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!"
"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
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 happ
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.
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.
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.
Re:Univ N. Dakota Medical school GO THERE! (Score:4, Informative)
Re:Univ N. Dakota Medical school GO THERE! (Score:4, Funny)
Re:Get Help Now, Maybe? (Score:5, Insightful)
I was lucky, I lived.
Re:Get Help Now, Maybe? (Score:5, Interesting)
Oxygen (Score:3, Insightful)
While I can appreciate the problem he's having, I also see several signs of something else... Panic Attacks. I have relatives who've gone to ER over them and I've had some symptoms myself at stressful times. Until you experience it, it's hard to understand/believe. To me (and I am not a doctor) this guy seems to need a small dose of valium followed by continued treatment for the infection - or whatever his doctors agree it is.
BTW, Xanax can also help take the e
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 an
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...
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.
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
Re:Get Help Now, Maybe? (Score:5, Insightful)
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.
Re:Get Help Now, Maybe? (Score:4, Insightful)
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? (Score:3, Interesting)
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: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.
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
Interesting... (Score:4, Funny)
Re:Go to the ER Right Now (Score:4, Insightful)
ER tech: "Hello, what's your emergency?"
Pat: "Well, I've been feeling kind of icky the last few years, with some pain here and there..."
ER tech: "Uhhh... take two of these and call me in the morning. And stay out of the way, we've got people with real problems to treat."
Didn't (R)ead (T)he (F)riendly (A)rticle, did you? He's been to the ER of several different hospitals maybe a dozen times or more in the last couple of years. ERs are for compound fractures, bullet wounds, heart attacks or multiple lacerations. Overt, obvious stuff. If they can't find anything "wrong", they give you some antibiotics and/or pain medication and tell you to go home and sleep it off. That's what they're there for, to deal with general emergencies.
I doubt even the ERs at the largest hospitals will have people knowledgeable enough to diagnose something like this properly and send him to the specialist he needs to see. I would hope they do, but I'm a realist so I doubt it. Can they pull a piece of my windshield out of my left ventricle and patch the hole? There's a good possibility. Can they treat this disease? So far, the ERs and doctors at several hospitals have failed to even identify it. Scary, but typical. I'm not knocking ERs in general. What they do, they do well, and 99 out of 100 ER patients will thank them for that.
Pat needs a specialist that knows about this specific disease, or better yet knows how to quickly figure out which specific disease he has, because right now it sounds like he and his doctor are still just guessing based on symptoms. They haven't run the types of tests that can tell you exactly what you're dealing with. They could still be treating for the wrong bacterium or doing something else that could make his time run out, literally.
What the
Just going to the ER, that's not going to help. He's not actually dying right now, he's feeling better (he says). Until he does actually have an attack of some sort the ER people will have no clue what to do. Help him figure out how to get past the ER and who to connect with--as quickly as possible--to get this thing cured, whatever it is. As others have said, Friday could easily be too late. Knock on wood.
Re:Get Help Now, Maybe? (Score:5, Funny)
Maybe
Your logic baffles me.
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.
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.
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.
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.
Re:Get Help Now, Maybe? (Score:3, Insightful)
By the way, I am a doctor and an infectious disease specialist.
GET HELP NOW OR DIE (Score:5, Informative)
Re:No "Maybe" about it. (Score:3, Insightful)
However, senior doctors rarely put in that kind of time, and had zero reluctance to putting the junior doctors through that kind of stress. It became a sort of initiation rite. The health of the patients is not a factor, or they'd hire more junior doctors. There's no shortage of people who are interested. Supply vastly exceeds demand.
You say
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:3, Insightful)
And, yeah, I'm praying for Patrick...
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 bru
Same here (Score:3, Insightful)
Not a religious man, but I hope he's OK, and I'm glad the community is involved and maybe can help.
No expert myself, but it sounds like he needs to drive up to Mayo, kick over the triage desk, and refuse to leave until they cut the red tape for him. His descriptions of his problems make me think nobody should be making this guy wait "till Friday" for anything.
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.
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:Proof (Score:3, Insightful)
Its unfortunate in a lot of ways, but slashdot cant be the "help me" spot on the internet for the open-source coders out there. If i submitted something like this for myself, chances are I'd get rejected because "who the hell is e
This just in from Redmond .... (Score:3, Funny)
Not only is Linux less secure than Windows for computer bourne infectants, but recent studies have shown that users who have extended exposure to the operating system come down with other human based diseases at a rate greater than 100% greater than Windows users.
In related news, SCO guarantees safety from infection by end users who pay their modest licensing fee.
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.
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....
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.
Treating yourself with antibiotics (Score:3, Insightful)
This is astonishing, and I'd go as far to say this is stupid, and even immoral.
Stupid, because you could create a drug resistant strain of whatever it is and kill yourself. Who know, he probably already has. Immoral, because that drug resistant strain of whatever is now a threat to everyone else if they catch it.
Folks, don't be treating yourself with antibiotics. Unless you're a doctor, you don't know what you're doing.
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: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.
RTFA (Score:5, Funny)
RTFA! He clearly states... just kidding.
I sincerely hope you get better, and I wish you have a speedy recovery.
All the best.
-Derek
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!
