Autoimmunity to Choline/Acetylcholine Question

[Jwarrior77]

After doing lots of research I've noticed that some people with POTS potentially have anti-muscarinic Acetylcholine receptor antibodies in their blood. This can cause a lot of symptoms associated with POTS but most notably dry eye and dry mouth. They are also finding that people with Sjogrens could have these antibodies as well.

Some people also have Autoimmune Autonomic Ganglionapathy (AAG) which is a different disorder but causes many POTS symptoms and could also be an underlying cause of POTS. To the best of my knowledge AAG is where your body produces antibodies that block acetylcholine receptors in the neuron - neuron junction. 

So basically Acetylcholine is being blocked by not being able to attach to the receptors which will then cause a whole variety of problems in the body in which Acetylcholine is needed to work.

I'm not a doctor or scientist so the info above may be slightly inaccurate to how it was phrased.

Anyways my question would be this - 

Would taking Choline/Acetylcholine increasing supplements provide a beneficial or negative effect to people with these problems? Would the body have an autoimmune reaction worsening symptoms if taking these supplements? No effect at all? Or a beneficial outcome with more available acetylcholine being able to attach to unaffected receptors more efficiently? 

Supplement Examples: CDP Choline is a supplement that increases regular Choline in the body. Many people take it for nutritional and nootropic properties. 

Alpha Glycerylphosphorylcholine (Alpha GPC)  is a supplement that increases the production of Acetylcholine in the brain. Many people also take it for nootropic values.

Huperzine A is a cholinesterase inhibitor very similar to Mestinon which makes Acetylcholine last longer in brain and not break down so easily.

My story: During summer when my symptoms were less I came across POTS blogs showing studies that many people with POTS were deficient in Choline, Acetylcholine, and Betaine (which is a product of Choline). It was suggested to take some of the supplements above to restore better levels. I decided to get CDP choline, Alpha GPC, and Betaine HCL. 

I first tried CDP choline for a little bit and surprisingly it helped with an increase of saliva production and an overall feeling of wellness that I hadn't had before I got sick. No real other effects noticed however. I then tried Alpha GPC and this had the most notable effects. It had a very noticeable mental stimulation effect that was somewhat powerful. It virtually took away any brain fog I experienced. It also increased salivation and a little bit of tear production. It was pretty powerful so I didn't over do it. I then tried Betaine HCL which increases stomach acid and helps digestion. Not too many effects other than it helped decrease bloating I guess.

*These were all taken separately and on different days*

Anyways I took them on and off and noticed some symptom improvement. However I decided to stop taking them as you shouldn't over do it with choline supplements. 

One day after stopping the supplements for a while I was pretty symptomatic and was feeling pretty horrible. I hadn't slept all night, was anxious, low blood pressure, elevated hr when standing up of course, and just a general feeling of death. It was early morning and I was trying to get some sleep. Out of desperation I took a CDP choline considering it helped me in the past thinking I might get better. (You shouldn't take choline when going to sleep anyways as it can be stimulating but I really didn't think it through).

After about 5 minutes my HR went into the 160s, Hypertension and started involuntarily shaking. My mom took me to the ER as I was convinced I was dying. It was horrible. At the ER I was flushing in my face and had patches of redness all over my torso. We explained I had POTS and showed them the supplement bottle I took. They didn't know what to do. It wasn't an allergic reaction as I had no anaphalaxis and no itching. They thought it was anxiety OF COURSE even though my muscles were involuntarily shaking all over. My body eventually calmed down many hours later. 

Ever since then I have been afraid to take Choline , Alpha GPC , and Betaine even though I had perfectly fine reactions in the past. This is what made me think of the antibodies question above. Could that have caused this reaction? I wouldn't know if I do have the antibodies as I would have to go to the Mayo Clinic to try to get tested and that is impossible at the moment. 

I'm starting to doubt the antibodies are the cause as I had an almost identical reaction to taking a Xanax on an empty stomach after not sleeping all night. Only it was much worse when taking the Xanax. Now I'm afraid of taking Xanax when it should help me of all things.

I think my central nervous system went into shock after taking something that effects it when not sleeping or eating anything. It probably overreacted with an influx of adrenaline and nor-epinephrine. 

Anyways I'm rambling now and I'm sorry for this post being so long. If anybody has any insight to these questions it would be extremely appreciated. Thanks for spending the time to read this. 

 

[Guest KiminOrlando]

I think your premise is correct.  I have an autoimmune component. I also have Mixed Connective Tissue disease which is a nebulous term for 'unknown autoimmune', but have also tested positive for lupus and Rheumatoid arthritis. When I am on immunosuppressants like methotrexate, biologics or JAKs, my dysautonomia gets better.  When I have to stop or decrease them, dysautonomia gets worse.  They haven't been able to tie in a specific antibody. I also have the dry eye/mouth thing, but didn't test positive for Sjogren's either in blood or biopsy. The doctor said they would have put money on that biopsy being positive. 

