
So...what the hell's wrong with you, Shooter? - Shooter
[NOTE: This post is both personal and medical in nature and only about hacking in the sense that it is about searching for a solution to a complex problem.  Some of the “HN is for hacking only”–types may not want to waste their time reading it.  It’s also <i>extremely</i> long, but I don’t have or want a blog right now.  You’ve been warned.]<p>This is my answer to apu's question to me on another thread about ALS (and, specifically, my misdiagnosis with ALS and other illnesses):<p>Q: "If you don't mind me asking, what was the final diagnosis? How was it discovered? And how are you coping?"<p>A:  Basically I had multiple infections (both viral and bacterial) that were slowly eating me alive.<p>I started having migratory shooting pains, chronic joint pain, extreme fatigue, and rapid weight gain years ago.  (I gained 100 pounds in about 4 months, with absolutely no change in my diet or exercise program.  I went from somewhat athletic to fatigued fat-ass that slept 20 hours a day after a brief flu-like period.) They initially tested me for thyroid and pituitary tumors.  That first MRI is how they found the first spots on my brain - before they were full-fledged lesions.  They were just hyper-intensive spots and 'plaques.'  It's more common, by the way, to <i>lose</i> tons of weight with infections, but the infections affected my hormones in a way that made me balloon up.<p>I kept getting new symptoms over the years.  Sleep disorders, aphasia, tremors, severe chest pains, left arm paralysis, left side of body paralysis, neck-down paralysis, memory loss, tinnitus, passing out, chemical sensitivity,  etc. etc.  In the end, I probably could have been Stephen Hawking's stunt double appearance-wise.  As I said in the other thread, I was (mis)diagnosed with Parkinsons, Alzheimers, MS, CFS/FM, and ALS along the way - each time based on my symptom progression and test results.  Technically, I <i>still</i> have many of the other things I was diagnosed with based on symptoms and test results -  by clinical definition - but they were not the underlying, causative issues. They were just the icing on the cake.<p>I saw <i>at least</i> 22 doctors over the years, including some at top hospitals (Mayo,etc.)  A few of the doctors thought I was nuts, because of the sheer number of symptoms.  One doctor didn't even finish the exam and commented that it was either <i>all</i> psychosomatic or else I was the unluckiest bastard ever and I had 25+ <i>different</i> diseases. Most doctors would just space out at some point and start treating whatever their specialty (or first thought) was.  I had enough symptoms and bad test results to keep them all busy.  If I was seeing an endocrinologist, for example, she would try to treat just the endocrine issues (the infections affected my endocrine system, so my hormones were waaaaaay out of whack.  One endocrinologist said I should be in medical textbooks because of my crazy high/low hormone levels.)  I tested positive for some autoimmune disorders, so the rheumatologist kept busy.  I have sleep disorders (again because of the infections), so I was given a CPAP and sleep meds by a sleep specialist.  I have severe migraines (lesions!), so migraine specialists put me on migraine meds.  Etc. etc.  Not all these meds at once, of course.  The infections were playing havoc with my brain, heart, and nervous system...and my endocrine and immune system were along for the ride.  I had a 2-3 year period where it felt like I was having multiple heart attacks every day.  I’m amazed my wife didn’t leave me.<p>The multi-systemic nature and the fact that certain symptoms tends to reinforce or mask each other made it very difficult to figure anything out.  When you have certain infections, for example, your body will naturally retain heavy metals and toxins from the environment - all on its own - in a self-protective attempt to kill off the invaders.  So I tested off the charts for toxic metals and the ‘environmental specialist’ thought that was the underlying problem.  But, of course, it wasn't. They cleared most of the metals and I still had all the symptoms. I had all of these heart symptoms, but most of my tests came back normal.  Normal stress test, normal basic EKG, etc.  They didn’t find any heart issues until they did less-common tests (tilt-table testing, etc.) I had enormous trouble finding a physician who was willing to really try to figure out the underlying cause of everything instead of just treating individual symptoms.  I didn’t want to be on 80+ meds for the rest of my (possibly short) life and not even know what the hell was wrong with me.<p>I eventually narrowed down what I personally thought I had, based on my own research and background.  Neuroborreliosis (neurologic Lyme disease) was one of my guesses, because I had done an extensive forestry research project at one point before my illness and I knew I had been bitten by ticks that may have been infected.  I had never had a rash, though. And I didn't think any of my ‘guesses’, individually, could explain my vast array of symptoms.<p>I finally went to this doctor that was supposed to be an amazing diagnostician  - “Dr. House without the 'tude”, I was told .  I started reading him my list of symptoms - in chronological order.  (It was one of the ways I had learned to cope with the discouraging doctor visits...if I was staring at a sheet of my notes, I couldn't get pissed because the doctors were rolling their eyes at me.  I also needed the notes because my memories, and sometimes my speech, were completely shot.)  Usually, the doctors would stop me fairly quickly when I started listing symptoms.  This guy listened intently, and then started accurately guessing the next symptom on the list before I could even say it. He did that for about 7-8 symptoms.  He gave me the most accurate description of some of my symptoms...more accurate than I could even muster.  ["Does it feel like someone is squeezing your heart with their hands and won't let it expand?"  "Does it feel like you're being stabbed with a cattle prod right here?" etc.] I often had trouble choosing the proper words to convey certain symptoms, in part because I knew it sounded crazy.  But he was nodding the whole time and seemed sincere.  He said he thought I had a major environmental toxin problem (heavy metals, chemical sensitivity, etc.) <i>OR</i> I had one or more vector-borne infectious diseases.  He said either thing could potentially explain all of my symptoms, and that he leaned toward the latter because of the migratory nature of some of the symptoms.  He was amazed I had never been tested for some infections, despite having been to some of the top hospitals in the country.  The fact that my shooting pains were often migratory was one of the main things that had made some of the doctors think I was a loon.  