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Celltrend worth it if I don't have POTS or PEM?

Discussion in 'Diagnostic Guidelines and Laboratory Testing' started by Dmitri, Sep 21, 2018.

  1. Dmitri

    Dmitri Senior Member

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    I've considered saving up for the Celltrend POTS-diagnostics panel because of the valuable information it may provide. I experience a lot of fatigue, but no PEM. I have many autonomic symptoms but no tachycardia, with positive testing for small fiber neuropathy being a possible explanation. Could the autoantibodies it tests for still pertain to my symptoms? They seem more generalized than the panel names suggest, and I already have positive ANA and early Sjogren's.

    I'm in a bad financial situation and it would be a big loss to pay for another expensive test panel only for it to come back with no answers.
     
    Last edited: Sep 21, 2018
    taniaaust1 and Gingergrrl like this.
  2. Markus83

    Markus83

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    Even if the tests would come back positive, how would this affect your treatment? I would better invest the money in searching for chronic infections.
     
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  3. Dmitri

    Dmitri Senior Member

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    Having more proven autoantibodies would increase the chances of insurance covering immunomodulatory treatment.

    Which chronic infections are being associated with CFS and becoming detectable, besides the herpesviruses?
     
  4. Markus83

    Markus83

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    Which immunomodulatory treatments? IVIG won't be covered anyway, and I don't know other treatments (of course MTX and corticosteroids, but these are immunosuppressants).

    Infections: Depends on your symptoms and history. As you don't have PEM, it seems you don't really have CFS. Infections to consider are besides the herpes family: Lyme disease and co-infections like bartonella, babesia, chlamydia, mykoplasma, yersinia, parvo B19, coxsackie virus.

    Do you have to pay the blood parameters on your own or are they covered by insurance? I find it useful to get an immunological workup to see if there is an ongoing immune process. But it's quite expensive and I won't pay for it privately. I think about T-Cell activation markers, interleukins 1b + 6, TNFalpha and so on.
     
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  5. pibee

    pibee Senior Member

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    With Sjogrens its worth doing it as antibody to muscarinic 3 receptor is according to some studies found in 93% of patients

    Maybe you can do just M3 and M4, if positive just call CellTrend to analyse the rest too
     
    Last edited: Sep 21, 2018
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  6. Dmitri

    Dmitri Senior Member

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    For treatments, I had other biologics in mind. Rilonacept (IL-1 inhibitor) for Behcet's was covered and I started it last week, but I'm not seeing any effect so far. IVIG would probably have the best chances because it's so broad-acting, but it's not likely to get covered, at least not without a very long process of appeals, denials and ICD codes. Having more confirmed autoantibodies would help with that, at any rate.

    Standard bloodwork is covered by insurance, such as the CBC and IFE which were both completely normal for me. Tests for cytokines probably wouldn't be covered because AFAIK they're just considered "experimental" for the time being, but I'd have to find out more.
     
  7. Gingergrrl

    Gingergrrl Senior Member

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    @Dmitri Forgive me if have already asked you this but have you done any autoantibody panels offered through Mayo Clinic? I believe, as do my doctors, that the Cell Trend panels are useful and for me, confirmed that I had Autoimmune POTS and a total picture of complete autoimmune chaos.

    But having said that, I do not believe that U.S. insurance companies would accept them b/c these tests are not (yet) offered in the U.S. Versus, the Mayo panels are well-respected by insurance companies. I am not endorsing Mayo for treatment but their blood tests are solid. Have you done the PAVAL or DYS1 panel (or others depending on your symptoms)?

    If your goal is doing tests for insurance approval of IVIG, you have a better chance with the Mayo panels (assuming something comes back positive).
     
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  8. Dmitri

    Dmitri Senior Member

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    I had Mayo's PAVAL done as well as GAD65 and NMDA, they were all negative, but they were worth testing for and covered by insurance.

    Have you ever gotten this test? https://www.joincyrex.com/the-cyrex-system/array-5-multiple-autoimmune-reactivity-screen

    It's from a US-based lab but it's not as established as any of Mayo's tests. Appears to be around $700 plus additional expenses of traveling and paying an out-of-state doctor out of pocket because NY always has to be ridden with an asterick, so many tests not approved here.
     
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  9. Gingergrrl

    Gingergrrl Senior Member

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    Thanks for reminding me and hopefully I will not ask you that again!

    I have never done that panel. I just re-tested the Mayo DYS1 Panel yesterday to compare the results to early 2016 (pre-treatment).
     
    Dmitri likes this.
  10. Research 1st

    Research 1st Severe ME, POTS & MCAS.

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    Apparently the Cell Trend test has less than ideal sensitivity as it's an ELISA?
    For example I've had it done twice. The 1st one was abnormal and the 2nd one normal. So one minute I was like 'yay' I've got Autoimmune POTS and might get some immunotherapy and the next, err, there's nothing to see and now I'm not getting any treatment.

    Tube type:
    The lab won't send you the tubes in a kit, at least not outside Germany. Instead, you have to source them yourself which is rather unorthodox for a laboratory in my view, as I've used many. To find the tubes, I had to go begging my local hospital, who of course were suspicious why some patient turns up in a wheelchair looking like a ghost begging for some SST tubes with a 'story' why they want them. In this day and age, it's practically impossible to get hold of them in person as naturally people are curious why you haven't been sent a kit from the laboratory.