My doctor said we need to be careful when we take additional neurotransmitters. Basically we are flooding the zone. My receptors are damaged so an example is they typically pick up 1 in 20 signals.  Flooding the zone can work because you throw more at it, but then suddenly it starts picking up 1 in 3 and you are in trouble. It sounds like you did something to make your receptors more reliable, then threw too much at them. The question is what.

Also, it is possible to get a Mayo blood test without actually going to Mayo. My doctor drew my blood and sent it out.

Keep working with this. I think one of us is going to stumble upon something. I am shocked how much better I feel on melatonin. I don't sleep, but I'm not vibrating and jumping out of my skin while being so tired I just want to collapse into a lump on the floor.

[Jwarrior77]

Thanks for responding. Your theory on flooding the zone also makes sense. I want to try taking Alpha GPC again as it really seemed to help it's just I have a paranoia about what could happen now. I'm probably going to end up taking low doses with food to see what happens later on. I also get a buzzing/vibrating feeling all throughout my body sometimes which is super uncomfortable. I haven't taken melatonin but I've heard it's helped some people. I'll have to look more about the blood tests and ask my doctor. I know that AAG can be ordered but it's pretty uncommon to do so. Testing for muscarinic acetylcholine antibodies is much less common and I'm pretty sure the only place that does it is some company out of Germany that I've heard people on this forum talk about. It sucks that testing for these autoimmune conditions isn't widespread enough yet that your average rheumatologist could just do a test for.  Anyways we'll see. 

[MTRJ75]

This is a tough one. My autoimmune problems (likely Sjogren's) showed up a few years before the dysautonomia, though I never tested for anything on bloodwork. 

There certainly seems to be some merit to the AI/Dysautonomia connection from a lot of my recent readings, but that would also seem to suggest that helping the immune system would help the ANS. 

I've spent the last few years taking immaculate care of my immune system, such that all of my most recent blood work in just about every area was great last year and I hadn't actually had an illness in several years despite everything else that's being dealt with daily (although I had my first infection in several years last month). 

So the struggle for me is that while my immune system seems more balanced, the autonomic symptoms get worse and that shouldn't be the case if it's AI driven. 

I'm not sure I've ever been specifically tested for the anti-bodies you mentioned though. I'm going to have to ask about anti-muscarinic Acetylcholine receptor antibodies next time I see a doctor because on some level, I believe the dryness may be the cause of a good chunk of my problems. 

[Guest KiminOrlando]

@MTRJ75

Autoimmune disease doesn't mean you are sick a lot. You really wouldn't know what your immune system is doing without constant bloodwork checking ANA and other stuff. Autoimmune disease means your immune system is either too strong or the right strength but misguided and attacking your body. It can attack your nervous system, your joints, your lungs, your heart, etc.  This is why suppressing my immune system helps my dysautonomia. If you are doing something to strengthen your immune system like echinacea or tumeric, then you are likely making your dysautonomia worse if it is indeed autoimmune.  

[MTRJ75]

1 hour ago, KiminOrlando said:

@MTRJ75

Autoimmune disease doesn't mean you are sick a lot. You really wouldn't know what your immune system is doing without constant bloodwork checking ANA and other stuff. Autoimmune disease means your immune system is either too strong or the right strength but misguided and attacking your body. It can attack your nervous system, your joints, your lungs, your heart, etc.  This is why suppressing my immune system helps my dysautonomia. If you are doing something to strengthen your immune system like echinacea or tumeric, then you are likely making your dysautonomia worse if it is indeed autoimmune.  

I realize this. It’s just ironic that I went from always being sick to never and my bloodwork continued to improve even as my symptomology continued to expand. It’s about balancing the immune system not strengthening it in a way that makes it more active. Straight suppression might more immediately alleviate some symptoms but there are obvious problems there too. Turmeric is anti inflammatory, which would be a good thing.

[Guest KiminOrlando]

Turmeric put a friend of mine in a full blown autoimmune crisis. Turmeric is very dangerous. It is more than just an anti-inflammatory. Just be careful if you have an autoimmune component and please be under the guidance of a licensed physician. 

[Jwarrior77]

@KiminOrlando That's so weird I've never heard people really having a bad reaction to turmeric. I've only heard good things on how it helps manage pain and keeps inflammation in the body down. I also take Turmeric for that reason. Hopefully it's only doing good and not bad. I'm probably going to research more on autoimmune conditions now.

[MTRJ75]

Of all the things doctors have directed me to put into my body in recent years, turmeric is probably the thing I've been least concerned about. 

[Jwarrior77]

Same. I'm not going to stress it as it has helped me in the past. I'm more worried about toxins, unhealthy lifestyle/diet to worsen this than good old turmeric. 

[Jresearchesitall]

Interesting conversation.

It does sound like you had cholinergic crisis (likely of nicotinic receptors). Whether that was due to reduced activity of Acetylcholinesterase, or autoimmune related damage to your receptors, over-stimulation of your receptors, or all of the above is what you would need to tease out.