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Science Software Linux

An Update on Patrick Volkerding 518

Posted by michael from the medic-alert dept.
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.
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An Update on Patrick Volkerding More

An Update on Patrick Volkerding

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  • Best of luck (Score:5, Insightful)

    by Anonymous Coward on Friday November 26, 2004 @10:33AM (#10924239)
    I, like most of slashdot, send my well-wishes.

    • Re:Best of luck (Score:5, Insightful)

      by BoldAC ( 735721 ) on Friday November 26, 2004 @11:30AM (#10924654)
      Okay, I send my best wishes... but I am worried.

      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.

      • Re:Best of luck (Score:3, Interesting)

        by Davak ( 526912 )
        Supporting evidence:

        ftp://ftp.slackware.com/pub/slackware/slackware-c u rrent/PAT-NEEDS-YOUR-HELP.txt [slackware.com]

        Rodney has no ability
        to directly admit me to a hospital without first sending me to an
        infectious disease MD there who would have to agree with all of this.
        I have an appointment on Friday.

        What did the ID physician say?

        All the cases of Actinomycosis I have treated have been pretty easy to diagnose.

        Let's just assume for one moment... that this is not physiological possible. (Supratentorial, mental,

      • Re:Best of luck (Score:3, Insightful)

        by Vellmont ( 569020 )
        So you honestly think you can make a judgement that this guy isn't sick (and is just a nut) from two postings from the patient on the internet? Why is it there's this heavy tendency among some doctors to not believe the patient? Perhaps his self diagnosis is in error and his own attempts at doctoring are poor, but from his own descriptions it sounds like there's something wrong with him and his doctors can't figure out what it is.

      • Re:Best of luck (Score:5, Insightful)

        by vortimax ( 409529 ) on Friday November 26, 2004 @12:24PM (#10925177) Homepage
        >First, you have a patient who is trying to
        >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:5, Interesting)

          by madmaxx ( 32372 ) <mx@warpedvisions . o rg> on Friday November 26, 2004 @01:51PM (#10925953) Homepage
          I actually had a much different experience, but it was at a children's hospital that was also used for training. The doctors there worked with us (the parents), as if we were part of their team. There were at least a dozen doctors, and each of them would walk us through test results, and didn't ignore the "what about {n}?" questions, to the point that new tests were ordered when things appeared to be missing.

          As the doctors were baffled by his condition, they were open to our suggestions and ideas. We were even able to review his chart (and ask questions) whenever we wanted (which is a lot different than most adult-hospitals I've been to).

          What impressed me was the huge set of possibilities that the doctors had to consider in their decision tree. Minute facts about our son's case would shift the tree significantly, and the doctors were able to handle this large data set (and the changes) with ease. Their domain is many times more complex than software development, based on the size of the data, the quality of tools, and the integrity of the data logging (people tell many stories). Even better, these doctors were able to make me feel like an equal in a very difficult situation. That in itself is a hard problem.

          Over the course of our son's time in the hospital, his condition was characterized in 3 ways. The first two didn't sit well with us, as we had experienced his episodes (heart attacks) first-hand. The doctors trusted us that the diagnosis didn't seem to fit the experience, and they persisted in asking us questions, and analysing the test results until something fit. It was amazing.

          I've had other hospital experiences that were much worse, but the good ones are out there.

        • Re:Best of luck (Score:5, Interesting)

          by BoldAC ( 735721 ) on Friday November 26, 2004 @01:57PM (#10926014)
          You describe a major problem in medicine today... I call it the "acute care" syndrome.

          People get sick (usually with a viral illness), they go to the doctor and want a quick fix. The doctor is given two choices...

          1. "It's a virus." No antibotic and educate the patient as much as possible.
          2. "It's an 'infection'" and get the patient out with an antibotic.

          So if doctors do the right thing and do #1, then the patients are unhappy. Doctors get tired of fighting for no reason and get bitter. This happens everyday in every "acute care" center in the US.

          Now think of this in relation other common diseases that doctors can't fix. They can either prescribe different medications or they can try to educate the patient.

          The only time education is appreciated and believed is when it comes from a physician that you know and trust. But who has a doctor (dentist, lawyer, mechanic, etc.) that they personally know anymore?

          Yeah, it's sad for us too...

        • Re:Best of luck (Score:5, Insightful)

          by coaxial ( 28297 ) on Friday November 26, 2004 @02:07PM (#10926088) Homepage
          Fortunately, many medical texts are available online which contain the information needed to self-diagnose.

          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.

          • Re:Best of luck (Score:5, Interesting)

            by Kismet ( 13199 ) <pmccombs AT acm DOT org> on Friday November 26, 2004 @04:04PM (#10926925) Homepage
            Hear, hear.

