5 ms·

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 hel

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.

jim_dot 16y ago
Have you tried a psychologist?
- rmk 16y ago
  The OP says he did about 9 months of psychotherapy. I think that means he did try a psychologist.
  - simonsquiff 16y ago
    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.
- savemylife 16y ago
  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.
  - aquinn 16y ago
    I really like STDP/EDT as a form of therapy. See if this resonates at all with you. http://www.istdp.ca/Somatization.pdf http://www.istdp.ca/Somatization.pdf
NathanKP 16y ago
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.
- Stasyan 16y ago
  Try: http://searchyc.com/ http://searchyc.com/
  - NathanKP 16y ago
    Bingo! Here it is: http://news.ycombinator.com/item?id=868325 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.
- ErrantX 16y ago
  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).
- savemylife 16y ago
  It's not me.
elight 16y ago
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/Huntingtons_disease http://en.wikipedia.org/wiki/Wilsons_disease http://en.wikipedia.org/wiki/Wilsons_disease
lief79 16y ago
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.

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.

jim_dot 16y ago

Have you tried a psychologist?

rmk 16y ago
The OP says he did about 9 months of psychotherapy. I think that means he did try a psychologist.
- simonsquiff 16y ago
  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.
savemylife 16y ago
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.
- aquinn 16y ago
  I really like STDP/EDT as a form of therapy. See if this resonates at all with you. http://www.istdp.ca/Somatization.pdf http://www.istdp.ca/Somatization.pdf

NathanKP 16y ago

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.

Stasyan 16y ago
Try: http://searchyc.com/ http://searchyc.com/
- NathanKP 16y ago
  Bingo! Here it is: http://news.ycombinator.com/item?id=868325 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.
ErrantX 16y ago
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).
savemylife 16y ago
It's not me.

elight 16y ago

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

lief79 16y ago

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.