
Save My Life - help a fellow HN'er - savemylife
http://savemylyfe.blogspot.com/
======
SkyMarshal
Test for Pernicious Anemia that prevents the digestive system from absorbing
Vitamin B12:

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

I had a friend go through something very similar a few years ago - almost
exact same symptoms, steady relentless degeneration, multiple ineffectual
doctors and most of the incorrect diagnoses you list above.

Finally one doctor figured it out - Pernicious Anemia. It prevents stomach
from absorbing much needed Vitamin B12, which was the cause of most of the
degenerative, incapacitating symptoms.

She started taking daily B12 shots to compensate, since there was no other way
to get B12 into one's body. That completely solved the problem, cured the
symptoms, within a few weeks she was back to her normal 110% self.

The doctor that finally figured it out noticed neuropathy in her extremeties -
muted or complete lack of feeling in her hands and feet, and that clued her
into the possibility of PA.

~~~
mistermann
Just curious, should a lack of B12 not show us in a simple blood test of some
sort?

~~~
flatline
Yes but someone probably needs to request it specifically. My first thought
was that he should try B-12 shots as well, they are cheap, their effects are
nearly instantaneous, and you can take shitloads of it without any problems.
Unfortunately they are prescription only in the US, you can get them OTC in
Mexico.

~~~
rjett
"...they are prescription only in the US"

Aren't 5 hour Energy drinks just a shot of B12?

~~~
machrider
If the problem is absorption in the stomach, then _drinking_ B12 isn't going
to help.

------
jacquesm
When I read your list of symptoms before reading on to the list of stuff
you've been tested for my first reaction was Lyme disease, my ex-wifes brother
has it (he's a forester in Poland and got it through tick bites which are
something of an occupational hazard).

And you list in your later writing that you test positive for it, now, one
thing about Lyme disease is that if it is untreated it is steadily
progressing, he's under a pretty strict regime which basically puts him in
hospital periodically for blood treatments.

Please re-consider this option because it rings all too familiar.

Have you had any (infected) tick bites when you were in your 20's (probably
hard to remember from that long ago...) ?

~~~
gfodor
With Lyme, if you take antibiotics (presumably Augmentin or something that
will target the bacteria) you will get a Herxheimer reaction that will
basically put you through a severe series of reactions such as joint pain,
migraines, and other flu-like symptoms.

Provided the OP was on antibiotics that targeted Lymes, I'm skeptical he has
it because the effects would have been profound. (Ie, he would have been in
major suffering soon after starting the antibiotics.)

That said, there are a few relevant questions in regards to this:

1) What antibiotic was the OP put on in response to the Lymes diagnosis? If it
was not a one that the disease is sensitive to, then he may have it and it
simply was not being affected by treatment.

2) If he was taking a Lyme-sensitive antibiotic, what were the effects? Did he
feel worse when taking it? If so, this might be an indicator he in fact has
Lymes, since it can take months or years of suffering through treatment to
cleanse the body of the bacteria, which will fight back throughout.

3) Was the OP diagnosed through a Western Blot test? A Western Blot test is
the best way to be sure of the presence of Lyme. Other tests are less
effective and have higher false positive/negative rates.

I'm not a doctor, but have friends and family with advanced cases of Lymes who
have gone through years of suffering due to not catching it early. I hope for
the OP's sake he doesn't have it, because treating it will be a long and
painful process due to the long time it's had to embed itself into his nervous
system.

~~~
jacquesm
There are pretty hardy variations of the disease that may not respond to a
regular treatment, quick link that I dug up:

<http://www.canlyme.com/antibiotic_resistance.html>

Probably there is more information to be found elsewhere about this. The OP
should definitely seek out a specialist on this and not rely on a general
doctor, this is a very insidious disease and letting it go untreated (if this
really is it) will have dire consequences.

On another note I'm surprised at the authority with which some pretty bad
advice is given in this thread.

Second everything you wrote above, it matches the experience in my family
exactly.

------
grandalf
I suggest the following:

\- Go to the rural coast of Costa Rica

\- Every day spend an hour or two swimming in the ocean, surfing, etc.

\- Eat only fresh tropical fruit, beans, and rice w/ no added oils, etc.

\- Try to run 15-45 minutes per day.

\- No coffee, tea, alcohol, etc.

\- Minimal sunblock, deodorant, etc.

\- Drink > 1 gallon of water each day.

\- Do 30 minutes of yoga per day.

\- Read for pleasure for 30 minutes per day.

\- Plan nice projects/surprises for people you care about. Spend 20 minutes
per day thinking about these plans.

Follow this for 3 months. The food will cost < $2 per day and lodging may cost
$10-15 per day if you live like one of the locals.

It's your life. Follow these instructions to the letter and I suspect you will
feel more healthy and vigorous than ever before.

~~~
Vivtek
I think I'm feeling somewhat in need of this cure, too...

Actually - how _does_ one go to the rural coast of Costa Rica? Do you have any
information about that sort of thing?

~~~
hyperbovine
For about $20 a day all inclusive (shared dorm + 3 square meals) you can
volunteer in their national parks for pretty much as long as you want. I did
this two summers ago and it was fantastic. At night you pretty much have the
whole place to yourself. Highlight was sitting on a bench watching the moonlit
Pacific ocean and having an ocelot walk right by me.

------
jimmyjim
Also try asking this in r/askreddit, besides having a generally larger
userbase than of HN, I've noticed it also has more guys specializing in
medical-related fields.

~~~
eliot_sykes
Yes definitely try Reddit, remember a post a few months back where someone
needed medical help and Reddit made a big difference

------
Vivtek
If you want to crowdsource, obtain all your lab results that have ever been
done, scan them, and post them. Those medical records belong to you. Black out
your name if it worries you. (Edit on afterthought: if you're considering
doing more tests and if your insurance situation is poor and if you're
American, look at personalabs.com, who will order your labs from LabCorp
nearly anywhere in America at just a little above cost - the difference is
almost certainly going to be huge, and if the doctor isn't helping you, it's
good to know you're not locked into getting the doctor to order labs for you.)

That said, it's pretty clear there's something funky immune going on - the IgA
thing, the initial response to Vitamin D (and I second or third the
recommendation to get sunlight - go for a walk every day; it'll do you general
good anyway). You've got some weird digestive stuff going on, and so _my_
personal red flag goes up, which is intestinal flora.

(Note also: tracking this stuff down is going to be a personal struggle, it'll
take years, and there is a truly immense amount of bullshit in the world, so
take nothing I say, or anybody else, without a large helping of skepticism.)

My daughter has Crohn's Disease and my son has minimal change disease (a
kidney inflammation). After my daughter was hospitalized, we did a lot of
research and found out what amazingly bad things can happen as a result of
poorly managed intestinal ecology, and after making changes to our diet - some
of them pretty profound - she's been symptom-free for three years, our son is
improving, and I've lost weight as well.

So here's what I recommend: go to your pharmacy and purchase some sachets of
"VSL #3", a probiotic mix. Don't follow the instructions on it; use it as
yogurt starter. Yogurt is dead easy to make; get one half-gallon of organic
whole milk, one quart of organic half-and-half creamer, mix a cup of plain
Dannon yogurt and one sachet of VSL #3 into them as a starter, put it into a
gallon glass jar (available from Walmart) and put the whole thing onto a
candle warmer for 24 hours wrapped in a towel.

After 24 hours, you'll have three quarts of the most electrically sour yogurt
you've ever tasted. Eat that twice a day for a while. If you want to get
serious about this cure, take a couple of weeks and don't eat any complex
carbs (that's way harder than it sounds). If you've really got an intestinal
flora imbalance (you're presumably American, so you do, trust me) and if
that's your root cause, you'll feel better in a week. You'll probably feel
somewhat better in a week anyway, but there might be more going on.

That's my two bits. I applaud your effort to take your health in your own
hands, and if there's anything I can help with, get in touch (email's in my
profile).

~~~
savemylife
Vivtek, thanks for the thoughtful reply. That's great that your daughter has
shown such an amazing improvement. I actually tried the pro-biotic, anti-
candida route about 10 years ago. I remember eating lots of Stonyfield Farms
unsweetened yogurt. :-) Was great for losing weight, but not much else in my
case.

You're right that logging and tracking is very hard. It seems cruelly unfair
that brain fog is such a factor, since that makes it impossibly hard to figure
out what might be wrong, and what to do to fix it. I've tried so hard to find
a pattern.

Owing to my fatigue, I must admit that eat a lot of prepared foods. But
generally they are the healthy ones- Healthy Choice, Lean Cuisine, etc. Well,
as healthy as a box of frozen food can be, anyway.

I do try to get sunlight, but it seems to have a paradoxical negative effect
on my now- I feel even sleepier if I take an noon walk.

~~~
fleitz
Have you checked Vitamin B levels? My friend has very similar problems that
are solved by getting a B12 shot. She has to get one weekly as her gut cannot
absorb it. It's probably easier to just get the shot and see if it helps.

~~~
mirkules
I'll second the B12 shot -- it's a very simple treatment, and if it doesn't
work, no harm-no-foul. Check out the symptoms of B12 deficiency:

<http://en.wikipedia.org/wiki/Vitamin_B12_deficiency>

~~~
mirkules
I just showed this to my friend who is a doctor, he says:

\--- quote ---

It's a possibility of pernicious anemia, which would cause B12 to be low.

It's an autoimmune disease which he has a predisposition with Hashimoto's.

He should get a complete blood count with differential, Serum Vit B12 level,
Anti-parietal cell antibodies, Ant-intrisic factor antibodies and
Methylmalonic acid level.

Also he should probably go to a hematologist or immunologist as they are more
likely to think of this diagnosis.

\--- end quote ---

He says it's impossible to diagnose without seeing the patient, and without
seeing the bloodwork, etc. So, go get yourself checked out by someone who is
familiar with this disease.

Best of luck to you.

Edit: I noticed that someone else said the same thing below. Nonetheless, hope
that something here helps you.

------
thaumaturgy
People can't solve problems like this one without experience in the medical
field, which you're unlikely to find here.

That said: your description of symptoms has all of the hallmarks for an
autoimmune disease. So, I assume you've had extensive blood workups done? What
are your antibody results from them? Your lymphocyte counts? How's the iron
content in your blood?

You also mention sensitivity to heat. What's your average body temperature
like? Is your urine clear, yellow, dark? (signs of dehydration)

You're missing many of the specifics that I would expect from a post like
this, targeted out a community like this one.

~~~
frossie
_People can't solve problems like this one without experience in the medical
field, which you're unlikely to find here._

Can I stress this? This person doesn't need medical advice from HN. What he
needs is to keep seeing specialist doctors until he can find one that can
diagnose him correctly. Dealing with the medical profession, especially in the
US, takes a lot of energy that a person in this state does not have.

So instead of trying to guess at his disease, why don't people brainstorm the
issue of how to get access to more doctors?

Here's one to start the ball rolling: hire a part-time personal assistance and
make it _their_ job to get you medical appointments. Okay, that's a possibly
unrealistically expensive suggestion, and I am sure others can do better.

~~~
ptn
_This person doesn't need medical advice from HN. What he needs is to keep
seeing specialist doctors until he can find one that can diagnose him
correctly_

He's been doing that for 18 years, it's natural to try something different.

~~~
frossie
_He's been doing that for 18 years, it's natural to try something different._

The likelihood of him not having found the right doctor vastly exceeds the
notion that he can get a diagnosis on HN. Of course I certainly don't blame
him for trying - but, really?