            I once got sick enough where I thought I was paying for my sins before I died. I got on the Internet to see what my problem was, and had myself convinced that I had acute pancreatitis.

            So I went to the doctor, with a semi-knowledge of acute pancreatitis, and described some of the symptoms I had read about. What was the result? Well, the doctor thought I might have acute pancreatitis. We did a rather expensive battery of tests to check for pancreatitis, kidney stones, gallstones, etc. etc. Nothing turned up.

            By that evening I felt fine. It turned out to be some simple gastritis (probably due to some NSAIDs I was taking - without doctor supervision - for my tendonitis).

            I sent myself to the ER because I tried diagnosing my own problem. I was fine, but I had to pay the price. It ain't cheap.

          • Re:Best of luck (Score:3, Insightful)

            by winwar ( 114053 )
            "...None of you have the training or experience to diagnose anything. Don't act like you do."

            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 i

      • Re:Best of luck (Score:4, Insightful)

        by qcomp ( 694740 ) on Friday November 26, 2004 @12:24PM (#10925178)
        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.

        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.

      • The Reality of the Medical System for non-MDs (Score:5, Interesting)

        by cquark ( 246669 ) on Friday November 26, 2004 @12:33PM (#10925246)
        As you say, you're an MD, which gives you a different perspective on health care. For example, you know many MDs personally and indirectly through them have a network to many other MDs. Don't you doctor shop too, to find the best person you know? The rest of us don't know any MDs personally, so to find the best doctor, all we have are recommendations from friends who aren't MDs, which are sometimes useful, but generally we actually have to go in for a visit to see how good someone is.

        Also, how long will your doctor see you for? The typical visit time for my HMO is 2 minutes, and I've never personally been able to keep a doctor in the room for 5 minutes, even when it took longer than that span to explain my problem.

        I've been in Patrick's position, having a chronic condition where I went through over a dozen doctors who were completely useless. All the doctors seemed to have the same set of flowcharts for diagnosing me and never listened to what I said. Each GP did the same tests, sent me to the same types of specialists, and gave up at about the same time. They were like bad help desk personnel reading from the same script.

        Fortunately, I met someone with the same problem and went to her doctor (that she'd found through a multi-year search like the one I had been doing). Her doctor was outside my HMO and quite expensive as a result, but well worth the cost as he spent the time to talk with me and learn my medical history, diagnosed the problem correctly, and prescribed a successful set of treatments.

        Perhaps you would know the right person to go to immediately, but most of the rest of us are trapped in the HMO system without your connections to find the right person or to convince most MDs to spend more than a couple minutes with us.

      • Re:Best of luck (Score:5, Interesting)

        by InternationalCow ( 681980 ) <[moc.cam] [ta] [lesneetsnaveciruam]> on Friday November 26, 2004 @01:09PM (#10925608) Journal
        I second this. See my previous posts in this regard. A mitral valve prolapse in itself in unspecific. However, some signs noted here (and there I politely disagree with the parent post) MAY point in the direction of bacterial endocarditis. One can have that without elevated ESR. CRP should be elevated too. The way to diagnose this is cardiac ultrasound and multiple blood cultures taken when running a fever of more than 38.5 deg centigrade. That said, I agree with the parent in the red flag department. The self-diagnosis and doctor-hopping don't help. As noted in the previous Patrick Volkerding thread, he should stick with one doctor and let him/her check things out. If no abnormalities are found, the chance of there being a new rare disease is small. I know, because I have indentified several rare "new" diseases myself. Take my word for it: that is non-trivial and requires much double- and triple-checking. I'm worried, too. Meanwhile, my best wishes for a speedy resolution.

        • Re:Best of luck (Score:5, Informative)

          by BoldAC ( 735721 ) on Friday November 26, 2004 @02:18PM (#10926170)
          Quote: "One can have that without elevated ESR."

          I completely agree... thanks for clearing that up. I'll even support your clarification for you. :)

          http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cm d= Retrieve&db=pubmed&dopt=Abstract&list_uids=9108181

          The objective of this study was to evaluate the sensitivity of C-reactive protein (CRP) elevation compared to erythrocyte sedimentation rate (ESR), leucocyte count and thrombocyte count in the diagnosis of infective endocarditis (IE). It was designed as a prospective study of suspected episodes of IE in adults in tertiary care at a university-affiliated department of infectious diseases. In 89 episodes of IE, CRP was available from the start of treatment. Median age was 66 years, 45 were men and 44 women. Median CRP concentration was found to be 90 (range 0-357) mg/l with only 4% normal values. Episodes involving native valves had higher CRP than episodes occurring with prosthetic valves. Staphylococcal origin, short duration of symptoms, short duration of fever and highest recorded temperature all correlated to higher CRP levels. The CRP response was also prominent among patients > 70 years old. Among non-responders, a few cases with simultaneous cirrhosis were noted. ESR was less sensitive than CRP, with a normal level in 28% of the episodes. It was concluded that CRP determination is superior to erythrocyte sedimentation rate, leucocyte count and thrombocyte count in the diagnosis of infective endocarditis.

