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.
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.
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.
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.
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.
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).
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.
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.
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.
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.
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?
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.
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!
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.
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.)
I'm sure I've done the kind of intensive exercise you have in mind, at a period of high mental concentration such as college (I can't specifically remember as this is dragging on for over a decade now). I'm not the most active person in the world, but I've never been very physically lazy for an extended period - I've never been overweight, but I hardly could be considered athletic.
I remember being extremely pissed off with one particular doctor who was like: "this is all down to a lack of exercise". My response was something along the lines of: why aren't all fat people insomniacs so? (She wasn't a sleep specialist).
Adapt? My friend, I don't know how you cope! Some of the embarrassing effects include 'deafness' i.e. my brain switching off for a few seconds, so I literally don't 'hear' what people say (obviously disastrous for a work setting), difficulty in remembering a non-trivial set of instructions (I've become especially careful to write important stuff down immediately), stabbing pain in my eyes when working in front of a screen for an extended period....etc.
On that note, I'm going to gracefully bow out and toss and turn in bed for a few hours as it's 11:15 in western Europe currently and I've work in 10 hours time ;-)
Heh! Well, there was the time that I fell asleep -- complete with snoring -- while looking into a microscope at an electronics job.
Oh wait. That wasn't just one time.
On a more serious note: I also experienced a totally remarkable car wreck years ago, as a result of not sleeping. I fell asleep at the wheel, woke up in the center divider of northern highway 101, steered the car out, hit the concrete bumper with my front driver's tire while trying to shoot for an exit, went ass-backwards into a large drainage ditch, cartwheeled the car (!), flipped it, and finally rolled it up against a couple of massive redwoods. Somehow, I not only survived, but was almost completely unscathed.
It is a fucking miracle I didn't kill myself or hit anyone else on the road, and ever since then, I've taken my sleepiness a little more seriously.
And, a lot of overweight people don't sleep well, either for similar or unrelated reasons. But, either way, human bodies can be remarkably different machines.
Fuck me that's insane. To think something as seemingly innocuous as not sleeping can put your life in danger to such a degree. When I'm driving, I do feel my eyes getting heavy sometimes but I'm often stressed so the adrenaline keeps the ZZZ's at bay.
My father actually fell asleep at the wheel of the car years ago, crashed into a wall and went into a coma for three weeks. A huge number of accidents can be put down to fatigue apparently.
A US Army study showed that soldiers that missed sleep due to combat or whatever for a few nights actually performed worse at tasks than someone who was drunk.
You're absolutely right - the human body is an amazingly resilient machine. We pump ourselves full of crap we never evolved to eat (processed carbs, sugar and salt laden-shit), deprive ourselves of sleep and generally abuse our bodies to an incredible degree, but our bodies can repair themselves far better tha any machine humans will ever make!
Monster, RedBull, Rockstar, etc these things are pure evil. I honestly attribute a lot of my own medical maladies to a few years where I was sucking them down once a day. And I've experienced a lot of the symptoms in his article too. I'm no doctor but a detox from the energy drinks is a logical first step
Completely agree. Back in the mid 2000s I was drinking two Redbulls a day for several months to keep up the pace, when one particularly stressful day my heart literally skipped a beat. I could feel it in my chest just stop when it should have beat, then pick up beating again on the next one.
Scared the hell out of me, and I just knew it was the phenylalanine in Redbull. Quit cold turkey that day and haven't drunk a sip since. I get my caffeine from green tea now.
I almost never drink high-caffeine drinks. Pretty much all I've been drinking for the last few months is green tea, milk and water. I don't drink much alcohol either.
The only time I've drank Red Bull is the lead up to college finals when I absolutely needed an instant jolt - i justified this by telling myself that it was for the long-term good (good results down the line), not as a short-term crutch.
I'm not so naive to think that those energy drinks are anything but really, really bad for you.
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.
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)
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...
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?
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.
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).
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.
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.
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.
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.
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.
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.
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.
Chronic fatigue doesn't give you Hashimoto, and it doesn't give you a gammopathy. My point is simply that if there is a unifying diagnosis to be had, CFS is not it. (Though I am absolutely aware of Saint's Triad, so if that's what you're going for, I understand.) If you really suspect chronic fatigue, consider talking to someone at the Whittemore Peterson Institute in Reno, NV. (Disclosure: Am friends with one of the authors on their paper that identified that a high proportion of those with CFS harbor a novel virus. This research is not in my field.) NYT write-up: http://www.nytimes.com/2009/10/09/health/research/09virus.ht...
But truly, I am discussing this because I find it interesting per se, though I feel it is a bit of a side track.
Good reply, I don't know too much about the ins and outs; just layman reading and anecdotal experience. I remember being chronically fatigued (though it was not Chronic Fatigue Syndrome) for quite some time; what did the trick for me was simple: less carbohydrates (less calories, to be specific), more vegetables, and more animal protein (the Paleo Diet mixed with the Longevity Diet).
I also think people underestimate the body's ability to repair itself given the opportunity. I think fixing the diet and exercising would be worth while avenues of giving the body the break it needs. I've also been a big believer in fasting and/or juicing for a few days when I get sick, it seems to get wiped out much faster when I do that.
I notice, when I eat grain heavy foods (rice, and particularly wheat based foods) my allergies get worse and I feel "ickier". This correlates well with the description of Candida Albicans and the invasive behaviors the organism take on it, apparently, even makes you want to eat more bread (this is, unscientific, but it seems logical and has served me well thus far).
