Slashdot Mirror
Patrick Volkerding Battles Mystery Illness
sethadam1 writes "Calling all Slashdoctors! Pat Volkerding, maintainer of Slackware Linux, needs your help. This morning, he posted his very detailed account (mirror) of his battle with Actinomyces here on the Slackware FTP server. Patrick has given his blood, sweat, and tears to the open source community for years in Slackware, one of the oldest surviving Linux distributions. If you can, please help!"
At least he has a sense of humor.
That's the least all of us can do that believe in such things. He's done great work. Without his Slackware books and releases, I'd probably not be involved with Linux.
"Eve of Destruction", it's not just for old hippies anymore...
Actions like this (trying to help another) are what really make a community. The fact that people pull together to help another person, whom they probably don't know, proves incorrect those who criticize this community as many takers feeding off of a few givers.
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.
Slashdot Syndrome: the sudden, extreme urge to correct someone in order to validate one's self.
I was lucky, I lived.
As per the dude's post, googling for sulfur lung granules works fine.
The first hit is fine.
There are no trails. There are no trees out here.
>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.
Something similar happened to me when I had an asthma attack in the middle of a case of pneumonia. I ended up sending my brother some IMs via AIM telling him to get help for me. Even if I were coherent enough to talk on the phone, my lungs were at less than 10% of normal capacity, and I couldn't make any sounds anyway. It's a strange feeling to know that something from AOL actually saved my life.
Being in Fargo, he's only 5 1/2 hours from Rochester, MN, where the Mayo Clinic is. I'm not sure if its warranted, but I've known a few people who have gone there under similar circumstances when all else has failed.
I'd be willing to contribute money to a donation fund too - if it was run by someone reputable (I wouldn't trust some random person to get the money to where it needs to go).
/. could take up a collection?
Maybe
Your logic baffles me.
Ah, so is that the secret to getting good health care in the US? ;)
Yaz.
From a doctor:
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.
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
Although he doesn't come out and say it, it appears that he was treating himself with antibiotics.
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.
The best place in the world to go if you have a weird problem is a universityhospital for a medical school. There you will find all sorts of specialists, who colect al the "zebra" cases from the surrounding 200 miles and treat them, 'cause no one else knows how to. Almost every medical school I know will take any pt, reguadless of insurance, on an emergency basis, and run the appropriate tests.
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.
..........FULL STOP.
Not to be rude but in your last sentence you completely summed up the problems I have had with doctors and what is wrong with doctors, which is "They are just as egotystical as programmers". I'll never understand how doctors think they actually understand the human body, they always think they are right... it drives me nuts. If I say it hurts .. it really hurst! it's not mental!
... The latest one in my shitty annoying illnesesses is a herniated Disk in my back between L1-L2 ... Since the pain was in my back and front, the doctors (not just one, but many) all assumed I had intestinal problems, or kidney problems ... no one wanted to listen to me that it hurt more depending on the way I moved until they stuck enough poles up my ass and could not find a thing and did an MRI on my Lumbar spine. This took (9 months!)
...
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
My Web Site - www.ocean-liners.com
RTFA! He clearly states... just kidding.
I sincerely hope you get better, and I wish you have a speedy recovery.
All the best.
-Derek
Treat me like a marketing stat, and I'll treat your movie like a series of ones and zeros
Agreed.
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
Nothing fails quite like prayer.
Well, yes... but within reason.
Remember, 90% of everything is crap. That is especially true of the Internet, where anyone can post information as if it is true. Think of how many times you have gone to a website about something in your area of knowledge, and found it to be misleading or downright false.
Doctors, even long before the internet, have to deal with lots of people who like to self-diagnose, self-medicate, and generally make it hard to do real medicine. Penicillin is almost useless now because people used it improperly (e.g. for the flu, for too short a duration). There are also a lot of hypochondriacs who think they have fatal diseases for every sneeze (especially mothers with their kids). Doctors have a lot of training and experience to know what is likely and how best to deal with it, and having patients tell them what to do doesn't help. Again, think of all the times someone asked you about their computer and didn't listen to your reasonable response. Usually they just want you to agree with their uneducated diagnosis.
That said, there are a lot of uncommon illnesses out there, things that a doctor may see once in their lifetime, if that. If they studied well, they might recognize it. If they really take an interest, they might be able to look it up. If it resembles something common, though, it is likely to be missed. You are the only one really committed to keeping yourself healthy, so you are probably the only one who is really going to research a possible rare illness.
Where does that leave you? I don't know. It is safer to waste your time and annoy your doctor than to ignore what might be a serious condition. But, your rate of return will be low and you just make your doctor more disgruntled (I can't hardly get mine to speak to me) and drive up the cost of healthcare.
My solution is to have several doctors in the family, so that I can talk to them off the clock and actually get them to pay attention to me, but I'm lucky that way.
He went to the wrong doctors. When dealing with a bacterial infection, you need an INFECTIOUS DISEASE SPECIALIST. You can find them associated with large medical centers. Bacteria are hard to defeat, they can be tolerant of antibiotics, so a multi-drug therapy has to be used. Bacteria can encyst themselves when exposed to a hostile environment, to reappear later. All cysts must be drained. This can be minor surgery when they are in muscles, or major surgery when involving a major organ (like a lung). This isn't to be played around with, they can easily kill. Most doctors don't have the knowledge to treat them. Get to an INFECTIOUS DISEASE SPECIALIST immediately! There aren't that many of them, and most are associated with large institutions or university teaching hospitals. Get on it now, your life is in jeopardy.
One of the biggest problems facing doctors (re: diagnosing problems) today are their patients. Patients tell the doctor what they think is relevant, leaving out what could be vital information presuming it's not related because it seems insignificant [to them]. My policy is to tell them everything and let them sort out what is|not important. Then again, I've got a physician & his partner who are pretty holistic in their outlook and aren't willing to shove a pill bottle in your hand and point you towards the door.
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.