An Update on Patrick Volkerding 518
Noryungi writes "Patrick Volkerding, the maintainer of Slackware Linux has posted an update on his health problems on the ChangeLog of Slackware-Current. Unfortunately, it seems his health is getting worse and not better... Again, if you know some specialist in viral infections, contact Patrick ASAP. Hang in there, Pat!" Our original story.
Text - save the slackware server (Score:0, Informative)
"Netcraft does not yet confirm it"
Hi again, everyone. I wish I could report that I'm doing great
and will be back to full health soon, but I can't. Possibly due to
the antibiotics I've already taken, the doctors I've seen have been
unable to find signs of infection, and my blood ESR is normal.
Nevertheless, the signs of complications from an infection are quite
clear. I've had a number of pulmonary "pops" that are either burst
lung abscesses or blebs, and things have spread in a bad way. A
thickening of my pleura has been noted, as well as pericarditis.
Most disturbing of all, I have developed mitral valve prolapse and
regurgitation. I've had a fever and soaking night sweats. I can't
stand for too long without getting faint. Lately I've been spending
a lot of my time on the floor. I have no history of heart problems
and when I got the first chest pains (crushing ones) I went to the
ER immediately. This was on 11/10. They found nothing wrong and
sent me away. The next day I saw an internal medicine MD who gave me
a complete exam including carefully listening for heart problems, and
found nothing wrong. The pain continued, and by the time I got to
the Mayo I had heart trouble so obvious that nobody has failed to
recognize it since. However, it's been a problem getting anyone to
consider that this is a new problem. Most of the people I've seen
think that they are the first to notice it and that everyone before
them must have missed it, and that I've certainly had it my whole life.
But having recently had a major infection and fever and developing a
new murmur and chest pains I'd think it would be only prudent to
treat this as complicated infective endocarditis. I've been to
another different ER with more crushing chest pains since then and
have begged for a needle biopsy to check the plural fluid for empyema,
but nobody will do this diagnostic either. I've verified online that
it's not only possible to have a normal ESR and infective endocarditis
but that patients that present that way have a statistically worse
outcome (maybe because nobody will treat it). Anyway, I'm still
hoping to get the treatment that I'm sure I need, but if there's an
insistance on clinical proof first and treatment second, the proof
might be found at autopsy time. Oh, I've also finally flunked an ECG
after several normal ones and at least pericarditis is now proven.
Now, to clear up a few things. In my initial report I mistakenly
reported that I'd taken 60 days of Cipro for a pulmonary infection.
(hey, I was up late freaking out a bit) This might not have been
for as long a period of time, and it was actually to treat a
relapse of prostatitis (and yes, that does require a long course).
As for those who say I should stop trying to diagnose myself: I am
trying to get doctors to diagnose this ongoing problem. Meanwhile,
it is only wise to try to figure out what's going on myself, and to
get input from as many sources as I possibly can. After all,
sometimes the cavalry just isn't coming. Or as the old (I think
Russian) proverb says: "Pray to God, but keep rowing to shore."
I built a few updates to get my mind on happier things. Maybe I'll
have time to look at the kernel sometime soon, too, but getting my
health back remains the A-number-1 priority here.
kde/koffice-1.3.5-i486-1.tgz: Upgraded to koffice-1.3.5.
kdei/koffice*.tgz: Upgraded to koffice-i18n-1.3.5.
Also, Bruno H Collovini and Piter Punk in Brazil have been helping
to build security updates for Slackware while I'm (mostly) out of
commission. They've helped with Slackware for many years and I
trust and authorize their patches. These can be found here:
http://www.slackware.org.br/~patrick/WORKGUS/
Thanks to everyone who has offered to help, and sent get well soon
and other kind emails. I really appreciate it. I'm also grateful
for many of the suggestio
Re:Plan Of Action (Score:4, Informative)
He found the Oregano oil ... (Score:4, Informative)
At least he found the Oregano oil
Hope Patrick is feeling better soon - cardiac stuff is scary++ and the things he describes are going to cause him long term troubles even if he does recover
Re:The problem with Patrick... (Score:4, Informative)
Re:Jeez... (Score:4, Informative)
About 15 years back a friend had psittacosis [emedicine.com] that was so bad they had him on IV antibiotics for a year. It's pretty rare in humans and usually not so severe.
