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
Patrick, thanks for keep us in the loop. Im praying for you. Good luck guy and God bless.
http://www.freebsd.org
"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.
Helpful tip: If you're feeling like you might die, you just might. Seek immediate medical attention, not advice from /.'ers.
Every year during my review, I just pray the words "slashdot.org" aren't mentioned.
- 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.
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.
"Eve of Destruction", it's not just for old hippies anymore...
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.
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.
Diagnosis is rarely suspected or made on clinical grounds. Usually, the clinical laboratory or the pathologist provides diagnosis.
Patients present with nonspecific symptoms and findings, such as fever, weight loss, diarrhea or constipation, and abdominal pain. Extension to the perirectal space is not uncommon and these patients present with defecation complaints.
-----------------------
So basically we have a disease that doctors can't even disgnose reliably most of the time, with very nonspecific symptoms ranging over a huge range.
I hope he gets a good doctor that totally ignores his self-diagnosis. The ones he has dealt with in the past seemed way too likely to just give him what he wanted without making a real diagnosis.
I've had enough abrasive sigs. Kittens are cute and fuzzy.
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
http://www.emedicine.com/MED/topic31.htm
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.
Ah, what a fine opportunity this situation presents for you to indulge in polemic... asshole.
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?
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!
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.
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.
"Ask not what your country can do for you." --John F. Kennedy
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!
Amazing magic tricks
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.
I just emailed this to PV, but thought I'd share it here as well. One very overlooked chronic infection problem in CA and other southwestern states is valley fever. This Arizona Univ site explains it a bit: http://www.vfce.arizona.edu/. It's often misdiagnosed as a bacterial infection, but it's actually a fungal infection, so antibiotics may knock down secondary infections but do nothing about the primary cause. There's probably a ton of people out there in the affected areas or who have visited the affected areas who have chronic coughs, fatigue or other symptoms that go undiagnosed or worse, labeled as hypochondriacs, because this disease is so poorly screened for by clinicians. Even if a patient brings it up, they'll often only do a chest xray instead of cultures and microscopic inspection of fluid. People who move into the area as adults and who spend time outside in dust storms or working in the soil are at prime risk. Children born in the affected areas tend to pick up immunity from mild infections in childhood, but may still suffer problems (I often wonder if the rise in asthma in the areas is really due to the ag pollution and/or smog as commonly suggested or if there's a valley fever component too). Those who work in construction, agriculture or oil might think twice before relocating to the affected areas as this risk is often poorly explained to workers. As someone who has grown up in a strongly affected area, I constantly find myself explaining to people why staying sealed inside during windy/dusty days is well advised. I remember a decade or so ago the disease got a lot of local attention because a popular weatherman from the area became seriously ill (ie in the hospital for weeks on antifungal drips and still nearly dying) from valley fever, likely picked up when he was outside covering a dust storm. Nasty little disease when it hits seriously. Life affecting even when just a moderate chronic infection.
"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.
From wikipedia:
Gomer: Stands for "Get Out Of My Emergency Room". This applies to anyone who comes in for a bogus reason. For example, a person comes in drunk rating less than 50 on the blaylock scale. Gomer was first introduced in the book by Samuel Shem "The House of God" - a nickname for a teaching hospital.
"And a voice was screaming: 'Holy Jesus! What are these goddamn animals?'" - HST
Did you even RTFA? He's been to the ER multiple times; no one is really taking into account the gravity of this issue every time he goes. The ER is a hectic place and it's pretty obvious this isn't a run-of-the-mill illness; continuing to go back is NOT going to suddenly make them wake up and do the research to figure out what this shit is.
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
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 including heart disease and stroke.
This writeup 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 brush/floss. Plus with the thousands of dollars you save on not getting root canals and crowns, you can buy an awful lot of tech hardware....
