I had a friend go through something very similar a few years ago - almost exact same symptoms, steady relentless degeneration, multiple ineffectual doctors and most of the incorrect diagnoses you list above.
Finally one doctor figured it out - Pernicious Anemia. It prevents stomach from absorbing much needed Vitamin B12, which was the cause of most of the degenerative, incapacitating symptoms.
She started taking daily B12 shots to compensate, since there was no other way to get B12 into one's body. That completely solved the problem, cured the symptoms, within a few weeks she was back to her normal 110% self.
The doctor that finally figured it out noticed neuropathy in her extremeties - muted or complete lack of feeling in her hands and feet, and that clued her into the possibility of PA.
I was kind of skeptical about the whole "let HN play Dr. House", but I have to admit the symptoms on the wikipedia page seem to match the OP's symptoms very well.
Even if he/she doesn't have Pernicious Anemia, it's a really good suggestion.
It's probably not the best idea to have a bunch of non-doctors randomly scanning Wikipedia's medical pages trying to backfit lists of symptoms they have no personal experience with to the OP's described condition.
But it is probably worth exploiting the odds that someone out on the Internet has experienced the exact same difficult-to-diagnose medical problem, eventually figured it out, and lived to help others do the same.
If your doctor won't give you a B12 shot tell him to shove it up his ass, and get a new doctor. It's not like you're asking him to write you a 'script for 300 oxycotin tabs.
The control-freakish nature of many medical professionals astounds me.
Anyway, you can also try large dosage (5000 mcg) sub-lingual B12. Some of it will make it into your bloodstream without going through your stomach.
Second this, about a thousand times. I don't care where you live, there is somebody in town who will give you a B12 shot. Drop your current doctor, and be sure to write him a letter telling him why. You might save somebody else.
PS - Keep in mind that B12 can have some side effects:
Hematologic: Peripheral vascular thrombosis has been reported. Treatment of vitamin B12 deficiency can unmask polycythemia vera, which is characterized by an increase in blood volume and the number of red blood cells. The correction of megaloblastic anemia with vitamin B12 can result in fatal hypokalemia and gout in susceptible individuals, and it can obscure folate deficiency in megaloblastic anemia. Caution is warranted.
Leber's disease: Vitamin B12 in the form of cyanocobalamin is contraindicated in early Leber's disease, which is hereditary optic nerve atrophy. Cyanocobalamin can cause severe and swift optic atrophy, but other forms of vitamin B12 are available.[citation needed] However, the sources of this statement are not clear, while an opposing view[45] concludes: "The clinical picture of optic neuropathy associated with vitamin B12 deficiency shows similarity to that of Leber's disease optic neuropathy. Both involve the nerve fibres of the papillomacular bundle. The present case reports suggest that optic neuropathy in patients carrying a primary LHON mtDNA mutation may be precipitated by vitamin B12 deficiency. Therefore, known carriers should take care to have an adequate dietary intake of vitamin B12 and malabsorption syndromes like those occurring in familial pernicious anaemia or after gastric surgery should be excluded."
Those are rare but worth being aware of. My friend has been taking bi-weekly B12 injections for over 2 years now with no problems, and it continues to completely suppress the PA symptoms.
If your doctor won't prescribe them, find a new doctor. You need a doctor who is going to work with you in this situation.
I've been in a similar situation myself. Having a doctor I could sit down with and say "OK, here's my latest research, can we try this?" was critical to both my physical and mental wellbeing.
Unfortunately (or fortunately, depending on your viewpoint), it became my job to find out what was wrong with me and his job to make sure I didn't hurt myself in that process. I have a very different view of the medical industry as a result.
This is exactly what I've been doing for 18 years. Hiring and firing new doctors, and trying to navigate "what should I investigate next?" on my own. To be fair, there were several doctors who were willing to try (just about) anything I brought to the table, and when they were all out of ideas, they admitted as much. Unfortunately this type of doctor is rare, in my experience. Which is why I'm asking for help finding a good one in my area (Cleveland).
FYI, I dug up an email from my close relative who had this.
Her levels at the time she had the condition were: B12 at 328 pg/ml and folic acid was 15.1. She said that that was considered on the low end of normal (which is why it went undetected for so long). After the shots, the B12 levels have been in the 600 range. Like most anything biological, B12 levels can affect everyone differently.
While your waiting for a B12 shot, you might try taking some sublingually with sorbitol. The latter allows most (but not all) people who have absorption problems to get enough.
I second this. I had a close relative suffer from this. The doctors didn't catch it for years, but once they diagnosed it, and she started taking the B12 shots, it made a huge difference.
Yes, as soon as I read over your symptoms, my gut told me that you don't have enough B12 in your system, probably combined with chronic fatigue.
I had (past tense) very similar symptoms, minus the heat sensitivity. Regular doctor was useless. Went to an environmental doctor, Dr, Krop in Mississauga, Ontario and he didn't let me out of the office until he gave me a massive B12 shot.
Amazing that 10 years later, doctors still miss this.
Yes but someone probably needs to request it specifically. My first thought was that he should try B-12 shots as well, they are cheap, their effects are nearly instantaneous, and you can take shitloads of it without any problems. Unfortunately they are prescription only in the US, you can get them OTC in Mexico.
"and the other main diagnostic signpost of low levels of serum B12 cannot be relied upon, as sufferers can have high levels of serum B12 and still have pernicious anemia."
It's really hard to diagnose, there are no reliable tests for it.
It should. I've known a few people that inhaled Nitrous recreationally (which is known for depleting B12 very rapidly); it was a common side effect (other than it being an anxiolytic) that you would lose sensation in your outer extremities. People that do too much can do serious damage to the body, similar to the symptoms listed by the OP and the root commenter.
I was going to suggest Anemia of some sort, generally my wife was a bit Anemic at some point and iron pills helped greately. It was like night and day. She'd wake up exhausted and spend the day exhausted and then go sleep early and repeat next day. She would have mabye 2x more sleep than me and was more tired all the time.
However a regular blood test would rule Anemia out and after 20 years I would be surprised if Anemia itself was the problem. I am guessing Pernicious Anemia could be it, check for other kinds?
When I read your list of symptoms before reading on to the list of stuff you've been tested for my first reaction was Lyme disease, my ex-wifes brother has it (he's a forester in Poland and got it through tick bites which are something of an occupational hazard).
And you list in your later writing that you test positive for it, now, one thing about Lyme disease is that if it is untreated it is steadily progressing, he's under a pretty strict regime which basically puts him in hospital periodically for blood treatments.
Please re-consider this option because it rings all too familiar.
Have you had any (infected) tick bites when you were in your 20's (probably hard to remember from that long ago...) ?
"Up to one third of Lyme disease patients who have completed a course of antibiotic treatment continue to have symptoms such as severe fatigue, sleep disturbance, and cognitive difficulties, with these symptoms being severe in about 2% of cases."
With Lyme, if you take antibiotics (presumably Augmentin or something that will target the bacteria) you will get a Herxheimer reaction that will basically put you through a severe series of reactions such as joint pain, migraines, and other flu-like symptoms.
Provided the OP was on antibiotics that targeted Lymes, I'm skeptical he has it because the effects would have been profound. (Ie, he would have been in major suffering soon after starting the antibiotics.)
That said, there are a few relevant questions in regards to this:
1) What antibiotic was the OP put on in response to the Lymes diagnosis? If it was not a one that the disease is sensitive to, then he may have it and it simply was not being affected by treatment.
2) If he was taking a Lyme-sensitive antibiotic, what were the effects? Did he feel worse when taking it? If so, this might be an indicator he in fact has Lymes, since it can take months or years of suffering through treatment to cleanse the body of the bacteria, which will fight back throughout.
3) Was the OP diagnosed through a Western Blot test? A Western Blot test is the best way to be sure of the presence of Lyme. Other tests are less effective and have higher false positive/negative rates.
I'm not a doctor, but have friends and family with advanced cases of Lymes who have gone through years of suffering due to not catching it early. I hope for the OP's sake he doesn't have it, because treating it will be a long and painful process due to the long time it's had to embed itself into his nervous system.
Probably there is more information to be found elsewhere about this. The OP should definitely seek out a specialist on this and not rely on a general doctor, this is a very insidious disease and letting it go untreated (if this really is it) will have dire consequences.
On another note I'm surprised at the authority with which some pretty bad advice is given in this thread.
Second everything you wrote above, it matches the experience in my family exactly.
Hey Grandalf, while I'm sympathetic to your life-style I think when someone lists a bunch of very serious symptoms that apparently have an underlying clinical cause giving them 'life style advice' that includes traveling to another country and a bunch of mumbo jumbo (plan nice projects/surprises and think about them ?) and to do so for an extended period of time may cause his disease to advance unchecked for another 3 months, which could have some very serious side-effects.
Some of the diseases on the 'more likely' list given the OPs symptoms are progressive and the various stages range from 'mildly unpleasant' to 'fatal'. You probably are not going to treat any of them using fresh fruit and yoga, and to advise someone that says he has 'extreme heat sensitivity' to spend time in Costa Rica makes me think this is advice you did not tailor to the OP so I'm modding you down.
I dislike doing that without giving a reason, I hope you can find yourself in my reasoning why.
- He's already been to doctors, and if he's asking HN he has probably tried all reasonably probable medical treatments and spoken to at least a few doctors about his concerns/symptom.
- The nutrition regimen I suggested is quite similar to one that is used by some doctors to treat a variety of diseases. Don't underestimate the health impact of the lifestyle stuff I suggested.
- The projects/surprises angle is my version of mild psychotherapy, and if combined with some vigorous physical exercise and good nutrition will put his emotional system in tip top shape. At best, this will help his body heal itself, at worst having the conditions he describes would be very depressing and it would help with that. Planning nice things for others is a surefire way to cheer one's self up.
Generally when you go to a doctor and are otherwise young and healthy and you present with bizarre symptoms they take it VERY seriously. So unless there has been some very poor medical decision making going on he's probably failed all the diagnostic tests for the most severe possible culprits known to his doctors.
And, if I had three months to live I could think of worse ways to spend it then with a few good books enjoying surf and sun, and rewarding my physical body with the sort of pampering few of us ever take the time to undertake. Also, it's generally not all that hot right near the ocean.
Finally, I thing it's important to realize that medical science is just not very good and most medical treatments are scarcely better than placebos. Also, medicine is often very narrowly focused and very rarely advocates nutrition or exercise because typically the 70 year old with a heart problem isn't considered able to make significant lifestyle changes.
You are assuming much based on little information and the risks to the OP if he would follow your advice to the letter are grave, I really don't understand why you are so steadfast in this.
He's already tested positive for at least one disease that is both chronic, severe, progressive and downright (+) dangerous, he's had one anti-biotic treatment for it which did not have the desired result but that does not mean that that option is off the table, merely that he may have a resistant strain of it.
More clinical tests are needed, some of them urgently so.
I'm not a doctor but I know bad advice when I see it and I really wonder whether you are considering the consequences of your actions here.