It took him forever to find a doc who recognized what he had.
I'm no doc, but common sense would suggest that if symptoms suggest an infectious agent, sampling and investigation of the site of infection would be in order.
As for docs, I had one who looked at an x-ray of my hand in which three bones were clearly broken with a good 3/8 inch between the broken ends and tell me that my hand was fine! Even the x-ray tech didn't see the breaks. It was a surreal experience. Ditto for my moms fractured pelvis (she fell through a rotten section of floor in a building we we're thinking of buying). X-ray tech and doctor did not see the fracture until I pointed it out on the film. They were going to send her home with some pain killers!
Last example was bicep torn completely off the bone in my forearm. Pretty obvious something was wrong. Bicep all bunched up near my shoulder. It was the THIRD doctor who looked at it that finally agreed something was wrong (although he still misdiagnosed). Finally found a good orthpedist who had seen the condition (pretty unusual) before.
What scares me.. (Score:3, Informative)
Surely they should have him in until they get to the bottom of this! Our NHS may be in pretty rough shape but you if staggered into hospital with some of the symptoms he has been having, he'd be in a bed and getting looked at and wouldn't be allowed to leave until he was fixed up, or at least they had identified the problem and knew how dangerous it was and what they needed to do to fix it!
Scary, really scary. Good luck Patrick.
Re:Sad, but he's mostly brought this on himself. (Score:2, Informative)
http://slashdot.org/comments.pl?sid=129902&cid=108 33936 [slashdot.org]
FOR THE LAST TIME! HE DID NOT SELF-MEDICATED! (Score:4, Informative)
As you can read here [slashdot.org] in his last post on
Nutrients and Antibiotics... (Score:2, Informative)
Re:Bacterial, not viral (Score:5, Informative)
The only time we don't report out normal mouth bacteria is when we are working with a specimen from, uh, the mouth.
Re:Best of luck (Score:5, Informative)
I assumed that this was posted (like everything else) on slashdot to generate discussion and comments. I did so. If you don't like my opinion, you can set me as your foe and choose to ignore my future posts.
If you were to reread my post, I wasn't giving advice. I was just giving my opinion of his situation.
Re:The problem with Patrick... (Score:5, Informative)
Exactly.
I'm also getting some people who are telling me that this whole issue was caused by antibiotics that weakened my immunity. However, from around 2/2003 to 11/2004, I did not take _any_ antibiotics. When I started to get really sick in October I hadn't had antibiotics in well over a year. I had only two short courses of antibiotics in 2002 and 2003 for what seemed to be bronchitis (though the docs never verified if it was bacterial or viral but just said, "here, eat some Cipro).
One more time:
I have not been "self-medicating".
I have never, ever, taken antibiotics until I felt better and then stopped them, allowing a resistant relapse to occur. I have, however, been given an insufficient initial course of antibiotics for prostatitis in 2001 (which is what then required a long course of Cipro).
For those who are making fun of my supposedly improper use of medical terms, or wrong context, or whatever: this is not my field of expertise and we both know it. I don't hassle people trying to get computer help from me when they use incorrect jargon. Maybe BMDFH should be a new acronym.
On the hypochondria theory: anyone who has ever spent any significant time with me in person would shoot that one down in an instant. The last two months have been highly unusual for me, and I've never been inclined to think that I'm sick, to worry about that, or to go see doctors.
I hate being a pincushion.
Oh, and I know that seeing a new doctor causes a reinvent the wheel syndrome, and that when you tell them how many other doctors you've seen recently they tend to suspect you're crazy rather than physically ill. I know this all too well. However, if the antibiotics I've taken are suppressing the usual clinical evidence then I'm in a bit of a catch-22. As sick as I've been, the idea of using my body as a petri dish doesn't appeal to me much, comprende? Plus, some of these bugs (especially anerobes) simply don't culture well, and they won't go for the slam-dunk with a needle biopsy. At some point you'd think there would be a time for proactive treatment. Like in, say, a patient with no history of heart trouble who has complained of a recent fever and infection who has developed a new mitral valve prolapse.
