Results of the German Cell Trend laboratory for POTS

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I have a1 and m4 antibodies and my dysautonomia specialist raised my dose of Mestinon to 60mg a day from 30. I am no longer dizzy and have trouble standing for periods of time. I'm not sure GWI patienrs are anything like me.

If you are really sensitive to tnings, do you also have MCAS?
Very interesting. Did you get the whole panel tested like I did? What were the numbers?

Also even if there are these antibodies I believe the root of the problem can still be in the neck and testing for craniocervical instability and similar condition s is important which I will do. MRI upright with flexion extension and rotation and viewed by neursurgeon familiar with the condition or neuroradiologist familiar with it.

The body may be creating these antibodies to compensate to block the receptors or confused. Everybody has them so the body produces them, but elevated shows malfunction.

I don't know if I have MCAS but very familiar with it and thought I might. No deadly reactions though.
 

Gingergrrl

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Thanks for such a detailed answer @Gingergrrl I’ll report back when I know more. Am trying new medications and getting new tests so it will take a little time to get this sorted out—where I am at and how best to proceed.
No problem and please keep us posted once you decide how to proceed with your treatment and best wishes to you in the process.

I don’t think I have had the two panels you mentioned last, but in the blur of testing, I might have missed something.
They are Mayo panels with very similar overlapping tests (DYS1 and PAVAL) so you really would not need both. They are testing for autoimmune dysautonomia and paraneoplastic autoantibodies. In my case, they were the turning point and it was really helpful to learn which autoantibodies I was positive for.

You can see my results login to see.
Wow, our results are similar except most of my numbers were in the 20's. I don't think I have seen any as high as yours in the 50's and wonder what that means!

So, as far as I'm concerned I have dysautonomia, or autoimmune dysautonomia
It definitely looks that way. "Autoimmune POTS" and "Autoimmune Dysautonomia" were at the core of my illness as well (with a few other additional bonuses :confused:)

I also have a prescription for Mestinon and Florinef.
I did not do well with either of those meds but we are all so different that this doesn't really mean anything.

Also even if there are these antibodies I believe the root of the problem can still be in the neck and testing for craniocervical instability and similar condition s is important which I will do.
I agree and don't think that those two issues are mutually exclusive at all.
 

Learner1

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Very interesting. Did you get the whole panel tested like I did? What were the numbers?
Yes. Much lower than yours, but I had signidivant POTS symptoms that have benefited hugely from treatments.

The body may be creating these antibodies to compensate to block the receptors or confused. Everybody has them so the body produces them, but elevated shows malfunction.
Amd malfunction can make us pretty miserable and put us at risk for serious complications.

I don't know if I have MCAS but very familiar with it and thought I might. No deadly reactions though.
MCAS doesn't have to provoke a deadly reaction to slowly destroy your life. It can slowly simmer away creating a myriad of symptoms. I believe it may have been a factor in my cancer. Worth looking into.
 

Pearshaped

...and then things went pearshaped.
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Hi everyone,
I see this is an old thread,but I'd be interested in how you guys are doing in 2020?

I get tested for these antibodies(again) and if positive my doctor wants me to try immune-adsoption and I am actually scared bec that would mean I have an appointment every 3days and that totally impossible for me.I am bedbound.

Have you ever heard of this treatment for these autoantibodies?
 

pattismith

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Hi everyone,
I see this is an old thread,but I'd be interested in how you guys are doing in 2020?

I get tested for these antibodies(again) and if positive my doctor wants me to try immune-adsoption and I am actually scared bec that would mean I have an appointment every 3days and that totally impossible for me.I am bedbound.

Have you ever heard of this treatment for these autoantibodies?
Nice that you find a doc interested into these antibodies. I am very positive to alpha 1, ETAR and AT1R, at risk for M3. Where is your doc located in Switzerland?
 

