The 12th Invest in ME Research Conference June, 2017, Part 2
MEMum presents the second article in a series of three about the recent 12th Invest In ME International Conference (IIMEC12) in London.
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Cyrex Assay #5 Autoimmune Results

Discussion in 'General ME/CFS Discussion' started by drob31, Feb 20, 2015.

  1. drob31

    drob31 Senior Member

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    Everything looks okay except the phospholipid antibodies. I still haven't spoke to the doctor yet, but it looks like it's antiphospholipid syndrome, or lupus. I don't know if it's a true positive or not yet.

    I found this site that calls it hughe's syndrome:

    http://www.hughes-syndrome.org/self-help/living-with-hs.php


    Untitled.png

    CPT Code:
    Phospholipid IgG + IgA Combined - 83516-59

    Function:
    Phospholipids are a class of lipids that are a major component of all cell membranes. They play a role in the formation of lipid bilayers. Most phospholipids contain a diglyceride, a phosphate group, and a simple organic molecule such as choline.

    Antibodies Appear:
    Antiphospholipid Syndrome 1 4
    NIDDM 7
    Systemic Lupus Erythematosus 3 6

    Known Cross Reactions:
    Anti-ribosomal P protein antibodies 1
    DNA 2
    Cardiolipin 2



    Clinical Significance:
    Antibodies against phospholipids may have an important role in mediating platelet destruction in autoimmune disorders. Anti-phospholipid antibodies (anti-PL) have been shown to bind to the membrane of activated platelets; thus it has been postulated that this may result in increased destruction of platelets by the reticuloendothelial system.3 Anti-PL have been demonstrated in patients with autoimmune thrombocytopenia (AITP) and Systemic lupus erythematosus (SLE).3 Anti-PL are directed against a diverse group of phospholipids and phospholipid-binding proteins; among these, anti-cardiolipin (anti-CL), anti-beta- 2-glycoprotein I (2-GP-I) and anti-prothrombin antibodies seem to be the most relevant from the clinical viewpoint.1 Anti-PL have been found in moderate and severe noninsulin-dependent diabetes mellitus patients, and thus may suggest that autoimmune nerve destruction may be involved in diabetic neuropathy in NIDDM patients.7 Anti-phospholipid antibody syndrome may appear as a stand-alone syndrome or associated with major connective tissue disease such as SLE and may manifest in a number of neurological conditions.1 Widespread thrombosis and infarction of placentas obtained from women with antiphospholipid syndrome (APS) was actually reported both in first and second trimester abortions.4 There is evidence from in vitro studies that anti-PL may induce pro-coagulant state at the placental level, thus playing a pathogenic role of thrombotic events in anti-PL-associated pregnancy.4 It can be concluded that impaired endothelial fibrinolysis is a potential prothrombotic mechanism in subjects with antiphospholipid antibodies.5
     
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  2. Hell...Hath...No...Fury..

    Hell...Hath...No...Fury.. Senior Member

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    This is something i have been wanting to get tested for a while but was unsure if the nhs would give me a blood test for the three possible antibodies for Hughes. I'll be asking my GP about it in the next couple of weeks.

    Dr. Jill R Schofield published a clinical association between POTS and Hughes syndrome a year ago co-authored with Professor Graham Hughes.

    She answers some common questions about it on the disautonomia international website:

    http://www.dysautonomiainternational.org/blog/wordpress/category/pots/

    There's another general article i found of someone talking about Hughes syndrome and CFS:

    http://lassesen.com/cfids/familyhistory.htm

    I'm almost a textbook case of Hughes Syndrome. I even noticed by accident that when i use aspirin to de-sludge my blood when needed this eases the POTS symptoms for the rest of the day with no major pulse spikes.

    I'm wondering if thick blood could be causing the same type of problems as potential low blood volume.

    I asked Professor Newton about this as i thought she might have heard of it if it affects people with POTS but she's never heard of Hughes syndrome and looked at me with a baffled look so i'm on my own looking into this one.

    This is a Hughes website if anyone wants a look:

    http://www.hughes-syndrome.org/about-hughes-syndrome/skin.php
     
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  3. drob31

    drob31 Senior Member

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    You say hughes can cause low blood volume?

    I don't think I have traditional hughes symptoms, but I have been having issues with word recall lately.

    Also, my symptoms are,

    Cold fingers after eating like Raynaulds
    Diffuse hair loss, shedding, but always seems to grow back
    Word recall / memory issues
    General fatigue
    Not feeling like myself
    Eye sensitivity (floaters, flashes)
    Possible autonomic dysfunction (forearm vasodilation randomly occurs, especially at night, like a huge dose of NO)

    Notice how all of those symptoms resemble hypothyroid to a T, yet no thyroid antibodies, and thyroid numbers are normal.

    However, my cortisol is high. And high cortisol can cause hypothyroid symptoms.

    Hence, why I'm not too quick to jump on the hughes diagnosis just yet.

    Here's the interesting part, however. My mom could not take birth control because she got blood clots from it.

    Also, when I ran my 23andme data through prometheus, my highest risk factor was 16x risk factor for DVT. It seems my SNP's seem to correlate with DVT. Could this be a genetic manifestation of Hughes, and could the antibodies simply be noticable at this point but won't cause symptoms for another decade? Could it just be a red herring, while I simply have "adrenal dysfunction"?

    It's hard to say, and I don't even know the reference range signifiance yet, but i'll talk to the doctor tomorrow who can interepret it.
     
  4. drob31

    drob31 Senior Member

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  5. Hell...Hath...No...Fury..

