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Patrick Volkerding Battles Mystery Illness 675

Posted by michael
from the two-aspirin-and-call-in-the-morning dept.
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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  • "Last Post" (Score:5, Funny)

    by Anonymous Coward on Tuesday November 16, 2004 @03:11PM (#10833548)
    At least he has a sense of humor.
    • by sjf (3790) on Tuesday November 16, 2004 @06:49PM (#10836504)
      All these geeks trying their hand at medical diagnosis.

      Here's why computer programmers shouldn't be physicians:
      "OK, we're going to shut the patient down and bring up his systems one by one."

      -S
  • 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 Nurseman (161297) <nurseman.gmail@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 spineboy (22918) on Tuesday November 16, 2004 @03:47PM (#10834081) Journal
        The best place in the world to go if you have a weird problem is a universityhospital for a medical school. There you will find all sorts of specialists, who colect al the "zebra" cases from the surrounding 200 miles and treat them, 'cause no one else knows how to. Almost every medical school I know will take any pt, reguadless of insurance, on an emergency basis, and run the appropriate tests.

        I am a surgeon, and I don't like the sound of his lung/chest complaints at all. The address for the school is..UND School of Medicine & Health Sciences, 501 N. Columbia Rd, Grand Forks, ND 58203
        Phone:(701)777-5046

        I wouldn't waste time with community doctors, they probably are in WAY over there heads, or might not even recognize the seriousness of the situaton.
    • by notthepainter (759494) <oblique@EEEalum. ... inus threevowels> 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 Delita (300714) on Tuesday November 16, 2004 @03:29PM (#10833789)
        Something similar happened to me when I had an asthma attack in the middle of a case of pneumonia. I ended up sending my brother some IMs via AIM telling him to get help for me. Even if I were coherent enough to talk on the phone, my lungs were at less than 10% of normal capacity, and I couldn't make any sounds anyway. It's a strange feeling to know that something from AOL actually saved my life.
      • Oxygen (Score:3, Insightful)

        by gr8_phk (621180)
        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 e

    • by Mysticalfruit (533341) on Tuesday November 16, 2004 @03:31PM (#10833818) Journal
      One of my old bosses had something like what he has. He ended up having this thing hooked to his waist belt that pumped him full of a antibiotics for months on end.

      My boss did get better, it just took him a long time. Patrick should be ready for a very long recovery time with some nasty side effects along the way.

      Though I'd take shitty side effects to worm food anyday...
      • by sunwukong (412560) on Tuesday November 16, 2004 @03:40PM (#10833976)
        Looking at PubMed [nih.gov] for "Actinomycosis" brings up a couple hundred papers on this beastie.

        A good portion of these are "post-", i.e., this looks like its easily misdiagnosed/missed.

        The common treatment seems to be: 6-12 months of high levels of penicillin/amoxicillin/ceftriaxone plus surgery to get rid of pseudo-tumour growths.
    • by nkh (750837) <exochicken@gmai[ ]om ['l.c' in gap]> 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!
      • 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).
    • by AnonymousCohort (305978) on Tuesday November 16, 2004 @03:38PM (#10833929)
      From a doctor:

      Thats absolutely correct. He may be a brilliant computer programer but he should not try to be his own physician. By his own admission he has already significantly delayed his care trying to treat himself.

      The signs and symptoms he describes are consistant with pulmonary actinomycosis but there are also a number of other infections and other conditions that could cause this.

      While his own description of 'yellow nodules' is interesting and possibly significant no one has examined any of these nodules and no one has definitively diagnosed him yet.

      There is a good reason his doctor is required to consult an ID specialist before hospitalizing him.

      He should follow this advice, contact the best physicians he knows, and let them decide what he has and how it should be treated.

      If he does turn out to have actinomycosis his prognosis is very good for a complete cure and good recovery. I wish him the best.

      • 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 dcarey (321183)
      I am curious about his "sulfur granuals" ... reason being that I have had something similar for about 10 years (but I've never had his other symptoms). What I thought they were called were "tonsil stones." [doctorhoffman.com] That's a random link, but you can just google it and find much more. My tonsil stones look similar to what he has described - white yellowish, less than 1mm, sperical, foul smelling. But I don't have any other symptoms.
      • by macrom (537566) <macrom75@hotmail.com> on Tuesday November 16, 2004 @04:29PM (#10834674) Homepage
        I was thinking the same thing. My tonsils were removed in February of 2002, and one of the driving reasons was excessive tonsil stones. I had to use a Water Pik on a regular basis to keep the crypts cleared out. Eventually they just permanently swelled virtually shut, so my ENT agreeded to remove them.

