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Science Software Linux

Patrick Volkerding Battles Mystery Illness 675

sethadam1 writes "Calling all Slashdoctors! Pat Volkerding, maintainer of Slackware Linux, needs your help. This morning, he posted his very detailed account (mirror) of his battle with Actinomyces here on the Slackware FTP server. Patrick has given his blood, sweat, and tears to the open source community for years in Slackware, one of the oldest surviving Linux distributions. If you can, please help!"
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Patrick Volkerding Battles Mystery Illness

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  • by the_mad_poster ( 640772 ) * <shattoc@adelphia.com> on Tuesday November 16, 2004 @03:12PM (#10833556) Homepage Journal

    This man does not need his story posted on Slashdot, he needs emergency intervention from the specialist RIGHT NOW even if that means he gets screwed on some BS clause in his insurance contract. He's been running around with this infection for so long it's getting critical and he needs to skip out on all the nonsense and get help IMMEDIATELY. When you're talking about spreading infections the last thing you want to do is roll the dice by delaying treatment. Yea, it might slow enough for him to be okay, but it's an infection, so maybe not.

    Christ, if he's going to get screwed by some stupid HMO if he doesn't play their little game or something, I'll toss a couple bucks into a donation fund for the medical bills if someone sets one up.

  • by FooAtWFU ( 699187 ) on Tuesday November 16, 2004 @03:16PM (#10833605) Homepage
    How am I supposed to help?
    • Provide medical advice?
    • Drive him to the hospital?
    • Send money to pay for his treatment?
    • Develop a miracle drug to cure him?
    • Contribute time or money to Slackware Linux?
    With TFA slashdotted, I don't know exactly what he wants. How do I know if I can help?
  • by Anonymous Coward on Tuesday November 16, 2004 @03:17PM (#10833609)
    repeatedly defaced for the next few hours.
  • by Turn-X Alphonse ( 789240 ) on Tuesday November 16, 2004 @03:17PM (#10833614) Journal
    This is open source on the extreme level... who wants to sign up for open heart surgery open source?
  • by killjoe ( 766577 ) on Tuesday November 16, 2004 @03:19PM (#10833641)
    I figure "send money" is the all purpose help. I don't know anybody (other then Bill Gates) where send money won't work.
  • by Nurseman ( 161297 ) <nurseman AT gmail DOT com> on Tuesday November 16, 2004 @03:20PM (#10833648) Homepage Journal
    he needs emergency intervention from the specialist RIGHT NOW

    Ditto, get thee to an ID (Infectious Disease Fellow) Right now. I know many in the NY area, but if your dad "is in the medical community" find someone. This type of infection needs to be treated agressively.

  • by notthepainter ( 759494 ) <oblique&alum,mit,edu> on Tuesday November 16, 2004 @03:22PM (#10833678) Homepage
    From the article, it isn't clear if the infection is in his lungs or not. If it is, he is also likely not getting enough oxygen to the brain. I should know. I had a pulmonary embolism a few years back. I almost died. The day I was admitted to the hospital I emailed my wife telling her to come home and take me there, I didn't dial 911. Why? My brain was starting to shutdown. I realized this years later when reading "Into Thin Air." I was essentially above 28,000 on Everest without oxygen. I don't know Patrick, but I hope someone who does can convince him, on the phone, that he should not necessarily be making decisions right now, he may not be in the space to. It does sound like he needs to be admitted.

    I was lucky, I lived.

  • by handorf ( 29768 ) on Tuesday November 16, 2004 @03:23PM (#10833710)
    But self-medicating like he did with the Cipro is part of the problem with medical care in this country.

    If you have a multi-year problem, go do the doctor! Do what they tell you! DON'T think you know more than them. Doing research on your own is one thing (good-on-ya there) but antibiotics are not toys!

    Hope you get better, though. /waiting for the superbug
  • by Profane MuthaFucka ( 574406 ) <busheatskok@gmail.com> on Tuesday November 16, 2004 @03:26PM (#10833748) Homepage Journal
    Although he doesn't come out and say it, it appears that he was treating himself with antibiotics.

    This is astonishing, and I'd go as far to say this is stupid, and even immoral.

    Stupid, because you could create a drug resistant strain of whatever it is and kill yourself. Who know, he probably already has. Immoral, because that drug resistant strain of whatever is now a threat to everyone else if they catch it.

    Folks, don't be treating yourself with antibiotics. Unless you're a doctor, you don't know what you're doing.

  • by Marxist Hacker 42 ( 638312 ) * <seebert42@gmail.com> on Tuesday November 16, 2004 @03:30PM (#10833802) Homepage Journal
    And the worst of it is, it sounds to me exactly like when my step-grandfather had siliconitis- and ignored it for 50 years. Did so much damage to his lungs that he was on oxygen for the rest of his life. If I was this guy, I'd keep taking the amoxycillian until all the little beasties were dead, but I'd also INSIST upon living in an oxy-enriched atmosphere, perhaps even a bubble, for a while until the lungs healed.