This doctor says, “Uh, <i>DUH</i>, it usually feels like the pains are moving around because they <i>are</i> - the things that are causing them are moving around, both in your body and in your brain!”<p>I had already been down the toxin path, so I was tested for a range of vector-borne diseases.  I had almost all of them that I was tested for.  Lyme, Babesia, Ehrlichiosis, etc. etc.  Plus a liberal dose of virii at very high levels.  I had had some of them so long that I was no longer showing a normal antibody response, but I had other telltale markers (specific cell parts on tests, etc.).  [The accuracy, availability, and expense of these tests is another tangent I’ll avoid right now.]<p>Oddly enough, once this doctor correctly diagnosed me he refused to treat me.  The insurance companies really give doctors who treat chronic infections a hard time, because the long-term treatment of certain infections is more expensive that treating a late-stage AIDs or brain cancer patient.  Some doctors - including at least one Nobel laureate nominee - have lost their medical licenses or been forced to stop treating infected patients because of insurance company influence.  It's a very complicated, political issue.  Very frustrating.  Too complicated to get into here.  Anyway, this doctor said he wanted to treat me, but was literally scared to do so for fear of losing his medical license or his ability to offer insurance plans.  [There is an award-winning documentary called UnderOurSkin (http://underourskin.com/) that explores "chronic Lyme", and it gets into the insurance, political, and patent issues, etc. It also explores a theoretical link between Lyme and other diseases.  It's very good.  It doesn't go into the co-infection issue much, because it is Lyme-specific - but it gives a great overview.  The documentary trailer is at:  http://underourskin.com/watch.html   One of the guys in it is a physician that was also misdiagnosed with ALS,  and there’s a baseball player that was misdiagnosed, Amy Tan (Joy Luck Club author) is also in it.<p>Anyway, I tested positive for at least a dozen viral and bacterial infections, but they could have potentially all come from one tick bite.  I think the estimate is that 30% of all infected ticks carry at least one other co-infection.  So, theoretically, I could have been bitten by just one really 'sick tick.'  Or I could have picked up other infections once my immune system was compromised by an initial infection.  No way to know for sure.  [Oh, and the fact that I never had a rash didn’t mean anything because 50% or more of infected ticks don’t cause a rash at all.]   Only a certain percentage of people that are infected with some of these diseases develop chronic issues, so I may have had a weak spot in my immune system due to genetics or something.  That’s one area of research they’re exploring.  I know they’ve found at lease one statistically significant genetic anomaly that predisposes you to getting sicker with at least one of the viruses.<p>Some people - even lauded medical professionals - think that most infections can be killed off fairly easily with short-term antibiotics or antivirals (which is part of the debate in that documentary I mention.)  That’s one of the arguments the insurance companies use.  There are many mitigating factors, though, and most animal studies/vivisections say something else entirely.  Some infections have biofilms that protect them. Some form cysts that protect them.  Some infections grow drug-resistant.  Some meds don't cross the blood-brain barrier.  Different people have different immune responses. Etc. etc.  The medicines themselves are very dangerous long-term, and you also have the serious problem that the infections release toxins as they die off...so by killing them you usually get <i>worse</i> in the short-term.  The toxins released can kill additional tissue or trigger a stroke or heart attack because of the other symptoms.  It's a weird balancing act between getting a medicine to work without making the infections resistant or triggering too much of a toxin/autoimmune response.  It’s drug hacking, in a way.  I’ve had two strokes.  One because of a misdiagnosis when they put me on steroids and I had a major inflammatory response and once <i>after</i> I was properly diagnosed because I wasn't fast enough on the trigger to recognize a change in symptoms when I was pulsing between two antibiotics.<p>By the time I was properly diagnosed, I had permanent damage to my brain (lesions, some may heal), heart (cardiomyopathy,etc.), mitochondria (extrinsic mitochondrial disease - the infections ate the lipids from cells, among other things), and central nervous system (advanced neuropathy, etc.)  I also have the hormone, sleep, and autoimmune issues.  I've been on various antibiotics, antifungals, and antivirals for about 15 months.  And pain meds.  I only decided I had my final, correct diagnosis because this was the first logical answer that explained literally everything, had confirming test results, and allowed me to actually start getting better over time once I started treatment, toxin setbacks aside.  Some of my symptoms have completely disappeared, but some remain. Mobility-wise, I've went from a wheelchair to a walker to now only needing a cane <i>sometimes</i>.  I still have some memory loss, some aphasia, some numbness, some shooting pains, etc. - but I'm 80-90% better than when I started treatment.  Not only in frequency of symptoms that remain, but in their actual intensity. I mainly see an infectious diseases specialist now, and he keeps warning me that I will not <i>continuously</i> get better but will instead have a rollercoaster ride until I level off at my final “condition” – because of the toxins, immune response, and residual damage.<p>They're not sure <i>exactly</i> how much of the damage is permanent.  Some of the lesions are, for sure, and the mitochondrial damage is fairly severe (I technically have a small fraction of the energy, <i>literally</i>, of a normal person.)  I'm amazed by the improvements already, so I'm still hopeful.  My wife is pregnant with out first child, and everyone is scared/nervous how I will handle it.  I still pass out occasionally, so some family members don't want me to hold my own kid.  (Admittedly, I've fallen down stairs a few times after passing out.)  Insurance has already stopped paying on certain meds and will most likely eventually stop on others.  One of my antibiotics is $2500 a week, because the stent goes directly by the heart and you have to have a home health nurse change it to (ironically) reduce the risk of infection.  I’m relatively fortunate that I’ve been able to get and afford my treatments thus far.  I’m <i>very</i> fortunate that I didn’t have a completely untreatable disease.  I also think this post should win an award for biggest “TMI” (Too Much Information) <i>ever</i> in the history of HN.
======
sachinag
I am assuming you are an American citizen. If you haven't already, you need
to:

