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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 prescription 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 go 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 so I'm familiar with plaque. The
"plaque" I was getting out of my lungs was some nasty stuff and
smelled just like dental floss used after a couple of days without
brushing. Yeah, I know I should be better about that, but tend to
stay up late and if my wife is already asleep don't always turn the
light on and wake her up so I can brush before bed. To help me avoid
more tooth decay my dad bought me one of those fancy rechargable
electric toothbrushes that really powers away the plaque. It also
creates a fine aerosol mist of plaque, and I started to wonder if 4
years of using this brush had caused me to breathe in some of this
plaque mist and moved an infection into my lungs. I inquired with
several physicians about "lung plaque" and most of them had never
heard of such a thing. One told me he had heard of something like
that in people who were exposed to asbestos, though. Searching on
Google didn't turn up any relevant hits on the subject.
By early September 2004, I was spending a good portion of the time
I'd normally be working online flat on my back instead. The pain
that had started in my left upper back had moved into my left side
below the ribs, and my right side just under my armpit, too. Being
an ex-smoker, worries of lung cancer were starting to consume my
thoughts. A close friend of my father's had recently died from that
disease, and his initial symptom was also shoulder pain -- in fact,
they treated him for a presumed pulled muscle for many months while
the real problem went undiagnosed. Sometime in October I decided
that it was time to pull my head out of the sand and get in to see
my usual physician who runs a small clinic in Concord, tell him all
of this stuff, and at least try to get cancer ruled out. He ordered
chest X-rays, blood work, ran an EKG, and checked all my usual vital
signs. I told him about the "lung plaque" and reported feeling weak
all the time with no appetite. Being 6'2" and about 145 pounds I
knew I didn't want to be losing any weight. He also listened to my
chest and like all the doctors I've seen this year thought it sounded
mostly clear, like there wasn't anything major going on there. The
X-ray was a little different story though. It was taken on a
Thursday and I was told not to expect to hear anything until sometime
the next week. Well, the next morning the phone rang and it was my
doctor. He told me there was something "suspicious" seen in my left
upper lung (right about where the long-standing pain was), and that
I needed to get some more X-rays at the local hospital instead of
the imaging center I'd gone to before. They weren't going to be able
to get me in there until the next Monday.
The next morning I decided that I'd better FedEx some T-shirts that
my friends at the GUS in Brazil had been waiting for (not knowing
how much longer I could procrastinate on that, etc). While driving
back I felt a sharp pain in my left side and felt something in there
pop and drain (maybe into the pleura?), and since cancer was well on
my mind, as well as the fact that this had been going on for way too
long, I headed straight to the nearest ER hoping I wasn't bleeding
internally or something like that. By the time the doctor there saw
me I was holding onto my left side which seemed to help the pain a
bit. He ran a UA (and called it "questionable") and sent me down for
a CT scan. No iodine dye -- just a lower abdominal scan to see if I
had any kidney stones (and yes, I related as much of this other info
as he had time to hear in a busy ER). No stones were found, but he
wrote me a script for Cipro and some pain medication. I showed up
at the hospital the next day (in only slightly better shape) to try
to schedule additional X-rays, but they had misplaced the fax my
doctor had sent in, and they didn't want to schedule additional images
until they had seen the first ones. I never did see those myself,
and the imaging center requires a 48 hour notice to check out films.
It was starting to look like going through this medical center was
going to be a slow process, and I wasn't sure I had that kind of time.
So, I made the decision to pack up the car and drive back to North
Dakota from California. My Dad has been part of the medical community
for years there, and knows a lot of people. I figured he would know
who I should be seeing, and could help me set something up. A week
ago Sunday (Nov. 7) my wife Andrea and I set out to make the 1680 mile
drive to Fargo. We made it as far as Monida Pass. This is a mountain
pass on the Idaho/Montana border with an elevation of 6820 feet. On
the way up the grade I knew it wasn't going to be kind to me. I felt
an intense squeezing under my sternum and started to sweat and nearly
passed out. I've never previously had any trouble with high elevations
and have done hiking and mountain biking at much higher ones than this
particular pass. Luckily Andrea was driving at the time! We decided
that we would stop at the next fairly large town with a hospital and
see what they could do for me. This was Butte, Montana, an old mining
town, and home of St. James Hospital. The folks there were absolutely
wonderful to me. They did some more blood work (finding only a slightly
low potassium level), chest X-rays, and a CT with the iodine. They
didn't wait long for the dye to circulate because they said the main
goal there was to insure I didn't have a pulmonary embolism. I did not
have that. The doctor and radiologist also told me my lungs looked
"slightly inflamed" and to stay on the Cipro, but that I was unlikely
to keel over before making it to Fargo, especially as I'd be losing
elevation rapidly upon heading east. They packed the X-rays and CT
scans into a big envelope and told me I could borrow it to take to
my doctor in Fargo, and that they see a lot of people come in from that
pass with similar problems. So, off we went. I was mostly ok getting
back to Fargo, but never lost the feeling that someone was leaning on
my chest pressing on my sternum, and was occasionally short of breath
even after getting down to the 1000 foot elevation.
