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!"

"Last Post"

At least he has a sense of humor.

Keep a good thought for him with your deity

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.

Re:Keep a good thought for him with your deity

Superstitious or not, to a religious person, the knowledge that many people are "praying for them" can lead to a significant positive placebo effect.

Even if Patrick is not religious, knowing that many people are keeping him in their thoughts may produce a similar effect.

Proof

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.

Mayo Clinic

Being in Fargo, he's only 5 1/2 hours from Rochester, MN, where the Mayo Clinic [mayoclinic.org] 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.

Re:Mayo Clinic

The Mayo Clinic [mayoclinic.org] came to my mind too. He should get his doctor in Fargo to contact the Mayo clinic, tell them he has to be seen ASAP and don't take no for an answer or let them put him off.

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!

Hey folks

I've been getting some mail over this, and most of it is positive stuff that has me feeling better right now. Thanks. :-)

One thing I'd like to clear up is that I am not now, nor have I ever been self-medicating with Cipro or any other antibiotics. I've always taken them under the advice of and with a prescription from a qualified medical doctor.

Again, I'm feeling better and hope it continues. Thanks for the well wishes!

Pat

Re:Hey folks

Take care of yourself. Don't mess around with your health. Remember that you can't check out an older version of yourself from CVS if things go wrong.

Treatment Options

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.

Strange story

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.

Re:"if you can, please help"

You can start by pulling your head out and clicking on the mirror [osuosl.org] which works fine for me and probably everybody else that clicked on it. Since that didn't work for you or you didn't see it, read below.

-----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

How To Help: Be an MD. Admit him to a hospital.

> How am I supposed to help?
>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:Get Help Now, Maybe?

From the article, it isn't clear if the infection is in his lungs or not. If it is, he is also likely not getting enough oxygen to the brain. I should know. I had a pulmonary embolism a few years back. I almost died. The day I was admitted to the hospital I emailed my wife telling her to come home and take me there, I didn't dial 911. Why? My brain was starting to shutdown. I realized this years later when reading "Into Thin Air." I was essentially above 28,000 on Everest without oxygen. I don't know Patrick, but I hope someone who does can convince him, on the phone, that he should not necessarily be making decisions right now, he may not be in the space to. It does sound like he needs to be admitted.

I was lucky, I lived.

Re:Get Help Now, Maybe?

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.

Re:Get Help Now, Maybe?

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.

Re:Get Help Now, Maybe?

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).

Maybe /. could take up a collection?

Your logic baffles me.

Univ N. Dakota Medical school GO THERE!

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:[phone]

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!

who collect all the "zebra cases"

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:I know wikipedia is hip and all

WebMD [webmd.com]didn't have anything that I could find, but a google found this eMedicine [emedicine.com]
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

As per the dude's post, googling for sulfur lung granules [google.com] works fine.

The first hit is fine [emedicine.com].

This is Slackware!

"Format hard drive
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:I feel for the guy...

If you have a multi-year problem, go do the doctor!

Ah, so is that the secret to getting good health care in the US? ;)

Yaz.

Re:I feel for the guy...

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!

"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.

Re:Treating yourself with antibiotics

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.