Results of the German Cell Trend laboratory for POTS

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@Hip @Gingergrrl @kangaSue

Hello, I have finally sent my blood to the German CellTrend and I already have the results. I have given posivo in an auto antibody and in risk in another. In Spain they do not usually give inmonoglobulins, do you think that with these results I could use them? I understand that having a single positive antibody car would suffice, I do not think it is necessary to have several different ones. I understand that that single auto antibody is bugging me and causing POTS. Here the results:

 
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pibee

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yes alpha1 is most important for POTS , so far i didnt even hear anyone w POTS not positive for it.

you could use the results, yep... have you ruled out Sjogrens?

check 'novel Sjo antibodies' too, you're at risk for M3, that's linked to Sj i think, or M2 (II forgot, google it)
it could help with getting IVIG if you prove it

good luck
 
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@pibee

but I understand that not all POTS are of autoimmune origin. Those that are not autoimmune should not test positive in any auto antibody.

Regarding Sjögren, I have not done antibody tests but I do not have the typical symptoms. Even so if with 1 positive is enough, I will try to be prescribed.

Do you think that with immunoglobulins I will improve or I will be cured?
 

Belbyr

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I went to see Dr Chemali in Norfolk. He is the best doctor in the U.S. for actually digging to see what could be causing your dysautonomia.

He could find no cause in me, but he thought I fit more of the CFS picture and not so much the POTS
 

Research 1st

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@Hip @Gingergrrl @kangaSue

Hello, I have finally sent my blood to the German CellTrend and I already have the results. I have given posivo in an auto antibody and in risk in another. In Spain they do not usually give inmonoglobulins, do you think that with these results I could use them? I understand that having a single positive antibody car would suffice, I do not think it is necessary to have several different ones. I understand that that single auto antibody is bugging me and causing POTS. Here the results:
Hello. I am glad you have positive results, hopefully in time you can try immunotherapy, although I imagine you'd need more evidence than a single blood test, probably other tests too before having IVGG therapy for POTS? I'd get extra blood tests like IgG subclasses (IgG1, IgG3, IgG3, IgG4), IgE, Lymphocyte Subsets, T/NK/B Cell activation markers etc. I say this as it's unlikely a doctor is allowed to prescribed powerful ad potentially dangerous drugs because of one abnormal blood test result (Celltrend) and also take on board these are only experimental tests, they are not validated tests used in hospitals, just for research only.

I used to be very enthusiastic about this Celltrend test, but now I am confused about the accuracy, because the test collection method seems up to the client, up to us, to arrange. If like me, you're an amateur and have no doctor or nurse, then things get tricky with trying to access blood tubes, to get permission to buy them as well as naturally a hospital or medical supply store is suspicious why a patient is requesting empty tubes for a test, as they expect a special test kit from Celltrend - which they don't supply us!

Please can you answer the following if possible? I'd appreciate it:

1) Outside Germany, CellTrend laboratory tell me they can't supply test tubes (POTS/CFS test kit), and you have to source the blood tubes yourself. Did you experience this as well? When I sent my blood off, I was told that the test will probably fail, because the 'tubes aren't sterile'. Then another nurse told me this was incorrect, and the tubes should be SST or the serum will be damaged, because there is no preservative in the glass tube. So I get conflicting messages from the people collecting my blood sample at home.

2) If so, did you use plain glass sterile tubes from a hospital lab or did you use an SST (serum separator tube)?

3) After taking blood, did you let the blood clot for 15/30 minute sitting upright,, centrifuge it (spin) in a hospital lab, and then post the blood off to the lab? It's literally impossible I found to get the blood from your arm, to a hospital in a few minutes. It takes time and you have to have a machine immediately on hand to 'spin' the sample (centrifuge) it.

4) Did you get it confirmed by Celltrend it arrived to the lab within 24hrs? Outside Germany, FEDEX/DHL cannot promise to get blood to the laboratory within 24hrs.

5) Did you also notice if Celltrend printed the date they tested your sample? I found this very strange mine was missing both times. All laboratories always state the time and date, my results didn't put this, so for all I know it took a week to test it.

I would like to do this test again, for the 3rd time, but I think it would be great to hear from a patient how they collected the blood, what type of tube, and if their sample is dated on the test result to prove how long it took to test the blood sample. Personally, I think mine sat in the postal package for days and got too hot, I can't prove that though, all I know is phoned up and apparently they were on holiday as they didn't respond for days, not really a good sign if no one is in the lab, but your blood is meant to being processed.