Something else I noticed as well: fatigue was often fixed/alleviated by consuming adrenal supplements...
There might not be a causal link between the Hashimoto and the CFS. All the symptoms described sound like CFS to me (my sister has had it for 15 years).
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.
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.
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.
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).
I am wracking my brain to try to remember these conversations from a couple years ago, but I am pretty sure you can't test for Lupus if you have Hashimoto's (and it's pretty hard to test for Lupus anyways). They just eliminated so many other things that they started treating them for Lupus and it helped enough they decided that is what it was. I will try to get more info from the source soon.
That sounds incorrect. Lupus and Hashimoto's can coexist. It's not something I know all that much about, but if anything, Hashimoto's, like many autoimmune diseases, is associated positively with others:
Among those with Hashimoto's, the relative risk for having lupus is 6.23-20.0. Thus, Hashimoto's is positively predictive. There is no reason that an inflammatory thyroiditis should mask ANA, anti-Ro, anti-La, etc. (If there is, though, please do tell me about it because that would be some very useful knowledge.)
You could very well be correct, I am trying to remember something I heard second hand a couple of years ago. But I emailed my relative who went through all this to find out exactly what happened. And I am pretty sure they have both Hashimoto's and Lupus, it was just that Hashimoto's made it more difficult to detect Lupus.
A large number of autoimmune conditions, including lupus, can be mediated by steroids such as prednisone - have you tried immunosuppression meds or other steroids?
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.
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.
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).
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.
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.
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.
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.
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.
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.
IgA is immunoglobulin A, which is likely directly related to your nasal congestion. The elevated levels could either be causing the congestion, or a result of the congestion.
Do they give you actual numbers, or just "normal"? I'm always more interested in the actual numbers, rather than someone's interpretation of them. (Even when the someone is a trusted expert in their field.)
According to the AARDA, there's no such thing as a test for all autoimmune diseases [1], which is surprising to me. You're probably going to have to submit to a very long series of tests, ruling out one possibility after another, unfortunately. A kind of reverse lottery.
And just FYI, I settled on an autoimmune disease for the following reasons: fatigue (common symptom for a heightened immune response); muscle pain (i.e., flu-like symptoms); numbness / loss of dexterity (nerve damage); nasal congestion (classic immune response).
Medical diagnosis can further be complicated by co-diseases, or other situations where something causes another series of symptoms as an unrelated side effect. i.e., you start with an infection of some kind, which presents a certain set of symptoms, but then you develop a rotten gut as a side-effect of your body's response to the infection, and then you get distracted looking for IBS, and assume that the IBS-like symptoms are causing the rest of the symptoms.
You might try focusing on the possibility of Lyme disease for a while, only because you did test positive for it, and AFAIK it's not a very well understood disease. There are a wide range of symptoms and other problems associated with it, and they can surface years after the initial infection. I think the majority of its effects are incurable but treatable, but I'm not terribly certain about this. The only reason I know anything about it at all is because it's endemic in my area, and there was a possibility that I was infected a few years ago.
Yeah, there's no way to test for all allergies, either - and autoimmunity is just an allergy to a protein you make yourself. I was shocked to discover this, but there are on the order of 100,000 different proteins in blood, and electrophoresis is the most general test for them. However, electrophoresis can only sort them by weight. So it's useless for antibodies, which are mostly of similar size.
To check for allergy to a specific allergen, they take the allergen, attach it to a radioactive particle, glue your antibodies to a plate, and see how radioactive the plate gets when you wash it in the tagged allergen.
Repeat for every allergen.
Really.
Somebody will come up with what I expect to be a nanotechnology-based antibody assay or inventory method and will make a freaking mint someday. It could be you! It could be me! But it's definitely an opportunity that's out there.
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?
I'd say autoimmune and/or endocrine -- there's a lot of overlap, given how many endocrine conditions involve autoimmune damage. While we're listing blood tests, I'd be interested in calcium, albumin, free T4 (TSH is usually enough to manage hypothyroidism, but it's worth checking in odd cases like this), cortisol, and testosterone.
Edit: Comment below says that cortisol and testosterone are normal, and that thyroiditis was "treated to within normal range" -- not clear if this is normal TSH or normal free T4.
The medical field is great at solving simple or common ailments, not so good at more complex diagnoses.
I always found it amazing that we even use medical professionals for this, an expert system with a medical assistant would be much superior to the current, for most cases, and I remember being told it has been proven so.
However, some cases are just bizarre, that they haven't come up before, or are mostly in someones head, for which there is very little anyone can do. Unless you are rich.
People can't solve problems like this one without experience in the medical field, which you're unlikely to find here.
Can I stress this? This person doesn't need medical advice from HN. What he needs is to keep seeing specialist doctors until he can find one that can diagnose him correctly. Dealing with the medical profession, especially in the US, takes a lot of energy that a person in this state does not have.
So instead of trying to guess at his disease, why don't people brainstorm the issue of how to get access to more doctors?
Here's one to start the ball rolling: hire a part-time personal assistance and make it their job to get you medical appointments. Okay, that's a possibly unrealistically expensive suggestion, and I am sure others can do better.
This person doesn't need medical advice from HN. What he needs is to keep seeing specialist doctors until he can find one that can diagnose him correctly
He's been doing that for 18 years, it's natural to try something different.
He's been doing that for 18 years, it's natural to try something different.
The likelihood of him not having found the right doctor vastly exceeds the notion that he can get a diagnosis on HN. Of course I certainly don't blame him for trying - but, really?
