LoLinda Posted October 22, 2016 Report Share Posted October 22, 2016 I got tested - so I finally know what causes my POTS. In case anybody is interested, I have written down my experiences, here: Labs which do the tests Treatment: doctors, medical treatments, harmless stuff one can try at home Research: how the antibodies cause POTS Quote Link to comment Share on other sites More sharing options...
haugr Posted October 23, 2016 Report Share Posted October 23, 2016 Wow LoLinda, that is awesome information. Thank you for posting. Quote Link to comment Share on other sites More sharing options...
Chaos Posted October 24, 2016 Report Share Posted October 24, 2016 Thanks for posting this. Was also tested thru this lab and found to have positive results. Hope this leads to some more treatment options. Quote Link to comment Share on other sites More sharing options...
LoLinda Posted November 6, 2016 Author Report Share Posted November 6, 2016 Hi haugr and Chaos, On 10/22/2016 at 10:10 PM, haugr said: Thank you for posting. On 10/24/2016 at 5:04 PM, Chaos said: Thanks for posting this. Was also tested thru this lab and found to have positive results. Hope this leads to some more treatment options. Welcome You can imagine, how happy I was finally having found a cause for my POTS.... Finally knowing what brings it about!! Now, regarding treatments, there are medical treatment chances and doctors as linked above. The problem is that the newest insight from a study by Prof Scheibenbogen indicates that even plasmapheresis offers only temporary relief. Well, the antibodies are simply reproduced after a while. (The study was on CFS patients. But this issue will be the same in POTS.) So, honestly, we have to search for treatments ourselves. Being a researcher, I spent the last weeks scanning tons of research on what helps other autoimmune problems and there is so, so many harmless stuff ranging from resistant starch over vitamin D to prolonged water fasting, which actually do have research to support their benefit. No doctor told me about these!! I have resolved my CFS myself, and I am determined to get this **** POTS out of my life and lead a healthy normal happy life again, out of bed. Here I posted about this Quote Link to comment Share on other sites More sharing options...
Chaos Posted November 10, 2016 Report Share Posted November 10, 2016 I tested positive for 6 of the 9 antibodies as well as "at risk" for 1 other one. I agree with you that it is really nice to have a "cause" finally for all these symptoms. Thanks again for all the research. I'll try to answer your survey questions on your other thread. Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You can post now and register later. If you have an account, sign in now to post with your account.