I am actually rather shocked that here is a person who basically says "I have
this horrible disease and have trouble thinking straight" and people think the
appropriate response is to suggest diet modifications.

From reading his account, I can see two conclusions: (a) he has not found the
right doctor or (b) he is incurable. There is no point contemplating the
latter, so the only recourse I see is helping him somehow get to the former.
He needs a doctor who will take ownership of his issues, he needs a teaching
hospital, he needs House MD - I don't know - but he needs help to keep trying
doctors, not guesses at a diagnosis.

I'd be delighted to be proven wrong.

~~~
silencio
Why is it not worth a shot to ask? I wouldn't necessarily ask for medical
advice nor follow it, but there'd be that small chance someone else would know
something worth pursuing with my doctor (like what seems to have happened in
this topic).

For about 6 months on end this past year I had a laundry list of respiratory
issues that several different doctors I went to couldn't figure out the root
cause of. All anyone could do was to deal with the symptoms, try to come up
with some kind of diagnosis, and hope that it'll fix whatever was going on. I
was on at least half a dozen different meds ranging from a monthlong course of
Levaquin to prednisone and nasal sprays and more at any given time, and of
course none of that stuff would do _anything_ about a nasty, persistent cough
that would never go away (great timing with the H1N1 scare!).

So after too many xrays and ct scans and blood tests and blowing into things
and who knows what more, I was really fed up. I had been to all sorts of
specialists, general practice, even my dentist (sinusitis at some point, had
to rule out anything to do with my teeth), and everyone was out of ideas. It
was wrecking my relationships with some clients who thought I was giving them
the flu, it was preventing me from even climbing up a flight of stairs on a
bad day, the cough was bad enough that I'd wake up multiple times during the
night, everyone and their mother thought I had a cold or the flu or $deity
forbid H1N1... I was on the verge of crying when I was waiting for a flight at
an airport when some woman that had sat down next to me decided standing up
and away from me was preferable to being next to me coughing into my elbow
away from her. And I didn't have anything contagious at that point. :/

I bounced ideas off some friends, I ranted on twitter and irc, went to one of
the doctors suggested by someone I knew, and after mixing that all together, a
specific combination of a few meds solved _every problem I had_. A little
ridiculous to think about in the end, but my limited crowdsourcing worked for
me. Even with the complete lack of domain-specific knowledge, it was a bunch
of fresh pairs of eyes thinking things in their own way as I and all my then-
doctors had started to become one with "we have no idea what's going on".

However, had any of my doctors pulled a House and ditched some choice
assumptions about what happened with "99% of [their] patients" that had any
one of my issues or "what happened in [my] medical history", I probably would
have been much better off earlier. But I eventually (mini-crowdsourced and)
met my House that assumed my medical history is tantamount to a lie and
started with a blank slate. What everyone had assumed was the effect was a
cause, where it was assumed something would work because it worked in the past
was proven to be wrong, and now I'm here, minus most of the problems I had
back then and managing the problems I can manage, happy and reasonably healthy
today :)

~~~
ahoyhere
So what was the effect/cause??

I've had a continuous problem with sinus infections which always turn into
bronchitis if untreated, which means I'm constantly on antibiotics, surgery
barely helped, and last summer I tried to "heal myself" without antibiotics --
just for once -- and was doing fine for 1 month while exercising daily and
sinus rinsing etc, etc, and after I took a 2-day break from exercise, I got so
sick I thought I had pnuemonia, had to go to the emergency room.

I haven't been well since. I am always tired, wheezing, etc., that yes,
doctors keep trying to treat as surface issues, with steroid inhalers and nose
sprays (that I can't take because I'm extremely sensitive to steroids).

Haven't found a doctor yet who will really look at the whole history and
figure out why I am like this now, as opposed to just treating the individual
symptoms.

I'm at the end of my rope, too…

~~~
silencio
Ouch, I feel your pain.

I had multiple bouts of bronchitis and pneumonia and sinus infections and
probably a cold or two and sometimes at the same time. Those were definitely
diagnosed and treated as they came, but I had an underlying cough that would
not go away. Everyone blamed the cough on lingering effects of the bronchitis
and blamed the runny nose on the sinus infections and general breathing
problems on the fact that I had just had (insert infection here)...so everyone
treated that and just gave me way too much narcotic cough syrup so I can sleep
at night.

What it really was was that I had all of those, but they weren't as severe or
as lingering as everyone thought it was as the runny nose was primarily from
allergies and cough from asthma that I thought I had "grown out" of years ago.
Mind you, some of the drugs to treat the symptoms were still the same, but
everyone was so focused on the obvious and on the past (that I had had asthma
and it was successfully treated with primarily Advair) that nobody thought to
realize that maybe, just maybe, it was back and triggered by something and
that all these issues were also overblown as a result, and the same drugs
wouldn't necessarily work this time around. Someone at some point suspected
the right thing, but Advair used to work for me, and it didn't work this time
around, and more than one had put me on prednisone at some point or another
and that should have done _something_ but it didn't make a big difference
either, so that came and went off the list a couple times. On the flip side,
they weren't so cavalier about antibiotics, as I kept on getting switched to
new ones as the old one would either stop working or wasn't effective after a
few days.

So with a fresh slate and with not making assumptions based on even as-recent-
as-a-week-ago past, my House thought the infections were related (had enough
antibiotics and more to mask the symptoms, but probably not gone altogether)
and that my asthma was probably back and bothering me at the same time since
if he ignored all the symptoms clearly and only associated with my infections,
it was exactly asthma, rather than shoehorning that into "oh it's because of
the bronchitis" cause that's what happens to "most people". In the end, one
month of Levaquin seemed to work to obliterate my then-sinus infection, and
the rest of it disappeared into thin air when I started a combination of
Symbicort, predisone, Xyzal and Astepro. Unfortunately I doubt that would work
well for you as half that are steroids :S

Soooo...I know when I had the sinus infections from hell, my neti pot was my
best friend (every hour, if I could get away with it...), but I don't have any
suggestions beyond that :( My story is more of a "people made assumptions and
they were wrong about something so obvious" than a rare/hard to diagnose one.

~~~
ahoyhere
Thanks for sharing your story.

Unfortunately, you're right, what helped you couldn't help me... I can't take
Advair (although it kinda helped), because of anxiety attacks and
hallucinations. I also can't take Levaquin! I took it once 5 years ago for a
sinus infection, and had to stop in a couple days, because of stabbing pains
in my ankles and elbows. Did you know that one of the side effects is listed
as "tendon rupture"!? I panicked and stopped taking it, the doctor later
agreed, but the pain lasted for _weeks_. So scary.

And I was a thin girl til I got an extremely rare side effect from a birth
control shot called Depo Provera. They only put it in the literature years
after it wrecked my body.

I'm screwed :)

EDIT: My complaint about the asthma is actually the opposite of yours. My
doctors want to treat it as simple asthma, when I hadn't had symptoms for 12
years, until my misguided attempt to avoid antibiotics completely knocked me
on my ass for 6 weeks.

~~~
silencio
The side effects of Levaquin still haunt me, despite having had none of them.
It's been months, and I've heard stories about these issues appearing out of
nowhere months later...still waiting for the tendon rupture to happen, heh.

I'm a girl too, and I avoid any suggestion of depo provera like the plague. I
love the idea of the convenience (I am _so_ bad with regularly timed pills,
and am on nuvaring now), but the common issue of bone density loss alone
steered me clear away, I can't imagine what happened to you :(

Honestly, I'd just consider getting multiple opinions. The surgeons will tell
you to think about surgery, the various specialists will focus on your issues
as it relates to their knowledge...no fault of their own, but finding the
right person makes a huge difference. Good luck!

~~~
ahoyhere
Wow! I had no idea those side effects could last so long. Maybe that's behind
my sudden spraining of both ankles that happened months later? I'd always had
floppy ankles, likely to fall over, but never really hurt myself when I did…

You're smart to avoid depo provera. I hope you encourage your friends too, as
well. I didn't have any of the terrible side effects known at the time (eg.
permanent bleeding) but I got glucose intolerance, which causes the body to
respond crazy-like to carbohydrates of any kind, and caused me to gain weight
no matter what I did.

I kept telling the docs, "Something is wrong!" and them saying "No, it'll even
out, it's fine." or "Your appetite is just increased," even though my
boyfriend backed me up that it was not. Jerks.

And of course the combination of depo+weight gain made me depressed and
mentally foggy, and even less likely to advocate for myself, a nice one-two
punch.

I gained so much weight, so fast, over 2 years, that my skin looks like a
white-on-white zebra. I'll never look good in a bikini (even if I do manage to
ever lose it all, which doesn't seem likely).

------
chasingsparks
_When you hear hoofbeats behind you, don't expect to see a zebra._

This aphorism is taught to doctors in training. It's like Occam's razor for
the medical profession. It's not a bad heuristic, but it necessarily leads to
a somewhat terrifying error rate when diagnosing people who actually do have
the rare diseases.

I'm not saying you do have a rare disease, but if there is something wrong
with you and you've been to many many doctors, it seems more likely than a
common disease. I had a rare type of cancer and was misdiagnosed for a year
prior to correct diagnosis.

My advice: browse through <http://www.rarediseases.org/search/orglist.html>
and see if anything stands out, then demand someone test you for it.

~~~
savemylife
Thanks, I didn't know about that list. (I feel slightly dangerous knowing it
now). That's kind of the story of my life though- self diagnose (sleep apnea,
lyme disease, etc), and then have to fight the doctors to get tested.

~~~
Vivtek
Oh hells yes. This describes our past decade. Keep in mind that you can,
eventually, figure it out.

------
rit
To be careful giving medical advice, and not sounding like I'm a holisitc
nutjob. This is completely a personal experience and YMMV...

I have Hashimoto's Throiditis as well. I've spent ~15 years struggling with
Synthroid - constant sensitivity to heat & cold, exhaustion, etc. I went
through constantly fluctuating dosages, etc. My doctor tried mixing Cytomel in
which helped a bit but not completely. I've had a lot of trouble with other
synthetic drugs in the past (I don't seem to metabolise them well) and
switched to "Natural" thyroid (quite literally dessicated thyroid gland from a
pig - it contains the exact hormones the thyroid can't make with Hashimotos).
It has made a HUGE difference for me. There have been some supply problems in
the last ~12 months which seem to have smoothed over (It's available in a few
brands - generic is I think just "thyroid", there's also Naturthroid and
Armour).

I am not a doctor, and by no means a homeopathic nut - in this case the
difference between this and Synthroid is it's an exact copy of the hormones
you need rather than a synthetic analog (before Synthroid came around, for
~100 years this was the standard thyroid treatment). It has made a big diff
for me after years with no luck.

It may help - in the last year I've had a big improvement from switching
(weight loss, sleeping better, etc etc).

------
savemylife
OP here. Wow, just wanted to say thanks for the hundreds of comments and
emails. I'm touched (and a bit overwhelmed!) by the response. There are so
many suggestions that it's hard to know where to begin. I'm trying to sort
through the many responses and do some triage. I've already been down a number
of paths that have been suggested (not to discount them, but I'm trying to
maximize my chance of finding a solution, and not just go in circles).

At this point I really do feel like I need a good doctor to help manage this,
and would really appreciate tips for a doctor in or near the Cleveland area.
Thus far I haven't had much luck in that department (example- I have an
appointment with an Endocrinologist at the Cleveland Clinic coming up- in
OCTOBER!) My current doctor is now balking at my requests for various tests,
so it's time to move on. Recommendations really, really welcome.

