For me its really hard to understand this problems with adrenergic & muscarinic receptor antibodies...and treatment. I read some studies, but Im not understanding of it...my poor English skills :-/
@MartinK Please do not feel bad and I am a native English speaker and all of this stuff is still very challenging for me to understand!
@Gingergrrl was able to get IVIG and rituximab based on a strong case for autoimmunity, but she was positive on most all of the CellTrend and had some other autoantibodies too.
I was positive on 7/9 Cell Trend Autoantibodies (and we ran the test twice several months apart just to be certain and both times it was 7/9). At that time, Cell Trend only had nine tests and did not yet offer the angiotensin or endothelin autoantibody tests (so I actually do not know if I am positive on those two).
I was able to get high dose IVIG (and one year later) I was able to try Rituximab b/c I had such a positive response to IVIG. It was based on my overall autoimmune profile (positive ANA titer, Hashimoto's Disease, MCAS, calcium channel autoantibody that correlates with LEMS, anti GAD65, and then the 7/9 positive Cell Trend Abs which led my doctor to diagnose me with Autoimmune POTS).
It was very challenging to get the initial insurance approval for IVIG but once it was clear that I was a responder, they were more open to continuing it, and then to letting me try Rituximab, b/c it offered a possible cure (vs. the IVIG was more of a temporary band-aid).
I will have done IVIG for two years with my next IVIG cycle in July and I will have done Rituximab for one year with my 6th infusion in August. I have a long-running thread on PR re: my experiences with IVIG & Rituximab (so I won't repeat everything here!) but at the moment I consider myself in remission. I no longer use a wheelchair (after almost 4 yrs of 24/7 wheelchair) and I can walk and drive as much as needed at present.
I will never use the word "cure" and I am still doing both treatments and still taking about six other meds plus many supplements. I am not at "pre-illness" level and honestly do not ever expect to be. But if I could maintain this level in the future after stopping IVIG and Rituximab, I would be overjoyed and would potentially be able to work part-time and get back to my career in some form (although I don't want to get my hopes up yet).
You might also look at midodrine. It’s an alpha adrenergic agonist that might help improve the function of that system.
Midodrine is one of the meds that I still take daily and has been very helpful for me. I know that it is an alpha adrenergic agonist like
@Ema said but I lack the science to really explain what that means. We believe that it allows more blood to perfuse my heart and lungs when I stand so it is easier for me to breath.
Im on SCIG for some time, half year +- , but most helpfull for me in HBOT right now.
Martin, did you have any benefit from the SCIG? If your problem is autoimmune (and I do not know if it is), then you would never be able to get a high enough dose from SCIG. For autoimmunity, you need to do high dose IVIG (vs. low dose in immune deficiency). I have never tried HBOT but I know of other people who found it helpful.
KDM still told me about Lyme, but Im not sure with it...and Im not sure and dont know some possible connections with it.
I am negative for Lyme on all tests but if you were considering Rituximab (not sure if you were?), you would NOT want to do it with active Lyme or infections.
We‘ve got the same autoantibody-pattern at celltrend
(I only have additionally the angiotensin-autoantibodies and didn‘t get tested for the endothelinABs, so, not sure about them)
Hi Malea! I like your new avatar and hope you are doing okay. After I do my 6th Rituximab infusion (in August), I am going to re-test all of the Cell Trend autoantibodies and also test the two new ones (angiotensin & endothelin) to see if I am positive. We want to get a new baseline on all of my autoantibody levels after two years of treatment (and my prior tests were run in 2016). Can you remind me, did you ever end up trying the Losartan b/c of the angiotensin autoantibodies? I think you told me but I cannot remember!