Back in Fargo, I had an appointment with an internal MD on Thursday
morning. By Wednesday night the pressure under my sternum was so
bad that it felt like I was having a heart attack, and was again
taken to an ER (the Slackware 2004 ER tour continues). While there
I started to feel better, and the pressure was letting up, and I
did not want to be a GOMER in their emergency room. The doctor I saw
the next day focused on the possibility of a thyroid or liver problem,
and ran some more tests that came back looking ok. He thought the CT
from Butte looked "within normal limits". That night I again got the
squeeze (pericardis?) but suffered through it because I did not want
to go back to the ER. I've had at least one strong attack every day
since, along with the sensation of "pop and drain" in all the original
pain points and under my sternum. The next day (Saturday, 13th) I went
to a local clinic with an MD in private practice. This guy was/is
great, and has seen me about a half dozen times since. He agreed
that I had signs of serious infection, including a disgusting
garlic/sulfur smell you could detect at 50 paces. He put me on
levaquinone and metronidazole hoping to have a better chance of
covering whatever the responsible bacteria was. Took more X-rays
but couldn't see anything obvious. We discussed getting an
echocardiogram to look for pericardius.
Then, I got my Google breakthrough. One of the symptoms I'd
noticed over a year ago was feeling like something hard was stuck
in my throat causing me to cough. Maybe 4 times I was able to
recover was looked like a small (<= 1mm), round, hard granule that
was light yellow in color. I'm sure I swallowed a bunch of them,
but hadn't seen too many examples and had not remembered to
mention this to any MDs along the way. I googled for "yellow lung
granule" and maybe the third hit mentioned something called
Actinomycosis. There it was, a laundry list of the symptoms I'd
been experiencing. Furthermore, the disease is caused by the
same bacteria that normally lives in the mouth and in dental
plaque. Infections are most common in the jaw, but sometimes
occur in the lungs and spread elsewhere through the body. The
hallmark of the disease is the finding of small granules of
sulfur. Aha, I thought. Now that I know what this is, I should
be able to get some treatment. I tried "sulfur lung granule" on
Google instead and had a ton of hits, all highly relevant to
the situation I was experiencing. I printed out one of the hits
from the Johns Hopkins Microbiology newsletter and raced back to
the clinic to tell Rodney about it. He looked it over and
thanked me for doing so much work for him (whatta guy :-), and
on the basis of what I'd told him felt there was a good chance
that we were looking at the answer right there. None of the
antibiotics I was on would touch this -- they were all too modern.
That was one of the terrible side effects of old antibiotics;
they would kill the natural flora in the mouth and GI tract and
you have all kinds of problems like fungal and yeast infections
as a result. So the newer classes of antibiotics are carefully
chosen to avoid killing those types of bacteria, and this was
probably caused by Actinomyces, the most common bacteria in the
mouth. When found in a lab culture, its presence tends to be
discounted as normal. So, what kills this stuff? Good old
penicillin. Yup, while everything else in the world became
resistant to penicillin and amoxicillin, Actinomyces israelii
never did. Rodney had me quit taking the other antibiotics and
put me on amoxicillin (even though V-cillin-K 1g qid might have
been a better choice). I've been on it for a couple of days and
I'm doing a bit better. I don't stink anymore and the palms of
my hands have quit sweating. He also gave me five days of
prednisone which seems to be lessening the frequency of the
chest attacks, although one did get me out of bed at 03:00 last
night (and I took the opportunity to start working on this report
hoping to save myself). Problem is, things are somewhat
contained, but still appear to be spreading. I'm getting sudden
pressure releases occasionally that seem to be coming from the
pleura or pericardium, and this morning had one that seemed to
be inside my head. This has me more than a little concerned.
- From everything I've read about this, it is a really tough
thing to treat. Oral penicillin generally does not do it. What
is needed is 2 to 6 weeks of IV penicillin G (12 to 24 million
units a day), followed by 12 months of V-cillin-K 1g four times
a day. Amoxicillin 500mg 3 times a day has me in a holding pattern,
but it's probably not going to do the trick. Rodney has no ability
to directly admit me to a hospital without first sending me to an
infectious disease MD there who would have to agree with all of this.
I have an appointment on Friday.
There you have it. That's where I am today. If anyone out there
is familiar with this and is able to help, please let me know.
I'll travel anywhere I have to at this point. I can be reached on
my cell phone at (925) 535-9062. Please call only if you can help
get me some high-dose antibiotic treatment. I have been trying to
check email at least once a day at
volkerdi@slackware.com as well.
I'll accept whatever you'd like to send me at that address (as
usual :-), but if you're contacting me with an offer of help please
add [HELP] to the subject so that I'll be able to find those emails
more easily. Say prayers, knock on wood, whatever. I need all the
help I can get. Anything sent here will be confidential unless you
say otherwise, too. I also hope if I'm off the job for a couple
more weeks that the Slackware community will still support me when
I can return to the job, which I'm really itching to do ASAP (I'm
not looking for donations though). This experience has changed my
perspective on a lot of things, and I think the future will be
different (and better).
Oh, there's this blood test result which I should also mention.
While almost everything looks normal there, the following white
cell counts are (barely) out of the normal range:
Neutrophils 79 (high) NormalRange = 40-75
Lymphocytes 16 (low) = 20-45
Absolute Eosinophil 0.00 (low) = 0.015-0.500
BTW, my login quote tonight was "Snow and adolescence are the only
problems that disappear if you ignore them long enough." heh.
Thanks for listening.
- ---
Patrick J. Volkerding
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