1) call your Congressperson's local office (not DC) and ask for someone in
constituent services who works with health care issues. Do this tomorrow. If
your insurance company is denying you _any_ care, and you have a paper trail,
they should help. If your Rep can't help, then contact your two Senators'
offices. Generally, Reps are much better with this sort of constituent
service.

2) call your local Fox affiliate and tell them your story. (November sweeps
are coming up, and this is a perfect post-House nighttime news story).

3) put up a web page that has your story, pictures, and easily found contact
information for the follow up press stories that will occur.

This is your best path to making sure you don't get denied coverage from your
insurance company (and it's amazing they haven't found a way to drop you yet)
for the benefits that you are entitled to.

~~~
ErrantX
It seems awful to me that all of that effort is needed just to make sure your
not screwed over by the insurance company :(

Or is it just the norm and Im not used to it?

~~~
olefoo
Speaking from personal experience, it is the norm.

In the US you are completely on your own, and your insurance company is not
your friend; no matter how dutiful you were in paying your premiums. If you
have a chronic, treatable condition, expect to fight it out with your
insurance company 2 to 3 times a year over whether or not they will live up to
their contractual obligations.

It is my considered opinion that if Obama wanted to lever the healthcare
debate around to actual change, the only tool he would need are the RICO
statutes. And I don't think his prosecutors would find it difficult to bring
cases.

~~~
yummyfajitas
Perhaps a solution to the problem of chronic, treatable conditions is to make
health insurance not pay for them.

In short, turn insurance back into insurance (protection against low
probability, high cost events).

~~~
sachinag
Wait, WTF? Isn't getting bitten by SuperTick exactly the sort of low
probability, high cost event insurance is for? Just because something is
chronic doesn't make it low cost.

~~~
yummyfajitas
I'm not seeing how getting bitten by a supertick is chronic. I was responding
to the meta-problem (insurance not paying for chronic conditions), not the
OP's specific problem.

~~~
Confusion
It sounds like you work for an insurance company. If you start along this
path, they will find an incidental causation for every chronic affliction.

------
mad44
Shooter, how did you find this Dr. House? You neglected to talk about this.
And I think this is an important piece of information that can benefit us
trying to get a resolution for our own mystery illnesses. How do you go about
hunting a good doctor?

~~~
Shooter
I feel some people are focusing on the wrong thing, most likely because of my
poor presentation. I'll try to answer your question, but I also want to
elaborate a bit:

In relaying my story, I kind of 'cast' the diagnosing physician(1) as the
hero, in part because it was such a relief to me for someone to finally listen
and think logically, because it was relief to me to finally have an
answer...and also because I was trying to shorten the post. But remember, by
the time I saw this doctor, I had my condition narrowed down to a couple
things already, and one of my guesses _was correct_. A search engine could
have had equal billing, diagnostically. This guy didn't have a halo on his
head when I found him or a neon sign saying he was "The One." He was _not_ the
first person I was told was an amazing diagnostician or "like House." He was
just one in a long line of doctors, albeit one of a small number that was
compassionate, open-minded and listened. I never brought up _my_ ideas about
what I had until I gave the doctors a chance to give me their ideas, because I
didn't want to bias them. This doctor was just the first one that hit on the
actual problem, and was willing to order confirmatory testing. It was largely
odds. If you see enough doctors, it will probably happen eventually...a
million typing monkeys and all that. The _real_ heroes are the doctors who
will actually _treat_ you once your diagnosed, even at great risk to their
livelihood. The real heroes are the ones that will fight the insurance
companies and help you while you're _going through_ treatment.

The final diagnosis wasn't really magical, or the act of an amazingly
brilliant doctor. Yes, having the diagnosis was a psychological relief, but
the most important could be this: the big, insurmountable problem for most
people will not be getting a diagnosis but finding - and paying for - a
treatment. There is basically a witch hunt in this country for doctors that
diagnose and treat complex diseases. Complex means expensive, and insurance
companies don't like that. Getting a proper diagnosis can be an enormous
problem, but it is often just the start of the journey.

(1) Um, I'm getting tons of emails asking for my specific diagnosing doctor's
name - which I simply can't give out. If you have any of these particular
diseases, he will not treat you anyway. Remember, he turned me away. He would
not even _start_ a battle with the insurance companies. If you have something
unusual or that is complex or that is outside of the insurance company
parameters, he would send you elsewhere for treatment anyway.

~~~
Shooter
That all said, here is how I found "the doctor":

1\. I was persistent. I saw lots of doctors. The 22 number I mention in my
post is mostly just the _specialists_ I saw - not even all the general
practitioners I visited.