I am actually rather shocked that here is a person who basically says "I have this horrible disease and have trouble thinking straight" and people think the appropriate response is to suggest diet modifications.
From reading his account, I can see two conclusions: (a) he has not found the right doctor or (b) he is incurable. There is no point contemplating the latter, so the only recourse I see is helping him somehow get to the former. He needs a doctor who will take ownership of his issues, he needs a teaching hospital, he needs House MD - I don't know - but he needs help to keep trying doctors, not guesses at a diagnosis.
Upvoted. Going off on wild goose chases will waste more of OP's energy, money, and time. Quacks like homeopaths thrive on the troubles of exactly the kind of people who have tried other cures and are desperate.
Why is it not worth a shot to ask? I wouldn't necessarily ask for medical advice nor follow it, but there'd be that small chance someone else would know something worth pursuing with my doctor (like what seems to have happened in this topic).
For about 6 months on end this past year I had a laundry list of respiratory issues that several different doctors I went to couldn't figure out the root cause of. All anyone could do was to deal with the symptoms, try to come up with some kind of diagnosis, and hope that it'll fix whatever was going on. I was on at least half a dozen different meds ranging from a monthlong course of Levaquin to prednisone and nasal sprays and more at any given time, and of course none of that stuff would do anything about a nasty, persistent cough that would never go away (great timing with the H1N1 scare!).
So after too many xrays and ct scans and blood tests and blowing into things and who knows what more, I was really fed up. I had been to all sorts of specialists, general practice, even my dentist (sinusitis at some point, had to rule out anything to do with my teeth), and everyone was out of ideas. It was wrecking my relationships with some clients who thought I was giving them the flu, it was preventing me from even climbing up a flight of stairs on a bad day, the cough was bad enough that I'd wake up multiple times during the night, everyone and their mother thought I had a cold or the flu or $deity forbid H1N1... I was on the verge of crying when I was waiting for a flight at an airport when some woman that had sat down next to me decided standing up and away from me was preferable to being next to me coughing into my elbow away from her. And I didn't have anything contagious at that point. :/
I bounced ideas off some friends, I ranted on twitter and irc, went to one of the doctors suggested by someone I knew, and after mixing that all together, a specific combination of a few meds solved every problem I had. A little ridiculous to think about in the end, but my limited crowdsourcing worked for me. Even with the complete lack of domain-specific knowledge, it was a bunch of fresh pairs of eyes thinking things in their own way as I and all my then-doctors had started to become one with "we have no idea what's going on".
However, had any of my doctors pulled a House and ditched some choice assumptions about what happened with "99% of [their] patients" that had any one of my issues or "what happened in [my] medical history", I probably would have been much better off earlier. But I eventually (mini-crowdsourced and) met my House that assumed my medical history is tantamount to a lie and started with a blank slate. What everyone had assumed was the effect was a cause, where it was assumed something would work because it worked in the past was proven to be wrong, and now I'm here, minus most of the problems I had back then and managing the problems I can manage, happy and reasonably healthy today :)
I've had a continuous problem with sinus infections which always turn into bronchitis if untreated, which means I'm constantly on antibiotics, surgery barely helped, and last summer I tried to "heal myself" without antibiotics -- just for once -- and was doing fine for 1 month while exercising daily and sinus rinsing etc, etc, and after I took a 2-day break from exercise, I got so sick I thought I had pnuemonia, had to go to the emergency room.
I haven't been well since. I am always tired, wheezing, etc., that yes, doctors keep trying to treat as surface issues, with steroid inhalers and nose sprays (that I can't take because I'm extremely sensitive to steroids).
Haven't found a doctor yet who will really look at the whole history and figure out why I am like this now, as opposed to just treating the individual symptoms.
My brother has had somewhat similar symptoms for years. About a year ago he got a cranial x-ray for unrelated reasons, and the doctor discovered one of the largest sinusitis infections he'd ever seen. (Unfortunately, due primarily to living in a country without accessible medical care -- the United States -- he hasn't followed up on taking care of it.)
Also, make sure you keep an extremely clean and airy environment. Dust, mold, pollens, etc. will aggravate the condition.
I had multiple bouts of bronchitis and pneumonia and sinus infections and probably a cold or two and sometimes at the same time. Those were definitely diagnosed and treated as they came, but I had an underlying cough that would not go away. Everyone blamed the cough on lingering effects of the bronchitis and blamed the runny nose on the sinus infections and general breathing problems on the fact that I had just had (insert infection here)...so everyone treated that and just gave me way too much narcotic cough syrup so I can sleep at night.
What it really was was that I had all of those, but they weren't as severe or as lingering as everyone thought it was as the runny nose was primarily from allergies and cough from asthma that I thought I had "grown out" of years ago. Mind you, some of the drugs to treat the symptoms were still the same, but everyone was so focused on the obvious and on the past (that I had had asthma and it was successfully treated with primarily Advair) that nobody thought to realize that maybe, just maybe, it was back and triggered by something and that all these issues were also overblown as a result, and the same drugs wouldn't necessarily work this time around. Someone at some point suspected the right thing, but Advair used to work for me, and it didn't work this time around, and more than one had put me on prednisone at some point or another and that should have done something but it didn't make a big difference either, so that came and went off the list a couple times. On the flip side, they weren't so cavalier about antibiotics, as I kept on getting switched to new ones as the old one would either stop working or wasn't effective after a few days.