    And damnit- eat something- 145 lbs and 6'2" is NOT a healthy weight when dealing with major lung damage.
  • Re:RTFA (Score:4, Insightful)

    by the_mad_poster ( 640772 ) * <shattoc@adelphia.com> on Tuesday November 16, 2004 @03:30PM (#10833808) Homepage Journal

    See that star next to my name idiot-boy? I already RTFA. He needs to go to the specialist right now not wait until Friday.

    Infections can and do spread through the body at an exponential rate once they break loose. This man CANNOT afford to wait until Friday, he needs to go the ID specialist IMMEDIATELY or he could well be dead or permanently injured before he has a chance Friday.

  • by nkh ( 750837 ) <exochicken@@@gmail...com> on Tuesday November 16, 2004 @03:31PM (#10833820) Journal
    I'm scared of the last part of the message:
    While almost everything looks normal there, the following white cell counts are (barely) out of the normal range:

    A friend who is studying medecine said to me once: Don't you EVER try to do or reaching any conclusion on your own if you have not studied for at least 5 years. I'd like to add: DON'T ASK /.! IT'S NOT FUNNY, ASK A F***ING SPECIALIST!
  • Cross the border (Score:3, Insightful)

    by djdos ( 521469 ) on Tuesday November 16, 2004 @03:32PM (#10833839)
    Apart from cold winters, Minnesota is known for the kick ass medical centers. Fargo isn't that far of a drive. I would suggest driving to minneapolis (U of M) or rochester (Mayo). There is probably someone that has spent half of their life studying this stuff around here. I know it's a shameless plug for MN, but we need something to brag about.
  • by GigsVT ( 208848 ) on Tuesday November 16, 2004 @03:35PM (#10833888) Journal
    Diagnosis is rarely suspected or made on clinical grounds. Usually, the clinical laboratory or the pathologist provides diagnosis.

    Patients present with nonspecific symptoms and findings, such as fever, weight loss, diarrhea or constipation, and abdominal pain. Extension to the perirectal space is not uncommon and these patients present with defecation complaints.


    So basically we have a disease that doctors can't even disgnose reliably most of the time, with very nonspecific symptoms ranging over a huge range.

    I hope he gets a good doctor that totally ignores his self-diagnosis. The ones he has dealt with in the past seemed way too likely to just give him what he wanted without making a real diagnosis.
  • by Skyshadow ( 508 ) * on Tuesday November 16, 2004 @03:40PM (#10833973) Homepage
    Something needs to happen -- apparently he's decided that he can somehow treat himself if only he can get his hands on enough antibiotics.

    We have doctors for a reason, and this is it! Go to the HOSPITAL or you're going to DIE. Insurance or not, it's not worth it to save yourself the cost of a freakin' ER admission!

  • by easter1916 ( 452058 ) on Tuesday November 16, 2004 @03:40PM (#10833978) Homepage
    Ah, what a fine opportunity this situation presents for you to indulge in polemic... asshole.
  • I know I could have said more politely, but if I get a drug resistant infection and die, will anyone be around to say "he could have been given a more polite infection?"

    When people do stupid things that affect nobody, I don't worry about it. When people do stupid things that can kill me, there is an upper bound to my politeness.

    I hope the guy gets better. And I also hope that his doctor gives him a three hour lecture and a tour of the drug-resistant infection ward of his hospital. Maybe he should stop by Jim Henson's grave to leave flowers.

  • by eln ( 21727 ) on Tuesday November 16, 2004 @03:48PM (#10834087)
    Superstitious or not, to a religious person, the knowledge that many people are "praying for them" can lead to a significant positive placebo effect.

    Even if Patrick is not religious, knowing that many people are keeping him in their thoughts may produce a similar effect.
  • by nojomofo ( 123944 ) on Tuesday November 16, 2004 @03:48PM (#10834096) Homepage

    The problem isn't only the self-medication. He went to a doctor. Things felt better for a while, before starting to feel worse. Rather than going back to the same doctor, he waited until it was horrible, and went to another ER. Lather, rinse, repeat. If he had gone to his regular doctor, and let the doctor know if/when the initial treatment failed, the doctor could have done more research and looked for less common problems. The point is that it's impossible for your doctor to know immediately what's wrong with you unless it happens to be something that's pretty common. By not giving anybody a chance to hunt down what this really was, he was getting a bunch of different people treating him for what the most likely problem was - but unfortunately for him, it doesn't appear that it was any of those likely things. So he was getting the same ineffective treatment time after time because none of the doctors treating him knew the whole history.

    He also doesn't seem to be treating things too rationally when he complains about not being able to be seen within 48 hours, and deciding that the best course of action would be to drive halfway across the country....

