@Gingergrrl thanks
, I am not too sure how much the A-1 receptor results are as they are only 4.2 points above what is classed as abnormal, but I am going to re-do all the tests in 6 months, I believe I was having a good day so maybe my antibody levels were lower than usual?
Are you going to re-do the test in six months after having treatment or re-do it without any treatment to see if you get similar results back the second time? I am not sure that you having a good day vs. bad day (on the day of the blood draw) would change the autoantibody levels found (but others might know more about this than I do).
Do you think 11.4 would be a high enough value to think they are having a negative effect?
I truly have no idea. I know re: the calcium channel autoantibody that I have, some Neuros have said that the level does not correlate with the symptoms, meaning that someone could have a low level but very severe symptoms and another person could have a high level and very minor symptoms. But I am not sure if this also applies to the Cell Trend autoantibodies (and I am also not even sure that all Neuros agree on this re: the calcium channel autoantibodies).
As clearly with the Muscuranic and AT1R receptors etc, they are huuuge ranges and can't doubt they are causing a lot of my symtpoms
I would assume that they are causing symptoms, too.
I just wonder what other tests I should have, I am going to push for anti phospholipid syndrome testing and a few others, any you can think of that would go well with testing for autoimmune POTS?
If you are planning to do IVIG, especially high dose IVIG for autoimmunity, I would do the anti phospholipid panel and make sure it is negative (b/c if positive, you are at a much higher risk of getting a blood clot from IVIG). I think another useful panel would be one of the autoimmune panels from Mayo like DYS1 or PAVAL.
Thanks
@andybonse and
@Gingergrrl. I'm from US. I'll call a lab to see if they can draw blood without a doctor's order.
I think it varies per state but in my state, I was able to go to a specialty lab with the instructions from Cell Trend but required a doctor's note for the actual blood draw.
Are you currently or will you be on any autoimmune / rheumatology drugs when you retest your autoantibodies? I know you've been doing IVIG and have had success. But does anyone how do doctors normally retest autoantibodies after having prescribed autoimmune drugs?
I am now completely done with IVIG and will not be re-testing autoantibodies until Sept when there has been at least an eight week minimum from my last IVIG. Your autoantibodies are never truly accurate after having IVIG but there is nothing I can do about that and waiting eight weeks is a long enough period of time per both of my doctors.
I will still be doing Rituximab (next infusion which is #6 is tomorrow morning) but my doctor said that will not have the potential to provide false positives like IVIG could. Rituximab keeps my B-cells at zero so my autoantibody levels should all be lower now (unless something has a false positive from prior IVIG). All of this is me paraphrasing and don't quote me on anything and please ask your own doctor!
I would like to test my autoantibodies using Celltrend, but have been on Plaquenil for sometime.
I have never taken Plaquenil and am not familiar with how it affects autoantibodies. Are you taking it for Sjogrens?
I want ti do the celltrend and cunningham panel so bad as both my doctors suspect a form of autoimmune encephalitis. How much did the panel cost you?
I don't think the Cell Trend panel would give you any information re: autoimmune encephalitis and I have never done the Cunningham Panel (and can't remember what it tests)? I'm not sure if you are asking me how much Cell Trend costs (or asking someone else?) but when I did it in 2016, it was somewhere between $500 and $600 (I can't remember the exact amount) if you include the blood draw at specialty lab, nine Cell Trend tests, Fedex Overnight International cold pack box for shipping, and bank transfer into Euros plus bank fee. A lot of this is streamlined now (and Center for Complex Diseases has a kit for doing Cell Trend test and I believe you can pay with PayPal and don't have to do the bank transfer into Euros, etc). I can tell you exactly what it costs when I re-do it in Sept.
Have you ever done the Mayo ENS1, PAVAL, Cyrex array 5 or quest autoimmune neurology panels?
Also not sure if you are asking me but I have done PAVAL from Mayo in 2016 (but not the others you mentioned). When I do the tests in Sept, I will be doing the DYS1 Panel from Mayo instead of PAVAL b/c it also includes anti GAD65 and we want to test if I remain positive for that one, too.