        I am definitely not a doctor, but the symptoms he describes sounds familiar. The tonsilloliths are easily rectified, and I don't know of any other medical condition that would mimick this. The chest pains sound like pleruisy to me. I had this once in college -- freaked the living daylights out of me. My roommates took me to the ER where I was on oxygen and an EKG machine for a while. The doctor said that the symptoms are similar to a heart attack from the perspective of an untrained patient. Since the infection of the pleura is viral, there's really nothing that they can do other than prescribe pain killers and a heating pad.

        The big thing that he needs to stop doing is suggesting to doctors what he has. Walking into the ER and telling them that you think you are suffering from an infection acquired from "lung plaque", while potentially correct, will just brand you a loon. Anytime I go to the doctor I do research into my symptoms, but I always tell the truth and let the expert decide. While you may have symptoms for months or years, you are still far from knowledgeable about medical conditions. There is a reason that doctors are in their 30s before they're allowed to practice medicine on the unsuspecting population.
    • by Abm0raz (668337) on Tuesday November 16, 2004 @04:45PM (#10834901) Journal
      Agreed.

      5 years ago, I had the same infection, but of the mouth variety. It was misdiagnosed 3 seperate times; first as strep throat, then as mono, then as a "mono-like virus that will need to run it's course."

      By the third visit (8 days after the first) I was running a 103 degree fever, hadn't eaten in 3 days. The swelling in my troat and mouth was so bad I couldn't even swallow water (it came out my nose) and breathing was beginning to be affected. My roommate (and fraternity brother and hockey defense partner) made a HUGE deal at the hospital when they told me to go home and get plenty of rest. I was too delerious to do anything myself. Eventually, they called a specialist that agreed to see me in his office immediately (even though it was 7:30pm on a Friday).
      Soon as we got there, he had me diagnosed from thhe sound of my voice: Peritonsilus Abcess. He prepped me immediately for emergency surgery. Most painful thing I ever went through. I'll not bore with the details, but he drained a LOT of puss, granuals, and blood from my mouth.
      45min later, I could talk and swallow (still somewhaat painfully). He gave me a perscription for Biaxin and Clindamyacin because he said the bacteria that cause this are one of 2 major types and each is unaffected by the other's medicine. Within 36hr I was almost back to normal. Withing 5 days everything had healed.

      I can't imagine it in my lungs, though.

      -Ab
  • 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 HotNeedleOfInquiry (598897) on Tuesday November 16, 2004 @03:21PM (#10833660)
    That's the least all of us can do that believe in such things. He's done great work. Without his Slackware books and releases, I'd probably not be involved with Linux.
    • Wha????? I don't "keep a good thought" for people; I pray.

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

    • Faith can be handy, but nothing speaks like preventative action. Good dental hygiene. Seriously. Dead serious. More and more evidence is pointing to poor dental health as a vector for disease [webmd.com] including heart disease and stroke.

      This writeup [nih.gov] on Pulmonary Actinomycosis (the possible disease in question here) reiterates that:

      Poor dental hygiene and dental abscess can predispose people to facial lesions and lung infections caused by these bacteria.

      So get to those twice-yearly dental cleanings and bru

    • Same here (Score:3, Insightful)

      by Featureless (599963)
      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.
  • Proof (Score:5, Interesting)

    by Doesn't_Comment_Code (692510) on Tuesday November 16, 2004 @03:21PM (#10833668)
    Actions like this (trying to help another) are what really make a community. The fact that people pull together to help another person, whom they probably don't know, proves incorrect those who criticize this community as many takers feeding off of a few givers.

    At times, I can see their point. Many people download software/use manuals written by other people, while relatively few contribute actual code (guilty myself). But actions like this allay my concerns and show there really is a true community here.
    • Re:Proof (Score:3, Insightful)

      by epiphani (254981)
      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 e
  • by binaryDigit (557647) on Tuesday November 16, 2004 @03:22PM (#10833690)
    "Extended Exposure To Linux Proven to be Dangerous to Your Health!"

    Not only is Linux less secure than Windows for computer bourne infectants, but recent studies have shown that users who have extended exposure to the operating system come down with other human based diseases at a rate greater than 100% greater than Windows users.

    In related news, SCO guarantees safety from infection by end users who pay their modest licensing fee.
  • 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 Yaztromo (655250) <yaztromo@NoSPaM.mac.com> on Tuesday November 16, 2004 @03:37PM (#10833921) Homepage Journal
      If you have a multi-year problem, go do the doctor!

