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help with Cell Trend results from CFS/POTS panel

Discussion in 'Diagnostic Guidelines and Laboratory Testing' started by MartinK, Jun 18, 2018.

  1. MartinK

    MartinK

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    Hi all!
    I finally have my CellTrend results!

    I made that from some recommendations here, because my type of dysautonomia/static intollerance is still crazy. Some treatment help me a lot (like HBOT) for some symptoms, but standing or longer walking limited me still a lot...and make me lot inflammation and pain in my muscles!

    I made all tests from panel, and this is positive:

    - Anti-a-1- adrenergic Antibodies (<7.0 U/ml: negative, > 7.0 U/ml: positive) RESULT = 24.7 (positive)
    - Anti-b-2- adrenergic Antibodies (<8.0 U/ml: negative, > 14.0 U/ml: positive) RESULT = 13.7 (at risk)
    - anti-Muscarinic Cholinergic Receptor 4 - Antibodies (<5.0 U/ml: negative, > 7.0 U/ml: positive) RESULT = 15.1 (positive)

    Can anyone give me some explain and advice? I will go visit my doctor next month, I would like to get ready, proposed further treatment.
    It's hard for me to understand...and my english is not great. :-/

    thanks a lot!

    Martin
     
    Last edited: Jun 18, 2018
  2. Ema

    Ema Senior Member

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    I wonder what part of the world you are in, @MartinK? I think that may have something to do with your treatment options.

    Do you have any other positive antibodies?

    @Gingergrrl was able to get IVIG and rituximab based on a strong case for autoimmunity, but she was positive on most all of the CellTrend and had some other autoantibodies too.

    You might also look at midodrine. It’s an alpha adrenergic agonist that might help improve the function of that system.
     
  3. MartinK

    MartinK

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    Yo, hi Ema! Thanks for your answer!
    Im from Czech Republic (heart of Europe :))

    For me its really hard to understand this problems with adrenergic & muscarinic receptor antibodies...and treatment.
    I read some studies, but Im not understanding of it...my poor English skills :-/

    I tested full panel of CFS/POTS and only this auto-antibodies are high.

    Im on SCIG for some time, half year +- , but most helpfull for me in HBOT right now.

    KDM still told me about Lyme, but Im not sure with it...and Im not sure and dont know some possible connections with it.

    Thanks ;-)


     
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  4. Malea

    Malea

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    Gingergrrl and MartinK like this.
  5. Gingergrrl

    Gingergrrl Senior Member

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    @MartinK Please do not feel bad and I am a native English speaker and all of this stuff is still very challenging for me to understand!

    I was positive on 7/9 Cell Trend Autoantibodies (and we ran the test twice several months apart just to be certain and both times it was 7/9). At that time, Cell Trend only had nine tests and did not yet offer the angiotensin or endothelin autoantibody tests (so I actually do not know if I am positive on those two).

    I was able to get high dose IVIG (and one year later) I was able to try Rituximab b/c I had such a positive response to IVIG. It was based on my overall autoimmune profile (positive ANA titer, Hashimoto's Disease, MCAS, calcium channel autoantibody that correlates with LEMS, anti GAD65, and then the 7/9 positive Cell Trend Abs which led my doctor to diagnose me with Autoimmune POTS).

    It was very challenging to get the initial insurance approval for IVIG but once it was clear that I was a responder, they were more open to continuing it, and then to letting me try Rituximab, b/c it offered a possible cure (vs. the IVIG was more of a temporary band-aid).

    I will have done IVIG for two years with my next IVIG cycle in July and I will have done Rituximab for one year with my 6th infusion in August. I have a long-running thread on PR re: my experiences with IVIG & Rituximab (so I won't repeat everything here!) but at the moment I consider myself in remission. I no longer use a wheelchair (after almost 4 yrs of 24/7 wheelchair) and I can walk and drive as much as needed at present.

    I will never use the word "cure" and I am still doing both treatments and still taking about six other meds plus many supplements. I am not at "pre-illness" level and honestly do not ever expect to be. But if I could maintain this level in the future after stopping IVIG and Rituximab, I would be overjoyed and would potentially be able to work part-time and get back to my career in some form (although I don't want to get my hopes up yet).

    Midodrine is one of the meds that I still take daily and has been very helpful for me. I know that it is an alpha adrenergic agonist like @Ema said but I lack the science to really explain what that means. We believe that it allows more blood to perfuse my heart and lungs when I stand so it is easier for me to breath.

    Martin, did you have any benefit from the SCIG? If your problem is autoimmune (and I do not know if it is), then you would never be able to get a high enough dose from SCIG. For autoimmunity, you need to do high dose IVIG (vs. low dose in immune deficiency). I have never tried HBOT but I know of other people who found it helpful.

    I am negative for Lyme on all tests but if you were considering Rituximab (not sure if you were?), you would NOT want to do it with active Lyme or infections.

    Hi Malea! I like your new avatar and hope you are doing okay. After I do my 6th Rituximab infusion (in August), I am going to re-test all of the Cell Trend autoantibodies and also test the two new ones (angiotensin & endothelin) to see if I am positive. We want to get a new baseline on all of my autoantibody levels after two years of treatment (and my prior tests were run in 2016). Can you remind me, did you ever end up trying the Losartan b/c of the angiotensin autoantibodies? I think you told me but I cannot remember!
     
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  6. Hip

    Hip Senior Member

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    I wrote a (hopefully) easy to understand explanation in this post, in case that helps. I can understand it, so it must be simple!

    You can use Goole Translate to convert to Czech.
     
  7. Gingergrrl

    Gingergrrl Senior Member

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    I remember that thread and it was brilliant and very helpful (but you have a smarter brain than most of us :D).
     