  • Re:Hey folks (Score:5, Insightful)

    by Minwee ( 522556 ) <dcr@neverwhen.org> on Tuesday November 16, 2004 @03:52PM (#10834138) Homepage
    Take care of yourself. Don't mess around with your health. Remember that you can't check out an older version of yourself from CVS if things go wrong.
  • Re:Proof (Score:3, Insightful)

    by epiphani ( 254981 ) <epiphani@ d a l . net> on Tuesday November 16, 2004 @03:53PM (#10834155)
    While I totally agree, and would definitely help out patrick if I could do anything to help, there are unfortunate conditions that I think apply to this. I might code a major GPL ircd, but chances are if I ever wanted this type of help, I probably wouldnt get a slashdot posting.

    Its unfortunate in a lot of ways, but slashdot cant be the "help me" spot on the internet for the open-source coders out there. If i submitted something like this for myself, chances are I'd get rejected because "who the hell is epiphani and why do i care".

  • by Greyjack ( 24290 ) on Tuesday November 16, 2004 @03:58PM (#10834233) Homepage
    From ScienceBlog [scienceblog.com] (and others, if you google for it):

    People who use their computers to find information about their chronic disease often wind up in worse condition than if they had listened to their doctor, according to a University College London review of studies on Internet health. Using interactive computer tools does improve the medical knowledge of people with diabetes, asthma or other chronic conditions, and does provide them with positive feelings of social support, according to researchers reviewing 28 randomized controlled trials involving 4,042 participants. But there was no evidence that cyber-medicine helps people change their behavior and startling evidence that it may leave them in worse health.
  • by jd ( 1658 ) <imipak.yahoo@com> on Tuesday November 16, 2004 @03:59PM (#10834243) Homepage Journal
    It's worth noting that the Wikkipedia entry pointed to in the article refers to the specific class of bacteria as being highly resistant to virtually all antibiotics. Only two are listed as effective, and then not always.

    If a computer virus kills a system, you can throw in the restore disk/tape and recover. If a physical bacteria or virus kills a person, there's not a damn thing anyone can do.

  • Re:Hey folks (Score:4, Insightful)

    by zx75 ( 304335 ) on Tuesday November 16, 2004 @03:59PM (#10834257) Homepage
    Just some friendly advice,
    You may be starting to feel better now, but don't sit around waiting for a 'next time'. Visit your doctor, tell them everything you can and make sure they listen. (Canadian here, occasionally when doctors are in a rush we get 'one foot out the door syndrome' where they are more focused on all the patients they have left to see today instead of the problem at hand.)

    Speaking from a point of view that I have had family members suffer very close calls... sometimes when 'next time' comes around, its already too late.
  • by rewt66 ( 738525 ) on Tuesday November 16, 2004 @04:01PM (#10834285)
    Wha????? I don't "keep a good thought" for people; I pray.

    And, yeah, I'm praying for Patrick...

  • by MooseByte ( 751829 ) on Tuesday November 16, 2004 @04:07PM (#10834359)

    "So he was getting the same ineffective treatment time after time because none of the doctors treating him knew the whole history."

    Damn straight! When dealing with a chronic illness it's vital to have a running history with a doctor (or at the very least doctors at the same office).

    Otherwise you'll never likely get past the first "menu option" in the support call, so to speak. Everyone's going to have you reboot your system and check your firewall settings when what you've really got is a buggy vid card driver.

  • by Skye16 ( 685048 ) on Tuesday November 16, 2004 @04:11PM (#10834419)
    Did you even RTFA? He's been to the ER multiple times; no one is really taking into account the gravity of this issue every time he goes. The ER is a hectic place and it's pretty obvious this isn't a run-of-the-mill illness; continuing to go back is NOT going to suddenly make them wake up and do the research to figure out what this shit is.
  • Re:Strange story (Score:5, Insightful)

    by Hawkeye477 ( 163893 ) on Tuesday November 16, 2004 @04:16PM (#10834497) Homepage
    Not to be rude but in your last sentence you completely summed up the problems I have had with doctors and what is wrong with doctors, which is "They are just as egotystical as programmers". I'll never understand how doctors think they actually understand the human body, they always think they are right... it drives me nuts. If I say it hurts .. it really hurst! it's not mental!

    A perfect examples of my last run in with dr is... I'm 25 years old with the problems of a 50 year old and everytime a new one hits me the doctors take forever to believe me and then I usually end up having to figure out what I have and force it down there throats until they come to the same conclusion themselves ... The latest one in my shitty annoying illnesesses is a herniated Disk in my back between L1-L2 ... Since the pain was in my back and front, the doctors (not just one, but many) all assumed I had intestinal problems, or kidney problems ... no one wanted to listen to me that it hurt more depending on the way I moved until they stuck enough poles up my ass and could not find a thing and did an MRI on my Lumbar spine. This took (9 months!)

    One bit of advice for Doctors (and Programmers). STOP BEING SO DAMN EGOTYSTICAL! computers and the human body are very very complicated machines, u ain't always gonna be right and shoudl look at all the syptoms of the problem and LISTEN to the patients (or users)...