      Ah, so is that the secret to getting good health care in the US? ;)

      Yaz.

    • 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....

      • 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 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.

    • But yes, you really shouldn't self-prescribe antibiotics. Even if you think you know what it is you have, go see a doctor anyway.

      And while I'm at it: take the whole course. Don't stop just because your symptoms go away.
    • by volkerdi (9854) on Tuesday November 16, 2004 @03:47PM (#10834072)
      Although he doesn't come out and say it, it appears that he was treating himself with antibiotics.

      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.
      • RTFA (Score:5, Funny)

        by asoap (740625) on Tuesday November 16, 2004 @04:17PM (#10834504)
        Dude, what?!

        RTFA! He clearly states... just kidding.

        I sincerely hope you get better, and I wish you have a speedy recovery.

        All the best.

        -Derek

      • by teromajusa (445906) on Tuesday November 16, 2004 @07:20PM (#10836784)
        Hope you find treatment that works. Sorry most everyone on slashdot is more interested in moralizing and critiquing your past choices than actually providing any help. I did see one actual piece of information that might help. In case you missed it:

        One of the deservedly most-celebrated ID doctors in the world is Ralph Feigin at Baylor/Texas Children's [texaschild...spital.org].

        Anyway good luck and thanks for all the Slack! Wouldn't be a programmer today without it!
      • 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 yo

    • by Fnkmaster (89084) * on Tuesday November 16, 2004 @03:54PM (#10834159)
      About 10 minutes after your post, Patrick himself posted to this thread clearly indicating that the Cipro he is taking has been prescribed and taken under the supervision of doctors all along. So it doesn't appear that your criticism is well placed here.

      Nonetheless, I agree with you in general, you shouldn't be self-prescribing antibiotics (well, unless you're a doctor), especially not those like Cipro.

      And taking antibiotics unnecessarily or without taking a full course of them does your body and the rest of the world more harm than good by creating more antibiotic resistant bacteria.
    • 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.

  • by Andrew Sterian (182) <andrewsterian@yahoo.com> on Tuesday November 16, 2004 @03:26PM (#10833753) Homepage
    Go to The Slackware Store [slackware.com] and get a cute little penguin, or preorder Slackware 10.1. This is not a bad time to show Patrick some appreciation for what is IMHO still the best distribution out there.
  • by fred87 (720738) <mail AT fredemmott DOT co DOT uk> on Tuesday November 16, 2004 @03:29PM (#10833797) Homepage
    - RE those "It's inconsiderate to post this on slashdot":
    "Now, I'm hoping that this will get seen by a lot of people and that if it hits Slashdot that some kind medical geek will help save my life."

    - Mirrors:
    http://uml.axpr.net/ [axpr.net]
    http://slackware.osuosl.org/slackware-current/PAT- NEEDS-YOUR-HELP.txt [osuosl.org]
    ftp://ftp.slackware.com/pub/slackware/slackware-cu rrent/PAT-NEEDS-YOUR-HELP.txt [slackware.com]

    - Clarifications:
    --he does not want a help fund - we've asked him.
    --the gpg signature is valid, key is on the slackware 10 disc, and he keeps the private keys on a computer which is not attached to the internet.
  • by HotNeedleOfInquiry (598897) on Tuesday November 16, 2004 @03:30PM (#10833801)
    On an IV antibiotic drip. My wife had complications after an appendectomy. The resulting infection took 2 weeks in the hospital with an antibiotic IV, plus 2 drain tubes into her belly. The doctors were quite clear that the only way to fix an internal infection is with drains and IV antibiotics. I hope he'll get in and get fixed.

    Disclaimer: I am not a doctor and this is not medical advise.
  • 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.
  • Mayo Clinic (Score:5, Informative)

    by agressiv (145582) on Tuesday November 16, 2004 @03:33PM (#10833853)
    Being in Fargo, he's only 5 1/2 hours from Rochester, MN, where the Mayo Clinic [mayoclinic.org] is. I'm not sure if its warranted, but I've known a few people who have gone there under similar circumstances when all else has failed.
    • Re:Mayo Clinic (Score:5, Informative)

      by jangobongo (812593) on Tuesday November 16, 2004 @04:06PM (#10834349)
      The Mayo Clinic [mayoclinic.org] came to my mind too. He should get his doctor in Fargo to contact the Mayo clinic, tell them he has to be seen ASAP and don't take no for an answer or let them put him off.

