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Save My Life - help a fellow HN'er

• anr 16y ago
  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/0452265886 http://www.amazon.com/Medical-Detectives-Truman-Talley/dp/04...
• elboheme 16y ago
  Have they checked your vitamin B12 levels? Your folic acid levels? And RPR for syphilis? Could be neurosyphilis.
  • savemylife 16y ago
    Tested negative for Syphilis.
• deleted 16y ago
  [deleted]
• savemylife 16y ago
  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.
• nfnaaron 16y ago
  (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 16y ago
    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.
• cperciva 16y ago
  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?
• bdickason 16y ago
  I can't help but I'm upvoting this in hopes that someone who can will read it.
• jimmyjim 16y ago
  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 16y ago
    Yes definitely try Reddit, remember a post a few months back where someone needed medical help and Reddit made a big difference
  • neilk 16y ago
    Ask Metafilter can be a good source of advice too.
  • deleted 16y ago
    [deleted]
• patrickk 16y ago
  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!
  • thaumaturgy 16y ago
    Have you tried regular -- three times a week, at least -- vigorous exercise?
    • patrickk 16y ago
      Yes - two summers ago I was gymming 5/6 days per week. It may or may not have helped short-term (hard to tell as I was mentally switched off plus I could have long lie-ins in the mornings). Long-term it certainly didn't help. Incidentally, I'm forcing myself to start gymming regularly in my new workplace so hopefully this will help. To answer your question, yes, I've tried regular exercise, especially walking, and it hasn't helped noticeably. But I am going to persist with it. Thanks for the suggestion.
      • thaumaturgy 16y ago
        Walking doesn't count, unfortunately. Gymming is kind of OK, but a lot of people seem to develop a regular routine -- a particular set of exercises -- that their body adapts to after a while. You're going for serious exercise here, the endorphin rushes from prolonged all-out physical activity. i.e., soccer, two-person volleyball, basketball, tennis, racquetball, ultimate frisbee, etc. It's definitely a short term fix that only works for as long as you're doing it. Or, you just reconcile yourself to not sleeping, and adapt. :-) (I'm a chronic insomniac also.)
• ukdm 16y ago
  You mention that less sleep makes you feel better, Have you tried Polyphasic sleep? http://www.stevepavlina.com/blog/2005/10/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 16y ago
    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 16y ago
      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 16y ago
        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?
  • philwelch 16y ago
    I don't think inflicting sleep deprivation on yourself is a good idea for a healthy person. It's an even worse idea for someone with a medical condition that causes tons of fatigue. Polyphasic sleep is quite frankly a crank theory[1]--I'm sure people can function on it, but people can function on untreated severe sleep apnea for years as well and in both cases you have chronic sleep deprivation. (And, obviously, anyone committed enough to polyphasic sleep to actually continue doing it for very long would have a pretty strong confirmation bias, so there's no trusting personal anecdotes.) [1] Steve Pavlina's already a crank--his business partner and ex-wife is a telephone psychic who claims to contact your dead relatives.
• strlen 16y ago
  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 16y ago
    It's not lupus! It's never lupus! Now where is my vicodin?
    • strlen 16y ago
      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.
  • thesystemis 16y ago
    Just wanted to second this -- my father has lupus, and shares many of your symptoms including the severe fatigue compounded by exposure to sunlight. I wish you luck in getting to the bottom of this...
• wazoox 16y ago
  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 16y ago
    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 16y ago
      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.
    • wazoox 16y ago
      Chicken pox is an interesting point IMO. I had chicken pox as a child, and it came back to haunt me as a zoster 20 years later. I think various pox can stay dormant forever, and provoke serious diseases later on.
  • gojomo 16y ago
    Ditto on: Have you moved? Especially -- to a place with radically different climate, vegetation, humidity, sun-times? Have you changed careers?
• chaosmachine 16y ago
  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 16y ago
    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.
• Ixiaus 16y ago
  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/dp/0071597174/ref=sr_1_1?ie=UTF8&s=books&qid=1275514841&sr=8-1 http://www.amazon.com/Body-Science-Research-Program-Results/...