Bah! bullshit... tell all this to my friend Robert... oh wait, you can't, he's fucking dead. He had no insurance and literaly had a tumor the size of a fucking softball on his pancreas. The first two "doctors" gave him some bs and sent him on is way. Only after we got him on Medicaid did anyone bother to give him the time of day. His symptoms were classic, big bulge sticking out of his side, bleeding gums etc. and yet he was absurdly mis-diagnosed twice.
As far as google knowing more than a doctor... WTF can't a doctor with all that education and information google for themselves? Aparently not or they aren't willing to take time out of their golf schedule to do so.
I've had a pain in my upper right abdomin for a few years now... they did tests upon tests performed surgery and removed my gall bllader and yet I still have the freakin pain. I even asked the surgeon to look around at that area while he was removing my gall bladder because I know it's way higher than my gall bladder and after surgery when I asked him if he saw anything he gave me a blank look and didn't even remember our earlier conversation. So now I can't drink milk unless I take Nexium daily and I still have that pain in my upper stomach, thanks so much doctors.
One of their theories was I had some disease where the iron build up in your bloodstream and were getting ready to start the bloodletting when someone realized that the amount of iron reported on my blood test was impossibly high... so did they do another test?? hell no, since the iron levels were too high to be possible then it must be impossible for them to be reasonably high. Of couse I researched that disease (I can't remember the name) and the symptoms didn't match up to mine in the least anyway.
The problem with antibiotics is mis-use... First off don't take anyhting until you absolutly have to and then make damn sure you take enough to kill every last germ before stopping.
I hope it's just like this at the doctors we've gone to in central Indiana and the rest of the country actually has well-meaning and inteligent doctors.
So Patrick you do whatever it takes to get this figured out and anyone who is telling you how stupid you are for self-anything to go to hell. Don't be afraid to make a scene at the Doctors's office to get them to take you seriously, if you don't they could just let you die.
Did you even RTFA?
Not all of it, no. But it doesn't matter. If the ER he's gone to doesn't admit him and he thinks they're wrong, he needs to go to the ER of a hospital where they're not going to brush him off if he's not a run-of-the-mill disease. And if a place like that doesn't exist in Podunk North Dakota, he needs to go to a real hospital.
I don't know any doctors who would implicitly trust someone's internet self-diagnosis.
Surely someone from the hordes of Ximian or other people in Boston can spot him a bed so he can go to Mass General or something similar in New York.
Prescribing any medication for someone over the phone - especially for an infection refractory to initial medical care is wrong and will do more to hurt Patrick than help him. Believe me. There are proper protocols for this and they work well. Get him to a hospital where weird stuff is regularly seen (any large medical center) and get him into the ER.
I strongly suggest taking acidophilus pills or similar while on any antibiotic to ensure it doesn't screw up your digestive system too badly, and keep taking them for a few weeks after treatment is complete.
WARNING: I am not a doctor. Do not take anything from here down as medical advice....
To the author:
I noticed you didn't mention having taken any -mycin family antibiotics. If the diagnosis is correct, something in that family should probably be combined with penecillin, from what I've read.
You should also have yourself checked to see if you have any diseases that mess with your immune system. A blood test should be able to detect AIDS, leukemia, etc. if present. Unlikely, but it can't hurt to be cautious in cases where the diagnosis is so murky.
That said, my hunch is that, through knowing too much, you're instinctively combining symptoms of multiple problems into one, resulting in the appearance of a problem far worse than the actual issue. The white plaque-like bits are likely dried mucus, and the yellow ones, probably the same. The popping feeling and chest pain is probably caused by large amounts of post-nasal drip and chest congestion. I get it all the time, though not to anywhere near the degree you describe. It is usually allergic rather than bacterial. And your back pain could easily be explained by posture while using a computer.
My advice: do yourself a favor and go back to where you grew up for a few weeks. Get some fresh air, get on prescription allergy meds if you feel any facial pressure, do another round of antibiotics if your doctor thinks it makes sense, and if you're having trouble breathing, aerosolized corticosteroids (asthma inhaler) might be needed temporarily until you're over this.
