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Patrick Volkerding Battles Mystery Illness
Posted by
michael
on Tue Nov 16, 2004 02:10 PM
from the two-aspirin-and-call-in-the-morning dept.
from the two-aspirin-and-call-in-the-morning dept.
sethadam1 writes "Calling all Slashdoctors! Pat Volkerding, maintainer of Slackware Linux, needs your help. This morning, he posted his very detailed account (mirror) of his battle with Actinomyces here on the Slackware FTP server. Patrick has given his blood, sweat, and tears to the open source community for years in Slackware, one of the oldest surviving Linux distributions. If you can, please help!"
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"Last Post" (Score:5, Funny)
Reminds me of an old Joke (Score:5, Funny)
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
Parent
Get Help Now, Maybe? (Score:4, Insightful)
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.
Re:Get Help Now, Maybe? (Score:4, Insightful)
Ditto, get thee to an ID (Infectious Disease Fellow) Right now. I know many in the NY area, but if your dad "is in the medical community" find someone. This type of infection needs to be treated agressively.
Parent
Univ N. Dakota Medical school GO THERE! (Score:5, Informative)
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.
Parent
Re:Univ N. Dakota Medical school GO THERE! (Score:5, Informative)
Great referance, for those non medical types, the med school saying is something like "When you hear hooves, think horses, don't think zebras". In other words, think of the obvious first. Also great point about teaching hospitals, I seem to be in mod point drought, so I can't help you out here.
Parent
Re:Get Help Now, Maybe? (Score:5, Insightful)
I was lucky, I lived.
Parent
Re:Get Help Now, Maybe? (Score:5, Interesting)
Parent
Re:Get Help Now, Maybe? (Score:4, Informative)
My boss did get better, it just took him a long time. Patrick should be ready for a very long recovery time with some nasty side effects along the way.
Though I'd take shitty side effects to worm food anyday...
Parent
Re:Get Help Now, Maybe? (Score:4, Informative)
A good portion of these are "post-", i.e., this looks like its easily misdiagnosed/missed.
The common treatment seems to be: 6-12 months of high levels of penicillin/amoxicillin/ceftriaxone plus surgery to get rid of pseudo-tumour growths.
Parent
Re:Get Help Now, Maybe? (Score:4, Insightful)
While almost everything looks normal there, the following white cell counts are (barely) out of the normal range:
A friend who is studying medecine said to me once: Don't you EVER try to do or reaching any conclusion on your own if you have not studied for at least 5 years. I'd like to add: DON'T ASK
Parent
Re:Get Help Now, Maybe? (Score:5, Insightful)
Parent
Re:Get Help Now, Maybe? (Score:5, Informative)
Thats absolutely correct. He may be a brilliant computer programer but he should not try to be his own physician. By his own admission he has already significantly delayed his care trying to treat himself.
The signs and symptoms he describes are consistant with pulmonary actinomycosis but there are also a number of other infections and other conditions that could cause this.
While his own description of 'yellow nodules' is interesting and possibly significant no one has examined any of these nodules and no one has definitively diagnosed him yet.
There is a good reason his doctor is required to consult an ID specialist before hospitalizing him.
He should follow this advice, contact the best physicians he knows, and let them decide what he has and how it should be treated.
If he does turn out to have actinomycosis his prognosis is very good for a complete cure and good recovery. I wish him the best.
Parent
Re:Get Help Now, Maybe? (Score:5, Interesting)
5 years ago, I had the same infection, but of the mouth variety. It was misdiagnosed 3 seperate times; first as strep throat, then as mono, then as a "mono-like virus that will need to run it's course."
By the third visit (8 days after the first) I was running a 103 degree fever, hadn't eaten in 3 days. The swelling in my troat and mouth was so bad I couldn't even swallow water (it came out my nose) and breathing was beginning to be affected. My roommate (and fraternity brother and hockey defense partner) made a HUGE deal at the hospital when they told me to go home and get plenty of rest. I was too delerious to do anything myself. Eventually, they called a specialist that agreed to see me in his office immediately (even though it was 7:30pm on a Friday).
