So I’ve decided to intertwine thoughts on our current medical system along with information about my medical case. My medical case is so overwhelming, I don’t know how to get started discussing it…sometimes, it’s easiest to dive right in.
I’ve included an email I sent to my immunologist today, and as I’ll do with all of my attached emails, I’ll only use the first initial of the last name. If you would really like to know who any of my doctors are, feel free to contact me directly and we can talk. I would just rather preserve their privacy.
Circumstances around this email: I had just seen Dr. K yesterday, and she told me a doctor researcher had just told her that he didn’t feel like he could help, so I wrote this so that she wouldn’t feel too discouraged. I need her to keep trying…
Begin forwarded message:
Date: January 24, 2012 2:04:14 AM PST
To: Dr. K
Subject: Paperwork challenge of my medical case
I was just thinking (and you can remind people who you speak to about my case as well),
one of the main challenges of my case, is that on a quick glance on paper I look pretty healthy–you really have to comb through the pages closely to find any flags of the deficiency, which most people don’t want to do (or have time for).
In a nutshell, what’s so crazy about my case,
is how sick I am clinically when I have all of this normal paperwork–it’s the juxtaposition of the Teddy in front of the doctor who is ill and the paperwork that says I’m not.
(Ie, the same blood draw I cultured positive for bacteremia, my CDC and chem panel were normal–if a researcher was just looking at those blood results from that day in Nov 2005 from St. Joe’s hospital, the research would think I was normal. It’s the fact I cultured positive for two different bacteria that shows the severity of the deficiency–it’s not normal to have a normal CBC with a positive blood culture like that. But you really having to be combing my records closely to even pick up on things like that.)
Or the 30+ negative imaging studies, then the inflamed gallbladder found by a surgeon…and the list goes on and on.
Hence, the struggle to recruit doctors/researchers who don’t know me very well to help me with my case–I just don’t seem that ill on paper.
I’m truly a ‘see it to believe it’ kind of medical case.
And because my paperwork looks normal oh too many times,
then most people don’t feel an urgency to help me.
If someone doesn’t see the extent of my misery themselves, they just don’t believe it’s real.
A lot of it is due to this stupid ‘evidence based medicine’ talk going around in early 21st century medicine.
Common sense tells anyone given how many false negative/false positives there are for *so* many medical tests, that the most important evidence should be the patient’s word itself,
but of course we know that medicine has been hijacked by insurance companies, who don’t want to approve anything,
so limiting medicine to only what can be ‘proven’ by a test result,
means there’s going to be a lot of people being denied medical care who need it, which is more profitable for them. Every denial is money in their pocket.
For example, if a test has a 20% false negative rate, that’s 20% of the people who take that test we know for a fact who will suffer without medical care with this disease (if the doctor just practices ‘evidence based medicine’), but that 20% denied medical care is money saved for the insurance company.
Instead of reminding/encouraging doctors to embrace the word of the patient with their medical instincts in order to help them,
they tell doctors instead to practice ‘evidence based medicine’ and lock those people out.
Everyone should be reminding doctors to just listen.
But ‘evidence based medicine’ is saturated through the culture of medicine now…even doctors use these ‘standards’ to critique each other, where really they should be talking about what a joke ‘evidence base medicine’ is, when the ‘evidence’ has been scientifically proven to be so **faulty***!
(It’s like telling people they must follow a map when 20% of the roads on it are going to drive you off a cliff. Wouldn’t you tell them to use the map, but be careful and use common sense as well? ‘You might have to change course sometimes, even if this avenue swears on paper to be the best route.’ Live in the reality of the moment around you–that’s what doctors should be encouraged to do at all times. But that’s increasing they’re being told/rewarded/encouraged to tell patients to follow the map. Even if it kills them. ‘But you did the right thing’.)
Once we have tests for every disease and those tests are 100% accurate, then we can talk about ‘evidence based medicine’.
Until that day,
medical tests should be a guide post, but the ultimate decision made between a doctor and thr patient themselves…
Medicine the old fashioned way 🙂
All all good doctors know this by instinct…
Their entire world is test results,
which is why it’s so hard for them to grasp the severity of my deficiency, especially so many thousand miles away…
And that is why I need help getting through to them. A doctor’s credibility goes much farther than anything I can say or do.
My voice sounds a little too healthy too…no one believes me.
I just need help being pushed through to the right tests. They’re out there. Hopefully, I’ll live long enough to make it to that point.
Thanks for everything. I know you’re trying your best, and I’m just ranting a little…
It’s all so frustrating 🙂