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!"
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.
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.
As a qualified /. MD I can tell you that this is an oddnstory. Now, where the actinomyces bit comes from is a mystery because his letter doesn't mention it. The complaints he lists are not typical of anything but the consistently normal results of CT/Thorax and lab (the deviations he lists are not significant) suggest that some of it may be more mental than anything else. That said, some complaints can be consistent with a diagnosis of pleuritis/pericarditis or even pulmonary embolism. However, the additional investigations should have uncovered this. An infection is not very likely all considered. Why was nothing cultured? If Volkerding is expectorating, stuff can be cultured. Apparently no such material was available. In extremis, direct puncture of suspicious lesions can provide material for culture or PCR.
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.
----- One learns to itch where one can scratch.
I am curious about his "sulfur granuals" ... reason being that I have had something similar for about 10 years (but I've never had his other symptoms). What I thought they were called were "tonsil stones." That's a random link, but you can just google it and find much more. My tonsil stones look similar to what he has described - white yellowish, less than 1mm, sperical, foul smelling. But I don't have any other symptoms.
-- (Score:i , Imaginary)
I was thinking the same thing. My tonsils were removed in February of 2002, and one of the driving reasons was excessive tonsil stones. I had to use a Water Pik on a regular basis to keep the crypts cleared out. Eventually they just permanently swelled virtually shut, so my ENT agreeded to remove them.
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.
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.
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.
LRC, the best-read libertarian site on the web
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.