Slashdot Mirror
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!"
At least he has a sense of humor.
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
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.
"Eve of Destruction", it's not just for old hippies anymore...
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.
Slashdot Syndrome: the sudden, extreme urge to correct someone in order to validate one's self.
You can start by pulling your head out and clicking on the mirror which works fine for me and probably everybody else that clicked on it. Since that didn't work for you or you didn't see it, read below.
-----BEGIN PGP SIGNED MESSAGE-----
Hash: SHA1
Tuesday, November 16, 2004, 10:43
"Last post?"
Hi folks. If you're reading this, I thank you. Perhaps you'll have a role
to play in bringing about the miracle that I desperately need. First, I'd
like to apologize for the lack of updates lately in Slackware -current and
stable... I know there are a few outstanding issues that need to be
addressed. However, I've been too sick to work for a couple of weeks and
now I am away from my computers and at my parents' house in Fargo, North
Dakota where my only online access is through an AOL dialup. I have told
only a select few people about what's going on thinking that I did not want
the internet at large to know about this, that I'd get it taken care of
and get back on track without a major problem. 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.
I've generally been a pretty healthy guy. Nobody I know would characterize
me as a hypochondriac by any stretch, so when I raise an alarm it tends to
be for real. I'm going to give a timeline and run through all the
symptoms I've had (so if that sort of thing grosses you out, you can stop
reading right now). For the rest of you, here goes. This is going to be
long, but hopefully somebody who can help will read it...
This all began quite some time ago, perhaps as long ago as May of 2001.
I was preparing Slackware 8.0 for release and working really hard. A pain
developed in my shoulder, and (too busy to do anything about it right
away) I ignored it and continued to keep working. It got to be pretty
bad and one afternoon in early June I was rushed to the emergency room
at a hospital in Concord, California. I was sweating, feverish, with a
weak pulse of around 50, experiencing chills and seeming to be on the
verge of passing out. The doctor who saw me did a chest X-ray and didn't
think it was too unusual. I was told it was probably bronchitis and was
sent home with a presription for ciprofloxacin which mostly cleared up
the problem. Still the pain in my shoulder seemed to vaguely remain.
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 (no small
task as this was right after the infamous Anthrax mailings when all the
newspapers were running articles about Cipro and people were trying to
horde it). I finished the two month course of antibiotics and felt
better. Not perfect, but significantly improved. I chalked the events
of 2001 up to stress, but in retrospect I am not so sure. I had
similar problems in 2002 and 2003 that were also knocked back with some
antibiotics, but the pain in my left upper back (and some kind of
"presence" there) never did fully clear up. Tests for TB came back
negative.
Fast forward to May of this year. I found myself complaining about "my
usual pain", as I had started to call it, more and more. I was starting
to wonder if I was even going to be able to make my annual camping trip
out in western New York state at the beginning of July, but I did go.
I figured the sun and a little exercise would do me some good, and I
did feel a little less like I was "fixin' to die," but upon my return
to California things started to do downhill for me again. This whole
time I was coughing up some strange stuff. Some of it was white and
reminded me of dental plaque. In spite of being a dentist's son I've
never had the best oral hygiene
This guy is way out there
"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.
WebMD didn't have anything that I could find, but a google found this eMedicine
I am not anything near a Md so this makes no sence to me. But as they say the half of knowledge is knowing where to find knowledge.
500 dollar reward for tip(s) leading to the arrest of the person(s) who stole my sig.
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.
"Format hard drive
apt-get update
apt-get dist-upgrade
and call me in the morning"
That might work for one of the Debian developers, but not here. Pat's doctor has to configure him cell by cell.
As per the dude's post, googling for sulfur lung granules works fine.
The first hit is fine.
There are no trails. There are no trees out here.
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!
>With TFA slashdotted, I don't know exactly what he wants. How do I know if I can help?
TFA has already been cut-and-pasted into the Slashdot thread. To summarize:
If you are an infectious disease specialist who can prescribe high doses of antibiotics (presumably penicillin-based, delivered by IV), and/or admit him to a hospital, you're supposed to call him or email him, and that goes double if you have experience treating Actinomycosis.
Go to The Slackware Store 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.
- RE those "It's inconsiderate to post this on slashdot":
- NEEDS-YOUR-HELP.txt u rrent/PAT-NEEDS-YOUR-HELP.txt
"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/
http://slackware.osuosl.org/slackware-current/PAT
ftp://ftp.slackware.com/pub/slackware/slackware-c
- 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.
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!
Interesting how I tried to type "911" and it automatically came out "9-11", eh? Too much election makes Skyshadow something something.