    SO that is my little rant as I sit here high on pain killers trying ot make the pain go away from my screwed up disc ...
  • by Jason Earl ( 1894 ) on Tuesday November 16, 2004 @04:20PM (#10834547) Homepage Journal

    Good hell. You should try reading the article before you post. Patrick did go to the doctor. In fact, he went to lots of doctors, and they all did precisely the same (wrong) thing. Patrick's research (and Google) was what finally provided the clues that lead to proper diagnosis.

    You should definitely consult a doctor, but anyone with a serious medical issue that doesn't take the time to do some personal research is a fool. Doctors have a lot to do, and they don't get paid for research. The average individual with an Internet connection has access to more medical information than even the most well-connected doctors did 10 years ago. In this case there was almost no chance that the average local doctor would have any experience with this sort of infection. Heck, most of the information available on the Net is about postmortem cases where the patient died because the doctor misdiagnosed the illness.

  • by gregm ( 61553 ) on Tuesday November 16, 2004 @04:25PM (#10834614)
    Bah! bullshit... tell all this to my friend Robert... oh wait, you can't, he's fucking dead. He had no insurance and literaly had a tumor the size of a fucking softball on his pancreas. The first two "doctors" gave him some bs and sent him on is way. Only after we got him on Medicaid did anyone bother to give him the time of day. His symptoms were classic, big bulge sticking out of his side, bleeding gums etc. and yet he was absurdly mis-diagnosed twice.

    As far as google knowing more than a doctor... WTF can't a doctor with all that education and information google for themselves? Aparently not or they aren't willing to take time out of their golf schedule to do so.

    I've had a pain in my upper right abdomin for a few years now... they did tests upon tests performed surgery and removed my gall bllader and yet I still have the freakin pain. I even asked the surgeon to look around at that area while he was removing my gall bladder because I know it's way higher than my gall bladder and after surgery when I asked him if he saw anything he gave me a blank look and didn't even remember our earlier conversation. So now I can't drink milk unless I take Nexium daily and I still have that pain in my upper stomach, thanks so much doctors.

    One of their theories was I had some disease where the iron build up in your bloodstream and were getting ready to start the bloodletting when someone realized that the amount of iron reported on my blood test was impossibly high... so did they do another test?? hell no, since the iron levels were too high to be possible then it must be impossible for them to be reasonably high. Of couse I researched that disease (I can't remember the name) and the symptoms didn't match up to mine in the least anyway.

    The problem with antibiotics is mis-use... First off don't take anyhting until you absolutly have to and then make damn sure you take enough to kill every last germ before stopping.

    I hope it's just like this at the doctors we've gone to in central Indiana and the rest of the country actually has well-meaning and inteligent doctors.

    So Patrick you do whatever it takes to get this figured out and anyone who is telling you how stupid you are for self-anything to go to hell. Don't be afraid to make a scene at the Doctors's office to get them to take you seriously, if you don't they could just let you die.
  • by Isldeur ( 125133 ) on Tuesday November 16, 2004 @04:26PM (#10834629)
    Did you even RTFA?

    Not all of it, no. But it doesn't matter. If the ER he's gone to doesn't admit him and he thinks they're wrong, he needs to go to the ER of a hospital where they're not going to brush him off if he's not a run-of-the-mill disease. And if a place like that doesn't exist in Podunk North Dakota, he needs to go to a real hospital.

    I don't know any doctors who would implicitly trust someone's internet self-diagnosis.

    Surely someone from the hordes of Ximian or other people in Boston can spot him a bed so he can go to Mass General [harvard.edu] or something similar in New York.

    Prescribing any medication for someone over the phone - especially for an infection refractory to initial medical care is wrong and will do more to hurt Patrick than help him. Believe me. There are proper protocols for this and they work well. Get him to a hospital where weird stuff is regularly seen (any large medical center) and get him into the ER.

  • by johansalk ( 818687 ) on Tuesday November 16, 2004 @04:43PM (#10834882)
    From another doctor:

    I was horrified to read that in the past he self-medicated with a 60 day course of antibiotics that he acquired through a guy his parents knew. Just the recipe for growing a superbug!

    I was further horrified to read that now he only wants people to call him if they can get him high-dose antibiotics. He simply needs to see a specialist for specific, directed therapy it may well involve antibiotics, but it will be a precise type of antibiotic, arrived at by expert knowledge and a culture of the organism they would get from his sputum.

    I doubt that he would've gotten an infection from the use of an electric toothbrush. I personally think the clue, if it's a chronic respiratory infection indeed, would his "annual camping trip".

    To American slashdotters : this is what you get when you have 45 million uninsured Americans, and yet your nation votes against a candidate that promised universal health coverage in favor of another who chose to limit stem-cell research on religious grounds.

  • by Anonymous Coward on Tuesday November 16, 2004 @04:56PM (#10835088)
    Well, yes... but within reason.

    Remember, 90% of everything is crap. That is especially true of the Internet, where anyone can post information as if it is true. Think of how many times you have gone to a website about something in your area of knowledge, and found it to be misleading or downright false.