  • yanowitz 16y ago
    Diet could be a huge factor. I would keep a food log along with notes on how you are feeling. Therevan sometimes be a lag between consumption and effect, but you may notice patterns. I would also try the above diet (look into a paleo low carb diet). And, look into Crossfit (Crossfit.com) in your area. Good affiliates will slowly scale you up based on your ability. That an diet might be a huge help, though it'll take a good month of clean eating to know If it helps. Good luck, please post a followup on your plan of attack.
    • Tichy 16y ago
      Now that you mention it, I feel reminded of a friend who can not eat gluten (as in wheat and other cereals). Definitely something that would be worth testing, I suppose.
      • GFischer 16y ago
        That would be a Celiac. That suggestion is posted a bit higher, but it's interesting that you noticed it as well.
        • pbhjpbhj 16y ago
          I thought it was spelt coeliac?
          • GFischer 16y ago
            Apparently it can be spelled both ways: http://en.wikipedia.org/wiki/Coeliac_disease http://en.wikipedia.org/wiki/Coeliac_disease I'm a non-native english speaker, over here it's spelled "Celiaco" (in Spanish) so that influenced me. Many foods are labeled "celiac-friendly" over here (Uruguay) with a no-wheat symbol.
• ax0n 16y ago
  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.
• jmintz 16y ago
  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.
  • tomstuart 16y ago
    It's never lupus.
    • jmintz 16y ago
      Even on House people have gotten Lupus. "It's never Lupus" is what made it so hard for Dr. House to diagnose. ;)
      • whimsy 16y ago
        This is actually a sort of running joke related to House. Lupus is a common suggestion on House, particularly during a specific season, even though it's never Lupus. Until, like you said, it is.
  • savemylife 16y ago
    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 16y ago
• einarvollset 16y ago
  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.
• Keyframe 16y ago
  What about your iron, magnesium and potassium levels? I've read you've tried antidepressants, but has psychosomatics been ruled out completely?
  • strebler 16y ago
    Low iron can definitely cause a lot of the fatigue symptoms he's describing...but if the doctors missed that, it's scary.
    • lotharbot 16y ago
      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/dsection=symptoms http://www.mayoclinic.com/health/hemochromatosis/ds00455/dse...
• jimmybot 16y ago
  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.
  • Tichy 16y ago
    I am surprised that doctors did not at least look into this. Why was there "seemingly" a Vitamin D shortage? Couldn't it provide a clue as to what is going on? It doesn't sound to me as if the OP just didn't get enough sunlight. Maybe some process is running amok that uses a lot of Vitamin D? I don't think normal doctors really do much of clue hunting, unfortunately. Perhaps some research institute could be found(ed?) that has a more goal oriented approach. I think day-to-day medicine is usually more trial and error than logic (which it could be).
  • savemylife 16y ago
    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 16y ago
      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-not-just-another-vitamin.html http://wholehealthsource.blogspot.com/2008/10/vitamin-d-its-... He talks about bit about Vitamin A and Vitamin K2 at the bottom of the post; supplementing both might be something to consider.
• foenix 16y ago
  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.
  • carbocation 16y ago
    He says he has had MRIs to rule out MS. Missing a pituitary lesion on a cranial MR would basically be negligence.
  • savemylife 16y ago
    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 16y ago
      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.
    • foenix 16y ago
• thaumaturgy 16y ago
  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.
  • Tichy 16y ago
    I think what he can hope for is somebody with similar problems or somebody knowing somebody with similar problems. If doctors who can treat this (or at least diagnose it) are rare, finding the right one could become difficult, and crowd sourcing might be worth a try. Also, maybe the hacker mentality would be to somehow find what is going on by oneself (debugging the body). While I have nowhere as severe symptoms, I have also often suffered from fatigue and sleeplessness. I keep thinking I should keep track of my condition more rigorously to maybe identify the problem. For starters, keep detailed logs (things like foods eaten, exercise, mood, sleep cycles etc) - maybe a pattern might emerge? In fact I hope to write "an app for that" soon.