Every year during my review, I just pray the words "slashdot.org" aren't mentioned.
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
Being in Fargo, he's only 5 1/2 hours from Rochester, MN, where the Mayo Clinic 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.
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
Actinomycosis
It is by the juice of the coffee bean that thoughts acquire speed, the teeth acquire stains. The stains become a warning
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?
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.
----- One learns to itch where one can scratch.
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.
..........FULL STOP.
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.
"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.
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.
RTFA! He clearly states... just kidding.
I sincerely hope you get better, and I wish you have a speedy recovery.
All the best.
-Derek
Treat me like a marketing stat, and I'll treat your movie like a series of ones and zeros
...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!
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.
LRC, the best-read libertarian site on the web
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
He went to the wrong doctors. When dealing with a bacterial infection, you need an INFECTIOUS DISEASE SPECIALIST. You can find them associated with large medical centers. Bacteria are hard to defeat, they can be tolerant of antibiotics, so a multi-drug therapy has to be used. Bacteria can encyst themselves when exposed to a hostile environment, to reappear later. All cysts must be drained. This can be minor surgery when they are in muscles, or major surgery when involving a major organ (like a lung). This isn't to be played around with, they can easily kill. Most doctors don't have the knowledge to treat them. Get to an INFECTIOUS DISEASE SPECIALIST immediately! There aren't that many of them, and most are associated with large institutions or university teaching hospitals. Get on it now, your life is in jeopardy.
From what I read till now:
a) Actinomyces israelii is anaerobic. So, hyperbaric oxygen is bad for it. You know, enter a pressurized chamber with oxygen. You're gonna have fun.
b) Prognostic is good, but treatment is painfully slow. You'll use penicillin but probably will also go under surgery to remove disease agglomerates form your lungs. At least, this is what I've read (and Medicine in Brazil is quite advanced). Google for "actinomicose pulmonar", at least you can see the pics.
c) I don't if it will happen to you, but there is a facial variety. You get lumps, much like if a big wasp had bitten you. Your skin eventually tears (this is called a fistula) and you can see a red tissue. I hope you can avoid this.
More info as I come by. Get well. Damn, next time be sure to know the _reason_ why things happen!
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.
This mentions "anecdotal evidence" of hyperbaric oxygen usefulness:a l/section13/c hapter157/157e.jsp
c tion13/c hapter157/157e.jspe plus/ency/article/00 0599.htm1 3-86702004 000200011&script=sci_arttext&tlng=enh ealth.xq23.com/conditions/part_1/Actin omycosis.html
9 /v12.n02 /1202.10/art-1202.10.htm
_ adam.cgi /encyclopedia/ency/article/000074trt.htm
x .htm ). I have no affiliation with any of these companies.
:-(
1 7.htm
http://www.merck.com/mrkshared/mmanu
Other links:
http://www.merck.com/mrkshared/mmanual/se
http://www.nlm.nih.gov/medlin
http://www.scielo.br/scielo.php?pid=S14
http://www.
This link is tricky, you may have to hit "stop loading" quickly, because the page is redirected to the current issue:
http://www.familypractice.com/journal/199
You probably don't understand Portuguese, but...
http://www.connectmed.com.br/cgi-bin/view
Also, I've seen a page (not shown here) talking about cancer induced by radiation treatment of actinomycosis lesions. Beware!
Your chances are good, I think. But avoid things that weaken your immune system, like sleeping too little. Also, this is a fungus, so try to get some solar radiation and fresh air.
Are you a smoker? I seem to have seen a description of pulmonary case in a smoker patient.
Another hint: there are some devices called "air purifiers" which kill fungus. A known brand over here is Sterilair (see, e.g., http://www.marcoware.com.br/sterilair/ingles/inde
You surely should have an equivalent product where you live. But, this may be useless, as it works by heating air, therefore killing spores -- which are NOT produced by actinomyces...
Anyway it may have some air drying effect, which I suppose would slow fungus development.
Also, try to think out of the box: what would you do to strenghten your immune response, particularly against a fungus? Does it have a non-pathogenic enemy you could use? Does it die with extreme low temperatures? Or extremely high (you could inhalate hot air with medication)?
Alternatively, and I have no idea if this works, you could breath special treated air only for some time -- artificially mixed or natural, like in this Poland mine: http://www.kopalnia-wieliczka.pl/english/trasa_t/
Sorry if I am shooting in the dark, but maybe some Polish friend knows something about this...
Good luck! And God bless you for all you've done.
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
This sig intentionally left blank.