So with a fresh slate and with not making assumptions based on even as-recent-as-a-week-ago past, my House thought the infections were related (had enough antibiotics and more to mask the symptoms, but probably not gone altogether) and that my asthma was probably back and bothering me at the same time since if he ignored all the symptoms clearly and only associated with my infections, it was exactly asthma, rather than shoehorning that into "oh it's because of the bronchitis" cause that's what happens to "most people". In the end, one month of Levaquin seemed to work to obliterate my then-sinus infection, and the rest of it disappeared into thin air when I started a combination of Symbicort, predisone, Xyzal and Astepro. Unfortunately I doubt that would work well for you as half that are steroids :S
Soooo...I know when I had the sinus infections from hell, my neti pot was my best friend (every hour, if I could get away with it...), but I don't have any suggestions beyond that :( My story is more of a "people made assumptions and they were wrong about something so obvious" than a rare/hard to diagnose one.
Unfortunately, you're right, what helped you couldn't help me... I can't take Advair (although it kinda helped), because of anxiety attacks and hallucinations. I also can't take Levaquin! I took it once 5 years ago for a sinus infection, and had to stop in a couple days, because of stabbing pains in my ankles and elbows. Did you know that one of the side effects is listed as "tendon rupture"!? I panicked and stopped taking it, the doctor later agreed, but the pain lasted for weeks. So scary.
And I was a thin girl til I got an extremely rare side effect from a birth control shot called Depo Provera. They only put it in the literature years after it wrecked my body.
I'm screwed :)
EDIT: My complaint about the asthma is actually the opposite of yours. My doctors want to treat it as simple asthma, when I hadn't had symptoms for 12 years, until my misguided attempt to avoid antibiotics completely knocked me on my ass for 6 weeks.
The side effects of Levaquin still haunt me, despite having had none of them. It's been months, and I've heard stories about these issues appearing out of nowhere months later...still waiting for the tendon rupture to happen, heh.
I'm a girl too, and I avoid any suggestion of depo provera like the plague. I love the idea of the convenience (I am so bad with regularly timed pills, and am on nuvaring now), but the common issue of bone density loss alone steered me clear away, I can't imagine what happened to you :(
Honestly, I'd just consider getting multiple opinions. The surgeons will tell you to think about surgery, the various specialists will focus on your issues as it relates to their knowledge...no fault of their own, but finding the right person makes a huge difference. Good luck!
Wow! I had no idea those side effects could last so long. Maybe that's behind my sudden spraining of both ankles that happened months later? I'd always had floppy ankles, likely to fall over, but never really hurt myself when I did…
You're smart to avoid depo provera. I hope you encourage your friends too, as well. I didn't have any of the terrible side effects known at the time (eg. permanent bleeding) but I got glucose intolerance, which causes the body to respond crazy-like to carbohydrates of any kind, and caused me to gain weight no matter what I did.
I kept telling the docs, "Something is wrong!" and them saying "No, it'll even out, it's fine." or "Your appetite is just increased," even though my boyfriend backed me up that it was not. Jerks.
And of course the combination of depo+weight gain made me depressed and mentally foggy, and even less likely to advocate for myself, a nice one-two punch.
I gained so much weight, so fast, over 2 years, that my skin looks like a white-on-white zebra. I'll never look good in a bikini (even if I do manage to ever lose it all, which doesn't seem likely).
Wow! I had no idea those side effects could last so long. Maybe that's behind my sudden spraining of both ankles that happened months later? I'd always had floppy ankles, likely to fall over, but never really hurt myself when I did…
You're smart to avoid depo provera. I hope you encourage your friends too, as well. I didn't have any of the terrible side effects known at the time (eg. permanent bleeding) but I got glucose intolerance, which causes the body to respond crazy-like to carbohydrates of any kind, and caused me to gain weight no matter what I did.
I kept telling the docs, "Something is wrong!" and them saying "No, it'll even out, it's fine." or "Your appetite is just increased," even though my boyfriend backed me up that it was not. Jerks.
And of course the combination of depo+weight gain made me depressed and mentally foggy, and even less likely to advocate for myself, a nice one-two punch.
I gained so much weight, so fast, over 2 years, that my skin looks like a white-on-white zebra. I'll never look good in a bikini (even if I do manage to ever lose it all, which doesn't seem likely).
I think the fact that one can go from doctor to doctor for 18 years and not get a proper diagnosis speaks volumes about medicine today. We collectively know so much about the human body and its afflictions, but yet so many doctors seem clueless.
"I am actually rather shocked that here is a person who basically says "I have this horrible disease and have trouble thinking straight" and people think the appropriate response is to suggest diet modifications."
You are making the common mistake of assuming that people will just believe everything people write on the internet. Why not give the OP the benefit of the doubt and assume that he can sort through the answers in a rational enough way.
And it could still be diet related, you know... Even this clumsiness which sounds like a scary brain tumor symptom, who knows, maybe it is just lack of blood sugar or whatever (I have no idea).
Also, how do you suggest he finds the right doctor, if not by somebodies recommendation? Isn't stuff like that the primary reason that people talk and exchange information?
OP here. I've been looking up symptoms and chasing specialists for years. The idea of an assistant (patient advocate) is really appealing though. That's the kind of thing I've always hoped to find in a Primary Care doc, but so far haven't found. It seems cosmically unfair that sick people lack the energy to rustle up the resources to get themselves properly treated, but that's reality.