Thanks for any feedback.
 

Learner1

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I had my blood collected in California, by my doctor, who seemed to know tge correct collection and mailing procedures. It was FedExed from California to Germany - no idea how long it took. Can someone at your doctor's office not ask CellTrend the pertinent questions?

@Belbyr Did you do the CellTrend test? I see a dysautonomia doctor and he was unfamiliar with the CellTrend test at first, but buys into it being a valid cause...

@men100 70% of IVIG prescribed in the US is for autoimmune disease, although these antibodies and autoummune POTS are not a common autoimmune scenario for the prescription. I was lucky and also had immunodeficiency, so @Research 1st. 's advice to get immunoglibulins and subclasses tested may be helpful to you. There's also the attached case study you can share with your doctor.

I had a1-adrenergic and M4 positive. It's cause a high blood pressure variant of POTS for me
So far, I've tried beta blockers propranolol and naldol, which worked somewhat and not at all, carbidopa, which did nothing, and now carvedilol, which is working a little better as it is an alpha adrenergic receptor blocker. I also take pyridostigmine (Mestinon) which has helped me stand and exercise more successfully.

The real issue is zapping it in the long run as the meds have been frustrating. I've improved on autoimmune dose IVIG for 15 months and am now considering Rituximab, which my doctor has had some success with with a few patients and an immunologist I saw for a second opinion was worth trying - ICIG/Ritucimab have been used with other autoimmune problems with some success.
 

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Gingergrrl

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@Hip @Gingergrrl @kangaSue Hello, I have finally sent my blood to the German CellTrend and I already have the results. I have given posivo in an auto antibody and in risk in another. In Spain they do not usually give inmonoglobulins, do you think that with these results I could use them? I understand that having a single positive antibody car would suffice, I do not think it is necessary to have several different ones. I understand that that single auto antibody is bugging me and causing POTS. Here the results:
@men100 I am so sorry, I did not see that you tagged me yesterday and I don't seem to get all my alerts. I've done the Cell Trend testing 3x (we might have talked about this before but I am not certain)! I did it twice in 2016 (pre-treatment) and was positive for 7/9 autoantibodies. There were only nine Cell Trend tests offered at that time vs. eleven now.

In 2016, I was positive for 7/9 both times and my doctor felt it confirmed that I had Autoimmune POTS plus the anti-muscarinic/cholinergic Abs were weakening my muscle strength. I also had several (non Cell Trend) autoantibodies in 2016 from testing from Mayo and a few other labs (OMI, Quest, Stanford) and it was a real mess to sort it all out. Now in 2018, I was positive for only 4/9 Cell Trend (so it improved post-treatment) plus I was positive for one of the new POTS Abs (anti ETAR), and almost positive for the other POTS Ab, anti AT1R (at 16.1 and 17 was positive).

I can't advise what your doctor would do in Spain, and many US doctors do not consider the Cell Trend testing to be valid b/c it is not from the US (which is absurd IMO). Luckily my doctor takes it seriously and I was his first patient to find the test and talk to Dr. Heidecke on the phone in Germany with a whole list of questions! My doctor agreed to order it for me and now he tests (almost) all of his patients.

I am not sure if this is helpful but hoping it is! Do you have a doctor in Spain who is willing to work with you or to test you for other autoantibodies? Is your ANA titer positive?
 

Gingergrrl

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yes alpha1 is most important for POTS , so far i didnt even hear anyone w POTS not positive for it.
@pibee I didn't realize that and thought that the beta-adrenergic Abs were the most significantly correlated with POTS? I wish I understood more about each autoantibody!

but I understand that not all POTS are of autoimmune origin.
It is believed at this point in time that not all POTS is Autoimmune in origin. But there are some doctors/theories who believe that all POTS is an Autoimmune disease. I am hoping that with more time and research, this will be proven one way or the other.

Do you think that with immunoglobulins I will improve or I will be cured?
I don't think there is any way to predict in advance who would be a responder to IVIG.

I went to see Dr Chemali in Norfolk. He is the best doctor in the U.S. for actually digging to see what could be causing your dysautonomia.
I have heard great things about Dr. Chemali but have never seen him.

