p8d Posted March 21, 2018 Report Share Posted March 21, 2018 Has anyone been in contact with this German company recently? I was going to send my blood sample there for their POTS autoantibodies screening but am no longer getting email replies and the new phone number on their website is “no longer in service”. Previously they were very responsive to emails. This is the only company in the world that does this testing. Thanks for any info. Quote Link to comment Share on other sites More sharing options...
dancer65 Posted March 22, 2018 Report Share Posted March 22, 2018 Hi I have seen people posting about them on pheonix rising ME CFS forum maybe you could ask there , just a thought Quote Link to comment Share on other sites More sharing options...
p8d Posted March 22, 2018 Author Report Share Posted March 22, 2018 I heard back from them when I filled out the form on their website but not the email address on their contact page. Go figure. I will check the Phoenix rising site as I have questions on shipping. Thanks so much! Quote Link to comment Share on other sites More sharing options...
dancer65 Posted March 22, 2018 Report Share Posted March 22, 2018 No problem they have a Facebook page as well maybe check their e mail address on there . Hope you get it sorted ! Quote Link to comment Share on other sites More sharing options...
Clb75 Posted March 22, 2018 Report Share Posted March 22, 2018 Would you mind posting an update once you get the results? I’ve been curious about this lab, and would love to hear about any positive results they may find and how the experience was trying to ship everything over there etc. I’m also curious to hear about the next step people are taking once they find out they have the antibodies. I’m already on ivig for a separate autoimmune disease, and it has done nothing for my pots symptoms. I’ve been housebound for 4 years now, and had ivig for 2 years before I even developed pots. Maybe the dose would have to be increased or maybe it’s just not a fit in my case, not sure! Anyway, I would love to hear about your experience with all of this. Thanks! Quote Link to comment Share on other sites More sharing options...
p8d Posted March 22, 2018 Author Report Share Posted March 22, 2018 @Clb75 may I enquirer what other autoimmune disease you get IVIG for? Feel free to pm me if that’s better. I certainly will update everyone. I am hoping we can use this as ammunition to get my insurance company to pay for IVIG and just figure out what is going on. I was diagnosed with MCTD after POTS and am post-viral onset. My mom is an autoimmune disaster, 4 different diseases and that side of the family is crazy with autoimmune diseases. I am pretty positive my POTS is autoimmune too. My rheumatologist isn’t keen on IVIG but neuro and cardiologist are. Have you seen this https://vimeo.com/243160944? It’s from a Dysautonomia International conference recently. She talks about her protocol and doses for refractory patients. I plan to get my blood drawn and sent off Monday although my neurologist said there are issues with shipping but didn’t give me details. I *think* I have that sorted with FedEx. Quote Link to comment Share on other sites More sharing options...
Clb75 Posted March 22, 2018 Report Share Posted March 22, 2018 Hi, I have CIDP, it causes motor and sensory neuropathy. I had it about 2 years before I got POTS, and I suspect the small fiber nerve damage from it along with it being autoimmune in general may have been a trigger for my POTS though I don’t know for sure. Ivig has been working great for CIDP , it just didn’t do anything to prevent the onset of pots or help me now that I have it. Ivig is very hard to get insurance approval for, I think it’s smart to get the test for the antibodies so you will have more evidence to push for a reason to try Ivig. I’ll check out the link, thanks! Hopefully the shipping is sorted out, Good luck with everything! Quote Link to comment Share on other sites More sharing options...
vxmike Posted March 24, 2018 Report Share Posted March 24, 2018 On 3/22/2018 at 1:08 PM, p8d said: @Clb75 may I enquirer what other autoimmune disease you get IVIG for? Feel free to pm me if that’s better. I certainly will update everyone. I am hoping we can use this as ammunition to get my insurance company to pay for IVIG and just figure out what is going on. I was diagnosed with MCTD after POTS and am post-viral onset. My mom is an autoimmune disaster, 4 different diseases and that side of the family is crazy with autoimmune diseases. I am pretty positive my POTS is autoimmune too. My rheumatologist isn’t keen on IVIG but neuro and cardiologist are. Have you seen this https://vimeo.com/243160944? It’s from a Dysautonomia International conference recently. She talks about her protocol and doses for refractory patients. I plan to get my blood drawn and sent off Monday although my neurologist said there are issues with shipping but didn’t give me details. I *think* I have that sorted with FedEx. If one truly has autoimmune POTS antibodies I would *assume* some kind of immunosuppression or plasmapheresis would be a treatment, but thus far I've not read any papers or recommendations of such. It's such a new avenue for POTS. I believe frequent plasma donation will actually accomplish the same thing as plasmapheresis on a lighter scale assuming the body doesn't regenerate the antibodies quicker than one can dump their antibodies via the donated plasma. I'd try this but losing volume from donation isn't exactly a viable option for a POTS patient! Too bad the donation centers won't replenish you with a couple liters of saline afterwards. Quote Link to comment Share on other sites More sharing options...
Clb75 Posted March 24, 2018 Report Share Posted March 24, 2018 Yes, I think losing blood volume is very important to consider! My neurologist doesn’t think plasmapheresis would be a good idea for that reason. Plus it’s very invasive, he told me you have to get a catheter placed plus the first treatment is on an inpatient basis for about 10 days. You’re right about this being a new avenue for pots patients, I’ll be very interested to see how this develops, especially now that the antibody test is available from Germany. Quote Link to comment Share on other sites More sharing options...
p8d Posted March 24, 2018 Author Report Share Posted March 24, 2018 I will say that after my autoimmune disease diagnosis and subsequent starting of hydroxychloroquine, a DMARD, I saw an improvement in fatigue and muscle and joint pain and sleep. It hasn’t done anything for POTS and wasn’t dramatic but any small improvement helps. Quote Link to comment Share on other sites More sharing options...
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