Thanks again everyone, you guys are awesome.

------
foenix
This all sounds very much like a pituitary problem: this gland in your brain
may be damaged and responsible for all of your drastic symptoms. If you
remember from bio, the pituitary gland is the "master gland" of all of your
other endocrine systems.

I'm only basing this on what you mention on your blog; I see that you haven't
had any serious brain-imaging (avoid a CAT scan and go straight to an MRI/MEG
if this is an option).

I imagine your Hashimoto's Thyroiditis may be directly related to a pitutary
problem as well.

What really sets me off are your reports of incipient-response prevention: the
"flinging" of objects may be due to a loss of inhibitory neurons.

Any brain-damage would be related to your other sensory symptoms (intermittent
deafness, motor coordination, working-memory-loss).

I am not a doctor, just a cognitive science student, but your case reminds me
of a lot of neuroendocrinpathology case studies. If you or your close friends
have noticed an extreme personality change, then I would consider this a
silver-bullet for getting your head checked.

Best of luck to you — I hope the prognosis is more optimistic than whatever
diagnosis this ailment turns out to be.

~~~
savemylife
I did in fact mention MRIs, but only as regards ruling out MS. If it matters
any, the "flinging" aspect comes and goes. Every once in a while I'll have
that rare day when I actually have some dexterity in my hands, and it's
amazing. Sadly, doesn't happen very often. It's at least cause for me to be
hopeful that whatever it is, it might not be permanent.

Thanks for your reply, foenix.

~~~
carbocation
Just fyi, if you had a cranial MR that was at high enough resolution to detect
MS lesions, you'd most likely also be able to detect pituitary lesions.

------
rksprst
You might want to see if you have Celiac Disease. It would fit the symptoms
you describe about indigestions and I believe could lead to being tired and
lack of energy.

Learn more here: <http://en.wikipedia.org/wiki/Coeliac_disease>

You can easily test this out by not eating gluten for a few weeks and see if
things get better.

Also sent you an email.

~~~
savemylife
Thanks rksprst. Aren't Celiac Disease sufferers usually thin, unable to gain
weight? That's not me.

~~~
jerf
I wasn't.

Celiac is a really wild disease, in that it can cause an enormous variety of
symptoms due to the nutritional deficiencies it can cause, and also can _fail_
to cause them just depending on your own body. Consequently, it is really
difficult to diagnose. My primary symptom was iron-deficiency anemia, for
instance, but the traditional answers that start with that symptom would have
been wrong. Also, despite malnutrition, I was also obese. (Not "clinically
obese", but obese no matter how you slice it.)

There are two things going for this diagnosis (even as I tip my head to the
"don't trust internet diagnoses" crowd). First, per chasingsparks' excellent
point, you shouldn't look for something rare when something common may explain
it. In fact, Celiac is not a rare disease; estimates are now hovering around
the 1 out of 133 people in the general US population, which is not really a
"rare disease". The odds of at least one other person reading this message
having Celiac without knowing it is actually virtually 100%, because of the
second thing: It is _known_ to be underdiagnosed due to the difficulty of
diagnosing it correctly. It appears to match everything you've described, up
to and including a known correlation between Celiac and other autoimmune
diseases (especially when left untreated) and raised IgA. Testing for IgA is a
standard first step of a screening:
[http://www.labtestsonline.org/understanding/conditions/celia...](http://www.labtestsonline.org/understanding/conditions/celiac-2.html)

With this you should be able to find a doctor who can help you confirm or deny
this diagnosis, assuming you have not yet tried a gastroenterologist.

If there are money issues, the "don't eat gluten" test rksprst mentions is
actually as good as the medical tests, if not better. Stop eating gluten for
two weeks, or preferably three. If you feel better after that, then you may be
on the right track, but wait, it might be placebo. To be _really_ sure, have
yourself a big ol' bowl of pasta or pizza. In about 5-7 hours or so, if you're
suffering from Celiac... _you'll know_. And I apologize for that night. But at
least you'll know after that.

Be aware you can not do both. Celiac tests only pick up "in progress" Celiac,
if you cut out the gluten for three weeks, _then_ go to the doctor, you will
quite likely test negative even if you have it.

At your age, full recovery could take 3-4 years, but you'll start feeling
better right away.

I feel your pain. My father was diagnosed in the nick of time for me to figure
out what my problem was. I too was starting to lose enough cognitive power
that I fear I would have lost my job.

Edit: Also, if this does turn out to be the problem, start taking a
multivitamin. Many people say that multivitamins are not helpful for normal
people. This may be true, I honestly don't know. Celiac is not "normal people"
and I've found it helpful well beyond what "placebo" would cover. You may be
able to stop when recovered, I'm just barely getting to "recovered" myself.

And yes, this could be me having a hammer and seeing a nail. Still, it does
fit, right down to the difficulty of getting it properly diagnosed.

~~~
whimsy
>Stop eating gluten for two weeks, or preferably three. If you feel better
after that, then you may be on the right track, but wait, it might be placebo.
To be really sure, have yourself a big ol' bowl of pasta or pizza. In about
5-7 hours or so, if you're suffering from Celiac... you'll know.

This. A friend of mine is a celiac and didn't know throughout high school; she
and her family simply thought she had a very weak immune system since she was
sick so often. (In fact, she often ate crackers to calm her upset stomach,
which obviously exacerbated the problem.)

To clarify, though, the big bowl of pasta comes after the three weeks of "no
gluten." If you're suffering from Celiac disease, as jerf said, once you take
in a large amount of gluten after going gluten free for three weeks, _you will
notice._ It will be like night and day. If you feel fine after that pasta,
you're not a Celiac.

I'm not a doctor, but this is a pretty clear cut test.

------
Ixiaus
Sounds like Chronic Fatique Syndrome to me.

My advice: cut simple carbohydrates out of your diet completely (veggies and
animal protein only) and start exercising as much as your fatigue allows you.
Read this book too: [http://www.amazon.com/Body-Science-Research-Program-
Results/...](http://www.amazon.com/Body-Science-Research-Program-
Results/dp/0071597174/ref=sr_1_1?ie=UTF8&s=books&qid=1275514841&sr=8-1)

~~~
carbocation
Chronic fatigue doesn't give you Hashimoto, and it doesn't give you a
gammopathy. My point is simply that if there is a unifying diagnosis to be
had, CFS is not it. (Though I am absolutely aware of Saint's Triad, so if
that's what you're going for, I understand.) If you really suspect chronic
fatigue, consider talking to someone at the Whittemore Peterson Institute in
Reno, NV. (Disclosure: Am friends with one of the authors on their paper that
identified that a high proportion of those with CFS harbor a novel virus. This
research is not in my field.) NYT write-up:
[http://www.nytimes.com/2009/10/09/health/research/09virus.ht...](http://www.nytimes.com/2009/10/09/health/research/09virus.html?_r=1&hpw)

But truly, I am discussing this because I find it interesting per se, though I
feel it is a bit of a side track.

~~~
Ixiaus
Good reply, I don't know too much about the ins and outs; just layman reading
and anecdotal experience. I remember being chronically fatigued (though it was
not Chronic Fatigue Syndrome) for quite some time; what did the trick for me
was simple: less carbohydrates (less calories, to be specific), more
vegetables, and more animal protein (the Paleo Diet mixed with the Longevity
Diet).

I also think people underestimate the body's ability to repair itself given
the opportunity. I think fixing the diet and exercising would be worth while
avenues of giving the body the break it needs. I've also been a big believer
in fasting and/or juicing for a few days when I get sick, it seems to get
wiped out much faster when I do that.

I notice, when I eat grain heavy foods (rice, and particularly wheat based
foods) my allergies get worse and I feel "ickier". This correlates well with
the description of Candida Albicans and the invasive behaviors the organism
take on it, apparently, even makes you want to eat more bread (this is,
unscientific, but it seems logical and has served me well thus far).

Something else I noticed as well: fatigue was often fixed/alleviated by
consuming adrenal supplements...

------
jmintz
Have you ruled out Lupus and other autoimmune disorders? A relative of mine
has some of the same symptoms and has determined it is an autoimmune disease.
One of the few things I know is that they can be very hard to diagnose. I will
get their advice and pass it along. They have flown all over the country
visiting a myriad of doctors and finally found a good one at the Cleveland
Clinic, so at least you are close to good medical care.

~~~
savemylife
I can't say that I've been tested for Lupus, but I've had a battery of tests
from an endocrinologist (well, a few of them, actually). He found only
Hashimoto's Thyroiditis, which supposedly is under control according to my
bloodwork, and an "elevated IgA", whatever that means. A difficult aspect of
this is being so brain-fogged that I have a hard time even remembering what
I've been tested for, or what any of it means.

I can practically walk to the Cleveland Clinic from here, so I'd very much
appreciate getting a reference to a good doc if you know of one (the one I saw
there wasn't that helpful).

Thank you, jmintz.

~~~
jmintz
I am wracking my brain to try to remember these conversations from a couple
years ago, but I am pretty sure you can't test for Lupus if you have
Hashimoto's (and it's pretty hard to test for Lupus anyways). They just
eliminated so many other things that they started treating them for Lupus and
it helped enough they decided that is what it was. I will try to get more info
from the source soon.

~~~
carbocation
That sounds incorrect. Lupus and Hashimoto's can coexist. It's not something I
know all that much about, but if anything, Hashimoto's, like many autoimmune
diseases, is associated positively with others:

[http://www.mdconsult.com/das/article/body/203965646-2/jorg=j...](http://www.mdconsult.com/das/article/body/203965646-2/jorg=journal&source=&sp=22862642&sid=0/N/733434/1.html?issn=0002-9343)

Among those with Hashimoto's, the relative risk for having lupus is 6.23-20.0.
Thus, Hashimoto's is positively predictive. There is no reason that an
inflammatory thyroiditis should mask ANA, anti-Ro, anti-La, etc. (If there is,
though, please do tell me about it because that would be some very useful
knowledge.)

~~~
jmintz
You could very well be correct, I am trying to remember something I heard
second hand a couple of years ago. But I emailed my relative who went through
all this to find out exactly what happened. And I am pretty sure they have
both Hashimoto's and Lupus, it was just that Hashimoto's made it more
difficult to detect Lupus.

------
gcv
Reading your post, it seems that you've given everything in traditional
medicine a serious shot, and it failed to help. I honestly don't know what
would help, but since you're asking hackers, I suggest the following "hacks".

1\. Take time off from work, if you can. Try two or three months. During those
months:

2\. Exercise. Make your body work. Start with low-impact stuff: biking,
rowing, push-ups, pull-ups. Find a trainer who can help you get into circuit
training. Train with weights. It's amazing how much better the human body
works when it has the strength to support itself.

3\. Change your diet. Considering the extremity of your digestive problems,
you probably need an extreme change. Try raw food veganism. I've anecdotally
heard of it working miracles on people with digestive trouble, and it
certainly seems like the healthiest diet imaginable. You'll have to work
pretty hard to receive correct nutrients in good amounts. Read
<http://www.nytimes.com/2010/05/13/sports/13runner.html> for inspiration. You
may need to find a nutritionist to help out, but in the meanwhile, try reading
this blog: <http://www.choosingraw.com/>

~~~
Vivtek
If raw veganism isn't working, the "paleolithic diet" or "specific-
carbohydrate diet" are what worked for us (the latter, especially; they're
essentially the same thing, but Google will find different communities for
you).

