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

Discussion in 'Diagnostic Guidelines and Laboratory Testing' started by Lolinda, Sep 8, 2016.

  1. Lolinda

    Lolinda after meals, I need to lay in bed for hours

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    In POTS, OH and CFS, antibodies against adrenergic and muscarinic receptors can contribute to the disease by binding to the receptor and cause it to malfunction. See also here. It is now possible to test this. I got tested. So from my experiences, I will describe in this post where to get tested and how to send the sample.

    This thread is for questions and ideas regarding: labs, tests, sample sending, etc. There are separate threads for:

    Wonder why I create separate threads for these? I just hate it to browse through threads of 30 pages talking about everything on earth often not related to the thread title. Takes hours. So this is my little initiative to have small threads that answer exactly one specific question. You need some information and you get exactly that. I also support a lot @Hip 's idea for a clever search that finds the most relevant posts.


    Simple introduction

    What is all this about?
    When a nerve sends a message to a muscle or another nerve, then at the end of the nerve, a chemical is released. On the receiving muscle or nerve, there is a receptor that listens to these chemical messages. An autobody is not a nice thing, because it binds to the receptor, so the receptor won't hear the message. It is like talking to somebody wearing ear plugs. Now, these ear plugs are around in the body and if they find an ear (a receptor), they block it. It is also possible that they activate it permanently. This messes up a communications between nerves and parts of the body. A common misconception is that people think these antibodies would destroy nerves or such, as in other autoimmun diseases. These dont.

    Concretely, which receptors are we talking about?
    I found this diagramm by @halcyon useful. It contains a simple way of structuring all these receptors: there are adrenergic and cholinergic receptors. The adrenergic receptors divide into alpha-adrenergic and beta-adrenergic receptors. The cholinergic receptors divide into muscarinic-cholinergic (or simply muscarinic) and nicotinic-cholinergic (or simply nicotinic) receptors. If you wonder what this adrenergic, cholinergic, muscarinic and nicotinic is about: adrenergic means that the respective receptors are stimulated by adrenaline or noradrenaline, that is stress hormones. Cholinergic receptors are stimulated by the neurotransmitter acetylcholine. Now the cholinergic receptors divide into two types: some are, in addition to acetylcholine, also stimulated by nicotine, others are also stimulated by muscarine.

    And now you become the medical pro by learning technical abbreviations... :) :
    Adrenergic and muscarinic receptors are divided into enumerated subgroups:
    A1, A2, B1, B2, M1, M2, M3, M4, M5
    These are short names, where A1 stands for "Alpha 1 adrenergic receptor", B1 for "Beta 1 adrenergic receptor", M1 for "muscarinic cholinergic 1 receptor". As all this post is about antibodies, I will not always write "A1 antibody" but simply "A1".

    What the heck do all these receptors do?
    They all have a myriad of different functions, just look up some on wikipedia. It is much about vasoconstriction, vasodilation, and heart beating. How antibodies to these receptors contribute to POTS, OH or CFS is discussed here.

    - If things still remain unclear, let me know what you want to know.


    Which antibodies to test for which disease?

    My decision was to get tested for all A1, A2, B1, B2, M1-5. However, in order to save cost, it is possible to restrict to the most relevant ones depending on your issues: see this thread. In any case, this is a hot area of research where new publications are coming out. So if today the relevance of an antibody is not yet known, maybe in a month it is. -> Better test all.


    Where to get tested - commercial

    I know only one commercial lab:

    http://www.celltrend.de/

    Trustworthiness:
    Their tests are the ones used by Prof. Scheibenbogen, CFS researcher at the Charite Berlin, a premier academic medical institution in Germany. Actually, they developed the tests together. Just search for Celltrend in this paper.
    So, this is why I trust them.

    BUT: Be patient with them:
    They are a research lab usually serving other researchers. They are in the process of opening up to private customers, but things are simply not yet that smooth as one would expect it. For me, being a researcher, it is really not an issue. I wrote this post to help all others who want to do these tests but do not have the experience to do so. In my opinion it is better to have a not-so-smooth process but a professional test than otherwise round. There are so many questionable labs on which no researcher would trust even the blood of their lab mice, but sending in samples and receiving results is super smooth, giving you the utmost false impression of professionalism...