      • Re:Best of luck (Score:3, Informative)

        by Fnkmaster ( 89084 ) *
        While I appreciate some of your points and have no reason to disagree with any of your medical analysis, your points about self-diagnosing and doctor-shopping are way off base.

        I have gone through this several times with my mother, who has had colon cancer for about 4 years now. In her case, the initial diagnosis was not the problem, that was crystal clear. But when it came to treatment - yes, we did LOTS of doctor shopping and had multiple independent doctors (who were not active clinicians anymore) work

      • Re:Best of luck (Score:3, Informative)

        by 53cur!ty ( 588713 )
        Please excuse my sarcasm and distaste in advance.

        Patrick, don't listen to this #$%@ doctor, keep reading and fighting for your health. If you are reading this patrick please remember to remind your doctor's you have a brain, and read up on patient rights. If you get really frustrated ask to speak to the Hospital Administrator the next time you are in the ER. Nothing says action like calling the Money, I mean boss. If it is the weekend ask for the nurse or doctor admin that is covering the hospital (not

    • Re:Best of luck (Score:3, Interesting)

      by francisew ( 611090 )

      No clue how to reach Pat, so I'll assume he will be thoroughly reading the responses to the post. I understand his email would otherwise become unuseable.

      I noticed last week that in British Columbia (Canadian west coast), a tropical fungal infection has been on the rise. It's often misdiagnosed, and it's been a bit of a problem in B.C. recently.

      Take a look: CBC story from 23 Nov 2004 [www.cbc.ca], and CBC story from 25 Nov 2004 [www.cbc.ca].

      Cryptococcus neoformans infection seems to cause serious lung and CNS problems. It's a

  • Humour (Score:5, Insightful)

    by balster neb ( 645686 ) on Friday November 26, 2004 @10:34AM (#10924248)
    "Netcraft does not yet confirm it"

    Great to see he's kept his sense of humour.

  • Good luck Pat (Score:5, Insightful)

    by Gothmolly ( 148874 ) on Friday November 26, 2004 @10:36AM (#10924267)
    Pat is one of the heros of the Linux movement, like Donald Becker, or Andre Hedrick, people without whom running linux would be an impossible task. Pat, good luck, hang in there!

    • Re:Good luck Pat (Score:2, Insightful)

      by phaln ( 579585 )
      Slackware is the distro that got me interested in Linux in the first place. Best of luck my friend, and I send you all the best wishes for a speedy recovery.

  • Well... (Score:3, Insightful)

    by Blue-Footed Boobie ( 799209 ) on Friday November 26, 2004 @10:38AM (#10924283)
    It seems like you keep jumping around to all the different ER's in the area...

    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)

    by wa1hco ( 37574 ) on Friday November 26, 2004 @10:47AM (#10924346)
    He thinks normal mouth baterial got into his lungs.
    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.
    • That's the longest haiku I've seen in a long time.

    • Re:Bacterial, not viral (Score:5, Interesting)

      by Anonymous Coward on Friday November 26, 2004 @11:15AM (#10924555)
      For what it's worth I spent 12 years in psych treatment, under the care of docs and on various antidepressants and psych drugs because my constantly low energy levels were put down to depression. I felt like shit, the world felt like shit, and it was all put down to me not wanting to take part in life.

      Then my GP retired, I picked up a new one who gave me a going over, and it took him 5 minutes to diagnose a chronic low level tonsil infection. You have no idea how good it's felt since I had those fuckers out. 12 goddamned wasted years because doctors couldn't be bothered with the simple things.
    • so it's best to visit as many doctors as possible, sooner or later he will find one, that *knows*

    • Re:Bacterial, not viral (Score:5, Informative)

      by euthman ( 209060 ) <uthman@airmail.net> on Friday November 26, 2004 @11:39AM (#10924762) Homepage
      Medical laboratories do not "routinely ignore mouth bacteria in samples." Bacterial endocarditis is diagnosed by blood culture, and any bacterium that grows in a blood culture is dutifully reported to the doctor.

      The only time we don't report out normal mouth bacteria is when we are working with a specimen from, uh, the mouth.

