Trouble understanding the Acetylcholine Antibodies thing

Gingergrrl

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I now got tested for the autoantibodies at celltrend and I also took part in a clinical trial for POTS autoantibodies.
Hi Malea, I don't think I've talked to you before and welcome to the board. I was curious if you could say more about the clinical trial that you participated in for POTS?

I will try to test the considering autoantibodies for that, but I was told that 50% of the people with AGG are seronegative. So, a negative result would not mean much.
I have a friend who tested positive for AAG autoantibodies which got her approved for IVIG (so it might be worth testing if you have the opportunity). I am negative for that autoantibody. (I have not re-read this thread in case I already mentioned that above)!

Back to the POTS-autoantibodies, I have a doctor who would be willing to try medication for the autoantibodies which unfortunately doesn‘t include IVIG. Right now standing more than 10-20 seconds is nearly impossible for me and I additionally wonder if the autoantibodies-thing is triggering my severe MCAS.
What happens when you try to stand for more than 10-20 seconds? I am curious how similar you are to where I was pre-treatment. I could only stand for about 30 seconds max and this week is the first time since Oct 2014 that I left my home without a wheelchair.

Do you get shortness of breath, tachycardia, chest pain, etc, with standing/walking or other symptoms? I also had extremely severe MCAS with anaphylaxis (pre-treatment) and I know there is a proven connection between POTS and MCAS even though I cannot explain what it is.

I first thought of an agonist for the alpha1-blocker oder an antagonist for the beta2. Like Midodrine or Proponalol. (Which have reasons against them... like my cyanotic fingers which could be a problem with Midodrine. Or the Mcas, for which my diagnosing doctor once told me that betablockers are a bad idea because of triggering anaphylaxis). I even thought about trying Mestinon.
We are all different so take this with a grain of salt but Midodrine and Atenolol are both extremely helpful for me. My MCAS specialist has no concerns about my low dose of Atenolol triggering a reaction and it never has. On the other hand, I did not tolerate Mestinon at even 1/8th of a pill (when in theory it should have been a good med for me).

My doctor prefers to try Florinef. I was thinking that something that would work against the blocking/activation process of the autoantibodies would help me more. Which, in my understanding, Florinef primarily wouldn’t do.
I also did not tolerate Florinef but attempted it for several months in 2014. It gave me severe headaches and did not help my symptoms whatsoever.

But now I‘ve read that Florinef also has little glucocorticoid effects. Could that be indirectly helpful with the autoantibodies?
I have no idea and am not sure of any connection between Florinef and autoantibodies? (That doesn't mean that there isn't one, I just hadn't heard of it).
 

Malea

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Thanks @Gingergrrl for the welcome :)

I havn‘t figured out yet how to separate quotes, so its gonna be one longer sequence from me.


Unfortunately I don‘t know very much about the clinical trial. There‘s nothing „official“ to be found about it, I just heard from it from another patient. I think they are originally looking for a connection between the hpv vaccination and POTS. But I could take part of it without ever having that vaccination. Unfortunately I must say, I‘m a littlebit suspicious about that trial because everyone I heard of had the same pattern of positive autoantibodies there (beta2, muscarineric2), so I’m not sure if I can really recommend getting tested there. But I don‘t know how they test in detail and didn‘t have the energy to contact someone there to find out, so I can’t really make myself an opinion about it.


My main symptoms of trying to stand up are nausea, dizziness, irritation, even panic sometimes. Sometimes I can be quite absent too, not really being able to see clearly or talk anymore.

I always have a shortness of breath, so I don‘t think its worse while standing up. But I will watch out for that.


My MCAS is really bad. I read a comment from you on another thread about how you struggled with your MCAS in the past and it really reminded me of my situation.
I‘m reacting to ...everything. Even all the stuff that could be helpful. And of course nearly all foods, medications, smells and so on. Combined with my noise and light sensitivity the saying „allergic to life“ totally fits my current situation.


