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So...what the hell's wrong with you, Shooter?
324 points by Shooter 2991 days ago | hide | past | web | favorite | 126 comments
[NOTE: This post is both personal and medical in nature and only about hacking in the sense that it is about searching for a solution to a complex problem. Some of the “HN is for hacking only”–types may not want to waste their time reading it. It’s also extremely long, but I don’t have or want a blog right now. You’ve been warned.]

This is my answer to apu's question to me on another thread about ALS (and, specifically, my misdiagnosis with ALS and other illnesses):

Q: "If you don't mind me asking, what was the final diagnosis? How was it discovered? And how are you coping?"

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

I started having migratory shooting pains, chronic joint pain, extreme fatigue, and rapid weight gain years ago. (I gained 100 pounds in about 4 months, with absolutely no change in my diet or exercise program. I went from somewhat athletic to fatigued fat-ass that slept 20 hours a day after a brief flu-like period.) They initially tested me for thyroid and pituitary tumors. That first MRI is how they found the first spots on my brain - before they were full-fledged lesions. They were just hyper-intensive spots and 'plaques.' It's more common, by the way, to lose tons of weight with infections, but the infections affected my hormones in a way that made me balloon up.

I kept getting new symptoms over the years. Sleep disorders, aphasia, tremors, severe chest pains, left arm paralysis, left side of body paralysis, neck-down paralysis, memory loss, tinnitus, passing out, chemical sensitivity, etc. etc. In the end, I probably could have been Stephen Hawking's stunt double appearance-wise. As I said in the other thread, I was (mis)diagnosed with Parkinsons, Alzheimers, MS, CFS/FM, and ALS along the way - each time based on my symptom progression and test results. Technically, I still have many of the other things I was diagnosed with based on symptoms and test results - by clinical definition - but they were not the underlying, causative issues. They were just the icing on the cake.

I saw at least 22 doctors over the years, including some at top hospitals (Mayo,etc.) A few of the doctors thought I was nuts, because of the sheer number of symptoms. One doctor didn't even finish the exam and commented that it was either all psychosomatic or else I was the unluckiest bastard ever and I had 25+ different diseases. Most doctors would just space out at some point and start treating whatever their specialty (or first thought) was. I had enough symptoms and bad test results to keep them all busy. If I was seeing an endocrinologist, for example, she would try to treat just the endocrine issues (the infections affected my endocrine system, so my hormones were waaaaaay out of whack. One endocrinologist said I should be in medical textbooks because of my crazy high/low hormone levels.) I tested positive for some autoimmune disorders, so the rheumatologist kept busy. I have sleep disorders (again because of the infections), so I was given a CPAP and sleep meds by a sleep specialist. I have severe migraines (lesions!), so migraine specialists put me on migraine meds. Etc. etc. Not all these meds at once, of course. The infections were playing havoc with my brain, heart, and nervous system...and my endocrine and immune system were along for the ride. I had a 2-3 year period where it felt like I was having multiple heart attacks every day. I’m amazed my wife didn’t leave me.

The multi-systemic nature and the fact that certain symptoms tends to reinforce or mask each other made it very difficult to figure anything out. When you have certain infections, for example, your body will naturally retain heavy metals and toxins from the environment - all on its own - in a self-protective attempt to kill off the invaders. So I tested off the charts for toxic metals and the ‘environmental specialist’ thought that was the underlying problem. But, of course, it wasn't. They cleared most of the metals and I still had all the symptoms. I had all of these heart symptoms, but most of my tests came back normal. Normal stress test, normal basic EKG, etc. They didn’t find any heart issues until they did less-common tests (tilt-table testing, etc.) I had enormous trouble finding a physician who was willing to really try to figure out the underlying cause of everything instead of just treating individual symptoms. I didn’t want to be on 80+ meds for the rest of my (possibly short) life and not even know what the hell was wrong with me.

I eventually narrowed down what I personally thought I had, based on my own research and background. Neuroborreliosis (neurologic Lyme disease) was one of my guesses, because I had done an extensive forestry research project at one point before my illness and I knew I had been bitten by ticks that may have been infected. I had never had a rash, though. And I didn't think any of my ‘guesses’, individually, could explain my vast array of symptoms.

I finally went to this doctor that was supposed to be an amazing diagnostician - “Dr. House without the 'tude”, I was told . I started reading him my list of symptoms - in chronological order. (It was one of the ways I had learned to cope with the discouraging doctor visits...if I was staring at a sheet of my notes, I couldn't get pissed because the doctors were rolling their eyes at me. I also needed the notes because my memories, and sometimes my speech, were completely shot.) Usually, the doctors would stop me fairly quickly when I started listing symptoms. This guy listened intently, and then started accurately guessing the next symptom on the list before I could even say it. He did that for about 7-8 symptoms. He gave me the most accurate description of some of my symptoms...more accurate than I could even muster. ["Does it feel like someone is squeezing your heart with their hands and won't let it expand?" "Does it feel like you're being stabbed with a cattle prod right here?" etc.] I often had trouble choosing the proper words to convey certain symptoms, in part because I knew it sounded crazy. But he was nodding the whole time and seemed sincere. He said he thought I had a major environmental toxin problem (heavy metals, chemical sensitivity, etc.) OR I had one or more vector-borne infectious diseases. He said either thing could potentially explain all of my symptoms, and that he leaned toward the latter because of the migratory nature of some of the symptoms. He was amazed I had never been tested for some infections, despite having been to some of the top hospitals in the country. The fact that my shooting pains were often migratory was one of the main things that had made some of the doctors think I was a loon. This doctor says, “Uh, DUH, it usually feels like the pains are moving around because they are - the things that are causing them are moving around, both in your body and in your brain!”

I had already been down the toxin path, so I was tested for a range of vector-borne diseases. I had almost all of them that I was tested for. Lyme, Babesia, Ehrlichiosis, etc. etc. Plus a liberal dose of virii at very high levels. I had had some of them so long that I was no longer showing a normal antibody response, but I had other telltale markers (specific cell parts on tests, etc.). [The accuracy, availability, and expense of these tests is another tangent I’ll avoid right now.]

Oddly enough, once this doctor correctly diagnosed me he refused to treat me. The insurance companies really give doctors who treat chronic infections a hard time, because the long-term treatment of certain infections is more expensive that treating a late-stage AIDs or brain cancer patient. Some doctors - including at least one Nobel laureate nominee - have lost their medical licenses or been forced to stop treating infected patients because of insurance company influence. It's a very complicated, political issue. Very frustrating. Too complicated to get into here. Anyway, this doctor said he wanted to treat me, but was literally scared to do so for fear of losing his medical license or his ability to offer insurance plans. [There is an award-winning documentary called UnderOurSkin (http://underourskin.com/) that explores "chronic Lyme", and it gets into the insurance, political, and patent issues, etc. It also explores a theoretical link between Lyme and other diseases. It's very good. It doesn't go into the co-infection issue much, because it is Lyme-specific - but it gives a great overview. The documentary trailer is at: http://underourskin.com/watch.html One of the guys in it is a physician that was also misdiagnosed with ALS, and there’s a baseball player that was misdiagnosed, Amy Tan (Joy Luck Club author) is also in it.

