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One problem is that your doctor has no incentive to treat rare diseases. If they can cure 99.9% of people, then they are king. The .1% of people with a rare disease will require extensive testing that costs a lot of time and money, and will only make your doc look bad on various performance evaluation metrics.



It's not just rare diseases. Anything that cannot easily be diagnosed. They end up treating the symptoms because finding what the cause is is nigh impossible for a real-world doctor with a full waiting room and a limited budget.

If someone thinks I'm just rambling, I took medical courses worth well over a thousand lecture hours (incl. biology, bio.chem and other stuff needed as a basis), plus I myself was one such patient and I spent years on it - together with a specialist I finally found, a researcher at a university clinic.

Anything that has an underlying cause that is not itself an obvious disease is part of that category. For example, "simple stuff" like psoriasis (mine went away after treating the cause), acid reflux (usually no concrete cause is found, only guesses - weight, food, only in rare cases where there is an anatomical problem as the immediately visible cause is one determined), lots of other "fuzzy" things that are not (immediately) disabling conditions.

I'm an example. I was told by a professor of gastroenterology that I would have to take PPIs forever. His diagnosis was completely in line with all recommendations given my problems - but it felt completely wrong on all levels. I did my own research and found the true cause, looked for a specialist, got it confirmed, treated - and I proved that professor and a few other doctors wrong many times over. I have no hard feelings at all though, I'd still go back to that professor if I needed a professional opinion. I just interpret it very different than before though and don't take as the ultimate answer. I'm actually somewhat satisfied with modern medicine despite the fact that it let me down big time had I not spent an extraordinary amount of effort myself - after all, when you do invest that effort, never in the history of mankind have their been so many options.


You say that you had to spend a great amount of effort yourself.

Does that mean you somehow got access to various diagnostic tests (blood tests, CT/MRI scans, etc.)?

I'm ok with modern medicine as far as treatment goes. However, the fact that diagnostics are not commercially available is somewhat maddening. I understand that it's not for everyone, but that doesn't change my point.


> Does that mean you somehow got access to various diagnostic tests (blood tests, CT/MRI scans, etc.)?

Since my problem was chemical and I didn't have a concrete region but non-localized issues I didn't need the extremes of medical imaging (CT/MRI). Quite a bit of ultrasound was done, abdomen but also of the thyroid. An additional functional re-check of an enlarged thyroid with a nodule previously examined two decades prior using a radioactive tracer was not strictly necessary, but oh well. By the way, the nodule in the thyroid as well as the enlargement - both stable for decades - completely evaporated and disappeared, respectively, to the great amazement of the endocrinologist, once I treated the underlying cause of all my problems. Which was long-term- low-dose mercury poisoning. Lots of blood and urine tests, especially after I determined that it must be heavy metal poisoning, to check progress of chelation therapy after the initial confirmation.

> the fact that diagnostics are not commercially available

I had no issues getting any test or imaging that seemed reasonable, immediately. Country: Germany.


Good to hear that you found the solution!

What was the most decisive test that helped you come to the conclusion that it was mercury poisoning?

Also, curious: was this poisoning caused by dental amalgam? And have you read this, [1], and would you agree with the conclusions?

[1] https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3010024/


After receiving PPIs I had acid reflux like never before in my life, and my abdomen was incredibly bloated all the time too. The professor gastroenterologist I was seeing put it all down to "psyche" (he was very nice about it, and I think I said it, I would still go there, just be more critical). After some hesitation and a lot of suffering - as soon as I fell asleep I had reflux - and actually coming back to the diagnosis for a second time because I did not believe it myself, I self-diagnosed the main issue at that point as a huge outbreak of candida. The problem was that it was pretty much only "non-standard" and "volunteer" websites that had the information so I did not trust it. Anyway, it was confirmed fist by the immediate huge success of using an over-the-counter antifungal followed by seeing a general practitioner who confirmed it right away (one look into my mouth was enough). Later I was even given a systemic antifungal (fluconazole based), again with great success.

The problem: Everything I read indicated that a fungal infection never is a cause it is itself a symptom (I even considered if I had AIDS), and only the extreme edge of my issues had been taken care of anyway. After reading up on possible causes the only thing that was left - and I had to go with Sherlock Holmes, after you eliminate everything what remains, however implausible, must be the truth - was mercury. I had tests of blood/urine (kind of the same, since urine is a mirror of what's in the serum) as well as hair and had clearly elevated levels of mercury. Looked for and found a specialist for environmental medicine, researcher at a university clinic, started chelation treatment - overwhelming success with a few medical miracles along the way, like those disappearing thyroid nodule and enlargement after decades of existence.

Yes it was due to dental amalgam. It turned out my jaw bone was broken too: When a doctor tried to make an injection into buccal mucosa he ended up deep inside my jaw bone (the doctor had applied next to no pressure, it was just meant to go into the mucosa after all) in several places. All of those places were the roots of teeth that had had amalgam fillings, what a coincidence /s After a year of DMPS (chelator) injected into those places the bone healed itself, the needle stopped going into the bone. Note: X-ray had shown nothing at all. I learned that in order to show bone issues in x-ray you must have already lost most of it.