2\. If I were to rank the doctors I saw, the better ones were either members
of IFM (functional medicine), they were DOs (shady origins, but a more
holistic viewpoint), and/or they were internal med doctors. Rheumatologists
only seem capable of seeing certain things. Neurologists only seem to see
certain things. In general, specialists were unable to see or care beyond
their specialty. Which, I guess, is somewhat understandable. [The specialists
did find clues, however, like the lesions and the hormone issues that
eventually helped me find the underlying cause.]

3\. I asked around for someone who had a good reputation as a diagnostician. I
asked doctors, business leaders, and hospital administrators. Unfortunately,
many doctors seem to pride themselves on their amazing diagnostics skills,
whether they actually possess them or not. So, I also asked for "open-minded"
and "compassionate." Compassion implies a good listener, which is probably the
most important thing because you can't find a pattern if you didn't hear about
it. Some of the worst doctors I visited were the famous ones. They were too
busy to listen. IIRC, I think the final diagnosing doctor had been trained at
a podunk med school in Cuba or something.

4\. I was an informed patient. I used to work in the medical field (piss-
collector, clinical drone, researcher, and software developer.) I researched
extensively on my own. (This can backfire for some people, because they
develop cyber-hyperchondria.) In any case, I knew - or learned enough - to get
a lay of the medical landscape and I used that to my advantage.

5\. I kept a 'journal' that listed what symptoms I had on what day, etc. - it
helped me find patterns. Some organisms have a specific lifecycle, so that
helped me in my own search. Sometimes the only pattern was that there was no
pattern, but the journal exercise was still very helpful. Just be careful
about looking like a nutjob if you carry a handwritten book of your woes into
a doctor's office.

6\. I was an inpatient patient. I know doctors are just average schmucks like
the rest of us and they make mistakes, because I've worked with them. So, if a
doctor didn't listen or was a jerk, I never went back. Some people think
doctors are holy or something, and they continue going to visit a jackass in
the hopes that something will change. That can kill you. That tendency is
especially prevalent in older people.

7\. I acted professionally when dealing with doctors. Enough of them thought
that I was nuts that I didn't need to confirm their suspicions by acting too
emotional or unreasonable. Even though I _was_ often emotional, I kept it
under wraps.

8\. I tried to find doctors that kept up on the latest research, or that at
least seemed to _care_ about new research and treatments. To be honest, I knew
more about the most current medical studies than _any_ doctor I visited,
including the final diagnosing physician. I was more motivated and I had more
time on my hands. But I used my knowledge to separate out the doctors who read
the bare minimum for their CEs from the ones that were genuinely interested in
their field and read broadly for their own benefit.

9\. To restate an above point: I never brought up _my_ ideas about what I had
until I gave the doctors a chance to give me their ideas, because I didn't
want to bias them. I had to remain open-minded too. You may not like the
answer you get, but if there is compelling proof about it you have to accept
it.

10\. Read and know your insurance policy if you're in the US, and fight for
your rights.

------
mike463
This is an amazing story. I'm glad you're onto the road to recovery.

For hacker news -- this is actually a perfectly reasonable amount of
information to provide.

Having worked in many facets of systems engineering (in addition to an eye-
opening stint in tech support) I can see many analogies between the medical
diagnosis you had to obtain and computer diagnostics.

Just like medicine, a lot of computer problems aren't even diagnosed. A
computer reboot is the way of fixing some problems without bothering to
diagnose them, like antibiotics.

Generally, a hard computer bug getting fixed happens best if -- a LOT of
people encounter it OR someone takes a personal interest in the problem OR
there is meticulous documentation that makes it easy to pinpoint what is
happening.

People don't notice that this is the same in the medical profession. You
helped yourself by carefully documenting what happened, and I believe that's
what helped you in the end.

All the best to you (and congratulations on fatherhood!)

------
noonespecial
Dude, that well and truly sucks.

I work around hospitals some and every once in a while I get the odd feeling
after watching a specialist scratch his head over a fuzzy black and white
"slice" made by in imager with a magnet the size of a garbage truck that its
all still so _primitive_.

Medicine has a long way yet to go.

~~~
zeugma
Yeah MRI machine are definitively cavemen technology
([http://en.wikipedia.org/wiki/Magnetic_resonance_imaging#Phys...](http://en.wikipedia.org/wiki/Magnetic_resonance_imaging#Physics_principles))
you should help

~~~
noonespecial
Well, yeah, I know, magnetic resonance is a mighty cool hack. I was just
hoping that it could be maybe, you know, a bit _smaller_. Not costing as much
as a first class ticket from NY to Tokyo for a trip through one might be a
nice touch as well.

Hell, lets just go all sci-fi and get right to the part where there's an
iphone app for waving over a person and seeing their insides in full color in
real time...

~~~
chrischen
Isn't it much cheaper in countries like in Japan? I heard it was under $100 to
get scanned.

~~~
shiro
In Japan MRI is covered by public insurance. You only need to pay around
$60-$80.

~~~
yummyfajitas
For a low quality scan (resolution about 1/3 what you get in the US). A 2
tesla scan (what you get in the US) will cost the same as in the US (though
the government may subsidize it).

I've heard it suggested that Japan got "scan-happy" (patients want a scan,
kind of like how US patients want antibiotics for their virus), so they built
cheapo MRIs to give them what they want.

~~~
shiro
Thanks for the info. I didn't know.