Please, there is a time and a place to advise people to change their lifestyle, if any of the top contenders of what the OP ails is 'it' then by following your advice you could cause some pretty serious damage. A change of scene will make anybody feel better, for a while. But given his heat sensitivity Costa Rica is about as bad as it gets (I spent three months in Panama last year, the climate is pretty comparable on the coast), that's the last place the OP would be comfortable, unless he parked himself on a local mountain top.
Besides that, he should be finding out what ails him and sooner is better.
Ruling out which diseases are not 'it' is just as important as finding out what it is at this stage and none of that is going to happen lying on the beach. That's just playing ostrich and is eventually going to make the problems worse, not better.
"Follow these instructions to the letter" indeed.
edit:
+ expletive deleted, apologies to those of a sensitive nature that saw it before.
I actually gave this guy different advice a few years ago on Slashdot. At the time, I told him to go to the most prestigious academic medical center in his area and not to trust the average primary care doctors.
So I assume he's done that already. How else do you explain 18 years of going to doctor after doctor without any improvement.
Suppose he'd instead said that he'd been to astrologer after astrologer and found no improvement, in spite of the recent realization of the placement of Mars. You'd probably not tell him to keep trying to find an astrological explanation... so why are you so confident that there is a medical explanation right around the corner?
The body has incredible ability to heal itself. By following my advice (after 18 years of following yours) he may actually stumble upon some information that helps lead toward a solution. For example:
- Maybe he gets no exercise at present because he uses what energy he has for work.
- Maybe he has a rare food sensitivity. If so, eating the diet I suggested may make it much better or much worse. In either case he gains information.
- Going to a relaxing place (CR has the happiest population in the world) will help alleviate all the existential stress he's taken on after 18 years of dealing with this illness.
My suggestions are based on big picture lifestyle approaches that actually do work. Medicine does not even remotely consider suggesting such a therapy because most people could never actually follow it. I predict that if you could do a study where people followed the therapy I proposed you'd find it was more effective than many of the most lauded pharmaceuticals and surgical techniques in use today for a variety of ailments.
There is also the chance that this guy has some exceptionally rare condition that is not even known/understood by medical science. If so my advice would be to just enjoy life as much as possible rather than become a human lab rat.
> I actually gave this guy different advice a few years ago on Slashdot.
I can't tell one anonymous poster from another.
> At the time, I told him to go to the most prestigious academic medical center in his area and not to trust the average primary care doctors.
What changed your mind ?
> So I assume he's done that already.
How can you be sure ? How do you know for sure it is the same person ?
> How else do you explain 18 years of going to doctor after doctor without any improvement.
Mis-diagnosis. Possibly unresponsive to treatment.
Mistakes can and do happen.
> Suppose he'd instead said that he'd been to astrologer after astrologer and found no improvement, in spite of the recent realization of the placement of Mars. You'd probably not tell him to keep trying to find an astrological explanation... so why are you so confident that there is a medical explanation right around the corner?
Because each and every of his symptoms ties in with at least two fairly common and very serious conditions that are in spite of being so common routinely mis-diagnosed and/or mistreated.
> The body has incredible ability to heal itself.
Right, let's use the power of our minds to heal. Some guy not personally known to you comes with a veritable laundry list of symptoms and instead of sticking to tried and true medicine you want him to practice yoga.
> By following my advice (after 18 years of following yours) he may actually stumble upon some information that helps lead toward a solution.
Or he may waste 3 more months on a trajectory that seems to be deteriorating to the point that he's asking total strangers for help. Not that we're going to be able to give him concrete advice, only a very qualified doctor could do that. But instead you advise him to get away from it all.
> - Maybe he gets no exercise at present because he uses what energy he has for work.
> - Maybe he has a rare food sensitivity. If so, eating the diet I suggested may make it much better or much worse. In either case he gains information.
It may be, or it may not be. But changing so many variables at once is never going to give him information, you do that by keeping a diary and slow variation over time so you can isolate a cause.
> - Going to a relaxing place (CR has the happiest population in the world) will help alleviate all the existential stress he's taken on after 18 years of dealing with this illness.
That's great, and I'm sure the Tourist Board of Costa Rica approves of your message. But that's not medical advice.
> My suggestions are based on big picture lifestyle approaches that actually do work. Medicine does not even remotely consider suggesting such a therapy because most people could never actually follow it. I predict that if you could do a study where people followed the therapy I proposed you'd find it was more effective than many of the most lauded pharmaceuticals and surgical techniques in use today for a variety of ailments.
Poppycock. Surgery and medication when needed are effective ways of dealing with a large variety of ailments, and good lifestyle can help you avoid those for a long time.
Lots of people die on an annual basis because of following the well meant advice of quacks that have little knowledge and too much self confidence.
Red flag right there "Medicine does not even remotely consider suggesting such a therapy because most people could never actually follow it", if a change in life style was all that is needed to treat Chron's, Lyme's and a whole pile of other serious diseases you can bet that plenty of people would be following it.
I'm not saying that there are no individuals that would not benefit from changing their lifestyle, but we can't all live in Costa Rica and even some of those that could follow it might end up seriously dead if their conditions are not treated by an application of medical knowledge.
> There is also the chance that this guy has some exceptionally rare condition that is not even known/understood by medical science. If so my advice would be to just enjoy life as much as possible rather than become a human lab rat.
"Red flag right there "Medicine does not even remotely consider suggesting such a therapy because most people could never actually follow it", if a change in life style was all that is needed to treat Chron's, Lyme's and a whole pile of other serious diseases you can bet that plenty of people would be following it."
Wrong. Most people are inherently lazy and lifestyle changes are difficult, all-consuming commitments that a lot of people aren't willing to undertake. Coincidentally, I listened to an intriguing story on NPR (sorry, couldn't find a link) last weekend in which the MD was proposing that depression is a lifestyle disease along the same lines as most cancers, heart disease, and most of the other top killers in the western world. Those things just don't exist in [places like] rural, coastal Costa Rica (or any other aboriginal environ). This isn't to say I wholeheartedly support Grandalf's proposal, but I don't agree that total reliance on the medical establishment is a great idea, either.
My family is fortunate to have a PCP that will call us and say "Here's my latest research [from reading journals, talking to peers & specialists, etc] -- would you like to come in and talk about it?" Even though we often have to wait an hour or more to see her, having this kind of a personal, caring relationship is priceless.
You are correct. Most people don't realize this about how medicine works.
Eating a healthy diet and getting vigorous exercise will cure type 2 diabetes, heart disease, and help with many others. Medicine ignores the early (mostly harmless) incarnations of these and then advocates drug and surgical therapies when it's too late to remedy them via lifestyle.
My answer shows that I have confidence in medical science to do what it can do (which the guy has tried for 18 years) but not to work magic.
Medicine works if you get athlete's foot or asthma or if you need blood thinners or antibiotics... and occasionally there is a Lorenzo's oil sort of story.
So you're telling this guy to pray to the medical gods that someone will come up with a miracle cure which he can magically ingest in pill form and then go back to a normal life.
This view dramatically oversimplifies the human body. One achieves health by eating a nutritious diet, exercising vigorously, by breathing clean air and drinking clean water and by having a calm and focused mental state. Only then can the body's complex systems function properly.
You fall into the Cartesian trap of mind/body dualism. It's all the same material. If you're not exercising vigorously, eating a superb diet, relishing and enjoying life, and enriching relationships with people you care about you are simply not going to be as well/healthy as you could be.
I imagine the medical technology of the future will actually be machines that twist the patient into yoga poses. Eventually we'll even see machines designed to trigger the adrenaline response of surfing a big wave or fucking a hot person, etc. All in the name of healing.
Don't knock it unless you've lived it. Try it for just 30 days. Eat tropical fruit and rice and beans, exercise a lot, swim in the ocean every day, read for pleasure, plan some surprises.... and then take a moment and observe how you feel.
Since we cannot instantly experience the impact of lifestyle, our brains average our experience and we don't realize how horrible life actually is in our unfit, unhealthy bodies... we have a hunch, though, which is why we define ourselves only on the basis of what is above the neck.
For about $20 a day all inclusive (shared dorm + 3 square meals) you can volunteer in their national parks for pretty much as long as you want. I did this two summers ago and it was fantastic. At night you pretty much have the whole place to yourself. Highlight was sitting on a bench watching the moonlit Pacific ocean and having an ocelot walk right by me.
Just go to Tamarindo first and spend a few days there until you find a slightly more isolated place to go. Tamarindo is touristy but very small and so one does not need to go far to find untouched beaches and very inexpensive lodging.
You just go. There are very few places in the world you can't just show up and get by with no language skills, knowledge of the area with a very little bit of money.
I was camping on the east coast of Oahu in a free campground one time and met these two brothers in their 70's. One of them had some medical condition, something related to being allergic to "everything". They had tried many things, traveling all over the world, and this location, with the wind coming off the ocean, sleeping in open air, no tent, with a canvas (not plastic) tarp as cover from rain, eating only fresh local foods, was the only thing that worked for him. Who knows, if I was in your shoes, I'd try anything.
We call it the Windward side, not the East Coast.
In addition, there is a sewer line running down most of it. It overflows every time it rains too much.
Maybe on Maui, or Kauai, or the "Big Island", but not here.
Have a recommendation for finding a place to stay? Is it best to just go down there and figure it out? I have heard the internet is very good down there, do you know? I have been thinking about this for a long time, thanks for the post.
Lifestyle is THE #1 cause of illness. ESPECIALLY of the type listed here. Detox is the way forward, stop throwing drugs at the problem and trying to put a name on it!!
This advice is fantastic. I think people are too afraid to take drastic changes in their life and this sort of change will offer many peripheral benefits. I plan on writing some articles about this.
In short:
This 3 month change will break your daily routine. People are extremely habitual in their patterns. This individual could be extremely allergic to some mould found in the coffee shop they go daily - and have no way of ever knowing. Basically making this drastic change will force the individual to change their entire life, habits and thinking. Consider it a reboot of your entire system. Reminds me of:
A novice was trying to fix a broken Lisp machine by turning the power off and on.
Knight, seeing what the student was doing, spoke sternly: "You cannot fix a machine by just power-cycling it with no understanding of what is going wrong."
Knight turned the machine off and on.
The machine worked.
I would suggest a few small modifications to your points. Oils are extremely healthy. I would have copious amounts of vegetable oils in the diet suggested since it contains no other sources of fats. Coffee and tea can be a fantastic natural stimulant with next to zero side effects. They have been used forever. People traveled at high risk across the world to obtain them - they do have some value.
The nutrition advice I gave is still going to be 10% of calories from fat which is plenty. And, it will allow the person to quickly reach a fairly ideal weight, which may help with a variety of other issues.
It's VERY difficult to eat <= 10% of calories from fat, so chances are it would be closer to 20% without any deliberate effort to consume oils.
Also, I love coffee but I advised against it for 3 months because it's a fairly powerful drug and I find that when I quit it my sleep/wake balance is improved...
