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Re:Save My Life - help a fellow HN'er by savemylife on Wednesday June 02, 2010 @05:29PM (#1399472)
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.
Re:Save My Life - help a fellow HN'er by NathanKP on Wednesday June 02, 2010 @05:36PM (#1399492)
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.

Re:Save My Life - help a fellow HN'er by ErrantX on Wednesday June 02, 2010 @06:14PM (#1399648)
Lymes disease is definitely one to test; it's one of those classic ones that gets passed over (dig around the net and you will find plenty of stories of people who hunted for years for a solution before finding out this was the cause).
Re:Save My Life - help a fellow HN'er by Stasyan on Wednesday June 02, 2010 @05:46PM (#1399543)
Re:Save My Life - help a fellow HN'er by NathanKP on Wednesday June 02, 2010 @05:49PM (#1399553)
Bingo!

Here it is:

http://news.ycombinator.com/item?id=868325 - So.. what the hell's wrong with you shooter?

It is a long text post but it lists symptoms that are remarkably similar to the OP's.

Shooter said:

Basically I had multiple infections (both viral and bacterial) that were slowly eating me alive.

and

Anyway, I tested positive for at least a dozen viral and bacterial infections, but they could have potentially all come from one tick bite. I think the estimate is that 30% of all infected ticks carry at least one other co-infection. So, theoretically, I could have been bitten by just one really 'sick tick.' Or I could have picked up other infections once my immune system was compromised by an initial infection.

Re:Save My Life - help a fellow HN'er by savemylife on Wednesday June 02, 2010 @06:43PM (#1399730)
It's not me.
Re:Save My Life - help a fellow HN'er by Shooter on Wednesday June 02, 2010 @07:09PM (#1399802)
I'd be happy to correspond with you privately, if you think I could help.
Re:Save My Life - help a fellow HN'er by NathanKP on Wednesday June 02, 2010 @07:04PM (#1399787)
Okay, but maybe some of the info in his long HN post can help you:

http://news.ycombinator.com/item?id=868325

Re:Save My Life - help a fellow HN'er by lief79 on Wednesday June 02, 2010 @05:54PM (#1399580)
In case you haven't already noticed,fibromyalgia seems to be a catch all diagnosis. It's a set of symptoms, but they aren't often tied to anything.

A few of the systems seem to remind me of my mother whom has recently been diagnosed with a pinched nerve in combination with known severe TMJ and migraines. (She apparently had a continuous migraine for about 15 years).

My main advice would be to seek out the experts, and try to find the ones who are able to admit what they don't know. UPenn is the first place that properly addressed my Mom's TMJ, and that in itself has made a huge difference. She's ended up helping them modify some of the textbooks.

Just as general advice, I'd highly focus on neurologists at first. You could also consider sleep centers, as the good ones do extensive tests and collect information that is harder to gather at any other location. I wish you luck.

Re:Save My Life - help a fellow HN'er by elight on Wednesday June 02, 2010 @05:40PM (#1399515)
IANAD but several symptoms sound like possible fits for Huntington's Disease. However, given you've had these symptoms for 18 years, HD doesn't sound too likely.

HD could explain the fatigue, muscle tension, and reduced motor skills. However, it would likely also (but not always) be accompanied by other behavioral changes and cognitive changes.

You're also less likely due to age but i wouldn't rule it out on that basis from experience.

HD would not account for your numbness and dizziness.

Also curious if Wilson's Disease could be a more accurate fit. Fortunately, it's treatable.

http://en.wikipedia.org/wiki/Huntingtons_disease http://en.wikipedia.org/wiki/Wilsons_disease

Re:Save My Life - help a fellow HN'er by jim_dot on Wednesday June 02, 2010 @05:36PM (#1399491)
Have you tried a psychologist?
Re:Save My Life - help a fellow HN'er by savemylife on Wednesday June 02, 2010 @05:43PM (#1399531)
Yes. 3 different ones. General verdict: you seem to have some depression, but not primary. They told me that anyone who is sick for a long period of time will almost certainly develop some kind of secondary depression.
Re:Save My Life - help a fellow HN'er by aquinn on Wednesday June 02, 2010 @06:43PM (#1399732)
I really like STDP/EDT as a form of therapy. See if this resonates at all with you. http://www.istdp.ca/Somatization.pdf
Re:Save My Life - help a fellow HN'er by rmk on Wednesday June 02, 2010 @05:42PM (#1399522)
The OP says he did about 9 months of psychotherapy. I think that means he did try a psychologist.
Re:Save My Life - help a fellow HN'er by simonsquiff on Wednesday June 02, 2010 @07:15PM (#1399814)
Psychotherapy is very different to psychology. Psychotherapy is much more old school, classic conversational therapy as derived from Freud. Here in the UK (but much less so in the US) it has a poor reputation as unscientific and with weak research evidence. Psychology is generally a more experimentally driven, more science based approach, and shouldn't be lumped in the same category. Essentially, psychological treatment can help when psychotherapy has not; all the same this appears to be physiological rather than mental.