Pearshaped

...and then things went pearshaped.
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He doesn't offer this officially,but where he works(officially hes not a doctor yet) they have the gadgets,and he could convince his Boss(owner of the clinic)to try it if he finds more than 3 patients.
Adress:
Seegarten Klinik
Seestrasse 155A
8802 Kilchberg
office@sgk.swiss
They most definetely speak english.
costs are very high,if Im lucky its more or less 7500.-CHF
 

pibee

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Nice that you find a doc interested into these antibodies. I am very positive to alpha 1, ETAR and AT1R, at risk for M3. Where is your doc located in Switzerland?
just curious, do you have POTS?
are you negative for adrenergic ones? the study by Grubb said nobody tested positive for muscarinic if adrenergic werent positive, so it's interesting if you do.
or i guess you dont have POTS


edit: lol i see now you wrote adrenergic. interesting, i never heard anyone scoring positive who doesnt havee POTS ;) you probably have it without knowing about it, after IVIG my HR normalised for long time but i still had OI, and well, its' POTS.

In fact, you probably are aware of research saying that alpha1 from CellTrend is unreliable because it measures noradrenaline not only antibodies. I did antibodies with another researcher using bioassay , dr Wallukat, and i scored negative on alpha1, but positive on beta 2 and muscarinic2 (he didnt test other Muscarinic antibodies).
So maybe in fact if you score negative on beta you don't have POTS.
I was positive on 8/9 and beta 1 i scored 14.9 and 15 was positive, lol

after IVIG was positive for 3/9, and 1 borderline. And those 3 positives fell from 7x increased to max 2x.. so really fast and good response...
both times ETAR, AT1R were borderline

too bad IVIG woke up my absolutely symtpoms less Sjogren's sicca lol
i guess i got IVIG too late, with antibodies rising too much, and hormone shot after IVIG tirggered sicca.

another shitty thing is that you need IVIG nonstop to keep the remission.
Hope i find something that works long term and not live on IVIG, dont like freaking needles, to remidn you you're sick
But well, ... science is not really advanced more than IVIG... boring!
 
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pattismith

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just curious, do you have POTS?
are you negative for adrenergic ones? the study by Grubb said nobody tested positive for muscarinic if adrenergic werent positive, so it's interesting if you do.
or i guess you dont have POTS


edit: lol i see now you wrote adrenergic. interesting, i never heard anyone scoring positive who doesnt havee POTS ;) you probably have it without knowing about it, after IVIG my HR normalised for long time but i still had OI, and well, its' POTS.

In fact, you probably are aware of research saying that alpha1 from CellTrend is unreliable because it measures noradrenaline not only antibodies. I did antibodies with another researcher using bioassay , dr Wallukat, and i scored negative on alpha1, but positive on beta 2 and muscarinic2 (he didnt test other Muscarinic antibodies).
So maybe in fact if you score negative on beta you don't have POTS.
I was positive on 8/9 and beta 1 i scored 14.9 and 15 was positive, lol

after IVIG was positive for 3/9, and 1 borderline. And those 3 positives fell from 7x increased to max 2x.. so really fast and good response...
both times ETAR, AT1R were borderline

too bad IVIG woke up my absolutely symtpoms less Sjogren's sicca lol
i guess i got IVIG too late, with antibodies rising too much, and hormone shot after IVIG tirggered sicca.

another shitty thing is that you need IVIG nonstop to keep the remission.
Hope i find something that works long term and not live on IVIG, dont like freaking needles, to remidn you you're sick
But well, ... science is not really advanced more than IVIG... boring!
I tested:

AT1R 56 very positive
ETAR 64 very positive
Alpha 1R 51 very positive (i didn't know about false positivity for this one)
Alpha 2R 16.9 positive

all the other one are negative but Muscarinic M3R at risk

I don't have OI or POTS that I am aware of, but I do have some cardiovascular autonomic neuropathy (cardiac arrhythmia/ventricular extrasystoles and erythromelalgia like symptoms).
I also suffer symptoms of brain vascular autonomic alteration, but not sure how to call it if it doesn't fall in the OI/POTS basket...

Do you mean you developed Sicca syndrome after starting IVIG?
Did you get tested for Sjogren and SFN?
 
