Review: 'Through the Shadowlands’ describes Julie Rehmeyer's ME/CFS Odyssey
I should note at the outset that this review is based on an audio version of the galleys and the epilogue from the finished work. Julie Rehmeyer sent me the final version as a PDF, but for some reason my text to voice software (Kurzweil) had issues with it. I understand that it is...
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brain autoantibody screening

Discussion in 'Immunological' started by 62milestogojoe, Aug 15, 2017.

  1. 62milestogojoe

    62milestogojoe What's a forum then?

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    I talk to myself a lot.....I have 2 sons!
    I think some clarity is needed (for myself especially) so here goes. Below are 2 kit inserts for Immunology autimmune disease screenings which I picked up from the Immunology dep't at work.
    upload_2017-8-18_7-31-30.png

    upload_2017-8-18_7-38-43.png
    If you have had auto Ab screening some of your reactive tests might be here,the first scan is Autoimmune Inflammatory Myopathies 16Ag (IgG)
    The second insert is Antibodies against neuronal antigens (IgG) (Paraneoplastic syndromes 12 Ag)

    Why have I included these? Well, the obvious point is that there are no Ab here to a disease called myalgic encephalomyelitis! This won't shock the community to find out there is no diagnostic tool of this sort for ME/CFS.

    Therefore, I would hesitate to spend my £/$ on testing that cannot tell a biomed/doctor whether you have this disease, he/she could only tell you that you have Ab against anything in this panel- and that might not be of clinical significance anyway.....see later.

    There has been a study in Germany which targeted Beta 2 adrenergic Ab or B2AR (associated with POTS, Orthostatic hypotension) and M3 and M4 muscarinic cholinergic receptors. So it appears there may be auto Ab associated with ME. We need more if we are to develop an efficient method of diagnosis and monitoring.

    Is ME/CFS an autoimmune disease anyway? Is there a sub group of patients with autoimmune disease?
    Let's take a look at the sex distribution ratio in some autoimmune diseases.
    • In SLE (Lupus) female to male ratio is approx 12:1
    • In MS (multiple sclerosis) it is 3:1
    • In RA (rheumatoid arthritis) it is 4.5 to 1 below age 50
    • In ME/CFS it is 3.5:1
    So ME does fit the pattern of autoimmune disease in this respect though it is more than circumstantial it is not definitive proof even taking into consideration the German findings regarding B2AR.

    What is relevant however is that Rituximab is used (outside of cancer) primarily as a drug to target autoimmune disease so we might tentatively strengthen our hypothesis that ME is an autoimmune disease.

    This evidence is reinforced in the German study by the fact that lower levels of B2AR and M4 were found in ME patients following the course of rituximab treatment. Indeed, 60% of these patients were in full or partial remission 5 months following treatment.

    So can we build a hypothesis that ME/CFS is an autoimmune disease?

    Would new Ab discoveries lead us to be able to correlate areas of neuroinflammation that I outlined in the neurological forum diagrams with disruption of specific functional brain loci thus linking the Ab disruption with ME symptoms? Could we replicate the findings of the German team?

    The case is strong but I suspect we need the elucidation of many more auto Ab. to thymus etc

    Moving on to a read of a paper called Brain-reactive antibodies and disease by Diamond et al 2013 Annual review of Immunolgy, here are some pertinent points. Quoted or paraphrased

    • The presence of CNS reactive Ab in general is harmless to the host
    • Most brain reactive Ab appear to target antigens (Ag) expressed by neurons or astrocytes rather than Ag expressed by microglia. Microglia are the major phagocyte cell poulation of the CNS
    • Ab in CSF may be a marker but not a contributor to pathogenesis therefore a patient may have elevated Ab but no disease.
    I've just tried to shed some light on our speculation. There is a great deal not known about brain function. There is evidence to suggest ME is an autoimmune disease of the brain.

    It is possible to argue against this hypothesis but worth pointing out that should the model of initial brain infection by EBV, CMV or gram -ve bacteria be responsible for stimulating a cascade that results in autoimmune disease then according to Diamond et al our prognosis may not be very positive- The brain has little regenerative capacity'.

    Is this why only such a small percentage of adult ME patients recover their health to pre ME levels and 90% of us don't?
    @Hip
    @Gingerggrl

    '
     
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  2. Gingergrrl

    Gingergrrl Senior Member

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    For me, I did not do the tests b/c I thought there was an auto-Ab for ME/CFS vs. that a Neuro was trying to see if there was an auto-Ab that could explain my muscle and breathing weakness and also my autonomic problems. He told me that all of the tests he was sending to Mayo would be negative yet two of them came back positive and this was literally the turning point in my treatment.

    If someone actually had anti NMDA (which I do not), then time is of the essence since it is often fatal. So these tests can be used to identify or rule out other conditions (either instead of or in addition to ME/CFS).

