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Celltrend Results - I am very happy

Discussion in 'Rituximab: News and Research' started by andybonse, Aug 1, 2018.

  1. andybonse

    andybonse

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    Hey all,

    Just got my celltrend blood test results back and I am positive for 6 out of 11 tests.

    Anti AT1R Antibodies <10.0 U/ml: negative 10.0 – 17.0 U/ml: at risk > 17.0 U/ml: positive 59.4 (positive)

    Anti ETAR Antibodies <10.0 U/ml: negative 10.0 – 17.0 U/ml: at risk > 17.0 U/ml: positive 60.7 (positive)

    Anti a-1- adrenergic Antibodies <7.0 U/ml: negative > 7.0 U/ml: positive 11.4 (positive)

    anti-Muscarinic Cholinergic Receptor 2 - Antibodies <9.0 U/ml: negative > 9.0 U/ml: positive 18.2 (positive)

    anti-Muscarinic Cholinergic Receptor 3 - Antibodies <6.0 U/ml: negative 6.0 – 10.0 U/ml: at risk > 10.0 U/ml: positive 16.3 (positive)

    anti-Muscarinic Cholinergic Receptor 4 - Antibodies <5.0 U/ml: negative 5.0 – 7.0 U/ml: at risk > 7.0 U/ml: positive 47.6 (positive)

    Very pleased that I have something solid and evidence to my dysautonomia and CFS symptoms. My next step, no idea exactly but trying to get to see a specialist in autoimmune diseases and possible talk about IVIG.

    Wow, so many answers could be answered from such a simple set of tests.

    - Andy
     
  2. Eve18

    Eve18

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    I understand your feelings. Glad to hear that you have some answers.

    Did you need a doctor order to send with your blood sample?
    Do you already know a doctor who is familiar with this test?

    I'd like to do this test, too. Probably I won't find anybody who will recognize this test in my hometown so I'm not sure what to do.
     
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  3. Gingergrrl

    Gingergrrl Senior Member

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    I am glad it worked out and you were able to do the testing. I was positive for 7/9 on Cell Trend in 2016 (before they offered eleven tests). I will be doing all 11 tests in Sept to see where my autoantibodies are now, which includes the two new ones and see if I am positive for them.

    I agree, it is very helpful info to have and am hoping you will find a specialist to discuss IVIG or other treatment options. What area do you live in?

    I agree.

    Are you in the U.S.? I think it may vary from state to state but in my state, I was required to provide a doctor's note for the blood draw from a specialty lab (but nothing beyond that). I called the lab in advance to see if they could do what was needed. My doctor now has a kit for the Cell Trend testing but he did not have this when I did the testing in 2016.
     
    Last edited: Aug 2, 2018
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  4. andybonse

    andybonse

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    No and no, did it all privately, just paid someone to take my blood and centrifuge it then sent it off.

    @Gingergrrl thanks :), I am not too sure how much the A-1 receptor results are as they are only 4.2 points above what is classed as abnormal, but I am going to re-do all the tests in 6 months, I believe I was having a good day so maybe my antibody levels were lower than usual? Do you think 11.4 would be a high enough value to think they are having a negative effect?

    As clearly with the Muscuranic and AT1R receptors etc, they are huuuge ranges and can't doubt they are causing a lot of my symtpoms

    But them with the very high numbers are surely indicative of my symptoms, especially with so many positive too.

    I just wonder what other tests I should have, I am going to push for anti phospholipid syndrome testing and a few others, any you can think of that would go well with testing for autoimmune POTS?
     
    Last edited: Aug 1, 2018
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  5. Eve18

    Eve18

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    Thanks @andybonse and @Gingergrrl.
    I'm from US. I'll call a lab to see if they can draw blood without a doctor's order.
     
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  6. junkcrap50

    junkcrap50 Senior Member

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    Are you currently or will you be on any autoimmune / rheumatology drugs when you retest your autoantibodies? I know you've been doing IVIG and have had success. But does anyone how do doctors normally retest autoantibodies after having prescribed autoimmune drugs?

    I would like to test my autoantibodies using Celltrend, but have been on Plaquenil for sometime.
     
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  7. crypt0cu1t

    crypt0cu1t IG: @skagginwagon

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    Congrats man! I also tested positive for a few antibodies and autoimmune markers (AChR binding, Salivary Protein 1, high white blood cells, high esr, high crp)

    I want ti do the celltrend and cunningham panel so bad as both my doctors suspect a form of autoimmune encephalitis. How much did the panel cost you?

    Have you ever done the Mayo ENS1, PAVAL, Cyrex array 5 or quest autoimmune neurology panels?
     
