More and more autoimmunity

[Belbyr]

https://www.autonomicneuroscience.c...zEVeuVYFNdQqXn9TIFEVsMWv11vopzlJOm5QNHLF6X6cM

I know this is mostly discussing POTS and autonomic disorders but so much of it is important to us.

 

[Gingergrrl]

Thanks for posting this @Belbyr and it’s an excellent article. It is very similar/ relevant to my own case and I suspect many others.

 

[Belbyr]

Thanks for posting this @Belbyr and it’s an excellent article. It is very similar/ relevant to my own case and I suspect many others.

I thought of you when I posted. I'm going to demand the Mayo Clinic autoimmune gastro panel when I see Klimas or her nurse again soon. Some of the new autoantibodies Vernino listed are the same ones on that panel.

 

[Gingergrrl]

I thought of you when I posted. I'm going to demand the Mayo Clinic autoimmune gastro panel when I see Klimas or her nurse again soon. Some of the new autoantibodies Vernino listed are the same ones on that panel.

Definitely and you should get that panel if you can (and I don't see why Dr. Klimas cannot order it)? I post in two private groups about my autoantibody & LEMS and I cannot tell you the number of people who were originally given "CFS" diagnoses like I was and almost every single person there has POTS. But then there are also vast differences among the members, too, and some have serious GI issues like you (which I do not have). There is so much more to be learned about these autoantibodies.

 

[Belbyr]

I agree. We already have proof of the immune system being very active (B cells, NK cells, and TNFa all elevated)

I doubt I have some kind of infection... so what is my body attacking?

Only problem is I have chronic low IGG, so is that somehow hiding the target... I don't think anyone will know.

 

[Gingergrrl]

Only problem is I have chronic low IGG, so is that somehow hiding the target... I don't think anyone will know.

I don't have low IgG but my understanding (although I can't explain the science part ) is that someone can have both immune deficiency and autoimmunity at the same time.

I need to update my Rituximab thread after my phone consult w/my doctor yesterday in case anything in it is helpful for you or anyone else. Nothing I say will do him justice, b/c I don't take notes fast enough, but he said that if it was a virus/pathogen that triggered the B cells into autoimmunity, it is very possible (in my case) that the Ritux has now re-programmed the B cells so when I ultimately stop treatment, my new B cells will be healthy.

All we can do is keep stretching out the interval between Ritux doses and I will be at five months (when I do the next infusion in May) but he said that it usually takes 6-12 months for B cells to start coming back so we don't know yet if my remission is purely b/c we have kept my B cells at zero vs. if it will maintain once the B cells return, which would indicate a more robust remission.

I am not saying this whatsoever b/c I think Rituximab is the right treatment for you (and have no idea if your illness is B-cell driven?) but you had said in another thread that you had a "B cell proliferation" and that you were concerned about both autoimmunity and cancer (but I don't remember the outcome of that)? Did you ever get more info about it? Were your B cells elevated on the Lymphocyte Subset Panel or another test?

 

[Belbyr]

I am still awaiting all those tests. I check my Quest Labs account daily to see if there is any update.

If B cells are still elevated and those sub panels show issues, then I will probably go nuts in one sense knowing we found something that has shown back to back... And, go nuts in another sense of what the heck are they attacking...

 

[Gingergrrl]

I am still awaiting all those tests. I check my Quest Labs account daily to see if there is any update. If B cells are still elevated and those sub panels show issues, then I will probably go nuts in one sense knowing we found something that has shown back to back... And, go nuts in another sense of what the heck are they attacking...

Keep us posted and it will be interesting to see what the tests show.

 

[Belbyr]

This just came in and it doesn't look like anything crazy. Don't really know what to make of it, could be nothing and back to the drawing board again

 

[Gingergrrl]

This just came in and it doesn't look like anything crazy. Don't really know what to make of it, could be nothing and back to the drawing board again

I'm not totally sure what to make of it either and was curious what Dr. Klimas said (if you have talked to her yet)? Your Absolute CD19 cells are elevated but just slightly at 668 with the "normal" range cutting off at 660 so this seems minor. And your percentage of CD19 is just in the range at 29 (with 29 being the cut off). It is strange that she said you had "B cell proliferation" b/c this doesn't seem to show that (unless I am not understanding it). My B cells (CD19) were at zero the last time we tested but that is intentional b/c of Rituximab. I'll be doing the Lymphocyte Subset Panel at Quest some time in early April plus some other tests to see where things are now.

 

[Inara]

I find that in interesting in light of this new paper:
https://www.frontiersin.org/articles/10.3389/fnins.2019.00301/full

 

[Gingergrrl]

I find that in interesting in light of this new paper:
https://www.frontiersin.org/articles/10.3389/fnins.2019.00301/full

I saw that article in another thread but am not sure I understood it? I Googled Pro Convertase Furin to try to figure out what it is. Is it a marker of autoimmunity that is elevated in POTS patients?

 

[cyclamen]

I saw that article in another thread but am not sure I understood it? I Googled Pro Convertase Furin to try to figure out what it is. Is it a marker of autoimmunity that is elevated in POTS patients?

To the contrary. Lower levels might lead the way to peripheral Autoimunity - and the levelof this Furin is lower as longer POTS persists.

 

[Gingergrrl]

To the contrary. Lower levels might lead the way to peripheral Autoimunity - and the levelof this Furin is lower as longer POTS persists.

I'm glad I asked and rarely understand these things. So "Furin" is a marker that is lower in POTS patients? Does it always represent autoimmunity or can it mean different things?

 

[cyclamen]

I'm glad I asked and rarely understand these things. So "Furin" is a marker that is lower in POTS patients? Does it always represent autoimmunity or can it mean different things?

Don’t take my words for the truth, it is how I understood it.
For to say it is or will be a biomarker for autoimmune , POTS this one study was much to small , it has to get confirmed with more and bigger studies. It does not represent autoimmunity but increases the possibility.

 

[Gingergrrl]

Don’t take my words for the truth, it is how I understood it. For to say it is or will be a biomarker for autoimmune , POTS this one study was much to small , it has to get confirmed with more and bigger studies. It does not represent autoimmunity but increases the possibility.

Do you know if this is something that can be tested by a commercial lab or only in a research study at this point?

 

[cyclamen]

Do you know if this is something that can be tested by a commercial lab or only in a research study at this point?

Sorry Gingergirl, I can’t. But I expect more from this group of researchers in the future.

 

[oision27]

If your thinking autoimmunity what then do you think the antigen could be in your case?