That said, I am not a doctor, and you should not take this as medical advice.
Check out my sci-fi/humor trilogy at PatriotsBooks.
Indeed. Back in 1996 I nicked myself shaving while in Texas on a conference. The next day it was all nasty and infected, but I thought "Hmmm, I'll get it treated on monday after I get back to Minnesota."
By the time I had gotten home the infection had spread further, and I spent the next 4 days in the hospital under observation, with an IV of antibiotics and feeling like complete crap. Took me over two months to really recover.
Seriously, leave the doctoring to MD's (google is *not* your friend when it comes to medicine), and make a bee-line to a doctor if you suspect you are ill.
...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.
I wrote Patrick to tell him that I personally suffer the same syntoms that he is going through.
I've been to see a specialist and he told me that this is related to not taking care of your teeth.
Below is a copy of the letter that I sent him:
Patrick,
My god, I'm reading the post you post on Slashdot and by god if I don't have the same thing. I've had this problem for YEARS and I mean like 10 years. Just to let you know, here are my symptoms. I have a somewhat like hole in my left tonsel. It use to be about once a month I would have this pain on that side of my throat. Somethimes this yellow or green hard stuff would come out of it. If it built up to much it would make me feel like my throat was going to close and also me cough. Now being a smoker, I thought that maybe it was throat cancer or something. However I'm only 28 so the chances of that are highly unlikly. This went on for I would say about 5 years until I finally went to a throat specialist down here in Boca Raton, FL.
Well here was the diagnose that he told me. This is a more common problem than you think. ALOT of people have this. What causes it? Not brushing your teeth, believe it or not. He told me that it is a bateria that builds up in your throat from food and what not. Brushing, flossing and rising takes care of the problem. You will never get totally rid of it and probably will have to live with it for the rest of your life like me. The thing is that ever since he told me this, I brush and floss on a daily basis. If I miss brushing my teeth for even one day, my throat feels and screwed up again. So naturally I make sure that I brush and floss at least twice a day.
For stuff in my throat, he told me that while I'm in the shower to stick my finger down where the hole is and to squeeze the crap out of it at least 3 times a week. It's a little disgusting, but what the hell, I don't have that feeling anymore and no more pain.
Personally if I were you I would do the same thing. Squeeze that crap out of your throat and make sure that you brush and floss your teeth twice a day. Make sure you FLOSS, brushing gets your teeth white, but flossing is what prevents all the diseases and what not that are gum related. You would be amazed it you did a search on Google for diseases that are related to people not taking care of their teeth. It's probably the easy way to prevent alot of the diseases that people have and they never do it.
I hope this helps you out. Good luck with everything and again, brush and floss your teeth brother. Go do it now!
cell phone and email in last paragraph...
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
While I can appreciate the problem he's having, I also see several signs of something else... Panic Attacks. I have relatives who've gone to ER over them and I've had some symptoms myself at stressful times. Until you experience it, it's hard to understand/believe. To me (and I am not a doctor) this guy seems to need a small dose of valium followed by continued treatment for the infection - or whatever his doctors agree it is.
BTW, Xanax can also help take the edge off anxiety, but I've seen what appear to be withdrawl symptoms last for months or years after it is stopped (not abruptly either).
This is just my opinion, don't listen to me.
With regard to "lung plaque" - Everyone is aspirating oral bacteria into their lungs on a daily basis. People with a normal immune system don't have a problem with it. I don't think that your fancy electric toothbrush had anything to do with the material that you were expectorating. The pain you describe could be cardiac and absence of evidence of a PE is reassuring. Anxiety can also cause those symptoms. Unlikely to be pericarditis - usually is positional and has EKG changes. Would recommend that you raise concern of your heart and possibly anxiety with your doctor. Good luck.
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.
Want to Know How to Cheat the GPL? Read On!
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!
It's been fixed and protected.