I guess that's about it for now. I know some of you think I'm an behaving like an idiot, or whatever. I only hope that those of you who feel that way never find yourselves in my shoes.
To everyone who has offered well-wishes, thank you!
Best regards to
Pat
Re:Best of luck (Score:3, Informative)
I have gone through this several times with my mother, who has had colon cancer for about 4 years now. In her case, the initial diagnosis was not the problem, that was crystal clear. But when it came to treatment - yes, we did LOTS of doctor shopping and had multiple independent doctors (who were not active clinicians anymore) working as our advisors. Why? Because oncology isn't an exact science and lots of opinions differed substantially. And we are talking about the best doctors at the topmost institutions (we live in New York, so Sloan-Kettering, New York Hospital, Columbia-Presyterian, etc., and eventually in other cities as well).
At the time the opinion of several top-notch oncologists (including Lenny Saltz at Sloan-Kettering) was that she had less than a year to live. She's still around and doing well 4 years later, because we eventually got a surgical consult with a supposedly "fringe" surgical oncologist in Washington DC, Dr. Paul Sugarbaker. His work seems to be vaguely disrespected in the broader medical community because he selects patients based on criteria that they don't like - namely that they have to be young enough and healthy enough to survive and recover from extensive surgery.
Then there was the more recent event where a prominent surgeon in New York operated on her again and insisted that a new tumor she had was a primary cholangiocarcinoma, which the pathologists initially confirmed. I collected evidence, consulted with physicians, gathered old tumor slides and arranged for a comparative pathology analysis with the blessing of her (thankfully cooperative) current oncologist and sure enough, the surgeon was absolutely wrong (it was the same tumor tissue, mutation types and so on, the pathologists had misinterpreted the die stain results to reach the conclusions that the surgeon "wanted").
Had it not been for my insistent diagnostic work, my mother's recurrent cancer would have been misdiagnosed and treated with the wrong drugs. I have also caught several medical errors of other sorts over the last several years. I have unfortunately learned that the only way to get random residents (who are usually the most uncooperative doctors) to listen is to smack them down with a really obnoxious statement about where I went to college (Harvard) and put them in their place. More senior doctors usually know enough to recognize the limitations in their own knowledge and more importantly in the amount of time they have to allocate to each patient, and are usually more cooperative.
Anyway, doctor shopping itself shouldn't raise red flags. In my mother's case the shopping was mostly for treatment options, but I can imagine if the disease was itself rare or difficult to diagnose, one might have to shop around for diagnoses.
I have seen one case among people I know of a paranoid person who doctor shopped until she got the diagnosis she was looking for, which the rest of her doctors believed was wrong - and in that case the doctor-shopping was a sign of hypochondria. In all other cases, it's been justified, and generally the result of my friends being smarter than many of the arrogant doctors who've treated them. I don't claim to have an easy method for separating the hypochondriacs from the reasonably concerned patient who hasn't received a properly comprehensive diagnosis, but I'd say it's far safer to assume that a patient isn't a hypochondriac until proven otherwise, to avoid killing a legitimately concerned patient because they raise supposed "red flags" for you.
Re:Best of luck (Score:3, Informative)
Patrick, don't listen to this #$%@ doctor, keep reading and fighting for your health. If you are reading this patrick please remember to remind your doctor's you have a brain, and read up on patient rights. If you get really frustrated ask to speak to the Hospital Administrator the next time you are in the ER. Nothing says action like calling the Money, I mean boss. If it is the weekend ask for the nurse or doctor admin that is covering the hospital (not just the ward).
Now to the response...
Being a simple-minded newbie like Patrick I can't imagine how I can attempt to respond to...a doctor on the subject of medicine!
I will vouch for your credentials since you start by exposing your ego! "you have a patient who is trying to diagnosis and treat his own condition"
A few questions:
How could an intelligent patient that is not a doctor possibly understand all this medical stuff! How could the patient understand what they are experiencing! How is it a doctor can read and contribute to
I am not just spouting crap here, I am truly empathetic for Patrick's plight. I have had years of medical problems (now I'm fine) and ten times as many frustrations with egotistical doctors that don't listen. I could easily write a book of my experiences recounting when doctors where down right wrong.