    Doctors, even long before the internet, have to deal with lots of people who like to self-diagnose, self-medicate, and generally make it hard to do real medicine. Penicillin is almost useless now because people used it improperly (e.g. for the flu, for too short a duration). There are also a lot of hypochondriacs who think they have fatal diseases for every sneeze (especially mothers with their kids). Doctors have a lot of training and experience to know what is likely and how best to deal with it, and having patients tell them what to do doesn't help. Again, think of all the times someone asked you about their computer and didn't listen to your reasonable response. Usually they just want you to agree with their uneducated diagnosis.

    That said, there are a lot of uncommon illnesses out there, things that a doctor may see once in their lifetime, if that. If they studied well, they might recognize it. If they really take an interest, they might be able to look it up. If it resembles something common, though, it is likely to be missed. You are the only one really committed to keeping yourself healthy, so you are probably the only one who is really going to research a possible rare illness.

    Where does that leave you? I don't know. It is safer to waste your time and annoy your doctor than to ignore what might be a serious condition. But, your rate of return will be low and you just make your doctor more disgruntled (I can't hardly get mine to speak to me) and drive up the cost of healthcare.

    My solution is to have several doctors in the family, so that I can talk to them off the clock and actually get them to pay attention to me, but I'm lucky that way.
  • by the-build-chicken ( 644253 ) on Tuesday November 16, 2004 @05:12PM (#10835324)
    ...I'm an australian who lived in the states for a while...while our health system is far from the best in the world (long queues for public hospital), you can generally go to a GP for free, and, if your symptoms are life threatening, you'll generally get straight into a public hospital...which brings me to my observations of the two systems...

    HMOs don't work!

    How can't you put a company, whose bottom line is profit and cost reduction, in charge of peoples health...it does not work...every day you hear more stories about it not working.


    any one of you could be in a similar situation...and then it will be too late...make some noise that you want the system changed...get your friends to make noise...hell, do something radical...but don't allow health care to become a right of the wealthy...because guess what, if you get sick, you won't be able to work...and you won't be too wealthy then...and you'll have to do whatever the HMOs tell you to because you won't be able to take care of things yourself.

    HMOs have it in the bag, because the only time you'll dispute their position, is when you have no bargaining power...you don't like their decision..they can quite happily say "ok, well, how about you die then"...I'm pretty sure your bargaining power is screwed at that point...for god sake Americans...dispute it now, while you're still in a state too.

    Health is a right, not a comodity. This will not get better by itself...and for those about to argue that free market forces will sort it all out...it's suprising how little shopping around one does when they're hooked up to a life support machine.

    So for god sake...MAKE SOME NOISE...CHANGE THE SYSTEM...before you don't have a chance to.

  • by ajs ( 35943 ) <ajs@nOspam.ajs.com> on Tuesday November 16, 2004 @05:15PM (#10835383) Homepage Journal
    It is important to note for all of the "don't go to Slashdot for medical advice" shouters, that Patrick HAS gone down the medical community route. He's asking for additional input and anyone who can help his doctor grease the treatment skids. This is a *good thing*, and it's just too bad that everyone doesn't have access to the Slashdot pulpit for such dire needs (e.g. when a friend of mine almost lost a leg over a mystery infection).
  • RTFA please !!! (Score:5, Insightful)

    by ArcticCelt ( 660351 ) on Tuesday November 16, 2004 @05:34PM (#10835652)

    The guy DID went to see many doctors many times and he is not doing this to play doctor. Because previous doctors weren't able to put the finger on what he have so he decided to write an account of his symptoms on the web and then, if someone can point to what he have he will go to see a specialist about that. He is also suspicious about a condition called "Actinomycosis" and because it's a rare infection he want to reach as many specialists to help him take a decisions on what doctor he should go to see. Going to the ER will do nothing for him, he already did it many times so people, please RTFA and stop commenting stupid stuff.

  • by Anonymous Coward on Tuesday November 16, 2004 @05:34PM (#10835655)
    The usual problem with antibiotics is going off them too fast, leaving the 1% that's most resistant behind to repopulate.

    The other similar problem is using too low a dose, which has similar effects.

    Neither of these obviously applied in this case. It was a generic dose of a generic antibiotic, which may not be sufficiently effective for the pathogen in question, but it's not going to cause a big disaster. Certainly not compared to the initial dose.

    In general, yes, I do agree that things like codeine that can only hurt the taker need to be a lot less regulated, and antibiotics that can cause public health issues that hurt others need to be a lot more regulated.
  • Oxygen (Score:3, Insightful)

    by gr8_phk ( 621180 ) on Tuesday November 16, 2004 @05:35PM (#10835661)
    IANAD (I am not a doctor) he should see one.

    While I can appreciate the problem he's having, I also see several signs of something else... Panic Attacks. I have relatives who've gone to ER over them and I've had some symptoms myself at stressful times. Until you experience it, it's hard to understand/believe. To me (and I am not a doctor) this guy seems to need a small dose of valium followed by continued treatment for the infection - or whatever his doctors agree it is.