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.
If you want to crowdsource, obtain all your lab results that have ever been done, scan them, and post them. Those medical records belong to you. Black out your name if it worries you. (Edit on afterthought: if you're considering doing more tests and if your insurance situation is poor and if you're American, look at personalabs.com, who will order your labs from LabCorp nearly anywhere in America at just a little above cost - the difference is almost certainly going to be huge, and if the doctor isn't helping you, it's good to know you're not locked into getting the doctor to order labs for you.)
That said, it's pretty clear there's something funky immune going on - the IgA thing, the initial response to Vitamin D (and I second or third the recommendation to get sunlight - go for a walk every day; it'll do you general good anyway). You've got some weird digestive stuff going on, and so my personal red flag goes up, which is intestinal flora.
(Note also: tracking this stuff down is going to be a personal struggle, it'll take years, and there is a truly immense amount of bullshit in the world, so take nothing I say, or anybody else, without a large helping of skepticism.)
My daughter has Crohn's Disease and my son has minimal change disease (a kidney inflammation). After my daughter was hospitalized, we did a lot of research and found out what amazingly bad things can happen as a result of poorly managed intestinal ecology, and after making changes to our diet - some of them pretty profound - she's been symptom-free for three years, our son is improving, and I've lost weight as well.
So here's what I recommend: go to your pharmacy and purchase some sachets of "VSL #3", a probiotic mix. Don't follow the instructions on it; use it as yogurt starter. Yogurt is dead easy to make; get one half-gallon of organic whole milk, one quart of organic half-and-half creamer, mix a cup of plain Dannon yogurt and one sachet of VSL #3 into them as a starter, put it into a gallon glass jar (available from Walmart) and put the whole thing onto a candle warmer for 24 hours wrapped in a towel.
After 24 hours, you'll have three quarts of the most electrically sour yogurt you've ever tasted. Eat that twice a day for a while. If you want to get serious about this cure, take a couple of weeks and don't eat any complex carbs (that's way harder than it sounds). If you've really got an intestinal flora imbalance (you're presumably American, so you do, trust me) and if that's your root cause, you'll feel better in a week. You'll probably feel somewhat better in a week anyway, but there might be more going on.
That's my two bits. I applaud your effort to take your health in your own hands, and if there's anything I can help with, get in touch (email's in my profile).
Vivtek, thanks for the thoughtful reply. That's great that your daughter has shown such an amazing improvement. I actually tried the pro-biotic, anti-candida route about 10 years ago. I remember eating lots of Stonyfield Farms unsweetened yogurt. :-) Was great for losing weight, but not much else in my case.
You're right that logging and tracking is very hard. It seems cruelly unfair that brain fog is such a factor, since that makes it impossibly hard to figure out what might be wrong, and what to do to fix it. I've tried so hard to find a pattern.
Owing to my fatigue, I must admit that eat a lot of prepared foods. But generally they are the healthy ones- Healthy Choice, Lean Cuisine, etc. Well, as healthy as a box of frozen food can be, anyway.
I do try to get sunlight, but it seems to have a paradoxical negative effect on my now- I feel even sleepier if I take an noon walk.
That's one of your first problems. Start eating real food. Look up the Paleolithic Diet and/or the Longevity Diet; also do some research on Dr. Shulze and his natural cleansing kits/programs (they've helped me and many other people I know).
Have you checked Vitamin B levels? My friend has very similar problems that are solved by getting a B12 shot. She has to get one weekly as her gut cannot absorb it. It's probably easier to just get the shot and see if it helps.
I just showed this to my friend who is a doctor, he says:
--- quote ---
It's a possibility of pernicious anemia, which would cause B12 to be low.
It's an autoimmune disease which he has a predisposition with Hashimoto's.
He should get a complete blood count with differential, Serum Vit B12 level, Anti-parietal cell antibodies, Ant-intrisic factor antibodies and Methylmalonic acid level.
Also he should probably go to a hematologist or immunologist as they are more likely to think of this diagnosis.
--- end quote ---
He says it's impossible to diagnose without seeing the patient, and without seeing the bloodwork, etc. So, go get yourself checked out by someone who is familiar with this disease.
Best of luck to you.
Edit: I noticed that someone else said the same thing below. Nonetheless, hope that something here helps you.
My friend... I sent you an email as well... you need to start by eating REAL FOOD. Food that you can eat right off a tree. Animal parts that are whole and grown organically.
This is such an easy thing to do. Just take one trip to the grocery store and don't buy anything with nutrition label on it (all organic food).
I have been getting a jar of whole milk Bulgarian yogurt (don't remember the brand name) from Whole Foods for the past month or so. It has dramatically improved my intestinal health (without any other change in my diet). It has no additives, can be used as starter yogurt and is somewhat tart in taste (which is how real yogurt should taste).
Try taking a noon walk and a nap, then. That's what I'd do.
The problem with the dietary approach is it's nearly impossible to do unless somebody in the family is basically working exclusively on food preparation. The healthy food can't hurt, but probably isn't helping that much.
Well, if you can't think of anything else, do try making your own yogurt; they don't let storebought ferment completely because norms don't like sour yogurt - and a true lactic acid bacteria yogurt is like putting your tongue on a battery.
Maybe using something like Fit Day to help track your diet, and how you feel could help. http://www.fitday.com/ I believe they have nice graphs and things that you can use to see patterns.
On another note, the concept of a 'crowdsourced diagnosis' product is an interesting one.
You'd post anonymously your malady, and have only verified MDs or med students / professionals register and offer up things to test for. They vote up / down (a la HN) and the most common suggestions rise to the top. Patient gets relevant tests, posts the test results for each suggestion. As they go down the list and cancel out each one, eventually you'd get the correct diagnosis, right?
It would help to keep comments & speculation to a minimum, do things very scientific. After a while any doctor could come in and use the scenario as a reference or framework. Kind of like an open source diagnosis.
Does this exist? Someone seriously needs to make this if not
The malpractice liability would make this very difficult for doctors, I'd think.
And yeah, don't discount the layman. Some of us really aren't kooks, and some doctors are. The point of crowd sourcing here would be to replace an artificial quality metric (possession of an MD) with an organic one.
What the medical establishment would think of this is a puzzler. Well -- no. They'd hate it with the heat of a thousand suns. But more to the point: what are the legal challenges to running this kind of service? I dunno. I'm not sure I want to find it out.
The medical establishment might hate the idea, but I think most doctors would like it in action.
The series "House" is not a good depiction of what doctors do. "Scrubs" is a lot more accurate - busy professionals diagnosing and treating mostly unsophisticated patients.
Yeah, all the doctors and med school students I've known, I think, would think it was pretty cool - I'm really wondering about how hard and how fast you'd get sued, though. This kind of service would really fill some serious needs out there.
Seriously, if anybody wants to handle the business end of this one, I am so on board with contributing both code and semi-informed lay medical opinions.
I don't know how strongly I can express my agreement with this. I am not an all-out "doctors are kooks" type, but the ease with which kook-types can become doctors seems too high. I have had several bad experiences with doctors being fundamentally unscientific or ignoring what I'm actually saying or recommending treatments without logic/evidence. They are of course great if you have something simple and common like a broken leg but they are not special because they wear white coats. They don't have to get 100% on exams, they don't have to stay up to date with the literature, they don't have to be of a scientific mindset. It's a nicely paid job. There are budget/time pressures on what they can do with the endless stream of ill people.
See here's the problem with the layman: Yahoo Answers.
I didn't have health insurance for years and to cure some maladies I would look it up online. Forums of laypeople just get bogged down multi-page threads full of speculation and misinformation. Sure, you get some real answers once in a while but for the most part its just all anecdotal suggestions, 'you have cancer' or 'drink some more tea' type comments.
Maybe the comment system for laypeople would have to be validated by some sort of 'buried until proven legitimate' type of user rating system.
And as far as malpractice goes, there are many medical advice sites there are out there with legitimate doctors. Usually they just preface everything with "consult your doctor first". I think the difference between this and that would be its objectiveness - the doctors wouldn't necessarily be offering up advice, just suggesting & voting on tests and treatments.
What the medical world would think of it, I don't know. That's up for the market to decide I'd think right?
Or the lack of malpractice liability might make this a success. I'm guessing many times doctors tend to go with the "safe", or common diagnosis, which wouldn't be the case here.
But a certain set of dressing is probably necessary for this to work. Maybe advertise it as a training tool for students?
They only have expertise on a specific (set of) disease(s) and are prone to identifying symptoms as problems that can be solved by the hammers they know so well. Professionals have received training in doing diagnoses and will consider a wider variety of options.
Abstracting across a variety of people and thus a variety of hammers is the entire point of crowd sourcing. That's why you don't call it single-person sourcing.
I made a comment on this a few threads above. Yahoo Answers is a prime example of laypeople making suggestions. Sure there are people with experience and solutions, but for the most part you get so much background noise with people who just speculate on unrealistic solutions or tell you to take XY obscure herb.
The point here is that people frame medical problems on top of their own experience. And everyone's experience is different. You can have the same symptoms for countless different diseases.
My thinking is that the only people who can see this objectively are medical professionals who have different folks coming into their office every day. Everyone else is biased by their own experience. Does this make sense?
I've dealt with a lot of medical professionals. They're biased by their own experience as well, plus they're biased by the latest medical fads (don't think they don't exist), and they're biased by the ads they see in JAMA. They're not selected for being clear thinkers - they're selected for being good at rote memorization and kissing authority ass, Gregory House notwithstanding.
Some doctors are fantastic. A lot are not - and a non-fantastic doctor plus a well-educated patient is a sure recipe for disaster, take it from me. Add an uncommon disease into the mix (and as our nephrologist says, there are categories of disease, like kidney disease, where every case is a new book) and the inescapable conclusion is that if you've got a chronic illness you are on your own. If you're lucky you'll find doctors that can give you good advice. But it's not likely to be the first guy down the road, either.
Your larger point, that Yahoo Answers is filled with garbage, is very accurate. Most forums on any topic are filled with garbage, but health garbage has centuries of history and its promulgators are untiring. You learn to filter that crap out.
What would be better - way better - is some combination of crowd sourcing and solid lay-medical journalism, investigating some of the extraordinary claims in search of extraordinary evidence (or usually lack thereof).
I think you're right, the combination of layman knowledge and professionals might make the most sense. The big issue here is how to weed out bad advice
I've worked in the medical / pharmaceutical industry for 5 years, had a lot of close contact with all kinds of medical professionals and surgeons and let me tell you - they will hate this idea and most likely not spend any time taking in any of the (potentially useful) data on there.
More and more you come across notes in a patient file that say mention the patient read something on the net and is convinced this is his problem, countering what their doctor is telling them and as a result being a very difficult patient. I'd imagine most doctors absolutely hate pseudo medical websites because of this.
There have been some stories in the past of parents taking the medical care of their "undiagnosable" child in to their own hands and coming out successfully but the stories are few and far between.