I have not looked at [1] because quite honestly, I don't care. I fixed my problem, and I've become quite a cynic. It is completely useless to start any discussion. Especially about health issues. People are extremely emotional, and filter are at a maximum. That includes myself! For decades I called myself "completely healthy", I completely ignored lots and lots of ever increasing issues and interpreted them as "normal part of (my) life". Only when ALL of them went away during chelation I found out that no, warts on the feet, psoriasis, RSI, dry eyes, frequent colds, "winter depression", irritability, and lots and lots of small and not so small issues are NOT normal at all. I went to an orthodontist once because since teenagehood I had had crooked teeth. So I even knew I had an issue. And yet, when the doctor told me my mouth was "a major construction site" I was so shocked I never went back there (eventually I went to others after getting over the shock, got it all fixed over years, incl. jaw surgery, perfect teeth now, what a huge difference). This was not even a severe issue and completely fixable, and yet my brain was in complete denial! I had ignored it for decades, and when somebody told me, even though I knew, I went into active denial mode. So if I learned one thing it is this: You cannot tell people anything about health - not if they feel the topic impacts them (if they accepted the message).

I have friends with amalgam fillings, and I see issues that I had and that are now gone. I say nothing at all. I did tell them what my problem was once, that's enough. It would be useless and 100% unwelcome. The brain power to ignore health issues with great force is enormous! How many stories are there of people ignoring obvious bad signs, like blood in the stool, or even just the many problems of being obese, for a long time until it is too late? And who am I to judge? Actually combating the problem takes a huge effort of money and time. You can't just take a few doses of chelator and that's it. Your body has to do 99% of the work, and for that to work you must not have stress, you must be able to lie down when you want to, do nothing for weeks during some phases. If I was a doctor I would NOT offer those treatments or deal with this problem. The world is not ready for heavy metal poisoning diagnosis, almost nobody takes it seriously. Even the lead issue (and lead is a lot less worse than mercury) for which we actually have a public understanding and accepting is only quite abstract, which is why there still are so many places with lead pipes and lead paint, or lead in aviation fuel (I'm a private pilot too...). People don't really deeply understand what a problem it is, the mostly observational study statistics based knowledge does not get to an emotional layer, it remains too abstract.

I took well over a thousand hours of medical lectures and courses over the years, incl. "side subjects" such as chemistry (all kinds of courses), biology, statistics (lots and lots), so I think I have a bit of insight now. However, when I read papers such as what you linked it feels to me like aliens writing about human love. It feels to me like there is no real connection between the problem and what is written. I completely understand how those writing such papers get there, as I said, I studied it quite a bit. I understand that it's the best option we have. But all I can say is that it just doesn't feel right to me, that there is a huge gap between the papers and reality.

For example: The problem with knowledge gained from observational studies in general is is that if you have an individual person it is impossible to prove anything based on that knowledge. You only have knowledge applicable to the population. So skeptics will point at everyone who says they have that problem and ask for proof - which is impossible to show. It's like a card trick: If you look at every person individually there is no problem, only if you look at all of them together will you see it. But action for a sick person always is on the individual level.

EDIT:

Oh and by the way, many of the studies that go into such papers about amalgam are silly to me - now. I would have thought them to be perfectly reasonable ten years ago though, which shows it's not that anyone is "stupid", it's just that you don't think of everything that probably needs thinking of.

For example, quite a number of such studies that look at amalgam look at patients after amalgam removal compared to patients that keep it. The period is about a year most of the time, and nothing else is done (no chelation therapy). To me, with what I know from myself now and rethinking it too, this is silly. Why would you expect anyone to feel better after amalgam removal? At most you should expect that they don't feel worse. After all, they still have all the mercury stored that was deposited over the decades. There have been studies on industrial mercury accident survivors that showed that they retained large deposits even until after death much later, showing that it's a myth that the body gets rid of it all on its own (my experience: it does so, but only after the process has been started and helped using lots of chelators; also, in the literature there are many chronic mercury patients where the first few times after chelation there is very little mercury in urine, but after a few times it suddenly jumps to far higher numbers. Happened to me too - it started high, went down quickly linearly, then suddenly jumped up significantly).

A doctor wrote, and I use my own words but I think I remain true to the original, that you can compare heavy metal poisoning with throwing a spanner into a machine. Just because you stop (throwing in new ones) doesn't mean it's okay now, and you can expect it to get worse over time even though exposure stops. That's because - as the doctor wrote - at least some of the mercury isn't "safely tucked away" and inactive, it keeps messing up cell machinery because it remains in the cycle.

That means that IMO most of the studies I did read made assumptions that I think are inaccurate to begin with.

Of course, I don't see any way to get much better any time soon. Not long ago I read the paper about the problems of measuring zinc levels in a human body. It's amazingly complex and inaccurate, and that is a very basic element to be measured! The only way to measure heavy metal body burden is to cut pieces off of various organs and send them to the lab. There is no non-invasive test that can give you final undisputable results. So, given the "unprovability" on an individual basis, it goes back to what I wrote above about medical knowledge from mostly observational studies.


That's some story, thanks for sharing.

You took an analytical approach to finding a cure, and eliminated causes. I think this is something that is missing in medicine, with (for instance) doctors prescribing SSRIs and counseling for every depressed patients that enters their office. It's great that you created your own personalized approach and got help with it, but it still makes me feel sad for the people who are less lucky, and for the state of medicine in general.




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