POTS, OH, CFS: List of labs which test for adrenergic and muscarinic receptor antibodies

[Lolinda]

You posted a long list above. Is it that you are positive for antibodies against all these things?? .((( Or what you want to get tested?

For antibodies and POTS alike, have you checked out Prof. Angela Vincent, UK? She is retired, but her lab, group, clinic etc may still exist. In fact, I do know that her lab still existed a few month ago because I got tested sending blood samples to them. Things that are needed and overrun will (hopeuflly) be kept operating. She was THE expert in UK for lots of antibodies and published on POTS, too. And if I had here such an expert (or the lab remained thereof) I would go there. Yes, I do advocate self treatment. But as a side-track I always sign up for some doctors, wait sometimes even half a year for the apointment, and maybe when the appointment comes I will have some things for what I (still or newly) need them...

Then, have you checked out clinicaltrials.gov? If any clinical trials exist in UK where you can enroll? You dont pay, but they thank (or even pay) you!

Actually, whith this many antibodies: dont they deem you eligible for any medical treatment such as IVIG? I mean, myself I didnt want to do that and I succeeded getting rid of antibodies. But with such a burden.... maybe I would consider...?

Looking at your list, however, I guess you know that anti-citrullinated protein has to do with bacteria causing autoimmunity? So maybe there could be a causative treatment... not merely an antibody removal a la ritux or IVIG...but real treatment!

 

[sb4]

You posted a long list above. Is it that you are positive for antibodies against all these things?? .((( Or what you want to get tested?

For antibodies and POTS alike, have you checked out Prof. Angela Vincent, UK? She is retired, but her lab, group, clinic etc may still exist. In fact, I do know that her lab still existed a few month ago because I got tested sending blood samples to them. Things that are needed and overrun will (hopeuflly) be kept operating. She was THE expert in UK for lots of antibodies and published on POTS, too. And if I had here such an expert (or the lab remained thereof) I would go there. Yes, I do advocate self treatment. But as a side-track I always sign up for some doctors, wait sometimes even half a year for the apointment, and maybe when the appointment comes I will have some things for what I (still or newly) need them...

Then, have you checked out clinicaltrials.gov? If any clinical trials exist in UK where you can enroll? You dont pay, but they thank (or even pay) you!

Actually, whith this many antibodies: dont they deem you eligible for any medical treatment such as IVIG? I mean, myself I didnt want to do that and I succeeded getting rid of antibodies. But with such a burden.... maybe I would consider...?

Looking at your list, however, I guess you know that anti-citrullinated protein has to do with bacteria causing autoimmunity? So maybe there could be a causative treatment... not merely an antibody removal a la ritux or IVIG...but real treatment!

I apologize , I wasn't clear, they are some antibodies that are associated with cfs. I figure if I ask for a bunch maybe they will do some. I will also try to twist arms for the aA1 test.

I am interested in doing clinical trials only after I have tried a few self things first.

I have found that Bethanechol is selective to the M3 receptor so this could be a good candidate to test my theory.

How are you holding up with your pots improvement ? I see you arw wanting to push Vit D higher

 

[sb4]

For antibodies and POTS alike, have you checked out Prof. Angela Vincent, UK? She is retired, but her lab, group, clinic etc may still exist. In fact, I do know that her lab still existed a few month ago because I got tested sending blood samples to them. Things that are needed and overrun will (hopeuflly) be kept operating. She was THE expert in UK for lots of antibodies and published on POTS, too. And if I had here such an expert (or the lab remained thereof) I would go there. Yes, I do advocate self treatment. But as a side-track I always sign up for some doctors, wait sometimes even half a year for the apointment, and maybe when the appointment comes I will have some things for what I (still or newly) need them...

Yes she seems to be clued in, will be worth a look if I can't do this myself... where do you live?

 

[Lolinda]

my theory.

Now correct me if I'm wrong but these receptors are activated by muscarin/acetylcholine meaning that my body can't simply pump out more muscarin to help M3/4 without giving too much to the other receptors. So these will be stimulated less in me.

Interestingly some of my big problems are POTS, gastroparesis, and dry mouth. Well M3 is responsible for salivation, and smooth muscle contraction (stomach, intestines, blood vessels). This goes a fair way to explain these symptoms.