    Tests:
    • There is a dedicated page for a reduced set of antibodies most relevant for CFS.
    • The complete list of all their receptor antibody tests A1, A2, B1, B2, M1, M2, M3, M4, M5 can be found here. This is the list of tests that I had done.
    Costs:
    See the requisition forms attached to this post. Unfortunately, one of the most important antibodies for POTS (A1, see this thread) is also the most expensive. They explained me that adrenergic antibodies need different chemical reagents than the rest.

    Requisition + blood draw:
    Their new requisition form for all these tests is not yet online, so I attached it to this post, in English and in German. Blood draw instructions for the lab are at the bottom of the requisition form.

    Prescription:
    You do not need a prescription and you do not need to involve any doctor at all. You can fill out the requisition form yourself. You pay directly to Celltrend, they invoice you. All you need to get done by a local lab is the blood draw. There are further important things on the blood draw. I give these details below, messed into my shipping instructions.

    Shipment:
    Celltrend receive samples from allover the world. However, their international shipment instructions for private customers are not yet ready. I did similar international sample sendings several times. So here is how I sent the samples to them. I give you all details, but actually it all boils down to a few phone calls, optionally a doctors visit, a lab visit, 2 papers filled out and receiving a Fedex guy at your door.
    • First, call Celltrend and ask for their Fedex Number. Thats all what you need from them in advance. No need for any test kit.
    • Call Fedex and ask them about delivery options to Celltrend, Germany. Celltrend specifies the following possibilities:
      • 24h shipment is fine in any weather
      • 72h shipment is fine when there are normal room temperatures outside. It is not ok in hot summer with 30°C
      • 96h shipment is fine in a cold pack (4°C)
    Fedex will tell you what of these they can offer from your location. The 24h shipment is a particularly attractive option as it is available from many locations at no additional charge. ​
    • You may want to make sure the transport is done at "international priority" rates, which are the normal rates.
    • Fedex will come to you. Ask which is the latest pickup time. Here where I Iive, pickup times are specified as 2h windows within which the Fedex guy comes to your door. For the 24h delivery, they have special pickup times that are earlier than for normal delivery.
    • After all these preparations, arrange with a doctor / lab for the blood draw. For all the A1, A2, B1, B2, M1-5 tests, you need 1 serum tube in total, no more. Important: make sure in advance that the specific lab office you will be visiting can produce the serum right there in the office. They need a machine for that, a centrifuge. Big labs may have many small blood drawing stations without the machines, which then are in the central lab facility. That won't work for you.
    • When in the lab, insist that they centrifuge and separate the blood within 60 minutes after the blood draw. Centrifuging makes the red blood cells collect into a mass. All the remainder will be a yellowish liquid that looks like pee :) Separating means that they transfer the serum into a separate tube which then contains only the serum.
    • Make sure your name and date of birth is on the tube
    • Now call Fedex to pick up the sample. Ask for a "clinical pack". That is a special packaging. They will ask you if sending on dry ice is needed. You don't need that. (And you dont want to pay that!! :) ).
    • Prepare and print out a "proforma invoice" to be sent with the clinical pack to make sure customs don't stop things. If you don't know what that is, ask Fedex. It is a word document of a few lines of text. Prepare it like Fedex specifies. They will tell how many copies.
    • Important: The Fedex guy at your door will ask you to fill out a form where you specify Celltrend as the recipient and yourself as the sender. In this form you must mark that the Fedex costs are billed onto the recipients Fedex number and you must specify their Fedex number. (Celltrend will then bill the cost to you together with the costs of the tests. The purpose of this procedure is simply that Celltrend gets cheaper Fedex rates. They have a higher traffic.)
    If you feel overwhelmed:
    • Ask your doctor if you can get a "flying nurse" service, so you can get blood draw at home and do not need to go to any lab.
    • Alternatively, you can reduce effort by cutting out the doctor, see "Requisition" above.
    • Instead of interacting with Fedex yourself, you can also have this done for you by some labs. In fact, I made good experiences with this: Not far from me, there are two small, owner-managed labs. They are far more flexible and customer-oriented than big labs. Both were immediately ready to do some international sample sendings for me. All I needed to do is to reassure them that the Fedex costs are not billed onto them but onto the Fedex number of the recipient. Tell them what the latest pick-up time is for your shipment option and provide them with the Fedex number for Celltrend.

