouldn't go. Hell, if I want to get better treatment for migraines, for instance, I would have to travel out of Columbus, OH to do it, and Columbus isn't a small town. AFAIK, I have exhausted the "useful" knowledge locally. The best ones realize they don't know everything and say this-they don't use you as a guinea pig without your consent.
Some other points:
"The reason he initially thinks it's "the thing going around", is because 90% of the time it is. Only when that treatment fails, will the doctor move off that."
If that is his sole reason, he/she is a poor doctor. I mean, that is no better than saying, I think I have symptoms x, y, z and need drug A.
"Only when that treatment fails, will the doctor move off that. Instead of actually going back to the doctor in two weeks like he suggested..."
More likely, the doctor doesn't know one way or another and is unwilling to admit that. So, give a drug and get the patient out the door. Come back in two weeks if it is worse. As far as I am concerned, that is code for "I don't give a damn" or "I can't find anything wrong, so it is all in your head, quit bothering me". In simple terms, the reason/rationale for the treatment needs to be EXPLAINED. Is this the best way?, the cheapest?, the quickest?, etc. If doing nothing is the best treatment, say so.
Unfortunately, I have had a heck of a lot of doctors (most of them) treat this job more as a help desk position (get them out as quickly as possible whether or not the problem has been solved...) than a healing position. I could accept that if they were charging me help desk rates. But they are charging me consultant rates (hundreds of dollars an hour equivalent) and I expect GOOD service for that price.
Re:You get what you pay for. (Score:5, Insightful)
In a world where 1% of the people provides food and another one prevents housing, why can't you get free healthcare in America. It would cost a few percent of the war in Iraq (which will flood the hospitals in the years to come, even if the fighting would stop now).
Anyway, the repuplican party is showing the whole world that a country led by companies and bureaucratics can be equally bad to those regimes you just mentioned. It just takes most of the public in the US some time to catch up with the rest of the world on this.
And as a last point, yes, I would go to my doctor, and if he can't fix it or points in the direction of a specialist, THEN I would go to that doctor. How the hell should I know what I've caught if I just feel sick. I would check the diagnoses of the doctor as well though.