4 ms·

It's also important to find the right doctor, and this can be very hard. I had always been extremely trusting and never cared about anything - when it came to h

It's also important to find the right doctor, and this can be very hard. I had always been extremely trusting and never cared about anything - when it came to health, go to the doctor, do what they tell you to the letter, no need to think about anything I have no clue about. Until the doctor - a professor even - gave me advice in a strange crisis that made no sense. He wasn't wrong, he gave exactly the advice that is current "state of the art" for the condition he diagnosed. The problem was, where did that condition come from? The doc didn't care, his job was done. He had a diagnosis and he gave the recommended treatment suggestion (which consists of working on the symptoms, and very badly so, because they don't understand that condition even though it's quite common). Following his treatment I got a huge candida outbreak (and I don't have chemo or AIDS) the symptoms of which he completely ignored. I later got nystatin and then even got diflucan prescribed for three weeks (it wasn't a systemic infection and yet that stuff helped greatly), both those drugs with huge positive effect, but candida isn't a cause but itself a symptom. I dug deeper and found the root cause. Then I went and found doctors who actually knew something about it. I got treated at a university clinic by a researcher doc with chelators against chronic mercury poisoning. 5 years later: miracles happened. The last one of many was that the endocrinologist put me back on the table to repeat his ultrasound of my right thyroid, which for over twenty years had been double-size and with a 4mm cold nodule - because the nodule was gone, and the thyroid was almost back to normal size. "I'm amazed" was all he could say several times. During chelation I had had "tissue pain" (can't describe it) for a few weeks right around the right thyroid. There is a lot more, like the psoriasis and the tinnitus and many of other long-term problems that just disappeared. So I'm glad that I ignored the doctor(s), very, very few would find a chronic heavy metal poisoning. Ignoring a doctors opinion and going out on my own was the hardest thing I ever did in my life. Internet forums, while indeed and truly often horrible, did help me find the problem. You have to filter out over 90%, but one doesn't even have to be an expert to detect the BS. The rest can be valuable when your doctor doesn't find anything. It's not like doctors couldn't find it - it's just that they don't have the time. The waiting room is full, how much time is it worth spending on the problems of any given patient? Especially "functional" problems where you can't actually see anything even with biomedical imaging. - Completely unrelated to both the previous story and inside that story to the problem I had, I started learning about medical topics, actually out of boredom initially and then got drawn into it. Hundreds of lecture hours and courses later I now understand the basics of anatomy, physiology, had to learn lots of chemistry, org. chem., biochemistry, lots of statistics (never played any significant role in my CS study or in my life), and neuroscience, over 70 courses in total half of which were medical topics. It feels GOOD to know those things, I recommend it to anyone who has some time left for learning. Neuroscience especially should be a must for CS/IT folks, try https://www.mcb80x.org/ https://www.mcb80x.org/ for a start and Medical Neuroscience (https://www.coursera.org/learn/medical-neuroscience https://www.coursera.org/learn/medical-neuroscience) as a follow-up, one of the best courses out there mostly because the professor teaching it is wonderful. Don't just learn functional programming with Haskell or Scala, learn brain! :)