Smart theory. To begin with, I can neither prove nor disprove it. Let me start with some very simple comments. I preassume that you know all or most of them. But if there is a single one that should be new, I am glad to have written them down.

• These receptors work like this: The nerve impulse goes electrically to the end of the axon of the nerve. There it is transformed from an electrical message into a chemical message (noradrenaline in case of A1 A2, acetylcholine in case of the rest).
• Here comes an important point: These substances, both noradrenaline and acetylcholine, act (mostly) locally. So this is an argument against what you say: It is not that you switch a light switch on the wall and a huge chandelier with 100 bulbs goes on. But rather a small local thing where a nerve axon goes for example to a blood vessel, which has a receptor, in this case A1, and this hears the noradrenalin message and so the muscle in the vessel wall contracts. But lets look at it in more detail:
• Noradrenaline has a spillover into the circulation, so, if many neurons push noradrenaline strongly, then this will affect other parts of the body indeed. And it can be measured in the blood. This is the basis of the test for hypadrenergic POTS: If your noradrenaline difference, measured in blood, between supine (resting 10 min) and standing (standing 15 min) is >600pg/mL, then your neurons push too much noradrenaline. This is a cause ofPOTS! Here, everything in the body that reacts to noradrenaline goes high (heart beat included!). But this is then limited to noradrenaline, which only operates A1 and A2.
• Acetylcholine decomposes very fast. This is why everyone wants to measure acetylcholine levels in the body, but nobody can. There is no other effect than a totally limited local one, just at the nerve ending.
• If we sum up all the above, then this amounts to the following: It is not excluded that there are two (or more) different types of receptors close to an acetylcholine-producing nerve ending. So yes, in this case they would be operated like a chandelier: one light switch switches on several bulbs. To find out if this occurs in the body or not, one really had to dig through dozens of scientific papers. If it occurs, then in which tissues, which receptors, etc. But in all case, from the above description, one thing should be clear: this is not per se the default situation, not at all.

I do note that you found a paper that achieving even small differences in M3, all within the normal range, led to treatment outcomes. But does this actually really mean this? If you do IVIG on a person, you dont specifically eliminate the M3 atibodies. You eliminate all antibodies. So we do not at all know what caused what. Is the M3 AB difference an epiphenomenon (a bystander) or is it the effector? Who knows. Would you mind posting the study you are referring to?

In sum, my best guess is this: Yes, I follow myself sometimes such theories that are maybe not very likely ... what should I do, maybe better than nothing. But I have 2 arguments, or rather questions against it:

• Have you already done simple general things to diagnose your type of POTS?... that lead to some treatment? Before going into quenching out the last tiny chance that some normal range M3 causes something to you... maybe there is something simple and big and important to diagnose? For example you could check if your pattern of blood pressure when standing up fits a hypadrenergic response or not. This one you can even do at home, all you need is a BP meter. Or you can ask a doctor to do a laying-standing noradrenaline test. All these things you find in this paper by the Mayo clinic. In the paper, they also provide some simple methods to improve your situation depending on the test outcomes.
• I always make a difference between "replenishing resources" and "interfering with my body's normal ways of functioning". Certainly, there is no clear-cut difference. Taking more choline for example, is rather replenishing resources. It increases acetylcholine in the end, but the essential point is that it does not force acetylcholine but just provides the fuel for the body to operate. acetylcholinesterase-inhibitors, however, force a longer andstrongeraction of acetylcholineand are not without dangers. You can read stories of patients here on PR desperately trying to recover from this poison. More on this on my thread on transdermal choline. ...With things that interfere with functioning, I am very very careful...

I am interested in doing clinical trials only after I have tried a few self things first

In case you havent taken part in a clinical trial yet: it costs very little time to sign up and then you anywise have to wait. So better sign up now to have sthg in half a year (or weeks or months ...) Also, the opportunity to take part in one is rare. One needs to check all x months on clinicaltrials.gov. All clinical trials usually provide explicitly the statement that you can withdraw any time. And most importantly: Many people who do not work in science imagine clinical trials like this: some unproven dangerous drug is tested on humans who essentially serve as lab mice. Some die, others survive. Then, big pharma profits and develops the new super drug to gain $$$... Reality, compared to this, is as mundane as follows: many trials do not even have any intervention at all. All they do is testing to gain data. So there you go, you get what? The tests you want! Just enter any test name you are interested in into the search, reduce scope to UK. All this should not cost you more than 15 min, maybe 40 the first time. In most cases you wont even find any clinical study that would be of interest at al. You can be happy if you do.