    Additional test for better interpretation of the results:
    The Celltrend tests only measure if there are antibodies. They do not answer the question if your antibodies are agonistic or dysfunctional. That is, if they activate or block the receptor. The importance of this is discussed here , for POTS, OH and CFS. Unfortunately, if you wish to find out which of these happens at your receptors, things get tricky: you need a "rat cremaster assay":
    What that means? Kill a rat and use the reaction of a still living artery from their testicles as a measurement device... :eek: :eek: Poor rats... I am not aware of any commercial lab offering this, let alone if every testicle artery of every rat behaves the same... :D :eek: But maybe the following could be useful: Activation of the beta receptors increases cAMP in plasma, see this research.
    Labs testing for cAMP in plasma:
    You want the blood test and not the 24h urine test, see this paper. The paper also contains normal values in supine position. Normal values for normal blood draws without supine position are 16-20 pg/ml, see this paper. (PM me if you want to read the fulltext)
    There are problems with such measurements, because other factors than receptor autoantibodies can elevate cAMP. But if beta adrenergic receptor autoantibodies are elevated then more likely than not a high or low cAMP will indicate agonistic or dysfunctional beta receptor antibodies, respectively.
    To say it clearly, this cAMP testing is my own and fully experimental idea. Comments welcome! Nevertheless testing could have additional interest because cAMP blocks the innate immune system. Thanks to @Emootje for all the discussions on cAMP.


    Where to get tested - research

    If you are lucky, you also may have a chance to get tested at a research center. For example, you could get included in a scientific study. This has advantages such as that you do not have to pay and that you meet doctors who are knowledgeable in interpreting the results. So here I collected the research centers I know of.

    Prof. Scheibenbogen, Charite, Berlin, Germany.
    CFS researcher. Her research:
    The following researchers did to my knowledge not publish research using the Celltrend tests. They have their own testing methods. In all the studies cited below, they used tests based on living cells. Such tests are usually not well suitable for routine test usage, but very well suited for research. If I would live anywhere near them, I would just ask if I am eligible to be included in one of their studies.

    Prof. Angela Vincent, Oxford, can measure adrenergic receptor antibodies. Her research:
    • The following paper is not about POTS or CFS but about chronic complex regional pain synrome and is only here to show you that she can measure adrenergic receptor antibodies: http://www.sciencedirect.com/science/article/pii/S030439591400445X However, she does publish also on POTS. So she is likely a good address. (Let me know if you have experiences and I will modify these lines accordingly)
    David C. Kem, MD, Heart Rhythm Institute, University of Oklahoma Health Sciences Center
    and
    Dr. Satish Raj,Vanderbilt University
    Their research (POTS and OH):

    I thank a lot to @Research 1st , @kangaSue , @Freddy @Hip @Emootje, @Gingergrrl and many others for all the links, discussions and your interest, in PMs or on the original thread.
     

    Attached Files:

    Last edited: Oct 14, 2016
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  2. trails

    trails Senior Member

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    Thank you for your efforts in researching this, Lolinda!
     
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  3. Navid

    Navid Senior Member

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    Gingergrrl and actup like this.
  4. Lolinda

    Lolinda after meals, I need to lay in bed for hours

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    @Navid, unfortunately, no idea. But to accomodate your question, I just quickly created the treatment thread that I planned. Here it is.
    It contains now several treatment options, though I originally planned to create it later, after doing more research. If you have contributions, they would be more than welcome!

    Question to you: Have you ever been annoyed by super long threads that jump from testing to treatment to politics to research funding....? Its so typical here on PR. I love PR as it is, but I do not love browsing for hours to find (or miss!) what I am looking for. So I thought we could do better. Hence, I created separate threads for testing, for pathomechanisms and now for treatment.
    How do you like this? It requires a little discipline.... but I hope it ends up in well readable threads that address exactly what the thread title promises.
     