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. No way to know for sure. [Oh, and the fact that I never had a rash didn’t mean anything because 50% or more of infected ticks don’t cause a rash at all.] Only a certain percentage of people that are infected with some of these diseases develop chronic issues, so I may have had a weak spot in my immune system due to genetics or something. That’s one area of research they’re exploring. I know they’ve found at lease one statistically significant genetic anomaly that predisposes you to getting sicker with at least one of the viruses.

Some people - even lauded medical professionals - think that most infections can be killed off fairly easily with short-term antibiotics or antivirals (which is part of the debate in that documentary I mention.) That’s one of the arguments the insurance companies use. There are many mitigating factors, though, and most animal studies/vivisections say something else entirely. Some infections have biofilms that protect them. Some form cysts that protect them. Some infections grow drug-resistant. Some meds don't cross the blood-brain barrier. Different people have different immune responses. Etc. etc. The medicines themselves are very dangerous long-term, and you also have the serious problem that the infections release toxins as they die off...so by killing them you usually get worse in the short-term. The toxins released can kill additional tissue or trigger a stroke or heart attack because of the other symptoms. It's a weird balancing act between getting a medicine to work without making the infections resistant or triggering too much of a toxin/autoimmune response. It’s drug hacking, in a way. I’ve had two strokes. One because of a misdiagnosis when they put me on steroids and I had a major inflammatory response and once after I was properly diagnosed because I wasn't fast enough on the trigger to recognize a change in symptoms when I was pulsing between two antibiotics.

By the time I was properly diagnosed, I had permanent damage to my brain (lesions, some may heal), heart (cardiomyopathy,etc.), mitochondria (extrinsic mitochondrial disease - the infections ate the lipids from cells, among other things), and central nervous system (advanced neuropathy, etc.) I also have the hormone, sleep, and autoimmune issues. I've been on various antibiotics, antifungals, and antivirals for about 15 months. And pain meds. I only decided I had my final, correct diagnosis because this was the first logical answer that explained literally everything, had confirming test results, and allowed me to actually start getting better over time once I started treatment, toxin setbacks aside. Some of my symptoms have completely disappeared, but some remain. Mobility-wise, I've went from a wheelchair to a walker to now only needing a cane sometimes. I still have some memory loss, some aphasia, some numbness, some shooting pains, etc. - but I'm 80-90% better than when I started treatment. Not only in frequency of symptoms that remain, but in their actual intensity. I mainly see an infectious diseases specialist now, and he keeps warning me that I will not continuously get better but will instead have a rollercoaster ride until I level off at my final “condition” – because of the toxins, immune response, and residual damage.

They're not sure exactly how much of the damage is permanent. Some of the lesions are, for sure, and the mitochondrial damage is fairly severe (I technically have a small fraction of the energy, literally, of a normal person.) I'm amazed by the improvements already, so I'm still hopeful. My wife is pregnant with out first child, and everyone is scared/nervous how I will handle it. I still pass out occasionally, so some family members don't want me to hold my own kid. (Admittedly, I've fallen down stairs a few times after passing out.) Insurance has already stopped paying on certain meds and will most likely eventually stop on others. One of my antibiotics is $2500 a week, because the stent goes directly by the heart and you have to have a home health nurse change it to (ironically) reduce the risk of infection. I’m relatively fortunate that I’ve been able to get and afford my treatments thus far. I’m very fortunate that I didn’t have a completely untreatable disease. I also think this post should win an award for biggest “TMI” (Too Much Information) ever in the history of HN.

I am assuming you are an American citizen. If you haven't already, you need to:

1) call your Congressperson's local office (not DC) and ask for someone in constituent services who works with health care issues. Do this tomorrow. If your insurance company is denying you any care, and you have a paper trail, they should help. If your Rep can't help, then contact your two Senators' offices. Generally, Reps are much better with this sort of constituent service.

2) call your local Fox affiliate and tell them your story. (November sweeps are coming up, and this is a perfect post-House nighttime news story).

3) put up a web page that has your story, pictures, and easily found contact information for the follow up press stories that will occur.

This is your best path to making sure you don't get denied coverage from your insurance company (and it's amazing they haven't found a way to drop you yet) for the benefits that you are entitled to.

There are literally thousands of people with similar stories that are more articulate - and less bitter and angry - than I am. And the media is slowly picking up on these issues. http://underourskin.com/blog/ recently mentioned, for example, the change in stance of Good Morning America's medical correspondent over the course of a year. Enough people are getting sick and raising a ruckus that there are finally some changes being made for the better and there is starting to be a more open dialogue. There is still a long way to go, though.

I'm more of a behind-the-scenes type person. I have worked in trying to get legislation passed on these issues, and I've donated time and money to some of the organizations that try to help (legal defense funds for physicians, research studies, physician education grants, public education and outreach, etc.)

My insurance company has tried to drop me, BTW, repeatedly. It's a constant battle. My wife, fortunately, is a Director at a major research hospital and she has a great deal of experience in battling insurance companies. And I'm very fortunate in being able to cover the cost of what they will not cover, at least for now. Many are not so lucky. Some states have enacted legislation to force insurers to meet minimum standards for these diseases, but most states let insurers get away with writing people off or even making it impossible for people to get diagnosed initially.

I think you misunderstood me - I'm not talking about policy/legislative changes. I'm talking about having their office fight, as your wife does, with the insurance companies on your behalf. This is what "constituent services" does.

No, I understood. And I really appreciate your intentions. I just addressed the things that were most relevant to me in more detail. I do have congressman fight insurance companies on my behalf. But, I'm very lucky because of my wife and finances at this point in my life (finally), so I think I can have a bigger impact by thinking outside of my own problems a bit.

One of the people that was very helpful to me in finding treatment (and her sister) are in the documentary I mention, for example, and she died from Lyme complications after filming because she was denied adequate treatment for so long. I know others that have died due to Lyme and associated vector-borne diseases. (A celebrity reference for the HN crowd: Mary McDonnell of Donnie Darko and Battlestar Galactica is an activist in fighting Lyme and associated tick diseases that I occasionally see because she had a family member die of Lyme.) In sum, people are dying - and wishing they could die - because of these diseases, so I also wanted to address other actions I have taken and that others can also take.

"My wife, fortunately, is a Director at a major research hospital"

Holy cow, you're fortunate (all things considered).

Maybe the bitterness and anger is a good thing. You should be angry, I sure as hell would be. We all should be, your story is horrifying. But I think you're in an amazing position, and may not realize it. Your wife is a director at a research hospital, and, while I don't know who you are personally, I'll assume you're well connected in the tech world (otherwise why would you post this here). You obviously know very intimately what is wrong with the healthcare system.

That's a very unique position of power, whether you think so or not. You have the ability to affect great change, especially with what's happening with health care in the U.S. right now. You -apparently- have some money (at least more than I do), connections, an amazing story and anger, a great motivator.

I think everyone can understand if you can't, or you won't, but if it's in you, step up, pull strings, work behind the scenes, work in the spotlight, tell your story, influence who you can and get this fixed. This is still the greatest country in the world, and the ability for citizens to step up and fix what's broken is what makes it great.