 

[sb4]

I preassume that you know all or most of them. But if there is a single one that should be new, I am glad to have written them down.

You presume too much of me.

If we sum up all the above, then this amounts to the following: It is not excluded that there are two (or more) different types of receptors close to an acetylcholine-producing nerve ending. So yes, in this case they would be operated like a chandelier: one light switch switches on several bulbs. To find out if this occurs in the body or not, one really had to dig through dozens of scientific papers. If it occurs, then in which tissues, which receptors, etc. But in all case, from the above description, one thing should be clear: this is not per se the default situation, not at all.

Let me see if understand you correctly. If there are multiple receptors responding to one nerve impulse then my theory makes sense. However if there is one nerve receptor , lets say m3, with antibodies , then the nerve impulse could keep firing until the correct response is produced ? If this where the case then surely antibodies causing problems should be very rare , no?

Maybe the salivary , gut and blood vessels contain multiple ...

I do note that you found a paper that achieving even small differences in M3, all within the normal range, led to treatment outcomes. But does this actually really mean this? If you do IVIG on a person, you dont specifically eliminate the M3 atibodies. You eliminate all antibodies. So we do not at all know what caused what. Is the M3 AB difference an epiphenomenon (a bystander) or is it the effector? Who knows. Would you mind posting the study you are referring to?

Sorry , I was referring to a paper that maybe you brought to my attention. It was not specifically m3 but patients responding to antibodies therapy even with normal values.

I know im clutching at straws here but if antibodies are normal yet all active you could be worse than someone with high values yet inactive antibodies.

Have you already done simple general things to diagnose your type of POTS?... that lead to some treatment? Before going into quenching out the last tiny chance that some normal range M3 causes something to you... maybe there is something simple and big and important to diagnose? For example you could check if your pattern of blood pressure when standing up fits a hypadrenergic response or not. This one you can even do at home, all you need is a BP meter. Or you can ask a doctor to do a laying-standing noradrenaline test. All these things you find in this paper by the Mayo clinic. In the paper, they also provide some simple methods to improve your situation depending on the test outcomes.

When I wasn't on drugs my heart would go from 80 to 150 consistently however blood pressure only little change. Now im on drugs it's mych morr controlled. I have run out of ideas .

I always make a difference between "replenishing resources" and "interfering with my body's normal ways of functioning". Certainly, there is no clear-cut difference. Taking more choline for example, is rather replenishing resources. It increases acetylcholine in the end, but the essential point is that it does not force acetylcholine but just provides the fuel for the body to operate. acetylcholinesterase-inhibitors, however, force a longer andstrongeraction of acetylcholineand are not without dangers. You can read stories of patients here on PR desperately trying to recover from this poison. More on this on my thread on transdermal choline. ...With things that interfere with functioning, I am very very careful...

Yes i had those problems with acetylcholinesterase-inhibitor and have tried those supplement.

In case you havent taken part in a clinical trial yet: it costs very little time to sign up and then you anywise have to wait. So better sign up now to have sthg in half a year (or weeks or months ...) Also, the opportunity to take part in one is rare. One needs to check all x months on clinicaltrials.gov. All clinical trials usually provide explicitly the statement that you can withdraw any time. And most importantly: Many people who do not work in science imagine clinical trials like this: some unproven dangerous drug is tested on humans who essentially serve as lab mice. Some die, others survive. Then, big pharma profits and develops the new super drug to gain $$$... Reality, compared to this, is as mundane as follows: many trials do not even have any intervention at all. All they do is testing to gain data. So there you go, you get what? The tests you want! Just enter any test name you are interested in into the search, reduce scope to UK. All this should not cost you more than 15 min, maybe 40 the first time. In most cases you wont even find any clinical study that would be of interest at al. You can be happy if you do.

Yes I will look, im signed up for one but 1.5y wait.

 

[Strawberry]

As for POTS, the single most important receptor antibody is A1.

So does that mean that I do have POTS? What do positive M3 and M4 mean? (even though I am borderline on M3)

Thank you for your knowledge.

 

[sb4]

So does that mean that I do have POTS? What do positive M3 and M4 mean? (even though I am borderline on M3)

Thank you for your knowledge.