    Last edited: Sep 8, 2016
  5. Gingergrrl

    Gingergrrl Senior Member

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    @Lolinda, I just discovered this thread which is brilliant and bookmarked it so I can read the links. I really need a solid day where no one else is home and I can just read through everything :bang-head:.

    Yes, this is my experience with trying to contact them via e-mail... that they are not quite ready for private customers. But I trust them and am willing to wait or figure it out on my own with all of your helpful info below!

    So you did nine separate tests with just one tube of blood?

    Very good to know.

    So it sounds like just one tube of blood is all that is needed? I am the first patient of my doctor to do this and would love to be able to get all of the info to give to him.

    I did not know about this part. So do you just wait at the lab for an hour (assuming they are not busy) and then they just give you the tube of yellow serum? Do labs find this a weird request or is this normal?

    Thanks and that is crucial but I could see it being missed.

    I was not sure if dry ice was needed, that is also very good to know.

    Just want to clarify, are you saying that Vanderbilt can run the same tests as Cell Trend in Germany? My impression was that Cell Trend was the only lab on earth who currently does these tests?

    You are very welcome although I doubt that I contributed much except a lot of questions LOL.
     
  6. Lolinda

    Lolinda after meals, I need to lay in bed for hours

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    I did not have any issues with this request and never had any issues with anything similar. In fact, I had the crasiest things done: test x, then let me eat a meal, then test y laying, then test z after 10 min standing.... They didnt even raise their eyebrows, in no lab, ever.

    Good that you ask - there is however one thing I forgot to mention above: make sure the lab does have a centrifuge to centrifuge the blood right there in the office. Centrifuging is the procedure to produce serum from blood. The thing is that big labs sometimes have many small blood drawing stations all over the city, which do not have the machines. They transport the blood to the center, where there are all the machines. That wont deliver a tube of serum into your hands.

    Yes. that sounds incredible, but they need so little serum, that 1tube of serum does all the 9 tests.

    I am also under the impression that Vanderbilt cannot do these same tests as Celltrend do. But they do a lot of good research and for that they do a lot of testing. They will be able to do useful tests in this direction, whatever these tests exactly are. Such differences are not necessarily bad. To the contrary: If they are ready to receive you as a patient, there is some chance they can offer some of their own research test and will be able to best interprete them.

    You have good questions, I will update my descriptions above.
     
    Last edited: Sep 9, 2016
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  7. Dr.Patient

    Dr.Patient There is no kinship like the one we share!

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    @Lolinda Do you mind sharing your results, and how you or your doctor are interpreting these results?
     
  8. Sushi

    Sushi Senior Member Albuquerque

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    I've often done this--either at a doctor's office where they had a centrifuge or a hospital lab. They did it immediately.
     
  9. Gingergrrl

    Gingergrrl Senior Member

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    Thank you for that additional info re: the centrifuge and there is a specialty lab in our area and I suspect that they can do it (once I get that far).

    Thank you and that is good to know.

    That was my impression, too, and I am too ill to fly to Vanderbilt anyway. I really want the specific tests from Cell Trend and eventually will call them (b/c non-responsive to e-mail) but you have answered most of my questions which is awesome!

    I always have questions... this is my specialty :D. Thank you for your answers.

    Thanks, Sushi, and I am pretty sure that the specialty lab near us can do it but if not I will try a hospital lab. This project will take me a while but it something that I definitely intend to do.
     
  10. Lolinda

    Lolinda after meals, I need to lay in bed for hours

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    Absolutely! Would you share yours too? Anyone else interested to share? Just look into the very first post on this thread. There you see that I announced that there will be such a thread where all people share results and symptoms, so we can compare.

    Anyone reading this:
    --> just put a like to this post to indicate that you would be imterested to share your results when they arrive.
    --> or pls PM me if you already have results to share. I think of creating the thread when we are a few people. This will also give me some time to further learn interpretation :)

    This thread will be in the members only section for additional privacy protection.