    BTW, Xanax can also help take the edge off anxiety, but I've seen what appear to be withdrawl symptoms last for months or years after it is stopped (not abruptly either).

    This is just my opinion, don't listen to me.

  • Same here (Score:3, Insightful)

    by Featureless ( 599963 ) on Tuesday November 16, 2004 @05:41PM (#10835739) Journal
    First distro was slackware, way the heck back when.

    Not a religious man, but I hope he's OK, and I'm glad the community is involved and maybe can help.

    No expert myself, but it sounds like he needs to drive up to Mayo, kick over the triage desk, and refuse to leave until they cut the red tape for him. His descriptions of his problems make me think nobody should be making this guy wait "till Friday" for anything.
  • Important Advice (Score:5, Insightful)

    by Featureless ( 599963 ) on Tuesday November 16, 2004 @05:49PM (#10835838) Journal
    I'm going to relay some advice from an MD friend of mine. Scream your head off.

    Your symptoms sound gravely serious, and if anyone is telling you to wait "until Friday" don't take that for an answer.

    One thing I had a hard time understanding until I ran into it is the triage system at major medical centers. If you are walking and talking, you are not an emergency, and that is often not cool. When you have unusual amount of self-composure or stoicism it can literally kill you. I've been through this myself, I know what I'm talking about.

    If I were you I would get in a car and head straight to Mayo and not stop making a scene until I got the full and undivided attention of an expert. And by that I mean someone who can get you your antibiotics in 5 minutes with a phone call. Don't worry about being a GOMER. It's your life, man.
  • by Anonymous Coward on Tuesday November 16, 2004 @06:35PM (#10836364)
    I had Guillain Barre' syndrome. I had pain in the lower back and tingling, weakness, and increased numbness in all extremities.

    The "doctor" (an MD) was convinced I had a kidney stone, though nothing except my gender and age would indicate that.

    As my pain increased and paralysis increased, the "doctor" scheduled me for a gastrointestinal ultrasound. The day of the ultrasound I was basically paralyzed, yet the "doctor" would not accept my urgent, emergency phone calls asking her to see me or to get me some neurological testing.

    I finally got another doctor to refer me to a neurologist who diagnosed me in fifteen minutes and had me immediately checked into intensive care. I spent a week in intensive care, completely paralyzed and iv'd down $50,000 in gamma globulin.

    So respectfully, doc,

  • Re:Strange story (Score:5, Insightful)

    by harvardian ( 140312 ) on Tuesday November 16, 2004 @06:51PM (#10836520)
    I agree with other responses to this post. You sound all too like many doctors I've come across. Rather than listen sympathetically and try to find an honest answer, you jump to the conclusion that the patient's problem is in his/her head.

    I've personally never had a serious disagreement with a physician, but my girlfriend spent the last three years (!) getting a proper diagnosis. The first two doctors told her that everything was in her head and didn't do any serious testing. Crying and frustrated by the opinions of doctors like yourself, she decided they were right and decided to "deal" with the problem herself.

    A year later, the problem continued unabated, and she decided (at my pushing) to see another doctor, despite how scared she was to be told that she was a mental case again.

    To make a long story short, they found that her amenorrhea (she doesn't have her period) and extreme hunger weren't caused by a mental illness or an eating disorder as previously believed (we both knew neither was possible), but she rather has polycystic ovaries, insulin intolerance, and extremely low leptin levels (as well as having the strange female hormone levels that go along with all that). She even took part in a clinical trial for active women with problems like these where she took leptin, and it was like night and day (FYI, she's not overweight but rather very active...apparently both can cause similar problems, but I don't know much about it). So it's pretty clear that none of this was in her head.

    And my father was a doctor, FYI, so it's not like I have a problem with them. He agreed with me (before he passed away) that doctors are all too often dismissive of people's problems.

    Also, in regard to "If Volkerding is expectorating, stuff can be cultured" -- if you took him at his word (which I've noted is difficult for you to do), then you'd know that he has retrieved what he thinks is a sulfur nugget from his throat, and he'll probably get it analyzed when he sees the specialist. I don't know why you even mention culturing, he never said what he retrieved from his throat was organic.
  • by Anonymous Coward on Tuesday November 16, 2004 @06:51PM (#10836522)
    I commend Patrick for being proactive and trying to self diagnose. Often, it is the determination of the patient that can make the difference in finding out what is wrong.

    Two years ago, I self diagnosed a rare skin disease (27 out of 1 million) that my personal physician told me was a bruise. After 4 weeks it did not go away and she said not to worry that it will heal and that it was simply a deep bruise. Well, I did worry. Maybe it was skin cancer or something?! I didn't trust her. So I googled for a few hours and found a hit using "Cliff Drop Borders." [google.com] My skin patch had this feature and when I googled it, low and behold there was my exact skin patch! It is called Atrophoderma of Passini and Pierini, a form of Morphea. I must say that was a very rewarding experience and I felt so empowered by the internet. This would not have been possible just 20 years ago!