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I was tested last year from CellTrend
My results:
positive:
alpha 1-adrenergic
alpha 2 -adrenergic
beta 1 - adrenergic
m4 AChR quite high (41.9)

at risk:
m3 AChR
AT1R

M3 AChR antobodies may be connected with Sjogren Syndrome
https://www.ncbi.nlm.nih.gov/pubmed/23135882
Anti-M3 muscarinic acetylcholine receptor antibodies in patients with Sjögren's syndrome.
by Sumida et al.
...Sjögren's syndrome (SS) is an autoimmune disease that affects exocrine glands including salivary and lacrimal glands. Recently, autoantibodies against muscarinic acetylcholine receptor M3 (M3R) have been detected in serum from 9 to 100 % of patients with SS in addition to anti-SS-A and anti-SS-B antibodies. These observations suggest the possibility that anti-M3R antibodies could serve as a new diagnostic test in patients with SS. Some anti-M3R antibodies are directly responsible for salivary underproduction in patients with SS....
.
 

pibee

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I tested:

AT1R 56 very positive
ETAR 64 very positive
Alpha 1R 51 very positive (i didn't know about false positivity for this one)
Alpha 2R 16.9 positive

all the other one are negative but Muscarinic M3R at risk

I don't have OI or POTS that I am aware of, but I do have some cardiovascular autonomic neuropathy (cardiac arrhythmia/ventricular extrasystoles and erythromelalgia like symptoms).
I also suffer symptoms of brain vascular autonomic alteration, but not sure how to call it if it doesn't fall in the OI/POTS basket...

Do you mean you developed Sicca syndrome after starting IVIG?
Did you get tested for Sjogren and SFN?
There is research where it shows when they filther noradrenaline in blood , many become negative to alpha1.
Maybe other adrenergic too.
You're actually only one without POTS i've ever heard to test positvie and so high, one of highest results I've heard.

Well I believed I don't have POTS either, because My funcitoning was very high comparing to what you read online, with people being in wheelchairs and what not. But i did have long time OI, for example after 5-10 hours on my feet I tend to lay down , sitting drained me even more than standing because whne you sit your leg muscles dont compensate.
that was pretty much only POTS symptoms i had, besides brain fog and circadian rhythm disturbance.

I scored borderline on SSA for sjogrens and borderline on lip biopsy, no symptoms, and negative ultrasound. Basically very big stretch. Unfortunately even though IVIG completely shut down neuropsychiatric part of my disease, incl POTS, it kinda flared Mast cells in weeks post IVIG (i got first time feeling of hEDS too! ever! thankfully only few weeks as well felt joint moderate hypermobility, never before in my life), .. anyway, then combined with hormone shot, it activated Sjogrens 2 hours after shot.
so i think was IVIG flaring MCAS + hormone .. bam
i guess i had it subclinical before too... in events escalating years before as my POTS got worse from each round of antibiotic i took since 2014 for "Lyme"
I scored positive for Lyme too so maybe it was Lyme, but i have family history of Sjogrens so who knows, however my neuro symptoms are 30 yrs old, so life long, even as child i had dysautonomia symptoms and PANS (psychiatric), MCAS... it's hard to believe it can be caused by Sjogrens which came 30 yrs later.
More likely it's either nasty infection (next to genes) or MCAS...

IVIG works amazingly for me, i felt best in whole life 30 years, but it lasts so shortly, and obviously there is danger it can flare other things. :/

btw i am confused as POTS/neuropathies and Sjogrens don't even get worse or better from same treatments and triggers. Recently i took oregano oil which is some too heavy crap from Now Foods (avoid!) and it caused me sooo severe attack of neuropathies i got scared for a while it's large fiber too , etc, it caused worse POTS.
Sjogrens dryness didn't affect even 2%!
So i'm questioning theory that POTS is "just consequence" of Sjogrens.
 

pibee

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I was tested last year from CellTrend
My results:
positive:
alpha 1-adrenergic
alpha 2 -adrenergic
beta 1 - adrenergic
m4 AChR quite high (41.9)

at risk:
m3 AChR
AT1R

M3 AChR antobodies may be connected with Sjogren Syndrome
https://www.ncbi.nlm.nih.gov/pubmed/23135882
ya M3 jumped from 11 to 26 in 2017 to 2018 for me and in mid 2018 i started to have mild sicca and then in 2019 full blown after hormone+IVIG. In 2018 i received hormoens too so maybe that was advancing problem.