------
cturner
You present well.

I've thought it would be difficult to become a good doctor because the
turnaround time between tests is long, you don't know if patients are lying to
you, and if you're not working properly then your patients won't come back so
you lose your feedback loop. This clashes with the hacker experience where the
turnaround time for problem solving is often very rapid, and the problem
sticks to your desk until you've solved it. Unlike with hacking, you have no
opportunity to improve the system to make it easier to diagnose future
problems with.

I love the show 'House' because I identify with all the ways he works -
leonine work habits, putting career interest ahead of body, largely
unsuccessful attempts to modify energy levels with caffeine and alcohol,
deliberately breaking things to see what happens, lupus ("It could be a
threading bug!"), difficulty relating to normal people who don't orient around
career obsession. I've fallen in love with supporting clients through API
integration because it has a whole social dynamic that adds to the complexity.
As with patients - when the other side tell you they've done something how can
you be sure? "Everybody lies" / "Trust but verify".

------
Jem
Firstly, thanks for sharing, and what a shit thing to have to go through (and
continue to go through!)

I didn't really understand half of what you wrote because I don't have a
medical background and I don't think watching House now and again qualifies me
to have an opinion. With that said, I did want to comment on your last
paragraph regarding having your first child... My partner was born with mild
cerebral palsy, has major balance issues and little to no temperature sense.
I'm 35w2d pregnant with our first and he's already had comments (right down to
"I didn't know people like you could have kids") on his ability to raise
children. My point being - you're not alone. There will always _be_ doubters.
Please don't let those people, however nice their intentions, get in the way
of what should be an amazing experience for you and your wife.

On that note, congratulations & good luck :)

~~~
Shooter
Thanks for that. We're nervous about the baby, but I've improved enough I
think I'll be fine if I'm very careful. And I've asked the biggest 'doubter'
to buy us a helmet for the baby ;-) Congratulations to you and your husband.

------
kniwor
This might be way out there but have you investigated what the cost of going
to another country and getting treatment there would be?

You already have a correct diagnosis. You sort of know what needs to be done
and only need docs qualified but unafraid to do it and cheaper meds. You might
be surprised how comparatively cheap all that can be outside US and the local
laws in other countries might mean that the docs there don't have to worry
about treating you there like they have to in the US. (Anecdote: A friend of
mine once calculated that despite what the insurance covered for him, if he
had come to Bombay and gotten treatment at the best facilities staying in a 3
star hotel all the while, it would have cost him less and he would have
received way better treatment from more qualified docs.)

Good luck to you. Hope you get well soon.

------
_bbks
Shooter, I wish you the best of luck for your continual recovery.

I've been ill (dizzyness, almost passing out, weak left arm, chest pains,
burning throat, swollen glands, twitching muscles, burning/pinching at joints)
since June and I just fell out with my NHS (UK) doctor this week and went
private.

The NHS doctor has been telling me its a virus and it'll go away on its own,
and the muscle twitching was normal for a few days. I finally went back last
week (have been back 3-4 times before that) when he was promising me a blood
test to check for an infection and he is refusing me, he says we only have 10
minutes and I have too many symptoms, and even that he never said it was a
virus infection.

So the few symptoms that he will look at are sending us down completely the
wrong path, I don't want to keep chasing symptoms when we should be going
after the cause.

I called the NHS directly and they told me to demand a blood test, but the
doctor still declines. He even went as far as to tell me I don't have the
symptoms I was telling him I had.

So on Wednesday this week I called a private doctor, got an appointment two
hours later, she looked at my entire list of symptoms (15~) and checked me
over, confirmed I have an extremely high temperature, inflamed throat and
swollen glands. Had my blood tests today and I'm going in for the results
tomorrow. That's more action in 3 days than my NHS doctor managed in over 3
months. I just hope it'll all be over now, as I've been trying to launch a
business throughout this.

Before contacting the private doctor I felt like id slipped through the net
and it was useless. I've not even been checking HN much lately so it was pure
randomness that I stumbled upon this thread.

I still have a referral for neurological tests and a brain scan with the NHS
if required. But I have been adamant that its not a family running disease
because both my Mother and Sister have the same symptoms, all occurring since
roughly the same date. If it wasn't for that id possibly still be following a
(hopefully) less likely route.

A drop in the water compared to what you've been through, but I think I can
relate at least a little to some of the initial frustrations that you've had
to deal with. Thanks for sharing your story and I'm glad that you eventually
pulled through all the confusion and are getting the treatment you need.

------
tsally
I really appreciate you sharing this. Reading a story like this doesn't have a
direct applicable impact on my life at this moment, but I feel I am better for
having read it.

------
axod
Thanks for sharing.

Public health care is sorely needed in the US IMHO. Whilst it doesn't
magically mean everyone gets expensive treatments, at least it takes away some
of the problems. The last thing you want to do when sick is have to deal with
money/insurance.

Really hope things get better for you, and enjoy the new baby!

------
mattiss
This is terrible. Is there any question left as to whether private healthcare
is a disaster? I have known a few people who have been denied healthcare
coverage when it is quite clear that it is due. Either there needs to be a
regulatory board that can overrule insurance companies or we need to implement
public healthcare.

~~~
raspie
Public healthcare is not inherently better than private, it has its own
problems. I think it is easier and cheaper (both technically and politically)
to fix private healthcare incentives than to go the public way.

~~~
jodrellblank
How might you resolve the conflict of interest that private insurance
companies are better off if they refuse your treatment and you die than if
they pay for it?