Soon as we got there, he had me diagnosed from thhe sound of my voice: Peritonsilus Abcess. He prepped me immediately for emergency surgery. Most painful thing I ever went through. I'll not bore with the details, but he drained a LOT of puss, granuals, and blood from my mouth.
45min later, I could talk and swallow (still somewhaat painfully). He gave me a perscription for Biaxin and Clindamyacin because he said the bacteria that cause this are one of 2 major types and each is unaffected by the other's medicine. Within 36hr I was almost back to normal. Withing 5 days everything had healed.
I can't imagine it in my lungs, though.
-Ab
Parent
Re:RTFA (Score:4, Insightful)
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.
Parent
Interesting... (Score:4, Funny)
Parent
Re:Get Help Now, Maybe? (Score:5, Funny)
Maybe
Your logic baffles me.
Parent
RTFA please !!! (Score:5, Insightful)
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.
Parent
Re:Get Help Now, Maybe? (Score:5, Insightful)
Good hell. You should try reading the article before you post. Patrick did go to the doctor. In fact, he went to lots of doctors, and they all did precisely the same (wrong) thing. Patrick's research (and Google) was what finally provided the clues that lead to proper diagnosis.
You should definitely consult a doctor, but anyone with a serious medical issue that doesn't take the time to do some personal research is a fool. Doctors have a lot to do, and they don't get paid for research. The average individual with an Internet connection has access to more medical information than even the most well-connected doctors did 10 years ago. In this case there was almost no chance that the average local doctor would have any experience with this sort of infection. Heck, most of the information available on the Net is about postmortem cases where the patient died because the doctor misdiagnosed the illness.
Parent
Re:Get Help Now, Maybe? (Score:5, Insightful)
Remember, 90% of everything is crap. That is especially true of the Internet, where anyone can post information as if it is true. Think of how many times you have gone to a website about something in your area of knowledge, and found it to be misleading or downright false.
Doctors, even long before the internet, have to deal with lots of people who like to self-diagnose, self-medicate, and generally make it hard to do real medicine. Penicillin is almost useless now because people used it improperly (e.g. for the flu, for too short a duration). There are also a lot of hypochondriacs who think they have fatal diseases for every sneeze (especially mothers with their kids). Doctors have a lot of training and experience to know what is likely and how best to deal with it, and having patients tell them what to do doesn't help. Again, think of all the times someone asked you about their computer and didn't listen to your reasonable response. Usually they just want you to agree with their uneducated diagnosis.
That said, there are a lot of uncommon illnesses out there, things that a doctor may see once in their lifetime, if that. If they studied well, they might recognize it. If they really take an interest, they might be able to look it up. If it resembles something common, though, it is likely to be missed. You are the only one really committed to keeping yourself healthy, so you are probably the only one who is really going to research a possible rare illness.
Where does that leave you? I don't know. It is safer to waste your time and annoy your doctor than to ignore what might be a serious condition. But, your rate of return will be low and you just make your doctor more disgruntled (I can't hardly get mine to speak to me) and drive up the cost of healthcare.
My solution is to have several doctors in the family, so that I can talk to them off the clock and actually get them to pay attention to me, but I'm lucky that way.
Parent
Re:Get Help Now, Maybe? (Score:5, Interesting)
Big tip - which would have helped in this case...once you've received some form of treatment, Rx, or anything there are two very important questions to ask: 1) how soon should I start noticing an improvement? 2) how many days should I wait before I don't feel better or feel worse?
Some doctors will volunteer this information to you. But if they don't...
When I went to an ER with an ACL blowout, I had a first-year Resident check it out and respond, "well, all of your external ligaments are tight. Here's some Tylenol-3. If you don't feel better in two weeks, see your doctor." My response to him was, "'Dr.' and I use that term lightly, I knew that before I came in, and I didn't go to medical school. Would you care to go get your Attending or should I start yelling until *everyone* within earshot wants to know what you're doing to your patient(s)?" He brought the Attending back and I told him what had happened - and what his prize student had done. The exchanged looks between Attending & toad told me there'd be some discussions later. After I told the Attending all of my suspicions & why, he asked me what my background was - where I learned what I knew and used the terminology. (I worked as an EMT from 16-21; 18 is the legal minimum but I got special permission because there weren't enough where I lived. I actually got to deliver three babies before I graduated from high school!)