  • he scares me (Score:3, Interesting)

    by Anonymous Coward on Friday November 26, 2004 @10:48AM (#10924350)
    I hope he was cynical when he said this:
    "Anyway, I'm still hoping to get the treatment that I'm sure I need, but if there's an insistance on clinical proof first and treatment second, the proof might be found at autopsy time."

    • Re:he scares me (Score:3, Funny)

      by kfg ( 145172 )
      I hope he was cynical when he said this:

      Of course he was, but then so was B. P. Roberts when he had "I told you I was sick" inscribed on his crypt.

      Cynical humor is the best way to stay sane when you're dead.

      KFG

  • He found the Oregano oil ... (Score:4, Informative)

    by puzzled ( 12525 ) on Friday November 26, 2004 @10:48AM (#10924356) Journal


    At least he found the Oregano oil ... that stuff is like swallowing napalm as far as any bacterial/yeast stuff - it'll pretty much toast anything bothering you in about forty eight hours. Can't understand the part about it tasting good, however, as concentrated Oregano oil *burns* like the hottest hot sauce you've ever seen and it keep on burning for *hours*. You put it in a gel cap and swallow with *a lot* of water.

    Hope Patrick is feeling better soon - cardiac stuff is scary++ and the things he describes are going to cause him long term troubles even if he does recover :-(

    • Well, if you want to bring up anecdotal cures, I'll suggest stocking up on comedies from the black and white era, especially the old silent ones. You may have to visit a film archive and rent an 8mm or 16mm, but you won't get a better laugh out of the lame stuff circulating these days in place of comedies.

      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 a

    • Pure Oregano oil has some interesting properties [thepowermall.com]. Initial research looks promising [businessweek.com], with much more to be done. And like anything else, to get large quantities of the essential ingredients directly from the herb requires that you eat a pound or two of the stuff consistantly on a daily basis.

      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 reaso

  • He needs to relax (Score:5, Interesting)

    by inkey string ( 35594 ) on Friday November 26, 2004 @10:54AM (#10924391) Homepage
    This man is very intelligent, and does his job very well.

    Unfortunately, these advantages can quickly turn into a liability. In the same way that a doctor may end up losing his shirt when he starts daytrading, experience and competence in one area does not necessarily translate to the next. Confidence however, generally does.

    He's frequently using medical terms in very poor "context" for lack of a better expression. While technically appropriate, it ends up reading more like an essay written by someone who used a thesaurus too often without knowing exactly what the words mean.

    He has been to many doctors, and all of them have found little to nothing wrong. This is drastically different from his own assessment of looming death. Statistically, from the number and variety of doctors he's visited, a false negative at this point is incredibly unlikely. As the saying goes, when everyone else is wrong, you're probably wrong yourself.

    Yes, it is important to verify information and diagnoses given to you. But it isn't critical evaluation to assume a conclusion from day one, and stick to it regardless of multiple, consistent, informed opinion.

    But then again, if he ends up dying from some bizarre rare disease, I'm going to feel pretty bad about this post.

    • Re:He needs to relax (Score:3, Interesting)

      by Anonymous Coward
      that may be true but ive read many horror stories of people going to tons of doctors and not getting diagnosed, then finding out they did have a problem and it was fixable but its now too late

      check out http://www.nnff.org/ [nnff.org]

      its a site filled with stories from survivors of that flesh eating disease.. most of the stories talk about going to several doctors and not being diagnosed correctly until they're almost dead

    • Re:He needs to relax (Score:5, Interesting)

      by RangerElf ( 32760 ) <gustavo.cordova@gmai[ ]om ['l.c' in gap]> on Friday November 26, 2004 @11:17AM (#10924572) Homepage
      But then again, if he ends up dying from some bizarre rare disease, I'm going to feel pretty bad about this post.

      Yes you will, because you know --even if you don't admit it-- that the medical industry in the US is very, very out of touch with the actual needs of people, and more in touch the the "needs" of big pharma.

      I've seen it first-hand, with the death of my brother-in-law, what doctors do in order to not make "controversial" actions, and not make a wrong prognosis (any prognosis, actually).

      So, what's happening? No hospital will take Patrick in without a definitive diagnosis, and no doctor will make the diagnosis without proof, and the proof is inside Pat right now (biopsy), so it has to be obtained in a hospital, and no hospital will take Patrick in without a definitive diagnosis... (ad nauseam).

      It really sux to be in his situation right now, I hope he finds a real MD which will listen to him, and make actual decisions.

      Hang on Pat, you'll find him soon enough.

      -gus

      • Re:He needs to relax (Score:3, Insightful)

        by Bastian ( 66383 )
        Frequently the problem isn't the needs of the big pharmaceutical companies or what have you. It's that nowadays one of the biggest driving motives for a doctor is to not get sued. When you go into the hospital, you are most likely going to get handled in a very by-the-book, mechanical manner, and this is because stepping out of line even a little bit looks terrible in court.