    I ask for your votes not without reason: putting up such a results-and-symptoms thread is not as simple as it sounds. So I am interested to know in advance if anyone is interested at all. Yes, it is more than just clicking "create thread" :). In fact it all relies on a scheme that ensures comparability across people. Why? Couldnt we just be easy and spontaneous? This time, no: If person A writes "my complaint is that I feel bad" and person B writes "I have a neuropathic POTS with blood pooling in the legs" then how on earth can we compare?? We learn zero. So we need some ideas to make all this useful. For example a template, which is simple, short and not too scientific/geeky. So this is what I plan to prepare. This means work. And guess what, I am sick, too :). I am always glad to contribute to PR as a community but need to be economical with my active time. It would be sad to end up with no one being interested, so I can compare my results with mine... :eek: :D :(
    --> If anyone would be ready to take part in the preparation of the template, PM me.
     
    Last edited: Sep 10, 2016
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  11. Gingergrrl

    Gingergrrl Senior Member

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    @Lolinda I will absolutely share my results once I eventually do this test. It will take me a while but hoping sometime in this millennium LOL
     
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  12. CFS_for_19_years

    CFS_for_19_years Hoarder of biscuits

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    I'm a retired medical technologist so I want to comment on blood processing, something I did a million times. You mentioned that "centrifuging makes the red blood cells collect into a mass." Actually, there are two things that have to happen. First, the clotting factors in the blood take about 30 minutes to be activated from coming in contact with the glass tube so that the blood sample can form a clot, then second, centrifuging can take place.

    Blood is composed of red cells, clotting factors and serum (the yellow part). Plasma (still yellow) contains serum plus the clotting factors. Unless coagulation studies are being done, it usually doesn't matter if chemical studies are done on plasma or serum. In emergency situations or when time is of the essence, plasma is preferred so that one does not have to wait for blood to clot.

    If one tries to centrifuge whole blood that doesn't have an anticoagulant, such as heparin or EDTA, before 30 minutes have passed, all you will get is a mass of red cells at the bottom of the tube and a mass of yellow jello at the top, because the clotting factors haven't had the time to constrict around the red cells and form a clot. The "jello" is the mass of clotting factors surrounding the plasma. The action of centrifuging will not by itself separate red cells from serum, if no anticoagulant is present. Centrifuging blood too soon is a mistake. It is hard to extract the serum from a mass of jello.

    There is one exception to that. There are tubes with a gel separator and an anticoagulant that will separate the serum or plasma quickly. They can be spun immediately. These can be used for routine chemical tests, not specialized tests.

    When reading the directions for sending the samples, be sure to read if they want serum or plasma. Ideally, the reference lab should provide the drawing tubes so that the proper blood processing is done. I do recall from my working days that tests for antibodies were drawn in PLAIN red top tubes, without any anticoagulant or gel separator. Those components would have interfered with antibody tests. If that is still the case, then be prepared to wait for the blood to stand for at least 30 minutes while the clotting factors are activated by coming in contact with the glass tube, then wait another 5-10 minutes for the blood to be centrifuged and portioned into a transfer tube.
     
  13. Lolinda

    Lolinda after meals, I need to lay in bed for hours

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    Thanks for posting these. So in the case of these tests, such care is not needed. Just any lab procedure will do, with or without separator as long as serum is produced. And then the serum transferred into a separate tube. I got the instructions directly from Celltrend on the phone and meanwhile they are published in the instructions written by the boss of Celltrend. You find then at the bottom of the requisition form (see the attachment in the first post in this thread).
     
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  14. Gingergrrl

    Gingergrrl Senior Member

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    Very useful info if I ever get this far which right now is doubtful! But I have all of this stuff bookmarked for future reference. Thank you both for taking the time to type it all.
     
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  15. Gingergrrl

    Gingergrrl Senior Member

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    @Lolinda, I wanted to update you that I had a phone call with Dr. Heidecke from Cell Trend this morning and was able to get some of my questions answered. I called the specialty lab where I plan to draw the blood and it turns out that they can centrifuge it into separated serum and do the Fedex packaging on site! However, they need some info that I am still missing :bang-head: re: the color/name of the test tube needed and a few other items.

    I am planning to read every word of what you wrote about the process and either ask you some questions or call them back on another day. Cell Trend told me it does not have to be shipped Overnight and it can take 3-4 days to arrive but this seems strange? They said room temp is okay and does not require an ice pack, etc.