      In my experience (our family dealt with a rare infectious disease - Kawasaki's - in which I knew more about it than our doctor thanks to the internet), doctors are fascinated by a chance to treat a rare disease that they don't see too often, esp. at a teaching/research hospital. Get going already!
    • Re:Mayo Clinic (Score:3, Interesting)

      by Bruce Perens (3872)
      I've been to Mayo. If I hadn't gone there, I would probably have been on chemotherapy for a long time for something that turns out not to be malignant. I might not have been able to father little Stanley (chemo can make you sterile). And three other patients in Berkeley would have been on chemo for too long, as well. They went off after my doctor at Mayo corresponded with my doctor in Berkeley.

      This is how I got there: I asked my doctor in Berkeley for a paper by the leading researcher on what I was sufferin

  • Hey folks (Score:5, Informative)

    by volkerdi (9854) on Tuesday November 16, 2004 @03:38PM (#10833936)
    I've been getting some mail over this, and most of it is positive stuff that has me feeling better right now. Thanks. :-)

    One thing I'd like to clear up is that I am not now, nor have I ever been self-medicating with Cipro or any other antibiotics. I've always taken them under the advice of and with a prescription from a qualified medical doctor.

    Again, I'm feeling better and hope it continues. Thanks for the well wishes!

    Pat
    • by Alan Hicks (660661)

      I've got plenty of penicilin shots you can have. Just ignore the equine lable.
    • 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: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.
    • Re:Hey folks (Score:4, Informative)

      by tickticker (549972) <tickticker@gmail.LISPcom minus language> on Tuesday November 16, 2004 @04:09PM (#10834390) Journal
      Good to hear you are feeling better.

      The long term IV anti-biotics are no big deal. They give you a PIC line that you can have for over 6 months, and the pump is in a fanny-pack. Almost no schedule interruption except you have to waterproof your arm in the shower. I've had 3 for various infections over the years and you just deal with them then they're over.

      Tickticker

      --
      Made you look
    • Treatment Options (Score:5, Informative)

      by WombatControl (74685) on Tuesday November 16, 2004 @04:12PM (#10834433)

      You need to seek qualified medical treatment.

      Your best options are at the University of Minnesota, which is about a 4 hour drive, or the Mayo Clinic in Rochester, about a 5 hour drive. Either one will have doctors who are trained in the treatment of infectious diseases. I would first visit the hospital in Fargo and make sure you fill out a HIPAA release so that they can forward your records onto the appropriate hospitals.

      It's clear you have an advanced infection that is not responding well to various treatments. The risks of developing an antibiotic resistant infection is very high with prolonged use of drugs like ciprofloxin.

      If you need help, my cousin is a doctor at the U of M (in oncology/hemotology) who would be able to at least get you in touch with the right people there.

      • by RedBear (207369)
        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.

    • 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.
  • Good Article (Score:3, Informative)

    by cheshire_cqx (175259) on Tuesday November 16, 2004 @03:39PM (#10833960) Homepage
    http://www.emedicine.com/MED/topic31.htm [emedicine.com]

    Prognosis:

    * When actinomycosis is diagnosed early and treated with appropriate antibiotic therapy, the prognosis is excellent.

    * The more advanced and complicated actinomycotic forms require aggressive antibiotic and surgical therapy for optimal outcome; however, deaths can occur despite such therapy.
  • by Sygiinu (226801) on Tuesday November 16, 2004 @03:41PM (#10833990)
    I'm not an Medical geek, but the "yellow lung granule" sounds to me like it could be a tonsillolith.

    Tonsilloliths are some times called "tonsil stones". I'm aware that he maintains the granule came from the lung, but I'd be interested to examine the throaght and tonsils throughally to eliminate that posibility. I'm also aware that tonsilloliths or similar objects can form much further down than the tonsils.

    I'd be interested in whether the paitent had a history of tonsilitus, ear infection, post nasel drip or other sinus trouble.

    I'd try to find an ENT (Ear nose and throaght) surgen to discuss that with (and if s/he hasn't heard of tonsil stones go somewhere else or take some info from the web). Next stop would be a lung specilist, and someone to investigate the stomach and esophagus.

    Does anyone have an E-mail address where we can contact him if we can't call him by telephone?

