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!"
You can start by pulling your head out and clicking on the mirror 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.
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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
This guy is way out there
WebMD didn't have anything that I could find, but a google found this eMedicine
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.
500 dollar reward for tip(s) leading to the arrest of the person(s) who stole my sig.
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.
Go to The Slackware Store and get a cute little penguin, or preorder Slackware 10.1. This is not a bad time to show Patrick some appreciation for what is IMHO still the best distribution out there.
- RE those "It's inconsiderate to post this on slashdot":
- NEEDS-YOUR-HELP.txt u rrent/PAT-NEEDS-YOUR-HELP.txt
"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/
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.
One of my old bosses had something like what he has. He ended up having this thing hooked to his waist belt that pumped him full of a antibiotics for months on end.
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...
Yes Francis, the world has gone crazy.
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.
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
Actinomycosis
It is by the juice of the coffee bean that thoughts acquire speed, the teeth acquire stains. The stains become a warning
Looking at PubMed for "Actinomycosis" brings up a couple hundred papers on this beastie.
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.
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?
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.
About 10 minutes after your post, Patrick himself posted to this thread clearly indicating that the Cipro he is taking has been prescribed and taken under the supervision of doctors all along. So it doesn't appear that your criticism is well placed here.
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.
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.
UMM... I don't know how you got marked up, though you're point is valid, you made the complete wrong assumption of what the guy did.
:-)
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
OK. I now read the rest of his letter. Didn't come through in the first go. It doesn't make things any better. Worse, really. While commendable, the googling is not helpful at all. His MD apparently believes in the presence of actinomyces WITHOUT culturing and is content with it being specified as israelii without grounds. Then, he gets prednisone (my guess would be to reduce dyspnea) after having started antibiotic treatment: -without culture -with a narrow spectrum antibiotic' -to which many micro organisms are resistant. Sloppy. If the antibiotics do not help the pred will make things worse. As stated in other posts (including by me) mr Volkerding needs to seek COMPETENT help and stop f*ckin around trying to doctor himself and going to people of questionable skill.
----- One learns to itch where one can scratch.
Hope you find treatment that works. Sorry most everyone on slashdot is more interested in moralizing and critiquing your past choices than actually providing any help. I did see one actual piece of information that might help. In case you missed it:
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!
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.
From what I read till now:
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 happen to you, but there is a facial variety. You get lumps, much like if a big wasp had bitten you. Your skin eventually tears (this is called a fistula) and you can see a red tissue. I hope you can avoid this.
More info as I come by. Get well. Damn, next time be sure to know the _reason_ why things happen!
This mentions "anecdotal evidence" of hyperbaric oxygen usefulness:a l/section13/c hapter157/157e.jsp
c tion13/c hapter157/157e.jspe plus/ency/article/00 0599.htm1 3-86702004 000200011&script=sci_arttext&tlng=enh ealth.xq23.com/conditions/part_1/Actin omycosis.html
9 /v12.n02 /1202.10/art-1202.10.htm
_ adam.cgi /encyclopedia/ency/article/000074trt.htm
x .htm ). I have no affiliation with any of these companies.
:-(
1 7.htm
http://www.merck.com/mrkshared/mmanu
Other links:
http://www.merck.com/mrkshared/mmanual/se
http://www.nlm.nih.gov/medlin
http://www.scielo.br/scielo.php?pid=S14
http://www.
This link is tricky, you may have to hit "stop loading" quickly, because the page is redirected to the current issue:
http://www.familypractice.com/journal/199
You probably don't understand Portuguese, but...
http://www.connectmed.com.br/cgi-bin/view
Also, I've seen a page (not shown here) talking about cancer induced by radiation treatment of actinomycosis lesions. Beware!
Your chances are good, I think. But avoid things that weaken your immune system, like sleeping too little. Also, this is a fungus, so try to get some solar radiation and fresh air.
Are you a smoker? I seem to have seen a description of pulmonary case in a smoker patient.
Another hint: there are some devices called "air purifiers" which kill fungus. A known brand over here is Sterilair (see, e.g., http://www.marcoware.com.br/sterilair/ingles/inde
You surely should have an equivalent product where you live. But, this may be useless, as it works by heating air, therefore killing spores -- which are NOT produced by actinomyces...
Anyway it may have some air drying effect, which I suppose would slow fungus development.
Also, try to think out of the box: what would you do to strenghten your immune response, particularly against a fungus? Does it have a non-pathogenic enemy you could use? Does it die with extreme low temperatures? Or extremely high (you could inhalate hot air with medication)?
Alternatively, and I have no idea if this works, you could breath special treated air only for some time -- artificially mixed or natural, like in this Poland mine: http://www.kopalnia-wieliczka.pl/english/trasa_t/
Sorry if I am shooting in the dark, but maybe some Polish friend knows something about this...
Good luck! And God bless you for all you've done.