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Patrick Volkerding Battles Mystery Illness
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!"
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.
Alito: A vote for Alito is a punch in the eye to put that bitch back in her place!
This is open source on the extreme level... who wants to sign up for open heart surgery open source?
I like muppets.
I figure "send money" is the all purpose help. I don't know anybody (other then Bill Gates) where send money won't work.
evil is as evil does
But self-medicating like he did with the Cipro is part of the problem with medical care in this country.
/waiting for the superbug
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.
-- IANAEG - I am not an elder god.
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.
Fascism trolls keeping me up every night. When I starts a preachin', he HITS ME WITH HIS REICH!
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.
Alito: A vote for Alito is a punch in the eye to put that bitch back in her place!
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.
"we're trapped in the belly of this horrible machine and the machine is bleeding to death" - gy!be
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.
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.
From ScienceBlog (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.
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.
This is not a sig.
And, yeah, I'm praying for Patrick...
"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.
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!
... 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!)
...
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
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
My Web Site - www.ocean-liners.com
...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.
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.
Yahh, hiii haaaaa! -Major Kong, from Dr. Strangelove
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.
Want to Know How to Cheat the GPL? Read On!
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.
He's feeling better at this point, what exactly is the ER going to do for him?
/. 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.
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
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.
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
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