Thanks for any feedback.
I hope this is helpful and please ask me more questions (which I will answer tomorrow) if it is not. The first time I did the Cell Trend testing in 2016 it was at a Specialty Lab who did everything from the blood draw to mailing it with Fedex Overnight International. The only thing I had to do was provide a doctor's letter for the blood draw which is required in my state (but I am not sure how this works in other states or countries).

The second time I did the testing (also in 2016), it was part of a research study (of the immune system) at my doctor's office. The study ended up not happening but I got to do the Cell Trend testing regardless. This is why I am certain it is valid b/c the first sample was sent to Germany with my real name from Los Angeles. The second blood sample was sent to Cell Trend as part of a research study (without my name on it) from a city that is seven hours north of me. Both samples (prior to my treatment) came back positive for 7/9 autoantibodies (vs. the original poster of this thread was only positive for one autoantibody) so it is not accurate when people have said that everyone is sent the same results-- and you didn't say that, just to clarify, but others have!

Lastly, when my doctor wanted me to repeat the Cell Trend testing (just recently in 2018), I was going to go back to the Specialty Lab but they had closed down. So instead I used a highly rated home phlebotomy service. I had never done that before but it was the easiest route b/c they came to my home and drew the blood and followed all the instructions perfectly (per the Cell Trend kit) and took it to Fedex and again I shipped it Overnight International. It was more expensive to use the home phlebotomy service but it was worth it in this particular instance.

Also, I was told by Dr. Heidecke at Cell Trend that as long as the blood sample gets there from the US (or Europe, etc) within 72 hours it is viable and does not have to be 24 hours. He said to ship it only on a Mon or Tues so it does not arrive too late and sit over the weekend. He said it does not need a cool pack unless you are sending in extremely hot weather (and room temp is fine).

As soon as you ship it, you are supposed to e-mail Cell Trend your info along with the Fedex tracking number and then they send a confirmation e-mail once they receive it. Both times that I sent it, it was received in Germany (from Los Angeles) in approx 48 hours. I do not know about the second time (that was part of a study) since I had nothing to do with the shipping.

I hope this helps and best wishes if you decide to try it again!
 

pibee

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Do you think that with immunoglobulins I will improve or I will be cured?
I really hope you get lucky and cured, although it doesn't seem to be the norm.It's hard to not think abut the cure, I know, I keep thinking in black and white terms too
 

Sing

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My new doctor in California sent off my blood for this test and I will be very curious about the results. I have hypogammaglobulinemia, bad hypotension (not POTS), SFN and what seems like a long standing but case of Sjogren’s too, so hopefully the results from CellTrend will help clarify things and lead to better treatment than I had before with my nice but ME/CFS-uninformed doctors of the past. I would like to be able to get IVIG.

Given that I am getting ever older and increasingly marginal with my physical problems, I decided to go the ME/CFS specialist route finally and pay for the tests, etc. so I could try to slow or reverse my downward course.

I have also recently started LDN and Mestinon, titrating up from very low doses, but it is too soon to tell if they will help. Mestinon so far isn’t completely easy because with its nerve transmission facilitation, it is also increasing my usual aching/pain somewhat, as well as my oversensitivity to noise, light and smell. Just a slight increase in trouble there am a bit worried if I will be able to go up enough on the dose to get real help with hypotension. However, maybe one’s body accommodates to Mestinon—? Any thoughts on this, @Learner1 ?
 

Learner1

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Hmm...ive had no trouble with Mestinon. Started on 10mg 3x a day and am now on 60mg. I don't have pain as a rule and do have light and sound sensitivity but its been better in general on Mestinon.

Since you also have SFN, you might want to look into a MitoSwab test for Mito function. Damaged mitos can produce neuropathy. Im on a mito cocktail of NT Factor, phosphatidyl choline, carnitine, riboflavin, CoQ10, BCAAs and Bs.

How come your doctor hasn't put you on Florinef?
 

Sing

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Hmm...ive had no trouble with Mestinon. Started on 10mg 3x a day and am now on 60mg. I don't have pain as a rule and do have light and sound sensitivity but its been better in general on Mestinon.

Since you also have SFN, you might want to look into a MitoSwab test for Mito function. Damaged mitos can produce neuropathy. Im on a mito cocktail of NT Factor, phosphatidyl choline, carnitine, riboflavin, CoQ10, BCAAs and Bs.