The problem is that after the while, the experimentation doctors tend to do can become damaging. The OP already mentions one operation with negative net effect, as well as taking anti depressants for years (they tend to have side effects).
If you go to a specialist in X, he will at least experiment with some of the treatments for X (hence antidepressants if you go see a psychiatrist). I think that is just how medicine works most of the time: exclude some things from the symptoms, then experiment with cures. If you do that for several years, it becomes really trying.
I wonder if a nice database of everything that has been tried on a patient could possibly help a bit? Doesn't Google provide some kind of service for that?
hire a part-time personal assistance and make it their job to get you medical appointments.
Too late to edit my own post, but I have since found that there are actually professional medical advocates - a random example I found by looking for somebody in Ohio is this guy:
Sure they seem to specialise in hospitalised people, but that seems to be because they are the very ill ones. I think the OP qualifies. Perhaps it would be possible to hire such a person to navigate the maze of getting to the right specialist, or how to obtain the most appropriate referrals - or any of these mundane matters that are so hard to tackle when one is simply exhausted.
I am a bit appalled by your candor at his serious problems with regard to finding a fix. Medical professionals have utterly failed him for 18 years (half a lifetime for some). He may not find what he needs to take/do and get a prescription from HN, but he may get a great diagnosis (like B12 deficiency due to pernicious anemia) that may end up being true.
I think you're putting non-E.R. doctors on a pedestal that more often than not they do not deserve to be on. The fact is that they diagnose based on symptoms - sites have been created that can easily guide a person towards most of the easy-to-diagnose problems they are experiencing without any doctor involved.
With that said, I do think most holistic medicine is a load of crap. Diagnosing issues is something that we - as a logical group - are very good at doing based on symptoms. That most doctors don't have time to spend 100 manhours on one case is another problem with seeking a regular doctor to diagnose complex issues.
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.
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?)?
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.
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.
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...
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)?
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.
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.
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[ 4.1 ms ] story [ 332 ms ] threadI 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.
Here it is:
http://news.ycombinator.com/item?id=868325 - So.. what the hell's wrong with you shooter?
It is a long text post but it lists symptoms that are remarkably similar to the OP's.
Shooter said:
Basically I had multiple infections (both viral and bacterial) that were slowly eating me alive.
and
Anyway, I tested positive for at least a dozen viral and bacterial infections, but they could have potentially all come from one tick bite. I think the estimate is that 30% of all infected ticks carry at least one other co-infection. So, theoretically, I could have been bitten by just one really 'sick tick.' Or I could have picked up other infections once my immune system was compromised by an initial infection.
http://news.ycombinator.com/item?id=868325
HD could explain the fatigue, muscle tension, and reduced motor skills. However, it would likely also (but not always) be accompanied by other behavioral changes and cognitive changes.
You're also less likely due to age but i wouldn't rule it out on that basis from experience.
HD would not account for your numbness and dizziness.
Also curious if Wilson's Disease could be a more accurate fit. Fortunately, it's treatable.
http://en.wikipedia.org/wiki/Huntingtons_disease http://en.wikipedia.org/wiki/Wilsons_disease
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.
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.
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.
You mention hypothyroidism and having seem an endocrinologist; what tests did he/she do?
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!
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.
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.)
I remember being extremely pissed off with one particular doctor who was like: "this is all down to a lack of exercise". My response was something along the lines of: why aren't all fat people insomniacs so? (She wasn't a sleep specialist).
Adapt? My friend, I don't know how you cope! Some of the embarrassing effects include 'deafness' i.e. my brain switching off for a few seconds, so I literally don't 'hear' what people say (obviously disastrous for a work setting), difficulty in remembering a non-trivial set of instructions (I've become especially careful to write important stuff down immediately), stabbing pain in my eyes when working in front of a screen for an extended period....etc.
On that note, I'm going to gracefully bow out and toss and turn in bed for a few hours as it's 11:15 in western Europe currently and I've work in 10 hours time ;-)
Heh! Well, there was the time that I fell asleep -- complete with snoring -- while looking into a microscope at an electronics job.
Oh wait. That wasn't just one time.
On a more serious note: I also experienced a totally remarkable car wreck years ago, as a result of not sleeping. I fell asleep at the wheel, woke up in the center divider of northern highway 101, steered the car out, hit the concrete bumper with my front driver's tire while trying to shoot for an exit, went ass-backwards into a large drainage ditch, cartwheeled the car (!), flipped it, and finally rolled it up against a couple of massive redwoods. Somehow, I not only survived, but was almost completely unscathed.
It is a fucking miracle I didn't kill myself or hit anyone else on the road, and ever since then, I've taken my sleepiness a little more seriously.
And, a lot of overweight people don't sleep well, either for similar or unrelated reasons. But, either way, human bodies can be remarkably different machines.
My father actually fell asleep at the wheel of the car years ago, crashed into a wall and went into a coma for three weeks. A huge number of accidents can be put down to fatigue apparently.
A US Army study showed that soldiers that missed sleep due to combat or whatever for a few nights actually performed worse at tasks than someone who was drunk.
You're absolutely right - the human body is an amazingly resilient machine. We pump ourselves full of crap we never evolved to eat (processed carbs, sugar and salt laden-shit), deprive ourselves of sleep and generally abuse our bodies to an incredible degree, but our bodies can repair themselves far better tha any machine humans will ever make!