That's just my two cents, for what it's worth. And my apologies for the semi-patriotic rant at the end there. ;) I wish you the best as you continue this battle.

It seems awful to me that all of that effort is needed just to make sure your not screwed over by the insurance company :(

Or is it just the norm and Im not used to it?

As an example of how frustrating it is: to get treatment covered by a US insurer for some infections (like, say, Lyme) you usually have to have two different tests that both have positive results, in a specific order. You have to test positive on an initial, fairly inaccurate test...and then you have to follow that result with a positive test on a [relatively] more thorough and accurate test. But some of these (patented) tests are based on just a single species of the organism. (There are a couple hundred species of Borrelia, IIRC, which is the spirochete family that causes Lyme. So, if you don't happen to have that 1 in 2XX species of bacteria, then you will likely not test positive in the exact way they want you to in order to 'earn' treatment.) And the longer you've been infected and the more serious your symptoms, the less likely you are to test positive because your antibody response diminishes over time. "You can't just skip ahead to the more accurate and thorough test now, silly, that's cheating." (?!) If you have a regional strain of bacteria that isn't recognized as a cause of 'Lyme', like 'STARI', then you're probably just out of luck completely.

The tests were not even intended for this diagnostic purpose by the CDC, but they are being used that way by insurance companies in order to exclude people from treatment. The tests are meant to be used for statistical tracking purposes only. Oh, and some of the people that are fighting long-term treatment and the development and acceptance of new tests are the very people that hold the patents on the existing tests. There are already more accurate tests available, but insurance companies will simply not accept them.

Speaking from personal experience, it is the norm.

In the US you are completely on your own, and your insurance company is not your friend; no matter how dutiful you were in paying your premiums. If you have a chronic, treatable condition, expect to fight it out with your insurance company 2 to 3 times a year over whether or not they will live up to their contractual obligations.

It is my considered opinion that if Obama wanted to lever the healthcare debate around to actual change, the only tool he would need are the RICO statutes. And I don't think his prosecutors would find it difficult to bring cases.

Ouch, I cant believe such a basic right is being so abused in your country!

Well I did because I was over there a few weeks ago visiting my cousin and she ranted about it - but she is a super-hardline liberal so I obviously took her comments with care (bit of truth, bit of OTT). Sounds like she might have been spot on!

No, haven't you heard? Health insurance in America is the best in the world! Obama only wants to change it because he's a Commie!


Perhaps a solution to the problem of chronic, treatable conditions is to make health insurance not pay for them.

In short, turn insurance back into insurance (protection against low probability, high cost events).

Wait, WTF? Isn't getting bitten by SuperTick exactly the sort of low probability, high cost event insurance is for? Just because something is chronic doesn't make it low cost.

and also - who else would pay for it?

I'm not seeing how getting bitten by a supertick is chronic. I was responding to the meta-problem (insurance not paying for chronic conditions), not the OP's specific problem.

It sounds like you work for an insurance company. If you start along this path, they will find an incidental causation for every chronic affliction.

The problem isn't the acute supertick bite, but the chronic, expensive condition that arises from it.

The intersection of chronic, treatable conditions and low probability, high cost events is not empty. You could find a condition with any combination of being chronic, acute, low probability, high probability, low cost, or high cost.

What you're really looking for is getting insurance out of covering expected medical expenses, but the problem is that doctors and hospital charge higher prices to the uninsured. I had a medical bill once that was denied by insurance, and the hospital wanted something like $12,000. Later we got the insurance to pay, and the hospital only charged them $2,000 or so.

A related problem is that the tax code favors insurance companies by providing a tax break to employers, which is why most Americans get insurance through their employer.

Most hospitals have a person who's job it is to deal with insurance companies for you.

Changing to a public plan isn't going to make it better (since they will still be trying to control costs by not treating unnecessary things).

The one thing that will make it better is more integration, but then you have people complaining that the insurance companies are telling doctors what to do.

There is no perfect way to both: control costs by challenging doctors on what they bill, and at the same time not making it hard for people to get the services they need.

That's interesting.

I wasnt directly suggesting it was reason to support a public plan btw. Just that it sounds pretty stinky.

I also would add that I think you've got the wrong "problem".

control costs by challenging doctors on what they bill, and at the same time not making it hard for people to get the services they need

Is never an issue over here [UK] (not just because of the public aspect).

I think in the UK the insurance people tell the doctors what to do. But they hide it well, and it doesn't seem to cause a problem. (Or maybe it just doesn't bother the people as much, the US has a more independent culture.)

Could a doctor in the UK prescribe an experimental treatment? Could he prescribe it and get insurance to pay for it? I bet not without a fight.

Perhaps the difference is that there, the fight is behind the scenes so the patient never knows about it (if it's rejected I bet the doctor never even mentions it as a possible treatment).

In the US the insurance belongs to the patient, so it's the patients job to handle them (with help). In the UK it's not so.

Uhhhh, we don't have insurance in the UK. Basically the NHS is your fallback, it will (more or less) treat anything that: "negatively impacts your quality of life". However it may not be the very best care and you may have to wait for it (depending on the contention for services in your area and the treatment you need).

If you want quicker service then you can go private and pay for it.

In terms of experimental treatment I know the NHS may suggest it if they are unable to effectively treat you.

Basically the UK system is the American system (e.g. you can always go private) without the suck (if you're broke you still get fixed, just on a slower timeframe).

Uhhhh, we don't have insurance in the UK.

We do have this thing called NICE tho'. http://news.bbc.co.uk/1/hi/health/1923989.stm

NICE doesn't face the same choices as insurance companies.

NICE picks treatments based on trying to get the best results for the whole population whilst only spending a finite amount of money.

Insurance companies pick treatments based on trying to get the largest amount of profit compatible with people being willing to carry on paying for insurance.

It's much the same from the perspective of the person being denied treatment, having paid NI their whole life.

You can't compare taxes to services, Tobacco tax gets NOWHERE near covering the medical costs that the system has to bear for example.

NI is pretty cheap and the only kinds of treatments that are going to be prevented are those that are incredibly expensive, experimental or incredibly rare. You can still go private though.

Same sort of scenario for pensions, if you don't save for yourself you will still get a state pension. You will have to live on Tesco value bread even though you "paid taxes your entire life".

The defining line is: If you're a UK resident and you're not wealthy and you don't save any money you WILL be catered for: TO A DEGREE. Sure its not always fair but it has to be pragmatic at the edge cases to work at all.

Tobacco tax gets NOWHERE near covering the medical costs that the system has to bear for example.

The UK govt. makes approx GBP 10Bn a year from tobacco, and spends approx. GBP 2Bn on medical costs associated with it.

if you don't save for yourself you will still get a state pension. You will have to live on Tesco value bread even though you "paid taxes your entire life"

The problem I and others have with this is that the person who contributes nothing, by their own free choice, will receive far more than those who have contributed, and saved, and now get nothing due to means testing.

You sure about those figures? Last I knew they were pushing through legislation about tobacco based on the premise that it was costing the UK too much in healthcare. What is your source?