Juicing may also work for you; it didn't for us (except insofar as fresh juice
is so incredibly much better than bottled that it was worth it). Couldn't get
the kids to drink vegetable juices without so much grape that the sugar hit
seemed exorbitant.

But I can't agree more with #1 and #2 - exercise will help.

Tai Chi is good for helping you lift yourself. Yoga's good, too - and both
combat stress, which _has_ to be a factor here.

~~~
stoney
Generally I think a complete life overhaul for a couple of months would be
worth a go. It might turn out that the condition is environmental rather than
medical. Or it might not. Either way, it's probably worth finding out.

You could try looking into what this guy promotes: www.marksdailyapple.com -
basically trying to eat and exercise in a way vaguely similar to our caveman
ancestors (or at least his interpretation of our caveman ancestors).

And if you can go somewhere sunny for a few weeks that can't hurt either.

------
edw519
If I had your symptoms, this is absolutely the first thing I would do:

<http://drfuhrman.com/ask/default.aspx>

He makes it easy to get started by email & phone. Then, as needed, he's only
an hour flight or an 8 hour drive from you.

He has an incredible track record helping 10,000 people with all kinds of
problems who hadn't found relief any other way. As an M.D., he can adjust your
drug regimen and as a natural healer, he won't be afraid to explore other
possibilities often missed by other physicians. Who knows, maybe you could be
Number 10,001. Definitely worth checking out.

~~~
richardw
_This_ is the first thing I'd do:

<http://quackwatch.org/01QuackeryRelatedTopics/spotquack.html>

~~~
edw519
^^THIS is the reason why I normally refrain from contributing to any post
regarding health, politics, religion, or popular culture.

But OP asked for help and I figured that responding to a plea for help from
another hn'er takes precedence over personal policy.

OP needs help. I'm contributing. Unlike many of the other responders, I'm not
giving advice because I am not a health care professional. So I referred OP to
the best resource that I know.

I figured that it was only a matter of time before some poser would play the
"quack" card.

Tell me, richardw, how familiar are you with Dr. Fuhrman's work? Have you read
any of his books or peer reviewed scientific papers? Have you gone to any of
his talks? Have you met any of the hundreds of other health care professionals
that have followed his work and accepted his mentorship? Have you ever seen
him personally or referred friends or relatives? Have you met any of the
thousands of people he has helped?

If so, please share your experience with us and OP. Otherwise, just step aside
and allow OP to the receive the feedback he seeks. You're not helping.

~~~
richardw
Wow, cranky guy. I didn't mean it as forcefully as it may read.

That page I pointed you at is an attempt at a quack filter. If Dr Fuhrman
passes it, then great. When someone sends me an email with extraordinary
claims, my first action is to Google their info with words such as 'hoax'. In
this case, that page and his name came up pretty fast.

So what I would do is check extraordinary claims particularly carefully. That
page looks like an excellent starting point.

Btw - you don't know me, so losing your rag and throwing around words like
'poser' probably says more about you than me. Get that checked out.

~~~
run4yourlives
You attacked the guy pretty harshly, basically insinuating that the dude he
suggested is a quack.

You should expect a response like his when you do that. If that wasn't your
intent, keep a eye on your communication methods - written passages convey the
tone assumed, even if that is not the tone you set.

~~~
richardw
No, that was hardly harsh. Guy claims a hero is the fixer for all ills, I
point you at a quack site. Can't handle that and gets all insulting? Okay. How
about 'there are many doctors on the internet who claim to be the answer to
every illness. The odds that your one guy has somehow out-thought every other
smart doctor to find time to fix the most intractable health issues at the
rate of (10 000 / career time) is hard to believe. That he might be the one
person who knows about exactly what the OP has as a condition, has a
likelihood that is vanishingly small.'

I reckon the issues of health are harder than programming. No programmer knows
everything, and those who claim to should be ignored. Therefore, any doctor
claiming to have all the answers should at the very least be treated with huge
suspicion.

Add in massive self-promotion and every alarm bell goes off. The guy may have
some great stuff, but being presented as the sole Doctor for the New Millenium
is going to get you attacked, and far more harshly than I have.

~~~
run4yourlives
_Guy claims a hero is the fixer for all ills,_

Where exactly did he do that? From what I can read he is simply providing a
suggestion to a _person who has been talking to doctors since he was 20_.

It seemed I quite possibly have assumed that the tone in your comment was not
intentional, but it looks like that wasn't the case. Quit being such an
asshole.

~~~
richardw
What part of his claim was relevant to the OP's issue? Is a blanket claim of
10k healed useful? Is that out of 10k people with similar conditions to the OP
or 100k drive-by vitamin injections and a new diet and a 10% success rate? How
was the improvement measured? Do you care that the OP could go on some wild
goose chase that isn't the best use of their resources?

------
jhollingworth
Hi my father is a doctor and I sent him a link to this blog asking if he knew
what might be wrong, here's his response:

He has classical chronic fatigue syndrome, on the same continuum as
fibromyalgia and 'ME'. The best term is 'syndrome of central sensitisation'.
"Gulf war syndrome, yuppie flu etc are all part of the same spectrum. It is
akin to phantom limb pain.

The problem lies in the brain, in the area of the brain that processes
incoming sensory information before it presents it to consciousness, which is
where we all live. Our brains have the capacity to turn up sensation in the
short term to help us respond appropriately to a threat: for example people
report that in a road traffic accident everything becomes vivid, and time
slows down. This normally turns down after the threat passes. If the threat is
severe enough, the memory may keep coming back in flashbacks and nightmares,
and the person suffers anxiety and panic attacks. This is post-traumatic
stress disorder.

Some people develop the syndrome of central sensitisation after a major stress
(I had a superfit tree surgeon, a felled tree landed on him but not a branch
hurt him, but afterwards he developed severe generalised pain , couldn't sleep
and was exhausted. He never worked again).

The more common group are people who have major childhood threats, such as
early bereavement, parental violence, bullying , sexual abuse etc. It seems
their brains become hard-wired in adolescence to be in a permanent state of
this hyper-vigilence. All they need is a 'second hit' later in life, some
emotional or physical problem, and the whole process is triggered: central
sensitisation ensues as a permanent problem. It's like a radio with the volume
turned up too loud: there's nothing wrong with the signal or the radio, but
the noise it makes is intolerable.

In fact, sophisticated research tools have demonstrated chemical, electrical,
blood flow changes and on functional MRI in sufferer's brains. In fact, there
are physical changes to the brain in PTSD, with atrophy of the hippocampus.

Listening to these unfortunate people is fascinating, because it is clear
their suffering is so great and real, and it gives us insight into the variety
of experiences that human beings endure. A character in The Tempest remarked
how beautiful the island was - it is so sweetly perfumed and the waves
breaking on the shore make such sweet music - whereas his companion said ' It
stinks like a fen.'

Treatment is far from satisfactory, especially for protracted severe cases.

~~~
igravious
You know jhollingworth, nobody has put forward your analysis here or suggested
(hushed voice - hypochondria - which could be related to what you describe).
But, and please don't mod me down here, this person must a) be either
_extremely_ unfortunate in not finding one competent person to perform a
correct diagnosis in 18 years, b) have an extremely rare ailment or an ailment
that is not so rare but is habitually not picked up on or c) mentally deluded
in some way. I am not a medical expert, I completely sympathise and hope for a
successful outcome.

------
savemylife
I'm the OP, and it's my blog post. Posting this under an alias, but I've been
on HN for a year, and I'm hoping that this community of brilliant hackers can
help me get my life back.

~~~
NathanKP
There was someone on here about six months ago who posted about having
terrible, varied medical symptoms similar to yours, and they tested positive
for Lyme disease. The post title was something like "so what is wrong with
ben?" or something like that.

I can't find it in Google now. Maybe YCombinator doesn't keep older text post
submissions? Sadly the internet wayback machine doesn't have any entries for
HN from Jul 1, 2008 onward, so I can't find it there either.

Anyway their story was so similar to yours that it makes me think you are
either that member, or have the same thing he had.

~~~
savemylife
It's not me.

~~~
Shooter
I'd be happy to correspond with you privately, if you think I could help.

------
wazoox
That's weird. Please excuse me, I'd like to ask you a couple of questions that
come to me :

Did you move in the past 18 years, or do you live in the same area?

You mentioned Vitamin D did help, for a short while. Did you try sunbathing
instead? That's normally how we get vitamin D.

Are you fat, lean, thin? What ethnic group are you from? Do you know of any
genetic peculiarities?

Did you test against various viral diseases? Have you ever had zona, herpes,
etc. ?

~~~
savemylife
I've move several times (originally east coast, Europe, midwest.) I did try
getting a bit of sun, yes (15 mins daily is supposed to be enough). White, no
genetic peculiarities that I know of. Had chicken pox as a kid, but not
Herpes. 160lbs.

~~~
gojomo
If you think your health is outside the usual patterns -- and it appears it is
-- then you have to lay aside what's "supposed to be enough" based on general
rules of thumb. The mild recommendations of the mainstream may be too little,
but also you personally might need significantly more sunlight. (Your comment
about some improvement with Vitamin D especially draws attention here.)

You also haven't described the places you've lived in enough detail to know if
you've tried significantly different elevations, rain/cloudcover levels, or
lengths-of-day. ("Europe" runs from the Arctic Circle to the Mediterranean.) I
recommend playing with extreme values of the sunlight, latitude, elevation,
and days-of-sunlight-per-year variables a lot more intensely than you have so
far.

------
electromagnetic
My initial suggestion would be to sleep 3-4 hours twice a day, you could be
continually waking in your deep sleep instead of light/rem, which can
ironically make you feel _more_ tired. If sleeping 4 hours in a night is
overall better, it might be worth trying to see if you can get your total of 8
hours by only sleeping 4 at a time.

I regularly feel more awake and alert if I only sleep 6 hours, in fact I've
regularly been asleep just after midnight, up for work at 6:30 and not started
to feel tired until 2-3am.

Another thing I've learnt is that exercise is very beneficial to your quality
of sleep. I work construction and not only do I feel alert for longer periods,
but when I do sleep I usually sleep great.

A few things I've noticed that hurt my sleeping: warm room (my bedroom is like
10C right now); lights in room (even little LED lights are killer; I used to
live in a rural area and the suburbs still kill me some nights); noise again
is a major sleep disturber for me, however I actually found having a fish tank
in my room (with the filter going) did amazing for my sleep.

As an aside: My diet features ridiculous quantities of dairy, which has many
vitamins (like D) which could be of benefit if you have problems sleeping.

I'd also recommend against _ever_ taking sleeping pills, they actually disturb
good sleep by keeping you in light sleep rather than letting you get into
deep/rem.

------
patrickk
Weird.

I have some of the same symptoms as described here - long-term sleep problems
(since I was 13, I'm now 23), nothing I do seems to help (exercise, diet,
reading, cutting out internet at night etc). I'm fatigued constantly too -
mentally only though, unlike the OP. It seems I've tried everything - doctors,
antidepressants, lavender oil on the pillow, warm milk, you name it. I'm
trying to get into web dev at the moment, and I've recently started a great
new job, but when I come home in the evenings I'm so drained it's hard to
muster up the energy. At previous jobs I'm sure they thought I was quite
scatterbrained - but I'm actually a very focused, hard-working individual by
nature, just extremely tired _all the time_.

