@Hip @Gingergrrl @kangaSue
Hello, I have finally sent my blood to the German CellTrend and I already have the results. I have given posivo in an auto antibody and in risk in another. In Spain they do not usually give inmonoglobulins, do you think that with these results I could use them? I understand that having a single positive antibody car would suffice, I do not think it is necessary to have several different ones. I understand that that single auto antibody is bugging me and causing POTS. Here the results:
Hello. I am glad you have positive results, hopefully in time you can try immunotherapy, although I imagine you'd need more evidence than a single blood test, probably other tests too before having IVGG therapy for POTS? I'd get extra blood tests like IgG subclasses (IgG1, IgG3, IgG3, IgG4), IgE, Lymphocyte Subsets, T/NK/B Cell activation markers etc. I say this as it's unlikely a doctor is allowed to prescribed powerful ad potentially dangerous drugs because of one abnormal blood test result (Celltrend) and also take on board these are only experimental tests, they are not validated tests used in hospitals, just for research only.
I used to be very enthusiastic about this Celltrend test, but now I am confused about the accuracy, because the test collection method seems up to the client, up to us, to arrange. If like me, you're an amateur and have no doctor or nurse, then things get tricky with trying to access blood tubes, to get permission to buy them as well as naturally a hospital or medical supply store is suspicious why a patient is requesting empty tubes for a test, as they expect a special test kit from Celltrend - which they don't supply us!
Please can you answer the following if possible? I'd appreciate it:
1) Outside Germany, CellTrend laboratory tell me they can't supply test tubes (POTS/CFS test kit), and you have to source the blood tubes yourself. Did you experience this as well? When I sent my blood off, I was told that the test will probably fail, because the 'tubes aren't sterile'. Then another nurse told me this was incorrect, and the tubes should be SST or the serum will be damaged, because there is no preservative in the glass tube. So I get conflicting messages from the people collecting my blood sample at home.
2) If so, did you use plain glass sterile tubes from a hospital lab or did you use an SST (serum separator tube)?
3) After taking blood, did you let the blood clot for 15/30 minute sitting upright,, centrifuge it (spin) in a hospital lab, and then post the blood off to the lab? It's literally impossible I found to get the blood from your arm, to a hospital in a few minutes. It takes time and you have to have a machine immediately on hand to 'spin' the sample (centrifuge) it.
4) Did you get it confirmed by Celltrend it arrived to the lab within 24hrs? Outside Germany, FEDEX/DHL cannot promise to get blood to the laboratory within 24hrs.
5) Did you also notice if Celltrend printed the date they tested your sample? I found this very strange mine was missing both times. All laboratories always state the time and date, my results didn't put this, so for all I know it took a week to test it.
I would like to do this test again, for the 3rd time, but I think it would be great to hear from a patient how they collected the blood, what type of tube, and if their sample is dated on the test result to prove how long it took to test the blood sample. Personally, I think mine sat in the postal package for days and got too hot, I can't prove that though, all I know is phoned up and apparently they were on holiday as they didn't respond for days, not really a good sign if no one is in the lab, but your blood is meant to being processed.
Thanks for any feedback.