I and others like me have a problem with people like you who do not understand the principle of true charity. No strings attached.

Sure I agree that we need to improve the way we provide some of our benefits, there are probably too many people on incapacity benefit suggesting some (many?) of these are fraudulent cases.

However where we appear to differ is that in principle I have no problem for a single parent or someone else with "problems" being able to claim benefit. I'm happy to have some false positives if we can help positive positives. I'm lucky with my life, other people need a hand. It is not my place to morally assert how they should lead their lives.

I'm also puzzled how you think means testing is unfair. Those who have, have. Those who haven't get given. Do you appreciate what would happen to crime figures if the dole was abolished?

and others like me have a problem with people like you who do not understand the principle of true charity

True charity doesn't involve coercing the donor - and the donor is free to switch their donation to another charity that does a better job!

I'm also puzzled how you think means testing is unfair

Because it punishes those who do the right thing: work hard, pay your taxes, save what you can, get nothing. And yet those (note that I said this in my earlier comment - you seem to have overlooked that rather crucial qualifier) choose not to contribute, get everything handed to them on a silver platter.

It's easy enough to implement this: anyone who leaves their free education without some qualifications needs to work for X years before they are entitled to anything further from the taxpayer.

Those who have, have

Ermm, no, those who work hard, earn. Those who don't, take.

Could a doctor in the UK prescribe an experimental treatment?Could he prescribe it and get insurance to pay for it? I bet not without a fight.

Yes, because insurance doesn't pay for it. You can get experimental treatment on the NHS - I think it is a little more of a hoop to jump through and depends on the actual hospital your at (for example most will insist other forms of medicine have been tried first).

Here doctors are a lot less litigatable as individuals; I think that is the main reason health care is better here. Without frivolous lawsuits and insurance companies breathing down their necks.

I think the insurance companies considered Shooter's treatment experimental, which is why they gave him trouble. But apparently did pay at the end.

You missed the part where he has to keep on fighting to keep the coverage and says that he expects to lose his coverage eventually. And it sounds like you don't have enough experience of being on the wrong end of an insurance companies attempts to kill you to be less credulous about their nature.

The problem is that in the US at this time, health insurance companies are structurally evil. Evil in that they are the source of unnecessary pain, suffering and death. That they cause this suffering in the name of their 'fiduciary responsibility' to their shareholders only compounds the evil.

I don't think you can say the companies themselves are evil. Evil implies a deliberate choice to hurt people instead of helping them. I don't think insurance companies have that choice. They're in the business of collecting modest premiums in return for being on the hook to pay out large amounts of money for the few most sick patients. Of course they're going to drag their feet on paying and try to get the sick ones off the books. If they paid all the claims, they'd be out of business. They don't have a choice, so you can't call them evil.

The unfortunate second-order effect is that it attracts the wrong kinds of people. They need software to find people most likely to cost them money, and jack up their premiums until they switch. Would you want to write that software? Like, the line of code that says,

  if policy.expected_payout > policy.current_premium*0.6:

> They don't have a choice, so you can't call them evil.

See my response below for an elaboration of why I use the term evil in this context. And all of the human beings involved in this system have choices as to how they can react. The fact that some of those choices have costs does not automatically remove the element of choice. The executive who chooses to perpetuate the system in it's current form is making a moral choice and should be held to account for it.

Insurance companies are neither Good nor Evil. That's absurd. They're simply in the unenviable position of having to be the decision makers in the distribution of a scarce resource (health care).

Saying the insurance companies are evil is no more informed than the people who railed at the Obama administration for suggesting that end of life care should be rationed.

The most fundamental issue is that health-care is so damned expensive in the US. That's why we get in the degenerate situation we're in now where it seems like insurance companies are the arbiters of who shall live and who shall die.

I have to disagree with you. I used the term evil in a considered fashion to describe the moral situation in which anyone who is running a health insurance company in the US at this time finds themselves. To anyone who has bothered to investigate the actual functioning of the system at this time the idea of the current form of health insurance as the rational rationing of scarce resources is laughable.

The structure of health insurance protection in the US at this time extracts almost a third of every dollar spent on health care. And those administrative costs do not contribute towards better health care, chronic or acute. And that is why I am not afraid to make a moral judgment; an industry that steals the third part of the money entrusted to it's care at the expense of the sick and dying is evil. How can we remedy this evil?

Wouldn't a public plan have less incentive for revenue since they can be subsidized?

It is the norm.

I pay twice as much for my insurance as I would for identical coverage from the HMO branch of the same insurer, simply to make it harder for them to deny payment. This is totally worth it, but not everyone can afford to do this. I still have to fight them at least two or three times a year over coverage of something.

Just yesterday my insurance company decided that a routine physical and cholesterol blood test was not covered. After calling them up, they assure me that they will cover preventative care but somehow this physical exam is not preventative. Their definition of preventative clearly is not the normal definition and is meant to screw with people. Most likely it is a billing error or some such. So I'll spend the next few weeks calling various people and harassing them.

It wouldn't be so bad if this wasn't the norm. Every time I visit the dentist or doctor, something comes up from insurance. Then I waste a week or a month fighting the insurance company for the most inane things.

Now imagine if you couldn't speak English or didn't have the time to make these calls.

This is what convinces me the system is utterly broken for you guys.

I mean you can understand fuss and screw ups with expensive, complex or unique treatments. But when you have a faff just to go for a dental check up.....

Here I book my appointment, turn up, get 10 minutes or so check up and polish and then pay £16. No fuss or drama.

If you need to go back within the month it is free (on the £16 payment) too. Bargain.

I don't know if you're familiar with Fox, but they're not running any story that suggests healthcare needs government intervention.

This is false. You must not be familiar with the way local Fox affiliates work. Local news != Fox News Channel.

Sorry if this was just a partisan joke and I missed the humor.

I think he was suggesting that they could do a human-interest story about a real-life Dr. House (to take advantage of sweeps), with Shooter as an example of someone whom no one else could diagnose properly. They could completely leave out the bit about the insurance companies if they were so inclined.

The local news is not always as blatantly partisan as the big network news from those guys.

Shooter, how did you find this Dr. House? You neglected to talk about this. And I think this is an important piece of information that can benefit us trying to get a resolution for our own mystery illnesses. How do you go about hunting a good doctor?

I feel some people are focusing on the wrong thing, most likely because of my poor presentation. I'll try to answer your question, but I also want to elaborate a bit:

In relaying my story, I kind of 'cast' the diagnosing physician(1) as the hero, in part because it was such a relief to me for someone to finally listen and think logically, because it was relief to me to finally have an answer...and also because I was trying to shorten the post. But remember, by the time I saw this doctor, I had my condition narrowed down to a couple things already, and one of my guesses was correct. A search engine could have had equal billing, diagnostically. This guy didn't have a halo on his head when I found him or a neon sign saying he was "The One." He was not the first person I was told was an amazing diagnostician or "like House." He was just one in a long line of doctors, albeit one of a small number that was compassionate, open-minded and listened. I never brought up my ideas about what I had until I gave the doctors a chance to give me their ideas, because I didn't want to bias them. This doctor was just the first one that hit on the actual problem, and was willing to order confirmatory testing. It was largely odds. If you see enough doctors, it will probably happen eventually...a million typing monkeys and all that. The real heroes are the doctors who will actually treat you once your diagnosed, even at great risk to their livelihood. The real heroes are the ones that will fight the insurance companies and help you while you're going through treatment.