  • Emory (Score:3, Interesting)

    by jav1231 (539129) on Tuesday November 16, 2004 @03:42PM (#10834002)
    I might suggest a trip here to Atlanta. Emory University Hospital is located right next to the CDC here.
    On the other hand, finding an old country doctor might do the trick. I once had a gland or something under my armpit swell. Local hospital in Alabama at the time had no clue what it was. We were dirt poor in those days and a friend of ours drove us out to this old doctor's house. He looked at it, hobble back behind his counter and drug out a an old medicine bottle (remember when persciptions came in those old brown bottles?) and scowled, "Here. Give 'im this 3 times a day and put a heat pad on it!" My Mom said, "Okay, when do you want to see him again?" "See who?" he said. "My son, to see how it's doing?" she replied. "See how what's doing? There won't be anything to see!" he said. He was right. You can insert all the jokes about how hard it really is to stump an ER doctor in Alabama, but the old dude was right on!
  • Strange story (Score:5, Interesting)

    by InternationalCow (681980) <mauricevansteensel&mac,com> on Tuesday November 16, 2004 @03:47PM (#10834069) Journal
    As a qualified /. MD I can tell you that this is an oddnstory. Now, where the actinomyces bit comes from is a mystery because his letter doesn't mention it. The complaints he lists are not typical of anything but the consistently normal results of CT/Thorax and lab (the deviations he lists are not significant) suggest that some of it may be more mental than anything else. That said, some complaints can be consistent with a diagnosis of pleuritis/pericarditis or even pulmonary embolism. However, the additional investigations should have uncovered this. An infection is not very likely all considered. Why was nothing cultured? If Volkerding is expectorating, stuff can be cultured. Apparently no such material was available. In extremis, direct puncture of suspicious lesions can provide material for culture or PCR.
    Actinomyces species, to name one cause of infection that seems to be relevant to this discussion, causes lung abcesses that lead to spitting of blood and fever and such. It is also associated with immunosuppression, ie in HIV infection or when on organ transplant medication to name a few. In all, no convincing case for an infection.
    Lastly, I find this plea for help via the Internet rather odd. One might imagine that a well-educated person like mr. Volkerding should be able to find his way to proper medical care. The consistent failure of several doctors using pretty advanced technology to find any clear abnormality combined with the absence of typical symptoms suggests to me that mr Volkerding may not suffer from any physical abnormality at present.
    • 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 ...
    • Re:Strange story (Score:4, Informative)

      by InternationalCow (681980) <mauricevansteensel&mac,com> on Tuesday November 16, 2004 @06:45PM (#10836459) Journal
      OK. I now read the rest of his letter. Didn't come through in the first go. It doesn't make things any better. Worse, really. While commendable, the googling is not helpful at all. His MD apparently believes in the presence of actinomyces WITHOUT culturing and is content with it being specified as israelii without grounds. Then, he gets prednisone (my guess would be to reduce dyspnea) after having started antibiotic treatment: -without culture -with a narrow spectrum antibiotic' -to which many micro organisms are resistant. Sloppy. If the antibiotics do not help the pred will make things worse. As stated in other posts (including by me) mr Volkerding needs to seek COMPETENT help and stop f*ckin around trying to doctor himself and going to people of questionable skill.
    • 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.
  • Dental Hygiene (Score:3, Informative)

    by goldspider (445116) <ardrake79.gmail@com> on Tuesday November 16, 2004 @03:49PM (#10834101) Homepage
    He got all that from not brushing his teeth enough?

    I know there's lots of jokes out there (and here!) about geeks and hygiene and all that, but this should serve as a reminder to all of us.

    Keeping healthy is just like running a secure server: proper maintenance is vital.
  • by rnd() (118781) on Tuesday November 16, 2004 @03:54PM (#10834166) Homepage
    Head for your nearest big research hospital.

    Lots of people die because the local doctors have never seen the 1 in 10000 disease they present with.

    Get yourself to a big research hospital's ER immediately and your chances of survival will be much better.

    Big research hospitals are the ones where people with 1 in 10000 illnesses are sent, and so the doctors there know what to look for. Also, you're more likely to be seen by a med student or resident who has most liklely read about your illness much more recently and is more likely not to rule it out due to its seeming implausibility.

    A word of advice: Don't overly pre-diagnose yourself. Just go in and tell your symptoms. If you go to an automotive machanic and tell him your radiator is broken he'll replace it and charge you for it, even if it was just a hose. This isn't about cost, though, it's about your health. Don't pretend that you are more of an expert than you are!
  • 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 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.

    SO FOR CRYING OUT LOUD...GET MAD!!!!!!!!!