    • Re:He needs to relax (Score:2, Insightful)

      by Vellmont ( 569020 )
      Maybe you've never been through the medical industry before, but stories like these are all too common. Doctors don't like to admit when they don't know something, so the default answer becomes "there's nothing wrong with you". Has he overstepped his bounds and tried to self-diagnose? Well yes, obviously. But then again it sounds like that's his only option at this point. The health industry hasn't been able to help him, so he has to force them to help him by continued pestering.

    • Re:He needs to relax (Score:5, Insightful)

      by cmason ( 53054 ) on Friday November 26, 2004 @12:03PM (#10925002) Homepage
      He has been to many doctors, and all of them have found little to nothing wrong. ... Statistically, from the number and variety of doctors he's visited, a false negative at this point is incredibly unlikely.

      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)

      by Twylite ( 234238 ) <twylite&crypt,co,za> on Friday November 26, 2004 @12:10PM (#10925065) Homepage

      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.

      • 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.
        It is only in your imagination, you pervert!! ;-)

      • Re:He needs to relax (Score:3, Interesting)

        by bigjocker ( 113512 ) *
        You could not be more insightful.

        My brother has a problem with his inmune system that went unnoticed by doctors for a long time. He has been in and out of clinics his whole life. At one point he developen an infection in one knee that wouldn't stop with anything, even as he was being treated on the best clinic in town (the same he went to all his life). The knee problem only got worse and worse, even after being for over a month in the clinic.

        Thank God my parents are biologists, and took the task to thems

  • Re: (Score:2, Interesting)

    by account_deleted ( 4530225 )
    Comment removed based on user account deletion

  • Check him in (Score:3, Funny)

    by LiquidCoooled ( 634315 ) on Friday November 26, 2004 @10:56AM (#10924402) Homepage Journal
    Lots of people are saying he should be checking himself into a clinic.

    I personally think he should be checked into CVS.

    Thats way, at least we have a backup..just in case :(

  • recent trend (Score:5, Interesting)

    by untaken_name ( 660789 ) on Friday November 26, 2004 @10:56AM (#10924404) Homepage
    I've noticed that in the last few years (maybe it's just my perspective, I don't know) doctors seem less and less likely to actually listen to their patients. I have recurring tonsilitis that I get at least once a year and usually more. I have been going through this since I was 6, when the doctors refused to take my tonsils out even though my mother wanted them to. Now the blood vessels are too big to make it a safe operation. Anyhow, I know what needs to be done and what I am suffering from, as I've been dealing with this for 23 years. However, I find that I have to make appointments with 3 or 4 doctors before I find one that listens to me at all. The others will go 'uh huh, uh huh, yeah, uh huh.' Then they give me some test for strep throat or send me away with a low dose of penicillin or something else that doesn't help me get better. Why is it that even if we use technical terms, doctors won't listen? Mr. Volkerding clearly at least has *some* idea of what he's talking about, and I find it sickening that his doctors are paying so little attention to what he says. I don't even like it when it happens to me with a much less serious condition, I can't even imagine the frustration I would feel were I seriously ill and my doctor treated me with that much contempt. Health care costs keep rising, doctors keep leaving the high litigation states, and the ones who are left don't listen to (or even seem to care about) their patients... This is a serious problem that needs a solution fast.
    • I've noticed that in the last few years (maybe it's just my perspective, I don't know) doctors seem less and less likely to actually listen to their patients.

      Find a good doctor and STICK WITH THEM! So many people bounce around from one doctor's practice to another and then (big surprise!) your new doctor doesn't know you, doesn't know your history and doesn't want to waste the time doing either (they know you'll be leaving them for another practice in a few months anyway).

      Patrick doesn't seem to have

    • Re:recent trend (Score:3, Insightful)

      by chud67 ( 690322 )
      I've noticed that in the last few years (maybe it's just my perspective, I don't know) doctors seem less and less likely to actually listen to their patients.

      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 m

    • Re:recent trend (Score:3, Insightful)

      by FurryFeet ( 562847 )
      I've noticed that in the last few years (maybe it's just my perspective, I don't know) computer support seem less and less likely to actually listen to their users. I have recurring popups in my PC that I get at least once a day and usually more. I have been going through this since the PC was new, when the techies refused to change the hard disk even though I wanted them to. Now I have too many files to make it a safe operation. Anyhow, I know what needs to be done and what I am suffering from, as I've bee

    • Re:recent trend (Score:3, Informative)

      by dasunt ( 249686 )

      I've noticed that in the last few years (maybe it's just my perspective, I don't know) doctors seem less and less likely to actually listen to their patients. I have recurring tonsilitis that I get at least once a year and usually more. I have been going through this since I was 6, when the doctors refused to take my tonsils out even though my mother wanted them to.

