Patrick Volkerding Battles Mystery Illness 675
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!"
Keep a good thought for him with your deity (Score:5, Interesting)
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.
Re:Get Help Now, Maybe? (Score:5, Interesting)
Emory (Score:3, Interesting)
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!
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:Get Help Now, Maybe? (Score:3, Interesting)
And Encourage Him To Floss - No, Seriously (Score:3, Interesting)
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 [webmd.com] including heart disease and stroke.
This writeup [nih.gov] 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....
Re:Get Help Now, Maybe? (Score:4, Interesting)
I am definitely not a doctor, but the symptoms he describes sounds familiar. The tonsilloliths are easily rectified, and I don't know of any other medical condition that would mimick this. The chest pains sound like pleruisy to me. I had this once in college -- freaked the living daylights out of me. My roommates took me to the ER where I was on oxygen and an EKG machine for a while. The doctor said that the symptoms are similar to a heart attack from the perspective of an untrained patient. Since the infection of the pleura is viral, there's really nothing that they can do other than prescribe pain killers and a heating pad.
The big thing that he needs to stop doing is suggesting to doctors what he has. Walking into the ER and telling them that you think you are suffering from an infection acquired from "lung plaque", while potentially correct, will just brand you a loon. Anytime I go to the doctor I do research into my symptoms, but I always tell the truth and let the expert decide. While you may have symptoms for months or years, you are still far from knowledgeable about medical conditions. There is a reason that doctors are in their 30s before they're allowed to practice medicine on the unsuspecting population.
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
Re:Go to the ER Right Now (Score:2, Interesting)
I just wrote Patrick (Score:2, Interesting)
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!
Medical practices and malpractices (Score:4, Interesting)
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.
Re:A link for actinomyces/actinomycosis (Score:3, Interesting)
I AM NOT A DOCTOR. THIS IS NOT A MEDICAL ADVICE. CONSULT YOUR PHYSICIAN FOR MEDICAL HELP.
Re:Strange story (Score:2, Interesting)
Doctors, and programmers, also have a tendency to live in their own little world while disregarding the real needs or desires of others(often programmers worse than doctors, thus Windows as well as the pitiful situation of UI today, one of my pet peeves...
Remember that people don't want to be sick (usually) and that you're best bet is to trust them that they're trying to help you to help them. Hurrah for Patrick. I applaud you and would do the same in terms of jumping around and researching if one of my family or myself were at stake. May our Father in Heaven bless you and my prayers are with you.
PS - Go to a DO ASAP rather than any more MDs.
You CAN'T hack your own body (Score:3, Interesting)
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 [spectroscopynow.com] by imaging C,N and O on top of H20. Medical error is a leading cause of death [nap.edu]. 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 [nih.gov] (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 [apa.org] is an intensely applicable article to everyone.
I recently had a relative who died [slashdot.org]. 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).
look after your system (Score:2, Interesting)
one of the surest signs you have to do something about it. It is a problem that is stopping you what you normally can do.
'... Being an ex-smoker, worries of lung cancer were starting to consume my thoughtsSo you realise your mortal and you like living. Nothing wrong there.
Now for the sermon: get someone to find out what is wrong. don't stop until your satisfied. get another practioner if they give you the bums rush or cant be bothered to solve your problem.
repeat after me programmers, hackers: Look after the health of your system and yourself. I dont want to read another opensource contributor obituary [perlmonks.org].
Well Patrick - get yourself well. write it up and I'll promise to get a full commercial version of slack instead of the cheapscate versions I usually get :)
Re:Mayo Clinic (Score:3, Interesting)
This is how I got there: I asked my doctor in Berkeley for a paper by the leading researcher on what I was suffering. I could also have found this at a library, or perhaps today on the web (not then), but the doctor did the work for me. The paper was by the doctor at Mayo. I called up and asked if he'd see me, and he agreed. It wasn't a lot of trouble to fly there. It was more trouble getting my insurance to pay, I think at the time I got 80% paid for and perhaps today I'd get less or nothing. But it was worth it. I got a lot of testing an an evaluation by the most experienced physician in the field. He gave me the benefit of research that wouldn't be published for another year. He convinced my own doctor to change his treatement not only for me but for his other patients with the same disorder.
I shiver to think of what happens to people who have a bit less money, and who are tied to their desks at work all day. They would not be able to drive their own health care as I have.
Bruce
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.
i had a similar problem (Score:3, Interesting)
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.
Volkerding's compromised immune system...? (Score:2, Interesting)
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!
Re:I know wikipedia is hip and all (Score:3, Interesting)
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
Re:Hey folks (Score:2, Interesting)
Offtopic. Doesn't that phrase sound strange when you apply it to a person, yet sounds quite correct when applied to software? You'd actually be checking out a younger version of yourself, not an older one. For some reason we measure the "age" of software backwards from today while we measure the age of a living thing forwards from its birth. Yet software is a living thing, in a way, constantly growing and maturing. Would it not make sense to say that we check out a younger version of software from CVS? We still celebrate software anniversaries and say that Linux is X years old, for instance.
English is odd, sometimes.
Re:Penicillin + surgery + Oxygen under pressure (Score:2, Interesting)
Re:Oxygen (Score:1, Interesting)
(Anonymous, just because)
I can second this. I had what I think were "mild" cases of panic attacks before, several years ago. A few months ago, I had a "real" one. It was out of nowhere, on my way home from work. All of a sudden, I couldn't swallow. I couldn't breathe. I felt like I was going to pass out. Luckily, I was close to home. Once I got there, I laid on the couch and just hoped it would go away. It didn't. I was absolutely certain I was going to die.
I suspected what it was, but drove myself to the urgent care center around the corner anyway. Apart from my blood pressue being 200/120, I was fine. It hasn't happened since, and thankfully from what I read, many people have just one and never have one again. I sure hope I don't, it was the scariest experience of my life.
Dont want to sound like an ass, but... (Score:3, Interesting)
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.
I had the same thing (Score:3, Interesting)
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.
almost sounds like hanta virus (Score:3, Interesting)
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.