Scared the hell out of me, and I just knew it was the phenylalanine in Redbull. Quit cold turkey that day and haven't drunk a sip since. I get my caffeine from green tea now.
http://en.wikipedia.org/wiki/Red_Bull#Cardiovascular_effects
The only time I've drank Red Bull is the lead up to college finals when I absolutely needed an instant jolt - i justified this by telling myself that it was for the long-term good (good results down the line), not as a short-term crutch.
I'm not so naive to think that those energy drinks are anything but really, really bad for you.
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.
[1] Steve Pavlina's already a crank--his business partner and ex-wife is a telephone psychic who claims to contact your dead relatives.
(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).
Now where is my vicodin?
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.
I wish you luck in getting to the bottom of this...
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. ?
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.
Have you changed careers?
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/...
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.
That suggestion is posted a bit higher, but it's interesting that you noticed it as well.
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.
Rick http://celiacFacts.wordpress.com
But truly, I am discussing this because I find it interesting per se, though I feel it is a bit of a side track.
I also think people underestimate the body's ability to repair itself given the opportunity. I think fixing the diet and exercising would be worth while avenues of giving the body the break it needs. I've also been a big believer in fasting and/or juicing for a few days when I get sick, it seems to get wiped out much faster when I do that.
I notice, when I eat grain heavy foods (rice, and particularly wheat based foods) my allergies get worse and I feel "ickier". This correlates well with the description of Candida Albicans and the invasive behaviors the organism take on it, apparently, even makes you want to eat more bread (this is, unscientific, but it seems logical and has served me well thus far).
Something else I noticed as well: fatigue was often fixed/alleviated by consuming adrenal supplements...
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.
Until, like you said, it is.
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.
http://www.mdconsult.com/das/article/body/203965646-2/jorg=j...
Among those with Hashimoto's, the relative risk for having lupus is 6.23-20.0. Thus, Hashimoto's is positively predictive. There is no reason that an inflammatory thyroiditis should mask ANA, anti-Ro, anti-La, etc. (If there is, though, please do tell me about it because that would be some very useful knowledge.)
http://www.mayoclinic.com/health/hemochromatosis/ds00455/dse...
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.
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).
I honestly can't recall if the initial improvement when taking D started to subside before or after starting the 50K prescription.
He talks about bit about Vitamin A and Vitamin K2 at the bottom of the post; supplementing both might be something to consider.
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.
Thanks for your reply, foenix.
I really hope your ailment is just transient. Please be sure to follow up on HN if/when you figure it out.
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.
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.
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.
Do they give you actual numbers, or just "normal"? I'm always more interested in the actual numbers, rather than someone's interpretation of them. (Even when the someone is a trusted expert in their field.)
According to the AARDA, there's no such thing as a test for all autoimmune diseases [1], which is surprising to me. You're probably going to have to submit to a very long series of tests, ruling out one possibility after another, unfortunately. A kind of reverse lottery.
And just FYI, I settled on an autoimmune disease for the following reasons: fatigue (common symptom for a heightened immune response); muscle pain (i.e., flu-like symptoms); numbness / loss of dexterity (nerve damage); nasal congestion (classic immune response).
Medical diagnosis can further be complicated by co-diseases, or other situations where something causes another series of symptoms as an unrelated side effect. i.e., you start with an infection of some kind, which presents a certain set of symptoms, but then you develop a rotten gut as a side-effect of your body's response to the infection, and then you get distracted looking for IBS, and assume that the IBS-like symptoms are causing the rest of the symptoms.
You might try focusing on the possibility of Lyme disease for a while, only because you did test positive for it, and AFAIK it's not a very well understood disease. There are a wide range of symptoms and other problems associated with it, and they can surface years after the initial infection. I think the majority of its effects are incurable but treatable, but I'm not terribly certain about this. The only reason I know anything about it at all is because it's endemic in my area, and there was a possibility that I was infected a few years ago.
Good luck.
[1]: http://www.aarda.org/infocus_article.php?ID=15
To check for allergy to a specific allergen, they take the allergen, attach it to a radioactive particle, glue your antibodies to a plate, and see how radioactive the plate gets when you wash it in the tagged allergen.
Repeat for every allergen.
Really.
Somebody will come up with what I expect to be a nanotechnology-based antibody assay or inventory method and will make a freaking mint someday. It could be you! It could be me! But it's definitely an opportunity that's out there.
> To check for allergy to a specific allergen, [...] Repeat for every allergen.
Hah! If only we could run a binary search.
I'd say autoimmune and/or endocrine -- there's a lot of overlap, given how many endocrine conditions involve autoimmune damage. While we're listing blood tests, I'd be interested in calcium, albumin, free T4 (TSH is usually enough to manage hypothyroidism, but it's worth checking in odd cases like this), cortisol, and testosterone.
Edit: Comment below says that cortisol and testosterone are normal, and that thyroiditis was "treated to within normal range" -- not clear if this is normal TSH or normal free T4.
That said, I agree that without specific details, its harder to know whats going on.
I always found it amazing that we even use medical professionals for this, an expert system with a medical assistant would be much superior to the current, for most cases, and I remember being told it has been proven so.
However, some cases are just bizarre, that they haven't come up before, or are mostly in someones head, for which there is very little anyone can do. Unless you are rich.
Can I stress this? This person doesn't need medical advice from HN. What he needs is to keep seeing specialist doctors until he can find one that can diagnose him correctly. Dealing with the medical profession, especially in the US, takes a lot of energy that a person in this state does not have.
So instead of trying to guess at his disease, why don't people brainstorm the issue of how to get access to more doctors?