It‘s good to hear that your MCAS specialist is fine about a low-dose betablocker. And thanks for sharing your experience with the different medications. Do you have a theory why you reacted so badly to mestinon? (You mentioned that earlier)
 

Gingergrrl

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Unfortunately I don‘t know very much about the clinical trial... Unfortunately I must say, I‘m a little bit suspicious about that trial because everyone I heard of had the same pattern of positive autoantibodies there (beta2, muscarineric2), so I’m not sure if I can really recommend getting tested there. But I don‘t know how they test in detail and didn‘t have the energy to contact someone there to find out, so I can’t really make myself an opinion about it.
No worries and I was just curious what the trial involved. Please don't even waste your time trying to look further!

My main symptoms of trying to stand up are nausea, dizziness, irritation, even panic sometimes. Sometimes I can be quite absent too, not really being able to see clearly or talk anymore. I always have a shortness of breath, so I don‘t think its worse while standing up. But I will watch out for that.
Our symptoms sound different and my shortness of breath and POTS reactions were triggered by standing/walking although this has FINALLY improved with treatment. The Atenolol controls the tachycardia itself but it was not until I started treating the autoimmunity long-term (in my case) that everything began to change.

My MCAS is really bad. I read a comment from you on another thread about how you struggled with your MCAS in the past and it really reminded me of my situation. I‘m reacting to ... everything. Even all the stuff that could be helpful. And of course nearly all foods, medications, smells and so on. Combined with my noise and light sensitivity the saying „allergic to life“ totally fits my current situation.
Are you on any kind of meds or protocol for MCAS?

It‘s good to hear that your MCAS specialist is fine about a low-dose betablocker. And thanks for sharing your experience with the different medications. Do you have a theory why you reacted so badly to mestinon? (You mentioned that earlier)
Please don't take what he recommended for me as medical advise for you but he felt that Atenolol was the best POTS med for me (since Florinef, Mestinon, CA+ Channel Blocker, and other stuff did not work for me) and it was unbearable having my HR in the 160's and 170's every day without it. I take a very low dose and have never had any problem with it. But if your doctor feels otherwise, please listen to him or her b/c each case is unique!

Re: Mestinon, it gave me respiratory depression and my theory (that a friend explained to me who has a strong science background) is that I have a razor thin margin where I am okay with meds that are both cholinergic or anti-cholinergic (b/c I also get respiratory depression from Benadryl). I can tolerate 25 mg of IV Benadryl as a pre-med every 3-months for treatment, and would also take it in an emergency if no alternative, but it is not a med that I could tolerate on an ongoing basis like many people can.
 
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Learner1

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@Malea I have similar POTS autoantibodies and autoimmune MCAS. I see the same ME/CFS specialist as @Gingergrrl, though she and I are different in many ways. I also see a good dysautomis specialist.

The ME/CFS doctor put me on IVIG, the highest dose he could for immunodeficiency, which I have, at .75g/kg, every3 weeks since last August.

It has cut my POTS symptoms to 2/3 of what they were, though my MCAS gets a bit worse during 4-5 days around IVIG but I am controlling it with MASs meds, quercetin, and curcumin which are working well.

He also suggested propranolol to deal with my POTS symptoms, while the dysautonomia specialist recommended pyridostigmine..I trialled both, individually, over the past 2 months, and found the pyridostigmine worked a little better for the actual POTS symptoms but spiked my blood pressure to a steady 157/95, while the propranolol helped the POTS a little less, but dropped my blood pressure to as low as 88/55.

My new marching orders are to proceed on low doses of both, while monitoring my symptoms and BP to find a good dosing and timing that works.

The dysautonomia specialist explained my rapid heart beat wasn't allowing my heart to fill up with blood which caused hypoperfusuon in my brain, which is why I get dizzy and pssed out on the TTT. The drugs should help. He also explained the pyridostigmine should increase acetylcholine, the opposite of an anticholinergenic drug.

I found the attached recent case study helpful, as it matches my MCAS and POTS problems and treatment eell, except I don't have SIBO and she was on double the dose of IVIG.