    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 runderwo (609077) * <{gro.niw.liam} {ta} {owrednur}> on Tuesday November 16, 2004 @05:54PM (#10835886)
    A lot of people are expressing their frustration with doctors and their apparent "incompetence" or "arrogance" with respect to following established medical procedure instead of accepting a patient's self-diagnosis at face value.

    The thing you have to remember about this is that doctors are being barraged with malpractice suits these days. The reason they follow established practices even when the patient becomes frustrated and insults them for it, is because if they deviate from that practice, then they have less defense in the case that the patient in question turns around later and files a malpractice suit when things don't turn out the right way, and if they are declared guilty of malpractice, their insurance company won't cover the losses if they were found to be deviant. Why would a MD invite trouble that way?

    Of course, if all the sue-happy buffoons would chill out a little bit, maybe MDs would be more willing to go out on a limb, but unfortunately that's not the state of things these days.

  • by geekotourist (80163) on Tuesday November 16, 2004 @06:51PM (#10836515) Journal
    I'm not writing about Pat Volkerding-- he's been seeing doctors and seeking treatment, and I wish him well as he goes to the hospital today along with several friends or family members who do everything possible to keep him there. Hacking the medical system and insurance system is itself a skill we do all need. And, yes, we can do specific things to make ourselves healthier-- reprogram bad habits and all that.

    I'm writing in general, about engineers and computer scientists (guys especially) who think that the heuristics of their profession give them any extra advantage over the general public in self-diagnosing illnesses. Its the opposite-- your tools and knowledge, so good for your profession, can harm you when it comes to medical treatment.

    Yes, medicine itself is still primative, we've only just built MRIs that can see metabolism [spectroscopynow.com] by imaging C,N and O on top of H20. Medical error is a leading cause of death [nap.edu]. Doctors can believe that real illnesses aren't just psychological - it took medicine a while to accept that bacteria caused ulcers. Sometimes unpatented, ordinary vitamins help with a major symptom of a major illness [nih.gov] (and if you have or know someone with diabetes- read the research and go get some benfotiamine!). Medicine is like that.

    But the heuristics of medicine are far better than any other for dealing with illnesses. Non-medical common sense is orthogonal to medicine- if it gives good results that's just luck. But given how easily people are helped by placebos, how good are we going to be at telling if a particular treatment is working or not? Given how we can tune out outside signals when working on something (like the need to eat or drink), how often are we going to miss far more subtle clues? Given how personal psychology can make it hard to admit to feeling pain or to talk about body weaknesses (especially guys), how can we make sure that we're telling the doctor all relevant clues? Given how most medical research on the net is in the form of abstracts, not full articles, and given our strong abilities to find patterns (even where there aren't any), how easy is it to be side-tracked into thinking we've diagnosed ourselves when we haven't? Unskilled and Unaware of It: How Difficulties in Recognizing One's Own Incompetence Lead to Inflated Self-Assessments [apa.org] is an intensely applicable article to everyone.

    I recently had a relative who died [slashdot.org]. With Staphylococcus aureus pneumonia your odds aren't good, but they're far worse if you don't know if you have the methicillin sensitive or the methicillin resistant version: the antibiotics for MRSA don't work very well on MSSA (the reverse is, of course, obvious).

    Very tiny differences in what illness you have can make big differences in what treatment you need. Only medical tests- not all the reading and self-diagnoses in the world- will find those differences. Making sure you get those tests- that's hacking the medical and insurance system. Thinking you can figure out on your own what you have or whether or not a treatment is working? That's trying to hack your own body, and our self-assessments on how well we do that aren't very good. Our own self-diagnosis system is worse than the one in Windows (and for spaghetti code without any comments see dna).

  • by wobblie (191824) on Tuesday November 16, 2004 @09:26PM (#10837993)
    A while back I was dealing with constant low grade fevers, nausea, dizzy spells and crippling fatigue. I didn't even realize I had fevers until I started monitoring my temperature and realized I was always around or just under 100. I went to two doctors, none of whom could find anything wrong with me; blood tests seemed normal (personally I think they rely too much on blood tests, it's as if they just give up when they don't give them an answer). This sort of thing came and went for about a year, until it finally became too much to bear, the fevers shot up to 102 or so and I'd get frequent chills.

    Then all of a sudden I got a terrible toothache. I had a wisdom tooth that had broken years ago and now all of a sudden it was hurting. I had it pulled ($200), took some antibiotics the surgeon gave me and within a week all these symptoms vanished. I did mention the tooth to the doctors I saw but they didn't think much of it. I don't know for sure if that was the problem but it seems that way to me.

It's a poor workman who blames his tools.

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