    Hell...Hath...No...Fury.. Senior Member

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    Yep! Its just speculation i think though. I dont think hughes causes low blood volume i think maybe the sludgey blood could be instead of low blood volume causing similar problems with oxygen delivery.

    If hughes is linked to CFS, POTS, severe migraine that doesnt respond to treatment, raynauds, cognitive etc, i really want to look into it. It also mentions people with hypermobility syndrome often have hughes (something else i'm looking to see someone about)

    Its quite interesting! I'll have to fish out my dna stuff but my elevated risks were also thrombosis and stroke.

    Aspirin and serrapeptase are often used as treatments which is strange as i love using serraprptase for symptoms and already treat with aspirin.

    Busy looking into ways to just have the three antibodies tested at the mo, maybe going private would be easier for just a blood test.

    But out of the three antibodies:

    * Anticardiolipin antibodies
    * Lupus Anticoagulant (not related to lupus)
    * Anti betal Glycoprotein-1

    You only need to be positive for one to have a hughes diagnosis apparently.
     
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  6. drob31

    drob31 Senior Member

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    The Cyrex Array #5 is expensive. I paid 575$ out of pocket.

    Serrapeptase is interesting, how long have you been using it?

    I tried a baby aspirin today, but did not magically feel better.
     
  7. Hell...Hath...No...Fury..

    Hell...Hath...No...Fury.. Senior Member

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    The serrapeptase i use is in the form of Blockbuster Allclear ive been on it for a few years when needed.

    The aspirin i think i used three doses of 75mg over half a day, it was to get rid of a 'thick blood' migraine though i call them clot migraines (migraine that only responds to blood thinning and nothing else) i also have a PFO hole in heart which potentially contributes to this which is the official reason i use aspirin from the cardiologist.

    So i can use the migraine as an indicator when the blood is thin enough. It was after this time that my heart rate stopped increasing over 120bpm when upright.

    Ouch thats some price for the assay, i'm guessing the nhs wont allow for the specific antibody test then :bang-head:
     
  8. drob31

    drob31 Senior Member

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    Have you ever thought about using gofundme? I don't know how this site feels about people using that service, but it seems like it would be helpful for allot of people that needs expensive tests.
     
  9. Hell...Hath...No...Fury..

    Hell...Hath...No...Fury.. Senior Member

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    Ive never heard of it but i'll look into it thanks! :thumbsup: Ive just emailed a local private hospital to get a quote for the bloods to be done. I'm not really looking for an interpretation at this time so it should save a bit of money. Just a +/- will do for now. There are no Hughes specislists where i live so even if i have a positive it will most probably lead nowhere going off experience, but it would be interesting just to see out of curiosity :nerd:
     
  10. drob31

    drob31 Senior Member

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    @Jonathan Edwards have experience with antiphospholipid syndrome?

    I was just DX'd.
     
  11. drob31

    drob31 Senior Member

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    I don't know. I have a ton of ideas, I know most are probably "outside the box."

    Let's say you have an autoimmune condition, and you attempt to a fast, such as a 3 day fast to rebuild the immune system. Could that quiet the attack down? How about a strict autoimmune diet? How about immune modulators, etc?
     
  12. Hell...Hath...No...Fury..

    Hell...Hath...No...Fury.. Senior Member

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    You got a Hughes diagnosis today? Do you also have POTS? Just out of interest as they say that POTS could be a non clotting version of it. Its 'nice' to speak to someone who has it. After seeing Professor Newtons puzzled look when i mentioned it i didnt think i'd find anyone on here who has it.
     
  13. drob31

    drob31 Senior Member

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    Yeah, I got the DX, and the doctor has a supplement protocol, but other than that, he doesn't have much. Hence, why I may look for someone more knowledgeable.
     
  14. Hell...Hath...No...Fury..

    Hell...Hath...No...Fury.. Senior Member

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    Same old story eh? deffo look into serrapeptase. Its good stuff
     
  15. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    Nobody calls it Hughes syndrome except Graham Hughes himself and his friends. It was first identified as an aspect of lupus marked by ' false positive Wasserman reaction' or 'lupus anticoagulant' decades ago. Dr Newton will know all about it under antiphospholipid syndrome. The rheumatologist she works with on Sjogren's syndrome will know even more about it .
     
    Last edited: Feb 25, 2015
  16. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    It doesn't look to me as if you have antiphospholipid syndrome so far. The antibody level is not very high and I am not sure you have any relevant symptoms to make the diagnosis. The genetic risk for DVT is a red herring because it is a genetic risk, not an autoimmune effect, which is something you acquire later, not genetic.

    The antibodies may be significant and if you already have a genetic risk that would be important as a potential additive effect but I would want to see more evidence of relevance of the antibodies. I would strongly advise seeing a specialist because the anti-phospholipid test is one of the most difficult to interpret autoantibody tests we have - even in the major university labs.
     
  17. Hell...Hath...No...Fury..

    Hell...Hath...No...Fury.. Senior Member

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    She was shown the full name too as i took notes in including the antibodies to be tested for.
     
  18. drob31

    drob31 Senior Member

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    Thanks @Jonathan Edwards

    What sort of specialist do you recommend? Rheumatologist?
     
  19. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    Well, take my word for it, she knows all about it. All physicians do.
     
  20. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    Yes, it will generally be the rheumatologist who also looks after lupus for your area - antiphospholipid syndrome very commonly occurs as part of lupus but also occurs on its own. All young rheumatologists are well trained in this - it is one of the things that comes up most often at educational meetings because it is interesting.
     

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