~~~
raquo
The problem is not in the conflict of interest - other types of insurance work
mostly OK. The problem is that the health insurance companies can somehow get
away from their obligations without being sued to death. Maybe that's because
of vague contracts, or maybe something else. I don't know the exact reason.

------
Alex3917
Thanks for sharing this story. I'm always amazed how much faith Americans have
in their medical system, which seems more-or-less completely unjustified if
you actually look at the statistics. There are multiple problems, too many to
list really, but I think the root of it all is that the medical school system
is designed to choose candidates with zero intrinsic motivation to learn.
That's why the vast majority of doctors can't name a single finding in their
field in the last year, and it's why the average chronic disease takes 8 years
to diagnose. 99% of doctors don't learn or think about anything they aren't
made to by the government. It's pathetic. And sure, the fact that our
government as a whole is super corrupt makes it worse, but really the best
place to start would be throwing out and replacing the entire school system--
which is responsible for both destroying intrinsic motivation, and also
selecting those who have none to run the medical system (and everything else).

------
marze
Best wishes for a complete recovery. A comment: even good physicians often
don't have a good handle on nutritional approaches to wellness, things like
vitamin D/sunshine and vitamin C and the immune system, for example, and
avoiding anti-nutrients. If this is the case with your health professionals,
it might be an area worth researching.

~~~
Shooter
Thanks. I did have a severe Vitamin D (hormone) deficiency and a B12
deficiency, etc. Both are apparently very common with many diseases...more
often as a result rather than a cause (immune modulation, etc.) The Vitamin D
supplementation actually helped with the pain very slightly early on.

------
dmoney
I know someone who was incorrectly diagnosed as having MS but it turned out
(apparently) to be Lyme disease. A couple factoids:

* Lyme tests can often give (even repeated) false negatives. The bacterium can lie dormant or hide. This is why it's a good idea to get a lyme test as a baseline if you're going to be doing a lot of outdoors stuff.

* Most doctors are not educated about Lyme disease, so if you think you might have it, it is important to find a specialist or a doctor who is "Lyme-literate".

Also, how is this not on the front page with 300 points in 17 hours? Flagged
too much?

------
aarongough
Thanks for sharing your story Shooter. It's clear from your story that your
own research had a major influence on your eventual diagnosis, someone less
educated or intelligent would have merely gone along with whatever their
doctors were telling them, so for that I congratulate you!

It's gratifying to hear that you've already had such an improvement of your
condition.

You have my best wishes! I hope that the rest of your recovery goes smoothly
and that the insurance companies don't give you too much trouble!

------
johnnybgoode
Thank you for sharing your story. I hope this serves as a wake-up call to
anyone who doesn't believe that someone can be misdiagnosed many times by
medical professionals.

Perhaps this is related to what marze said, but based on your experience it
sounds like you looked into some CAM approaches (especially from the
documentary you mentioned). If you don't mind sharing this with us, I am
curious to know if the doctor who came up with the correct diagnosis would
fall under this category? Also, your experience with all the different doctors
with their own specialties reminded me of functional medicine, an alternative
approach. (For anyone who is not aware, "Functional medicine reflects a
systems biology approach because it includes an analysis of how all components
of the human biological system interact functionally with the environment over
time. The Institute for Functional Medicine contrasts this approach with an
organ system biology broken down into modern medical specialties.")

Best of luck to you, and I'm glad you now at least know what the problem is.
Not knowing why this was all happening must have made it even worse.

~~~
Shooter
Thanks.

I had to Google "CAM" because I wasn't familiar with the acronym off the top
of my head. The diagnosing physician was definitely a member of IFM...I
distinctly remember a certificate on his wall from them for something. In
retrospect, the IFM-affiliated doctors and the DOs were all more compassionate
and slightly more helpful than most of the 'traditional' MDs. I guess because
they emphasize the more holistic approach/perspective, which is what was
needed. The diagnosing doctor was not a New Age-y, 'alternative' type doctor,
though, in the way people normally categorize them. Too much touchy-feely,
pseudo-scientific stuff makes me nervous.

The documentary I mention mainly contrasts those who believe in chronic Lyme
and long-term antibiotic treatment with those that do not. There is one
doctor, mentioned fairly briefly, that is what I would call normally call an
'alternative' doctor as it has come to be described in the common vernacular.
Long-term antibiotics, while controversial, are not really an 'alternative'
treatment as I commonly think of it...? It's a controversial application of a
traditional treatment. (Even though, frustratingly, they are happily used for
longer periods for things like acne without the outrage.) Maybe I'm reading
too much into the word 'alternative' - it's become a fairly loaded term. In
any case, I do like a more comprehensive approach and am glad I found it.
Otherwise, I'm sure I would still be very ill.

