CFS, POTS, OH: treatment for adrenergic & muscarinic receptor antibodies

[Gingergrrl]

Bodden did the treatment 2012. I don't believe that the antibody tests were available at this time.

Thanks and I was just curious if he had been tested for any autoantibodies (not just Cell Trend) or if he had evidence that his illness was autoimmune based prior to trying Ritux.

How much did you pay for the immunglobuline i.v.?
What about immunoadsorption?

The IVIG was covered by my insurance for ten months (with six months of it being high dose IVIG). My co-pay per cycle was around $300 to $350 (not sure why it varied) which was not too bad since each cycle was about $50K (if I did not have insurance). I have never done immunoadsorption (or plasmapheresis as it is called in the US) and have no idea what it might cost. My doctors had no experience with it and said no and both recommended high dose IVIG for me (and now we are appealing the Ritux denial and trying to get additional IVIG while we are waiting).

 

[JollyRoger]

Wow ...really cool that your insurance pays for this treatment.
In Germany you have to pay all the treatments because cfs is just "psychosomatic".
50.000... impossible for someone like me.

If I just could have aids or cancer..... it would be so easy!!

 

[Gingergrrl]

Wow ...really cool that your insurance pays for this treatment.
In Germany you have to pay all the treatments because cfs is just "psychosomatic".
50.000... impossible for someone like me.

$50K is what the infusion center charges my insurance but is NOT what I paid and this is beyond my wildest dreams. I just had to pay the approx $300 co-pay each cycle which is doable for me. I am very grateful my insurance paid for the IVIG and we did not ever give them a CFS diagnosis b/c we no longer believe it is my correct diagnosis vs. Autoimmune POTS, MCAS, and autoimmune disease in general from all these freakin autoantibodies wreaking chaos in my body.

 

[JollyRoger]

So you have no PEM, muscle pain, brain fog and all the weird cfs stuff?
Did they misdiagnose you with cfs?

 

[Gingergrrl]

So you have no PEM, muscle pain, brain fog and all the weird cfs stuff? Did they misdiagnose you with cfs?

I do have muscle pain predominantly in my neck, right arm, and calves. But I do not have PEM or brain fog. I now believe that I was initially misdiagnosed with CFS by my PCP (GP) in 2013 although it made sense b/c I had just had severe mono (glandular fever) in 2012 and my EBV titers were off the charts. I believed without question that CFS was my diagnosis for about 2-3 yrs.

But the level of muscle weakness and breathing weakness that I experienced, along with significant POTS on two TTT, kept leading in a different direction. I reached the point that my arms were too weak to open a bottle of water or my front door and used wheelchair 24/7 since Oct 2014. Don't want to sidetrack this thread but when we discovered I had eleven autoantibodies, it shifted how my doctor and I viewed my illness toward a B-Cell autoantibody dependent disease vs. classic CFS (although there is of course some overlap).

 

[JollyRoger]

So I my opinion as a layman your changes are very high for a remission.
Good luck!!!

 

[Gingergrrl]

So I my opinion as a layman your changes are very high for a remission. Good luck!!!

I believe anything is possible now since my MCAS went into remission after almost killing me in 2015. But I only believe this after experiencing improvement from high dose IVIG. I do not believe that I would have randomly had these improvements without the IVIG and I do not know if they will be sustainable long-term without additional IVIG or the opportunity to try Ritux. Thank you for the good wishes and I wish you the best as well. Your case is very interesting to me and I hope you will continue to post updates.

 

[JollyRoger]

Thank you....
I have the opportunity to try the immunoadsorption but I'm scared of a big crash.
What if its a virus thing and I suppress my immune system?
I have to do more research and maybe some tests to be sure.
My CD57 for example is very low and that's an indicator for a chronic infection ....

Had you other autoimmune diseases before pots?
Like Reynaud?

I had the raynaud diagnosis ten years prior cfs and raynaud is often a forerunner of autoimmune diseases...

 

[kangaSue]

I made the test....
I'm positive for 2 antibodies...
BBut rituximab as treatment?? It can make so much damage if it's the wrong treatment.... like olaf bodden, the German football player.

I don't think the adrenergic and muscarinic antibodies are pathogenic so I wouldn't rush into trying rituximab for these until more is known about there function.