The final diagnosis wasn't really magical, or the act of an amazingly brilliant doctor. Yes, having the diagnosis was a psychological relief, but the most important could be this: the big, insurmountable problem for most people will not be getting a diagnosis but finding - and paying for - a treatment. There is basically a witch hunt in this country for doctors that diagnose and treat complex diseases. Complex means expensive, and insurance companies don't like that. Getting a proper diagnosis can be an enormous problem, but it is often just the start of the journey.

(1) Um, I'm getting tons of emails asking for my specific diagnosing doctor's name - which I simply can't give out. If you have any of these particular diseases, he will not treat you anyway. Remember, he turned me away. He would not even start a battle with the insurance companies. If you have something unusual or that is complex or that is outside of the insurance company parameters, he would send you elsewhere for treatment anyway.

That all said, here is how I found "the doctor":

1. I was persistent. I saw lots of doctors. The 22 number I mention in my post is mostly just the specialists I saw - not even all the general practitioners I visited.

2. If I were to rank the doctors I saw, the better ones were either members of IFM (functional medicine), they were DOs (shady origins, but a more holistic viewpoint), and/or they were internal med doctors. Rheumatologists only seem capable of seeing certain things. Neurologists only seem to see certain things. In general, specialists were unable to see or care beyond their specialty. Which, I guess, is somewhat understandable. [The specialists did find clues, however, like the lesions and the hormone issues that eventually helped me find the underlying cause.]

3. I asked around for someone who had a good reputation as a diagnostician. I asked doctors, business leaders, and hospital administrators. Unfortunately, many doctors seem to pride themselves on their amazing diagnostics skills, whether they actually possess them or not. So, I also asked for "open-minded" and "compassionate." Compassion implies a good listener, which is probably the most important thing because you can't find a pattern if you didn't hear about it. Some of the worst doctors I visited were the famous ones. They were too busy to listen. IIRC, I think the final diagnosing doctor had been trained at a podunk med school in Cuba or something.

4. I was an informed patient. I used to work in the medical field (piss-collector, clinical drone, researcher, and software developer.) I researched extensively on my own. (This can backfire for some people, because they develop cyber-hyperchondria.) In any case, I knew - or learned enough - to get a lay of the medical landscape and I used that to my advantage.

5. I kept a 'journal' that listed what symptoms I had on what day, etc. - it helped me find patterns. Some organisms have a specific lifecycle, so that helped me in my own search. Sometimes the only pattern was that there was no pattern, but the journal exercise was still very helpful. Just be careful about looking like a nutjob if you carry a handwritten book of your woes into a doctor's office.

6. I was an inpatient patient. I know doctors are just average schmucks like the rest of us and they make mistakes, because I've worked with them. So, if a doctor didn't listen or was a jerk, I never went back. Some people think doctors are holy or something, and they continue going to visit a jackass in the hopes that something will change. That can kill you. That tendency is especially prevalent in older people.

7. I acted professionally when dealing with doctors. Enough of them thought that I was nuts that I didn't need to confirm their suspicions by acting too emotional or unreasonable. Even though I was often emotional, I kept it under wraps.

8. I tried to find doctors that kept up on the latest research, or that at least seemed to care about new research and treatments. To be honest, I knew more about the most current medical studies than any doctor I visited, including the final diagnosing physician. I was more motivated and I had more time on my hands. But I used my knowledge to separate out the doctors who read the bare minimum for their CEs from the ones that were genuinely interested in their field and read broadly for their own benefit.

9. To restate an above point: I never brought up my ideas about what I had until I gave the doctors a chance to give me their ideas, because I didn't want to bias them. I had to remain open-minded too. You may not like the answer you get, but if there is compelling proof about it you have to accept it.

10. Read and know your insurance policy if you're in the US, and fight for your rights.

Also, are you in touch with Dr. House- for unofficial updates and getting 'tips' from him?

Shooter was kind enough to tell us the doctor was IFM-affiliated, so that could be a start. (See http://news.ycombinator.com/item?id=868600)

Not all practitioners of functional medicine are the same, though. I would suggest also seeking a more specific recommendation for your condition.

This is an amazing story. I'm glad you're onto the road to recovery.

For hacker news -- this is actually a perfectly reasonable amount of information to provide.

Having worked in many facets of systems engineering (in addition to an eye-opening stint in tech support) I can see many analogies between the medical diagnosis you had to obtain and computer diagnostics.

Just like medicine, a lot of computer problems aren't even diagnosed. A computer reboot is the way of fixing some problems without bothering to diagnose them, like antibiotics.

Generally, a hard computer bug getting fixed happens best if -- a LOT of people encounter it OR someone takes a personal interest in the problem OR there is meticulous documentation that makes it easy to pinpoint what is happening.

People don't notice that this is the same in the medical profession. You helped yourself by carefully documenting what happened, and I believe that's what helped you in the end.

All the best to you (and congratulations on fatherhood!)

Dude, that well and truly sucks.

I work around hospitals some and every once in a while I get the odd feeling after watching a specialist scratch his head over a fuzzy black and white "slice" made by in imager with a magnet the size of a garbage truck that its all still so primitive.

Medicine has a long way yet to go.

At the same time, medicine has come a long way, even over the past century.

My academic background is in history, with a focus on the history of science and medicine, and it's an excellent foundation for optimism.

Yeah MRI machine are definitively cavemen technology (http://en.wikipedia.org/wiki/Magnetic_resonance_imaging#Phys...) you should help

Well, yeah, I know, magnetic resonance is a mighty cool hack. I was just hoping that it could be maybe, you know, a bit smaller. Not costing as much as a first class ticket from NY to Tokyo for a trip through one might be a nice touch as well.

Hell, lets just go all sci-fi and get right to the part where there's an iphone app for waving over a person and seeing their insides in full color in real time...

Isn't it much cheaper in countries like in Japan? I heard it was under $100 to get scanned.

It is certainly much cheaper here in Australia, the cost is several hundred dollars. There are MRI machines available in just about every major suburb.

In Japan MRI is covered by public insurance. You only need to pay around $60-$80.

For a low quality scan (resolution about 1/3 what you get in the US). A 2 tesla scan (what you get in the US) will cost the same as in the US (though the government may subsidize it).

I've heard it suggested that Japan got "scan-happy" (patients want a scan, kind of like how US patients want antibiotics for their virus), so they built cheapo MRIs to give them what they want.

Thanks for the info. I didn't know.

I don't think you should have been voted down for that. As a physics minor, I have to say that MRIs are some of the coolest things I've ever come across. The leap to their invention was brilliant.

You present well.

I've thought it would be difficult to become a good doctor because the turnaround time between tests is long, you don't know if patients are lying to you, and if you're not working properly then your patients won't come back so you lose your feedback loop. This clashes with the hacker experience where the turnaround time for problem solving is often very rapid, and the problem sticks to your desk until you've solved it. Unlike with hacking, you have no opportunity to improve the system to make it easier to diagnose future problems with.