      So basically, you are trusting your mother's medical judgement over your doctor's medical judgement?

      IANAD, but googling, there seems to

  • What scares me.. (Score:3, Informative)

    by Chicane-UK ( 455253 ) <chicane-ukNO@SPAMntlworld.com> on Friday November 26, 2004 @10:59AM (#10924420) Homepage
    Is that because none of the doctors or hospitals are able to immediately diagnose these problems, they are just sending him away.

    Surely they should have him in until they get to the bottom of this! Our NHS may be in pretty rough shape but you if staggered into hospital with some of the symptoms he has been having, he'd be in a bed and getting looked at and wouldn't be allowed to leave until he was fixed up, or at least they had identified the problem and knew how dangerous it was and what they needed to do to fix it!

    Scary, really scary. Good luck Patrick.

    • Scary is right... (Score:2, Insightful)

      by Gothmolly ( 148874 )
      If this is the same NHS that wastes money on novacaine shots for people donating blood, who, after you donate, suggest that you go drink some caffeine, and if you have a non-life-threatening problem (ingrown toenail), you get bumped FOR YEARS waiting for surgery? I was there, I paid for it, I have the NHS card to prove it. And it sucks.

  • RTFM (Score:5, Insightful)

    by DarthBobo ( 152187 ) on Friday November 26, 2004 @11:00AM (#10924436)
    This fucking ridiculous.

    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.)

    • Sadly, I think you're right. It just doesn't seem possible that this many doctors could blow him off without introducing the possiblity of an expensive lawsuit. SOMEONE somewhere would have referred him to someplace where they do expensive tests with shiny machines.

      Right?
      • Well it seems the doctors are diagnosing him as having heart problems. They just don't agree with his observation that this is a new problem. I don't know what the right course of action is, in such a case - he suddenly felt pain, the doctors confirm it's a physiological cause, so he is not imagining things. Obviously he wants to feel better again. Asking around whether anyone can recommend a good doctor seems a reasonable thing to do.

        Anyway, best wishes to him, some 10 years ago I greatly benefited from

    • Actually if you had paid a little attention he said he went to the Mayo Clinic, which is a world renowned treatment center. It doesn't sound like he's sick enough to be admitted to a hospital. Maybe he has been offered hospitalization, but given that you didn't even notice he mentioned the Mayo perhaps you should defer judgement.

    • Re:RTFM (Score:4, Insightful)

      by the_rev_matt ( 239420 ) <slashbot AT revmatt DOT com> on Friday November 26, 2004 @11:40AM (#10924767) Homepage
      You're clearly not familiar with HMO's. The purpose of doctors in that context is to minimize the expense of caring for people, not to do everything reasonably possible to nurse them back to health.

      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.

  • The man is still working on updates??? (Score:5, Funny)

    by hellfire ( 86129 ) <deviladv.gmail@com> on Friday November 26, 2004 @11:10AM (#10924515) Homepage
    The guy has a nasty bacterial infection and is still trying to perform Slackware updates?

    I get the flu and I can barely stand to surf the web or chat on IRC! Hopefully, he will live into old age and share this story with his grandkids...

    "When I was your age, I was compiling code by hand, with a lung infection, uphill, in the snow! You linux programmers have it easy these days!"

    Good luck man, I'm pulling for you.
  • What he needs to do is find an infectious disease specialist at a GOOD teaching hospital such as John Hopkins in Baltimore, where some doctor will see the ability to get a good paper published out of his condition. Then he will probably get some serisouly good care because they want to see their name in print.

    He needs to let them know that no one can find what is wrong with him and list the which physicians he has seen.

    Finding a good doctor is hard. Find a good doctor that listens is even harder...

  • PubMed (Score:5, Interesting)

    by jarich ( 733129 ) on Friday November 26, 2004 @11:20AM (#10924590) Homepage Journal
    Use PubMed as your medical information source. It's where the scientists and docs publish their research and is considering a "real" datasource (as opposed to citing "the internet". Your doctors will know the name Pubmed when you mention it.

    http://www.ncbi.nlm.nih.gov/entrez/query.fcgi [nih.gov]

    My daughter has a heart condition and we found the doctors weren't interested in really discussing anything until we started using the "right" terminology. The terminology I picked up after reading a number of PubMed publications about my daugher's condition.

    I highly suggest that anyone researching any condition (but especially something exotic like Patrick) hit PubMed. Make it your source you cite when talking to your docs. Make it your primary source of information. All the other websites you read are just summing up the papers published here.