My doc is having micro mote testing in hopes of finding something for my insurance to ok increasing my IVIG dose and he may at some point want to try Rituximab, although we need to be sure my infections are gone, which is looking good at the moment, and I want to evaluate the latest knowledge and understand the risks before going that direction. I'm also going to check out stem cell transplant, to see if that might have any benefit without too much risk.

At any rate, I feel the IVIG has been incredibly helpful and offers s better POTS solution rather than endless POTS drugs, and I think it will eventually help my MCAS.
 

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Gingergrrl

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@Gingergrrl If you're interested, Dr Driscoll is looking for people with idiopathic POTS for a study she is doing. http://prettyill.com/
Thanks and I just looked at the link but she is in Texas so I don't think it would work. I have also been labeled with "Autoimmune POTS" by all my doctors (vs. idiopathic) and not sure if this would matter for the study either? And lastly, my POTS is finally better now with my treatments and not sure if this would matter?!
 

kangaSue

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Thanks and I just looked at the link but she is in Texas so I don't think it would work. I have also been labeled with "Autoimmune POTS" by all my doctors (vs. idiopathic) and not sure if this would matter for the study either? And lastly, my POTS is finally better now with my treatments and not sure if this would matter?!
No worries, just a thought.
 

Malea

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Are you on any kind of meds or protocol for MCAS?
I'm sadly not tolerating any MCAS medication. I tried 4 different antihistamines and even with 1/10 of the lowest dose it just completely stopped bowel movements. Quite scary. Cromolyn gave me even more nausea. And my last try to calm the mast cells (which I'm still on and slowly trying to withdrawal) was lorazepam, which gave (and still gives me) really bad acid reflux. My theory is that the sphincter of my esophagus is not really working under lorazepam, which might be because of the anticholinergic effects, too.


Oh and I didn‘t want to take your doctor's opinion as medical advice for me. I was just happy to hear another opinion. (And it is not my current doctor who is against trying a beta-blocker, but the doctor who once diagnosed me with mcas. But he didn't know anything about POTS and/or autoimmune stuff and only focused on mast cell things.)
 

Gingergrrl

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I'm sadly not tolerating any MCAS medication.
I forgot, have you tried Ketotefin (mast cell stabilizer)?

Oh and I didn‘t want to take your doctor's opinion as medical advice for me. I was just happy to hear another opinion. (And it is not my current doctor who is against trying a beta-blocker, but the doctor who once diagnosed me with mcas. But he didn't know anything about POTS and/or autoimmune stuff and only focused on mast cell things.)
I didn't think you would take it as medical advise but always try to be careful b/c each person is so unique in what helps them with both POTS and MCAS. For me, the beta blocker, Atenolol, is one of the most helpful meds that I take and now assume it will be life-long. I no longer really need the MCAS meds but still take one set per day to be safe.
 

Learner1

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@Gingergrrl What does the atenolol do for you, specifically? I'm on propranolol, bit it wears off every 6 hours or so, so its a bit of a roller coaster. Does the atenolol just last longer or is there more to it?
 

Gingergrrl

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@Gingergrrl What does the atenolol do for you, specifically? I'm on propranolol, bit it wears off every 6 hours or so, so its a bit of a roller coaster. Does the atenolol just last longer or is there more to it?
It lasts 12 hours and without it, my HR goes into the 160's (or higher). It is the only med that controls the tachycardia and has absolutely zero side effects (for me).
 

Gingergrrl

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Thanks, I think I will be asking about it soon! ;)
I don't know if it will be as helpful for you as it is for me (but it is always worth asking your doctor). The other thing I forgot to mention in my reply is that Atenolol is a "cardio selective" beta-blocker vs. Propranolol is more of a generic beta blocker given for many different reasons and affects other parts of the body vs. blocking adrenaline to the heart.
 

Gingergrrl

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I believe propranolol crosses the BBB which can be good or bad, depending on one's needs.
I've never actually taken Propranolol and the only other beta blocker that I tried for POTS (prior to Atenolol back in 2013) was Metoprolol. My cardio at the time switched me to Atenolol and I think part of the reason had to do with it not crossing the blood brain barrier (if I remember correctly which I may not). I think the Metoprolol was giving me insomnia, although I am not certain. In any case, my former cardio switched me and the Atenolol worked great with no side effects and it lasted for 12 hours which the Metoprolol did not.
 