Here's one to start the ball rolling: hire a part-time personal assistance and make it their job to get you medical appointments. Okay, that's a possibly unrealistically expensive suggestion, and I am sure others can do better.
He's been doing that for 18 years, it's natural to try something different.
The likelihood of him not having found the right doctor vastly exceeds the notion that he can get a diagnosis on HN. Of course I certainly don't blame him for trying - but, really?
I am actually rather shocked that here is a person who basically says "I have this horrible disease and have trouble thinking straight" and people think the appropriate response is to suggest diet modifications.
From reading his account, I can see two conclusions: (a) he has not found the right doctor or (b) he is incurable. There is no point contemplating the latter, so the only recourse I see is helping him somehow get to the former. He needs a doctor who will take ownership of his issues, he needs a teaching hospital, he needs House MD - I don't know - but he needs help to keep trying doctors, not guesses at a diagnosis.
I'd be delighted to be proven wrong.
For about 6 months on end this past year I had a laundry list of respiratory issues that several different doctors I went to couldn't figure out the root cause of. All anyone could do was to deal with the symptoms, try to come up with some kind of diagnosis, and hope that it'll fix whatever was going on. I was on at least half a dozen different meds ranging from a monthlong course of Levaquin to prednisone and nasal sprays and more at any given time, and of course none of that stuff would do anything about a nasty, persistent cough that would never go away (great timing with the H1N1 scare!).
So after too many xrays and ct scans and blood tests and blowing into things and who knows what more, I was really fed up. I had been to all sorts of specialists, general practice, even my dentist (sinusitis at some point, had to rule out anything to do with my teeth), and everyone was out of ideas. It was wrecking my relationships with some clients who thought I was giving them the flu, it was preventing me from even climbing up a flight of stairs on a bad day, the cough was bad enough that I'd wake up multiple times during the night, everyone and their mother thought I had a cold or the flu or $deity forbid H1N1... I was on the verge of crying when I was waiting for a flight at an airport when some woman that had sat down next to me decided standing up and away from me was preferable to being next to me coughing into my elbow away from her. And I didn't have anything contagious at that point. :/
I bounced ideas off some friends, I ranted on twitter and irc, went to one of the doctors suggested by someone I knew, and after mixing that all together, a specific combination of a few meds solved every problem I had. A little ridiculous to think about in the end, but my limited crowdsourcing worked for me. Even with the complete lack of domain-specific knowledge, it was a bunch of fresh pairs of eyes thinking things in their own way as I and all my then-doctors had started to become one with "we have no idea what's going on".
However, had any of my doctors pulled a House and ditched some choice assumptions about what happened with "99% of [their] patients" that had any one of my issues or "what happened in [my] medical history", I probably would have been much better off earlier. But I eventually (mini-crowdsourced and) met my House that assumed my medical history is tantamount to a lie and started with a blank slate. What everyone had assumed was the effect was a cause, where it was assumed something would work because it worked in the past was proven to be wrong, and now I'm here, minus most of the problems I had back then and managing the problems I can manage, happy and reasonably healthy today :)
I've had a continuous problem with sinus infections which always turn into bronchitis if untreated, which means I'm constantly on antibiotics, surgery barely helped, and last summer I tried to "heal myself" without antibiotics -- just for once -- and was doing fine for 1 month while exercising daily and sinus rinsing etc, etc, and after I took a 2-day break from exercise, I got so sick I thought I had pnuemonia, had to go to the emergency room.
I haven't been well since. I am always tired, wheezing, etc., that yes, doctors keep trying to treat as surface issues, with steroid inhalers and nose sprays (that I can't take because I'm extremely sensitive to steroids).
Haven't found a doctor yet who will really look at the whole history and figure out why I am like this now, as opposed to just treating the individual symptoms.
I'm at the end of my rope, too…
Also, make sure you keep an extremely clean and airy environment. Dust, mold, pollens, etc. will aggravate the condition.
I had multiple bouts of bronchitis and pneumonia and sinus infections and probably a cold or two and sometimes at the same time. Those were definitely diagnosed and treated as they came, but I had an underlying cough that would not go away. Everyone blamed the cough on lingering effects of the bronchitis and blamed the runny nose on the sinus infections and general breathing problems on the fact that I had just had (insert infection here)...so everyone treated that and just gave me way too much narcotic cough syrup so I can sleep at night.
What it really was was that I had all of those, but they weren't as severe or as lingering as everyone thought it was as the runny nose was primarily from allergies and cough from asthma that I thought I had "grown out" of years ago. Mind you, some of the drugs to treat the symptoms were still the same, but everyone was so focused on the obvious and on the past (that I had had asthma and it was successfully treated with primarily Advair) that nobody thought to realize that maybe, just maybe, it was back and triggered by something and that all these issues were also overblown as a result, and the same drugs wouldn't necessarily work this time around. Someone at some point suspected the right thing, but Advair used to work for me, and it didn't work this time around, and more than one had put me on prednisone at some point or another and that should have done something but it didn't make a big difference either, so that came and went off the list a couple times. On the flip side, they weren't so cavalier about antibiotics, as I kept on getting switched to new ones as the old one would either stop working or wasn't effective after a few days.
