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"Exercise Tests Suggest Autoimmunity..." Cort Johnson

Gingergrrl

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These antibodies are known or have been proposed to play a role in POTS, complex regional pain syndrome (CRPS) and CFS, and serious adverse reactions to HPV vaccination.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5209415/
Interesting article but I didn't see the link to the Cell Trend autoantibodies. Is that part mentioned in the article? Sorry for my confusion!

We will hopefully figure all this out in the next few years.
That would be amazing... and hopefully even sooner!

@Jonathan Edwards is it possible that the presence of these autoantibodies indicate a subgroup of an autoimmune subset (perhaps one more suspectible to POTS) and that the Rituximab responses (with varied autoantibody levels) represent the autoimmune subset (and diffrrent subgroups within)?
Am quoting you b/c I am curious about the answer as well. I believe there is an autoimmune subset (as part of ME/CFS or something that will eventually be it's own disease entity) and within this subset, are people who have these autoantibodies, who also have POTS, and who are potential responders to Rituximab.
 

Badpack

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My 2 cents to this, i got my antibodies checked at Celltrend, beta 1 and 2 positiv. Did a Rituximab trail and nothing changed for me. So even without those antibodies im still at a severe CFS state.
 

manasi12

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While not completely new, I find this hypothesis and the way Cort explains it really interesting. For me, the first warning signs I started to get at the gym (a few weeks before my decline into ME) were breathlessness, tachycardia and lightheadedness...It was like my heart & lungs were playing serious catch up, even after exercises I could easily tolerate normally.

I know that has been research into dysregulation of aceytlcholine and adrenergic signalling in the past with some evidence of autoantibodies.

I'm not going to speculate about that research, but for anyone interested, i've tried the following treatments with guidance from my POTS consultant:

Treatment one: Midodrine 2.5mg x 3 per day (Alpha Agonist, vasopressor).
My Anecdotal Experience: Seemed to help with OI in the beginning. Made headaches worse. Had bad reaction at 5mg. Overall, found very little benefit and stopped taking it.

Treatment two: Ivabradine (Lowers heart rate through different mechanism than beta blockers).
My Anecdotal Experience: Definitely lowered heart rate and made it feel very stable but made me feel very tired/lethargic so I stopped taking it.

Treatment three: Propranolol 10-20mg (beta blocker). I read here that low doses can help POTS. Alan Light also suggested that it may help in low doses.
My Anecdotal Experience: I definitely noticed that I felt less out of breath when walking/doing mild exercise on propranolol in the beginning, but it didn't seem to help me significantly enough to justify continuing it. The impact really was minimal.

*I've also tried Ivabradine/Midodrine in combination as well as Propranolol/Midodrine and neither helped me much.

So the puzzle for me still goes on, I have to say that Cort's article made a lot of sense to me, I hope we find some answers soon. Fluge & Mella's mention of Arginine a while back and the anecdotal reports about the benefits of NO2 Black/Isordil on here do make me think that for some of us, there is a problem with vasodilation/constriction.
Did you try propranol with fludrocortisone? If will help to tolerate b blockers effectively.
 

Gingergrrl

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My 2 cents to this, i got my antibodies checked at Celltrend, beta 1 and 2 positiv. Did a Rituximab trail and nothing changed for me. So even without those antibodies im still at a severe CFS state.
@Badpack I am so sorry to hear this! Did you do Rituximab in the US or at Kolibri (or somewhere else)? What were your main symptoms pre and post Ritux?

Did you try propranol with fludrocortisone? If will help to tolerate b blockers effectively.
I'm not sure who this is addressed to but I have done well with a beta blocker (Atenolol) for POTS since 2013 but I did not tolerate Florinef (fludrocortisone) whatsoever. It's interesting how different we all are.
 

Badpack

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Im from Germany and did it here. Main symptoms, well, brain fog, PEM, POTS, a lot of cardiac problems. 90% house bound, 50% bed bound. Cant go shopping for myself anymore sadly. And after Rituximab, nothing changed at all. Like really nothing at all. As if i have never done it. Not better nor worse. After this i tried Sirolimus because i thought maybe the T-cells are the main problem (blood tests showed a lot of T-memory cells) But after a month of 2mg daily i stoped, because again, nothing changed at all.
 

drob31

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There are lots of treatments for autoimmune disease and in the last ten years we have identified treatments that keep people completely well for many autoimmune diseases. Some autoimmune diseases, like immune thrombocytopenia quite often go into permanent remission and more often after treatment. Lupus frequently settles after an initial stormy period and with current drugs getting lupus patients staying well until the disease fades away (as it often does in mid life) is a very achievable objective. There will be further major advances over th next few years.
Can you tell me what treatments these are, for Lupus or for MCTD?
 

HelloHere

P.o.t.s, brugada,and now high Tsh or ME/CFS?
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Finally, some hope!

After deabilitating fatigue struck in 2012, the worsening of my condition these last two years or so has mostly been related to the autonomic nervous system, i.e. POTS, O.I., Dysautonomia.

Could a rampant onset of autoimmune reactions in the body targetting the ANS, be due to a chsin if events like; taking antibiotics, causing dysbiosis and yeast, leading to a leaky gut, with LPS and other foreign substances entering blood/lymph system, finally causing autoimmune reactions. At least for each round of antibiotics (2000, 2007, 2012) my health got worse, espec. wrt fatigue. Or is it more likely that a virus is the trigger?

@Hip and others..would the ANS be permanently damaged? Or are there ways to improve it.."repair" it?

Are there any measures I could take on my own to reduce these ongoing autoimmune processes? Even if I live in Norway, I have no hope of getting access to Rituximab treatment any time soon..

> autoantibodies to acetylcholine

Where can one get this tested?

Thanks @Cort for making this available.
My own experience: inguinal hernia repairs (both side a year apart 2015+2016 ..3 months,in 2016, diagnosed with COPD. I work somewhat a lot ,coffee,nights...unsafe . During that time I m getting some symptoms ,I do take some inhalers and one or two times emergency because of heart palp. I remember a night heart pain got really bad, anyway third time I m having an EKG this EKG is a mess..hospital 4 days..BRUGADA type 3 (long QT/(SUDS). Ho...talking about viral or not....hey here r the news or no news .coincidence?: a month before these palpitations I had a flu+pneumonia shot.....well