I am not saying that the patient is always right however reasons should be given why they are wrong, with the proof to back it up (journals, etc). The patient knows his/her body best.
The 'pop' Patrick described could have been his mitral valve failing, which would not show on an x-ray. So there is just one counter diagnosis to your words of wisdom.
Let me demonstrate the extent an ego can interfere with care. My with had to be on coumadin (blood thinner) after about 3 weeks she began to develop sever pain in here right leg and foot. We called the doctor, he immediately put her on nerve pain medicine attributing it to a pinched nerve. The pain increased over the course of a week (with the new meds). In frustration I (close your ears children) began to research coumadin side-effects. The doctor swore that was impossible and that side effects to coumadin would present themselves within the first week. (he was wrong, read on). My reason for thinking it was the coumadin was the pain increased immediately after a shot and decreased steadily until the next shot. Seemed logical but a doctor would surely know better!
Desperate to help my wife I called the drug company who makes coumadin, I got their medical advice line (for doctors). I didn't identify myself but let them assume, after all the reading I had done I could talk the talk. Regardless after 3 hours on the phone with a doctor and pharmacist from the drug company (longer then our doctor had ever spent with us). They diagnosed my wife with a rare reaction to coumadin known as 'Purple Toe Syndrome'. They faxed me 30+ pages of case studies, documentation, etc. to back up their diagnosis. I read through it all, it was correct.
You know what the doctor did when I called him with the evidence? First he wouldn't get on the phone. I told his secretary he had 3 minutes to call or I called the administrator with the proof (he called in 2). He refused to believe me or the drug companies documentation saying well I have never heard/seen such a thing! Despite my wife recovering exactly as the drug company described, the doctor to this day still refuses to acknowledge he was wrong.
This is who you are dealing with Patrick. I hope you have someone to help you fight since it takes as much energy to get good health care as it does being sick.
God speed on your recovery, continue to ask questions, you are intelligent and more interested in your care then the doctors are.
Remember when you leave their office/ward, the doctor see more patien
Re:Best of luck (Score:5, Informative)
One of the reasons I stay in a teaching hospital is so I will not be pressured by the marketplace to see X number of patients per day.
Sometimes I see 4 in a morning... sometimes I see only one or two patients. I am in a unique position.
By the average person allowing HMOs, insurance, and the government to try to control medical costs... the system is now completely broken. Fossils like me hide out in teaching colleges where, for now, we have some insulation from the marketplace.
Re:Best of luck (Score:5, Informative)
I completely agree... thanks for clearing that up. I'll even support your clarification for you.
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?c
The objective of this study was to evaluate the sensitivity of C-reactive protein (CRP) elevation compared to erythrocyte sedimentation rate (ESR), leucocyte count and thrombocyte count in the diagnosis of infective endocarditis (IE). It was designed as a prospective study of suspected episodes of IE in adults in tertiary care at a university-affiliated department of infectious diseases. In 89 episodes of IE, CRP was available from the start of treatment. Median age was 66 years, 45 were men and 44 women. Median CRP concentration was found to be 90 (range 0-357) mg/l with only 4% normal values. Episodes involving native valves had higher CRP than episodes occurring with prosthetic valves. Staphylococcal origin, short duration of symptoms, short duration of fever and highest recorded temperature all correlated to higher CRP levels. The CRP response was also prominent among patients > 70 years old. Among non-responders, a few cases with simultaneous cirrhosis were noted. ESR was less sensitive than CRP, with a normal level in 28% of the episodes. It was concluded that CRP determination is superior to erythrocyte sedimentation rate, leucocyte count and thrombocyte count in the diagnosis of infective endocarditis.
Re:recent trend (Score:3, Informative)
I've noticed that in the last few years (maybe it's just my perspective, I don't know) doctors seem less and less likely to actually listen to their patients. I have recurring tonsilitis that I get at least once a year and usually more. I have been going through this since I was 6, when the doctors refused to take my tonsils out even though my mother wanted them to.