    I have to disagree re: positives being found, and IMO they are significant b/c if you have cancer or a paraneoplastic syndrome, you want to identify it as early as possible. The Calcium autoantibody that I have links to small cell lung cancer (in some cases) and this led my doctor to order a yearly lung cat scan. Most protocols say to do this for a minimum of five years (which seems excessive to me given the amount of radiation) but at least now I can make an informed choice.

    And the treatment for most of these autoantibodies is IVIG and Rituximab. Once I found out I have 11 auto-Abs, I immediately began pursuing these treatments (which still took several months each to get approval for). Had I been negative on all of the auto-Abs, I would have continued to search in other directions.

    I agree and if Rituximab helps a sub-group of people with auto-antibodies, I think this is very significant. And I don't mean exclusively brain auto-antibodies vs. any paraneoplastic, adrenergic, cholinergic, etc. There are many autoimmune diseases, and suspected autoimmune diseases, that are helped by these treatments and the only way to know is to get tested (even if this does not give you an official bio-marker or label of ME/CFS). You can treat symptoms and auto-antibodies without a label.

    I knew nothing about this myself until March 2016, and fought for IVIG approval until July 2016, and have now been doing IVIG for 13 months. Hope this helps?!
     
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  3. 62milestogojoe

    62milestogojoe What's a forum then?

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    Hi GG, really useful to get input from a patient who has 'been there', thanks
     
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  4. Jesse2233

    Jesse2233 Senior Member

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  5. 62milestogojoe

    62milestogojoe What's a forum then?

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    I'll have to educate myself, what are your thoughts?

    Quick check of ABCAM and the other Ab is remarkable.

    Who chose the screen? Was going to contact Euroimmun and the German bioscience company who manufacture the B2AR kit-but your lab's findings hit the target extremely well. (unreal!)

    I'm off to Tai chi class. Was looking forward to a weekend off! Lots to discuss here-do we have an immunologist handy?
     
    Last edited: Aug 19, 2017
  6. 62milestogojoe

    62milestogojoe What's a forum then?

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    Quick search of those AAB from Jesse and the German study AAB reveals some interesting information.

    It would be really useful if all PR members who have undergone AAB test could find info on what they were positive to and contribute to a kind of atlas of AAB in ME. So print out the diagrams below, add to them and upload. What do you think? Collaborative effort.
    [​IMG]

    [​IMG]
    @Gingergrrl
    @Jesse2233
    @mrquasar
    @Hip
    @Jenny
    @pattismith
     

    Attached Files:

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  7. kangaSue

    kangaSue Senior Member

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    @Jesse2233 The anti-GM1 Ab is often related to having Autonomic Neuropathy. AN can have an autoimmune basis so that might be worth further looking in to. Anti-GM1 can be an indication of a Lysosomal Storage Disorder too.
     
  8. Jesse2233

    Jesse2233 Senior Member

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    Interesting, thanks Kanga. How might I look deeper into AN? Neurologist?
     
  9. kangaSue

    kangaSue Senior Member

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    Yep, generally the field of a Neurologist.

    Some doctors have the equipment to check for autonomic dysfunction doing a Heart Rate Variability to Deep Breathing Test (sometimes called an R-R Interval Test) which is a test of vagus nerve function and something usually amiss with AN.
     
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  10. Shawn

    Shawn Senior Member

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    There are more UNKNOWN antibodies that known ones all this means is you don't have any of the known ones.

    Ask for a RAT BRAIN TISSUE ASSAY to detect unknown ABs and inmungenic reactions.
     
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  11. Gingergrrl

    Gingergrrl Senior Member

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    @Shawn In your experience/opinion, even if someone had more autoantibodies that were unknown at this point, wouldn't the basic treatments options remain the same (high dose IVIG, Rituximab, plasmapheresis, immuno-suppressants, etc)?
     
  12. 62milestogojoe

    62milestogojoe What's a forum then?

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    Hi Shawn, I understand what you are saying but the main focus of the original question is how do we facilitate a group of known reactive Ab that ME patients have responded positive to in tests.

    For example, the Euroimmun kit for 'Autoimmune inflammatory myopathies 16Ag (IgG) kit has MI-2alpha and beta, TIF1 gamma, MDA5, NXP2, SAE!, Ku etc.

    We need to find diagnostic tools for medics to be able say with some degree of confidence that a patient has ME-
    a kit that says Autoimmune Mylagic encephalopathies 16Ag. with a group of appropriate markers.
     
  13. Gingergrrl

    Gingergrrl Senior Member

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    I don't think such a thing even remotely exists (or is even close to existing) at this time.

    My understanding of ME/CFS is that it has a set of symptoms that are mandatory which is why I no longer think it is my correct diagnosis. If that ever shifts to ME/CFS being diagnosed by a specific viral titer or auto-antibody, then it may turn out to be my diagnosis after all.
     
  14. 62milestogojoe

    62milestogojoe What's a forum then?

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    Hi GG, of course you are correct in saying that such a kit does not exist. But kits exist for a whole number of disease states-take a look at Euroimmun's website. I used to use their kits in RTP screening.

    The point I am making is if we do not look then there is NO chance of finding.
     

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