Apparently the Cell Trend test has less than ideal sensitivity as it's an ELISA?
For example I've had it done twice. The 1st one was abnormal and the 2nd one normal. So one minute I was like 'yay' I've got Autoimmune POTS and might get some immunotherapy and the next, err, there's nothing to see and now I'm not getting any treatment.
Tube type:
The lab won't send you the tubes in a kit, at least not outside Germany. Instead, you have to source them yourself which is rather unorthodox for a laboratory in my view, as I've used many. To find the tubes, I had to go begging my local hospital, who of course were suspicious why some patient turns up in a wheelchair looking like a ghost begging for some SST tubes with a 'story' why they want them. In this day and age, it's practically impossible to get hold of them in person as naturally people are curious why you haven't been sent a kit from the laboratory.
Having said that, for a research level specialist test, the prices for the assays are very cheap and if it was a 'proper' test it would be at least 3x the cost due to marketing overheads and glossy brochures. I had an issue with the tubes because one minute I'm told they need to be plain glass tubes (with no preservative) and the next, no, you can use SST's. Maybe I screwed it up and it wrecked my own results by incorrect sample handling? Who knows, I did let it sit upright for 30 mins though to clot. At least you only need to send a tiny amount of blood after spinning it - which is again hassle to arrange. I think it was 2ml serum for all the tests combined which is great if you're sensitive to blood loss.
Postage outside Europe or far away from Germany:
I wouldn't advise using Cell Trend unless you live in Germany or near it in bordering European countries because if you live further away, it's basically impossible to get the blood guaranteed to get there within 24 hrs because the airport for the major postal services isn't near the laboratory and takes a while to drive there. I learnt that by both times looking at an 'app' you can use to see when the sample got there, one time it was sat there overnight as the delivery truck got stuck in traffic. As a patient, you don't really think about these things, you just presume you pay for the most expensive postage and if they say they 'might' be able to get in there in 24hrs, you take it as a 'will' be able to.
What is odd to me, is the POTS patients I've spoken to getting humongously high results on the tests are not housebound and bedridden, but more mobile. Naturally they're happy and I'm pleased for them as they deserve help. Yet it confuses me, the patients like me, only show a few positive results but are still smashed with POTS? So either I don't have autoimmune POTS at all, or I do, and the test isn't reliable, or the disease fluctuates so much that it can miss it? I have no idea. I do realise antibodies fluctuate, but I haven't spoken to another patient yet who's had a positive/negative result.
I'm waiting to see if a better assay comes out for POTS that doesn't use ELISA. I think it will do but when I don't know. In the meantime, if I was in America and had POTS I'd try and get the Mayo Clinic Dysautonomia panels instead or in addition.