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!"

Comments

Get Help Now, Maybe?

[the_mad_poster]

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?

[notthepainter]

From the article, it isn't clear if the infection is in his lungs or not. If it is, he is also likely not getting enough oxygen to the brain. I should know. I had a pulmonary embolism a few years back. I almost died. The day I was admitted to the hospital I emailed my wife telling her to come home and take me there, I didn't dial 911. Why? My brain was starting to shutdown. I realized this years later when reading "Into Thin Air." I was essentially above 28,000 on Everest without oxygen. I don't know Patrick, but I hope someone who does can convince him, on the phone, that he should not necessarily be making decisions right now, he may not be in the space to. It does sound like he needs to be admitted.

I was lucky, I lived.

Re:Get Help Now, Maybe?

[Jason Earl]

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.

Re:Get Help Now, Maybe?

[johansalk]

From another doctor:

I was horrified to read that in the past he self-medicated with a 60 day course of antibiotics that he acquired through a guy his parents knew. Just the recipe for growing a superbug!

I was further horrified to read that now he only wants people to call him if they can get him high-dose antibiotics. He simply needs to see a specialist for specific, directed therapy it may well involve antibiotics, but it will be a precise type of antibiotic, arrived at by expert knowledge and a culture of the organism they would get from his sputum.

I doubt that he would've gotten an infection from the use of an electric toothbrush. I personally think the clue, if it's a chronic respiratory infection indeed, would his "annual camping trip".

To American slashdotters : this is what you get when you have 45 million uninsured Americans, and yet your nation votes against a candidate that promised universal health coverage in favor of another who chose to limit stem-cell research on religious grounds.

Re:Get Help Now, Maybe?

[Anonymous Coward]

Well, yes... but within reason.

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.

Re:Get Help Now, Maybe?

[ajs]

It is important to note for all of the "don't go to Slashdot for medical advice" shouters, that Patrick HAS gone down the medical community route. He's asking for additional input and anyone who can help his doctor grease the treatment skids. This is a *good thing*, and it's just too bad that everyone doesn't have access to the Slashdot pulpit for such dire needs (e.g. when a friend of mine almost lost a leg over a mystery infection).

I feel for the guy...

[handorf]

But self-medicating like he did with the Cipro is part of the problem with medical care in this country.

If you have a multi-year problem, go do the doctor! Do what they tell you! DON'T think you know more than them. Doing research on your own is one thing (good-on-ya there) but antibiotics are not toys!

Hope you get better, though. /waiting for the superbug

Re:I feel for the guy...

[nojomofo]

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....

Re:Keep a good thought for him with your deity

[eln]

Superstitious or not, to a religious person, the knowledge that many people are "praying for them" can lead to a significant positive placebo effect.

Even if Patrick is not religious, knowing that many people are keeping him in their thoughts may produce a similar effect.

Re:Hey folks

[Minwee]

Take care of yourself. Don't mess around with your health. Remember that you can't check out an older version of yourself from CVS if things go wrong.

Mod Parent Up! Patient History Is Vital!

[MooseByte]

"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.

Re:Strange story

[Hawkeye477]

Not to be rude but in your last sentence you completely summed up the problems I have had with doctors and what is wrong with doctors, which is "They are just as egotystical as programmers". I'll never understand how doctors think they actually understand the human body, they always think they are right... it drives me nuts. If I say it hurts .. it really hurst! it's not mental!

A perfect examples of my last run in with dr is... I'm 25 years old with the problems of a 50 year old and everytime a new one hits me the doctors take forever to believe me and then I usually end up having to figure out what I have and force it down there throats until they come to the same conclusion themselves ... The latest one in my shitty annoying illnesesses is a herniated Disk in my back between L1-L2 ... Since the pain was in my back and front, the doctors (not just one, but many) all assumed I had intestinal problems, or kidney problems ... no one wanted to listen to me that it hurt more depending on the way I moved until they stuck enough poles up my ass and could not find a thing and did an MRI on my Lumbar spine. This took (9 months!)

One bit of advice for Doctors (and Programmers). STOP BEING SO DAMN EGOTYSTICAL! computers and the human body are very very complicated machines, u ain't always gonna be right and shoudl look at all the syptoms of the problem and LISTEN to the patients (or users)...

SO that is my little rant as I sit here high on pain killers trying ot make the pain go away from my screwed up disc ...

RTFA please !!!

[ArcticCelt]

Please people STOP COMMENTING WITHOUT RTFA!!!

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.

Important Advice

[Featureless]

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.

Re:Strange story

[harvardian]

I agree with other responses to this post. You sound all too like many doctors I've come across. Rather than listen sympathetically and try to find an honest answer, you jump to the conclusion that the patient's problem is in his/her head.

I've personally never had a serious disagreement with a physician, but my girlfriend spent the last three years (!) getting a proper diagnosis. The first two doctors told her that everything was in her head and didn't do any serious testing. Crying and frustrated by the opinions of doctors like yourself, she decided they were right and decided to "deal" with the problem herself.

A year later, the problem continued unabated, and she decided (at my pushing) to see another doctor, despite how scared she was to be told that she was a mental case again.

To make a long story short, they found that her amenorrhea (she doesn't have her period) and extreme hunger weren't caused by a mental illness or an eating disorder as previously believed (we both knew neither was possible), but she rather has polycystic ovaries, insulin intolerance, and extremely low leptin levels (as well as having the strange female hormone levels that go along with all that). She even took part in a clinical trial for active women with problems like these where she took leptin, and it was like night and day (FYI, she's not overweight but rather very active...apparently both can cause similar problems, but I don't know much about it). So it's pretty clear that none of this was in her head.

And my father was a doctor, FYI, so it's not like I have a problem with them. He agreed with me (before he passed away) that doctors are all too often dismissive of people's problems.

Also, in regard to "If Volkerding is expectorating, stuff can be cultured" -- if you took him at his word (which I've noted is difficult for you to do), then you'd know that he has retrieved what he thinks is a sulfur nugget from his throat, and he'll probably get it analyzed when he sees the specialist. I don't know why you even mention culturing, he never said what he retrieved from his throat was organic.