So basically, you are trusting your mother's medical judgement over your doctor's medical judgement?
IANAD, but googling, there seems to be some debate in the medical community about the value of tonsillectomies in children, especially considering that they sometimes grow back. According to the usual sources [wikipedia.org], roughly one in twenty tonsillectomies require emergency surgery days later to stop bleeding.
Sure, a lot of the bedside manner of doctors couleld be improved, but the average doctor probably knows more than you. If you go to several experts and discount their diagnosises, perhaps you are right -- but I would bet that the majority of the time, you would be wrong.
As for the antibiotics, let me tell you a tale:
About a year ago, I got pretty damn sick. In my own manner, I stayed in bed. I didn't drink all the fluids I should have, and became a tad dehydrated. On the way to the loo, the floor moved sideways, and I ended up falling down, which was the point my wife ended up taking me to urgent care.
After a bit of saline, and a few tests, the doctors prescribed some antibiotics. Being a well-read lad, I asked about if they were really effective -- how did he know that I had a bacterial infection rather than a virus.
The answer was interesting. He admitted he didn't know. But in a large percentage of people with my symptoms, it was due to a bacterial infection. The antibiotics cost less then the lab work, and the lab work took time, meaning that if I did have a bacterial infection, I wouldn't get effective treatment until after the tests.
Where's the evidence? (Score:3, Informative)
It's usually very hard to put a diagnosis without proper data. In this case, even though I'm currently preparing for USMLE-like examinations (you are presented with some data and you try to make a diagnosis), I find it very hard to trust Pat's "clues" because I don't know what is real and what is *his* idea of a diagnosis.
As a doctor I really like to hear my patients tell me actual facts and not their interpretations. E.g. "I have fever and sore throat" and NOT "I have the flu". Infectious diseases that may present with fever and sore throat are many (ranging from primary HIV infection to infectious mononucleosis to common cold) and it's highly unlikely that the patient has considered all of them. By focusing on a possible "diagnosis" the patient may ignore other signs that would be useful to the doctor.
I could list quite a few diagnoses that would fit Pat's description, but guessing is quite useless, especially in important health matters. Maybe some doctors did not follow proper standards of care but the fact that an assumed serious condition did not alarm so many of them is quite suspicious.
As a simple advice (I hope Pat is reading this!): IF you have fever (defined typically as over 38.3 deg. Celsius) plus a NEW audible cardiac wheeze (not mitral prolapse, which is quite different) you should be admitted to the hospital on the basis of an assumed diagnosis of bacterial endocarditis (unless *proven* otherwise). Bacterial endocarditis usually develops on PRE-existing pathological conditions (e.g. old rheumatic fever, IV drug use). Typically, cardiac ultrasound (why don't you go have one, if you are so worried?) will give very useful clues. Examination of the retina and blood cultures (at least three) are also necessary. If no signs of bacterial infection are found, several viral pathogens can cause pericardial inflammation but I can only remember Coxsackie and echoviridae off the top of my head. Viruses usually cause milder disease.
Finally, please do not trust the web, google, medline, nih. These are excellent data sources, but you are unable to properly interpret what you read without proper training. You can't just open "harrison's internal medicine" and hope to acquire the skills to make a diagnosis in a few hours/days/weeks. Find a good doctor and trust him. Sure, some people say that they correctly diagnosed their condition, even though the doctors where wrong. It happens, doctor's make mistakes. But on 99.99% of cases, your doctor knows better than you.
P.
Re:The problem with Patrick... (Score:1, Informative)
The problem wasn't responding to them anyway, so there wasn't much point. There _has_ been some improvement on amoxicillin and amox/clav, so I think there's something to that approach. BTW, actinomycetes responds to penicillin type drugs but fluoroquinolones don't do a thing for it.
I have only been on antibiotics since 11/6, was switched from Cipro to Levoquin, and then amox/clav. All prescribed.
Nobody has made any effort to culture anything yet, by the way. Is this standard medical procedure? Not that they'd be able to at this point with all the nuke bombs that have been set off.