Yes, not knowing what I had was definitely one of the worst parts of the whole
thing.

~~~
johnnybgoode
I agree, "alternative" does seem to have a negative connotation at this time,
maybe because so many things now fall under that term. Thanks for letting us
know the doctor was IFM-affiliated; it's good to know that option is
available.

------
Zak
I've been helping a friend research her medical issues. They're not as severe
as yours, but she's had similar problems with doctors acting as little more
than expert systems with partial data sets and unreliable memories. I was the
first person to suggest an effective long-term treatment for her problem[0]
after a number of doctors failed to come up with anything aside from the well-
known treatments, all of which failed, some making the problem worse.

I'm not sure if there's an easy systemic solution to this problem. Somehow,
doctors need to get in to the habit of _thinking_ and looking at the whole
picture. There's also a tendency for doctors to not listen to patients, which
is exacerbated by a tendency for patients to lie.

[0] The major symptom is menorrhagia, and the successful treatment was
nafarelin, a GNRH agonist. This appears as a standard treatment on websites
updated this year, but I could find no information about its use for that
purpose in 2007.

------
gscott
I have a friend who has the exact same condition, he went everywhere but was
diagnosed with Lymes disease from a local doctor, the heavy metals put her
onto Lymes and it has changed his life. His story is very similar in length so
TMI as well but tom_obrien10001@yahoo.com is his email.

~~~
lyime
My roommate also had similar conditions. He was at the hospital every week.
Always fatigued, extreme migraine, gaining weight, muscle pain and tons of
other symptoms. He was super healthy and just started deteriorating.
Unfortunately and sad ending, He passed away because he overdosed on pain meds
about a year ago.

I wish you the best of recovery in the near future. Thank you for sharing this
story.

------
arithmetic
You are extremely brave. Not a lot of us would go through crap seeing so many
doctors and hospitals without going nuts. I hope you recover completely soon.
Thank you for sharing - somedays I think my life is tough, but these are
reminders that I'm way off the mark.

~~~
Shooter
Thank you for your kindness, but I'm not brave. Guys like Hal Finney - in the
original HN post that I'm ashamed to have drawn attention away from - are
brave. I was just persistent...and then very lucky.

------
david927
Thank you, David, for this. It's a heart-breaking story but it's consoling
that you're now on the road to at least a partial recovery. It makes me
respect the fragility of it all: that it was potentially all due to a single
tick. It's mind-boggling.

------
laktek
Have you consider about Ayurvedic treatment
[<http://en.wikipedia.org/wiki/Ayurveda>]? It's based on the philosophy of
Balancing the senses.

Compared to western medicine, where focus is on attacking the infection and
thereby causing other ailments, Ayurveda treatment will help to keep the
balance of the system, which would be more comfortable.

Just give a thought on it. In this part of the world, there are lot of cases
that were miraculously cured through Ayurvedic treatment.

Hope you will get better soon!

~~~
justlearning
why the downvotes? I don't understand. laktek is making a suggestion.

As someone who has gone thru the whole onslaught of visiting several doctors
for my sciatica plus degenerating lumbar discs - I was told by many doctors in
the US that I am at the risk of being paralyzed . To put it mildly, I was
scared. I then went for 2 months to India(kerala) where they diagnosed my
problem as something that was the result of digestive problems. I had no faith
in the daily treatment; I questioned the rationale of what they were doing(eg-
enema with herbs and medical oil) to morning-medical-castor-oil treatments.
But after 2 weeks, I was not limping.After 3 months, I was walking normal as
anyone. At the end, I was told by the ayurvedic doctors that any more
chemicals(by that they meant allopathic medicine) and my body would have made
slower progress.

I also went thru the insurance drama- doctor 'adviced' me to take an x-ray so
not to get into insurance troubles. So a whole 2 weeks later - I get my mri to
know which of my discs have problem. There was this pain specialist who was so
eager to take me 'once more' to the operation theatre to chip out a part
around the disc(which he did twice). The nerve specialist was another story -
interested in my occupation and annual salary over my pain.

------
nradov
I just heard about a new research study which indicates that some cases of
Chronic Fatigue Syndrome are probably caused by a retrovirus infection. If you
haven't already done this you might want to get tested for XMRV. It seems
possible that could be somewhere in your mix of multiple infections.

<http://www.sciencemag.org/cgi/content/abstract/1179052>

------
dangrossman
I recently saw a demo of a case-based reasoning system (some simple AI) that
diagnosed illness based on symptoms. I have a feeling it would not have had
any idea what to diagnose you with. I'm glad you found the doctor who was able
to get you on a path to better health.

------
jodrellblank
Is there any software or standard methods for helping to keep track of
symptoms, tests and hypothesis and identify causes of problems, when there are
too many symptoms and too long a time period to hold it all in working memory?

------
tptacek
Were you able to keep working?

~~~
Shooter
No. I had to stop working for some time, including resigning from all advisory
and board roles. I was basically an invalid for a couple of years, and
operated in a very diminished capacity for several years beyond that.
Fortunately, I had a few successes with startups previously and still had
enough equity/income without working to survive. My wife also has a good job.
I was very lucky.

------
elai
If the financial aspects become too much, I would highly recommend doing some
"medial tourism" to panama, costa rica, thailand or somewhere similar to get
the treatment you need at a significantly lower price.

------
ramanujan
> My wife is pregnant with out first child, and everyone is scared/nervous how
> I will handle it.

I hate to ask this, but as an infectious disease that could be spread by a
tick bite, isn't it potentially communicable?

~~~
Shooter
That's actually a really good question, although the answer is controversial.

There is great debate about whether any/all of these diseases are
communicable, especially Lyme (because of its prevalence.) Anecdotally, there
are many doctors who argue that they _are_ based on their own patients, and
there have been a few medical studies that have also shown that they _are_ ,
but the status quo maintains that they are _not_. Even though syphilis (which
is caused by a very similar, but less insidious, spirochete like the one that
causes Lyme) is _obviously_ sexually transmitted, the insurers and their
cronies say it's impossible. There is a woman in the documentary I mention
that battles with that issue (and miscarriages) and you can also find
information online. In my case, my wife had no symptoms, we had her tested for
some of the scariest bugs, and we took some other precautions.

