"Doctors couldn’t help. They turned to a shadow system of DIY medical tests." Washington Post article, June 9, 2024

[Mary]

https://www.washingtonpost.com/technology/2024/06/09/home-health-tests-doctors-fda/

Hope you all can read this and that it's not blocked for non-subscribers -

This all sounded so familiar, patients being gaslit by their doctors and left to their own devices. It's nothing new for anyone here but I was just glad to see the proliferation of testing options for individuals. Yeah, there are risks for persons treating themselves but oftentimes it's riskier to rely on doctors -

 

[Byles]

I couldn't read it here's another link

 

[Byles]

Very recognisable. And what's maybe even worse is that if you tell your GP or some other regular medical specialist about tests you took yourself they don't take it seriously and often don't even want to look at it.

The medical establishment makes me so angry. They mostly describe you horrible meds that only makes things worse, while not explaining any of the side effects and barely listening to what you say/want them to read.

 

[almost]

Thanks for the link @Byles, original was blocked for me.

I've been doing some of my own testing for a couple of years, and I think it is valuable. It hasn't given me the secret key yet, but I am glad it is available. I am fortunate that my primary doc is very amenable to my requests for testing in-house. He has ordered a bleep-load of tests at my request, but for those less fortunate in docs, DIY is necessary.

While consulting more than a dozen specialists, she was struck by providers’ disinterest in unraveling the cause of her condition.

This is the key statement for me. Outside my primary doc, I get this EVERYWHERE I go. EVERY specialist can only see the walls of their own silo. This is why I have taken control of my own diagnostics, and yes, I have received push-back -- a lot. I don't care.

 

[Seri]

Interesting read, and it does sound familiar. I do at home testing as much as I can get away with, especially with being diabetic. I even wear a CGM (continuous glucose monitor) which takes samples of my blood continuously, and it gets changed out at home twice a month. Of course; that's not exactly what they are referring to but without it, I couldn't live.

And this quote:

As long as the medical system remains slow there is going to be a market for people who take matters into their own hands, said Anarghya Vardhana, a Silicon Valley investor. “If you don’t give patients the tools, they will go figure it out themselves,” she added.

In my honest opinion, that sums it up for me. If docs or other medical personnel don't give me answers, then I'm going to be doing my own research and doing what I can to find answers for myself. Not to mention docs don't always get it right either. Why should they be the only way to get something tested? I've specifically asked for certain tests in the past and was told it wasn't necessary and I didn't need it, and I ended up nearly dead because of it. So yeah, if I can, I'm definitely going to look for other alternatives than just take a doc's word for it.

 

[Viala]

People take the matters into their own hands ONLY because doctors are ineffective.

 

[almost]

An array of basic first foods — from bananas to sweet potatoes — caused her six-month old Annika to vomit uncontrollably

That was me, except for bananas and rice cereal, the ONLY two foods I could eat until I was a toddler. There were no such things as stool tests then, and I guess I didn't get to my aunt's and uncle's farms enough. My great mom did, however, find a doc that did essentially elimination diet work with me, which did work. My gut was still not right though, still isn't, and that is probably the base layer of my issues. Life long nutrient malabsorption = life long malnutrition, the evidence of which is plain to see, but has ANY doctor ever said anything? No. I figured it out with a lot of reading and testing. A recent stool test was quite revealing.

There are other layers in my case too, a congenital heart defect (that was repaired to save my life), genetic defects in metals handling (carrier for hemochromatosis and Wilson's - found at request of my testing), and the yet undiscovered trigger to what was eventually a CFS diagnosis, although I still am not totally sure about that.

Despite my life long history of heart issues, my latest testing seems to have found something that the cardiologist missed (didn't look for) that may be central to my steep decline in the last year

Extensive calcification along the left inferior ventricle.

That was part of the report from a chest CT I requested to look for a possible thymoma, the only thing left I could think of that could cause the weakness I feel in my heart on exertion, and it was a hail-Mary shot, but my great primary found a way to order it, and there was the unexpected finding. I've had an recent angiogram, which pronounced me clear (which the CT did too, from a atherosclerosis perspective). We'll see what my cardiologist has to say about this, but I can't wait for that pronouncement. I researched and started my own treatment (basically lots of Vitamin K2, and IP-6). Two weeks in, my Garmin says I'm doing better -- the graphs improved the day after I started my treatment, but I don't feel better yet. We'll see. Maybe much ado about nothing. I don't think so, though.

I would have none of these answers had I not been the one pushing for them, and these things can cost people their lives -- it's not trivial. The thing that has astonished me is the lack of urgency at all levels. Coupled with the lack of curiosity mentioned earlier, I would encourage anyone to go their own way.

 

[kushami]

“I say, I’m not a restaurant!”

How about (gently) asking the patient what led to them ordering all these expensive tests, and explaining (non-condescendingly) why testing has to be used judiciously lest it end up causing harm.

Then the doctor and patient might both learn something.

 

[Viala]

“I say, I’m not a restaurant!”

Oh but they are a restaurant and we've already paid the bill, in our taxes.

If they don't know what's wrong, it's their obligation to investigate. All of this is because medical care has become monetized. Well in some country some time ago it was cheap and effective. Same as water. And electricity. And housing. And education. It was not even a western country.

 

[lenora]

Thanks, Mary. I do get the Post but couldn't read this article in its entirety. Interesting, huh?

If we could have tests of our own, it would help immensely (I hope), however there are none that I know of. Still, I do understand that do-it-yourself medical tests are even being offered by large companies such as LabCorp. This is good news and already there are three companies that are putting tests together. I think the medical world is in for a jolt at some point. Yours, Lenora

 

[Mary]

Hi @lenora - this link to the article posted by @Byles should work: https://web.archive.org/web/2024060...ogy/2024/06/09/home-health-tests-doctors-fda/

I do hope the medical world gets its jolt!