Just recently I was reading on a forum about a small medical issue of my own and the amount of crap advise was unbelievable. People will feel that their doctor is "wrong" if he doesn't give them enough attention, regardless of whether or not he is. Getting dozens of replies to your described problem may be encouraging but my opinion is that a medically trained professional is far more likely to be "right" compared to "the crowd".
You can get round liability issues by making users comply with the terms and conditions but I'm not sure that as a developer I could live with the potential guilt of misguiding hopeless patients with an app I wrote.
Having said that the OP's situation must be very frustrating and crowd sourcing could be a good strategy, in this case. One success story was a post on reddit where someone with bad acne was almost completely cured after a redditor suggested ditching all the meds and simply sleeping on a different, clean pillow cover every night.
So "simple" solutions to complex medical problems do exist. I'd certainly give Vivtek's original post a try, you have nothing to lose.
Without loss of any generality, I can tell you that in the case of our daughter, the information we eventually tracked down and applied was far, far, far more useful than the trained professionals we were working with at the time. Her gastroenterologist had come highly recommended, was dedicated, gave us all the time we needed, and was dumber than a bag of hammers, poor man. Yeah, he sure did think we were difficult patients, I'll give you that - but that note in the file represents the doctor's insecurity, and not necessarily that the patient is an idiot. (And I really must hasten to agree that there are a lot of idiots. It's a case-by-case thing.)
People research their own medical issues when they're not getting satisfactory treatment. Simple as that. If you had a family doctor you trusted, who you felt was giving you the straight-up truth about what was wrong, what he was doing, why things were happening, you wouldn't need to go reading poorly spelled forum entries by mental midgets using crystals.
In our son's case, we went through seven nephrologists before finding one that was satisfactory. (Well, actually two of the others were OK, but logistically more difficult.) Our dealings with Riley Children's Hospital's head nephrologist were disastrous, truly disastrous, another bag-of-hammers case, and she's respected in the field.
But the problem with parents taking medical care of their undiagnosable or untreatable children in hand is that most people don't know how to separate bullshit from valuable information (of course, this applies even if you're dealing with the professionals), and the deck is stacked against you in major ways. We're kind of an exception. I've been told I should write a book about our experience, but jeez, who's got time for that?
Balance this against some very good experiences we've had in the past with physicians treating my wife, but seriously - medical training is overrated, to an alarming degree. As is most training, of course, but medical training is so fetishized that it stands apart.
Ok, so whats the difference if someone posts to reddit or a site dedicated to solving problems? That person is still going to consult the masses, they might as well be educated.
And my thinking here is less about it being a generalized medical board and much more about concentrating educated brainpower on solving chronic conditions.
You could flip this around and make it a private tool for the doctor to use in extreme situations. Not even let the patient use it.
Say you live in podunk South Dakota. You go to the only doctor in town. Do they have the expertise to solve a complex condition? What if they aren't very good? How are they supposed to help you if your other options are out of reach? In this scenario a doctor with limited experience can tap into the crowd and get specialists chiming in from areas they would never think about. Pretty useful solution, I'd say
This would probably be an extremely helpful resource.
From the personal anecdotes file: I had one foot go completely limp - it had feeling and normal bloodflow but I couldn't tip the foot up, causing considerable trouble when walking. It felt like the muscle was dead.
I went to three different doctors, including a celebrity in the field and none could figure out what was wrong. In the end my friend's friend, a doctor, figured it out based only on second party descriptions. He correctly made a couple of assumptions about my physique and working environment and made a recommendation which solved the problem within a few days (there was pressure on a nerve running under the knee due to a bad sitting position and very low body fat insulation).
I recall Steve Yegge relating how a simple internet search enabled him to correctly diagnose a family member's fatal condition which doctor's had failed to do. I have had similar experiences.
Going to the doctor so often feels like a crap shoot. Even if you get sent to a specialist in the right field (which totally depends on your GP's interpretation of the problem) you only get the benefit of one person's experience, how good (or not) that professional may be.
Just checking back on comment, blown away by all the activity. If someone makes this a reality please post the progress on HN I'd be so proud to see this idea executed
If you want to crowdsource, obtain all your lab results that have ever been done, scan them, and post them.
The other effect of doing this might be some media attention; this is a case where this could actually be a good thing, as you are going to get more doctors listening in to mainstream media rather than a narrow internet forum not even aimed at them.
Not related so much to the OP, but the Crohn's/yogurt thing...
I've had Crohn's since adolescence, and I've found that eating yogurt (with live cultures!) seems to keep things working well. I recommend a purpose-built yogurt maker. I got one for about $15 from Amazon. And Vivtek skipped an important step: you've got to kill any bad stuff in the milk first. Heat it to 180 degrees, just before boiling. Then be sure to let it cool to 110 before introducing the culture, else the heat will kill the culture.
Along with this, you should be aware that what you eat and drink has an effect on your intestinal flora (I think this is part of what Vivtek was getting at). That is, the friendly bacteria like to have access to certain kinds of foods. And on the other hand, other intake may change the environment in a way detrimental to the good stuff, or even to encourage the not-so-good stuff. These relationships can be difficult to see, because the effects aren't noticeable until quite some time after the food is eaten.
Ha! I didn't skip an important step - I told him to buy organic milk! Organic milk is ultrapasteurized, and thus sterile out of the box. Although, granted, I should have drawn more attention to that point. After the first questionably cheesy-smelling batch of yogurt, he would have really cursed my name.
Buying ultrapasteurized saves a lot of hassle - you don't even need the thermometer any more at all.
We used a purpose-built maker until I dropped the plastic jar on the floor - the resulting yogurt explosion covered the entire kitchen with a relatively evenly distributed polka-dot pattern, floor, walls, ceiling, everywhere. The kids really, really tried hard not to laugh.
I considered buying another, but with four of us in the family, making two quarts at a time just wasn't enough throughput; the gallon-jar solution works great for me. I'd already been switching over for some batches, so I retired the yogurt maker entirely after the explosion.
Most milk is pasteurized so the heating step isn't needed to kill bad stuff. It does have another affect: it denatures the proteins and makes for a thicker and creamier yogurt.
Agree about yogurt. It's the easiest way to restore your intestinal flora. Sometimes needed also after you have been on antibiotics (especially those with a wider spectrum of germ fighting abilities). Another simpler and faster way of making yogurt is:
- Heat 1/2 galon of whole milk to 131 F (55C)
- Wisk in a yogurt and VSL#3 (which is a great mix of live cultures - no required but definitely better - VSL#3 only available in some pharmacies though - call ahead).
- Preheat a large cooker with a cover by boiling water at max temp in it for 15 minutes. That will kill all bad bacteria in it.
- Empty the water and place the milk mix in glass jars in the cooker and close the top off.
- 12 hours later you have fantastic yogurt which you can kee in the fridge for up to 10 days.
Good luck and good guts! ;-)
Dan
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.
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.
"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?
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.
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).
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.
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?
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.
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.
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.
When you hear hoofbeats behind you, don't expect to see a zebra.
This aphorism is taught to doctors in training. It's like Occam's razor for the medical profession. It's not a bad heuristic, but it necessarily leads to a somewhat terrifying error rate when diagnosing people who actually do have the rare diseases.
I'm not saying you do have a rare disease, but if there is something wrong with you and you've been to many many doctors, it seems more likely than a common disease. I had a rare type of cancer and was misdiagnosed for a year prior to correct diagnosis.
Thanks, I didn't know about that list. (I feel slightly dangerous knowing it now). That's kind of the story of my life though- self diagnose (sleep apnea, lyme disease, etc), and then have to fight the doctors to get tested.
> When you hear hoofbeats behind you, don't expect to see a zebra.
Unless you're in parts of Africa, in which case you might well see a zebra. Apparently in South Africa medical students are told that when you see a small bird on a branch, think sparrow rather than canary. Same principle, different animals!
To be careful giving medical advice, and not sounding like I'm a holisitc nutjob. This is completely a personal experience and YMMV...
I have Hashimoto's Throiditis as well. I've spent ~15 years struggling with Synthroid - constant sensitivity to heat & cold, exhaustion, etc. I went through constantly fluctuating dosages, etc. My doctor tried mixing Cytomel in which helped a bit but not completely. I've had a lot of trouble with other synthetic drugs in the past (I don't seem to metabolise them well) and switched to "Natural" thyroid (quite literally dessicated thyroid gland from a pig - it contains the exact hormones the thyroid can't make with Hashimotos). It has made a HUGE difference for me. There have been some supply problems in the last ~12 months which seem to have smoothed over (It's available in a few brands - generic is I think just "thyroid", there's also Naturthroid and Armour).
I am not a doctor, and by no means a homeopathic nut - in this case the difference between this and Synthroid is it's an exact copy of the hormones you need rather than a synthetic analog (before Synthroid came around, for ~100 years this was the standard thyroid treatment). It has made a big diff for me after years with no luck.
It may help - in the last year I've had a big improvement from switching (weight loss, sleeping better, etc etc).
OP here. Wow, just wanted to say thanks for the hundreds of comments and emails. I'm touched (and a bit overwhelmed!) by the response. There are so many suggestions that it's hard to know where to begin. I'm trying to sort through the many responses and do some triage. I've already been down a number of paths that have been suggested (not to discount them, but I'm trying to maximize my chance of finding a solution, and not just go in circles).
At this point I really do feel like I need a good doctor to help manage this, and would really appreciate tips for a doctor in or near the Cleveland area. Thus far I haven't had much luck in that department (example- I have an appointment with an Endocrinologist at the Cleveland Clinic coming up- in OCTOBER!) My current doctor is now balking at my requests for various tests, so it's time to move on. Recommendations really, really welcome.
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.
You might want to see if you have Celiac Disease. It would fit the symptoms you describe about indigestions and I believe could lead to being tired and lack of energy.
OP here again. Just got back from my dr visit, armed with questions from HN. Doc is open to investigating Celiac, so he took some blood for that. He's going to recommend me to a gastroenterologist who may pursue an endoscopy/biopsy. I'm tempted to start avoiding wheat now, to see if it has any positive effect. But doc also told me to not do that until after seeing the gastro, as it will affect any test he may do.
Thinness is not an issue, since sugar is not off limits.
A week won't do it on the diet change, I had to go nearly 3 months before my system got back to normal. Amd Vivtek is right if you want to test this just read every label and do some research for example soy sauce is out, but it just isn't obvious.
As far as this being a possibility, it doesn't sound right, but since it is pretty easy to test for the next tiem you have a blood test you can have them check it if you want.
> Thinness is not an issue, since sugar is not off limits.
Paleo eating excludes refined sugars completely, and asks you to reduce fruit. Meat and veg, nuts and seeds, some fruit, no grains, no dairy.
> A week won't do it on the diet change,
Totally agree here. And switching from a traditional high-carb, low-fat diet to paleo leads to 2 or 3 weeks of feeling like crap. We're 5 weeks into our Paleo Challenge at the gym I own, and most people are feeling like a million bucks. We do our best to impress upon them that the first 2-3 weeks will be difficult.