    • I'd look at PubMed for more ideas on what to try or for ideas to trigger a brainstorm but definately not somewhere to try to learn the critical facets of a condition. It might also be helpful if you read about a study in a major media source and want to see the story beneath the story. The bottom line is that PubMed has tons of studies about everything, but unlike the more 'dumbed down' ones, there's no "credibility" sorting system.

      A good study is double-blind controlled, with a sufficiently large yet con

  • Dude, stop changing doctors! (Score:5, Interesting)

    by the_skywise ( 189793 ) on Friday November 26, 2004 @11:25AM (#10924621)
    I've been in your situation before with a stomach problem. You're breaking the system!

    Doctor's diagnose by a flow chart the same way programmers debug a program. Given a symptom x and y, localize where the problem could be and its causes and try a solution. But unlike programmers, they don't try various solutions, rebuild and retest... Solutions in medical practice take time or can't happen at all at which point the problem has to be mediated to get on with the quality of life(ie hacked).

    The problem is that everytime you switch to a new doctor two things are happening. First, the new doctor is going to start from the top of the flowchart and work his way down to the first matching diagnosis and treat that. Even if you say that was checked and the problem is different, you're the pleeb, he's the doctor and unless he gets scientific proof otherwise, his opinion is the right one. Basically, unless you have every medical test result you have, on official paper, your opinion means squat. Secondly, you're retaining all this knowledge and experience so when you present your case to the new doctor you're coming off as: "I went to this doctor with chest pains, but he didn't see anything wrong and I have this other ache which I think is related, so I went to this other doctor who says the other ache is this unrelated problem, but meanwhile I've gained a third symptom of popping in my chest so I went to the emergency room but they didn't think anything of it, so I went to the internet and printed out these charts and I think I have a rare and exotic problem, what do you think?"
    Well the new Doctor is now going to think "hypochondriac" and not take your opinion very seriously becaue you've disregarded other medical opinions.

    Basically you've got to find ONE doctor that you trust, present your symptoms and then work with that doctor through the multitude of tests to come to a conclusion. A good doctor is a> smart, b> will listen to your case history and c> (and most importantly) will interact with you and answer your questions to alleviate your fears.

    Two anecdotes here: Both Michael Eisner and David Letterman had family histories of father's dying early from heart attacks. Both men's doctors ran the usual EKG's and stress tests and found no heart troubles. Both men continued to push for better testing and finally their doctors relented and did an dye test on the heart and found major clogging in the arteries with NO other symptoms present.

    On the flip side, a relative of mine had chest pains, stomach pains and pains on his upper left abdomen. After several heart tests, his doctor diagnosed acid-reflux and proscribed one of the common pills for it. After about a month, the pain was less but he still had it. So he went back to the same doctor who tested his heart again, no problem. But my uncle was sure that something else was up, so he went through a chest x-ray, clear. So then they ran some blood tests, clear. So then they ran a lower GI test by ramming a camera up his butt, clear. Gall bladder, clear. Finally, they dropped a camera down his stomach...and found something. Acid Reflux damage. My relative had stopped taking the medication because he thought it wasn't doing anything. So the doctor put him back on it and made him stay on it. Two months later, the pain had cleared.

    What you're feeling is real to you. I sympathize with what you're going through and urge you to keep up the fight. But you've got to work WITH the system.
    • ONE doctor that you trust,

      This is the key. As I said earlier, there's a huge disparity between talented and mediocre doctors, just as there is in programmers. And as others have pointed out, so many doctors these days just follow the flow chart without really caring or even listening. They hone in on the most likely cause without even considering other possibilities.

      Good doctors listen, they evaluate all the symptoms, they don't dismiss anything. Hell, a key part of my cancer diagnosis was a sympto

  • I was getting freaked out too...READ THIS (Score:3, Insightful)

    by MajorDick ( 735308 ) on Friday November 26, 2004 @11:31AM (#10924658)
    Seriously, I am on Cipro , second time for a bout of prostatitis myself, I waqs experiencing night sweats, heart pains and most disturbingly severe liver pain, after a ton of tests everything was Ok except I was still fevered and had the liver pain, all kinds of unexplainable and very serious seeming symptoms,

    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.
  • The bottom line for any illness is: your body need nutrients, not antibiotics. My advice for him is: Get yourself a Champion Juicer off eBay for $120. Then go buy: - 3 pounds of fresh ORGANIC ginger root - 20 pounds of this year's crop ORGANIC carrots - 2 pounds of ORGANIC beets (with the tops still on) - 10 pounds of ORGANIC Russet/Mac apples Use any of the above items (except ginger, see below) to make three 12 oz glasses of juice every day ... and drink them! Mix and match as you please. Make sure

  • Pretend they are technical support... (Score:5, Insightful)

    by stienman ( 51024 ) <adavis@@@ubasics...com> on Friday November 26, 2004 @11:56AM (#10924934) Homepage Journal
    My experience has been that with any profession if you, not part of that profession, claim to know better or push them to do what you believe needs to be done, they will be infinitely less useful than they would be otherwise.