  • savemylife 16y ago
    Yes, lots of tests. Mostly normal except what I mentioned in the blog- Hashimoto's Thyroiditis (i.e. low thyroid), treated to within normal range using Synthroid and Cytomel. That and "elevated IgA". Quote from doctor: "blood testosterone is normal, blood studies for hydrocortisone, prolactin, red and white blood cells and inflammation are normal. The only other blood study which is not normal is your serum IgA level, which is slightly high." Body temp usually a bit below 98.6 (which I'm told is actually quite normal). Urine is usually slightly yellow.
    • Vivtek 16y ago
      "Slightly high" means it probably doesn't mean a lot. Frustrating.
• auston 16y ago
  I'd recommend x-posting to http://hackermed.com/ http://hackermed.com/ also - I feel like it could be something spinal - but I am not a doctor.
• ashishbharthi 16y ago
  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.
• Tichy 16y ago
  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?)?
• electromagnetic 16y ago
  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.
• uptown 16y ago
  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_disease http://en.wikipedia.org/wiki/Creutzfeldt%E2%80%93Jakob_disea... Two more questions. 1. Have you ever been a drug user? 2. Have you ever received a blood transfusion?
  • savemylife 16y ago
    No and no.
  • runT1ME 16y ago
    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...
• carbocation 16y ago
  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 16y ago
  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 16y ago
    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.
• gcv 16y ago
  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 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/ http://www.choosingraw.com/
  • Vivtek 16y ago
    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.
    • deleted 16y ago
      [deleted]
    • stoney 16y ago
      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.
• chasingsparks 16y ago
  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 http://www.rarediseases.org/search/orglist.html and see if anything stands out, then demand someone test you for it.
  • savemylife 16y ago
    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 16y ago
      Oh hells yes. This describes our past decade. Keep in mind that you can, eventually, figure it out.
  • andrew1 16y ago
    > When you hear hoofbeats behind you, don't expect to see a zebra. Unless you're in parts of Africa, in which case you might well see a zebra. Apparently in South Africa medical students are told that when you see a small bird on a branch, think sparrow rather than canary. Same principle, different animals!
  • asmithmd1 16y ago
    My father-in-law is an MD and he told me he was taught: "an un-common diagnosis is un-commonly correct"
• dzlobin 16y ago
  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 http://en.wikipedia.org/wiki/Polyarteritis_nodosa
• Kilimanjaro 16y ago
  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 16y ago
    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 16y ago
      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.
• rksprst 16y ago
  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 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 16y ago
    Thanks rksprst. Aren't Celiac Disease sufferers usually thin, unable to gain weight? That's not me.
    • Vivtek 16y ago
      Not necessarily - it just seems that way because wheat figures so heavily in the Western diet. I don't think Celiac is likely, but you can just not eat wheat for a week and see if it makes a difference. (Read every label if you're trying that.)
      • solost 16y ago
        Thinness is not an issue, since sugar is not off limits. A week won't do it on the diet change, I had to go nearly 3 months before my system got back to normal. Amd Vivtek is right if you want to test this just read every label and do some research for example soy sauce is out, but it just isn't obvious. As far as this being a possibility, it doesn't sound right, but since it is pretty easy to test for the next tiem you have a blood test you can have them check it if you want.
        • tyweir 16y ago
          > Thinness is not an issue, since sugar is not off limits. Paleo eating excludes refined sugars completely, and asks you to reduce fruit. Meat and veg, nuts and seeds, some fruit, no grains, no dairy. > A week won't do it on the diet change, Totally agree here. And switching from a traditional high-carb, low-fat diet to paleo leads to 2 or 3 weeks of feeling like crap. We're 5 weeks into our Paleo Challenge at the gym I own, and most people are feeling like a million bucks. We do our best to impress upon them that the first 2-3 weeks will be difficult.
• Vivtek 16y ago
  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).
  • 16y ago
• eavc 16y ago
  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.
• waleedka 16y ago
  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.