I did a low-carb diet long before I knew I had celiac, but it still affected me (and in fact I was frustrated when the low-carb promise of energy did not materialize; in hindsight I now know it was because it was dominated by the celiac-induced problems). The problem is that a low-carb dieter may not feel bad about having small quantities of wheat in their diet (very lightly breaded meats, or any of the other numerous otherwise-fairly-low-carb items that have a fine dusting of flour in them), and it only takes small quantities to still be affected.
I eat to manage my glycemic index now, but I unfortunately can't honestly split what is that part and what is getting off of gluten, I just know both have proved necessary to me. But of the two, for someone with celiac getting off the gluten is by far the more important.
I am pleased to announce that soy sauce does not have to be out: http://surefoodsliving.com/2007/05/kikkoman-soy-sauce-claims... If you are hypersensitive it may be a problem, but it works for me. I have now consumed quite substantial quantities of soy sauce in the past few months with no effect at all.
I do stick to the Kikkoman name brand, but this turns out to be easy, it's the golden standard. Usually if it's not Kikkoman, it's fake soy sauce anyhow which is also safe.
Celiac is a really wild disease, in that it can cause an enormous variety of symptoms due to the nutritional deficiencies it can cause, and also can fail to cause them just depending on your own body. Consequently, it is really difficult to diagnose. My primary symptom was iron-deficiency anemia, for instance, but the traditional answers that start with that symptom would have been wrong. Also, despite malnutrition, I was also obese. (Not "clinically obese", but obese no matter how you slice it.)
There are two things going for this diagnosis (even as I tip my head to the "don't trust internet diagnoses" crowd). First, per chasingsparks' excellent point, you shouldn't look for something rare when something common may explain it. In fact, Celiac is not a rare disease; estimates are now hovering around the 1 out of 133 people in the general US population, which is not really a "rare disease". The odds of at least one other person reading this message having Celiac without knowing it is actually virtually 100%, because of the second thing: It is known to be underdiagnosed due to the difficulty of diagnosing it correctly. It appears to match everything you've described, up to and including a known correlation between Celiac and other autoimmune diseases (especially when left untreated) and raised IgA. Testing for IgA is a standard first step of a screening: http://www.labtestsonline.org/understanding/conditions/celia...
With this you should be able to find a doctor who can help you confirm or deny this diagnosis, assuming you have not yet tried a gastroenterologist.
If there are money issues, the "don't eat gluten" test rksprst mentions is actually as good as the medical tests, if not better. Stop eating gluten for two weeks, or preferably three. If you feel better after that, then you may be on the right track, but wait, it might be placebo. To be really sure, have yourself a big ol' bowl of pasta or pizza. In about 5-7 hours or so, if you're suffering from Celiac... you'll know. And I apologize for that night. But at least you'll know after that.
Be aware you can not do both. Celiac tests only pick up "in progress" Celiac, if you cut out the gluten for three weeks, then go to the doctor, you will quite likely test negative even if you have it.
At your age, full recovery could take 3-4 years, but you'll start feeling better right away.
I feel your pain. My father was diagnosed in the nick of time for me to figure out what my problem was. I too was starting to lose enough cognitive power that I fear I would have lost my job.
Edit: Also, if this does turn out to be the problem, start taking a multivitamin. Many people say that multivitamins are not helpful for normal people. This may be true, I honestly don't know. Celiac is not "normal people" and I've found it helpful well beyond what "placebo" would cover. You may be able to stop when recovered, I'm just barely getting to "recovered" myself.
And yes, this could be me having a hammer and seeing a nail. Still, it does fit, right down to the difficulty of getting it properly diagnosed.
>Stop eating gluten for two weeks, or preferably three. If you feel better after that, then you may be on the right track, but wait, it might be placebo. To be really sure, have yourself a big ol' bowl of pasta or pizza. In about 5-7 hours or so, if you're suffering from Celiac... you'll know.
This. A friend of mine is a celiac and didn't know throughout high school; she and her family simply thought she had a very weak immune system since she was sick so often. (In fact, she often ate crackers to calm her upset stomach, which obviously exacerbated the problem.)
To clarify, though, the big bowl of pasta comes after the three weeks of "no gluten." If you're suffering from Celiac disease, as jerf said, once you take in a large amount of gluten after going gluten free for three weeks, you will notice. It will be like night and day. If you feel fine after that pasta, you're not a Celiac.
I'm not a doctor, but this is a pretty clear cut test.
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).
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.
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.
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).
A large number of autoimmune conditions, including lupus, can be mediated by steroids such as prednisone - have you tried immunosuppression meds or other steroids?
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.
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.
Reading your post, it seems that you've given everything in traditional medicine a serious shot, and it failed to help. I honestly don't know what would help, but since you're asking hackers, I suggest the following "hacks".
1. Take time off from work, if you can. Try two or three months. During those months:
2. Exercise. Make your body work. Start with low-impact stuff: biking, rowing, push-ups, pull-ups. Find a trainer who can help you get into circuit training. Train with weights. It's amazing how much better the human body works when it has the strength to support itself.
3. Change your diet. Considering the extremity of your digestive problems, you probably need an extreme change. Try raw food veganism. I've anecdotally heard of it working miracles on people with digestive trouble, and it certainly seems like the healthiest diet imaginable. You'll have to work pretty hard to receive correct nutrients in good amounts. Read http://www.nytimes.com/2010/05/13/sports/13runner.html for inspiration. You may need to find a nutritionist to help out, but in the meanwhile, try reading this blog: http://www.choosingraw.com/
If raw veganism isn't working, the "paleolithic diet" or "specific-carbohydrate diet" are what worked for us (the latter, especially; they're essentially the same thing, but Google will find different communities for you).
Juicing may also work for you; it didn't for us (except insofar as fresh juice is so incredibly much better than bottled that it was worth it). Couldn't get the kids to drink vegetable juices without so much grape that the sugar hit seemed exorbitant.
But I can't agree more with #1 and #2 - exercise will help.
Tai Chi is good for helping you lift yourself. Yoga's good, too - and both combat stress, which has to be a factor here.
Generally I think a complete life overhaul for a couple of months would be worth a go. It might turn out that the condition is environmental rather than medical. Or it might not. Either way, it's probably worth finding out.
You could try looking into what this guy promotes: www.marksdailyapple.com - basically trying to eat and exercise in a way vaguely similar to our caveman ancestors (or at least his interpretation of our caveman ancestors).
And if you can go somewhere sunny for a few weeks that can't hurt either.
He makes it easy to get started by email & phone. Then, as needed, he's only an hour flight or an 8 hour drive from you.
He has an incredible track record helping 10,000 people with all kinds of problems who hadn't found relief any other way. As an M.D., he can adjust your drug regimen and as a natural healer, he won't be afraid to explore other possibilities often missed by other physicians. Who knows, maybe you could be Number 10,001. Definitely worth checking out.
^^THIS is the reason why I normally refrain from contributing to any post regarding health, politics, religion, or popular culture.
But OP asked for help and I figured that responding to a plea for help from another hn'er takes precedence over personal policy.
OP needs help. I'm contributing. Unlike many of the other responders, I'm not giving advice because I am not a health care professional. So I referred OP to the best resource that I know.
I figured that it was only a matter of time before some poser would play the "quack" card.
Tell me, richardw, how familiar are you with Dr. Fuhrman's work? Have you read any of his books or peer reviewed scientific papers? Have you gone to any of his talks? Have you met any of the hundreds of other health care professionals that have followed his work and accepted his mentorship? Have you ever seen him personally or referred friends or relatives? Have you met any of the thousands of people he has helped?
If so, please share your experience with us and OP. Otherwise, just step aside and allow OP to the receive the feedback he seeks. You're not helping.
Wow, cranky guy. I didn't mean it as forcefully as it may read.
That page I pointed you at is an attempt at a quack filter. If Dr Fuhrman passes it, then great. When someone sends me an email with extraordinary claims, my first action is to Google their info with words such as 'hoax'. In this case, that page and his name came up pretty fast.
So what I would do is check extraordinary claims particularly carefully. That page looks like an excellent starting point.
Btw - you don't know me, so losing your rag and throwing around words like 'poser' probably says more about you than me. Get that checked out.
You attacked the guy pretty harshly, basically insinuating that the dude he suggested is a quack.
You should expect a response like his when you do that. If that wasn't your intent, keep a eye on your communication methods - written passages convey the tone assumed, even if that is not the tone you set.
No, that was hardly harsh. Guy claims a hero is the fixer for all ills, I point you at a quack site. Can't handle that and gets all insulting? Okay. How about 'there are many doctors on the internet who claim to be the answer to every illness. The odds that your one guy has somehow out-thought every other smart doctor to find time to fix the most intractable health issues at the rate of (10 000 / career time) is hard to believe. That he might be the one person who knows about exactly what the OP has as a condition, has a likelihood that is vanishingly small.'
I reckon the issues of health are harder than programming. No programmer knows everything, and those who claim to should be ignored. Therefore, any doctor claiming to have all the answers should at the very least be treated with huge suspicion.
Add in massive self-promotion and every alarm bell goes off. The guy may have some great stuff, but being presented as the sole Doctor for the New Millenium is going to get you attacked, and far more harshly than I have.
Where exactly did he do that? From what I can read he is simply providing a suggestion to a person who has been talking to doctors since he was 20.
It seemed I quite possibly have assumed that the tone in your comment was not intentional, but it looks like that wasn't the case. Quit being such an asshole.
What part of his claim was relevant to the OP's issue? Is a blanket claim of 10k healed useful? Is that out of 10k people with similar conditions to the OP or 100k drive-by vitamin injections and a new diet and a 10% success rate? How was the improvement measured? Do you care that the OP could go on some wild goose chase that isn't the best use of their resources?
Hi my father is a doctor and I sent him a link to this blog asking if he knew what might be wrong, here's his response:
He has classical chronic fatigue syndrome, on the same continuum as fibromyalgia and 'ME'. The best term is 'syndrome of central sensitisation'. "Gulf war syndrome, yuppie flu etc are all part of the same spectrum. It is akin to phantom limb pain.
The problem lies in the brain, in the area of the brain that processes incoming sensory information before it presents it to consciousness, which is where we all live. Our brains have the capacity to turn up sensation in the short term to help us respond appropriately to a threat: for example people report that in a road traffic accident everything becomes vivid, and time slows down. This normally turns down after the threat passes. If the threat is severe enough, the memory may keep coming back in flashbacks and nightmares, and the person suffers anxiety and panic attacks. This is post-traumatic stress disorder.
Some people develop the syndrome of central sensitisation after a major stress (I had a superfit tree surgeon, a felled tree landed on him but not a branch hurt him, but afterwards he developed severe generalised pain , couldn't sleep and was exhausted. He never worked again).