I love the show 'House' because I identify with all the ways he works - leonine work habits, putting career interest ahead of body, largely unsuccessful attempts to modify energy levels with caffeine and alcohol, deliberately breaking things to see what happens, lupus ("It could be a threading bug!"), difficulty relating to normal people who don't orient around career obsession. I've fallen in love with supporting clients through API integration because it has a whole social dynamic that adds to the complexity. As with patients - when the other side tell you they've done something how can you be sure? "Everybody lies" / "Trust but verify".

This might be way out there but have you investigated what the cost of going to another country and getting treatment there would be?

You already have a correct diagnosis. You sort of know what needs to be done and only need docs qualified but unafraid to do it and cheaper meds. You might be surprised how comparatively cheap all that can be outside US and the local laws in other countries might mean that the docs there don't have to worry about treating you there like they have to in the US. (Anecdote: A friend of mine once calculated that despite what the insurance covered for him, if he had come to Bombay and gotten treatment at the best facilities staying in a 3 star hotel all the while, it would have cost him less and he would have received way better treatment from more qualified docs.)

Good luck to you. Hope you get well soon.

Firstly, thanks for sharing, and what a shit thing to have to go through (and continue to go through!)

I didn't really understand half of what you wrote because I don't have a medical background and I don't think watching House now and again qualifies me to have an opinion. With that said, I did want to comment on your last paragraph regarding having your first child... My partner was born with mild cerebral palsy, has major balance issues and little to no temperature sense. I'm 35w2d pregnant with our first and he's already had comments (right down to "I didn't know people like you could have kids") on his ability to raise children. My point being - you're not alone. There will always be doubters. Please don't let those people, however nice their intentions, get in the way of what should be an amazing experience for you and your wife.

On that note, congratulations & good luck :)

Thanks for that. We're nervous about the baby, but I've improved enough I think I'll be fine if I'm very careful. And I've asked the biggest 'doubter' to buy us a helmet for the baby ;-) Congratulations to you and your husband.

I really appreciate you sharing this. Reading a story like this doesn't have a direct applicable impact on my life at this moment, but I feel I am better for having read it.

Shooter, I wish you the best of luck for your continual recovery.

I've been ill (dizzyness, almost passing out, weak left arm, chest pains, burning throat, swollen glands, twitching muscles, burning/pinching at joints) since June and I just fell out with my NHS (UK) doctor this week and went private.

The NHS doctor has been telling me its a virus and it'll go away on its own, and the muscle twitching was normal for a few days. I finally went back last week (have been back 3-4 times before that) when he was promising me a blood test to check for an infection and he is refusing me, he says we only have 10 minutes and I have too many symptoms, and even that he never said it was a virus infection.

So the few symptoms that he will look at are sending us down completely the wrong path, I don't want to keep chasing symptoms when we should be going after the cause.

I called the NHS directly and they told me to demand a blood test, but the doctor still declines. He even went as far as to tell me I don't have the symptoms I was telling him I had.

So on Wednesday this week I called a private doctor, got an appointment two hours later, she looked at my entire list of symptoms (15~) and checked me over, confirmed I have an extremely high temperature, inflamed throat and swollen glands. Had my blood tests today and I'm going in for the results tomorrow. That's more action in 3 days than my NHS doctor managed in over 3 months. I just hope it'll all be over now, as I've been trying to launch a business throughout this.

Before contacting the private doctor I felt like id slipped through the net and it was useless. I've not even been checking HN much lately so it was pure randomness that I stumbled upon this thread.

I still have a referral for neurological tests and a brain scan with the NHS if required. But I have been adamant that its not a family running disease because both my Mother and Sister have the same symptoms, all occurring since roughly the same date. If it wasn't for that id possibly still be following a (hopefully) less likely route.

A drop in the water compared to what you've been through, but I think I can relate at least a little to some of the initial frustrations that you've had to deal with. Thanks for sharing your story and I'm glad that you eventually pulled through all the confusion and are getting the treatment you need.

This is terrible. Is there any question left as to whether private healthcare is a disaster? I have known a few people who have been denied healthcare coverage when it is quite clear that it is due. Either there needs to be a regulatory board that can overrule insurance companies or we need to implement public healthcare.

Public healthcare is not inherently better than private, it has its own problems. I think it is easier and cheaper (both technically and politically) to fix private healthcare incentives than to go the public way.

I'm not in US, so I may not have the full picture. Am I wrong in some evident way?

How might you resolve the conflict of interest that private insurance companies are better off if they refuse your treatment and you die than if they pay for it?

The problem is not in the conflict of interest - other types of insurance work mostly OK. The problem is that the health insurance companies can somehow get away from their obligations without being sued to death. Maybe that's because of vague contracts, or maybe something else. I don't know the exact reason.

Thanks for sharing.

Public health care is sorely needed in the US IMHO. Whilst it doesn't magically mean everyone gets expensive treatments, at least it takes away some of the problems. The last thing you want to do when sick is have to deal with money/insurance.

Really hope things get better for you, and enjoy the new baby!

Thanks for sharing this story. I'm always amazed how much faith Americans have in their medical system, which seems more-or-less completely unjustified if you actually look at the statistics. There are multiple problems, too many to list really, but I think the root of it all is that the medical school system is designed to choose candidates with zero intrinsic motivation to learn. That's why the vast majority of doctors can't name a single finding in their field in the last year, and it's why the average chronic disease takes 8 years to diagnose. 99% of doctors don't learn or think about anything they aren't made to by the government. It's pathetic. And sure, the fact that our government as a whole is super corrupt makes it worse, but really the best place to start would be throwing out and replacing the entire school system-- which is responsible for both destroying intrinsic motivation, and also selecting those who have none to run the medical system (and everything else).

Best wishes for a complete recovery. A comment: even good physicians often don't have a good handle on nutritional approaches to wellness, things like vitamin D/sunshine and vitamin C and the immune system, for example, and avoiding anti-nutrients. If this is the case with your health professionals, it might be an area worth researching.

Thanks. I did have a severe Vitamin D (hormone) deficiency and a B12 deficiency, etc. Both are apparently very common with many diseases...more often as a result rather than a cause (immune modulation, etc.) The Vitamin D supplementation actually helped with the pain very slightly early on.

Thanks for sharing your story Shooter. It's clear from your story that your own research had a major influence on your eventual diagnosis, someone less educated or intelligent would have merely gone along with whatever their doctors were telling them, so for that I congratulate you!

It's gratifying to hear that you've already had such an improvement of your condition.

You have my best wishes! I hope that the rest of your recovery goes smoothly and that the insurance companies don't give you too much trouble!

Thank you for sharing your story. I hope this serves as a wake-up call to anyone who doesn't believe that someone can be misdiagnosed many times by medical professionals.