I am negative m3 m4 but have significantly higher levels antibodies than other receptors. Im not sure about m4 but I think M3 could be significant.

 

[Strawberry]

@sb4 (and anyone else that has had this test recently) HOW DO I PAY FOR THIS??? I'm going nuts. They sent me an invoice with my results, but they have not yet responded to two emails (to two separate addresses) asking how I can pay.

The first email I replied to the email that they sent the invoice and results, it was the Dr's email. Second time I emailed
"info@celltrend.de" which shows on the invoice.

 

[Gingergrrl]

@sb4 (and anyone else that has had this test recently) HOW DO I PAY FOR THIS???

At the time I did the test I was one of the first in the U.S. and I had to go to my bank in person and pay via wire transfer which involved switching dollars to Euros. However, I have been told by multiple other patients that Cell Trend now has a way to pay via PayPal which should be much easier. I do not have the PayPal info but am hoping someone else will PM it to you or Cell Trend will reply to your e-mails. You can also call them but eight hrs ahead of us west coast people.

 

[sb4]

@sb4 (and anyone else that has had this test recently) HOW DO I PAY FOR THIS??? I'm going nuts. They sent me an invoice with my results, but they have not yet responded to two emails (to two separate addresses) asking how I can pay.

The first email I replied to the email that they sent the invoice and results, it was the Dr's email. Second time I emailed
"info@celltrend.de" which shows on the invoice.

In their email there is a paypal adress, simply log on to paypal and make a payment.

 

[Strawberry]

In their email there is a paypal adress, simply log on to paypal and make a payment.

Is this what you mean by a paypal "address?"
"PayPal: Info@CellTrend.de"
There is other data on the invoice, but undecipherable to me.

The email was blank, only the invoice and results in two separate attachments.

I really have no intention of using paypal, they stole my data before. It was for a corporate purchase, with a corporate card used, and next time I logged in they also had my personal card data. They wouldn't allow me to delete it, even though I never entered it. Then shortly after my card was used for an unauthorized "purchase"... I don't want them having my new card #.

I will try emailing them a 3rd time, but considering its been over a week since the 1st email was sent...

 

[Strawberry]

Okay now you guys can let me know if I'm ignorant, or if this is payment instructions. Here is the picture of the bottom of the invoice.

 

[Gingergrrl]

@Strawberry The part that says "IBAN" is the "Interbational Bank Account Number" and is what I had to use to do the bank transfer in person from US dollars to Euros.

I called Cell Trend first to make sure I had all the info, bank name & address, etc, and then had to make an appt at my bank b/c transfers only done at certain times. I'd use the PayPal option but it did not exist (at least for US patients back when I did the tests) and I've had PayPal fraud in past too. The wire transfer was challenging and expensive (but it definitely can be done if you are not comfortable w/PayPal).

 

[Strawberry]

Perfect! Thank you Gingergirl!

 

[Jo86]

hey guys, my results were:
anti a-1 adrenergic Antibodies positive (10.1)
anti b-2 adrenergic Antibodies positive (15)
anti-Muscarinic Cholinergic Repector 3 -Antibodies at risk (9.5)
anti-Muscarinic Cholinergic Repector 4 -Antibodies at risk (6.9).

A doctor I'm in contact with from the US might be suggesting ivig rituxan. I read up on that really quick, it can be fatal by a brain infection - I mean how does one bring himself to taking that risk ?! I understand we're in a drastic, dire situation, I personally have had this enormous chronic fatigue for 10 years and counting getting progressively worse, but I never thought it'd come to maybe dying from trying to improve (!).
Has anyone tried this on here ? (and any success ?)

the other question I have is, living in France getting anything done (prescription drugs etc) is near impossible, they'd need totally conventional results for conventional methods, they'll never prescribe anything like antibiotics based on for e.g. IgG chlamydia pneumoniae. They're super, duper strict. Have you guys found a greater ease getting the rituxan in your respective countries (considering its intrinsic risks) ??

 

[Gingergrrl]

A doctor I'm in contact with from the US might be suggesting ivig rituxan.

IVIG and Rituxan are two totally different medications and protocols. I'm confused if you are asking if they are one thing that always go together from your post. If so, the answer is an absolute no and some patients are clinically indicated for one or the other vs. some are potential candidates for both.