    Having said that, for a research level specialist test, the prices for the assays are very cheap and if it was a 'proper' test it would be at least 3x the cost due to marketing overheads and glossy brochures. I had an issue with the tubes because one minute I'm told they need to be plain glass tubes (with no preservative) and the next, no, you can use SST's. Maybe I screwed it up and it wrecked my own results by incorrect sample handling? Who knows, I did let it sit upright for 30 mins though to clot. At least you only need to send a tiny amount of blood after spinning it - which is again hassle to arrange. I think it was 2ml serum for all the tests combined which is great if you're sensitive to blood loss.

    Postage outside Europe or far away from Germany:
    I wouldn't advise using Cell Trend unless you live in Germany or near it in bordering European countries because if you live further away, it's basically impossible to get the blood guaranteed to get there within 24 hrs because the airport for the major postal services isn't near the laboratory and takes a while to drive there. I learnt that by both times looking at an 'app' you can use to see when the sample got there, one time it was sat there overnight as the delivery truck got stuck in traffic. As a patient, you don't really think about these things, you just presume you pay for the most expensive postage and if they say they 'might' be able to get in there in 24hrs, you take it as a 'will' be able to.

    What is odd to me, is the POTS patients I've spoken to getting humongously high results on the tests are not housebound and bedridden, but more mobile. Naturally they're happy and I'm pleased for them as they deserve help. Yet it confuses me, the patients like me, only show a few positive results but are still smashed with POTS? So either I don't have autoimmune POTS at all, or I do, and the test isn't reliable, or the disease fluctuates so much that it can miss it? I have no idea. I do realise antibodies fluctuate, but I haven't spoken to another patient yet who's had a positive/negative result.

    I'm waiting to see if a better assay comes out for POTS that doesn't use ELISA. I think it will do but when I don't know. In the meantime, if I was in America and had POTS I'd try and get the Mayo Clinic Dysautonomia panels instead or in addition.
     
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  11. scisolver

    scisolver

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    @Research 1st Does it have to be 24 hours? I sent it without a cold back and Fedex said the fastest would be 2 days. I sent it using the priority level that CellTrend said. I was worried about not using a cold pack. If I have to do it again I'll have to find some kind of container I can put it in with a cold pack. I couldn't find anything small like that. For some reason the phlebotamists don't have shipping containers. They do have tubes and have no problem giving me tubes. I think it is stupid to send a an empty box and tubes. A "kit" is nothing more than some tubes and a box, which any phlebotomist should have to send the specimen to the lab. It makes no sense to send these things across a country or to another country, but I admit it was hard not having these.
     
  12. Gingergrrl

    Gingergrrl Senior Member

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    @scisolver I just sent the serum sample to Cell Trend (to compare my results to those of 2016 pre-treatment) and it absolutely does NOT have to arrive in 24 hours and you do not have to include a cold pack (unless it is an extremely hot day or heatwave). I confirmed this all in 2016, when I first did the Cell Trend testing with the head of the lab, Dr. Heidecke. He said that 48 hours is okay and even up to 72 hours is okay (but 48 is preferred).

    My serum sample got from Los Angeles to Cell Trend in Germany in under 40 hours using Fedex Overnight International. I used a kit from my doctors office and arranged for a home phlebotomy service to come to my home. In 2016, I did not have a kit and did it at a local Specialty Lab but sadly this lab has since shut down. So my doctor recommended a home phlebotomy service and they were amazing. My doctor's office said to do the blood draw and mail the sample on a Monday or Tuesday so it arrives at Cell Trend before Fri. If it were to sit over the weekend, then it would no longer be good.

    Cell Trend sent me an e-mail this morning that my sample arrived intact and they will e-mail me the results and invoice for the eleven tests in approx two weeks.
     
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  13. scisolver

    scisolver

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    @Gingergrrl OK, good information thanks. I just checked on the status of the shipment and it said it is Clearance Delay - Import. Fedex said they did not have overnight and just the priority 2 day to that part of Germany. That is what the instructions said to ship though, international priority. I have sent things overnight with Fedex before, but that was all domestic. Shipping was about $130.

    It was supposed to be delivered by 6PM (within 48 hours) yesterday at the very latest. I wonder if they think it is a product. The FedEx guy asked me to tell him if it was a new or used product. I told him it was not a product and I had already told him the contents of the package was "serum" and it was exempt personal medical and it was in the official FedEx Clinical package bag specifically for sending such things. I think my FedEx Clerk was mentally in over his head.

    The phlebotomist also forgot to centrifuge the serum, so I had to go back after getting to fedex and go back to hospital the next day to have it done right.
     
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  14. Gingergrrl

    Gingergrrl Senior Member

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    I replied to you in another thread before finding this one. That is so odd for Fedex to tell you that they don't have the "International Overnight" option which is what I used. My shipping was $107 (slightly less than yours) and it seems like they really overcharged you if not doing the overnight service. I hope you will be able to get a full refund (since you wrote in the other thread that it got stuck in customs and did not get there in time). Are you in the US?

    :bang-head::bang-head::bang-head:
     
  15. scisolver

    scisolver

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    @Gingergrrl Yes, I'm in the USA and I'm on the east coast, so I'm closer to Germany than you are.
     
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  16. Gingergrrl

    Gingergrrl Senior Member

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    That is so frustrating @scisolver and I think Fedex just used the wrong shipping method. I will reply to your other questions in the other thread (so it is all in one place and less confusing)!
     

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