So with a fresh slate and with not making assumptions based on even as-recent-as-a-week-ago past, my House thought the infections were related (had enough antibiotics and more to mask the symptoms, but probably not gone altogether) and that my asthma was probably back and bothering me at the same time since if he ignored all the symptoms clearly and only associated with my infections, it was exactly asthma, rather than shoehorning that into "oh it's because of the bronchitis" cause that's what happens to "most people". In the end, one month of Levaquin seemed to work to obliterate my then-sinus infection, and the rest of it disappeared into thin air when I started a combination of Symbicort, predisone, Xyzal and Astepro. Unfortunately I doubt that would work well for you as half that are steroids :S
Soooo...I know when I had the sinus infections from hell, my neti pot was my best friend (every hour, if I could get away with it...), but I don't have any suggestions beyond that :( My story is more of a "people made assumptions and they were wrong about something so obvious" than a rare/hard to diagnose one.
Unfortunately, you're right, what helped you couldn't help me... I can't take Advair (although it kinda helped), because of anxiety attacks and hallucinations. I also can't take Levaquin! I took it once 5 years ago for a sinus infection, and had to stop in a couple days, because of stabbing pains in my ankles and elbows. Did you know that one of the side effects is listed as "tendon rupture"!? I panicked and stopped taking it, the doctor later agreed, but the pain lasted for weeks. So scary.
And I was a thin girl til I got an extremely rare side effect from a birth control shot called Depo Provera. They only put it in the literature years after it wrecked my body.
I'm screwed :)
EDIT: My complaint about the asthma is actually the opposite of yours. My doctors want to treat it as simple asthma, when I hadn't had symptoms for 12 years, until my misguided attempt to avoid antibiotics completely knocked me on my ass for 6 weeks.
I'm a girl too, and I avoid any suggestion of depo provera like the plague. I love the idea of the convenience (I am so bad with regularly timed pills, and am on nuvaring now), but the common issue of bone density loss alone steered me clear away, I can't imagine what happened to you :(
Honestly, I'd just consider getting multiple opinions. The surgeons will tell you to think about surgery, the various specialists will focus on your issues as it relates to their knowledge...no fault of their own, but finding the right person makes a huge difference. Good luck!
You're smart to avoid depo provera. I hope you encourage your friends too, as well. I didn't have any of the terrible side effects known at the time (eg. permanent bleeding) but I got glucose intolerance, which causes the body to respond crazy-like to carbohydrates of any kind, and caused me to gain weight no matter what I did.
I kept telling the docs, "Something is wrong!" and them saying "No, it'll even out, it's fine." or "Your appetite is just increased," even though my boyfriend backed me up that it was not. Jerks.
And of course the combination of depo+weight gain made me depressed and mentally foggy, and even less likely to advocate for myself, a nice one-two punch.
I gained so much weight, so fast, over 2 years, that my skin looks like a white-on-white zebra. I'll never look good in a bikini (even if I do manage to ever lose it all, which doesn't seem likely).
You're smart to avoid depo provera. I hope you encourage your friends too, as well. I didn't have any of the terrible side effects known at the time (eg. permanent bleeding) but I got glucose intolerance, which causes the body to respond crazy-like to carbohydrates of any kind, and caused me to gain weight no matter what I did.
I kept telling the docs, "Something is wrong!" and them saying "No, it'll even out, it's fine." or "Your appetite is just increased," even though my boyfriend backed me up that it was not. Jerks.
And of course the combination of depo+weight gain made me depressed and mentally foggy, and even less likely to advocate for myself, a nice one-two punch.
I gained so much weight, so fast, over 2 years, that my skin looks like a white-on-white zebra. I'll never look good in a bikini (even if I do manage to ever lose it all, which doesn't seem likely).
You are making the common mistake of assuming that people will just believe everything people write on the internet. Why not give the OP the benefit of the doubt and assume that he can sort through the answers in a rational enough way.
And it could still be diet related, you know... Even this clumsiness which sounds like a scary brain tumor symptom, who knows, maybe it is just lack of blood sugar or whatever (I have no idea).
Also, how do you suggest he finds the right doctor, if not by somebodies recommendation? Isn't stuff like that the primary reason that people talk and exchange information?
If you go to a specialist in X, he will at least experiment with some of the treatments for X (hence antidepressants if you go see a psychiatrist). I think that is just how medicine works most of the time: exclude some things from the symptoms, then experiment with cures. If you do that for several years, it becomes really trying.
I wonder if a nice database of everything that has been tried on a patient could possibly help a bit? Doesn't Google provide some kind of service for that?
Too late to edit my own post, but I have since found that there are actually professional medical advocates - a random example I found by looking for somebody in Ohio is this guy:
http://www.thefamilyadvocate.com/what.html
(just to give you the idea)
Sure they seem to specialise in hospitalised people, but that seems to be because they are the very ill ones. I think the OP qualifies. Perhaps it would be possible to hire such a person to navigate the maze of getting to the right specialist, or how to obtain the most appropriate referrals - or any of these mundane matters that are so hard to tackle when one is simply exhausted.
I think you're putting non-E.R. doctors on a pedestal that more often than not they do not deserve to be on. The fact is that they diagnose based on symptoms - sites have been created that can easily guide a person towards most of the easy-to-diagnose problems they are experiencing without any doctor involved.
With that said, I do think most holistic medicine is a load of crap. Diagnosing issues is something that we - as a logical group - are very good at doing based on symptoms. That most doctors don't have time to spend 100 manhours on one case is another problem with seeking a regular doctor to diagnose complex issues.
also - I feel like it could be something spinal - but I am not a doctor.
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.
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?)?
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.
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?
Do you have a CBC (blood count) and CMP (metabolic panel, things like calcium)?
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.