Don't believe the American Heart Assn. — butter, steak and coconut un likely to kill 7/23/17 LA Time

[JaimeS]

Then i was trying to explain his test was an nk numbers test and the university test was measuring the nk function and my nk cells dont work. He didnt get it.

We've been able to detect the function of NK cells for decades! It's not exactly a standard laboratory test, but it's not news.

But then, my GP didn't understand any of the tests I got back from Mayo. But to be fair, he wasn't trained in immunology like your guy supposedly was!

Why the hell do they have these tests if they arent important???

Good question.

I remember after the methacholine challenge, they said it proved I had a breathing issue of some sort. I said, "asthma?" they said, "....maybe." Then they told me it wasn't specific and it just proved there was something really wrong. At least the nurse had the humor to admit, "bet you could've told us that, eh?"

That reminds me of my absolute favorite: when you react a certain way to a medication or a test and they swear it's the first time in the history of ever that any such thing has ever happened. Then you go home and it's all in the literature and not even as a crazy-wild thing: "occasionally, the patient will..." Mine was, "occasionally the methacholine will test positive but inhaled albuterol will not restore function... this means that, likely..." Meanwhile the nurse was like this has never happened before in the history of diagnostic testing.

Actually, I wonder if they do that to avoid the specter of litigation: if you're the only one this has ever happened to in the history of the world, then it wasn't important to warn you and the tech cannot be expected to have known what to do under such a circumstance.

 

[JaimeS]

Same here. The virologist I saw looked at me as though I was speaking another language.

That strikes me as really, really weird. We've known for a very long time (since the study of AIDS became a thing!) that T cell exhaustion means you might have normal numbers for a long time, even while function goes down. This is exactly the case in other immune cell subsets.

 

[heapsreal]

We've been able to detect the function of NK cells for decades! It's not exactly a standard laboratory test, but it's not news.

Thats what i thought.
Then medicine has known alot about neutrophils much longer and my neutrophil count has been low 90% of the time its tested since cfs onset and its been steadily dropping. It use to say mild neutropenia and now tests say moderate neutropenia. If i bring this subject up the usual answer is that cancer patients have much lower numbers and when its that low they give them a drug to increase their numbers. Most say well if you get an infection then just go on antibiotics, basically wait for the infection to happen and then we treat it. Id say standard regular bugs that everyone gets from cold to a gastro bug takes me alot longer to get over. 24hr gastro bug other get is the 72hr gastro bug for me followed by a crash. No dr has really looked into this. Ive given up worry about drs helping outside of the basics of some symptom treatment. I rarely mention cfs to my gp, they switch off and dont want to deal with it, so i dont go there anymore.

Now when i go to the dr i just say im after some scripts and then talk about football or something like that lol.

 

[sb4]

A few months back I saw a POTS "specialist" Dr, I showed him a test I had done on autoantibodies against the adrenergic and muscarinic receptors. He said he'd never heard of the test and didn't think it was relevant to my case. Absolute incompetance. This guy is supposed to be a specialist in POTS and he's never heard of this which has been studied in several papers over years?!?

Then again the first thing he told me before I'd even sat down was that it was all anxiety.

 

[heapsreal]

Then again the first thing he told me before I'd even sat down was that it was all anxiety.

Yes anxiety and depression, the go to answers when they dont have a clue lol. I just wish they would say, i dont know.

 

[JaimeS]

He said he'd never heard of the test and didn't think it was relevant to my case.

I love how often that's the conclusion. "I don't recognize it, so it must not be significant, because I already surely understand anything of significance..."

Ugh.

 

[Lolo]

I went to a dietitian earlier this year and she told me that saturated fat was bad and margarine was a good food and that there was no scientific evidence that coconut oil was good for you. It's hard to trust/believe anything after that. She was quite young so I don't know what her excuse is. Of course I won't be seeing her again.

And as many here have probably experienced when the doctor is clueless "Are you keen to try anti depressants?" Yep, keen is the word he used. So I tried another doctor at the same centre and asked about being tested for POTS - he hadn't heard of it. But he did let me have the homocysteine test which came out very low and he said that was very good.

The sad and annoying thing is, they get paid well for this crap service.