I'm somewhat concerned for my new job too, as I worked extremely hard in
college to land it, and it's quite cerebral in nature (detailed data analysis,
root cause analysis) and obviously not sleeping right will have a major impact
on this. Today, for example, I drank a giant can of Monster - got me through
the afternoon nicely, but, obviously not a long term solution.

Physically, I'm ok, I don't have many of the more severe physical symptoms
this unfortunate chap seems to have.

Just to let you guys know, any help you post here will be appreciated by more
than one person!

~~~
rwhitman
Monster, RedBull, Rockstar, etc these things are pure evil. I honestly
attribute a lot of my own medical maladies to a few years where I was sucking
them down once a day. And I've experienced a lot of the symptoms in his
article too. I'm no doctor but a detox from the energy drinks is a logical
first step

~~~
SkyMarshal
Completely agree. Back in the mid 2000s I was drinking two Redbulls a day for
several months to keep up the pace, when one particularly stressful day my
heart literally skipped a beat. I could feel it in my chest just stop when it
should have beat, then pick up beating again on the next one.

Scared the hell out of me, and I just knew it was the phenylalanine in
Redbull. Quit cold turkey that day and haven't drunk a sip since. I get my
caffeine from green tea now.

<http://en.wikipedia.org/wiki/Red_Bull#Cardiovascular_effects>

------
auston
I'd recommend x-posting to <http://hackermed.com/>

also - I feel like it could be something spinal - but I am not a doctor.

------
einarvollset
Neuro/Chronic-lyme disease. Unfortunately that is such a weird catch-all with
no obvious and agreed upon treatment at all. Definitely talk to someone who is
an expert in the field.

------
metamemetics
Malnutrition might be unlikely, but you mention the problems started as a
vegetarian. This points to a strong possibility of Iron Defeciency, which can
be fairly common (but of varying severity) _especially_ on vegetarian diets.
You'd be looking at anemia and dopamine\serotonin dysfunction from it which
could match your fatigue complaints. I would see if Spirulina does anything
for you: <http://en.wikipedia.org/wiki/Spirulina_(dietary_supplement)> it's a
super source of iron and can correct anemia and there is research supporting
several other health benefits.

Also use a nutrition calculator on a few average meals and check the label on
your multivitamin to make sure you arent missing anything else essential like
calcium (multivitamins dont necessarily contain everything, they would be
gigantic if they did). Don't follow a food fad just ensure you are getting
every nutrient and avoid all processed\prepared food.

Also, what is your height and weight? Do you have enough energy to exercise?
You should let us know you aren't morbidly obese or anything like that. Also
what time do you wake up and go to sleep?

One thing that helps narcoleptics is resetting the sleep schedule by staying
up progressively _later_ each night until the sleep schedule slowly wraps
around over the period of a week. This can reset your body's circadian rythyms
in a more permanent manner and help with fatigue. If you try using Melatonin
instead to reset your cyrcadian rythyms, don't make the common mistake of
taking it right before you go to sleep, it should be taken around 4 hours
before planning to go to bed.

Vitamin D, SSRIs, and sleeping less helping all point to depression or anxiety
and serotonin\dopamine dysfunction. Sleep deprivation basically has similar
effects to an SSRI. Constant nasal congestion also points to this, because
serotonin and the catelcholmines (dopamine and its endproducts norepinephrene
and adrenaline) are the primary vasoconstrictors in the body. Vasoconstriction
causes bronchodilation or opening of the airways which is why simple
decongestants like Sudafed operate on norepinephrine. Spirulina could help
with dopamine dysfunction due to its high content of L-tyrosine in addition to
iron, for Serotonin you've probably heard of Omega3 fish oil which can help
some.

Numbness indicates poor circulation and\or B vitamin deficiency. It will
hopefully reside once you have enough energy to exercise and you determine you
aren't anemic or malnourished.

~~~
TeHCrAzY
Iron Deficiency is pretty well understood afaik, it's tested in any normal
"general" blood test and would be quickly picked up on.

------
Tichy
What about the Lyme disease, I think you can't easily get rid of it with
antibiotics. So it might still be there, even after the year on antibiotics.

Not a doctor, but the absence of allergies reminds me of the hook worms that
are used to treat allergies. Not saying it might be hook worms (they don't
seem to have many "side effects"), but maybe some parasite is messing with
your immune system (not sure what lyme disease does, but I think it is a
parasite?)?

------
ihodes
In conjunction with the symptoms and the background you give (18 years of
this), it sounds a lot like an autoimmune disease. Which isn't saying much, I
know, and I'm sorry for that.

I've got an autoimmune disease (Crohn's Disease) which has a lot of similar
symptoms when left untreated. In fact, many autoimmune diseases have similar
symptoms and and hard to track down–I too spent far too much money and time
going from doctor to doctor and diagnosis to diagnosis until they discovered
what I had.

Other peoples' suggestions to test your vitamin K and A levels (because of
your reaction to more vit D) sounds like a very good step towards treating the
symptoms. Please do, too, go out in the sun as much as possible, as this both
aids in the processing of vit D and helps to coordinate your circadian rhythm.

Good luck.

------
strlen
My apologies if you've already heard of/have been tested for this, but what
about Lupus? Severe fatigue is a very common symptom. While it's a very well
known decease, it's rare so you may not have been tested for it (there's a
simple antibodies test).

(I lost someone very close to me to Lupus two years ago -- severe fatigue,
intolerance to hear were some of the main symptoms she experienced, even when
she didn't have flare ups).

~~~
yummyfajitas
It's not lupus! It's never lupus!

Now where is my vicodin?

~~~
strlen
Parent is referring to the television show House, M.D. where there's a
temptation to diagnose any strange illness as lupus.

That's actually a valid point, as it's too easy to lump any sort of
undiagnosed, chronic-like illness into lupus. Nonetheless, it never hurts to
check as there's a fairly simple test for it that could be used along side a
different diagnosis. Lupus, however, is rare and is 10x more likely to occur
in women than in men so I wouldn't be surprised if it's under-diagnosed.

Note, Lupus is also just one of auto-immune disorders. Somebody else had also
suggested that the poster could be suffering from an auto-immune disorder.

------
mikecane
Sorry, at the moment I don't have time to read the 166 Comments here, but I
did search for "cholesterol" and it came up negative. What is your cholesterol
level? Did you know that proper brain functioning requires good cholesterol?
Some of your symptoms sound like what I experienced when I was put on a statin
drug (specifically Simvastatin). Against medical advice, I stopped taking it.
(For me, it was the right thing to do; I'm watching someone else have their
mind hollowed out by it starving the brain of cholesterol -- exactly what was
in my own future!) This is all I can offer about this and I hope it provides a
clue.

------
uptown
Have you been tested for Creutzfeldt-Jakob disease? Many of the symptoms you
describe seem to be possible matches, and it's frequently a very hard disease
to diagnose.

[http://en.wikipedia.org/wiki/Creutzfeldt%E2%80%93Jakob_disea...](http://en.wikipedia.org/wiki/Creutzfeldt%E2%80%93Jakob_disease)

Two more questions.

1\. Have you ever been a drug user?

2\. Have you ever received a blood transfusion?

~~~
runT1ME
It kill people in months to a year. Considering its happend for a while to
him...it makes me wonder if you know anything about C-J or you read his blog
post...

------
ax0n
A lot of this sounds like what my wife's been going through for the last 3
years. Dozens and dozens of tests from the most mundane to the most exotic of
disorders have turned up nothing. Her last physician told her to go to the
Mayo Clinic. It's frustrating for her, and painful for me to see her this way.

She has a new physician now, but I'm not sure how much that'll help. She also
has an E/N/T Specialist, chiropractor, neurologist, psychologist,
cardiologist, pulmonologist, electrophysiologist, endocrinologist and other
specialists on tap. She's stumped them all.

------
pigbucket
It occurs to me that were I in your situation, I would not have a very good
idea about what to do with all the suggestions here on HN and on the blog.
Perhaps you already have thought this through, but for me it would not be an
insignificant problem. It might rather be the kind of problem that
crowdsourcing would be more suited to help with than the problem you first
came here with; i.e., you might want to now ask HN, how do I strategize from
here. One of the problems you seem to have had is finding the right kind of
doctor. A specialist in a given field is only useful if you happen to have an
illness in that field. A generalist is unlikely to be able to identify a rare
disease. How do you go about solving that problem. I don't know the answer,
but perhaps someone here does. And perhaps someone here can tell you how to
approach doctors with a strategy most likely to get them committed to solving
the problem. My gut feeling, in any case, is that you ignore alternative
medicine/radical lifestyle change suggestions. I would guess (and the fact
that I must guess is probably telling) that alternative medicine is no more
successful in scenarios where traditional medicine fails than in those where
it succeeds. I wish you the best.

------
apinstein
Are you of any particular racial/ethnic background? Some forms of some
diseases are prevalent in only certain races/ethnicities; you might try to
find a neurologist or immunologist that's the same race/ethnicity as you, or
one that specializes in your race/ethnicity. Sometimes they will know about
things that aren't even on the radar of people looking at the general
population.

Also, there are some TV shows about "Mystery Diagnosis" stuff; maybe you can
get yourself on one?

Good luck!

------
mmaunder
You don't mention your height and weight or BMI. You also don't mention
exercise. Sleep apnea is common among people who are overweight as are many of
the other symptoms you describe. Are you? Your symptoms started when you were
20 which is when many people start gaining weight.

You also seem to have had massive exposure to a wide array of chemicals.
"...but after a year of treatment with every antibiotic imaginable...". Please
remember that FDA approval does not make a substance safe and the FDA does not
do drug interaction testing.

I'm assuming you're American. I moved to the USA in 2005 when I was 31. After
a lifetime of perfect health my digestive system played havoc for a few years.
Only after paying careful attention to my diet did I regain my physical well-
being. Remember: Gatorade is not water, Corn fed beef is 10 times fattier than
grass fed, 90% of bread contains a huge amount of sugar and has very little
fiber etc. Take an interest in your diet and it will change your life for the
better.

The American medical system can be the worst thing for your health. This is
the only country where I've seen post-operative pain medication used for pain
maintenance, teenage boys prescribed prozac due to exam stress and so on. It
is designed to extract every last penny from you while keeping you healthy
enough to perceive benefits and avoid lawsuits. Understand that you will
always find a sympathetic ear and an easy prescription.

One last thing: Have you moved house since you were 20? Or did you stay in one
place for a long time? Chemical exposure through air, water, diet or skin
contact could be a cause. Radioactivity through radon exposure or another
source is also a possibility you should consider.

Best of luck!

~~~
jrockway
You're right about the exercise. The rest is a bit FUD-ish. It's true that
typical "American" foods are unhealthy, but this guy is more than unhealthy.
Millions of people eat like crap and feel fine (until they die of hypertension
at age 50). Something else is wrong with the OP.

The rant about the health system is largely false. The American medical system
has access to a lot of very expensive technology that may or may not help. The
best we can do is try. Everyone wants you to get better; your family, your
doctor, even your insurance company.

All I can say is that my experience with the system is not like yours at all.
I have allergies. I didn't believe the first doctor when he told me that, so I
went somewhere else. They did a blood test and prescribed a drug that was more
effective than antihistamines. Then I started getting allergy shots. The total
cost out of pocket for that? $20.

The system is not trying to screw you. The reality is that medicine is a very
difficult field that we know very little about.

~~~
mmaunder
I've experienced living in 2 other countries and IMHO the intent is not as
honorable here as you suggest. For example, maintenance drugs like Lipitor are
extremely profitable and provide long term recurring revenue. There's a strong
incentive (at best) for doctors to recommend a lifetime prescription over diet
and exercise.