Re:Treating yourself with antibiotics (Score:3, Insightful)
Pat, sounds like you have been doing the right things. You have seeked the help of professionals. Keep that up and be very persistent. In the mean time, please get lots of sleep and maintain your intake of fluids, vitamins, and other nutritious foods. This is essential for keeping up your immune system (especially the sleep). Doctors can medicate you, but do what yo
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.
Re:Treating yourself with antibiotics (Score:3, Insightful)
If a computer virus kills a system, you can throw in the restore disk/tape and recover. If a physical bacteria or virus kills a person, there's not a damn thing anyone can do.
Support Patrick with Penguins (Score:3, Informative)
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.
He should be in a hospital (Score:3)
Disclaimer: I am not a doctor and this is not medical advise.
Cross the border (Score:3, Insightful)
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!
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 sufferin
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:3, Funny)
I've got plenty of penicilin shots you can have. Just ignore the equine lable.
Re:Hey folks (Score:5, Insightful)
Re:Hey folks (Score:4, Insightful)
You may be starting to feel better now, but don't sit around waiting for a 'next time'. Visit your doctor, tell them everything you can and make sure they listen. (Canadian here, occasionally when doctors are in a rush we get 'one foot out the door syndrome' where they are more focused on all the patients they have left to see today instead of the problem at hand.)
Speaking from a point of view that I have had family members suffer very close calls... sometimes when 'next time' comes around, its already too late.
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
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:Treatment Options (Score:3, Insightful)
If not, please think about doing so.
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.
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.
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?
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: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
Re:Strange story (Score:4, Informative)
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.
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.
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!
Knowledge can be hazardous to your health (Score:4, Insightful)
People who use their computers to find information about their chronic disease often wind up in worse condition than if they had listened to their doctor, according to a University College London review of studies on Internet health. Using interactive computer tools does improve the medical knowledge of people with diabetes, asthma or other chronic conditions, and does provide them with positive feelings of social support, according to researchers reviewing 28 randomized controlled trials involving 4,042 participants. But there was no evidence that cyber-medicine helps people change their behavior and startling evidence that it may leave them in worse health.
HMOs from an outsider.... (Score:4, Insightful)
HMOs don't work!
How can't you put a company, whose bottom line is profit and cost reduction, in charge of peoples health...it does not work...every day you hear more stories about it not working.
SO FOR CRYING OUT LOUD...GET MAD!!!!!!!!!
any one of you could be in a similar situation...and then it will be too late...make some noise that you want the system changed...get your friends to make noise...hell, do something radical...but don't allow health care to become a right of the wealthy...because guess what, if you get sick, you won't be able to work...and you won't be too wealthy then...and you'll have to do whatever the HMOs tell you to because you won't be able to take care of things yourself.
HMOs have it in the bag, because the only time you'll dispute their position, is when you have no bargaining power...you don't like their decision..they can quite happily say "ok, well, how about you die then"...I'm pretty sure your bargaining power is screwed at that point...for god sake Americans...dispute it now, while you're still in a state too.
Health is a right, not a comodity. This will not get better by itself...and for those about to argue that free market forces will sort it all out...it's suprising how little shopping around one does when they're hooked up to a life support machine.
So for god sake...MAKE SOME NOISE...CHANGE THE SYSTEM...before you don't have a chance to.
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.
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).
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.
Re:"if you can, please help" (Score:4, Insightful)
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
Re:"if you can, please help" (Score:3, Insightful)
Re:"if you can, please help" (Score:3, Insightful)
Not all of it, no. But it doesn't matter. If the ER he's gone to doesn't admit him and he thinks they're wrong, he needs to go to the ER of a hospital where they're not going to brush him off if he's not a run-of-the-mill disease. And if a place like that doesn't exist in Podunk North Dakota, he needs to go to a real hospital.
I don't know any doctors who would implicitly trust someone's internet self-diagnosis.
Surely someone from the hordes of Ximian or other people in Boston can spot
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.
Re:How To Help: Be an MD. Admit him to a hospital. (Score:3, Informative)
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:3, Informative)
I strongly suggest taking acidophilus pills or similar while on any antibiotic to ensure it doesn't screw up your
Re:I know wikipedia is hip and all (Score:5, Informative)
The first hit is fine [emedicine.com].
Re:I know wikipedia is hip and all (Score:3, Interesting)
Inaccurate. If it is impossible to make a good diagnosis of a clearly bacterial problem, for whatever reason, then throwing random antibiotics at it until it goes away is absolutely a superior treatment than one frequent alternative (dying of it) and is almost always superior to another alternative (major invasive bi
Info and pics (Score:4, Informative)
Actinomycosis [jhmi.edu]
This is Slackware! (Score:5, Funny)
apt-get update
apt-get dist-upgrade
and call me in the morning"
That might work for one of the Debian developers, but not here. Pat's doctor has to configure him cell by cell.
Re:The problem in a nutshell (Score:3, Insightful)
Re:Let's all learn from Patrick (Score:3, Insightful)
As far as google knowing more than a doctor... WTF c
Re:DON'T CLICK ON WIKIPEDIA LINK (Score:3, Informative)
Re:A link for actinomyces/actinomycosis (Score:3, Interesting)