    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

  • eat better as well; can only be good (Score:3, Interesting)

    by jago25_98 ( 566531 ) <<slashdot> <at> <phonic.pw>> on Friday November 26, 2004 @12:21PM (#10925153) Homepage Journal
    if it's viral go thrpough the steps to aid immunue system; can only be good to eat good food:

    -protein (i.e. whey) /aminos
    + others

  • The system sometimes fails (Score:5, Interesting)

    by murderlegendre ( 776042 ) on Friday November 26, 2004 @12:54PM (#10925467)

    Patrick's unfortunate plight is not all that surprising to me. I lived for 27 years with two undiagnosed major medical problems, despite scores of visits to doctors and ERs.

    Years of unexplained nausea & abdominal pain, weak immunity, mysterious pains that roamed randomly over my body, recurring flu-like symptoms, joint and muscle pain, headaches etc. I was called everything.. hypochondriac, liar, quitter, faker etc. So many specialists, tests, and so on, that I can't even count them all.

    Finally, on yet another desperate 3am ER visit, my then-wife demanded that they look until they find something to explain all of this. Some bright ER intern plops an ultrasound on my belly (no, none of the many other "medical professionals" had ever bothered to do this..). The discussion went like this:

    Intern: Do you have any history of kidney disease?

    Me: No..

    Intern: You do now!

    24 hours later, I was diagnosed with PROFOUNDLY ADVANCED Polycystic Kidney Disease. My kidneys were so enlarged that they were squashing all of my other organs out of place. This hadn't happend overnight; it was with me all of my life, slowly getting worse every year. Once they had the kidneys figured out, it wasn't long until they had the Fibromyalgic illness / chronic fatigue diagnosed as well. Needless to say, after 27 years of suffering, I was less than totally impressed with the medical profession.

    In short, the system sometimes fails.. and when it does, it can be a real doozy. Hang in there Pat, every illness has a cause, and yours will surely be found. Blessed be.

  • Where's the evidence? (Score:3, Informative)

    by ponos ( 122721 ) on Friday November 26, 2004 @05:51PM (#10927468)

    It's usually very hard to put a diagnosis without proper data. In this case, even though I'm currently preparing for USMLE-like examinations (you are presented with some data and you try to make a diagnosis), I find it very hard to trust Pat's "clues" because I don't know what is real and what is *his* idea of a diagnosis.

    As a doctor I really like to hear my patients tell me actual facts and not their interpretations. E.g. "I have fever and sore throat" and NOT "I have the flu". Infectious diseases that may present with fever and sore throat are many (ranging from primary HIV infection to infectious mononucleosis to common cold) and it's highly unlikely that the patient has considered all of them. By focusing on a possible "diagnosis" the patient may ignore other signs that would be useful to the doctor.

    I could list quite a few diagnoses that would fit Pat's description, but guessing is quite useless, especially in important health matters. Maybe some doctors did not follow proper standards of care but the fact that an assumed serious condition did not alarm so many of them is quite suspicious.

    As a simple advice (I hope Pat is reading this!): IF you have fever (defined typically as over 38.3 deg. Celsius) plus a NEW audible cardiac wheeze (not mitral prolapse, which is quite different) you should be admitted to the hospital on the basis of an assumed diagnosis of bacterial endocarditis (unless *proven* otherwise). Bacterial endocarditis usually develops on PRE-existing pathological conditions (e.g. old rheumatic fever, IV drug use). Typically, cardiac ultrasound (why don't you go have one, if you are so worried?) will give very useful clues. Examination of the retina and blood cultures (at least three) are also necessary. If no signs of bacterial infection are found, several viral pathogens can cause pericardial inflammation but I can only remember Coxsackie and echoviridae off the top of my head. Viruses usually cause milder disease.

    Finally, please do not trust the web, google, medline, nih. These are excellent data sources, but you are unable to properly interpret what you read without proper training. You can't just open "harrison's internal medicine" and hope to acquire the skills to make a diagnosis in a few hours/days/weeks. Find a good doctor and trust him. Sure, some people say that they correctly diagnosed their condition, even though the doctors where wrong. It happens, doctor's make mistakes. But on 99.99% of cases, your doctor knows better than you.

    P.

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