Perhaps this is related to what marze said, but based on your experience it sounds like you looked into some CAM approaches (especially from the documentary you mentioned). If you don't mind sharing this with us, I am curious to know if the doctor who came up with the correct diagnosis would fall under this category? Also, your experience with all the different doctors with their own specialties reminded me of functional medicine, an alternative approach. (For anyone who is not aware, "Functional medicine reflects a systems biology approach because it includes an analysis of how all components of the human biological system interact functionally with the environment over time. The Institute for Functional Medicine contrasts this approach with an organ system biology broken down into modern medical specialties.")

Best of luck to you, and I'm glad you now at least know what the problem is. Not knowing why this was all happening must have made it even worse.


I had to Google "CAM" because I wasn't familiar with the acronym off the top of my head. The diagnosing physician was definitely a member of IFM...I distinctly remember a certificate on his wall from them for something. In retrospect, the IFM-affiliated doctors and the DOs were all more compassionate and slightly more helpful than most of the 'traditional' MDs. I guess because they emphasize the more holistic approach/perspective, which is what was needed. The diagnosing doctor was not a New Age-y, 'alternative' type doctor, though, in the way people normally categorize them. Too much touchy-feely, pseudo-scientific stuff makes me nervous.

The documentary I mention mainly contrasts those who believe in chronic Lyme and long-term antibiotic treatment with those that do not. There is one doctor, mentioned fairly briefly, that is what I would call normally call an 'alternative' doctor as it has come to be described in the common vernacular. Long-term antibiotics, while controversial, are not really an 'alternative' treatment as I commonly think of it...? It's a controversial application of a traditional treatment. (Even though, frustratingly, they are happily used for longer periods for things like acne without the outrage.) Maybe I'm reading too much into the word 'alternative' - it's become a fairly loaded term. In any case, I do like a more comprehensive approach and am glad I found it. Otherwise, I'm sure I would still be very ill.

Yes, not knowing what I had was definitely one of the worst parts of the whole thing.

I agree, "alternative" does seem to have a negative connotation at this time, maybe because so many things now fall under that term. Thanks for letting us know the doctor was IFM-affiliated; it's good to know that option is available.

I've been helping a friend research her medical issues. They're not as severe as yours, but she's had similar problems with doctors acting as little more than expert systems with partial data sets and unreliable memories. I was the first person to suggest an effective long-term treatment for her problem[0] after a number of doctors failed to come up with anything aside from the well-known treatments, all of which failed, some making the problem worse.

I'm not sure if there's an easy systemic solution to this problem. Somehow, doctors need to get in to the habit of thinking and looking at the whole picture. There's also a tendency for doctors to not listen to patients, which is exacerbated by a tendency for patients to lie.

[0] The major symptom is menorrhagia, and the successful treatment was nafarelin, a GNRH agonist. This appears as a standard treatment on websites updated this year, but I could find no information about its use for that purpose in 2007.

I have a friend who has the exact same condition, he went everywhere but was diagnosed with Lymes disease from a local doctor, the heavy metals put her onto Lymes and it has changed his life. His story is very similar in length so TMI as well but tom_obrien10001@yahoo.com is his email.

My roommate also had similar conditions. He was at the hospital every week. Always fatigued, extreme migraine, gaining weight, muscle pain and tons of other symptoms. He was super healthy and just started deteriorating. Unfortunately and sad ending, He passed away because he overdosed on pain meds about a year ago.

I wish you the best of recovery in the near future. Thank you for sharing this story.

You are extremely brave. Not a lot of us would go through crap seeing so many doctors and hospitals without going nuts. I hope you recover completely soon. Thank you for sharing - somedays I think my life is tough, but these are reminders that I'm way off the mark.

Thank you for your kindness, but I'm not brave. Guys like Hal Finney - in the original HN post that I'm ashamed to have drawn attention away from - are brave. I was just persistent...and then very lucky.

Thank you, David, for this. It's a heart-breaking story but it's consoling that you're now on the road to at least a partial recovery. It makes me respect the fragility of it all: that it was potentially all due to a single tick. It's mind-boggling.

I know someone who was incorrectly diagnosed as having MS but it turned out (apparently) to be Lyme disease. A couple factoids:

* Lyme tests can often give (even repeated) false negatives. The bacterium can lie dormant or hide. This is why it's a good idea to get a lyme test as a baseline if you're going to be doing a lot of outdoors stuff.

* Most doctors are not educated about Lyme disease, so if you think you might have it, it is important to find a specialist or a doctor who is "Lyme-literate".

Also, how is this not on the front page with 300 points in 17 hours? Flagged too much?

Have you consider about Ayurvedic treatment [http://en.wikipedia.org/wiki/Ayurveda]? It's based on the philosophy of Balancing the senses.

Compared to western medicine, where focus is on attacking the infection and thereby causing other ailments, Ayurveda treatment will help to keep the balance of the system, which would be more comfortable.

Just give a thought on it. In this part of the world, there are lot of cases that were miraculously cured through Ayurvedic treatment.

Hope you will get better soon!

why the downvotes? I don't understand. laktek is making a suggestion.

As someone who has gone thru the whole onslaught of visiting several doctors for my sciatica plus degenerating lumbar discs - I was told by many doctors in the US that I am at the risk of being paralyzed . To put it mildly, I was scared. I then went for 2 months to India(kerala) where they diagnosed my problem as something that was the result of digestive problems. I had no faith in the daily treatment; I questioned the rationale of what they were doing(eg- enema with herbs and medical oil) to morning-medical-castor-oil treatments. But after 2 weeks, I was not limping.After 3 months, I was walking normal as anyone. At the end, I was told by the ayurvedic doctors that any more chemicals(by that they meant allopathic medicine) and my body would have made slower progress.

I also went thru the insurance drama- doctor 'adviced' me to take an x-ray so not to get into insurance troubles. So a whole 2 weeks later - I get my mri to know which of my discs have problem. There was this pain specialist who was so eager to take me 'once more' to the operation theatre to chip out a part around the disc(which he did twice). The nerve specialist was another story - interested in my occupation and annual salary over my pain.

I just heard about a new research study which indicates that some cases of Chronic Fatigue Syndrome are probably caused by a retrovirus infection. If you haven't already done this you might want to get tested for XMRV. It seems possible that could be somewhere in your mix of multiple infections.


I recently saw a demo of a case-based reasoning system (some simple AI) that diagnosed illness based on symptoms. I have a feeling it would not have had any idea what to diagnose you with. I'm glad you found the doctor who was able to get you on a path to better health.

Is there any software or standard methods for helping to keep track of symptoms, tests and hypothesis and identify causes of problems, when there are too many symptoms and too long a time period to hold it all in working memory?

If the financial aspects become too much, I would highly recommend doing some "medial tourism" to panama, costa rica, thailand or somewhere similar to get the treatment you need at a significantly lower price.

> My wife is pregnant with out first child, and everyone is scared/nervous how I will handle it.

I hate to ask this, but as an infectious disease that could be spread by a tick bite, isn't it potentially communicable?

That's actually a really good question, although the answer is controversial.