------
ajju
Sounds like a terrible ordeal. Thanks for sharing and good luck with the
treatment, getting better and the baby!

I am really curious to find out who "Dr. House without the attitude" is. Mind
sharing?

~~~
Shooter
Thanks. Sorry, but all of the doctors - both good and bad - must remain
nameless. Some specifically requested privacy for obvious reasons (targeting
by insurance companies, etc.) The final diagnosing physician isn't nationally
prominent, to the best of my knowledge. He was just recommended to me based on
a regional reputation (my wife and I have both worked in healthcare. She still
does.)

If someone thinks they may have some of these infections, I would be happy to
refer them privately to doctors I'm familiar with that treat them...or to
organizations that can provide assistance. Otherwise, I don't want to bring
any doctors unwanted attention.

------
hristov
That's an interesting story. Sorry about all your troubles, but you seem to be
handling yourself well and you have a family so it is not all that bad.

It's a shame about the insurance companies.

------
gorm
Thanks for the post. Hope you get better soon!

------
maxklein
Did any doctor ever say it might have been lupus?

~~~
Shooter
Yes. Several. (And I, of course, shouted, "It's _not_ lupus. It's _never_
lupus!") Seriously though, lupus and rheumatoid arthritis were some of the
early diagnoses. Autoimmune stuff often fits the bill in these complex, mult-
symptom cases. That's why it (and a few other diseases) make an appearance on
almost every episode of House as a possible diagnosis.

------
ahoyhere
Holy crap. All I can say is: I'm sorry. You have my sympathy.

I too have had problems with lazy, blinkered, doctors and "recurring" multi-
faceted infections, but my experience is a cakewalk compared to yours.

I wish you the best, and applaud your strength (and your wife's), and thank
you for sharing your story.

Oh, and one potential tip... have you checked out the public plan in states
like Maryland? AFAIK, Maryland is one of the few states with good public
plans. They aren't cheap (the best one costs almost $300/mo for an
individual), but from my experience, they cover EVERYTHING. A broke friend of
mine got on the plan for 2 mos to get his hernia fixed (he was 25! nobody
would cover him, even if he had the money), and they fixed it. No pre-existing
condition BS.

The only thing you have to have to qualify is being denied coverage in the
past 6 mos. You may qualify, based on what your insurance co. is doing to you.
Certainly if you applied for other coverage, they would deny you.

I hope you are able to continue recovering and that you don't have to deal
with too much more bureacratic bullshit.

------
bprater
Possible to get a compressed/TLDR version?

~~~
tigerthink
Shooter was probably bitten by a tick that carried a ton of diseases. Most
doctors didn't believe that any one person could have so many symptoms, and
treated Shooter's individual symptoms instead of trying too hard to figure out
what was wrong with him. Finally one doctor figured it out. Shooter is slowly
getting better.

~~~
aw3c2
Thanks. Now who is Shooter?

edit: Before I get downvoted because of emotional responses I want to clarify
that I really have no idea who Shooter is and neither do I know about the
relevance for this site.

~~~
Shooter
I'm nobody, dude. I put my username in the title because I was asked a
question in another thread and couldn't think of a good title for my long
answer. Sorry for the confusion.

~~~
ErrantX
Your not a nobody for certain. I'd say you were an Everyman. :)

<http://en.wikipedia.org/wiki/Everyman>

Nobodies dont speak up about their experiences.

------
amih
Congratulations on the baby, If you're afraid of passing out while holding the
baby - you can do it in a safe place like sitting in a sofa.

On another issue - research on 811 raw vegan or juice feasting. Nutrition can
have a great impact on your body and you can support your immune system by
feeding your body nutritious meals instead of burdening it with hard to digest
cooked food.

Check out bee pollen and raw honey. From personal experience I can tell you
that 10 days of 2 to 3 liters of apple and carrot juice a day really improved
my energy levels.

------
justlearning
I think this note deserves a posterous page - whether you add more stories or
not. Just for it's online presence prominence.

imho, you putting your story on the web will help many who are at the initial
misdiagnosed stage.

if you don't, I am going to do it (and put your email in the contact). I don't
know if I am threatening you or pleading wit you. But please create a
posterous - copy the content and email to post@posterous.com.

Edit: of course - i won't do it. it was just a push for Shooter to do it. I
would email him if at all I decide.

~~~
mattyb
_This post is both personal and medical in nature..._

Posting this story elsewhere is something only Shooter should do.

~~~
johnnybgoode
Also, HN seems to have excellent PageRank.

------
jsteele
You should definitely try fasting (no food, water only). After a couple of
days there should be visible results (You will feel Yourself different).

Another possible advice is to limit carbohydrates (partually replacing them
with fats). There is a whole host of possible problems from excess
carbohydrates (starting from diabetes, high blood pressure and overweight).

Your health is in Your hands, the doctors can only help if You are fighting
disease Youself.

~~~
amih
I agree, you've been very proactive and persistent in finding the root cause,
why not go ahead and experiment. Of course you should read more about the
subject before starting human trials but you have an enormous advantage over
the establishment, you are allowed to conduct experiments in humans! At least
on one human - you. Fasting for a few days and drinking only water is a great
way to let the body heal itself and the worst is that nothing will happen.