The more common group are people who have major childhood threats, such as early bereavement, parental violence, bullying , sexual abuse etc. It seems their brains become hard-wired in adolescence to be in a permanent state of this hyper-vigilence. All they need is a 'second hit' later in life, some emotional or physical problem, and the whole process is triggered: central sensitisation ensues as a permanent problem. It's like a radio with the volume turned up too loud: there's nothing wrong with the signal or the radio, but the noise it makes is intolerable.
In fact, sophisticated research tools have demonstrated chemical, electrical, blood flow changes and on functional MRI in sufferer's brains. In fact, there are physical changes to the brain in PTSD, with atrophy of the hippocampus.
Listening to these unfortunate people is fascinating, because it is clear their suffering is so great and real, and it gives us insight into the variety of experiences that human beings endure. A character in The Tempest remarked how beautiful the island was - it is so sweetly perfumed and the waves breaking on the shore make such sweet music - whereas his companion said ' It stinks like a fen.'
Treatment is far from satisfactory, especially for protracted severe cases.
You know jhollingworth, nobody has put forward your analysis here or suggested (hushed voice - hypochondria - which could be related to what you describe). But, and please don't mod me down here, this person must a) be either _extremely_ unfortunate in not finding one competent person to perform a correct diagnosis in 18 years, b) have an extremely rare ailment or an ailment that is not so rare but is habitually not picked up on or c) mentally deluded in some way. I am not a medical expert, I completely sympathise and hope for a successful outcome.
IANAD, but this sounds spot on. Nearly every problem he describes is explained by a slight adjustment to the pain threshold. His throat irritates him. His limbs hurt. He is tired. He can't focus. These are all things we all feel all the time. He feels them more.
It is consistent with responding to anti-depressants for a short time - before the initial semi-euphoric effects wear off, and then going off them once the trough after that begins. It is not uncommon for there to be a peak and a trough before stabilizing on an anti-depressant.
I wonder if OP has ever stuck with one anti-depressant for very long. They are very effective against this type of pain, whether the OP is depressed or not.
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.
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.
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).
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.
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.
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.
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.
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.
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.
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.
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!
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.
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!
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.
Malnutrition might be unlikely, but you mention the problems started as a vegetarian. This points to a strong possibility of Iron Defeciency, which can be fairly common (but of varying severity) especially on vegetarian diets. You'd be looking at anemia and dopamine\serotonin dysfunction from it which could match your fatigue complaints. I would see if Spirulina does anything for you: http://en.wikipedia.org/wiki/Spirulina_(dietary_supplement) it's a super source of iron and can correct anemia and there is research supporting several other health benefits.
Also use a nutrition calculator on a few average meals and check the label on your multivitamin to make sure you arent missing anything else essential like calcium (multivitamins dont necessarily contain everything, they would be gigantic if they did). Don't follow a food fad just ensure you are getting every nutrient and avoid all processed\prepared food.
Also, what is your height and weight? Do you have enough energy to exercise? You should let us know you aren't morbidly obese or anything like that. Also what time do you wake up and go to sleep?
One thing that helps narcoleptics is resetting the sleep schedule by staying up progressively later each night until the sleep schedule slowly wraps around over the period of a week. This can reset your body's circadian rythyms in a more permanent manner and help with fatigue. If you try using Melatonin instead to reset your cyrcadian rythyms, don't make the common mistake of taking it right before you go to sleep, it should be taken around 4 hours before planning to go to bed.
Vitamin D, SSRIs, and sleeping less helping all point to depression or anxiety and serotonin\dopamine dysfunction. Sleep deprivation basically has similar effects to an SSRI. Constant nasal congestion also points to this, because serotonin and the catelcholmines (dopamine and its endproducts norepinephrene and adrenaline) are the primary vasoconstrictors in the body. Vasoconstriction causes bronchodilation or opening of the airways which is why simple decongestants like Sudafed operate on norepinephrine. Spirulina could help with dopamine dysfunction due to its high content of L-tyrosine in addition to iron, for Serotonin you've probably heard of Omega3 fish oil which can help some.
Numbness indicates poor circulation and\or B vitamin deficiency. It will hopefully reside once you have enough energy to exercise and you determine you aren't anemic or malnourished.
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?)?
In conjunction with the symptoms and the background you give (18 years of this), it sounds a lot like an autoimmune disease. Which isn't saying much, I know, and I'm sorry for that.
I've got an autoimmune disease (Crohn's Disease) which has a lot of similar symptoms when left untreated. In fact, many autoimmune diseases have similar symptoms and and hard to track down–I too spent far too much money and time going from doctor to doctor and diagnosis to diagnosis until they discovered what I had.
Other peoples' suggestions to test your vitamin K and A levels (because of your reaction to more vit D) sounds like a very good step towards treating the symptoms. Please do, too, go out in the sun as much as possible, as this both aids in the processing of vit D and helps to coordinate your circadian rhythm.
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.
Sorry, at the moment I don't have time to read the 166 Comments here, but I did search for "cholesterol" and it came up negative. What is your cholesterol level? Did you know that proper brain functioning requires good cholesterol? Some of your symptoms sound like what I experienced when I was put on a statin drug (specifically Simvastatin). Against medical advice, I stopped taking it. (For me, it was the right thing to do; I'm watching someone else have their mind hollowed out by it starving the brain of cholesterol -- exactly what was in my own future!) This is all I can offer about this and I hope it provides a clue.
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...
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.
It occurs to me that were I in your situation, I would not have a very good idea about what to do with all the suggestions here on HN and on the blog. Perhaps you already have thought this through, but for me it would not be an insignificant problem. It might rather be the kind of problem that crowdsourcing would be more suited to help with than the problem you first came here with; i.e., you might want to now ask HN, how do I strategize from here. One of the problems you seem to have had is finding the right kind of doctor. A specialist in a given field is only useful if you happen to have an illness in that field. A generalist is unlikely to be able to identify a rare disease. How do you go about solving that problem. I don't know the answer, but perhaps someone here does. And perhaps someone here can tell you how to approach doctors with a strategy most likely to get them committed to solving the problem. My gut feeling, in any case, is that you ignore alternative medicine/radical lifestyle change suggestions. I would guess (and the fact that I must guess is probably telling) that alternative medicine is no more successful in scenarios where traditional medicine fails than in those where it succeeds. I wish you the best.
Are you of any particular racial/ethnic background? Some forms of some diseases are prevalent in only certain races/ethnicities; you might try to find a neurologist or immunologist that's the same race/ethnicity as you, or one that specializes in your race/ethnicity. Sometimes they will know about things that aren't even on the radar of people looking at the general population.
Also, there are some TV shows about "Mystery Diagnosis" stuff; maybe you can get yourself on one?
You don't mention your height and weight or BMI. You also don't mention exercise. Sleep apnea is common among people who are overweight as are many of the other symptoms you describe. Are you? Your symptoms started when you were 20 which is when many people start gaining weight.
You also seem to have had massive exposure to a wide array of chemicals. "...but after a year of treatment with every antibiotic imaginable...". Please remember that FDA approval does not make a substance safe and the FDA does not do drug interaction testing.
I'm assuming you're American. I moved to the USA in 2005 when I was 31. After a lifetime of perfect health my digestive system played havoc for a few years. Only after paying careful attention to my diet did I regain my physical well-being. Remember: Gatorade is not water, Corn fed beef is 10 times fattier than grass fed, 90% of bread contains a huge amount of sugar and has very little fiber etc. Take an interest in your diet and it will change your life for the better.
The American medical system can be the worst thing for your health. This is the only country where I've seen post-operative pain medication used for pain maintenance, teenage boys prescribed prozac due to exam stress and so on. It is designed to extract every last penny from you while keeping you healthy enough to perceive benefits and avoid lawsuits. Understand that you will always find a sympathetic ear and an easy prescription.
One last thing: Have you moved house since you were 20? Or did you stay in one place for a long time? Chemical exposure through air, water, diet or skin contact could be a cause. Radioactivity through radon exposure or another source is also a possibility you should consider.
You're right about the exercise. The rest is a bit FUD-ish. It's true that typical "American" foods are unhealthy, but this guy is more than unhealthy. Millions of people eat like crap and feel fine (until they die of hypertension at age 50).
Something else is wrong with the OP.
The rant about the health system is largely false. The American medical system has access to a lot of very expensive technology that may or may not help. The best we can do is try. Everyone wants you to get better; your family, your doctor, even your insurance company.
All I can say is that my experience with the system is not like yours at all. I have allergies. I didn't believe the first doctor when he told me that, so I went somewhere else. They did a blood test and prescribed a drug that was more effective than antihistamines. Then I started getting allergy shots. The total cost out of pocket for that? $20.
The system is not trying to screw you. The reality is that medicine is a very difficult field that we know very little about.
I've experienced living in 2 other countries and IMHO the intent is not as honorable here as you suggest. For example, maintenance drugs like Lipitor are extremely profitable and provide long term recurring revenue. There's a strong incentive (at best) for doctors to recommend a lifetime prescription over diet and exercise.
On a tangental note, you should see if you can find the podcast of "My Lobotomy". The history of Dr Freeman and the story of Howard Dully. It's a great lesson on why a healthy suspicion of the medical profession is a good thing. Here's a transcript: http://www.npr.org/templates/transcript/transcript.php?story...
I agree. For a situation this serious, you really should update your post with more thorough details. Also, I noticed earlier you eat a lot of processed meals (but the healthier ones). Really, if you haven't tried purely basic healthy eating and exercise and monitoring the results daily, not to be rude, but one has to wonder how hard you're trying.
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.
This is a bit out of topic and I hope that "savemylife" will find out more about his/her problems.
I find that a "crowdsourced diagnosis" approach may have a revolutionary impact on the way doctors and patients look at diseases. Recently I have lost a close family member because the doctor who first visited him overlooked some symptoms that could potentially lead to the discovery of his disease (a cancer). Time passed and the cancer developed to a stage that was impossible to cure.
Following this experience, I've started playing with the idea of a world-wide user generated symptoms database, managed and moderated by real doctors and experts. The main issue with such database would be the enormous amount of "false positive fright" triggered by casual users just checking out basic symptoms (for instance, a sudden high fever can be a symptom of a cancer initiated infection http://www.ncbi.nlm.nih.gov/pubmed/16257792, but can also be a symptom of many other less life threatening diseases).
I'm not a doctor so I'm not aware if something similar already exist - probably it does, on a country specific basis maybe? I know for sure that some doctors use Google regularly to double check their diagnoses. In most European countries, the majority of initial diagnoses are done by General Practitioners, who are doctors assigned to a patient by the national healthcare system. These doctors actually redirect patients to specialists or to hospitals for specific analysis based on - often very quick - assessments of the patient's symptoms.
I'm not sure how the healthcare system works in other countries, but I believe that there is always some kind of initial medical routing based on symptoms.
I wonder if the precision of this initial assessment could be improved through this database and some statistical algorithms? Any doctor, biologist (and of course, regular HNers) care to share his/her catch on this idea?