IVIG decreased all those antibodies drastically but I still struggle with sicca. Although not as severe as when it appeared, in beginning I got inflammation of every single gland that produces moisture like even in gut, bowels, throat, easophagus, eyes, lip (all those small glands were swollen even! which you dont even know you have), parotids, eyelid glands etc etc. all swolen and few weeks dryness was so severe that I couldnt even think about anything else.
Now 80 % calmed down, mostly only parotid pain is still flaring :/

at same day i got Sjogren's symptoms i got rosacea , attacking my eyes , i thought it's dryness from sjogrens but it wasnt, .. that calmed down a lot with SIBO treatment, and avoiding histamine food,..another proof it's all from MCAS:/

I always thought it sux to have ME unrecognized disease etc etc, but now I see that's better than having 101 bad lab and diseases that attack organs .....

in 2019 all muscarinic antibodies become negative...but i guess when disease is activated it's over, there is also some reasearch dryness in Sjogrens might be more from autoreactive T cells to Muscarinic receptors so maybe it's not from antibody. Rituximab also doesn't really work from what i heard. :/
 
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pattismith

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There is research where it shows when they filther noradrenaline in blood , many become negative to alpha1.
Maybe other adrenergic too.
You're actually only one without POTS i've ever heard to test positvie and so high, one of highest results I've heard.

Well I believed I don't have POTS either, because My funcitoning was very high comparing to what you read online, with people being in wheelchairs and what not. But i did have long time OI, for example after 5-10 hours on my feet I tend to lay down , sitting drained me even more than standing because whne you sit your leg muscles dont compensate.
that was pretty much only POTS symptoms i had, besides brain fog and circadian rhythm disturbance.

I scored borderline on SSA for sjogrens and borderline on lip biopsy, no symptoms, and negative ultrasound. Basically very big stretch. Unfortunately even though IVIG completely shut down neuropsychiatric part of my disease, incl POTS, it kinda flared Mast cells in weeks post IVIG (i got first time feeling of hEDS too! ever! thankfully only few weeks as well felt joint moderate hypermobility, never before in my life), .. anyway, then combined with hormone shot, it activated Sjogrens 2 hours after shot.
so i think was IVIG flaring MCAS + hormone .. bam
i guess i had it subclinical before too... in events escalating years before as my POTS got worse from each round of antibiotic i took since 2014 for "Lyme"
I scored positive for Lyme too so maybe it was Lyme, but i have family history of Sjogrens so who knows, however my neuro symptoms are 30 yrs old, so life long, even as child i had dysautonomia symptoms and PANS (psychiatric), MCAS... it's hard to believe it can be caused by Sjogrens which came 30 yrs later.
More likely it's either nasty infection (next to genes) or MCAS...

IVIG works amazingly for me, i felt best in whole life 30 years, but it lasts so shortly, and obviously there is danger it can flare other things. :/

btw i am confused as POTS/neuropathies and Sjogrens don't even get worse or better from same treatments and triggers. Recently i took oregano oil which is some too heavy crap from Now Foods (avoid!) and it caused me sooo severe attack of neuropathies i got scared for a while it's large fiber too , etc, it caused worse POTS.
Sjogrens dryness didn't affect even 2%!
So i'm questioning theory that POTS is "just consequence" of Sjogrens.
it's strange that you started to feel the sicca syndrome and hypermobility after you started IVIG.

I wonder if some auto-antibodies aim to compensate our subclinical neurosjogren, so when we try to fight all the antibodies, it results in some loss of balance and some new symptoms to arise.