Prostate cancer detection and surgery is another controversial area. Read
this: <http://www.nytimes.com/2010/03/10/opinion/10Ablin.html>

On a tangental note, you should see if you can find the podcast of "My
Lobotomy". The history of Dr Freeman and the story of Howard Dully. It's a
great lesson on why a healthy suspicion of the medical profession is a good
thing. Here's a transcript:
[http://www.npr.org/templates/transcript/transcript.php?story...](http://www.npr.org/templates/transcript/transcript.php?storyId=5014080)

I get allergies too. Horrible damned affliction!

~~~
jrockway
_I get allergies too. Horrible damned affliction!_

But fortunately, with a well-tested cure.

------
ashishbharthi
This may not sound very useful or relevant but just my two cents of
contribution:

I have seen one episode of Grey's Anatomy in which there was very similar
case. And they found that the guy had a non terminal tumor in his head and the
tumor was pressing some nerves, which in turn was causing all the symptoms
that he had. Talk to your doctor if they have not already done your head CT.

------
koevet
This is a bit out of topic and I hope that "savemylife" will find out more
about his/her problems.

I find that a "crowdsourced diagnosis" approach may have a revolutionary
impact on the way doctors and patients look at diseases. Recently I have lost
a close family member because the doctor who first visited him overlooked some
symptoms that could potentially lead to the discovery of his disease (a
cancer). Time passed and the cancer developed to a stage that was impossible
to cure.

Following this experience, I've started playing with the idea of a world-wide
user generated symptoms database, managed and moderated by real doctors and
experts. The main issue with such database would be the enormous amount of
"false positive fright" triggered by casual users just checking out basic
symptoms (for instance, a sudden high fever can be a symptom of a cancer
initiated infection <http://www.ncbi.nlm.nih.gov/pubmed/16257792>, but can
also be a symptom of many other less life threatening diseases). I'm not a
doctor so I'm not aware if something similar already exist - probably it does,
on a country specific basis maybe? I know for sure that some doctors use
Google regularly to double check their diagnoses. In most European countries,
the majority of initial diagnoses are done by General Practitioners, who are
doctors assigned to a patient by the national healthcare system. These doctors
actually redirect patients to specialists or to hospitals for specific
analysis based on - often very quick - assessments of the patient's symptoms.

I'm not sure how the healthcare system works in other countries, but I believe
that there is always some kind of initial medical routing based on symptoms. I
wonder if the precision of this initial assessment could be improved through
this database and some statistical algorithms? Any doctor, biologist (and of
course, regular HNers) care to share his/her catch on this idea?

------
csmeder
This won't cure the desease, however, in the mean time this might help you get
work done:

1) Never stop desiring the things you want. (re evaluate how you may reach
that desires but never stop desiring important things). A burning desire will
pull through to accomplish much more than you can do with apathy. Read
[http://books.google.com/books?id=c86H36mgiM4C&lpg=PP1...](http://books.google.com/books?id=c86H36mgiM4C&lpg=PP1&dq=think%20and%20grow%20rich&pg=PP1#v=onepage&q&f=false)
if you have the strength/time

2) Hemmingways Hack: [http://www.secondactive.com/2009/08/boost-your-
productivity-...](http://www.secondactive.com/2009/08/boost-your-productivity-
with-hemingways.html)

3) And finally the Pomodoro Technique <http://www.pomodorotechnique.com> This
has hemmingsways hack built in. If done right (read the PDF) it is amazing.

------
olliesaunders
Some questions for you:

    
    
      - Is there any history of learning difficulties in your immediate family?
      - Were there any medical problems while your mother was pregnant with you?
      - Was the birth process unusual or prolonged in any way? E.g. CS, Forceps, etc.
      - Were you born early or late for term (more than 2 weeks early or more than 10 days late)?
      - Did you weigh below 5lbs (pounds)?
      - Did you have any difficulty feeding in the first weeks of life, or in keeping food down?
      - Were you extremely demanding in the first 6 months of life?
      - Did you miss out the 'motor stage' of crawling on your tummy and creeping on hands and knees?
      - Were you late at learning to walk (16 months or later would be considered late)?
      - Were you late at learning to talk (2-3 word phrases at 18 months or later would be considered late)?
      - Did you have difficulty in learning to dress yourself, for example, do up buttons or tie shoelaces beyond the age of 6-7 years?
      - Do you suffer from allergies?
      - Have you had an adverse reaction to any vaccinations?
      - Did you suck your thumb beyond the age of 5 years?
      - Did you continue to wet the bed, albeit occasionally, above the age of 5 years?
      - Do you suffer from travel sickness?
      - Do you find it very difficult to learn to tell the time from a traditional (as opposed to digital) clock?
      - Did you have an unusual degree of difficulty learning to ride a bicycle?
      - Did you suffer from frequent ear, nose, throat or chest infections at any time in development?
      - In the first 3 years of life, did you suffer from any illnesses involving extremely high temperatures, delirium or convulsion?
      - Did you have difficulty catching a ball, doing forward rolls/somersaults and stand out as 'awkward' in PE classes?
      - Did you have difficulty sitting still for even a short period of time?
      - If there is a sudden unexpected noise, do you ever over-react?
      - Did you have reading difficulties?
      - Did you have writing difficulties?
      - Did you have copying difficulties?
    

How many yeses do you get?

------
bdickason
I can't help but I'm upvoting this in hopes that someone who can will read it.

------
jlmendezbonini
I once saw a TED conference[1] about a project called Patients Like Me
(<http://www.patientslikeme.com/>)

From their website: "Our goal is to enable people to share information that
can improve the lives of patients diagnosed with life-changing diseases. To
make this happen, we've created a platform for collecting and sharing real
world, outcome-based patient data (patientslikeme.com) and are establishing
data-sharing partnerships with doctors, pharmaceutical and medical device
companies, research organizations, and non-profits."

[1]
[http://www.ted.com/talks/jamie_heywood_the_big_idea_my_broth...](http://www.ted.com/talks/jamie_heywood_the_big_idea_my_brother_inspired.html)

------
icey
Of the symptoms you've listed, I've had these problems:

    
    
      severe fatigue
      non-refreshing sleep
      memory loss, inability to concentrate or focus
      muscle pain
      dizziness
      nasal congestion, always having to clear my throat
      heat intolerance
    

I am still working on resolving some of these, but the biggest 2 culprits
were:

1\. Chronic dehydration. Even though I thought I was drinking plenty of water
(probably 64 ounces a day), it turned out it wasn't enough. Now I drink at
least a gallon of water a day - drinks containing caffeine don't count, and
most days I drink 1.5 gallons or so. This helped almost all symptoms to some
degree.

2\. Food allergies, corn syrup specifically. I can eat it and not really
notice any effects immediately, I assume that's because it's been in my system
since a very early age; but cutting out all food and drinks that contain corn
syrup has resulted in _significant_ improvements with regards to fatigue,
sleep quality, muscle spasms, memory / focus and nasal symptoms. Regular corn
on the cob doesn't seem to have nearly the same effects on me as corn syrup
does. I don't know if it's a glycemic index thing or what. What I know is that
it's easy to replicate the problem, I can go have a soda or a bunch of white
bread that uses corn syrup and I get so exhausted I feel like I'm going to
pass out. But if I try Mexican Coke, for example, I feel fine.

I'm not a doctor and have never played one on TV, but my personal guess is
that your problems may be diet related. You could try a divide and conquer
diet to see if you feel any improvements. Worst case scenario is that it
forces you to have a healthier diet while you're figuring out the real cause
of your problems.

I would also recommend seeing an actual allergist instead of your regular
doctor. I started allergy treatments with my primary care physician and he
loaded me up with a bunch of drugs that didn't do me any good. I went to an
allergist and have a plan that seems to be working in the long term war
against allergies.

Good luck to you, I hope you find out what the problem is (and come back to
tell us about it).

------
martian
I am not a doctor. However: My friend was suffering some similar symptoms to
what you're describing and after years of tests and trials, one doctor decided
to give her some adderall and she's be glowing ever since.

Best of luck tracking this down.

------
nfnaaron
(My comment is backed by fundamental ignorance.)

Have you tried university/research hospitals? I wonder if it would be worth
researching/shopping for such a hospital and get them interested in and
committed to finding out what ails you.

~~~
savemylife
Yes I have. It was a bad experience. I kind of thought I'd be an "interesting
case" of sorts for them, but I had to fight even harder to get anyone to
listen to me. That's also how I ended up having a useless (and somewhat
damaging) surgery.

However I do still feel that there must be some kind of advocate for such
cases in big hospitals, but I've never been able to find one.

------
rsheridan6
If the B12 doesn't work out, food intolerances are worth looking at. Food can
cause problems like this:
<https://health.google.com/health/ref/Celiac+disease+-+sprue>

That's one autoimmune disease caused by one specific protein found in wheat.
Suppose you have a similar problem. You could fix it by cutting out the
offending food.

Wheat would be a good thing to start with. My wife cut it out (along with
sugar) and found that her lifelong GERD went away. That's not in any standard
medical advice.

It's worth a try.

------
carbocation
I've never seen someone with osteomalacia before, so caveat lector: I would
keep osteomalacia on my differential. Some of your symptoms - particularly
your musculoskeletal discomfort and disability - are suggestive. Now,
osteomalacia would not be the unifying diagnosis - it would be a consequence
of low vitamin D. Your hypovitaminosis D could be the result of your diet
(vegetarian) and lack of sun exposure, though there is, of course, another
differential for low vitamin D.

At the end of the day, though, it's really hard to try to make a diagnosis
based on a blog post. A doctor should see you walk into the room; hear your
voice; be able to ask follow-up questions; carry on a relatively fast-paced
conversation, so he may hear things quickly enough that the dots connect
themselves. A doctor should see your lab values, and know precisely which
tests you got and what the results were. There is a lot of diagnostic value
embedded in the patient encounter that just isn't conveyed over the web. Now,
your approach may work - perhaps this type of story is virtually diagnostic in
some field - but it comes off as being pretty broad. Without knowing why your
other physicians did what they did, knowing what they did actually makes me
more confused, not less. Seeing your past medical history, as written by a
doctor, would be highly informative.

------
andrewcamel
I just wanted to tell you that I submitted your case to a medical practice of
20 doctors. I know all of these doctors very well and they will do everything
they can do to diagnose your issue. While it is not exactly their department,
that being neurosurgery and orthopedic surgery, they promised me that they
would pass on the case to their colleagues who are more suited for it. I
sincerely hope that we can find a solution to your problems so that you can
get your life back on track.

------
sambe
In my entirely non-medical opinion, it sounds like psychological effects could
be responsible for a large part of why you are in such a bad way. Even if they
are not the root cause, they could be severely clouding your judgement of
things by forming negative feedback and biases. I know you've had too many
responses to always reply to the threads, but the impression I was getting is
that everything that should be good for you makes you feel worse. Something
there points to a non-physiological component. I'm not saying it's all in your
head, but a large part could be, stopping you from solving the other part.

With chronic pain/depression and those kinds of things it can be very easy to
give up quickly or think that nothing can help. You have become conditioned
for failure. It sounded like you had given a limited chance to normally
healthy things like sunlight, exercise, and good diet. As others mentioned -
15 minutes may not be enough if you are already having issues. Packaged foods
are not healthy. Try to dedicate a month to genuinely healthy living,
regardless of if you feel it's working. No crazy diets or colonic irrigations,
but eat real foods that your ancestors would have eaten. Drink water not
caffeine/alcohol/sugar. Do both regular and vigorous exercise. Socialise, in
real life. Get all the things that we were "designed" for, and none that we
weren't. Stick it at. See if it's still not working after a dedicated, longer
term trial. It will be difficult - it's hard enough for people with no
problems!