Malea

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@Malea I have similar POTS autoantibodies and autoimmune MCAS.

Hi Learner, thanks a lot for your answer and the study!

What does „autoimmune MCAS“ mean? That the MCAS is triggered by other autoimmune processes in the body?


You wrote that you‘re taking curcumin for the MCAS... I‘m thinking about starting it, too. Are you taking a liposomal form of it?




That both your experiences (despite of the severe MCAS) are good with IVIG makes me really think if this could be a manageable option for me one day. I will try to talk about that with my doctor. If there is a way it will definitely be a long one, because as far as I know insurance trys everything to not cover it.
 

Learner1

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Hi Learner, thanks a lot for your answer and the study!
You are quite welcome!
What does „autoimmune MCAS“ mean? That the MCAS is triggered by other autoimmune processes in the body?
From what I understand, some nsst cell disease is linked to a mutation on the KIT gene. Other cases can be autoimmune - triggered by something in the environment, like mold or a virus, like Epstein Barr, which is notorious for causing autoimmunity.
You wrote that you‘re taking curcumin for the MCAS... I‘m thinking about starting it, too. Are you taking a liposomal form of it?
I'm taking Thorne Meriva and I occasionally get IVs of it.
That both your experiences (despite of the severe MCAS) are good with IVIG makes me really think if this could be a manageable option for me one day. I will try to talk about that with my doctor. If there is a way it will definitely be a long one, because as far as I know insurance trys everything to not cover it.
My insurance is covering it. It depends on what case your doctor can make with ICD10 codes and meeting your insurance company's policy, and a peer to peer consult, if necessary.
 

Gingergrrl

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What does „autoimmune MCAS“ mean? That the MCAS is triggered by other autoimmune processes in the body?
I am not sure if this is helpful, and different doctors use different terms, but my MCAS doctor said that only Mastocytosis is a primary disease (which I do not have) vs. MCAS is always secondary to something else (like an environmental trigger, a virus like EBV, autoimmunity, etc). But there are no specific autoantibodies (at least at this time) that correlate with MCAS itself.

If there is a way it will definitely be a long one, because as far as I know insurance trys everything to not cover it.
My insurance tried everything humanly possible to deny me but we fought and appealed. It's been an ongoing battle with my insurance but for me, it was worth the fight.
 

Mel9

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I'm sadly not tolerating any MCAS medication. I tried 4 different antihistamines and even with 1/10 of the lowest dose it just completely stopped bowel movements. Quite scary. Cromolyn gave me even more nausea. And my last try to calm the mast cells (which I'm still on and slowly trying to withdrawal) was lorazepam, which gave (and still gives me) really bad acid reflux. My theory is that the sphincter of my esophagus is not really working under lorazepam, which might be because of the anticholinergic effects, too.


Oh and I didn‘t want to take your doctor's opinion as medical advice for me. I was just happy to hear another opinion. (And it is not my current doctor who is against trying a beta-blocker, but the doctor who once diagnosed me with mcas. But he didn't know anything about POTS and/or autoimmune stuff and only focused on mast cell things.)

I have only just seen this thread. How are you now @Malea?

I recently started Mestinon and it stops my POTS and PEM, but only if I take it every three hours. (I am in trouble if I forget.)
 

Malea

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I have only just seen this thread. How are you now @Malea?

I recently started Mestinon and it stops my POTS and PEM, but only if I take it every three hours. (I am in trouble if I forget.)
I‘m still a littlebit in love with this thread because it had all these great explanations about the ABs when I was understanding literally nothing about them. I‘ve re-read it a lot of times.

Unfortunately I‘m not doing better. POTS is not my biggest problem right now and I worsened after I tried out POTS medication. Main problem is my massive intolerances to foods, supplements, medications, smells.

Glad to hear that Mestinon is helping a bit.