    When I returned to the doctor with print outs in hand, all the doctors came in to ask me questions, like they had never seen this case before and were genuinely curious to learn about it, like a was a Martian or something. In fact, they broke out their medical books and verified my findings and agreed with my diagnosis.

    As a follow up, I went to see a skin specialist (Harvard Graduate) and while he was impressed that I diagnosed my condition, he scolded me for not demanding to see a specialist sooner. Your normal doctor will probably never be able to diagnose a rare disease. Fortunately, the disease has the same morbidity as the normal population, and often disappears on its own for reasons unknown.

    Best of luck to Patrick, keep trying the doctors but there is nothing wrong with working in parallel on your own.
  • by bigberk ( 547360 ) <bigberk@users.pc9.org> on Tuesday November 16, 2004 @07:52PM (#10837119)
    I didn't say it, because I didn't do it. All of the antibiotics I've had were prescribed by qualified physicians who had seen me personally.
    Pat, sounds like you have been doing the right things. You have seeked the help of professionals. Keep that up and be very persistent. In the mean time, please get lots of sleep and maintain your intake of fluids, vitamins, and other nutritious foods. This is essential for keeping up your immune system (especially the sleep). Doctors can medicate you, but do what you can to keep your body as strong as possible under the circumstances.
  • Re:Strange story (Score:2, Insightful)

    by Anonymous Coward on Tuesday November 16, 2004 @08:07PM (#10837269)
    Sounds very much like my issues getting my gyn disorder (endometriosis) diagnosed. It wasn't until a peach sized cyst formed on my right ovary and I went in thinking the pain was the appendix that it was finally caught... after years of pain and trouble eating. Turns out the eating problems were because all the food I ate back then are suspected to make the pain of this disorder worse. Things got much better once I had surgery to drain the cyst/dried blood and laser out the endo lessions. Then I changed my diet to avoid most problem foods and things got even better, except a little bit of pain from scarring at the incision site.

    Women with reproductive disorders seem to have a disproportionate amount of trouble getting proper diagnosis early on. Most women with endometriosis go through years of being told "it's all in your head" only to find out the problem when they're attempting to have a baby but can't because the scarring from the lessions has rendered them infertile. I'm sure similar happens with other reproductive disorders have hit similar brick walls and they don't find out the cause until years later. I think the reason it's mostly diagnosed during infertility treatment is because that's usually paid for by the patients, not the insurance, so there's no "cost cutting" pressures on the diagnostics.

    Even with my confirmed endometriosis, getting basic treatment on my current health plan is a PITA. Best I can get out of them is birth control (keeps things in check) and perhaps an occasional ultrasound if the knife through the abdomen pain comes back. Forget about another surgery unless the ultrasound shows something. Forget about even seeing an ob/gyn annually or during a pain attack, they'd rather you see the gyn nurse or primary care doctor. For people with more than the average cold, trying to get good health care is a mix of bad doctors and good doctors constrained by bad health plans (or just outright dropped, as happened with my last good gyn).
  • by Anonymous Coward on Tuesday November 16, 2004 @08:15PM (#10837333)
    I'm fine with taking you at your word, but your narrative does make it sound that way.

    Ex: By mid October of 2001, I was in bad shape again. My parents asked me what I wanted for my birthday and I told them some more Cipro. They found someone who was able to help me out with a 60 day supply

    Please, do what needs to be done to get yourself better. Go see a specialist at a teaching hospital.

  • Re:Mayo Clinic (Score:2, Insightful)

    by mrfibbi ( 695943 ) on Tuesday November 16, 2004 @08:56PM (#10837746)
    My dad is an anesthesiologist in the bay area, and I when I asked him, he immediately recommended the mayo clinic, saying it's one of the best for infectious diseases in the country. I'd go there if you can.
  • by jd ( 1658 ) <imipak.yahoo@com> on Tuesday November 16, 2004 @09:01PM (#10837802) Homepage Journal
    Err, I do know what I'm talking about. Yes, junior doctors put in punishing hours. (In England, it wasn't that long ago that 96 hour shifts were considered normal!)

    However, senior doctors rarely put in that kind of time, and had zero reluctance to putting the junior doctors through that kind of stress. It became a sort of initiation rite. The health of the patients is not a factor, or they'd hire more junior doctors. There's no shortage of people who are interested. Supply vastly exceeds demand.

    You say you care about patients, but can that be entirely true? You know yourself that you cannot function intelligently when deprived of sleep to that degree, and that endangers patients. It is true that that is the way the system is, but to what extent have you put pressure on your superiors to change it?

    you say you're not into money, and that's probably true. Most junior doctors start off with strong feelings of wanting to help society. But they rarely stay feeling that way. Burned out on caffeine, stress and senseless deaths, most doctors soon develop a more callous outlook.