The bottom line is you are responsible for your own health. Otherwise, physicals would be manditory as part of insurance and you'd be required to meet with a trainer at a health club, be checked for nicotine in your system, etc...along with a bunch of other things...As such, you can't give up when things look crazy - he did right to keep pursuing solutions.
I was in a severe car accident almost ten years ago. I have a "permanent headache" - constant pain - my companion with me when I wake up until I go to sleep. Occasionally it wants attention and wakes me up at night. So far, nothing has shown why this occurs but I still try new things on a regular basis. Eventually, something will come along and fix it.
We all choose what defeats us.
Parent
GET HELP NOW OR DIE (Score:5, Informative)
Parent
Open source doctors? (Score:4, Insightful)
Keep a good thought for him with your deity (Score:5, Interesting)
Re:Keep a good thought for him with your deity (Score:5, Insightful)
Even if Patrick is not religious, knowing that many people are keeping him in their thoughts may produce a similar effect.
Parent
Proof (Score:5, Interesting)
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.
I feel for the guy... (Score:4, Insightful)
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.
Re:I feel for the guy... (Score:5, Funny)
Ah, so is that the secret to getting good health care in the US? ;)
Yaz.
Parent
Re:I feel for the guy... (Score:5, Insightful)
The problem isn't only the self-medication. He went to a doctor. Things felt better for a while, before starting to feel worse. Rather than going back to the same doctor, he waited until it was horrible, and went to another ER. Lather, rinse, repeat. If he had gone to his regular doctor, and let the doctor know if/when the initial treatment failed, the doctor could have done more research and looked for less common problems. The point is that it's impossible for your doctor to know immediately what's wrong with you unless it happens to be something that's pretty common. By not giving anybody a chance to hunt down what this really was, he was getting a bunch of different people treating him for what the most likely problem was - but unfortunately for him, it doesn't appear that it was any of those likely things. So he was getting the same ineffective treatment time after time because none of the doctors treating him knew the whole history.
He also doesn't seem to be treating things too rationally when he complains about not being able to be seen within 48 hours, and deciding that the best course of action would be to drive halfway across the country....
Parent
Mod Parent Up! Patient History Is Vital! (Score:5, Insightful)
"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.
Parent
Slashdot, mirrors, and clarifications (Score:4, Informative)
"Now, I'm hoping that this will get seen by a lot of people and that if it hits Slashdot that some kind medical geek will help save my life."
- Mirrors:
http://uml.axpr.net/ [axpr.net]
http://slackware.osuosl.org/slackware-current/PAT
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.
Mayo Clinic (Score:5, Informative)
Re:Mayo Clinic (Score:5, Informative)
In my experience (our family dealt with a rare infectious disease - Kawasaki's - in which I knew more about it than our doctor thanks to the internet), doctors are fascinated by a chance to treat a rare disease that they don't see too often, esp. at a teaching/research hospital. Get going already!
Parent
Hey folks (Score:5, Informative)
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
Re:Hey folks (Score:5, Insightful)
Parent
Treatment Options (Score:5, Informative)
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.
Parent
Important Advice (Score:5, Insightful)
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.
Parent
Similar to Tonsilloliths? (Score:4, Informative)
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?
Strange story (Score:5, Interesting)
Actinomyces species, to name one cause of infection that seems to be relevant to this discussion, causes lung abcesses that lead to spitting of blood and fever and such. It is also associated with immunosuppression, ie in HIV infection or when on organ transplant medication to name a few. In all, no convincing case for an infection.
Lastly, I find this plea for help via the Internet rather odd. One might imagine that a well-educated person like mr. Volkerding should be able to find his way to proper medical care. The consistent failure of several doctors using pretty advanced technology to find any clear abnormality combined with the absence of typical symptoms suggests to me that mr Volkerding may not suffer from any physical abnormality at present.
Re:Strange story (Score:5, Insightful)
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
Parent
Re:Strange story (Score:5, Insightful)
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.
Parent
Re:"if you can, please help" (Score:4, Insightful)
Parent
Re:"if you can, please help" (Score:5, Informative)
-----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
Parent
How To Help: Be an MD. Admit him to a hospital. (Score:5, Informative)
>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.