• itistoday 16y ago
  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 16y ago
    Yes, definitely seconded, it is a very tricky disease. Too many of the symptoms match, especially the heat sensitivity is a strong one.
    • neurotech1 16y ago
      Hyperbaric Oxygen therapy can help Lyme disease.
    • deleted 16y ago
      [deleted]
  • savemylife 16y ago
    I have the DVD. :-) I was on antibiotics for a year.
    • Shooter 16y ago
      I was on antibiotics for about 15 months before I had what you could call a dramatic improvement for some symptoms. It can take longer. Spirochetes can form cysts and biofilms, etc. Co-infections can complicate things. Different strains can react to meds differently, etc. I'm still on meds more than two years after diagnosis. In any case, it can take years to get better in some cases. And some symptoms may just be from permanent damage or from the (theorized) auto-immune response to Lyme. Some of my symptoms (endocarditis, myocarditis, brain lesions, etc.) are definitely permanent. But I'm thankful I didn't give up on antibiotics because of the "experts."
• jacquesm 16y ago
  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...) ?
  • ars 16y ago
    I had the exact same thought. This sounds very much like chronic Lyme Disease. Please see this http://news.ycombinator.com/item?id=868325 http://news.ycombinator.com/item?id=868325 as well, for someone else who sounds like he went through almost exactly the same thing as you. Here's a quote from wikipedia: "Up to one third of Lyme disease patients who have completed a course of antibiotic treatment continue to have symptoms such as severe fatigue, sleep disturbance, and cognitive difficulties, with these symptoms being severe in about 2% of cases."
  • gfodor 16y ago
    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.
• apinstein 16y ago
  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!
• martian 16y ago
  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.
• herdrick 16y ago
  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 16y ago
  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.
• grandalf 16y ago
  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 16y ago
    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?
    • grandalf 16y ago
      Just go to Tamarindo first and spend a few days there until you find a slightly more isolated place to go. Tamarindo is touristy but very small and so one does not need to go far to find untouched beaches and very inexpensive lodging.
    • hyperbovine 16y ago
      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.
    • mrtron 16y ago
      You just go. There are very few places in the world you can't just show up and get by with no language skills, knowledge of the area with a very little bit of money.
• neurotech1 16y ago
  Have you had any labs to assess liver function? Do you have a history of significant alcohol consumption?
• edw519 16y ago
  If I had your symptoms, this is absolutely the first thing I would do: http://drfuhrman.com/ask/default.aspx 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 16y ago
    This is the first thing I'd do: http://quackwatch.org/01QuackeryRelatedTopics/spotquack.html http://quackwatch.org/01QuackeryRelatedTopics/spotquack.html
    • edw519 16y ago
      ^^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 16y ago
        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.
• eekfuh 16y ago
  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.
• Artifex 16y ago
  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?
• mey 16y ago
  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/Hyperthyroidism http://en.wikipedia.org/wiki/Hypothyroidism 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.
• SkyMarshal 16y ago
  Test for Pernicious Anemia that prevents the digestive system from absorbing Vitamin B12: http://en.wikipedia.org/wiki/Pernicious_anemia 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.
  • cyunker 16y ago
    I second this. I had a close relative suffer from this. The doctors didn't catch it for years, but once they diagnosed it, and she started taking the B12 shots, it made a huge difference.
  • mistermann 16y ago
    Just curious, should a lack of B12 not show us in a simple blood test of some sort?
    • Ixiaus 16y ago
      It should. I've known a few people that inhaled Nitrous recreationally (which is known for depleting B12 very rapidly); it was a common side effect (other than it being an anxiolytic) that you would lose sensation in your outer extremities. People that do too much can do serious damage to the body, similar to the symptoms listed by the OP and the root commenter.
    • flatline 16y ago
      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.
• ihodes 16y ago
  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.
• deleted 16y ago
  [deleted]
• mmaunder 16y ago
  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!