Each has side effects/risks but each can also have huge rewards. I've had great benefit from IVIG and still in process trying to get RTX approved. If it gets approved, I will do it in a heartbeat. The brain infection you are mentioning is PML and is an extremely rare side effect of RTX (not of IVIG). I get IVIG at an infusion center that is a cancer center and even in patients with various cancers who do 4-5 types of chemo plus RTX, they have never had a case of PML and neither has my doctor.

Re: your last question, I have no idea re: the medical system in France so cannot give a good reply (but maybe others can answer). The part I can reply to is that the cost of these treatments outside of the U.S. is significantly cheaper but that pretty much applies to all meds.

 

[Jo86]

Thank you Gingerlgrrl - oh, thought they were the same. And I don't mean to be "a drag", but read up well on rituxan before you "do it in a heartbeat" though, it's highly experimental if anything for POTS/CFS cases and has indeed caused many PML's. Do be mindful of that. I know we're all "dying" to get better, but we need to really be reasonable with what we do. It's also super expensive from my understanding.

Do you get any relief from IVIG then ?

 

[Gingergrrl]

Thank you Gingerlgrrl - oh, thought they were the same.

No worries and they are two totally different things.

And I don't mean to be "a drag", but read up well on rituxan before you "do it in a heartbeat" though, it's highly experimental if anything for POTS/CFS cases and has indeed caused many PML's.

You are not being a drag and I have read the prescribing info, many journal articles, and consulted w/several doctors on this. One year ago, I would not have considered these treatments. But now that I know that I have 11 autoantibodies and that the chance to destroy the B-Cells to eliminate the Auto-Abs at production level (allowing the B-Cells to potentially grow back healthy) is worth the risk to me.

I do not believe I have CFS (although I could certainly end up being wrong about this) vs. a B-Cell dependent autoimmune disease that is behind all of my symptoms including POTS. I've used a wheelchair for 2.5 years and if I have a chance to stand/walk/drive again, etc, it is worth death to me. Am doing this with full informed consent (if I indeed get the chance to do it).

I know we're all "dying" to get better, but we need to really be reasonable with what we do.

I have had near fatal reactions to food (from MCAS), to IV saline, and to an antibiotic. For whatever reason, trying a treatment with the potential to truly make me better does not scare me.

It's also super expensive from my understanding.

Am trying for insurance approval even though it is a long-shot. If I had to pay the full cost, then it is no longer an option.

Do you get any relief from IVIG then ?

Yes, more than anything I have tried. Was able to stand up from wheelchair and open very heavy patio door tonight with no ill effects. I could not have done this prior to IVIG to save my life. In fact last year I had a serious flood in my apt while home alone w/my dog and I could not open the front door to get us out (and front door in former apt was much lighter than this patio door). My response to high dose IVIG makes me a good candidate for RTX vs. if I'd had no response to IVIG, we'd probably be viewing this differently.

Am only speaking for myself and not saying that anyone else should do these treatments. But finding out I was positive on 7 of the 9 Cell Trend Abs was the final evidence that I needed that I was on the right treatment path.

 

[Jo86]

Gingergrl thx for all this info, I'm off discussing these two meds with Dr.Kaufman from Open Med Clinic in a couple of days, will see his input on the IVIG and Rituxan.
Something tells me you'll do just fine, in just a couple of exchanges you seem to me like you're well under control and hungry for salvation. There's a positive hunger and ambition about you.
We all are hungry of course, and have all suffered a million times what the regular person has, but yet, we're still here.

 

[Gingergrrl]

Gingergrl thx for all this info, I'm off discussing these two meds with Dr.Kaufman from Open Med Clinic in a couple of days, will see his input on the IVIG and Rituxan.

. Please keep me posted and feel free to send me a PM. I noticed your avatar and are you traveling all the way from Qatar to see Dr. K? If so, safe travels and am very interested to hear about your experience.

Something tells me you'll do just fine, in just a couple of exchanges you seem to me like you're well under control and hungry for salvation. There's a positive hunger and ambition about you.

Thank you so much for saying that and I am truly at the point that I will try everything that I believe can help me or I will die trying. I don't think anything could really stop me at this point.

We all are hungry of course, and have all suffered a million times what the regular person has, but yet, we're still here.

Agreed and this illness (whatever it is) will not win.