 

[Artemisia]

I have personally never met a single doctor who knew much about me/cfs. I don't trust their judgment on what tests are reasonable or not when they put in their doctors' notes that I have "chronic fatigue."

They don't acknowledge the existence of an illness that has destroyed my life? I don't automatically acknowledge or submit to their authority.

They need to remember that many of us with complex illnesses are informed, and know a lot more than they do about our illness. They actually think it's impossible for a layperson to know anything medical and they are wrong. I bet most people here read more scientific research on a monthly basis than does the average doctor.

I hope that we will reach critical mass in people addressing the misplaced authority and control vested in the medical and pharma industries. Then we would have some leverage in demanding decent treatment from these people.

 

[Artemisia]

Lots of predatory characters in the alt health world too.

I've heard the home tests are inaccurate. I'd like to do a home thyroid and vit D test but if it's not accurate there's no point.

Everlywell, an eight-year-old start-up offering more than two-dozen home tests, has a dedicated team to analyze Americans’ Google searches, determining which ailments it should target with tests.

This is classic market research, internet style. Tells me they're savvy business owners but can they make accurate tests?

Companies see a major opportunity in the sea change of health habits triggered by the covid-19 pandemic, said health-tech investor Christina Farr.

It's a shame when people get dollar signs in their eyes when looking at sick people.

 

[hapl808]

They don't acknowledge the existence of an illness that has destroyed my life? I don't automatically acknowledge or submit to their authority.

Yep, after a lifetime of seeking out the most respected doctors - I realized that my health would've been vastly better if I never saw a single physician for anything in my whole life. That was a sobering thought.

I never had an infection that would've killed me. The only operation was a septoplasty that was supposed to improve my breathing, but didn't really (changing my diet did). I potentially had a bad reaction to a vaccine that caused me lifelong muscular problems (I can't say definitively, but temporally associated).

So the few times I got a Z-Pack I probably would've been fine with some ginger lemon tea and some extra garlic. All the various 'treatments' I got for my stomach problems, degenerative muscular problems, etc - haven't really helped me at all. And a few key interventions that caused me permanent harm (an extremely rough neurologist who damaged a few muscles permanently).

People take the matters into their own hands ONLY because doctors are ineffective.

Not only ineffective, but 1) unwilling to admit they're ineffective 2) unwilling to even try if they don't know what's wrong 3) blame you if they can't figure things out.

Like a restaurant that blames you for getting food poisoning at their establishment, then denies it happened.

 

[lenora]

I have a number of neurological diseases (or problems as they may be called). Some have names; others don't. I have to say that most are treated the exact same way. I can't even blame the doctor(s)....if a cause is unknown, it's unknown. You should always be treated with interest and respect by a doctor, even if he/she doesn't know the cause.

I do know that I've cut down on the numbers of physicians I see. It's a problem to have to go somewhere every few days. Tests are also needed, so I'm including them.

For some things there are no answers....they just are. They're going to have a beginning and an end and no, for the most part, they aren't pretty or much fun.

I've made peace with them.....done my best and I'll live as best I can.

I have weird things, but one that isn't was a heart attack about 3 years ago. I see the cardiologist who has helped with my high BP, wonky heart rate and finding the right cholesterol drugs. I have 7 stents, and I'm grateful that they were available. The rest of my problems, I've made my peace with. I hope all of you will either find relief or acceptance. I wish all of you well. Oh, and if you're young and able, do keep looking. Yours, Lenora

 

[Viala]

Not only ineffective, but 1) unwilling to admit they're ineffective 2) unwilling to even try if they don't know what's wrong 3) blame you if they can't figure things out.

The list can go on, gaslighting, superiority, attacking patients that think or research on their own and they discard patients when they're exposed as ineffective. All narcissistic traits to protect medical industry. They're trained in med schools to be like this without even realizing it.

People are not prepared for this. They walk into a medical office with their guard down and trust up. They do not expect any type of manipulation or malpractice, and it's all wrapped in 'we want what's best for you'.

Then a doctor does something good and people get confused, because it can't be bad if it's sometimes good. I guess this dychotomy is what keeps everyone from not taking any action. Also a manipulative technique. There are solid arguments in favor and against, can't be proved. It's like a double blind confusion, perfect for maintaining it indefinitely. It seems that they're convinced their medicine works, but don't work for us anymore.

 

[BrightCandle]

Everything I know and have treated I found from my own tests. Not once has a doctor ordered test been useful in 7 years of this disease. They wont order anything that I know from the research is likely to show a problem only what wont.

The one thing I find challenging doing DIY diagnostics is that I am a lot more limited as to what I can run and they can be really tricky to find. If I could travel and get blood drawn the options open up a little but in the years I have been doing this I see more and more finger prick and blood blot tests appearing where previously it required a vile of blood. There are many more things I would want to run that aren't available yet.

One of the more odd things that really irritates me is that if I present a test that shows an abnormality that they can treat they just wont accept the result, nor run it themselves. Doctors are just obstructive to getting healthcare now, its denied to those of us with ME/CFS. So I end up treating myself. The other thing that has happened a couple of times now is they don't get the doses of drugs right on the rare occasion they do treat something, because they don't seem to know their own guidelines and standards. So I often end up ordering drugs anyway!

I am really questioning the value of doctors at this point with increasing access to diagnostics and drugs and publicly accessible standards for dosing combined with interactions. It can't just be ME/CFS patients that are noticing doctors don't know what they are doing and are obstructing diagnostics and treatments.