How come your doctor hasn't put you on Florinef?
I am on a low dose of Florinef, .05 mg, which doesn’t do much of anything as far as I can tell. Any larger dose and I get instantly depressed. My body isn’t the type for ankle swelling or pooling of blood in the legs, so I guess the blood stays in the center of the body. One study showed that is where it usually is for PWME. So compression stockings and Florinef don’t seem to do much. I get a lot of salt and potassium. And usually take Midodrine too, which contracts surface blood vessels to concentrate the blood inside. However, Midodrine makes me cold and that is a stress, so sometimes I don’t take it. It only improves my bp a small amount anyway.

But back to the CellTrend subject, I just got back my results and have a positive result for every single one they are now testing, with the exception of one antibody for which I had an “at risk” result. So I guess there IS an autoimmune process going on! I feel happy because no doctor before ever looked into these aspects of autoimmunity before. Then I was just tested for the better known illnesses like Lupus, and since, like a lot of PWME, my condition did not fall into the usual boxes, I fell into a question mark/unknown category and they did not know what to do with me.
 

Sing

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That's lucky, qualifying wirh a diagnisis of CVID is the easiest way to go.

IVIG has been helpful, but like riding a roller coaster some days....:jaw-drop:
So far I have just gotten the label of Hypogammaglobulinema but not yet CVID. Had not seen a specialist in ME/CFS before however, to order maybe more appropriate tests, so I don’t know if it is a sure thing I would qualify for IVIG, but I sure hope so. I don’t look forward to side effects and problems with the infusions, if that happens, but I really look forward to rolling back some of the ongoing damage to my nervous system, etc. :bang-head: I want to regain a more viable body and brain, if at all possible:woot:
 

Gingergrrl

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I would like to be able to get IVIG.
From everything that you described, you definitely sound like a candidate for IVIG (since you meet criteria both immune deficiency and autoimmunity).

However, maybe one’s body accommodates to Mestinon—?
I was not able to tolerate Mestinon at 1/8th of a 60 mg pill (I guess 7.5 mg) back in 2014. It is possible that I would be able to tolerate it today b/c my entire immune system and body are different. But at the time, it gave me respiratory depression.

... Florinef don’t seem to do much. I get a lot of salt and potassium. And usually take Midodrine too, which contracts surface blood vessels to concentrate the blood inside. However, Midodrine makes me cold and that is a stress, so sometimes I don’t take it. It only improves my bp a small amount anyway.
I also did not tolerate Florinef (normal dose) in 2014 but I found Midodrine very helpful and had to play with the dosing a lot to find what worked for me. It often did not raise my BP on an arm cuff but still improved my shortness of breath (at that time) and my doctors felt this was due to "preferential perfusion" and that with Midodrine, I was getting more blood perfusion of my heart and lungs when I stood up. I still take Atenolol and Midodrine today.

But back to the CellTrend subject, I just got back my results and have a positive result for every single one they are now testing, with the exception of one antibody for which I had an “at risk” result.
Wow, so you are positive for 10 out of 11 autoantibodies?! You win the grand prize LOL :trophy: ... Have you been tested for any of the Mayo autoimmune dysautonomia or paraneoplastic panels?
 

Sing

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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. Probably I will never know how BEST to proceed. Some of this is trial and error.

The slow titration up I am doing with LDN is ok right now at my starting dose of .5 mg. I hope I will tolerate it when it gets to a more therapeutic level. Symptom relief is great but I would like some healing too.

I don’t think I have had the two panels you mentioned last, but in the blur of testing, I might have missed something. I will look those up so I know more.

Thanks again!
 
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You can see my results login to see.


I have the AT1R highly elevated as well as the Alpha-Adrenergic-1 and Muscarinic-Cholinergic-4 antibodies. These latter two are elevated in people with dysautonomia according to presentations from Dysautonomia International.

So, as far as I'm concerned I have dysautonomia, or autoimmune dysautonomia which is causing my ME/CFS symptoms among other symptoms.

I also have a prescription for Mestinon and Florinef. I got the Florinef filled and think I might try it. I'm supposed to take .1mg at bed time. I'm not likely to try the Mestinon at this point from the bad things I've read about it involving gulf war illness (which is basically like ME/CFS) and also being a choline esterase inhibator and I've been very sensitive to anything that inhibits that enzyme from foods in the past, which I discovered on my own. It makes me super stimulated, anxious and causes worse insomnia.
 
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Learner1

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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?