This won't cure the desease, however, in the mean time this might help you get work done:
1) Never stop desiring the things you want. (re evaluate how you may reach that desires but never stop desiring important things). A burning desire will pull through to accomplish much more than you can do with apathy. Read http://books.google.com/books?id=c86H36mgiM4C&lpg=PP1... if you have the strength/time
3) And finally the Pomodoro Technique http://www.pomodorotechnique.com This has hemmingsways hack built in. If done right (read the PDF) it is amazing.
- Is there any history of learning difficulties in your immediate family?
- Were there any medical problems while your mother was pregnant with you?
- Was the birth process unusual or prolonged in any way? E.g. CS, Forceps, etc.
- Were you born early or late for term (more than 2 weeks early or more than 10 days late)?
- Did you weigh below 5lbs (pounds)?
- Did you have any difficulty feeding in the first weeks of life, or in keeping food down?
- Were you extremely demanding in the first 6 months of life?
- Did you miss out the 'motor stage' of crawling on your tummy and creeping on hands and knees?
- Were you late at learning to walk (16 months or later would be considered late)?
- Were you late at learning to talk (2-3 word phrases at 18 months or later would be considered late)?
- Did you have difficulty in learning to dress yourself, for example, do up buttons or tie shoelaces beyond the age of 6-7 years?
- Do you suffer from allergies?
- Have you had an adverse reaction to any vaccinations?
- Did you suck your thumb beyond the age of 5 years?
- Did you continue to wet the bed, albeit occasionally, above the age of 5 years?
- Do you suffer from travel sickness?
- Do you find it very difficult to learn to tell the time from a traditional (as opposed to digital) clock?
- Did you have an unusual degree of difficulty learning to ride a bicycle?
- Did you suffer from frequent ear, nose, throat or chest infections at any time in development?
- In the first 3 years of life, did you suffer from any illnesses involving extremely high temperatures, delirium or convulsion?
- Did you have difficulty catching a ball, doing forward rolls/somersaults and stand out as 'awkward' in PE classes?
- Did you have difficulty sitting still for even a short period of time?
- If there is a sudden unexpected noise, do you ever over-react?
- Did you have reading difficulties?
- Did you have writing difficulties?
- Did you have copying difficulties?
From their website:
"Our goal is to enable people to share information that can improve the lives of patients diagnosed with life-changing diseases. To make this happen, we've created a platform for collecting and sharing real world, outcome-based patient data (patientslikeme.com) and are establishing data-sharing partnerships with doctors, pharmaceutical and medical device companies, research organizations, and non-profits."
Of the symptoms you've listed, I've had these problems:
severe fatigue
non-refreshing sleep
memory loss, inability to concentrate or focus
muscle pain
dizziness
nasal congestion, always having to clear my throat
heat intolerance
I am still working on resolving some of these, but the biggest 2 culprits were:
1. Chronic dehydration. Even though I thought I was drinking plenty of water (probably 64 ounces a day), it turned out it wasn't enough. Now I drink at least a gallon of water a day - drinks containing caffeine don't count, and most days I drink 1.5 gallons or so. This helped almost all symptoms to some degree.
2. Food allergies, corn syrup specifically. I can eat it and not really notice any effects immediately, I assume that's because it's been in my system since a very early age; but cutting out all food and drinks that contain corn syrup has resulted in significant improvements with regards to fatigue, sleep quality, muscle spasms, memory / focus and nasal symptoms. Regular corn on the cob doesn't seem to have nearly the same effects on me as corn syrup does. I don't know if it's a glycemic index thing or what. What I know is that it's easy to replicate the problem, I can go have a soda or a bunch of white bread that uses corn syrup and I get so exhausted I feel like I'm going to pass out. But if I try Mexican Coke, for example, I feel fine.
I'm not a doctor and have never played one on TV, but my personal guess is that your problems may be diet related. You could try a divide and conquer diet to see if you feel any improvements. Worst case scenario is that it forces you to have a healthier diet while you're figuring out the real cause of your problems.
I would also recommend seeing an actual allergist instead of your regular doctor. I started allergy treatments with my primary care physician and he loaded me up with a bunch of drugs that didn't do me any good. I went to an allergist and have a plan that seems to be working in the long term war against allergies.
Good luck to you, I hope you find out what the problem is (and come back to tell us about it).
I am not a doctor. However: My friend was suffering some similar symptoms to what you're describing and after years of tests and trials, one doctor decided to give her some adderall and she's be glowing ever since.
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.
That's one autoimmune disease caused by one specific protein found in wheat. Suppose you have a similar problem. You could fix it by cutting out the offending food.
Wheat would be a good thing to start with. My wife cut it out (along with sugar) and found that her lifelong GERD went away. That's not in any standard medical advice.
I've never seen someone with osteomalacia before, so caveat lector: I would keep osteomalacia on my differential. Some of your symptoms - particularly your musculoskeletal discomfort and disability - are suggestive. Now, osteomalacia would not be the unifying diagnosis - it would be a consequence of low vitamin D. Your hypovitaminosis D could be the result of your diet (vegetarian) and lack of sun exposure, though there is, of course, another differential for low vitamin D.
At the end of the day, though, it's really hard to try to make a diagnosis based on a blog post. A doctor should see you walk into the room; hear your voice; be able to ask follow-up questions; carry on a relatively fast-paced conversation, so he may hear things quickly enough that the dots connect themselves. A doctor should see your lab values, and know precisely which tests you got and what the results were. There is a lot of diagnostic value embedded in the patient encounter that just isn't conveyed over the web. Now, your approach may work - perhaps this type of story is virtually diagnostic in some field - but it comes off as being pretty broad. Without knowing why your other physicians did what they did, knowing what they did actually makes me more confused, not less. Seeing your past medical history, as written by a doctor, would be highly informative.
I just wanted to tell you that I submitted your case to a medical practice of 20 doctors. I know all of these doctors very well and they will do everything they can do to diagnose your issue. While it is not exactly their department, that being neurosurgery and orthopedic surgery, they promised me that they would pass on the case to their colleagues who are more suited for it. I sincerely hope that we can find a solution to your problems so that you can get your life back on track.
In my entirely non-medical opinion, it sounds like psychological effects could be responsible for a large part of why you are in such a bad way. Even if they are not the root cause, they could be severely clouding your judgement of things by forming negative feedback and biases. I know you've had too many responses to always reply to the threads, but the impression I was getting is that everything that should be good for you makes you feel worse. Something there points to a non-physiological component. I'm not saying it's all in your head, but a large part could be, stopping you from solving the other part.
With chronic pain/depression and those kinds of things it can be very easy to give up quickly or think that nothing can help. You have become conditioned for failure. It sounded like you had given a limited chance to normally healthy things like sunlight, exercise, and good diet. As others mentioned - 15 minutes may not be enough if you are already having issues. Packaged foods are not healthy. Try to dedicate a month to genuinely healthy living, regardless of if you feel it's working. No crazy diets or colonic irrigations, but eat real foods that your ancestors would have eaten. Drink water not caffeine/alcohol/sugar. Do both regular and vigorous exercise. Socialise, in real life. Get all the things that we were "designed" for, and none that we weren't. Stick it at. See if it's still not working after a dedicated, longer term trial. It will be difficult - it's hard enough for people with no problems!
Additionally - have you tried going deliberately sleep-deprived? Or fasting? Can you go 2-3 days without sleep, sleep well, and still feel tired?
There is a way to test if it's an autoimmune disease which involves taking medication for a week that depresses the immune system temporarily. If the symptoms subside then you know it's an autoimmune disease and you can dig deeper from there. You'll need to talk to a neurologist to get that done. My advice is to find a good neurologist and stay with him/her for a long while rather than switching doctors too often.
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.
It is not that common, but is is not that rare that the doctors shouldn't have picked it up. The thing is, although in most cases the disease is in most cases expressed in lung problems, it can actually affect all organs.
My dad had similar issues and slowly progressing over about a 18 year span. His thyroid grew large and his health issues worse and worse. (He noticed while looking at a family picture that was 12 years old at the time, where which his adam's apple was small and became large).
It was a slow process for that to happen, but one thing he found to help with his chronic fatigue was to make sure he always had the right amount of iodine in his system, which is due to his thyroid problem. To this day he puts iodine directly on to his arm or leg and makes sure he gets the correct amount, otherwise he is sick. He does that 3-4 times a day. As with your problem, doctors were completely unable to help them and most seemed to not take great care with trying to understand what is really happening and instead focusing on symptoms.
You should go to a dedicated specialist in Lyme, not just a normal doctor. Lyme has coninfections with Bartonella and other bugs. It also occupies multiple niches in the body and has to be hit with many antibiotics.
This may have been mentioned, but don't assume that you can attribute your maladies to one diagnosis: "x" disease. It's quite probable that it is the result of a multitude of things. The same can be said about the remedies.
It's very easy to relate to your problems, but who the heck can't to some degree. This is why people should shy away from playing doctor (curious youngsters excused), because there are a lot of fallacious pitfalls that people are not aware of most often.
I, too, have some of the symptoms (which may or may not be ADHD) and some kind of chronic, constant allergic reaction. It sucks like hell, but I don't let my frustration cloud my resolve nor my wish to attribute it to one thing to blame everything on and to find, because I may just be punching at apparitions.
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?
I have nothing to suggest as I am in a similar situation and have been pondering making a similar type of request to the community for a long time. I have been repeatedly frustrated with my attempts to get to the bottom of it (ie rejected by the Mayo Clinic, Johns Hopkins, 8 million doctors, 8 million lab tests). I have reached wits end more times then I care to think about. The most debilitating thing of all is that I lost the support of just about everyone I know because no one believes me when I say that I have short term memory problems and my stomach aches 100% of the time. It truly is a nightmare and something that I fear sharing with anyone at this point.
In short, if you do figure something out, please let me know. Thank you and good luck.
I fought back the urge to create a throwaway account named gregory house and suggest it was lymphoma. That's the extent of my medical knowledge. If you have problems with medical bills however I would be happy to donate to a paypal account to help out.
In truth, there could be many things that could be causing these symptoms, or multiple things.
Also I am not a Doctor.
Edit: Also I feel I can relate a little bit, as I was hit by Acute Pancreatitis recently, and still experimenting to see what the cause is. Of course the disturbing thing is there is no clear answer, and there may never be. Wish you the best of luck.
I'd suggest food allergies / intolerances. Unfortunately the tests for those are very unreliable. The thing to do is try cutting a few things out and see what happens. I'd start with dairy or maybe wheat or both. Good luck.
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.
That you received partial or temporary benefit makes me wonder if one of those conditions was the culprit and you just needed to attack it differently.
Alternately, perhaps the benefit was from suggestion and your condition is psychosomatic. This doesn't mean it's not real or not out of your control, it means that you have something in the wiring of your brain that is causing your body to wig out.
It sounds like what you need to do is to engage with a team of experts and stick with them. You need someone or multiple someones tracking all of your various treatments and responses long-term.
I'm immediately drawn to Candidiasis / Intestinal dysbiosis as a possibility.