manmal 10y ago
I'm very intrigued about your mercury poisoning - how did they find out? I read that hair analysis is not so accurate, but everybody makes different claims.
- Noseshine 10y ago
  The diagnosis is mostly done by indirect means and by testing if the antidote does anything. Chronic mercury poisoning is very hard to diagnose by testing because there is no way to measure how much mercury is stored in your body except by cutting off pieces from various organs and sending them to a lab - obviously not feasible. There is the chelation challenge method, for example the "DMPS test", where you are given a dose of the chelator and then they check urine for heavy metals. The problem is most chelators only work in extracellular space. There are studies showing positive results of such a test do correlate well with heavy metal intoxication. Here is a summary paper from a lab - sorry, German: http://www.labor-bayer.de/publikationen/11_DrBayer-DMPS-2008.pdf http://www.labor-bayer.de/publikationen/11_DrBayer-DMPS-2008... You can also look at indirect indicators, for example my WBC count was quite low (and no clear reason presented itself) and a few other values were a bit wacky too. Anyway, as for myself I was "lucky", I had elevated mercury levels in urine and in blood. I had hair tested too and mercury was very high. Since it's unlikely mercury in hair came from an outside source that directly (i.e. not through your body) contaminated the hair sample it can give a good indication that the person was exposed to mercury - it doesn't tell you anything about how much is in the body. After all, if it's in the hair it's a good sign because it's being excreted. Also, different labs may very well give you different results when you send them hair taken from the same person at the same point in time - this has been tested. What works better than trying to interpret an individual lab test is a trend: Take the same test each year - using the same lab of course - and look at the change. And always in the larger context, any single value of anything is rarely meaningful just by itself. So after an initial diagnosis what completes a diagnosis is to start a probationary treatment with the appropriate chelator and see what happens. That's not unusual, a lot of treatments prescribed by your doctor are of that kind. Assume a diagnosis and test it by treating for the diagnosis. This all goes into the much larger issue that we are far from knowing the effects of levels of chemicals a) individually at low doses that don't show an immediate effect b) cocktails of several substances at low doses. We know quite a bit about effects of substances on a molecular and sometimes on a cellular level, but that doesn't translate well to knowing what happens long-term and at doses that don't have a clear immediate effect in real life. I can't find the reference any more, but a few years ago I read a study of LD50 values (lethal dose - it is the amount of the substance required to kill 50% of the test population, rats for example). They found that when you combine lead and mercury the lethality if about a thousand times higher than each one by itself. So of what use are individual legal limits? Their main purpose isn't medical but administrative, at what point is the cutoff point for effort vs. effect, e.g. money spend on getting the last bit of lead out of pipes and houses vs. beneficial effect. How long did it take for lead to be taken seriously? That was a lone fight for a long time, today consensus is - and I quote a professor of public health from a course on water treatment I took who presented the studies - that there is no known safe lower limit. Doesn't mean we can get to zero everywhere, so we do have an official limit for good reasons. I always cringe when people use those limits as arguments in a health debate though as if they were some sort of objective proof that there is no problem and anyone expressing concern is a tinfoil hat person.

manmal 10y ago

I'm very intrigued about your mercury poisoning - how did they find out? I read that hair analysis is not so accurate, but everybody makes different claims.

Noseshine 10y ago
The diagnosis is mostly done by indirect means and by testing if the antidote does anything. Chronic mercury poisoning is very hard to diagnose by testing because there is no way to measure how much mercury is stored in your body except by cutting off pieces from various organs and sending them to a lab - obviously not feasible. There is the chelation challenge method, for example the "DMPS test", where you are given a dose of the chelator and then they check urine for heavy metals. The problem is most chelators only work in extracellular space. There are studies showing positive results of such a test do correlate well with heavy metal intoxication. Here is a summary paper from a lab - sorry, German: http://www.labor-bayer.de/publikationen/11_DrBayer-DMPS-2008.pdf http://www.labor-bayer.de/publikationen/11_DrBayer-DMPS-2008... You can also look at indirect indicators, for example my WBC count was quite low (and no clear reason presented itself) and a few other values were a bit wacky too. Anyway, as for myself I was "lucky", I had elevated mercury levels in urine and in blood. I had hair tested too and mercury was very high. Since it's unlikely mercury in hair came from an outside source that directly (i.e. not through your body) contaminated the hair sample it can give a good indication that the person was exposed to mercury - it doesn't tell you anything about how much is in the body. After all, if it's in the hair it's a good sign because it's being excreted. Also, different labs may very well give you different results when you send them hair taken from the same person at the same point in time - this has been tested. What works better than trying to interpret an individual lab test is a trend: Take the same test each year - using the same lab of course - and look at the change. And always in the larger context, any single value of anything is rarely meaningful just by itself. So after an initial diagnosis what completes a diagnosis is to start a probationary treatment with the appropriate chelator and see what happens. That's not unusual, a lot of treatments prescribed by your doctor are of that kind. Assume a diagnosis and test it by treating for the diagnosis. This all goes into the much larger issue that we are far from knowing the effects of levels of chemicals a) individually at low doses that don't show an immediate effect b) cocktails of several substances at low doses. We know quite a bit about effects of substances on a molecular and sometimes on a cellular level, but that doesn't translate well to knowing what happens long-term and at doses that don't have a clear immediate effect in real life. I can't find the reference any more, but a few years ago I read a study of LD50 values (lethal dose - it is the amount of the substance required to kill 50% of the test population, rats for example). They found that when you combine lead and mercury the lethality if about a thousand times higher than each one by itself. So of what use are individual legal limits? Their main purpose isn't medical but administrative, at what point is the cutoff point for effort vs. effect, e.g. money spend on getting the last bit of lead out of pipes and houses vs. beneficial effect. How long did it take for lead to be taken seriously? That was a lone fight for a long time, today consensus is - and I quote a professor of public health from a course on water treatment I took who presented the studies - that there is no known safe lower limit. Doesn't mean we can get to zero everywhere, so we do have an official limit for good reasons. I always cringe when people use those limits as arguments in a health debate though as if they were some sort of objective proof that there is no problem and anyone expressing concern is a tinfoil hat person.