• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

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


Moderator Resource
Texas Hill Country

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 -
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.
Last edited:


Senior Member
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.
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.


Senior Member
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.


Senior Member
“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.