  • mistermann 16y ago
    I agree. For a situation this serious, you really should update your post with more thorough details. Also, I noticed earlier you eat a lot of processed meals (but the healthier ones). Really, if you haven't tried purely basic healthy eating and exercise and monitoring the results daily, not to be rude, but one has to wonder how hard you're trying.
  • jrockway 16y ago
    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.
• viraptor 16y ago
  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 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.
• mwerty 16y ago
  Go see the mayo clinic.
  • YuriNiyazov 16y ago
    Yup! (hey dude, long time!)
    • mwerty 16y ago
      indeed - lets catch up... will contact you this weekend.
• rumpelstiltskin 16y ago
  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.
• dnsworks 16y ago
  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.
• icey 16y ago
  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).
• kmfrk 16y ago
  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.
• csmeder 16y ago
  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&dq=think%20and%20grow%20rich&pg=PP1#v=onepage&q&f=false http://books.google.com/books?id=c86H36mgiM4C&lpg=PP1&#3... if you have the strength/time 2) Hemmingways Hack: http://www.secondactive.com/2009/08/boost-your-productivity-with-hemingways.html http://www.secondactive.com/2009/08/boost-your-productivity-... 3) And finally the Pomodoro Technique http://www.pomodorotechnique.com http://www.pomodorotechnique.com This has hemmingsways hack built in. If done right (read the PDF) it is amazing.
• phreanix 16y ago
  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 http://www.cdc.gov/ncidod/dvbid/lyme/index.htm
• mikecane 16y ago
  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.
• rit 16y ago
  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).
• techiferous 16y ago
  I'd see a neurologist.
• ericd 16y ago
  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 16y ago
    Yes, I spent a year getting treated for Lyme by a specialist. Tons of antibiotics, no improvement.
• nearestneighbor 16y ago
  Out of curiosity, who paid for your year-long chronic Lyme treatment? It's not an official disease, as far as I know.
• metamemetics 16y ago
  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) 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 16y ago
    Iron Deficiency is pretty well understood afaik, it's tested in any normal "general" blood test and would be quickly picked up on.
• andrewcamel 16y ago
  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.
• johnl 16y ago
  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?
• savemylife 16y ago
  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.
• lolgoats 16y ago
  Epstein-Barr Virus, Good luck.
• pigbucket 16y ago
  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.
• jlmendezbonini 16y ago
  I once saw a TED conference[1] about a project called Patients Like Me (http://www.patientslikeme.com/ 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_brother_inspired.html http://www.ted.com/talks/jamie_heywood_the_big_idea_my_broth...
• vmmenon 16y ago
  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 ...
• darrenkopp 16y ago
  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.
• tomlin 16y ago
  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.
• doc-film 16y ago
  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.
• CptMauli 16y ago
  I don't understand why nobody has suggested http://en.wikipedia.org/wiki/Sarcoidosis 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.
• koevet 16y ago
  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 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?
• stevoo 16y ago
  This is a job .... for Dr. House !
• aufreak3 16y ago
  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.
• scotty79 16y ago
  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.
• olliesaunders 16y ago
  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?
• rsheridan6 16y ago
  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 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.
• nlanier 16y ago
  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.
• marr 16y ago
  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..]
• jhollingworth 16y ago
  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 16y ago
    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.
• briguy 16y ago
  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.
• car 16y ago
  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!
• adrianwaj 16y ago
  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/ http://lymemd.blogspot.com/ Don't waste time.
• ecq 16y ago
  i have a friend who was suffering from mercury poisoning - he suffered from extreme fatigue, etc. you may have something in your house that's causing all these.
• GrandMasterBirt 16y ago
  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.
• jcromartie 16y ago
  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?
• rjurney 16y ago
  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 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 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/ 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 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/meditation-instruction/ http://www.insightmeditationcenter.org/books-articles/medita... Specifically, check out http://media.audiodharma.org/mp3files/2007-10-03_GilFronsdal_IntroductionToMeditation_1of6.mp3 http://media.audiodharma.org/mp3files/2007-10-03_GilFronsdal... You may not be able to cure your health problems. You can learn to deal with them and lead a happy life.
• sambe 16y ago
  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?