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- 81
- Location
- Barcelona
I apologize if you already said this but have you done one of the autoimmune dysautonomia panels from Mayo? The blood can be sent to the lab and you do not have to go there in person. If you have not done one, I would Google their panels and the most useful would be PAVAL or DYS1 (and both test very similar autoantibodies but PAVAL focuses on the paraneoplastic autoantibodies).
No, I haven't done that panel.
Is the Mayo Clinic the only place where I can have these few antibodies done? I'm in a difficult financial situation right now and can't afford more expensive testing.
I've been two days off LDN and I have my normal sleep back, but I haven't recovered my "normal" state yet. I've been housebound again for the whole week.
Yesterday I was looking at some videos from the Dysautonomia International Conference and someone said that Muscharinic Cholinergic Receptor 3 Autoantibodies are found in Sjogrens, and since I'm at risk for this autoantibody I fear I could develop this disease in the future and add it to my already long list of diagnosis.
I'm thinking about traveling to London to see Dr. Hughes. I doubt doctors in Spain will know how to treat this whole set of stuff I have. Maybe he can prescribe what's needed for me and then I can ask my doctor to prescribe me the protocol in Spain. I really hope I can have a combo of anticoagulants + IVIG as a front-line treatment.
I also read somewhere that it would be interesting to have a PCR panel of all the pathogens suspected for creating autoimmunity, such as EVB, HHV-&, Mycoplasmas, CMV...
I'm already clean of all STDs and I don't seem to have Lyme either.