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  8. Lisa108

    Lisa108 Senior Member

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    Here is a link to the homepage of Celltrend, where the tests and costs are listed (english version).
     
  9. Gingergrrl

    Gingergrrl Senior Member

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    Are you going to re-do the test in six months after having treatment or re-do it without any treatment to see if you get similar results back the second time? I am not sure that you having a good day vs. bad day (on the day of the blood draw) would change the autoantibody levels found (but others might know more about this than I do).

    I truly have no idea. I know re: the calcium channel autoantibody that I have, some Neuros have said that the level does not correlate with the symptoms, meaning that someone could have a low level but very severe symptoms and another person could have a high level and very minor symptoms. But I am not sure if this also applies to the Cell Trend autoantibodies (and I am also not even sure that all Neuros agree on this re: the calcium channel autoantibodies).

    I would assume that they are causing symptoms, too.

    If you are planning to do IVIG, especially high dose IVIG for autoimmunity, I would do the anti phospholipid panel and make sure it is negative (b/c if positive, you are at a much higher risk of getting a blood clot from IVIG). I think another useful panel would be one of the autoimmune panels from Mayo like DYS1 or PAVAL.

    I think it varies per state but in my state, I was able to go to a specialty lab with the instructions from Cell Trend but required a doctor's note for the actual blood draw.

    I am now completely done with IVIG and will not be re-testing autoantibodies until Sept when there has been at least an eight week minimum from my last IVIG. Your autoantibodies are never truly accurate after having IVIG but there is nothing I can do about that and waiting eight weeks is a long enough period of time per both of my doctors.

    I will still be doing Rituximab (next infusion which is #6 is tomorrow morning) but my doctor said that will not have the potential to provide false positives like IVIG could. Rituximab keeps my B-cells at zero so my autoantibody levels should all be lower now (unless something has a false positive from prior IVIG). All of this is me paraphrasing and don't quote me on anything and please ask your own doctor!

    I have never taken Plaquenil and am not familiar with how it affects autoantibodies. Are you taking it for Sjogrens?

    I don't think the Cell Trend panel would give you any information re: autoimmune encephalitis and I have never done the Cunningham Panel (and can't remember what it tests)? I'm not sure if you are asking me how much Cell Trend costs (or asking someone else?) but when I did it in 2016, it was somewhere between $500 and $600 (I can't remember the exact amount) if you include the blood draw at specialty lab, nine Cell Trend tests, Fedex Overnight International cold pack box for shipping, and bank transfer into Euros plus bank fee. A lot of this is streamlined now (and Center for Complex Diseases has a kit for doing Cell Trend test and I believe you can pay with PayPal and don't have to do the bank transfer into Euros, etc). I can tell you exactly what it costs when I re-do it in Sept.

    Also not sure if you are asking me but I have done PAVAL from Mayo in 2016 (but not the others you mentioned). When I do the tests in Sept, I will be doing the DYS1 Panel from Mayo instead of PAVAL b/c it also includes anti GAD65 and we want to test if I remain positive for that one, too.
     
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  10. andybonse

    andybonse

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    @Gingergrrl I've just remembered something actually,

    With the Anti AT1R Antibodies being high and positive, a few years ago I did a Angiotensin ii blood test.

    It was 8 and the range is 20-40 so that's really low. So from what I've read I think the AT1R AB's have a agonistic effect activating the receptor, which would explain why the body isn't signalling to make more angiotensin ii?

    Of course these are just my ideas, I need to find a doctor who has the time to sit down and explore all of this properly. Everyone I talk to seems that it blows their mind lol.

    My potassium levels were always lowish too, then I started fludrocortisone which dropped them big time so had to have a supplement.

    Somethings definitely going on and the pieces of the puzzle are adding up, I think IVIG is in my future when I find the right doctor, I'm in the UK so finding one is going to be difficult I bet.

    Andy
     
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  11. Gingergrrl

    Gingergrrl Senior Member

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    I wish I understood all of this better so I could give a more intelligent reply! When I did the Cell Trend testing in 2016, there were only nine autoantibody tests and they did not yet have the angiotensin test. I will be doing all 11 tests in Sept so we will see if I have the anti AT1R Ab or not. Although it is possible that I did have it at some time but now test negative from IVIG and Rituximab. But at least I can compare the other nine tests to my levels in 2016.

    My Potassium level is also always low (without taking a prescription supplement with 20 MEQ per day called Klor-Con). I tried Florinef in 2014 but did not do well with it at all and had to stop. Does low Potassium relate to that autoantibody (or am I totally misunderstanding)?

    Good luck and I hope you are able to try IVIG!
     

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