  8. MartinK

    MartinK

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    Hey, thanks all!
    google translator helps me a lot, but yes, its a really hard material for understand also for native English speakers!

    I also try find some info with connections of case auto antibodies with Lyme and viruses like EBV (both I had in past).
    Im really carefull with active Lyme in my case (LTT from Armin is little bit positive - but we know the accuracy of tests!), I try to be maximum without chemistry and HBOT really helps me with some symptoms - flu like PEMs are gone! Amazing! Little bit more energy and less inflammation feelings...

    Now Im on 40 sessions of HBOT - first 5 was really crazy and I slept all days, but after 10 sessions start progress and now I feel really better.

    @Gingergrrl - benefits from SCIG...dont know, maybe small. Its "Subcuvia"160 g/l ...1x week. But its on my insurance company and now Im a half year on it.

    Is there something natural support for help with auto antibodies? Or its all about full immunity support? In my case is high Zonu and EPX...gut inflammation. This is, why I try gut treatment now mostly with good diet and oils, and be out of eat chemistry.

    I'm trying to find a connections as much as possible!

    lovely thanks for everyone links!
    I really appreciate it!

    And, please, check something before using Midodrine/Propranolol? be carefull?
    I'm not sure if our doctors know anything more about it...

    thanks, Martin
     
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  9. Hip

    Hip Senior Member

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    I just have a sort of "logic module" in my brain, @Gingergrrl, that's all, and if you have this brain "add-on", it really helps decipher scientific or mathematical subjects. Most scientific topics contain a lot of detail, but behind all that complexity there is nearly always a sort of logical template, which creates the framework or scaffolding where all the detail slots into place. Like having a well-organized kitchen where all the utensils have their own storage place.

    I always used to be perplexed at how many people struggle to understand scientific concepts, but it's only since getting ME/CFS that I realized there is an unfair advantage in having a "logic module", after much of my module got lost in the brain fog, which means I can no longer really understand certain difficult scientific subjects that in the past I loved reading. So now I know what it is like to struggle to understand science!

    But logic is just one of many mental faculties; what I lack most is the emotional faculty, because ME/CFS caused me to get blunted emotions ("blunted affect" as psychologists call it), which means its harder to relate to and decipher everyday human situations, which are always driven by emotion.
     
    Last edited: Jun 19, 2018
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  10. Malea

    Malea

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    I would love to have this logic module, too, but it has never been there. The scientific stuff is always a big bunch of chaos until I find out, what are the important basics. Which usually takes ages ;) So a big thanks again for your great explanations in the other thread. It was extremely helpful to understand the basics of this.

    A question that came up when I read Martin‘s last message is, if there‘s any known clear connection between which specific pathogens are causing which specific autoimmune responses? (Just as an fictive example.... EBV could be the virus from which the autoantibody-response to beta2 adrenergic receptors starts... or something like that.)
    I’ve read that there are such thesises for illnesses like Hashimoto, Morbus Crohn,... but I‘m wondering, if concrete assumptions like that might exist also for the autoantibodies against adrenergic/muscarinic/other receptors?
     
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  11. Gingergrrl

    Gingergrrl Senior Member

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    I think I was born without this brain add-on to decipher science or math ;)... although I can sometimes do it with science (but never with math).

    I am the opposite and my whole life (and former career) is based on deciphering human emotions and I also feel them very deeply. Although of course they can be misread in an internet forum where you are not hearing the spoken word or seeing the body language, etc.

    Yes, exactly this for me, too.

    I am VERY interested in this as well b/c every doctor has said that some kind of infection is what caused my Hashimoto's Disease (a virus turned autoimmune and started attacking my thyroid but I do not know which one). We believe that EBV and other viruses (after 3-4 years of staying IgM+ post mono in my case) turned autoimmune. I'd love to know which viruses link to which autoantibodies (if this information is known)?

    I just Googled "Morbus" (from your quote @Malea) and learned that it means "Disease" in German so you taught me a new word ;)
     
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  12. Malea

    Malea

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    @Gingergrrl Whoops.. that‘s a new word for me,too :D
    We usually say „Krankheit“ for disease. But in the medical language here there are sometimes words/ names used that orginally come from the roman (/latin) language. That‘s were Morbus must be originally from ;)
     
    Last edited: Jun 20, 2018
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  13. pattismith

    pattismith Senior Member

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    Interesting that I noticed over the years that this logic module (i call it rational but it is more or less equal) is the only one that survived a bit to my long brain wrecking, and the last to get affected.

    Only the velocity of this module was affected at first.

    Memory was one of my earlier problem, which I had to compensate with a more powerful logic module.
     
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  14. Gingergrrl

    Gingergrrl Senior Member

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    I realize I actually only Googled the translation of "Morbus" and assumed it was German (since you wrote it from Germany) but now realize that it must be Latin like you said. There are often words on PR that I don't know and sometimes they are English words (but British English from the UK) and sometimes just science/medical words in English that I have never heard of. So I am never really sure when I Google terms from PR what I might find!
     
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  15. MartinK

    MartinK

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    Hey, thanks a lot all! I still little struggling with all these studies about auto antibodies, but @Learner1 help me a lot in our conversation! many thanks! I really appreciate it!

    My heart rate and blood pressure are in normal, sometimes little bit low - anyone here use Florinef and Saline?
    I look for some personal experiences ;-)

    thanks a lot!
    next week I go visit my doctor and I want to be ready! :) ...with bigger dose of IVIG for sure too! ;-)

    Martin
     
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  16. EMilo

    EMilo Elizabethmilo.com

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    @Gingergrrl are you planning to come off of infusions for a while before you retest ?
     

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