Candida can play havoc on your system if it overthrows your intestinal tract. And most (if not all) of your symptoms are that of Candidiasis.
While it's not the most scientific, you can try the "spit test". First thing when you wake up, spit in a fresh glass of water. Wait 10-20 minutes. If your spit falls "stringy" to the bottom you may have a Candida overgrowth. In which case, get some pro-biotics, preferably those which withstand stomach acid and get more accurate testing from your doctor.
Its great that you've decided that you want out of this. In addition to the medical processes that the wonderful folks here are offering help with, you might benefit from just getting your mind off your condition.
Since brain processing is too tiring, you can sit by yourself in a distraction free quiet place (ex: face a wall) and count your breath for five minutes at a stretch. Just count your breath 1,2,3,..,10 and back to 1. No need to think about anything at all for those five minutes. If you lose your count, start again at one.
My suggestion to you is to find out if there is a genetic cause.
Reading your symptoms, my hunch (nothing more) is, that there might be something wrong with your sleep control circuitry. I suppose narcolepsy has been ruled out, but you might still try a drug called Provigil.
To be more concrete, wait until whole genome sequencing has come down in price to where you can afford it (give it a year or two), and then have that done.
There is a possibility that you have a very rare mutation causing your symptoms.
Granted it's a very long shot, but the thing that came to my mind.
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.
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.
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?
SaveMyLife, relating to the Psychotherapy, have you ever be diagnosed as having OCD or an Anxiety Disorder. These are much different than depression. I am in no way minimizing your physical issues (and the positive Lymes test seems alarmning, and I would certainly try to get a DNA confirmation on that and focus on that), however OCD/anxiety is a very lethal combination and has been known to manifest itself in physical ailments.
I suggest really really looking into Lyme Disease. I've had a friend who suffered from basically all the same symptoms and that is what it came down to. The fact that you tested positive once says a lot. It is a really horrible disease that can sometimes lead to other chronic illnesses. The fatigue is a ringer for it.
From what I've heard, Lyme Disease tests frequently come back negative even with you have it. It has a lot of different manifestations and potential symptoms, and the organisms that cause it can go dormant which makes them highly resistant to antibiotics, so having taken a course of antibiotics is no guarantee that it's been cured if that's what you had.
And I believe most doctors have an extremely hard time diagnosing it.
If someone mentioned it already, sorry - missed it. Another HN-er had some strange health problems for a long time. Here's the post: http://news.ycombinator.com/item?id=868325 He wrote that in the end he found a diagnostician "Dr. House without the 'tude'" :) who at least finally diagnosed correctly what was really wrong. You might want to contact him.
I'd try to test if your muscles are actually fatigued, or if your brain just thinks that they are.
Also I'd try to test my self in sleep lab to establish if there are any abnormalities in your patterns of sleep.
If muscles are ok, and sleep is ok then I'd try to verify if neurotransmitters in the brain are normal. After that I'd try to do brain biopsy to see if neurons are looking normal.
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.
Take a cruise for a week. No gadgets allowed.
Relax your mind, sunbath by the pool, eat plenty, and have fun, lots of fun.
All of this will help you discard any mental fatigue due to coding for long periods of time. Plus, it will help determine if there is any environmental cause.
I am no doctor, but sometimes laughter is the best medicine.
I've heard some second and third hand accounts of environmental problems such as asbestos, lead paint, mold, etc causing mysterious long running health problems for people so I was thinking the same thing. Not sure a week vacation is enough time to test it out though. If he's been in the same place for the duration of this problem it probably wouldn't hurt to get it tested if all other options are not providing results. Who knows? When I was younger I had lyme disease for almost a year and after 8 months of nearly weekly doctor appointments and endless tests my parents had to ask the doctors to test for it before the doctors figured it out. Since then I think it's never safe to rule out anything. Without more details it's hard to know if that type of problem would be applicable here but it's definitely something worth considering.
Have you had a screening for diabetes? Your mental troubles might be attributed to the way diabetes alters the body's metabolism. Numbness of the extremities, dexterity, muscle loss/pain, and fatigue might all be attributed to affects on the circulatory system.
This is absolutely not meant in slight. You should start making a list of medical hotshots - the kind of doctors that that the eponymous character in House MD is based on - and go to them.
I truly wish you the best of luck. Keep us posted.
I just want to say: this guy is suffering and the best a specialist can do is an appointment 6 months out, and pundits say we have the best healthcare system in the world?
I do not see meditation on your list of things you have tried.
I've found that meditation helps one to tolerate pain and discomfort better than anything else. Being specific, the following items on your list may be dramatically improved through meditation:
* fatigue
* non-refreshing sleep
* memory loss, inability to concentrate or focus
* muscle pain
* confusion
* loss of dexterity
* nasal congestion, always having to clear my throat
* heat intolerance- I absolutely cannot stand the heat- fatigue is magnified by it
Most of your problems relate to either unpleasant sensations, lack of focus, or exhaustion. I would submit that all of these problems might be addressed through Vipassana meditation. http://en.wikipedia.org/wiki/Vipassan%C4%81 Vipassana is a technique through which you learn to observe, and not react to, sensation - pleasant and unpleasant. To put it simply: by cultivating equanimity, it can make pain not 'hurt.' This happens during a single hour-long meditation session, as your body aches, and with regular practice it continues through the day, and throughout your life.
It is not magic, and it needn't be religious. I am not a religious person, and it works for me. It is exercise for your brain. See http://en.wikipedia.org/wiki/Pragmatic_Buddhism You can train your brain to not react to negative sensations. I honestly believe this technique can help you deal with your symptoms and lead a happy, productive life.
I learned from this group: http://www.dhamma.org/ but there are many groups, and the technique itself is simple - but I suggest you find someone to teach you. Get a book, too. The man behind that site, Goenka, http://en.wikipedia.org/wiki/S._N._Goenka had terrible migraines, and searched for a technique to address his chronic pain until he found Vipassana. There is a high barrier of entry to Goenka's courses however, as they are 10 days (of silence) long. There are also restrictions on health conditions to enter a course, because they are very trying for healthy people, so you would have to exclude much of the information you have shared with us to enter. If I were you, I might do just that.
A lot of people have mentioned this already, and I see that you're aware, but try to take another look at Lyme disease as a possible candidate. There's a huge controversy over it that I'm sure you're aware of.
If you haven't seen the movie "Under Our Skin", go see it now. It's all about the insanity surrounding Lyme disease, and basically the conclusion is that you need to find yourself a real expert on Lyme disease, and unfortunately they're not easy to find.
I was on antibiotics for about 15 months before I had what you could call a dramatic improvement for some symptoms. It can take longer. Spirochetes can form cysts and biofilms, etc. Co-infections can complicate things. Different strains can react to meds differently, etc.
I'm still on meds more than two years after diagnosis. In any case, it can take years to get better in some cases. And some symptoms may just be from permanent damage or from the (theorized) auto-immune response to Lyme. Some of my symptoms (endocarditis, myocarditis, brain lesions, etc.) are definitely permanent. But I'm thankful I didn't give up on antibiotics because of the "experts."
One quick suggestion, ask your doctor about Provigil. It's sort of a wonder drug for people with ADHD, Sleep Apnea, Narcolepsy, and a few other issues.
Test for Lyme Disease often goes wrong. Lyme Disease is very difficult to "catch" so the best thing is a test from many different parts of the body to different labs and if you suspect it, then test again a few times.
If you came out positive could mean you have a strain in you. After 20 years there is a possibility it is quite a strong strain. Thought it is a bit strange it should have crippled your nervous system by now.
This rings a few bells. In 1998 I became ill with prostatitis which followed with serious downturn. Eventually I was diagnosed with ReA (reactive arthritis). This is thought to be incurable AI disease. I did not fancy the treatments to 'alleviate' the symptoms, nor the incurable label. I started a quest to find the solution to this epidemic which over took almost every part of my body, eyes, joints, (too much to list) etc etc. I started in the local hospital library and after a month ran out of books to read, then went to the British Library and started there. The resources in that building are just what I needed. I tried every alternative treatment on the market, including every cure and supplement with only worsening or without resolution. Given ReA is so rare I was foced to study many other illnesses to try to get a grasp on nature of the problem. I eventually started experimenting with antibiotics (abx) but not in normal 2 week courses but long prolonged courses, treating like one would for a chronic infection like TB. I must have been through 10-15 different abx, most with only side effects to talk about, but one Cipro did something, despite being totally hard to take, (dieoff) after 3 weeks at 1.5g per day I had to stop but did notice a slight change; after a few months break I wanted to try again for a longer duration (6 weeks) since this was the recommended course for prostatitis. I did and 2 weeks after that I remember the day when it all lifted in a 'woosh', I was not home yet but the rampant infection which was raging had been put down. Then I unfortunalty had a hickup, colon went south and I thought for 6 months it was side effects from the abx, yet it was actually a campylobacter infection which I know now is a comon side effect of abx. despite tests by local drs and labs they did not find this, I had to go to a private lab who found it and recommeded Cipro. It cured that in a few weeks but that secondary infection caused much damage and which has been yet another battle (tbc). The pockets of infection (back, left eye, hard to get places etc.) were still not 100% and a lot of courses of Biaxin did wonders to get it out of these places. Then I was limping along with colon problems for years, the cure to this was high doses of Anti fungals (AF), lamisil 250mg per day / 3 months, and nystatin or funglin (oral amp. b.), this was very effective for about the first 3 months, but i carried on for 18 months with these, but never got much more improvement, than after the first 3 months lift. Then I found that I was totally allergic to Gluten, then after another 6 months Dairy, and then Corn / Maize. After eliminating these the colon started to improve but is still not 100% and I'm still battling to get it 100%. B vitamins seem to be the latest aid. During this entire time I have done mostly everything without the help of Doctors who have had their hands tied and been unable to RX the treatments such as the abx etc. I have bought many on the net and had a friendly pharmacist who sold me what I asked for. There are good DRs out there though, 1/100 IMO. Good luck you will need it!
Edit: I do not have the 'so-called' incurable ReA any more! I do question many so-called AI diagnoses and believe many are infections. I'm not 100% but much better, I have good and bad days still. The body is an amazing machine and given the resources it will repair even from the most devastating damage.
http://en.wikipedia.org/wiki/Pernicious_anemia
I had a friend go through something very similar a few years ago - almost exact same symptoms, steady relentless degeneration, multiple ineffectual doctors and most of the incorrect diagnoses you list above.
Finally one doctor figured it out - Pernicious Anemia. It prevents stomach from absorbing much needed Vitamin B12, which was the cause of most of the degenerative, incapacitating symptoms.
She started taking daily B12 shots to compensate, since there was no other way to get B12 into one's body. That completely solved the problem, cured the symptoms, within a few weeks she was back to her normal 110% self.
The doctor that finally figured it out noticed neuropathy in her extremeties - muted or complete lack of feeling in her hands and feet, and that clued her into the possibility of PA.