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
Following your links, pulmonary actinomycosis may be more appropriate. In the writing, he mentions bad dental hygiene and an electric toothbrush that may have caused or contributed to the infection. The symptoms described seem similar too. He should definitely see the specialist in these types of diseases (ID?) ASAP; he should be able to get an appointment later in the day or next morning at the latest - many doctors do understand the urgent need and will accommodate them. This is important since complications of pulmonary actinomycosis sound pretty bad and you don't want to get to those. As I understand from reading the full story, he has not been proactive about treating the illness for several years, but what can you do looking back? Better take care of it ASAP.
I AM NOT A DOCTOR. THIS IS NOT A MEDICAL ADVICE. CONSULT YOUR PHYSICIAN FOR MEDICAL HELP.
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
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 by imaging C,N and O on top of H20. Medical error is a leading cause of death. 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 (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 is an intensely applicable article to everyone.
I recently had a relative who died. 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).
I commend Patrick for being proactive and trying to self diagnose. Often, it is the determination of the patient that can make the difference in finding out what is wrong.
Two years ago, I self diagnosed a rare skin disease (27 out of 1 million) that my personal physician told me was a bruise. After 4 weeks it did not go away and she said not to worry that it will heal and that it was simply a deep bruise. Well, I did worry. Maybe it was skin cancer or something?! I didn't trust her. So I googled for a few hours and found a hit using "Cliff Drop Borders." My skin patch had this feature and when I googled it, low and behold there was my exact skin patch! It is called Atrophoderma of Passini and Pierini, a form of Morphea. I must say that was a very rewarding experience and I felt so empowered by the internet. This would not have been possible just 20 years ago!
When I returned to the doctor with print outs in hand, all the doctors came in to ask me questions, like they had never seen this case before and were genuinely curious to learn about it, like a was a Martian or something. In fact, they broke out their medical books and verified my findings and agreed with my diagnosis.
As a follow up, I went to see a skin specialist (Harvard Graduate) and while he was impressed that I diagnosed my condition, he scolded me for not demanding to see a specialist sooner. Your normal doctor will probably never be able to diagnose a rare disease. Fortunately, the disease has the same morbidity as the normal population, and often disappears on its own for reasons unknown.
Best of luck to Patrick, keep trying the doctors but there is nothing wrong with working in parallel on your own.
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.
Shut the XXXX up.
If you don't appreciate what doctors go through both physically and emotionally to treat their patients, then why don't you spend a few weeks at a medical school, or a hospital ward.
When you've had 9-10 hours of sleep per week while cramming your head full of information you MUST be able to recall at a second's notice you'll think twice before making outrageous comments like that.
I am personally offended. I chose medicine as a profession and if wasn't because I wanted to screw people out of their money. And I don't know about you, but I've met countless docs who went above and beyond their limits to help people, including those who had difficulties paying.
_ _ _ _
To the original poster - I quickly skimmed the detailed writeup, but I can't seem to figure out where in the country he is right now. If he's anywhere near NY, NYU/Bellevue has ID specialists who've seen a lot more rare cases than anyone in the middle states could possibly even imagine. If it's possible for him to get his butt to NYC ASAP, I am sure he could find an ID specialist to look at him.
E. Friedman
NYU Med MD-PhD Program
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!
However, senior doctors rarely put in that kind of time, and had zero reluctance to putting the junior doctors through that kind of stress. It became a sort of initiation rite. The health of the patients is not a factor, or they'd hire more junior doctors. There's no shortage of people who are interested. Supply vastly exceeds demand.
You say you care about patients, but can that be entirely true? You know yourself that you cannot function intelligently when deprived of sleep to that degree, and that endangers patients. It is true that that is the way the system is, but to what extent have you put pressure on your superiors to change it?
you say you're not into money, and that's probably true. Most junior doctors start off with strong feelings of wanting to help society. But they rarely stay feeling that way. Burned out on caffeine, stress and senseless deaths, most doctors soon develop a more callous outlook.