 

[Gingergrrl]

I don't think the adrenergic and muscarinic antibodies are pathogenic so I wouldn't rush into trying rituximab for these until more is known about there function.

KS, I was curious (separate from anything to do with Rituximab) why you feel the beta adrenergic and anti muscarinic autoantibodies are not pathogenic? My doctor felt they contribute to my POTS and muscle weakness (in addition to other auto-antibodies and factors in my case) but does not consider them benign. I value your opinion and would love to hear more!

 

[kangaSue]

KS, I was curious (separate from anything to do with Rituximab) why you feel the beta adrenergic and anti muscarinic autoantibodies are not pathogenic? My doctor felt they contribute to my POTS and muscle weakness (in addition to other auto-antibodies and factors in my case) but does not consider them benign. I value your opinion and would love to hear more!

I think it was Jonathon Edwards that made this comment in one of the threads about antibodies but I can't recall which thread it was. He was of the opinion that it could just be a marker of something out of kilter, similar to an elevated level of ANA not being specific for anything and just being an indication of inflammation.

If I'm remembering it correctly, only antibodies to direct ion channels (channelopathies) present a primary problem. Nicotonic acetylcholine receptors are directly linked to an ion channel but muscarinic acetylcholine and adrenergic receptors use a second messenger pathway (classes of G-protein coupled receptors)

 

[adreno]

From what I've seen so far, just about everyone seems to be testing positive for these antibodies. That makes me somewhat skeptical that this test is diagnostic.

 

[Gingergrrl]

From what I've seen so far, just about everyone seems to be testing positive for these antibodies. That makes me somewhat skeptical that this test is diagnostic.

I wanted that to be the case but one of my closest friends from PR (who no longer posts) did the test and tested negative on all nine.

Everyone else I've talked to on PR tested positive for 2-5 of them. I am the only person who tested positive for seven of the nine (that I know of) so my doctor re-ran the test w/a blood sample they already had from me (that was properly stored) and Cell Trend did not know it was me and I tested positive for the same seven of nine on the second go-round.

I have no idea what it really means but I know Dr. Heidecke and Dr. Scheibenbogen (as well as my doctor) view the results as significant. If I did not also have the calcium channel autoantibodies and a few others, I might dismiss it all too but something tells me it is real and plays a big role in my case.

 

[sb4]

Well I took the test and came negative with all 7...

 

[Gingergrrl]

Well I took the test and came negative with all 7...

That's right and I had forgotten about that when I posted. My friend who I was referring to (who no longer posts) did the full testing and was negative on all nine of the Cell Trend autoantibodies. He remains very ill but his case is not based on autoimmunity like mine so I do believe that these tests are picking up on something real.

 

[Learner1]

What about immunoadsorption?

I saw this in the studies. Is this something that's actually done anywhere? Everything I saw said more studies need to be done, which makes me think it would be unlikely to be covered by insurance...or am I missing something?

 

[smtl]

I'm not sure if it's a "red flag". I've tried to contact one doctor from the list. His answer was:

A short answer
I dont believe in the Celltrend results!!
They cannot reproduce their results.

--
Priv.Doz. Dr.med. Wilfried P. Bieger
Privatpraxis – FA Labordiagnostik
Klinische Immunologie –Infektionen
Stressmedizin – Neuroendokrinologie
Augustenstrasse 10 Bavariahaus
80333 München

Just letting you know

 

[Learner1]

My doctors have taken the tests quite seriously and seem to be successful in treating patients based on their results.

One doctor's dismissal of something doesn't worry me as I've seen many doctors dismiss perfectly useful labs...

However, if there were a whole bunch saying the same thing and published research, I'd take it more seriously.

 

[Gingergrrl]

My doctors have taken the tests quite seriously and seem to be successful in treating patients based on their results. One doctor's dismissal of something doesn't worry me as I've seen many doctors dismiss perfectly useful labs... However, if there were a whole bunch saying the same thing and published research, I'd take it more seriously.

Agree with every word

 

[smtl]

I didn't say I don't trust the results It was just strange that a doctor mentioned in first post by Lolinda made such a reply, so, I wanted to share it with you. As I came back positive for 11/11 of the autoantibodies, I've tried to contact the doctors mentioned in the initial post of this thread.