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!"
Re:"if you can, please help" (Score:5, Informative)
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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
Re:I know wikipedia is hip and all (Score:5, Informative)
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.
Re:I know wikipedia is hip and all (Score:5, Informative)
The first hit is fine [emedicine.com].
Re:More information (Score:1, Informative)
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.
Support Patrick with Penguins (Score:3, Informative)
Go to the ER Right Now (Score:2, Informative)
Helpful tip: If you're feeling like you might die, you just might. Seek immediate medical attention, not advice from /.'ers.
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.
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...
Mayo Clinic (Score:5, Informative)
You could have said it more politely (Score:3, Informative)
And while I'm at it: take the whole course. Don't stop just because your symptoms go away.
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.
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
Info and pics (Score:4, Informative)
Actinomycosis [jhmi.edu]
Good Article (Score:3, Informative)
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.
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.
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?
Re:Treating yourself with antibiotics (Score:5, Informative)
I didn't say it, because I didn't do it. All of the antibiotics I've had were prescribed by qualified physicians who had seen me personally.
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.
Dental Hygiene (Score:3, Informative)
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.
Re:Treating yourself with antibiotics (Score:4, Informative)
Nonetheless, I agree with you in general, you shouldn't be self-prescribing antibiotics (well, unless you're a doctor), especially not those like Cipro.
And taking antibiotics unnecessarily or without taking a full course of them does your body and the rest of the world more harm than good by creating more antibiotic resistant bacteria.
go to a big research hospital (Score:3, Informative)
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!
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.
Valley Fever is common in CA/southwest (Score:2, 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!
Re:Hey folks (Score:4, Informative)
The long term IV anti-biotics are no big deal. They give you a PIC line that you can have for over 6 months, and the pump is in a fanny-pack. Almost no schedule interruption except you have to waterproof your arm in the shower. I've had 3 for various infections over the years and you just deal with them then they're over.
Tickticker
--
Made you look
"GOMER" (Score:2, Informative)
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.
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.
Re:Univ N. Dakota Medical school GO THERE! (Score:4, Informative)
Re:I know wikipedia is hip and all (Score:3, Informative)
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.
Re:Hey folks (Score:2, Informative)
Re:RTFA (Score:3, Informative)
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.
Re:How To Help: Be an MD. Admit him to a hospital. (Score:3, Informative)
A few thoughts on the initial article (Score:2, Informative)
Re:DON'T CLICK ON WIKIPEDIA LINK (Score:3, Informative)
Re:Get Help Now, Maybe? (Score:3, Informative)
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
Re:Strange story (Score:4, Informative)
Re:Treating yourself with antibiotics (Score:4, Informative)
One of the deservedly most-celebrated ID doctors in the world is Ralph Feigin at Baylor/Texas Children's [texaschild...spital.org].
Anyway good luck and thanks for all the Slack! Wouldn't be a programmer today without it!
GET HELP NOW OR DIE (Score:5, Informative)
Penicillin + surgery + Oxygen under pressure (Score:3, Informative)
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!
What I found: (Score:3, Informative)
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.
You need a top specialist with lots of time (Score:3, Informative)
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.
Re:Reminds me of an old Joke (Score:3, Informative)
Oral penicillin generally does not do it. What
is needed is 2 to 6 weeks of IV penicillin G (12 to 24 million units a day), followed by 12 months of V-cillin-K 1g four times a day. Amoxicillin 500mg 3 times a day has me in a holding pattern,
but it's probably not going to do the trick. Rodney has no ability to directly admit me to a hospital without first sending me to an infectious disease MD there who would have to agree with all of this. I have an appointment on Friday.
So basically, he's not asking for a diagnosis, he's asking for an "in" somewhere so he can get the proper treatment quickly. Anyone know an MD that would be willing to make a couple phone calls and say, "Hey. This guy needs treatment. Real soon." (N.B. You can get much better treatment much more quickly if you can get a personal referral, especially if the referral is from a well-know/well-respected/etc. physician.)
Think of it this way; it's not what you know, but who you know.
A friend of mine is a radiologist, but when I needed to see a good dermatologist (re: possible melanoma), he turned a Three. Month. Waiting. List. into an appointment two days later. I'd volunteer this friend, but he's shipboard in a different hemisphere.
Re:Penicillin + surgery + Oxygen under pressure (Score:2, Informative)
After brushing your teeth normally and rinsing, give them the peroxide treatment.
Put the peroxide in a small cup ( like say, a shot glass) so you don't contaminate the whole bottle.
That will nuke any anaerobic bacteria in your mouth and also bubble off any food particles etc. that are stuck in hard to get to places.
The peroxide will break down on contact with debri and plaque to H20 and O2, making lots of foamy oxygen bubbles.
Rinse your brush before dunking it back in the peroxide again.
Don't swallow the peroxide.
Re:this is why i dont use slackware (Score:3, Informative)
Chances are, anyone who would put Slackware on a mission-critical server is quite capable of maintaining it himself while Pat is recovering.
Pat is currently at the Mayo Clinic.... (Score:1, Informative)
I know almost nothing about computers and was told about this website by his wife. Pat is one of my best friends and has been for many many years. I am posting this to let everyone know Pat is currently at the Mayo clinic and is undergoing a full battery of testing. At this point we (his friends and family) dont know anything more than that the doctors have admitted him, run many many tests, and he has an appointment to go over what they have found tomorrow the 19th.I wish I had more to tell you but at this time I don't. I am sure if he gets told hes going to be ok (even if after a long long treatment period) he will soon be posting to let everyone know the good news. If things go the other way(I am not a very religious person, but I am praying for Pat daily) I will try to post the occasional update on his condition for those who are interested.
- His Friend Guy.
using anonymous cause after this situation is over I will probably never post to this again so I've declined to create an account.
Oh, just a few thoughts of mine - for those of you who have tried to post some helpful advice I personally thank you and apreciate your efforts. Its nice to see so many people do what they can to help out a person in need. Thanks again.
-to those of you who have only posted critisisms about what he did before going to the doctor....thanks, your posts helped tons.-sarcasm if you hadnt guessed...freakin losers. Why don't you find something to do other than critisize someone asking for your help, what good does that do?
Feel free to flame me as I am not very computer literate and realy don't care. I just care about my friend and his health.