My neuro symptoms are like yours: 30-35 years old. I always had dry eyes but never was positive to SSA nor SSB, so wasn't given Sjogren diagnosis. I'm currently waiting for a lip and skin biopsy to test Sjogren and SFN.

Like you , I feel worse after some hours standing, but sometimes I feel worse when lying. However, I don't see typical associated changes in BP or heart rate when I feel bad, it's just my brain that can't function.
 

pibee

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it's strange that you started to feel the sicca syndrome and hypermobility after you started IVIG.

I wonder if some auto-antibodies aim to compensate our subclinical neurosjogren, so when we try to fight all the antibodies, it results in some loss of balance and some new symptoms to arise.

My neuro symptoms are like yours: 30-35 years old. I always had dry eyes but never was positive to SSA nor SSB, so wasn't given Sjogren diagnosis. I'm currently waiting for a lip and skin biopsy to test Sjogren and SFN.

Like you , I feel worse after some hours standing, but sometimes I feel worse when lying. However, I don't see typical associated changes in BP or heart rate when I feel bad, it's just my brain that can't function.
yes i felt worse during laying, standing, i didnt connect it so much to orth.intolerance because no palpitations, sweats, shaking, lightheadedness,... it was just "Mild" POTS, but overall caused my dysfunction since 2005, because I cant keep up w orthostatic stress of being on my feet 12+ hours a day continuously.. Right now i dont have other types of fatigue, it's all OI "stress"

My symptoms of sicca started 2 hours after hormone shot. Bad idea, very bad. While you have super high IgG levels from IVIG and you get hormone shot.
but it's true i think IVIG stirred up mast cells, and it can swing both ways then, one needs to be careful

Well i didnt have anything dry until post IVIG.. but if i analyse back it did start even befofre 6 months, and in 2018 my M3 raised to 26, so I think it's not to blame IVIG, but that I got it way too late.
I was rapidly getting worse in 2017 and 2018.
All experiments hurt me...

my SSA turned back negative after IVIG btw... and before it it was 109 (100-120 was borderline, 120+ positive),.

so are you also pediatric case? because i know Sjogren's can start in youth but i am confused by the fact i have neuro things as toddler, it seems something else is behind this other than just AI..

very short lasting hEDS symptoms including head instability after IVIG makes me think all those hEDS people who think it's genetic are missing a lot ... thank god never happened again in 15 months.


p.s. most of my symptoms respond to mold in a way that i 'relapse' when it rains LOL..... that's not freaking autoimmune for sure. unleiy just stabilized MCAS

ps2: i felt extreme improvement 4th day after 2g/kg IVIG so from what i read, so fast it cant lower antibodies (would take weeks at best) or recover small nerve fiber (months), but i had no orth.intolerance after 4 days, and extremely clear brain etc, so i concluded it stabilized maybe MCAS... unless it binds to antibodies , competes with them somehow..
but overall i can tell for sure most symptoms are not from SFN because that cant recover as fast.
and well as many w POTS have much autonomic neuropathy symptoms in organs, I have mostly OI isolated symptom which i guess is not from SFN
i went fom 90% laying to doing sport, painting my room, i almost went skiing, .. (so much about deconditioning relevance lol).
 
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Pearshaped

...and then things went pearshaped.
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My celltrend has come back mostly negative.
positive:
alpha1 adrenergic
at risk:
m3 AChR
so therefore Im not a good patient for immune adsorption.But Im glad anyway it would have been to harsh on me with all the apts.
 

pibee

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My celltrend has come back mostly negative.
positive:
alpha1 adrenergic
at risk:
m3 AChR
so therefore Im not a good patient for immune adsorption.But Im glad anyway it would have been to harsh on me with all the apts.
i've seen really negative ones, very low numbers around 1, people without autoimmune disease.. so i wouldnt dismiss 2 antibodies fully
 

Pearshaped

...and then things went pearshaped.
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@pibee yes tbh I dont know what to make of these results,I have severe OI and POTS and have positive ANAs for a decade.It probably means My pots is secondary and not primary which would make sense in my case.(?) This ilness is too complex for me.🙄