    Will you be getting insurance against being sued for negligence? Probably. Why? Is it so hard to make sure you only do irreversible work when able to do so? Actually, yes. American society is driven by the clock, not by the quality. If you want quality, you work in a co-operative, where you've a pool of medical staff and the best one to fit the job does the job.

    Such an "open source" approach to medicine doesn't exist in America. Co-operatives, of any kind, are thin on the ground in America. Sure, you could try forming one, but will you? Would you be willing to collectively pool your income and take a fixed fraction out, no matter how busy or idle you were?

    If you bring "open source" to medicine, I would be willing to go to your collective for treatment. But would anyone else? Is the concept too alien to Americans, too "communal/communist" for the good ol' US?

    Are you the equal of Mrs. Seacole? (Perhaps less well-known than Florence Nightingale, but probably far more important when it comes to the application of medicine to those in need, with little chance of any reward.) If so, maybe - just maybe - you're one of the good guys.

  • by anoopsinha ( 685380 ) on Tuesday November 16, 2004 @09:08PM (#10837857)
    There is a bit of irony here... if Patrick had presented with these complaints in India (less of diagnostic facilities are available here, compared to Europe or USA), he might have been diagnosed earlier... this condition is rather more common here... and doctors maintain a higher degree of suspicion.

    By the way, I am a doctor and an infectious disease specialist.

  • by RedBear ( 207369 ) <redbear@redCOMMAbearnet.com minus punct> on Tuesday November 16, 2004 @09:22PM (#10837950) Homepage
    He's feeling better at this point, what exactly is the ER going to do for him?

    ER tech: "Hello, what's your emergency?"
    Pat: "Well, I've been feeling kind of icky the last few years, with some pain here and there..."
    ER tech: "Uhhh... take two of these and call me in the morning. And stay out of the way, we've got people with real problems to treat."

    Didn't (R)ead (T)he (F)riendly (A)rticle, did you? He's been to the ER of several different hospitals maybe a dozen times or more in the last couple of years. ERs are for compound fractures, bullet wounds, heart attacks or multiple lacerations. Overt, obvious stuff. If they can't find anything "wrong", they give you some antibiotics and/or pain medication and tell you to go home and sleep it off. That's what they're there for, to deal with general emergencies.

    I doubt even the ERs at the largest hospitals will have people knowledgeable enough to diagnose something like this properly and send him to the specialist he needs to see. I would hope they do, but I'm a realist so I doubt it. Can they pull a piece of my windshield out of my left ventricle and patch the hole? There's a good possibility. Can they treat this disease? So far, the ERs and doctors at several hospitals have failed to even identify it. Scary, but typical. I'm not knocking ERs in general. What they do, they do well, and 99 out of 100 ER patients will thank them for that.

    Pat needs a specialist that knows about this specific disease, or better yet knows how to quickly figure out which specific disease he has, because right now it sounds like he and his doctor are still just guessing based on symptoms. They haven't run the types of tests that can tell you exactly what you're dealing with. They could still be treating for the wrong bacterium or doing something else that could make his time run out, literally.

    What the /. community needs to be doing is exactly this: identify the best and closest specialists in this medical area who have the best chance of identifying this disease quickly and correctly, and help Pat figure out how to get through the usual barriers that typically keep you from seeing the right specialist the first, second, third and twenty-third times you go to the ER with something weird like this. If I read his missive correctly, this is pretty much what he's asking for, a specialist who can give him the proper intensive treatment. Right now he thinks he knows what that entails, which is massive injections of penicillin, but I'm sure if he got to a real specialist and the specialist said something different, he would listen.

    Just going to the ER, that's not going to help. He's not actually dying right now, he's feeling better (he says). Until he does actually have an attack of some sort the ER people will have no clue what to do. Help him figure out how to get past the ER and who to connect with--as quickly as possible--to get this thing cured, whatever it is. As others have said, Friday could easily be too late. Knock on wood.

  • by RedBear ( 207369 ) <redbear@redCOMMAbearnet.com minus punct> on Tuesday November 16, 2004 @09:43PM (#10838114) Homepage
    Have you A) called the phone number(s) listed in the letter, or B) emailed this information including your cousin's contact info to the email address he listed in the letter, with "[HELP]" as part of the subject line, as he specified?

    If not, please think about doing so.

  • by thedarb ( 181754 ) on Wednesday November 17, 2004 @02:16AM (#10839781) Homepage
    I'm not a doctor and I don't know anyone who could help. What I can do is add you to my prayers and to our prayer chain. We'll pray for your health, your recovery, your comfort, and for your many doctors wisdom, guidance, and team work. I owe the career I have today to your production of Slackware, started learning it back at kernel 0.99pl13.

    Something you've not mentioned, is the health care costs. You did state you aren't looking for donations, but let me say this... If you end up using up your insurance or don't have any, tell us. We can not only find people who can help with your condition, but we can also find people (like myself) who are willing to help finance your recovery. Just say the word and let the fund raising begin.

    God bless, Pat. :)

    *Brandon Darbro

"The following is not for the weak of heart or Fundamentalists." -- Dave Barry