Additionally - have you tried going deliberately sleep-deprived? Or fasting?
Can you go 2-3 days without sleep, sleep well, and still feel tired?

------
waleedka
There is a way to test if it's an autoimmune disease which involves taking
medication for a week that depresses the immune system temporarily. If the
symptoms subside then you know it's an autoimmune disease and you can dig
deeper from there. You'll need to talk to a neurologist to get that done. My
advice is to find a good neurologist and stay with him/her for a long while
rather than switching doctors too often.

------
Keyframe
What about your iron, magnesium and potassium levels? I've read you've tried
antidepressants, but has psychosomatics been ruled out completely?

~~~
strebler
Low iron can definitely cause a lot of the fatigue symptoms he's
describing...but if the doctors missed that, it's scary.

~~~
lotharbot
High iron can also cause many of the same symptoms. It's actually fairly easy
for doctors to miss.

[http://www.mayoclinic.com/health/hemochromatosis/ds00455/dse...](http://www.mayoclinic.com/health/hemochromatosis/ds00455/dsection=symptoms)

------
jimmybot
Not a doctor, but just reasoning based on what you said:

The Vitamin D sounds promising. My guess is that Vitamin D is part of the
solution but you may have depleted something else that Vitamin D is supposed
to work in conjunction with when you took the super high dosage Vitamin D so
that it no longer had any effect. I've read that Vitamin D depletes Vitamin A,
Vitamin K2, and Vitamin E.

~~~
savemylife
I thought so as well. My doc and I are currently locking horns over this, as
my Vit D levels are normal now. Initially this doc was quite helpful (and he
spotted the Vit D deficiency- definitely a novel experience for me), but now
he's very defensive and saying things like "which one of us has a medical
degree?" when I ask about the Vitamin D again.

I honestly can't recall if the initial improvement when taking D started to
subside before or after starting the 50K prescription.

~~~
jimmybot
Here's the health blog that was on the HN front page a few days earlier:
[http://wholehealthsource.blogspot.com/2008/10/vitamin-d-
its-...](http://wholehealthsource.blogspot.com/2008/10/vitamin-d-its-not-just-
another-vitamin.html)

He talks about bit about Vitamin A and Vitamin K2 at the bottom of the post;
supplementing both might be something to consider.

------
CptMauli
I don't understand why nobody has suggested
<http://en.wikipedia.org/wiki/Sarcoidosis>

It is not that common, but is is not that rare that the doctors shouldn't have
picked it up. The thing is, although in most cases the disease is in most
cases expressed in lung problems, it can actually affect all organs.

------
eekfuh
So have they tested your Iodine levels?

My dad had similar issues and slowly progressing over about a 18 year span.
His thyroid grew large and his health issues worse and worse. (He noticed
while looking at a family picture that was 12 years old at the time, where
which his adam's apple was small and became large).

It was a slow process for that to happen, but one thing he found to help with
his chronic fatigue was to make sure he always had the right amount of iodine
in his system, which is due to his thyroid problem. To this day he puts iodine
directly on to his arm or leg and makes sure he gets the correct amount,
otherwise he is sick. He does that 3-4 times a day. As with your problem,
doctors were completely unable to help them and most seemed to not take great
care with trying to understand what is really happening and instead focusing
on symptoms.

------
adrianwaj
You've got Lyme.

You should go to a dedicated specialist in Lyme, not just a normal doctor.
Lyme has coninfections with Bartonella and other bugs. It also occupies
multiple niches in the body and has to be hit with many antibiotics.

There's a specialist in Germantown, Ohio:

<http://lymemd.blogspot.com/>

Don't waste time.

------
kmfrk
This may have been mentioned, but don't assume that you can attribute your
maladies to _one_ diagnosis: "x" disease. It's quite probable that it is the
result of a multitude of things. The same can be said about the remedies.

It's very easy to relate to your problems, but who the heck can't to some
degree. This is why people should shy away from playing doctor (curious
youngsters excused), because there are a lot of fallacious pitfalls that
people are not aware of most often.

I, too, have some of the symptoms (which may or may not be ADHD) and some kind
of chronic, constant allergic reaction. It sucks like hell, but I don't let my
frustration cloud my resolve nor my wish to attribute it to one thing to blame
everything on and to find, because I may just be punching at apparitions.

------
cperciva
Like most people here, I only have a very marginal knowledge of medicine; but
these symptoms make me think endocrinology. (Caveat: I probably have some bias
here, since I've had interesting endocrine issues.)

You mention hypothyroidism and having seem an endocrinologist; what tests did
he/she do?

------
nlanier
I have nothing to suggest as I am in a similar situation and have been
pondering making a similar type of request to the community for a long time. I
have been repeatedly frustrated with my attempts to get to the bottom of it
(ie rejected by the Mayo Clinic, Johns Hopkins, 8 million doctors, 8 million
lab tests). I have reached wits end more times then I care to think about. The
most debilitating thing of all is that I lost the support of just about
everyone I know because no one believes me when I say that I have short term
memory problems and my stomach aches 100% of the time. It truly is a nightmare
and something that I fear sharing with anyone at this point.

In short, if you do figure something out, please let me know. Thank you and
good luck.

------
darrenkopp
I fought back the urge to create a throwaway account named gregory house and
suggest it was lymphoma. That's the extent of my medical knowledge. If you
have problems with medical bills however I would be happy to donate to a
paypal account to help out.

------
mey
If it was me, I'd get in touch with a good endocrinologist.

You may also wish to read these pages.
<http://en.wikipedia.org/wiki/Hyperthyroidism>
<http://en.wikipedia.org/wiki/Hypothyroidism>

In truth, there could be many things that could be causing these symptoms, or
multiple things.

Also I am not a Doctor.

Edit: Also I feel I can relate a little bit, as I was hit by Acute
Pancreatitis recently, and still experimenting to see what the cause is. Of
course the disturbing thing is there is no clear answer, and there may never
be. Wish you the best of luck.

------
herdrick
I'd suggest food allergies / intolerances. Unfortunately the tests for those
are very unreliable. The thing to do is try cutting a few things out and see
what happens. I'd start with dairy or maybe wheat or both. Good luck.

------
carbocation
You said one doctor hinted at an IgA monoclonal gammopathy. Did you ever get
that worked up (especially serum PEP and urine PEP, where PEP=protein
electrophoresis)?

Do you have a CBC (blood count) and CMP (metabolic panel, things like
calcium)?

------
tmsh
If there is an severe underlying cause, I have no idea.

But you might try getting as much sunlight during the day as possible (during
lunch, right after work, etc.). I don't have anything scientific to back me up
-- but I think sunlight does encourage diurnal biorhythms at different
levels/feedback loops.

I only mention it because you mention you responded favorably to Vitamin D for
a while. And that you're a programmer (indoors most of time) like me, and that
there was an onset in college (first time spent indoors a lot potentially). At
any rate, maybe it would alleviate it a little. Just an idea.

~~~
savemylife
I had exactly the same suspicions, given that the symptoms started at about
the same time I started spending lots of hours indoors hacking. I do in fact
take daily walks, and try to time them for prime-sun hours. Unfortunately it
seems to make me even sleepier.

------
eavc
That you received partial or temporary benefit makes me wonder if one of those
conditions was the culprit and you just needed to attack it differently.

Alternately, perhaps the benefit was from suggestion and your condition is
psychosomatic. This doesn't mean it's not real or not out of your control, it
means that you have something in the wiring of your brain that is causing your
body to wig out.

It sounds like what you need to do is to engage with a team of experts and
stick with them. You need someone or multiple someones tracking all of your
various treatments and responses long-term.

------
tomlin
I'm immediately drawn to Candidiasis / Intestinal dysbiosis as a possibility.

Candida can play havoc on your system if it overthrows your intestinal tract.
And most (if not all) of your symptoms are that of Candidiasis.

While it's not the most scientific, you can try the "spit test". First thing
when you wake up, spit in a fresh glass of water. Wait 10-20 minutes. If your
spit falls "stringy" to the bottom you _may_ have a Candida overgrowth. In
which case, get some pro-biotics, preferably those which withstand stomach
acid and get more accurate testing from your doctor.

------
aufreak3
Its great that you've decided that you want out of this. In addition to the
medical processes that the wonderful folks here are offering help with, you
might benefit from just getting your mind off your condition.

Since brain processing is too tiring, you can sit by yourself in a distraction
free quiet place (ex: face a wall) and count your breath for five minutes at a
stretch. Just count your breath 1,2,3,..,10 and back to 1. No need to think
about anything at all for those five minutes. If you lose your count, start
again at one.

------
car
My suggestion to you is to find out if there is a genetic cause.

Reading your symptoms, my hunch (nothing more) is, that there might be
something wrong with your sleep control circuitry. I suppose narcolepsy has
been ruled out, but you might still try a drug called Provigil.

To be more concrete, wait until whole genome sequencing has come down in price
to where you can afford it (give it a year or two), and then have that done.
There is a possibility that you have a very rare mutation causing your
symptoms.

Granted it's a very long shot, but the thing that came to my mind.

Good luck!

------
ukdm
You mention that less sleep makes you feel better, Have you tried Polyphasic
sleep?

<http://www.stevepavlina.com/blog/2005/10/polyphasic-sleep/>

I'm sure you have, but your initial positive reaction to a massive dose of
Vitamin D made you much better. Have you investigated what further large doses
would do? (under doctor supervision of course) I mean much larger than the
initial prescription.

~~~
savemylife
The initial improvement I saw was on a 1000 IU 2x daily over-the-counter
dosage from the doc. This was encouraging, so he gave me a 50K IU weekly
prescription. I started to feel worse when taking this. Thought it was perhaps
too much. Doc had me go back to the 2x daily 1000 IU. Unfortunately I never
got back to that initial level of improvement. My bloodwork now shows that the
Vit D level is within normal range (25-OH, Total: 47, D2: 35, D2: 12)

~~~
Shooter
The Vitamin D thing was one of the first things they discovered with me...but
they started me right away on the 50K IU/week. As with you, the benefit lasted
a short time and then I actually felt worse. It turned out that the Vitamin D
thing was a red herring. Vitamin D is a hormone, and I had multiple endocrine
issues from the viral and bacterial infections...

~~~
savemylife
Wow, that's really quite interesting that we both did initially better, then
worse when on D. How did you get the viral/bacterial infection diagnosis? Was
this lymne-related?

------
briguy
SaveMyLife, relating to the Psychotherapy, have you ever be diagnosed as
having OCD or an Anxiety Disorder. These are much different than depression. I
am in no way minimizing your physical issues (and the positive Lymes test
seems alarmning, and I would certainly try to get a DNA confirmation on that
and focus on that), however OCD/anxiety is a very lethal combination and has
been known to manifest itself in physical ailments.

------
phreanix
I suggest really really looking into Lyme Disease. I've had a friend who
suffered from basically all the same symptoms and that is what it came down
to. The fact that you tested positive once says a lot. It is a really horrible
disease that can sometimes lead to other chronic illnesses. The fatigue is a
ringer for it.