    They will be e-mailing me the full list of all their tests (I plan to do all nine of them) plus the prices, their mailing address for the shipment, etc. I realized that I do not have Cell Trend's Fedex number. Also the lab told me that my state does not allow patients to request a blood draw "at will" and requires a note from my doctor so I put in a request for this, too. They want the sample on a Monday and I have another doctor's appt this Monday morning. Ideally I want to do this as far apart from my IVIG as possible so if I cannot do it on Mon, I will have to wait another month.

    But am hoping that Cell Trend sends me the missing info and that my doctor sends me a note for the lab and that I can do it after my appt on Mon and it all falls into place. I think having these tests will be helpful for my main doctor and my Neuro. Cell Trend told me that there are two U.S. doctors familiar with these tests (one in Denver and one at Yale) but they did not give me their names and said it will be in the follow-up e-mail.

    This is a slow process but they have been very nice and am still hoping it will work out! Will PM you once I have my questions in better order. Thanks again :hug:

    ETA: Do you think you had a 24 hour shipment b/c you are already in Europe vs. it coming from the US?
     
    Last edited: Sep 28, 2016
  16. CFS_for_19_years

    CFS_for_19_years Hoarder of biscuits

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    They've probably done tests to see how stable the auto-antibodies are at room temperature. Determination of stability is a standard part of test development.

    That's standard procedure. When I was working as a medical technologist I wouldn't draw blood from my co-workers without a doctor's lab order.
     
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  17. Gingergrrl

    Gingergrrl Senior Member

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    Thanks @CFS_for_19_years for the info above. I wanted to post my latest update re: these tests. I got the letter (lab order) from my doctor approving me for the blood draw to give the lab so this part is no longer an issue. I also found out from Cell Trend which color test tube to request (Gold) for the separated serum and also the mailing address.

    Lastly, they sent me the requisition form which lists all nine autoantibody tests and their prices in Euros. If I calculated correctly, it will be approx $391 total for all nine tests (plus whatever it costs me for the actual blood draw). I plan to do this on Mon following another appt and ship it with Fedex International. The only piece of info that is still missing is their Fedex # but I e-mailed them today asking for it so hoping they will send it to me before Mon.

    These are the nine tests that they offer:

    1) Alpha1 adrenergic receptor auto antibody
    2) Alpha2 adrenergic receptor auto antibody

    3) Muscarinic cholinergic M1 receptor auto antibody
    4) Muscarinic cholinergic M2 receptor auto antibody
    5) Muscarinic cholinergic M3 receptor auto antibody
    6) Muscarinic cholinergic M4 receptor auto antibody
    7) Muscarinic cholinergic M5 receptor auto antibody

    8) Beta1 adrenergic receptor auto antibody
    9) Beta2 adrenergic receptor auto antibody

    I know it may seem obscure or useless to have these tests (which are considered experimental in the US) but I am hoping that the research in the US will catch up to this research in Germany and that my results will be useful to my main doctor and my Neuro. I do not mind being a bit of a guinea pig and only one tube of blood is needed for all nine tests. It is not covered by insurance but that is the case for many things here so I am used to it.

    If I am negative on all tests, then my doctor can rule this out and it would be the end of pursuing this route. I suspect, however, that I will be positive on some of them (no idea which ones?) and this might help further my case with my Neuro for IVIG or other treatments. Or, it might do nothing but provide me academic information for the future. If I succeed in getting the blood draw and mailing it off on Mon, I should have the results in 1-2 weeks.

    Am tagging @TiredSam b/c these are the tests I was curious about if you were offered when you were at the Charite and didn't want to take your other thread or blog off-track with this. Am also tagging @Lolinda to update you when you have time and your help has been invaluable!
     
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  18. TiredSam

    TiredSam The wise nematode hibernates

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    Answered on blog :)
     
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  19. Lolinda

    Lolinda after meals, I need to lay in bed for hours

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    They gave me the address of 1 US doctor and 2 doctors in Germany. You find these in this thread. In case you receive information on further doctors, would be nice if you could add them into that thread. - So we would have all treatment information in one place.
    Thanks! :)
     
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  20. Gingergrrl

    Gingergrrl Senior Member

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    Am all scheduled to do the test on Mon and I will definitely post if I get the names of doctors from them. I suspect I will get this once I get the results and that the whole thing will take a couple of weeks.
     

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