Will you be getting insurance against being sued for negligence? Probably. Why? Is it so hard to make sure you only do irreversible work when able to do so? Actually, yes. American society is driven by the clock, not by the quality. If you want quality, you work in a co-operative, where you've a pool of medical staff and the best one to fit the job does the job.
Such an "open source" approach to medicine doesn't exist in America. Co-operatives, of any kind, are thin on the ground in America. Sure, you could try forming one, but will you? Would you be willing to collectively pool your income and take a fixed fraction out, no matter how busy or idle you were?
If you bring "open source" to medicine, I would be willing to go to your collective for treatment. But would anyone else? Is the concept too alien to Americans, too "communal/communist" for the good ol' US?
Are you the equal of Mrs. Seacole? (Perhaps less well-known than Florence Nightingale, but probably far more important when it comes to the application of medicine to those in need, with little chance of any reward.) If so, maybe - just maybe - you're one of the good guys.
It's a small world and it smells funny; I'd buy another if it wasn't for the money; Take back what I paid (SoM)
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.
Let's face it, he caught something WEIRD! The real question is *why*?
Something fragged his immune system. When a person's immune system goes haywire they can catch just about anything. The "popping and draining" that he described is prolly his overclocked lymph nodes.
IANAD, nor do I normally play one on Slashdot but I'd hope that his doc would check for the following:
Lupus
Luekemia
Perhaps other folks, here, know more auto-immune ailments or diseases than I do.
Anyone else think Volkerding ought to fatten up? He sound pretty skinny!
After that, he gave me amoxicillin (because it was cheap and I was a student.) Slight improvement, then relapse. Doxicycline. No go. Erythromicin. Slight improvement, then relapse. Sulfa. Allergic. Cithromax. No go. And, finally, Clindamycin, which, after five months of this, had me on my feet in less than 24 hours. Clindmycin is well-known for killing people by colitis upon occasion, but given that I was getting steadily worse at that point, I would say it was definitely worth the risk.
It was some sort of anaerobe which was apparently very hard to get a culture of, but which was delighted to live in various portions of my anatomy.Erm. I can only assume that English is your second language. I wouldn't presume to correct any of your other mistakes, but I think the word you wanted was 'physician' and not 'physicist'.
Abusing antibiotics can be somewhat nasty. Not being given them can be just as nasty.
I used to be prone to sinus infections. Each time I moved and got a new doctor, I would go through the cycle: go in, tell the doctor I had a sinus infection. Doctor would say, 'Oh, it's just a virus.' I would tell him he was wrong, and then be sent home. I'd come back in a week, he'd take a culture, and three or four days later I'd go back in for a followup and get my antibiotic. It usually only took a couple of repetitions of this with each new doctor to convince them that I knew what a sinus infection looked like for me. But for the first couple of times, I would be incapacitated for a week and a half or so, and the infection would have spread to my chest and that would linger for another week afterward.
And that's just in a non-life-threatening situation. If something is getting really nasty and rapidly worsening, you throw what you can at it in the hopes that something will stick, because if you don't, then your patient ends up dead, and that doesn't help anyone any.
-fred
Sign #11 of Slashdot overdose: You see the phrase 'moderate Republican' and you wonder if that would be a +1 or a -1.
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.
Many years ago, I had a mysterious infection that knocked me flat. I would periodically develop a fever of 104-105 degrees (fahrenheit). After a few hours, this would subside and, apart from feeling extremely weak, I would be fine for a few days. It was not malaria. The original doctor I saw ran all kinds of tests, but was clearly out of his depth with my problem.
Fortunately, I was living in Bangkok Thailand where it is easy to find specialists in most medical disciplines cheaply and at short notice. I ended up seeing Dr Mattana Hanvanich (a fellow of John Hopkins) at the Bamrungrad Hospital. She is an outstanding doctor. The key, though, is that she had time to thoroughly investigate the problem.