<http://www.cdc.gov/ncidod/dvbid/lyme/index.htm>

------
ericd
From what I've heard, Lyme Disease tests frequently come back negative even
with you have it. It has a lot of different manifestations and potential
symptoms, and the organisms that cause it can go dormant which makes them
highly resistant to antibiotics, so having taken a course of antibiotics is no
guarantee that it's been cured if that's what you had.

And I believe most doctors have an extremely hard time diagnosing it.

Have you been to a Lyme specialist?

~~~
savemylife
Yes, I spent a year getting treated for Lyme by a specialist. Tons of
antibiotics, no improvement.

------
viraptor
If someone mentioned it already, sorry - missed it. Another HN-er had some
strange health problems for a long time. Here's the post:
<http://news.ycombinator.com/item?id=868325> He wrote that in the end he found
a diagnostician "Dr. House without the 'tude'" :) who at least finally
diagnosed correctly what was really wrong. You might want to contact him.

------
anr
I'm very sorry to hear about your problem. I hope you keep investigating and
find out what it is.

If you haven't read it yet, maybe "The Medical Detectives" could inspire you.
Jon Bentley said that it was the best debugging book he ever read.

[http://www.amazon.com/Medical-Detectives-Truman-
Talley/dp/04...](http://www.amazon.com/Medical-Detectives-Truman-
Talley/dp/0452265886)

------
scotty79
I'd try to test if your muscles are actually fatigued, or if your brain just
thinks that they are.

Also I'd try to test my self in sleep lab to establish if there are any
abnormalities in your patterns of sleep.

If muscles are ok, and sleep is ok then I'd try to verify if neurotransmitters
in the brain are normal. After that I'd try to do brain biopsy to see if
neurons are looking normal.

------
chaosmachine
What kind of job do you have? Does it involve sitting at a computer 8 hours a
day? How many hours of exercise do you get per week?

~~~
savemylife
I'm a programmer. Yes, 8 hours a day. I take daily walks, but nothing vigorous
at the moment, as it seems to make me feel worse. In the past I did a twice-
daily 2.5 mile run. Seemed to help a bit mood-wise, and perhaps mildly with
the brain-fog, but lately it seems to make things worse.

------
Kilimanjaro
Take a cruise for a week. No gadgets allowed. Relax your mind, sunbath by the
pool, eat plenty, and have fun, lots of fun.

All of this will help you discard any mental fatigue due to coding for long
periods of time. Plus, it will help determine if there is any environmental
cause.

I am no doctor, but sometimes laughter is the best medicine.

~~~
runT1ME
How the hell does this help him? Did you even read what he said? This is
clearly a physiological issue, not a mental one

~~~
jsz0
I've heard some second and third hand accounts of environmental problems such
as asbestos, lead paint, mold, etc causing mysterious long running health
problems for people so I was thinking the same thing. Not sure a week vacation
is enough time to test it out though. If he's been in the same place for the
duration of this problem it probably wouldn't hurt to get it tested if all
other options are not providing results. Who knows? When I was younger I had
lyme disease for almost a year and after 8 months of nearly weekly doctor
appointments and endless tests my parents had to ask the doctors to test for
it before the doctors figured it out. Since then I think it's never safe to
rule out anything. Without more details it's hard to know if that type of
problem would be applicable here but it's definitely something worth
considering.

------
marr
Have you had a screening for diabetes? Your mental troubles might be
attributed to the way diabetes alters the body's metabolism. Numbness of the
extremities, dexterity, muscle loss/pain, and fatigue might all be attributed
to affects on the circulatory system.

[edited for clarity..]

------
dzlobin
Could it be Polyarteritis nodosa? I had a friend come down with this last year
and he became violently ill, with similar symptoms.

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

------
rumpelstiltskin
This is absolutely not meant in slight. You should start making a list of
medical hotshots - the kind of doctors that that the eponymous character in
_House MD_ is based on - and go to them.

I truly wish you the best of luck. Keep us posted.

------
jcromartie
I just want to say: this guy is suffering and the best a specialist can do is
an appointment 6 months out, and pundits say we have the best healthcare
system in the world?

------
Artifex
Maybe try a DNA chip? I got a bunch of information from my 23andme results,
but perhaps you can find a service out there that's a bit more diagnostic?

------
johnl
Out of curiosity, when you last had the flu, did your muscle aches go away and
your head fell clear right after your fever broke?

------
elboheme
Have they checked your vitamin B12 levels? Your folic acid levels? And RPR for
syphilis?

Could be neurosyphilis.

~~~
savemylife
Tested negative for Syphilis.

------
neurotech1
Have you had any labs to assess liver function?

Do you have a history of significant alcohol consumption?

------
lolgoats
Epstein-Barr Virus, Good luck.

------
mwerty
Go see the mayo clinic.

~~~
YuriNiyazov
Yup! (hey dude, long time!)

~~~
mwerty
indeed - lets catch up... will contact you this weekend.

------
techiferous
I'd see a neurologist.

------
vmmenon
I would suggest taking a break ... Just go some place you feel totally
comfortable and at peace ...

Just unplugging from "routine" life once in a while works wonders ...

------
nearestneighbor
Out of curiosity, who paid for your year-long chronic Lyme treatment? It's not
an official disease, as far as I know.

------
rjurney
I do not see meditation on your list of things you have tried.

I've found that meditation helps one to tolerate pain and discomfort better
than anything else. Being specific, the following items on your list may be
dramatically improved through meditation:

* fatigue * non-refreshing sleep * memory loss, inability to concentrate or focus * muscle pain * confusion * loss of dexterity * nasal congestion, always having to clear my throat * heat intolerance- I absolutely cannot stand the heat- fatigue is magnified by it

Most of your problems relate to either unpleasant sensations, lack of focus,
or exhaustion. I would submit that all of these problems might be addressed
through Vipassana meditation. <http://en.wikipedia.org/wiki/Vipassan%C4%81>
Vipassana is a technique through which you learn to observe, and not react to,
sensation - pleasant and unpleasant. To put it simply: by cultivating
equanimity, it can make pain not 'hurt.' This happens during a single hour-
long meditation session, as your body aches, and with regular practice it
continues through the day, and throughout your life.

It is not magic, and it needn't be religious. I am not a religious person, and
it works for me. It is exercise for your brain. See
<http://en.wikipedia.org/wiki/Pragmatic_Buddhism> You can train your brain to
not react to negative sensations. I honestly believe this technique can help
you deal with your symptoms and lead a happy, productive life.

I learned from this group: <http://www.dhamma.org/> but there are many groups,
and the technique itself is simple - but I suggest you find someone to teach
you. Get a book, too. The man behind that site, Goenka,
<http://en.wikipedia.org/wiki/S._N._Goenka> had terrible migraines, and
searched for a technique to address his chronic pain until he found Vipassana.
There is a high barrier of entry to Goenka's courses however, as they are 10
days (of silence) long. There are also restrictions on health conditions to
enter a course, because they are very trying for healthy people, so you would
have to exclude much of the information you have shared with us to enter. If I
were you, I might do just that.

You can get started right now: [http://www.insightmeditationcenter.org/books-
articles/medita...](http://www.insightmeditationcenter.org/books-
articles/meditation-instruction/) Specifically, check out
[http://media.audiodharma.org/mp3files/2007-10-03_GilFronsdal...](http://media.audiodharma.org/mp3files/2007-10-03_GilFronsdal_IntroductionToMeditation_1of6.mp3)

You may not be able to cure your health problems. You can learn to deal with
them and lead a happy life.

------
itistoday
A lot of people have mentioned this already, and I see that you're aware, but
try to take another look at Lyme disease as a possible candidate. There's a
huge controversy over it that I'm sure you're aware of.

If you haven't seen the movie "Under Our Skin", go see it now. It's all about
the insanity surrounding Lyme disease, and basically the conclusion is that
you need to find yourself a real expert on Lyme disease, and unfortunately
they're not easy to find.

~~~
jacquesm
Yes, definitely seconded, it is a very tricky disease. Too many of the
symptoms match, especially the heat sensitivity is a strong one.

~~~
neurotech1
Hyperbaric Oxygen therapy can help Lyme disease.

------
dnsworks
One quick suggestion, ask your doctor about Provigil. It's sort of a wonder
drug for people with ADHD, Sleep Apnea, Narcolepsy, and a few other issues.

------
GrandMasterBirt
Just FYI:

Test for Lyme Disease often goes wrong. Lyme Disease is very difficult to
"catch" so the best thing is a test from many different parts of the body to
different labs and if you suspect it, then test again a few times.

If you came out positive could mean you have a strain in you. After 20 years
there is a possibility it is quite a strong strain. Thought it is a bit
strange it should have crippled your nervous system by now.

------
doc-film
This rings a few bells. In 1998 I became ill with prostatitis which followed
with serious downturn. Eventually I was diagnosed with ReA (reactive
arthritis). This is thought to be incurable AI disease. I did not fancy the
treatments to 'alleviate' the symptoms, nor the incurable label. I started a
quest to find the solution to this epidemic which over took almost every part
of my body, eyes, joints, (too much to list) etc etc. I started in the local
hospital library and after a month ran out of books to read, then went to the
British Library and started there. The resources in that building are just
what I needed. I tried every alternative treatment on the market, including
every cure and supplement with only worsening or without resolution. Given ReA
is so rare I was foced to study many other illnesses to try to get a grasp on
nature of the problem. I eventually started experimenting with antibiotics
(abx) but not in normal 2 week courses but long prolonged courses, treating
like one would for a chronic infection like TB. I must have been through 10-15
different abx, most with only side effects to talk about, but one Cipro did
something, despite being totally hard to take, (dieoff) after 3 weeks at 1.5g
per day I had to stop but did notice a slight change; after a few months break
I wanted to try again for a longer duration (6 weeks) since this was the
recommended course for prostatitis. I did and 2 weeks after that I remember
the day when it all lifted in a 'woosh', I was not home yet but the rampant
infection which was raging had been put down. Then I unfortunalty had a
hickup, colon went south and I thought for 6 months it was side effects from
the abx, yet it was actually a campylobacter infection which I know now is a
comon side effect of abx. despite tests by local drs and labs they did not
find this, I had to go to a private lab who found it and recommeded Cipro. It
cured that in a few weeks but that secondary infection caused much damage and
which has been yet another battle (tbc). The pockets of infection (back, left
eye, hard to get places etc.) were still not 100% and a lot of courses of
Biaxin did wonders to get it out of these places. Then I was limping along
with colon problems for years, the cure to this was high doses of Anti fungals
(AF), lamisil 250mg per day / 3 months, and nystatin or funglin (oral amp.
b.), this was very effective for about the first 3 months, but i carried on
for 18 months with these, but never got much more improvement, than after the
first 3 months lift. Then I found that I was totally allergic to Gluten, then
after another 6 months Dairy, and then Corn / Maize. After eliminating these
the colon started to improve but is still not 100% and I'm still battling to
get it 100%. B vitamins seem to be the latest aid. During this entire time I
have done mostly everything without the help of Doctors who have had their
hands tied and been unable to RX the treatments such as the abx etc. I have
bought many on the net and had a friendly pharmacist who sold me what I asked
for. There are good DRs out there though, 1/100 IMO. Good luck you will need
it!

Edit: I do not have the 'so-called' incurable ReA any more! I do question many
so-called AI diagnoses and believe many are infections. I'm not 100% but much
better, I have good and bad days still. The body is an amazing machine and
given the resources it will repair even from the most devastating damage.

------
stevoo
This is a job .... for Dr. House !