There is great debate about whether any/all of these diseases are communicable, especially Lyme (because of its prevalence.) Anecdotally, there are many doctors who argue that they are based on their own patients, and there have been a few medical studies that have also shown that they are, but the status quo maintains that they are not. Even though syphilis (which is caused by a very similar, but less insidious, spirochete like the one that causes Lyme) is obviously sexually transmitted, the insurers and their cronies say it's impossible. There is a woman in the documentary I mention that battles with that issue (and miscarriages) and you can also find information online. In my case, my wife had no symptoms, we had her tested for some of the scariest bugs, and we took some other precautions.

Sounds like a terrible ordeal. Thanks for sharing and good luck with the treatment, getting better and the baby!

I am really curious to find out who "Dr. House without the attitude" is. Mind sharing?

Thanks. Sorry, but all of the doctors - both good and bad - must remain nameless. Some specifically requested privacy for obvious reasons (targeting by insurance companies, etc.) The final diagnosing physician isn't nationally prominent, to the best of my knowledge. He was just recommended to me based on a regional reputation (my wife and I have both worked in healthcare. She still does.)

If someone thinks they may have some of these infections, I would be happy to refer them privately to doctors I'm familiar with that treat them...or to organizations that can provide assistance. Otherwise, I don't want to bring any doctors unwanted attention.

That's an interesting story. Sorry about all your troubles, but you seem to be handling yourself well and you have a family so it is not all that bad.

It's a shame about the insurance companies.

Thanks for the post. Hope you get better soon!

Were you able to keep working?

No. I had to stop working for some time, including resigning from all advisory and board roles. I was basically an invalid for a couple of years, and operated in a very diminished capacity for several years beyond that. Fortunately, I had a few successes with startups previously and still had enough equity/income without working to survive. My wife also has a good job. I was very lucky.

Did any doctor ever say it might have been lupus?

Yes. Several. (And I, of course, shouted, "It's not lupus. It's never lupus!") Seriously though, lupus and rheumatoid arthritis were some of the early diagnoses. Autoimmune stuff often fits the bill in these complex, mult-symptom cases. That's why it (and a few other diseases) make an appearance on almost every episode of House as a possible diagnosis.

Holy crap. All I can say is: I'm sorry. You have my sympathy.

I too have had problems with lazy, blinkered, doctors and "recurring" multi-faceted infections, but my experience is a cakewalk compared to yours.

I wish you the best, and applaud your strength (and your wife's), and thank you for sharing your story.

Oh, and one potential tip... have you checked out the public plan in states like Maryland? AFAIK, Maryland is one of the few states with good public plans. They aren't cheap (the best one costs almost $300/mo for an individual), but from my experience, they cover EVERYTHING. A broke friend of mine got on the plan for 2 mos to get his hernia fixed (he was 25! nobody would cover him, even if he had the money), and they fixed it. No pre-existing condition BS.

The only thing you have to have to qualify is being denied coverage in the past 6 mos. You may qualify, based on what your insurance co. is doing to you. Certainly if you applied for other coverage, they would deny you.

I hope you are able to continue recovering and that you don't have to deal with too much more bureacratic bullshit.

Possible to get a compressed/TLDR version?

Shooter was probably bitten by a tick that carried a ton of diseases. Most doctors didn't believe that any one person could have so many symptoms, and treated Shooter's individual symptoms instead of trying too hard to figure out what was wrong with him. Finally one doctor figured it out. Shooter is slowly getting better.

Thanks. Now who is Shooter?

edit: Before I get downvoted because of emotional responses I want to clarify that I really have no idea who Shooter is and neither do I know about the relevance for this site.

Emotional response?

Is it really that hard to read the second line on the page?

Specifically the name of the person submitting the story?

Or maybe search for the word Shooter on this page?

I also did not know who it was, but it wasn't that hard to find out.

Of course I did click on the username to see the profile. I did not see a "check out my startup" in his submission nor anything else distinct. So is it http://www.amazon.com/D.-C.-Phillips/e/B001HCUZK0 (searched the web for his email alias) or what?

I've never written a book under my own name. I've started several successful companies in boring industries and I now mostly manage a private equity fund. Again, I'm nobody.

The question is (and why you got downvoted) does it matter?

It's just a guy sharing his story because he was asked about it on another thread. Does knowing who he is change much? (i.e. if he's some super famous guy does he get more sympathy ;))

Wait, are you asking who Shooter is in a global context? Or just who is he with regard to the title of this submission?

Because if it's the first, that was not obvious at all.

If it's the first I also don't know, but did not attempt to find out (does it matter?)

Yes, the first! What a misunderstanding. :-)

I'm nobody, dude. I put my username in the title because I was asked a question in another thread and couldn't think of a good title for my long answer. Sorry for the confusion.

Your not a nobody for certain. I'd say you were an Everyman. :)


Nobodies dont speak up about their experiences.

Thanks for the reply. Now I will read it. I assume it was a "that popular dude had this and that" post.

I tend to think some of the interesting bits are in the details, but - tptacek's very kind comment aside - I will try to summarize it all for you...

A tragi-comedy in three acts. Starring 'Shooter', a nobody:

Act I. Extreme Pain (many symptoms, unexplained.)

Act II. Going Insane (frustrating quest for answers, all in vain?)

Act III. Bugs in Brain (correct diagnosis. treatment. dragon slain?)


Maybe the first justified use of all capitals I've seen on this site.

Guy had a lot of symptoms, no doctors really knew what he had. Eventually he found a doctor who said "You have a lot of diseases, but they are treatable." Guy now is improving, but still has serious, permanent health problems due to his awful ordeal.

TL;DR: Read the poor guy's story and show some sympathy! :)

I think TL;DR could well be a good epitaph for democracy in the United States!

Congratulations on the baby, If you're afraid of passing out while holding the baby - you can do it in a safe place like sitting in a sofa.

On another issue - research on 811 raw vegan or juice feasting. Nutrition can have a great impact on your body and you can support your immune system by feeding your body nutritious meals instead of burdening it with hard to digest cooked food.

Check out bee pollen and raw honey. From personal experience I can tell you that 10 days of 2 to 3 liters of apple and carrot juice a day really improved my energy levels.

I think this note deserves a posterous page - whether you add more stories or not. Just for it's online presence prominence.

imho, you putting your story on the web will help many who are at the initial misdiagnosed stage.

if you don't, I am going to do it (and put your email in the contact). I don't know if I am threatening you or pleading wit you. But please create a posterous - copy the content and email to post@posterous.com.

Edit: of course - i won't do it. it was just a push for Shooter to do it. I would email him if at all I decide.

This post is both personal and medical in nature...

Posting this story elsewhere is something only Shooter should do.

Also, HN seems to have excellent PageRank.

You should definitely try fasting (no food, water only). After a couple of days there should be visible results (You will feel Yourself different).

Another possible advice is to limit carbohydrates (partually replacing them with fats). There is a whole host of possible problems from excess carbohydrates (starting from diabetes, high blood pressure and overweight).

Your health is in Your hands, the doctors can only help if You are fighting disease Youself.

I agree, you've been very proactive and persistent in finding the root cause, why not go ahead and experiment. Of course you should read more about the subject before starting human trials but you have an enormous advantage over the establishment, you are allowed to conduct experiments in humans! At least on one human - you. Fasting for a few days and drinking only water is a great way to let the body heal itself and the worst is that nothing will happen.

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