One method she used might well be appropriate in your case. She asked me to keep a detailed diary of everything related to my condition. She asked me to record my temperature every two hours, note everything I ate, record when I slept, any symptoms. She read all that in conjunction with all the test results and eventually figured it out. The point though is that a single ten minute appointment by the best doctor in the world will probably not be sufficient if your case is unusual.
Whatever it costs, find a top specialist who can devote enough time to your case. If insurance will not cover it, maybe you should consider a flight to Bangkok. Dr Mattana's fees are ridiculously cheap by US standards (probably less than 10%). The Bumrungrad Hospital has an international reputation -- you can check them out on the Internet. If necessary, hospitalisation here will not break you financially either.
Panic attacks and stress will and can cause all the other symptoms he described. I know. I had all of them. I had many doctors look me over as well. I had the "popping" feeling inside my chest and went to the ER room many times only to find out it was nothing. I've had my head feel like it was "popping" or I was having an annurism only to find out it was nothing. I've gone into cold shocks of shivering while sweating non-stop. I've been barely able to breathe and felt like I was about to die. In the end, I was prescribed Xanax and was told to take half a tab whenever any of these symtoms appeared. What it did was chill me out, because when your mind it racing, it makes you feel things that you wont normally feel, and then it only feeds into itself the more you think about it... Xanax basically makes you stoned and mellows you out .. It basically opened up my eyes that everything I was feeling was in my head. A few months later I stopped taking the Xanax and whenever I felt like my chest was "popping" or if my limbs went numbs, I'd just tell myself it wasn't real and it went away.
Unfortnately, people who have panic attacks can't often be cured this easily. Many of them REFUSE to believe it is just in their head because those feelings are just SO REAL.
He has probably been told this same thing many times but refuses to believe it. The tone on some of his doctors sounded less than respectful. I am going to guess this was why.
It stayed in my jaw and lungs though.
The worst part was at one point it had swollen up so bad it killed a tooth, it popped and some yellowish-white paste came out of the side of my mouth.
It smelled worse then it tasted, which was.. well not nice.
This happened three or four times. I never went to see a doctor for it.
I also found, twice, what I thought of as being a calcium deposit in the back of my through. The skin around it was very red and irritated - and it made me cough. At times I would cough up what I could only equate to being really old cottage cheese - it was the right consistency and smelled like rotting milk.
This went on for quite a while, and got pretty bad at one point.
Eventually, largely because of the cottage cheese coming out of my lungs, I presumed it was being caused by my smoking habbit.
So, I switched to Newports because they 'felt good' when smoking them. Not I felt good, but the smoke felt good on my through and in my lungs. I spent the next month or so coughing out tons of crap, but I kept smoking them as I figured it must be clearing it out.
Obviously my problem was minor in comparison, though.
Having the popping sensation under armpits sounds like it's in his lymph nodes as well.
I certainly know this, if it comes back I'll treat it more seriously next time. I guess I never really thought about how long "I" had my problems - but it went on for atlesat a year before I even gave real notice to it. I equated the issue with a recent move and assumed it to be allergies, though, moreso I just really didn't care.
Having read this, next time I'll care a lot more.
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.
It's common in western states.
It affects the lungs.
It causes decreased oxygen in the blood (which may explain the elevation problems)
It would seem likely that the first doctors in CA would have diagnosed it if it was indeed hantavirus. So maybe I'm off base. It's easy to map a number of diseases into common symptoms, especially if a common symptom is that you just feel bad.
If I'm using a proprietary OS and the Terrorists (tm) nuke Redmond, I'm screwed. If I'm using an Open Source OS and the sole maintainer gets sick, I have quite a few options. I can keep up with security updates myself. I can compile from source (many Slack users do that anyway). I can switch to another distro or even to a BSD, with far more ease than I could switch from non-free OS's.
Chances are, anyone who would put Slackware on a mission-critical server is quite capable of maintaining it himself while Pat is recovering.
Slow down, cowboy! It has been 4 hours since you last posted. You must wait another few hours.